In 1999, both “Blue” magazine (the “Bucking the Condomocracy” article, also reprinted in “Out” Magazine, July 1999, Vol. 7, No.12), and “HQ” magazine (“They Shoot Barebackers Don’t They?”) published articles on barebacking, the one in “HQ” being a reprint of an article from “Poz” magazine. The latter caused a bit of a furore in both “The Sydney Star Observer”, and in the “Sydney Morning Herald”…probably understandably. Read in the context of HIV education and safe sex messages at that time, they read almost as a promotion of barebacking.
I was writing regularly for “Talkabout” magazine at the time, and was on the magazines working group. When I read both articles, I thought they elicited a response, and started to put an article about it together. However, several things were going on at “Talkabout”’ at that time, most notably was a new editor, and I was unsure of how liberal she was going to allow the writing to be, and secondly was an article I had written about the “Options” Employment Agency, which was operating on Oxford St at the time, supposedly to assist HIV/AIDS people to return to work after surviving AIDS, or to re-educate. I had written an expose of them not really doing much to actually assist people, and using said clients to do unpaid “work experience” in their offices. The editor, in all fairness, had sent the article to them… and their response was to threaten to sue the organisation (PLWHA NSW), the magazine, and myself. It was “Bring it on!” from my perspective, but obviously from the organisations…and funding…perspective, it wasn’t something they wanted..As it turned out, my accusations were accurate (I had been quite outspoken about what was going on there for some time,…and had the written testimony of a number of guys who had personally encountered the rort…and had even had the office manager of Options…whose name escapes me now…invite me into his office, and made veiled threats about what I was saying) and the agency had its funding stopped, and closed down shortly after. The article was published, but was so heavily edited that it lost all its clout. I was very disappointed.
However, this made me a bit dubious about publishing another controversial article, and being unsure about the editors response to this piece, and time then passing, I never completed the article. I have been republishing most of my “Talkabout” articles on my blog over the last couple of years…some re-edited, some not…and came across the original draft for this article. I couldn’t actually remember the content of the magazine articles, so did a bit of googling, and thanking the gods of cyberspace that nothing ever disappears completely in the ethos…I found both original articles. I will now include them in my article, to have a permanent record of them. They both make interesting reading.
About 18 months or so further down the line, and with a different editor, I wrote yet another controversial piece on bug chasing…heavily researched, so unbiased…that was totally pulled from publication by the then “Taljabout” working group. It was with great trepidation that Glenn, the then editor, rang to tell me the decision. He knew how much work had gone into it, and I cannot ever recollect an article, written by a HIV+ man, being pulled from publication before in “Talkabout”. The reasoning: it was a great article, but because “Taljabout” was funded by NSW Community Health, there was a perception that said organisation may have seen it as a “promotion of the act of bug chasing” rather than an expose. I was furious. Bug chasing was being talked about within the HIV community, the whole sex dating mentality of “breed me” was a reality…it was happening! To my thinking…it was as if they were burying their heads in the sand, and pretending this just wasn’t happening! The mentality defied me!
Below is my original article with the articles now included. At the end is letters published regarding the “Bucking the Condomocracy” article, and a more recent article on the same subject. My bug chasing article can be found on this blog simply by searching for “barebacking”.
My, hasn’t the HIV community been blessed this month, with both a quarterly and a bi-monthly magazine taking up the HIV cause. I wish I could think that the sort of hype they give HIV/AIDS is harmless, but unfortunately, after reading through both articles – twice – just to make sure I hadn’t miss a subtle point, my conclusion is not so.
The article in HQ magazine (They Shoot Barebackers, Don’t They?), which has also received publicity via both the Sydney Star Observer, and the Sydney Morning Herald, is a reprint of an article from the American POZ magazine in February 1, 1999. When my partner and myself (also HIV+) read the article earlier this year, we were both quite horrified. It described in quite detailed account the so-called phenomena of ‘barebacking’, a current catch-cry for unsafe sex, especially between HIV positive and HIV negative men. This is supposedly by people who are ‘over’ practising safe sex and using condoms, and desire the thrill of ‘skin-to-skin’ sex. It reports on private parties in the USA for people who wish to indulge in this type of sex, and consider the risks of catching HIV minimal, compared to the joy of unprotected sex. Needless to say, the people who run the parties make sure everyone present signs a disclaimer. Wouldn’t want to get sued by people becoming infected, would we! The phenomena has reached as far as the Internet, where there are advertisements placed by HIV negative people to get HIV positive people to supposedly ‘father’ their own HIV infection. The mere implications of this sort of mentality would be enough to frighten anybody. There are also porn sites promoting galleries of photos with guys barebacking. Make it erotic, and you make it right, or so it would seem.
Of cause, the obvious question to ask is why is this happening? Have we stretched the limits of the practice and promotion of safe sex as far as it can go? Have people become so accepting of HIV that it is no longer considered a dangerous disease? Does the fact that we now have an arsenal of drugs to control HIV infection reducing people’s fear of infection? Do younger people consider the entire AIDS issue as a ‘generational’ thing? Is it just a millennium trend? Considering the current arguments going on around compliance and drug holidays, I don’t think it is feasible to even consider that HIV is either ended, or under control. Ask anyone infected and on drug regimes what they think of this! Ask them how much they enjoy taking the handfuls of pills everyday, and how much they enjoy the side effects of same. Ask them about how secure and comfortable they feel in the knowledge of a possible ten to twenty years with such regimes; always hoping the next generation of drugs is going to be easier on us. A vaccine is still a long way off.
Likewise, I also loved the article in ‘Blue” (“Bucking the Condomocracy”) which hit you in the face with the fabulous attention grabbing statement (in bold font) ‘POST-AIDS’. Now this article isn’t quite as bad as I originally thought. In the context in which it is written, it is in many respects correct. However, it does overlook a major point. If we are living with a ‘Post-AIDS’ mentality, then why are so many people in their mid twenties seroconverting? The article tends to cover the promise given by new treatments, but not the fact that playing down HIV is a dangerous road to take. It is full of trendy language, and as someone who has lived with HIV day in and day out for the last seventeen years, I haven’t heard of any of the expressions mooted by the author. Terms such as a ‘Protease Moment’, ‘vaccine optimism’ and ‘vaccine positive’ (in respect to forth coming language in the vaccine age) are all nice terms, and factually the article is right-there is more emphasis being placed on a preventative vaccine than a therapeutic, but that possibly is still a decade away. The article is, I grant you, full of positive images, which perhaps isn’t so bad in a world where doom and gloom are never far from the headlines. But it does seem to have made it look as though HIV is no longer happening. By being so nicey nicey about HIV, I feel it tends to play down the actual dangers inherent in contracting it. Again, ask anybody HIV positive if the would change sero status if possible, and you would get an almost one hundred percent resounding yes!
I felt, when originally reading the barebacking article earlier this year that it demanded a response, but being in an American magazine, and being a phenomena that I had not heard of occurring here (not, of cause, taking into account the many unsafe sex stories one hears from the saunas and backrooms), I decided to let it lie. The fact that HQ magazine has done a sideline on the Australian reaction to barebacking does not change the fact that, having the subject announced on the front cover is irresponsible journalism, to the extreme. The editor can defend it however she likes, but then she is not working in mainstream HIV/AIDS, and obviously knows very little about the subject, or the implications of the article. Trying to make barebacking a mainstream and fashionable pastime is not funny! An article published by Capital Q the same week as the SSO had its piece on HQ, showed the possible incidence of contracting HIV through unsafe sex. Odds of 120 to 1 (for unsafe anal) may sound good to many people, but considering the sex life of your average horny gay male, that makes the risk of infection from unsafe practices highly likely very early in their lives.
I grant that freedom of the press is a much-nurtured principle, but it can go too far, and the press often plays a major role in influencing people in a particular course of action that they may not otherwise take, and are often paramount in establishing new trends (Desirable, and undesirable). Journalists must stop looking at just headline stories to sell magazines, and consider the implications of what they are publishing.
LETTERS PUBLISHED IN “OUT” MAGAZINE SEPTEMBER 1999, VOL 8, NO. 3 IN RESPONSE TO “BUCKING THE CONDOMOCRACY”.
Barebacking is Dead. Long Live Barebacking!
Leave it to science and rational thinking to ruin a popular sexual taboo.
The “bareback” label for sex without a condom has faded in the age of pre-exposure prophylaxis (PrEP) and U=U. People not living with HIV who are taking PrEP are protecting themselves from transmission, while people living with HIV who have an undetectable viral load are unable to transmit the virus to their sex partners at all. As the very definition of HIV risk is being rearranged, the problematic term “barebacking” is finally being relegated to the dust bins of history.
We all know the nature of taboo. The naughty, furtive longing for something forbidden. As the AIDS pandemic lurched from the murderous 80s into the 90s, sexual behavior among gay men pivoted, from horror at the very thought of sex without a condom to, well, something we just might like to do. Real bad. “Barebacking” instantly became part of the lexicon, spurred by maverick porn producers who capitalized on our carnal desire to have sex without a barrier.
Sex without a barrier. Unprotected sex. Barebacking. Also known as having sex. Ask a straight person.
Gay men have always barebacked, of course (along with every other human being and their parents), certainly before HIV ever showed up and yes, even immediately after. If we all had stopped fucking without barriers we would have halted the HIV epidemic in its tracks. Instead, we kept behaving like human beings, making mistakes or getting horny or saying yes when we should have said no or getting drunk or falling in love or being young and stupid.
And sometime, even in the darkest and deadliest years of the epidemic, to unload inside our partner was an enormous “fuck you” to AIDS. You might not understand the humanity of that choice, the triumph of it, or the search it represented for some kind of spiritual and physical release in the midst of relentless mortality. I guess you had to be there.
Not long after we emerged from the 1990s, shell shocked but ready to rumble openly again now that we were armed with effective medications, a renegade porn star bottom named Dawson collected orgasms in the double digits on video and his flick was so polarizing that it was banned in gay video stores. Today, his exploits seem positively quaint, and those same video stores and the countless internet sites that followed transformed themselves from featuring a barebacking category to dropping the category and lumping everything together. Sex without condoms in porn is now customary. Condoms are the outlier.
The actual term has lost its wicked luster. These days, you rarely hear your sex partner say, “oh yeah, fuck me bareback, man.” I mean, sure I will, dude. Yawn.
And gone, too, hopefully, is the judgment of those who labeled barebacking a deviant, destructive pathology. This may be the most painful aspect of our prevention legacy; the rush to demonize those who admitted to having sex without condoms before it became agreeable again, not to mention the furor over those of us who have spoken empathetically about sex without a barrier.
Activist and writer Tony Valenzuela became a community pariah when he wrote a piece in 1995 about being a young man living with HIV who had condomless sex with his boyfriend. He thumbed his nose at his detractors when he appeared naked on a horse for an infamous 1999 POZ Magazine cover (“They Shoot Barebackers, Don’t They?”) in which he discussed how the controversy angered and confused him. Valenzuela’s personal character was questioned and his professional life was derailed for years.
The late social anthropologist and author Eric Rofes (Reviving the Tribe) nearly caused a riot at a 1996 Atlanta town hall event for gay men when he discussed the spiritual and emotional value of sharing semen with a partner. And even as recently as 2013, my essay, “Your Mother Liked It Bareback,” produced one apoplectic comment, among many others, that remains the pinnacle of my blog infamy. “You,” it said, “are a vile merchant of death.”
Maybe, with our new biomedical tools of HIV prevention, those same people who once blindly damned sexual behaviors they didn’t understand — whether out of puritanical beliefs or their fear of their own desires – have reconciled their fantasies and their HIV risk. I hope they’re enjoying totally hot sex and the fluids are flying.
It is difficult to ignore the appalling homophobia, internalized and otherwise, that runs through this aspect of HIV prevention history. We held ourselves as gay men to a more grueling standard than the countless non-queers who get an STI (several of them life-threatening) or an unplanned pregnancy every year.
I have no illusions. Sexually transmitted infections continue, even if the very thought of gonorrhea just makes me feel nostalgic. The PrEP train hasn’t reached everyone who might benefit from it and there is misinformation about its efficacy and side effects. Meanwhile, nearly half of those living with HIV in the United States have not reached viral suppression. There is still reason to be cautious about the who and the when and the how of sex. Now, as ever, we are responsible for our own bodies and the risks we take.
Frankly, behavioral change has not served us well in the grand scheme of HIV prevention. There has always been some debate, tension even, between those who believed the answer to HIV infections is behavior modification, and those who welcome the advent of biomedical interventions such as PrEP and “treatment as prevention” (TasP) that don’t rely upon sexual behavioral choices to work.
Throughout the decades, we have all witnessed the dominant, primal pull that sexual desire has exhibited over caution, so I know which prevention strategy my money is on. But hey, to each his own strategy. For that matter, condoms are a golden oldie and a perfectly legitimate choice. You do you.
What has changed are the conversations and information gathering that happen between partners. PrEP, medications, who is undetectable or not, what sexual positioning in what combination will occur, all of these exist in a more informed landscape, at least among gay men in this country.
Barebacking, as an urban phrase and a taboo, is dead. Thank god and good riddance to this divisive bit of sexual branding. Sex, meanwhile, motors happily onward, unbothered by the judgments of man.
The Alice B. Toklas Memorial Democratic Club of San Francisco was the first registered Lesbian, Gay, Bisexual and Transgender (LGBT) Democratic Club in the nation. Forming only two years after the Stonewall riots in the infancy of the LGBT civil rights movement, Alice grew to become a vibrant organization that has made a profound impact on San Francisco, California and American politics. Alice made its impact by training activists over four decades to become political professionals and electing candidates that have fought for the issues that are important to the LGBT community. The club has been instrumental in growing new leaders who would rise to the highest levels of government in the nation, such as Dianne Feinstein, an early friend of the club. Alice has been critical to the fight for LGBT leaders to win office, such as Mark Leno, the first gay man elected to the California State Senate. These leaders have helped make San Francisco the epicenter of the LGBT political movement, advancing causes such as equal benefits, domestic partnership, transgender health care, and marriage equality. Alice continues to be a major player in local, state and national politics and remains an inspiring and effective organization to this day.
1970s-1980s: Challenging the Conspiracy of Silence and Working Together as a Community
Beginnings of the Club
Back in 1971, it had only been a couple of years since the Compton’s Cafeteria Riot and Stonewall Riots; homosexuality was still registered as a mental disorder by the American Psychiatric Association; the modern Women’s Movement was just forming; President Richard Nixon was playing to his “silent majority”; and the issue of homosexuality was still thought of in the popular consciousness as “The Love That Dare Not Speak its Name.”   
At this time, ‘gay people’ (including women, men and transgender people who frequently referred to the community in this period as a ‘gay movement’), all faced widespread cultural stigma and the high probability that they could be fired, expelled from families, and subject to violence for simply coming out. To even speak of gayness was taboo. This environment constituted a ‘conspiracy of silence’ where the culture had established rules that any deviation from perceived normalcy related to gender and sex was considered pathological, immoral and criminal. At this time and in this hostile environment, for gay people to sign up publicly for a ‘gay democratic club’ and for politicians to be associated with the issue of homosexuality, was an act of bravery.
Jim Foster founded the Alice B. Toklas Memorial Democratic Club in December 1971.  Foster was a gay rights activist who had been organizing with the Society for Individual Rights (SIR) to elect pro-gay candidates in San Francisco since SIR was formed in 1964. Prior to Alice there had been a few gay and lesbian advocacy groups such as SIR, the Daughters of Bilitis, the Mattachine Society and others, but gay political goals had never been incorporated directly into the platform of a major American political party.  In 1971 Foster chartered Alice to initiate gay advocacy within the Democratic Party and started a collaborative relationship that continues to this day. 
Why Alice B. Toklas?
Alice B. Toklas was the partner of the famous writer Gertrude Stein. The original 20 members of the Club chose Alice B. Toklas because the name served as a code to protect the confidentiality of members. Saying you were a “member of Alice” was like saying “I’m a friend of Dorothy” – only gay people would know that the “Alice” club referred to gay people.
Alice’s first political Campaign – 1972 McGovern vs. Nixon
Alice and Jim Foster played an important role in the Democratic Party’s selection of George McGovern as the Democratic Party candidate of 1972. Alice endorsed McGovern, opened a ‘McGovern for President’ campaign office, and became a Bay Area political operation for McGovern in one of the Democratic strongholds in the state of California. At a critical point in the campaign, Foster helped implement a midnight signature gathering campaign in San Francisco gay bars in advance of the state primary deadline that helped McGovern be the first candidate to submit the required signatures that morning. This placed McGovern’s name first on the list of candidates on the California ballot. McGovern won California with a 5-point edge over Hubert Humphrey, and ballot placement was considered one of the reasons for his win.
1972 Democratic Convention – First Attempt to put Gay Rights Plank in Democratic Party Platform
After McGovern became the candidate, Foster also represented Alice at the Democratic Party National Convention of 1972, and brought a “Gay Liberation Plank” to the national platform committee. This motion was extremely significant for the Democratic Party because it brought gay rights policy before the national party for the first time ever. Unfortunately, the Democratic Party was not yet ready to adopt gay rights in its platform. Kathy Wilch, a speaker at the Democratic National Convention, gave a divisive speech opposing the Gay Liberation Plank and halted approval of its inclusion in the Democratic Party Platform. This action angered many gay activists, prompting McGovern to send a letter clarifying: “Her views in no way reflect my views on the subject… I have long supported civil rights of all Americans and have in no way altered my commitment to these rights and I have no intention of doing so.”
McGovern didn’t specifically say he supported gay rights, but in referencing the Wilch incident, he included gay rights in the broader context of civil rights, which was a victory. Gay rights had never been recognized as civil rights by a previous national party leader. Alice and Jim Foster’s platform effort thus initiated a national effort to incorporate gay rights within the Democratic Party platform, and this relationship between the gay community and the Democratic Party would continue and grow for decades.
1973 – A club of professional advocates working from the inside
The people who started Alice were experienced in politics, many of them working previously for the Society for Individual Rights. Jim Foster, Jack Hubbs, Steve Swanson and Tere Roderick, the original officers, got the club off to a quick start. The club began raising “Dollars for Democrats”, started a door-to-door canvassing program, and outreached to Democratic Party members, including Supervisor Dorothy von Beroldingen, Supervisor Quentin Kopp, Supervisor Peter Tamaras, Senator Milton Marks, Senator George Moscone, and other elected officials.   At that time, Jim Foster built an especially close relationship with one of California’s most successful politicians: Dianne Feinstein. 
Early Political Successes
In 1969, Foster invited Supervisorial candidate Dianne Feinstein to meet with the Society for Individual Rights for her 1970 first race for Supervisor. After Feinstein was elected in 1970, Jim Foster requested that she introduce legislation to add the words “sex and sexual orientation” to the city’s non-discrimination ordinance. In 1973, Supervisor Feinstein introduced and passed the legislation at Alice’s urging. Following this action, Supervisor Dorothy von Beroldingen, another close ally of Foster’s, appointed Alice member Jo Daly to a television oversight commission, a first for the City, and paving the way for lesbians and gay men to be appointed to public positions in San Francisco in later years.
A major concern of the club in the early years was police harassment and substandard conditions in the San Francisco County jail. Gay men and lesbians dealt with police harassment issues with raids on bars and mistreatment by officers of people in the community. The jails were also a highly unsafe environment for gay detainees and the club made it a priority to change conditions in the jails. Jim Foster wrote Mayor Alioto a letter on behalf of the club criticizing him for not doing enough to address the problem of poor jail facilities. In this time, Alice began a long relationship with Sheriff Michael Hennessey who became a friend of the club, often performing as a disc jockey at the clubs annual holiday party. Hennessey worked with the community to institute changes in holding conditions for gay inmates.
Although the concept of “medical marijuana” was not a common political concept in this era, Alice supported efforts to decriminalize the overall possession and cultivation of marijuana.
The “Big Four”
In November 1973, Alice worked to elect Dianne Feinstein, Jack Morrison, Jeff Masonek and Dorothy von Beroldingen to the Board of Supervisors. It was the first “Alice Slate” of candidates, and became a model for future efforts.
1974-1977 Post Watergate Era – Beginnings of Political Change
With Richard Nixon’s resignation and the wind blowing at the back of Democrats, it was an exciting time. Jo Daly and Jim Foster went to the 1976 Democratic National Convention in New York, representing Alice. Despite the excitement about Democrats heading towards a win, Gay people were upset at the removal of the gay rights plank from the Democratic Platform to avoid ‘controversy.’ Gay protesters organized outside of the convention hall while Jo and Jim registered their disappointment to other delegates inside the convention. The ‘Conspiracy of Silence’ suppressing advocacy for gay rights on the national political level continued to be a pervasive stance of the Democratic Party during this era.  
After the Democratic Convention, Carter made some efforts to reach out to lesbian and gay constituents through adult media. Playboy Magazine released an interview where Carter made it clear that he would sign a bill to extend equal rights to gay people, and his wife said at the time “I do not think that homosexuals should be harassed.” Carter’s choice of Playboy Magazine as the context for discussing gay rights cloaked gay rights in an adult context, and reinforced the idea that gayness is strictly about sex, but Carter’s outreach was an important start for a Democratic Party that was still finding its way on the issue of gay rights. It was the first time a Presidential candidate specifically committed to support gay rights legislation and this began to break the ‘conspiracy of silence’ surrounding the issue. 
Huge Victory in California – Decriminalizing Homosexuality
One of the important victories for gay rights during the post Watergate era, was Willie Brown’s passage of “consensual sex legislation”, Assembly Bill 489. The 1975 bill removed California’s anti-sodomy laws that criminalized sex between consenting adults of the same gender. Sodomy laws had long been used in states around the nation to criminalize homosexuality.While the laws had been used in practice sporadically, the practical impact was to silence lesbians and gay men about their sexuality. If someone came out about being gay and having a partner, sodomy laws made it that this person was in effect admitting to being a criminal. Since the formation of Alice, the organization had been working closely with Willie Brown to remove California’s sodomy law. Passage of this legislation marked an important step in protecting the civil rights of gay people and an important legislative victory for Alice.
Alice in 1977
With the election of President Carter, the passage of Willie Brown’s consensual sex acts legislation, and the election of Alice’s slate of candidates, Alice became better known to the community. With all of this success, more people wanted to get involved in politics and the Alice B. Toklas Club. An election was held in 1977 for Club President, and membership grew significantly. 107 members showed up to vote for the elections and 26 members were elected as officers to the club. With these elections, Alice’s moderate, professional insider style became a sore point for many in the community who felt the club didn’t speak for them at that time.
1977-1978 – the Moscone / Milk Period
Social change brings about the most raw of human emotions and Harvey Milk’srise to power awakened the city, bringing about new possibilities, and unfortunately new hostilities that had not been experienced in the past.
After two unsuccessful bids for Supervisor in 1973 and 1975, Harvey Milk was elected Supervisor after a new system of district elections was established in 1977. Known as the “Mayor of Castro Street”, Harvey was the first openly gay man elected to the Board of Supervisors, and he won as a grassroots candidate without the support of Alice. Members of Alice believed Harvey was too left in his politics to win, so the Club backed another gay candidate, Rick Stokes. But Harvey did win the election and made history, leaving Alice to consider its decision. One important historic aspect of Milk’s win was the recognition that grassroots politics could be successful. Alice members believed that politics was an ‘insider’ game, and that outsiders couldn’t make it into positions of power. Milk’s win disproved this and set about a rethinking of San Francisco politics for years to come.
Because Alice did not support Harvey, his supporters formed the “Gay Democratic Club” which eventually became the Harvey Milk Democratic Club after Harvey was assassinated. The ‘Milk Club’ ultimately became the left-leaning voice in LGBT politics for the city, while Alice became positioned as the ‘moderate’ voice in LGBT politics. A third club, the Stonewall Democratic Club, formed in Los Angeles and established chapters all over the country, with a San Francisco chapter established for much of the 1970’s and 1980’s. This club also became quite influential in San Francisco politics for some time, especially under the leadership of Gary Parker. With Stonewall and Milk, San Francisco now had three clubs for gay activists to choose from, whereas Alice had been the only game in town just a few years before.     
In 1977, when Harvey Milk and George Moscone were newly elected, the Alice B. Toklas Club met with Mayor Moscone. At this meeting he made commitments to Alice members about many issues: 
1977 Community Issues:
Police Commission: The Mayor agreed to appoint a gay person to the city Police Commission. He also praised the Toklas club for its resolution in support of Police Chief Charles Gain, a liberal policechief he appointed.
Community Center: Moscone supported city funding for the development of a Gay Community Center, explaining that the Center at 330 Grove was in a building that was to be torn down for construction of the Performing Arts Center. He promised funds would be made available.
Mayor’s Open Door: The Mayor established himself as a gay political ally, encouraging activists to work with Supervisor Harvey Milk to advance pro-gay legislation for him to sign. He also announced he had out gay people on his staff that would work with the community on community goals.
Pride Funding: He said he favored city funding of the annual Gay Freedom Day Parade from the city hotel tax, a long-time goal of the community.
Unity: Moscone urged Alice members to put aside their feelings that were evident from the campaign about Harvey Milk and to unite behind the winner for progress that could benefit the gay community.
Political Action and Progress
1978 was a year of clashes between the newly active “religious right” and the “feminist left.” Five years after the Supreme Court made it’s ruling on Roe vs. Wade, the religious right began to organize all over the country, linking feminism and gay rights as shared targets in their cultural war. Jerry Falwell created his “Moral Majority” and Anita Bryant waged a Save our Children campaign in Florida, while in California, State Senator Briggs jumped into the act by placing his Measure 6 on the ballot to ban gay people from teaching. The “No on 6 Campaign” backfired on Briggs and turned out to be a huge success story for LGBT Californians. Briggs lost his initiative after Alice and other LGBT organizations rallied together across the state. The campaign became a context for training young activists and supported networking among LGBT organizations. The conservative loss temporarily slowed the religious right’s crusade against gays. Progress was made on other fronts that year as well. The American Psychiatric Association finally removed homosexuality from its list of pathologies in 1978, which was a crucial step in helping American culture to shift its attitudes towards gay men and lesbians.    
Violence and Turmoil
While some progress was made in 1978, ultimately the year will be remembered most for its great tragedies. On November 27th, 1978, Supervisor Dan White climbed through an open window of City Hall and gunned down Supervisor Harvey Milk as well as Mayor George Moscone. It was a day when everyone grieved and the assassination changed San Francisco forever.
Dan White assassinated Milk and Moscone just days after the Mayor signed into law Milk’s Gay Rights Ordinance that White opposed. The LGBT Community held a massive, peaceful candle light vigil in Harvey’s memory following news of the murders. Later that year, White was brought to trial outside of San Francisco, and a suburban jury found him guilty of “voluntary manslaughter” and gave White 7 years in prison, a sentence widely criticized as too lenient. The jury supported the verdict on the grounds that he had eaten too many Twinkies and his blood sugar was so high, that he snapped and went temporarily insane. This infamous “Twinkie” defense sparked outrage within the LGBT community, for justice had not been done. Following the verdict, the “White Night Riots” broke out in San Francisco, and over 160 people ended up in the hospital. The riots directed anger at the SFPD, as Dan White had been a former police officer, and a string of police related incidents occurring around the time of the verdict led to an environment of tension between the community and the police. (For more about the Police and LGBT community tensions at that time, Uncle Donald’s Castro Street history has some interesting information: http://thecastro.net/milk/whitenight.html )
Amidst all of this turmoil, the leadership of Alice was torn about how to respond. Club President Steve Walters remarked:
“It’s been almost two weeks since the infamous Dan White non-verdict, and I’ve read and heard an infinity of comments and reactions about the trial, and events that night at City Hall. I remain conflicted, torn between my dislike of violence and my rage at the injustice of the jury’s decision. Harsh critics have emerged, focusing on the violence of that night, but ignoring the events that led up to it: the murders of George and Harvey, increased physical attacks against gay men and women, the infamous Pegs Place affair, and the equally infamous police investigative whitewashing, removal from the Dan White jury of a man solely because he was gay, and finally, the ultimate immorality and insult of the jury’s decision.”
As Walters mentioned, a string of issues had been creating tension between the community and the SFPD. The Pegs Place incident involved officers entering a lesbian establishment and assaulting women patrons with little action taken afterwards by the SFPD to respond to the incident. Walters and other members of the community charged that the SFPD had ‘whitewashed’ the facts of the Dan White case to protect one of their former officers. With anger mounting over all of these police issues, Alice became even more intensely focused on the issue of police misconduct, writing letters to the Mayor and requesting action to address the situation.   
The Early 80’s – Growing Pains, Separatism, and Different Agendas.
Lesbians and gay men shared some common political goals in the early 80’s (such as supporting Senator Art Agnos’s Assembly Bill 1, banning job discrimination against gays and lesbians), but issues such as economic justice for women and gay men’s sexual revolution came to be viewed at times as conflicting sets of priorities. When members of the community were appointed to positions of power, people began to raise questions such as “Can gay men in power truly speak for lesbians?” or “Are lesbians truly sensitive to the issues of importance to gay men?”
Former Alice Co-Chair Jo Daly was the first member of the lesbian and gay community to be appointed to the San Francisco Police Commission, but Alice member Bruce Petit wrote a letter to the club raising concerns about her appointment that echoed many of the divisions of the time.  He said:
“Feinstein fulfilled her major campaign pledge to the Gay community by appointing one of their own to the five-member body that directs the police department. But some activist elements faulted Daly as short on progressive credentials, too close of an ally to the Mayor, and unable to represent Gay men—who are said to have more problems with the police than lesbians”
Bruce Petit continued his letter, quoting lesbian Police Commissioner Jo Daly as saying:
“Women make 53 cents for every dollar men make. Two white gay men putting their incomes together are better off than anybody else in society. For Gay activist males to make their major concentration maintaining glory holes—when La Casa, the only home in the county where battered women and children can go, is going out of business because there is no money—that leaves us angry!” 
The tension between lesbians and gay men in this period was heated, and some of the accusations on both sides now seem unfair. The conflicts were perhaps especially acrimonious in Alice because male leadership had up to that point dominated the club. But despite the divisions that erupted at this time, there were also important unique perspectives that were affirmed out of that discourse. The community began to affirm that women have a truly unique perspective from men, and people of both genders have unique contributions to make. “Gay” was no longer used as an umbrella term for the community – “gay” became a word largely designated for men, and “lesbian” became an important, distinctive term of choice for women. 
Women in Leadership Positions
One of the most significant areas of progress for the community in the early 80’s was the rise of women to leadership positions, beginning the careers of some women who would go on to the highest offices in the nation. Barbara Boxer was elected to congress with outspoken support for LGBT issues as a central part of her campaign message.
Carole Migden became the President of the Harvey Milk Democratic Club and ran for Community College Board, laying the groundwork for her later Board of Supervisors, Assembly and State Senate races.
Because of the male dominance of gay democratic clubs in the early years, lesbians worked outside of the Democratic Club system to become politically active in their own right. After Harvey Milk was assassinated and Harry Britt was appointed as his replacement on the Board of Supervisors, there was a feeling among many women that a woman should have been appointed to support gender balanced leadership. Out of the frustration of many women at being held out of political office, a group of politically active women formed the Lesbian Agenda for Action. Women like Roma Guy, Pat Norman, Martha Knutzen, Fran Kipnis and Carole Migden began to work outside the democratic club establishment in this organization as a way to assert power outside of a system that was heavily dominated by men. Out of this activism, Carole Migden eventually became the chair of the Democratic Party bringing gay staff with her. Roger Sanders, her staffer, computerized the Democratic Party system and helped her modernize the Democratic Party’s voter turnout process.   
After the Milk/Moscone assassinations, San Francisco moved back to citywide elections for supervisorial races. It was believed by some that district elections were a large part of the divisiveness that led to Milk’s assassination. Others felt that district elections were crucial to representing San Francisco’s diversity. Alice membership overwhelmingly supported the concept of district elections in 1980, with 200 members voting to support district elections and only two members dissenting.
1980 Democratic National Platform:
Alice worked very closely with the Harvey Milk Democratic Club in 1980 to successfully lobby Jimmy Carter (with the help of Mayor Feinstein) to include a gay plank in the Democratic Platform.  The convention that year had a record 71 openly lesbian and gay delegates, with 17 coming from California. Alice Delegates included Harry Britt, Gwenn Craig, Jim Foster, Bill Kraus and Anne Kronenberg (one of Harvey Milk’s Aides).  Mike Thistle went on behalf of the Milk Club and Alice member Larry Eppinette attended as a Carter delegate. Alice also sent many non-gay delegates including Kevin Shelley, among others.
Fighting Police Entrapment:
Law enforcement issues continued to be a major issue of concern for Alice, as Senator John Foran authored SB 1216 to legalize police entrapment and require that a defendant prove he/she is of ‘good character’, not predisposed to commit a crime, if loitering.
Gay Men campaigning for office:
John Newmeyer became California’s first openly gay man to run for congress in the 2nd District, and Alice endorsed his unsuccessful, but historic first bid. TomAmmiano ran for School Board for the first time in 1980, starting a long career in San Francisco politics, and Alice endorsed Tom in his first race.  Harry Britt was also appointed by Dianne Feinstein to replace Harvey Milk in office. This appointment was a source of contention for some in the community as many women felt that Ann Kronenberg, Harvey Milk’s legislative aide, should have been appointed to office to support gender balance. Britt continued to serve on the Board in the 1980’s focusing particularly on tenant’s rights issues.
Alice comes out officially as a “Gay Democratic Club” under Club President Connie O’Conner
During the early eighties Connie O’Conner was elected President of Alice and ran a slate of candidates for the Democratic County Central Committee. Louise Minnick, Randy Stallings and Connie O’Conner all won as Alice’s candidates in 1980. Connie also successfully made a motion to change the name of the club to the “Alice B. Toklas Gay Democratic Club.” This was very controversial at the time and many longtime Alice members such as Jim Foster and Robert Barnes argued that straight club members might feel alienated if the club was explicitly identified as a “gay democratic club”. Alice voted to change its name and move towards greater openness, while straight San Francisco allies continue to this day to sign up to be a part of Alice.
Alice wins seats on the San Francisco Democratic Central Committee
In 1980 Under the leadership of club President Connie O’Conner, Alice ran a slate of candidates for the Democratic County Central Committee and Louise Minnick, Randy Stallings and Connie O’Conner won seats on the committee. Previously only Milk club members like Ron Huberman and Gwen Craig represented the LGBT community on this committee.
Mayor Feinstein Recall Fight
In 1983, a heated battle ensued over attempts to recall Mayor Feinstein, with recall supporters citing her veto of domestic partners legislation and her support of landlords over tenants. Anti-recall supporters cited Feinstein’s longtime support for gay legislation and her willingness to put funds towards helping people with KS and AIDS at the very beginning of the epidemic. Alice voted 137 to 73 to oppose the recall effort and became very active in fighting the recall. Afterward, Feinstein was very grateful to Alice and instituted regular meetings with the club to keep in communication with the community about issues.
HIV and AIDS – The Total Focus of the Mid 1980’s and Early 90’s
The fight over the Feinstein recall was one of the last divisive fights between left and moderate LGBT democrats for a while, as the energy and focus had to go 100% to saving lives. San Francisco was hit especially hard by the AIDS epidemic and some of our brightest people in the community were lost. With them went much knowledge and skill that could be shared and passed down in the community. Many died early in the epidemic, such as the Founder of Alice, Jim Foster and former Alice President Robert Cramer who passed away just a few years before protease inhibitors were introduced. Many continued to die after 1994, and this had enormous impact on the community. Tony Leone, a longtime member of Alice, and a dedicated activist for gay rights, passed away in 1999. Dick Pabich, the legislative aide to Harvey Milk who went on to become a campaign consultant to Carole Migden passed away in 2000. Many friends in politics of these brilliant, dedicated people wondered how they could continue without their guidance and years of experience. A whole generation of knowledge was lost.
Alice jumped into the fight against AIDS early, as friends were dying, and the Federal Government was being completely unresponsive. Bay Area representatives Phil Burton and Barbara Boxer worked tirelessly to get federal support, while President Reagan still refused to even mention the word AIDS. It was a battle to get government to pay attention about something that was killing our community. As a result of this, a new slogan became popular among activists after the formation of ACT UP in 1987: “Silence Equals Death”. Activism against AIDS would increasingly be shaped as a direct battle between those who perpetuated the Conspiracy of Silence, and those who recognized that silence could kill them. 
The 1984 Democratic Convention in San Francisco
In 1984 the Democratic Convention was held in San Francisco three years after the initial discovery of HIV/AIDS and long before effective treatments were available. Alice representatives Sal Rosselli and Connie O’Conner were both elected as openly gay Gary Hart delegates to the Convention, and they watched Jesse Jackson speak to the convention floor after his first historic run for President. (Four years later Jackson would make his Rainbow Coalition Speech at the 1988 Convention where he famously included “gay Americans” as part of the Rainbow Coalition). Walter Mondale and Michael Dukakis both lost their elections, but progress continued for the gay and lesbian community as the national Democratic Party began to publicly include the community as part of their public agenda.
Despite progress on some fronts, the fight against AIDS continued to be enormous and at sometimes overwhelming for the members of Alice. Club President Sal Rosselli wrote in the January 1985 edition of Alice Reports:
“While talking to friends over the Holidays, I often heard this statement characterizing 1984: Too intense, too much work; here’s to a relaxing 1985. Thanks to our active membership of almost 600, Alice has accomplished a great deal during the last year… Of course there is still so much to be done; but let us be proud and grateful for all we have accomplished. The year ahead looks like it may be less hectic and may afford us… more time to organize from within and focus on our primary agenda. That primary focus must be developing national, statewide and local plans to combat AIDS.”
By 1985, as can be seen in this statement, Alice was challenged by the fight against AIDS. After a depressing election loss against Ronald Reagan, and continuing struggles to save friends with few treatments available, these were difficult times. Alice’s primary focus would continue to be fighting AIDS until the partial success of halting the virus came with protease inhibitors in the mid ‘90’s, which allowed for a broadening of the political agenda.
The Larouche Initiative:
Alice and AIDS activists did not get a reprieve after 1985 – things got worse before they got better. In 1986, Lyndon Larouche capitalized on AIDS-phobia and placed his infamous Proposition 64 on the ballot to quarantine people with AIDS, using the clearly faulty logic that AIDS could be spread by mosquitoes. Even in the early stages of the virus, it was obvious that mosquitoes could not spread the disease; otherwise it would not have disproportionately impacted specific groups. Fortunately, California voters struck down the initiative, once again sending a message to the radical right that measures like the Briggs and Larouche Initiatives would not be supported in California. Alice worked very hard to defeat the Larouche Initiative, contributing to the opposition’s success.
Alice Pickets KQED over PBS Frontline Special on AIDS
In 1986 Alice became very involved in the fight against media defamation of people with AIDS under the leadership of Club President Roberto Esteves. San Francisco’s local television station KQED ran a PBS Frontline news story on a man with AIDS named Fabian Bridges who they presented as a ‘typhoid mary’. The reporters described Bridges as an HIV positive homosexual who had six partners a night and refused to stop having sex, regardless of his HIV status. The reporters didn’t mention that Bridges continued to have sex because he was in financial dire straights and he was a prostitute. The reporters also failed to mention that they paid Bridges to set up their exploitative interview. Alice joined with the Milk Club to protest the KQED Bay Area showing of this story to fight the media stereotype of presenting people with AIDS as predators. After this protest, KQED responded by appointing its first openly gay member to their community advisory board. This effort was one of the early efforts to fight media defamation of gays happening right after the formation of the Gay and Lesbian Alliance Against Defamation (GLAAD) in 1985.
1986 Alice’s endorsement critical in Jackie Speier winning Assembly Race
One of the Bay Area’s most prominent leaders, Jackie Speier, became first known to many as an aide to Congressman Leo Ryan who was assassinated in the Jonestown massacre. Speier was in Guyana during the Jonestown Massacre and while attempting to shield herself from rifle and shotgun fire behind small airplane wheel, Speier was shot five times and waited 22 hours before help arrived. Speier survived and returned home from the incident going on to serve as a member of the San Mateo County Board of Supervisors. In 1986 she ran for an open seat on the California State Assembly against Mike Nevin. Nevin had secured the endorsement of the Burton/Brown San Francisco political establishment, as well as the Harvey Milk Democratic Club, but Alice was Speier’s first club endorsement, and fighting against tough odds, she wound up winning. Alice’s support proved critical as Speier won the race by only a few hundred votes. Speier went on to serve as a member of Congress representing nearly half of San Francisco, as well as San Mateo and the Peninsula. Alice member Ron Braithwaite organized support for Speier in her first race for Assembly and for many years Speier marched in the LGBT Pride Parade with Alice and always considered Alice to be ‘her club’. 
1987 Art Agnos wins race for Mayor
Alice shocked many in 1987 with its decision to make no endorsement in the race for Mayor between liberal Assemblyman Art Agnos and centrist Supervisor John Molinari. Molinari had been the favorite of Alice for some time and it was assumed by many that Alice would endorse him, but Agnos had many supporters who were able to block an endorsement of Molinari on a 275 to 206 vote.
1990s-2000s: An Organized Constituency Finds its Power
During the 1970’s and 1980’s, Alice and the LGBT Community of San Francisco made enormous progress in challenging the conspiracy of silence that had prevailed in earlier decades. In the 1990’s and 2000’s, the LGBT Community started winning larger numbers of local electoral victories in San Francisco. It was no longer enough for the movement to rely upon straight allies (although Alice’s straight allies would continue to be crucial and would rise to prominence at all levels of government); but LGBT people would finally begin to win office in San Francisco in significant numbers, and would be appointed to various City commissions and departments holding offices in policy areas as diverse as Law Enforcement, Human Rights, Transportation, Education and Health. With this expansion of ‘out’ LGBT local representation and influence, Alice supported candidates began passing legislation that would implement changes for LGBT civil rights, not only in San Francisco, but far beyond the City limits.The 1990 “Lavender Sweep”
While San Francisco was confronting AIDS, there was an urgent sense that LGBT people needed to be in positions of power. It was not enough anymore to have friends of our community supporting us. We needed a place at the table. 1990 saw the culmination of two decades of political work by Alice and the Milk Club to bring our community to the table. All the hard work had finally come to success when the two clubs worked together in the historic 1990 Lavender Sweep (the first of two sweeps, the second being in 1994).
The 1990 sweep successfully pushed several candidates over the top to become elected leaders. Lesbian Donna Hitchens won citywide as Superior Court Judge. Lesbians Carole Migden and Roberta Achtenberg won races to join the Board of Supervisors, and Tom Ammiano became the first gay man elected to the San Francisco School Board. Years of work had paid off for all the candidates who had been trying to get into office, and work by Alice was crucial to these victories.
Alice Involvement in the Lavender Sweeps and broader community work:
Campaigns are not won by leaders simply rising to power. It takes incredible work and commitment of people in the community to make a difference. It takes fundraising. It takes strategy. It takes coalition building. It takes development of successful messages and professional campaign materials. It takes enlisting support, one endorsement at a time. And it takes courage to stand by your vision even in the face of opposition. That’s exactly what Alice and the community did to create the 1990 and 1994 landmark elections. There are countless heroes in these efforts that deserve to be recognized, and a few of these are Dick Pabich, Jim Hormel and Mark Leno who raised money for numerous community efforts throughout these years. Jim Hormel not only supported LGBT candidates, but also raised enormous sums for the new Public Library’s Hormel Center for LGBT research. Mark Leno became a lead fundraiser and strategist for building the new LGBT Community Center] and one of Carole Migden’s top fundraisers. Dick Pabich not only helped Carole Migden raise funds to get into office, but he became a chief fundraiser for Senator Barbara Boxer, paving the way for one of our nation’s most outspoken national advocates for LGBT rights in the United States Senate. Robert Barnes and campaign consultant Jim Rivaldo were instrumental in establishing a professional campaign operation for LGBT advocacy. Barnes became a key advisor to LGBT leaders and Rivaldo became a lead graphics designer for slate cards, billboards, and countless materials done pro-bono for LGBT causes during this time. Carole Cullum at the law firm of Cullum and Sena also provided crucial legal advice to LGBT campaigns while long time LGBT activists Martha Knutzen, Fran Kipnis and Denny Edelman gave non-stop volunteer work on behalf of community causes throughout these years as well. There were so many others, but this gives a small sense of the broad coalition of work that was being done to lay the foundation for LGBT political power and LGBT social services in San Francisco.
National Repercussions of the 1990 Lavender Sweep
The Lavender sweep had national repercussions as it became a precursor to LGBT campaign organizing prior to the 1992 presidential election, and established the San Francisco lesbian and gay community as a base of power that could help win local, state and national elections in the future.
1992 “The Year of the Woman”
In 1992 California made history by sending Dianne Feinstein and Barbara Boxer to the U.S. Senate and the LGBT community played a key role in that success. Political pundits billed 1992 as “The Year of the Woman because women candidates made successful efforts to break into the male dominated US Senate, which had only 2 female members in office at that time. Feinstein’s campaign used the slogan ‘2% is good for milk but not for equality’ in the US Senate. Senator Barbara Boxer won the election for US Senator in 1992 against radio commentator Bruce Herschensohn by 5% of the vote with the crucial assistance of the LGBT community. Her openly gay political consultant and fundraiser Dick Pabich was a key strategist for the Boxer campaign. Pabich adopted a strategy for Boxer to explicitly build a California majority of women, gay men and minority constituencies. Alice helped boost turnout in San Francisco to provide the margin of difference in that campaign.
Bill Clinton becomes President
That year Alice became an important player in Democratic Presidential politics as well. Robert Barnes, chair of the Alice B. Toklas Club had this to say about the approaching presidential election in the May 1992 edition of Alice Reports:
“Alice demonstrated its Democratic Party savvy in putting together a winning slate of delegates for the Clinton Presidential Caucus. Alice is the first major Democratic Club, and thus far the only Lesbian/Gay Democratic Club, to endorse Bill Clinton for President… With Alice’s support, lesbian Supervisor Roberta Achtenberg was the caucus’ top female vote getter.”
As an early endorser of Bill Clinton, Alice established itself as a “Friend of Bill’s” before other Democratic Clubs had gotten in the act, and Alice helped propel Roberta Achtenberg into the limelight of the Democratic Convention, supporting her eventual selection as Housing Undersecretary.
At the Democratic Convention, Bill Clinton was outspoken in his support of the LGBT Community, breaking the ‘conspiracy of silence’ that had long dominated national discussions of gay issues, even among Democratic politics. At the 1992 Democratic Convention, Clinton specifically talked about “gay people”, [43 minutes into speech], whereas in the past, democratic presidential contenders such as George McGovern and Jimmy Carter had said they supported “Civil Rights” when referring to LGBT people, but not actually identifying directly with our community at the Democratic Conventions. Clinton went on to appoint Roberta Achtenberg as Undersecretary of Housing, prompting archconservative Jesse Helms to famously refer to her as “that damn lesbian!” Clinton also appointed Democratic fundraiser and gay philanthropist Jim Hormel to be a U.S. Ambassador to Luxembourg, the first openly gay person to serve as a U.S. Ambassador.
Alice supports Mayor John Laird of Santa Cruz in his 1993 run for Assembly:
In September, 1993, many Alice members volunteered in the campaign to elect openly gay mayor John Laird of Santa Cruz to the State Assembly, as was reported by co-chair Mathew Rothschild in the Sept. 1993 edition of Alice Reports. Nearly a decade later, John joined Mark Leno as the first two gay men to be elected to the Assembly in 2002.
Susan Leal Replaces Roberta Achtenberg on the Board of Supervisors.
Susan Leal was appointed June 7th, 1993 by Mayor Frank Jordan to serve on the Board of Supervisors succeeding Roberta Achtenberg. Susan joined Alice in endorsing Willie Brown in 1995 and began a strong relationship with the club, building towards her run for mayor, which Alice endorsed, in 2003. As a Latina lesbian, she continued the tradition of broadening San Francisco’s LGBT leadership diversity. 
The 1994 “Lavender Sweep”
In 1994 San Francisco had a second “Lavender Sweep” with openly gay candidates Susan Leal, Carole Migden and Tom Ammiano being elected to the Board of Supervisors, and Leslie Katz and Lawrence Wong winning election to the Community College Board. Alice was instrumental in the fight, working in coalition with the Milk Club. Susan Leal went on to Chair the powerful Finance Committee on the Board of Supervisors, ensuring that much needed funds would be directed towards HIV and AIDS services. With the 1994 Lavender Sweep, Alice and the LGBT Community demonstrated a firmly established base of power in San Francisco. The community that previously needed district elections to win a single elected office was now a major power broker sweeping several candidates into numerous offices for a second time. San Francisco’s political establishment would from this point forward be walking in close step with the LGBT community and its political goals.
Willie Brown Elected Mayor:
With newly imposed term limits, longtime community ally Assemblyman Willie Brown was forced out of office and ran for Mayor in 1995. A major power broker for the state, it was believed that he could beat conservative Mayor Frank Jordan and bring unity to a deeply divided city. Prior to his campaign, Willie Brown met with Carole Migden, Alice Chair Mathew Rothschild, Milk Club Chair Martha Knutzen, Fran Kipnis and other LGBT community members to plan his run for Mayor. In the past, the lesbian and gay community had been on the ‘outside’ in brokering power for the city, but with the Lavender Sweep, lesbian and gay leaders were now recognized as a strong political force in San Francisco and Speaker Brown formed a direct alliance with the community in his race for Mayor. Brown won the election and went on to appoint more LGBT people to lead city departments and commissions than ever before in the city’s history. He also signed the Equal Benefits Ordinance to require businesses that contract with the city to provide equal benefits to domestic partners that are offered to married couples.
Carole Migden replaces Willie Brown in the Assembly:
Willie Brown, the legendary “Ayatollah of the Assembly” who represented San Francisco and the Democratic Party incredibly well for decades, including early support for LGBT rights through his consensual sex laws, stepped down due to newly imposed term limits and Carole Migden replaced him. Alice’s longstanding relationship with Willie Brown and Carole Migden helped position Migden to become the second LGBT person ever sent to the California State Legislature. Carole won election to the seat later in 1998.
Labor Organizing – Training for Alice Members
Jack Gribbon was a labor organizer who trained Alice members how to organize during the Willie Brown Campaign for Mayor. A waiter who organized thousands of hospitality workers in the Hotel Employees and Restaurant Employees Union Local 2 (H.E.R.E), Jack ran Willie Brown’s 1995 field campaign and enlisted Alice members to spend months before the Mayoral election tirelessly calling voter lists, identifying Brown supporters and walking precincts to turn voters out on Election Day. Jack originally got involved with Alice during the Domestic Partnership campaigns of the 1980’s, and his training became a model that worked. Alice member Fran Kipnis, for instance, turned out 99% of her own precinct in 1992, the same year that Barbara Boxer won her U.S. Senate race by 5%. Alice would sign up precinct captains, identify voters and track down if they were voting by mail or voting on Election Day, and would work relentlessly on Election Day until the polls closed, taking nothing for granted until the fight was over. Gribbon’s approach continues to be the model the club uses to this day, and LGBT areas of San Francisco such as the Castro District are known to be some of the highest turnout districts in the city every Election Day.
Leslie Katz Elected to the Board of Supervisors:
In 1996 Leslie Katz was elected to the Board of Supervisors after being appointed by Mayor Brown earlier that year. Alice worked tirelessly on Supervisor Katz’s campaign, as Leslie had been a longstanding member of the club who had already shown her strong leadership capabilities over many years. One of her staff, Geoff Kors, would go on to become the Executive Director for Equality California.
Tom Radulovich elected to BART Board:
Tom Radulovich was elected to the Bay Area Rapid Transit (BART) Board of Directors in November 1996 representing the 9th District in San Francisco. An Alice supported candidate over the years and gay official, Tom later made a run for the Board of Supervisors. He has served on the BART Board for a decade while working tirelessly on housing and transit issues, taking a strong leadership role in groups like the San Francisco Planning and Urban Research (SPUR) and the Housing Action Coalition (HAC).
The Equal Benefits Ordinance: San Francisco Flexes its Muscles.
In 1996, San Francisco enacted an ordinance that had a broad impact on the entire nation, and Alice supported leaders were instrumental to passing this legislation. Supervisor Leslie Katz, Supervisor Tom Ammiano, Supervisor Susan Leal, and Mayor Willie Brown together championed San Francisco’s landmark Equal Benefits Ordinance to require that businesses that contract with the City of San Francisco must provide equal benefits to domestic partners that they give to married partners. This law swept the nation in its impact, paving the way for hundreds of businesses to adopt domestic partnership benefits. Some businesses like United Airlines initially fought the ordinance but San Francisco leaders stood firm in demanding equality and the City prevailed. The ordinance became a model for similar laws passed throughout the nation, and the model for Christine Kehoe’s California Assembly Bill 17, signed by Governor Davis, to require businesses which contract with the state of California to provide equal benefits to domestic partners. This is one clear example where a San Francisco ordinance passed by Alice supported legislators managed to change not only the City of San Francisco, but also California and the nation.
Susan Leal Becomes San Francisco City Treasurer:
In 1998 Susan Leal was appointed to become the City Treasurer, where she managed the City’s $3 billion portfolio. Her investment policies and decisions produced a greater return during her period of service than any major county in the state. In 2001 Susan was elected Treasurer for another term with 87% of the vote, due to her reputation as a strong, effective manager of the city’s finances. Alice endorsed Susan’s candidacy and campaigned hard for her victory.
Domestic Partnership: New laws enacted for California.
Alice strongly supported Carole Migden as she went to the Assembly and introduced AB 26, which created a registry for Domestic Partnership and gave Domestic Partners many of the same rights (such as hospital visitation rights) that married couples enjoy. Later, Assemblywoman Jackie Goldberg would introduce AB 205, an extensive set of rights and responsibilities for domestic partners that almost mirrored marriage, building on Carole’s earlier work.
Mark Leno Elected to the Board of Supervisors
In 1998 candidate Mark Leno won election to the Board of Supervisors after being appointed earlier that year. Leno had spent years prior to his time on the Board of Supervisors working as a lead organizer and fundraiser for the LGBT Center. He was a key player in getting the Center built. Leno was also a longstanding member of Alice before his rise to office. As a Supervisor, Leno led the effort to create a transitional housing facility designed specifically to address the needs of LGBT homeless youth as well as passing the City’s first Inclusionary Housing Ordinance to mandate that developers construct a percentage of affordable housing as they develop in a city with skyrocketing housing costs.
Proposition 22 – The Knight Initiative:
In 2000, California voters were subjected to a divisive ballot measure that was designed to turn back the clock on LGBT rights – Proposition 22, the Knight Initiative. The measure was written to clarify that out-of-state marriages could not impact California marriage law regarding same sex couples. Voters passed the measure, despite the vigorous efforts of Alice and our LGBT leaders. Mark Leno (who would later introduce AB 849, the Marriage Equality Bill) worked especially hard to stop the initiative, traveling as a statewide campaign spokesman against the measure. Alice worked tirelessly to stop the Knight Initiative, and continues to be part of marriage equality organizing.
Robert Barnes deserves special mention because of his work on behalf of Alice, his commitment to LGBT rights, his work at the California Democratic Party, and his often-controversial approach to politics that dominated Alice for much of the late ‘90’s. He was an Alice Co-Chair who became a close advisor to many of San Francisco’s most successful politicians. Carole Migden, Mark Leno, Willie Brown, Dennis Herrera, Leslie Katz, Susan Leal, Tom Radulovich, Natalie Berg, Mabel Teng, Donna Hitchens, Kevin McCarthy, School Board members Dan Kelly, Juanita Owens, Lawrence Wong, and many other San Francisco officials worked closely with Robert Barnes at various points in their careers. 
He grew up in San Francisco in a working class family closely connected to politics. His father was a machinist and labor activist and in 1977 ran for District Supervisor against Dan White. Robert got into politics himself running for the BART Board and the Board of Education, but after losing these races, (one of them being to Tom Ammiano in his race for the Board of Education) Robert got involved in politics behind the scenes. He was particularly involved in Democratic Party activities and was the Chair of the California Democratic Party’s Gay Caucus for many years.
San Francisco has some of the most colorful, bombastic, and sometimes brilliant people in politics. Robert was one of them. He had an incredible sense of humor and got away with controversial jokes that most professionals would never dream of trying. He could say things that were unthinkable, throwing insiders out of their comfort zone, then warming them back up with charm, and closing the deal with masterful delivery. He was an extremely funny person in a somewhat bland professional scene. Robert Barnes, Chair of the Alice B. Toklas Club and Prominent Democratic Party Activist, died on August 9th, 2002 of Guillain-Barre Syndrome, just months before his candidate, Mark Leno, became the first gay man elected to the California State Assembly.
Robert’s work in the Alice B. Toklas Club:
For several years the Alice B. Toklas Club had been struggling during the AIDS epidemic, as members became focused on saving lives and had little time or energy to spare on Democratic politics. People were exhausted. During this vacuum of leadership at Alice, Robert Barnes almost single-handedly resurrected the club to continue political work.
While Robert took on leadership at Alice, he simultaneously developed a business in political consulting specializing in slate mail. The period where Robert took the lead at Alice was controversial because many of the political goals of the club seemed to be designed by Robert with his business clients in mind. Many people in the community felt that Robert was serving his own goals at the expense of the community. This fueled the Alice/Milk longstanding rivalry – the belief that Alice was becoming a front for Robert’s political work. But Robert worked on a variety of projects that were widely supported as well, such as the School Bond campaign and the 1994 Lavender Sweep. He worked relentlessly on the Octavia Boulevard campaign and worked very closely with Alice to promote the San Francisco Women’s Building, supporting their right to remove a bar from the premise and make it a safe space for all women using the facility. Robert also ran the campaigns of many important LGBT candidates and he worked tirelessly as the State Party Chair of the LGBT Caucus. His positioning Alice early with the Clinton campaign also proved to be invaluable for the community.
Perhaps Robert’s most important contribution was to bring numerous young people into politics, showing them how to be professional advocates for the LGBT community. He invited people who had no experience with politics to get involved, teaching them how to manage campaigns, how to work with elected officials, how to put together slate cards, how to design ballot arguments, how to raise money, how to write press releases, how to work with the state party, how to craft a winning message, and how to become successful in advancing the LGBT cause. He taught many people how to be professional leaders.
Alice / Milk Rivalries
The Alice and Milk Democratic clubs have throughout their existence been somewhat at odds with each other by virtue of the fact that the Milk Club formed out of a difference in political orientation and approach from Alice. Sometimes this rivalry has overshadowed any ability of the clubs to work together, and sometimes the two clubs have worked as if there were no rivalry at all. It’s fair to say that having two Democratic Clubs offers checks and balances on whether either club is acting genuinely in the interest of the community. Open dialogue and critique is definitely positive.
The history of tensions between the clubs could be seen from the beginning but grew to a high point in 1995 during the Willie Brown and Roberta Achtenberg campaign for Mayor. Alice endorsed Willie Brown citing his years of leadership and commitment to the community, as well as the desire to unseat Mayor Jordan with a strong, viable candidate at a time when no one could be certain that Mayor Jordan could be beaten. Roberta Achtenberg entered the race later and many members of the Harvey Milk Democratic Club supported her, wanting to see the first lesbian Mayor of San Francisco. Brown beat Jordan and Alice was absolutely critical to his victory.
The Achtenberg/Brown election was only one episode of a long period of division between the clubs. An event that further crystallized the tension was the Mayoral Election of 1999 when Tom Ammiano put himself forward as a write-in candidate late in the election cycle against Mayor Willie Brown. Ammiano waged a spirited campaign with his write-in candidacy, garnering national attention and enthusiasm, but the race exacerbated long-standing tensions between the Alice and Milk Clubs. Alice members were conflicted about the election because the club promotes LGBT empowerment, but Alice members had a long-standing relationship with Mayor Brown and were proud of his important work for the LGBT community, such as the landmark Equal Benefits Ordinance. Alice had already made its commitment to Brown before Ammiano got into the race with his write-in candidacy, so the club would have had to back out of its endorsement of a longstanding ally. Alice’s decision to stick with endorsing Mayor Brown hastened a growing divide between the two clubs.
The next major event that accelerated the rise in tension between the clubs was the 2000 supervisorial race between Mark Leno and Eileen Hansen. District elections had been reinstated that year and the Milk Club endorsed lesbian candidate Eileen Hansen for District 8, while Alice endorsed gay incumbent supervisor Mark Leno. Leno ultimately won the race because of his strong progressive credentials and history of accomplishment on the Board.
A crescendo in the long rift between the clubs came when Supervisor Leno ran for State Assembly in 2002 with the strong endorsement of Alice, while the Milk Club endorsed Harry Britt (who had been retired from elective office for over a decade). Mark Leno went on to pass progressive legislation to protect transgender people in employment and housing (AB 196) and passed the historic marriage equality bill (AB 849).
Healing the Rift
After the 2000 Leno/Hansen race, and after the 2002 Assembly race, leaders from Alice and Milk made a concerted effort to improve relations between the two clubs. Alice Co-Chair Rich Kowalewski, one of many who has been credited with working tirelessly to improve the Alice/Milk relationship, had this to say about the dynamics between the two clubs:
“Through these years, Alice has developed a good working relationship with the Harvey Milk LGBT Democratic Club. This cooperation has been possible because of ongoing dialogue between the leaders of the two clubs. I know I speak for Paul Hogan, Theresa Sparks, and Laura Spanjian when I say “thank you” Jerry Threat, Debra Walker, Robert Haaland, and Michael Goldstein for your leadership in the bridge building. We have learned to focus on the 90% on which we agree rather than the 10% on which we disagree.”
Rich, Paul, Theresa, Laura, Jerry, Debra, Robert, Michael, and Scott Wiener all did an excellent job of changing course in the direction of relationships between our two clubs. The community continues to benefit from Milk and Alice working together.
Throughout Alice’s history, most of the focus on issues and candidates had been on gay and lesbian rights. As the new millennium was ushered in, Alice supported officeholders took a lead in addressing transgender rights, making it a top priority with huge success. Shortly after his election in 2000, Supervisor Leno created the Transgender Civil Rights Implementation Task Force, which advanced changes in city policy related to transgender people. Following task force identified goals, Mayor Willie Brown named task force member Theresa Sparks to become the first Transgender Human Rights Commissioner. Leno authored the Employer Notification Law signed by Mayor Brown, requiring employers to post anti-discrimination notifications in places of business that specify that the city bans discrimination against transgender people. The Task Force addressed law enforcement issues and a joint task force between the Police and Human Rights Commission was created to address law enforcement treatment of transgender citizens. The Police Departments Office of Citizens Complaints (OCC) also adopted recommendations from the task force to implement sensitivity training and protocols regarding police interactions with transgender people. Theresa Sparks moved on to become San Francisco’s first transgender Police Commissioner, and Cecilia Chung replaced Theresa on the Human Rights Commission, thus maintaining two important commission seats. Cecilia, Theresa and other transgender leaders went beyond the work of this task force to join with community leaders in creating the transgender pride march on LGBT Pride weekend, and participated in the formation of the Transgender Political Caucus among many other remarkable efforts during this time.
The San Francisco Transgender Health Plan – A First and Model for the Nation.
The most historic advancement that came out of the work of the Task Force was a change to San Francisco’s health plan for city employees. Supervisor Leno authored and Mayor Brown signed an ordinance to change the city’s health plan to include sex reassignment surgeries, hormone therapy and other care for transgender people as part of the city health plan. The impact of this change went far beyond city employees. Insurance providers that contract with the city were now required to include transgender care as part of the benefit options available in their health coverage, paving the way for transgender healthcare benefits to be available to businesses around California and the nation. Previously, insurance providers had not even offered these benefits. Task force members were written up in full-page stories in the New York Times and other national newspapers, while Leno appeared on television and talk radio stations throughout the country to discuss the issue. The media coverage reached South America, Europe, Australia, Asia and all over the United States. This is yet another clear example of Alice supported legislators passing legislation that had an impact far beyond the City of San Francisco.
Changing Alice’s name
In 2001 under the leadership of Chair Paul Hogan, Alice made an important change to rename the club “The Alice B Toklas Lesbian, Gay, Bisexual and Transgender Democratic Club.” Alice took the lead in outreaching to the transgender community and was the first of the two major LGBT Democratic Clubs in San Francisco to include “Transgender” in its official name. The vote to change the club’s name was unanimous.
Alice Candidate Dennis Herrera becomes City Attorney
Alice member and Alice’s endorsed candidate for City Attorney Dennis Herrera made a successful run for the job first in 2000, then again in 2005. A close friend of former Alice Co-Chair Robert Barnes, Herrera has been a steadfast ally of the club, continuing his longstanding commitment to LGBT rights. Herrera took the lead in defending the City’s action to marry same-sex couples and never wavered in his commitment to LGBT people.
Mark Leno Elected to State Assembly
Longtime Alice hero Mark Leno became the first gay man elected to the State Assembly, along with John Laird of Santa Cruz. Leno continued his groundbreaking work for the LGBT community with legislation such as Assembly Bill 196, signed by Governor Davis, which banned discrimination against transgender people in housing and employment. The bill protects transgender people in all areas of California from discrimination, and even strengthened protection in localities that previously banned transgender discrimination before the law. San Francisco’s local ordinance banning discrimination against transgender people had few actual remedies for violation of the law. With changes to state law, employers and landlords now face serious charges if they discriminate against transgender people in employment or housing.
California Legislature creates the LGBT Caucus
LGBT statewide activism showed enormous progress in the year 2002 as Assemblymembers Mark Leno, John Laird, Jackie Goldberg, Christine Kehoe and Senator Sheila Kuehl formed the California Legislature’s first LGBT Caucus. The five members saw the passage of crucial legislation signed into law including Leno’s AB 196 to ban discrimination against transgender people in employment and housing; Kehoe’s AB 17 to require companies that do business with the state of California to provide equal benefits offered to domestic partners and married couples; Goldberg’s AB 205 which upgraded domestic partnership legal rights and responsibilities in California to almost equal status to marriage; and Laird’s AB 1400 amending the Unruh Act to include sexual orientation and gender identity to the categories protected from discrimination in public accommodations.
Bevan Dufty Elected to the Board of Supervisors
In 2002, Longtime Alice member and gay candidate Bevan Dufty was elected as the Supervisor for the Castro in District 8. Dufty created an Improvement District for the Castro and worked closely with local neighborhood groups on a series of local changes that were designed to keep the Castro safe, clean and a place we can all take pride in. Bevan has worked with the State Library Commission to pursue funding for the LGBT Historical Society to expand its operations into a Castro facility, and he has been a tireless fighter for LGBT issues at City Hall.
Alice Friend Nancy Pelosi Becomes Democratic House Minority Leader
In 2003 Nancy Pelosi made a successful run for leader of the Democratic Party in Congress, which preceded her becoming Speaker of the House in 2006. The highest-ranking woman in office in American history,Nancy got there largely because of her impressive legislative record, fundraising, tactical skill for the party and with critical help from Alice. In 1987 Pelosi initially ran for Congress as a candidate against Harry Britt, and Alice was vital to her victory, narrowly winning the special election to replace former Congressman Philip Burton. In 1987 Pelosi initially ran for Congress as a candidate against Harry Britt. From Day One, Alice was there to help Pelosi become one of the most powerful leaders in America, and one of the LGBT community’s strongest allies. As a liberal from San Francisco, she would never have won the confidence of the national party if she could not back up her progressive values with financial leadership. Alice’s longtime support was an asset to her rise in power. Nancy has proven to be a true friend of the community for her years of leadership in supporting Ryan White Care Act funding for people with AIDS, her support of domestic partnership rights and other LGBT causes. Nancy is an historic American leader and Alice can be proud of playing a role in her success.
Susan Leal runs for Mayor
Longtime Alice friend Susan Leal made history as the first Latina lesbian to run for Mayor in San Francisco in 2003. Alice endorsed her candidacy and worked hard on her behalf. Leal said about the race in Curve Magazine: “what my candidacy does is it sends a message to women, whether they’re queer or women of color, that the last barriers could be broken.
Alice Candidate Kamala Harris becomes District Attorney
In December of 2003, Kamala Harris was elected San Francisco District Attorney with the overwhelming support of Alice early in her campaign. A longtime advocate for LGBT rights, Kamala has proven to be an effective champion for our issues as the City’s DA. One of her most important fights on behalf of the community has been to combat the gay/transgender panic defense used in California to defend acts of violence against our community. Law enforcement issues such as these have been critical to Alice since it’s beginning. The ‘Twinkie Defense’  used to give Dan White a lenient defense in his trial for the murder of Harvey Milk, and the ‘Transgender Panic’ argument used to defend the murderers of transgender high school student Gwen Araujo  are just two examples where legal arguments have been designed to play upon homo/transphobia in the judicial response to violence against the LGBT community. Our community must demand equal treatment by the judicial system and equal protection from law enforcement, and Kamala has been a very effective leader in fighting for these principles with the support of Alice. 
Former Alice Board Member Jose Cisneros becomes City Treasurer
In September 2004 Mayor Gavin Newsom appointed former Alice Board Member Jose Cisneros to become the city Treasurer. Once again, the work of Alice paid off with an effective city treasurer who is one of our closest allies. Cisneros went on to win a full term as treasurer later that year and continues to be a strong voice working with Alice in local government.
Theresa Sparks becomes first Transgender Police Commissioner in San Francisco
In 2004 former Alice Chair Theresa Sparks was sworn in as San Francisco’s first transgender Police Commissioner and would later become elected President of that Commission. After years of advocacy around police issues, Alice saw one of its chairs take a leadership role directly on the police commission and transgender advocates saw transgender leaders serve as officials in the City.
Alice Candidate Phil Ting Becomes San Francisco’s Assessor / Recorder
In 2005 another close friend of Alice made a successful run for office as Phil Ting won election to City Assessor/Recorder. Mayor Newsom appointed Phil because of his strong progressive credentials, long history of professional work at the Assessor/Recorder’s office, and his reputation as a non-political choice for the job. Phil Ting was the most qualified candidate for Assessor / Recorder and the electorate voted him in with Alice’s strong support.
Alice Joins Coalition Effort – “And Castro For All”
In 2005 Alice participated in a broad campaign to address charges of racism at a Castro business as the community had an important dialogue about racial justice. Many African Americans have felt that the Castro is not an inclusive space for communities of color. In this context, the Human Rights Commission issued a report about a Castro establishment finding the business had engaged in racially biased business practices. During this time, Alice Board Member John Newsome had this to say about the issue:
“Sometimes, the Truth matters most when it’s the most unpopular… Truth and, ultimately, Justice are well worth the effort.”
Marriage, The New Beginning
By 2004, Alice and a broad coalition of allies had spent decades creating a very different world for the LGBT community than when Jim Foster started Alice. On Valentine’s Day, 2004, a time known in San Francisco as “The Winter of Love”, the community of San Francisco was ready to turn the page to a new day in our movement.
Marriage – The New Beginning
Of course Valentines Day 2004, the “Winter of Love,” was not the beginning of the fight for marriage equality. But the rush of people to City Hall where Mayor Newsom started marrying gay men and lesbians certainly did feel like a new beginning. For once, the Milk Club, Alice, the Bay Guardian, the Chronicle, Willie Brown, Tom Ammiano and all of San Francisco could stand together and be proud of our city. Not since the days of Milk and Moscone had there been such hope in San Francisco.
On February 14, 2004, Mayor Newsom directed the County Clerk to recognize same sex marriages, citing the US Constitution, and challenging state law as being unconstitutional. People rushed down to City Hall with their friends and families grabbing flowers and their best outfits to experience the words “I do”, with the blessing of the City. The religious right tried to halt the marriages, but the ceremonies continued for several weeks. There were thousands and thousands of same-sex couples who came from all over California, the nation and the world to be a part of it; and they happily waited in lines wrapped around City Hall with City workers volunteering twelve-hour days to marry as many people as possible while the courts allowed the marriages to continue. It felt like a moment when everything changed for our community and we could never go backwards again.
It would be unimaginable that Mayor Newsom would feel empowered to take that stand for marriage equality without the support of groups like Alice. All the years of work building political support behind the idea that gay men, lesbians, bisexual and transgender people are just as deserving of basic dignity as everyone else paid off big when Mayor Newsom made the ‘radical’ act of recognizing our love. Gavin Newsom did not start the fight for marriage, but he boldly ushered in a new day that everyone in San Francisco could be proud of.
Mark Leno carried the torch of marriage equality through the summer in the legislature with Assembly Bill 849, making California the first legislature in the nation to pass a marriage equality bill without the prompting of a court order. Standing up to many who were fearful in his own party that the timing was inappropriate, Leno pressed ahead and through relentless tenacity passed the Marriage Equality bill out of the California Legislature. Leno and Newsom’s efforts helped educate the public and move the issue forward. Polling in California showed that as AB 849 passed the legislature, the California public moved from being decisively opposed to same sex marriage, to being evenly divided over the issue. Despite Governor Schwarzenneger’s veto of AB 849, and despite the rumblings of discontent over Newsom’s act of courage, Leno and Newsom’s efforts, with the work of Alice, Equality California, and countless activists around the state had moved California opinion significantly in our favor. As history continues to move forward, we can be more and more proud of standing up for what is right at a time when others were afraid.
Much can be learned from the work done at Alice. Decades ago after Stonewall signaled a new era for LGBT people, the community was stuck in a conspiracy of silence and a world that despised and misunderstood it. At that time, Alice sought an alliance with the Democratic Party. Over decades of work with allies around the nation, LGBT people were finally able to break the conspiracy of silence. Through years of work, Alice and other political organizations helped coordinate the energy of the LGBT movement into a local, state and national political platform that won systemic changes for the entire nation. Through the support of many leaders such as Mark Leno, Carole Migden, John Laird, Tom Ammiano, Susan Leal, Bevan Dufty, Leslie Katz, Theresa Sparks, Dennis Herrera, Jackie Speier, Willie Brown, Gavin Newsom, Bill Clinton, Barbara Boxer, Nancy Pelosi, Dianne Feinstein, and countless others; Alice helped transform law and sentiment towards LGBT people. San Francisco was at the forefront of change for Consensual Sex Legislation, Domestic Partnership, Equal Benefits, Transgender Health, and Marriage Equality to name just a few of the causes locally championed that went on to have national impact. And thirty years after Harvey Milk told the world “You’ve Gotta Give ‘em Hope,” California declared May 22nd “Harvey Milk Day” in a bill signed by Republican Governor Arnold Schwarzenegger in 2009.
The LGBT community has seized and shaped its destiny over the last few decades. As we in the community look to our future, it’s important to remember how our efforts right now, even the small tasks we do along the way, really do change the world.
Lamberg, Lynne. Soulforce, August 12, 1998. Gay Is Okay With APA (American Psychiatric Association) Story on the history of the American Psychiatric Association 1973 removal of homosexuality from being categorized as a mental disorder.
Wikipedia. Society for Individual Rights (SIR) (the Society for Individual Rights was an organization formed during a period of the gay rights movement called the “Homophile” movement, and SIR would later be renamed and chartered within the Democratic Party as the Alice B Toklas Memorial Democratic Club.
Democratic National Party Platform, 1972 The “Gay Plank” which Jim Foster proposed was removed. The only language the Democratic Party left that remotely relates to homosexuality was under “The Right to be Different” section, and says “Americans should be free to make their own choice of life-styles and private habits without being subject to discrimination or prosecution.”
“Alice B. Toklas LGBT Democratic Club. Alice Reports, Vol. 1. Issue 1. Pg. 3.” Letter from candidate McGovern reprinted from the August 24, 1972 Village Voice.
Harvey Milk Democratic Club. Gay Vote, January, 1978 First issue of Gay Vote, the newsletter of the Gay Democratic Club (later named the Harvey Milk Democratic Club) Cover of newsletter. [See Documents page]
Harvey Milk Democratic Club. Gay Vote, January, 1978 First issue of Gay Vote, the newsletter of the Gay Democratic Club, pg 2 (discusses why the club formed) [See Documents page]
Stonewall Democratic Club, Los Angeles. Newsletter, November 1977, pg. 1 The Stonewall Democratic Club was chartered in Los Angeles by Morris Kight in 1975. This edition of the Stonewall newsletter recounts the formation of the club. Stonewall later became a national alliance of LGBT Democratic Clubs and San Francisco had a Stonewall chapter through much of the 1970’s and 1980’s, but the chapter disbanded. [See Documents page]
Stonewall Democratic Club, Los Angeles. Newsletter, November 1977, pg. 2 Stonewall Democratic Club History continued. [See Documents page]
Alice B. Toklas LGBT Democratic Club. Alice Reports, August, 1982 “National Association of Gay and Lesbian Democratic Clubs” Founded [See Documents page]
Alice B. Toklas LGBT Democratic Club. Alice Reports, December, 1977 San Francisco Mayor George Moscone makes several public commitments to the gay community [See Documents page]
Moral Majority Coalition, The. “Moral Majority Timeline”
Alice B. Toklas LGBT Democratic Club. Alice Reports, May, 1977 Alice helps organize the fight in Dade County Florida [See Documents page]
Alice B. Toklas LGBT Democratic Club. Alice Reports, July, 1975, Pgs 1-2 Backlash against consensual sex law. This backlash would build into an organized effort in following years led by State Senator Briggs to place Measure 6 on the 1978 state ballot to ban gay people from being teachers. [See Documents page]
Alice B. Toklas LGBT Democratic Club. Alice Reports, July, 1975, Pg 4 More on origins of Briggs Initiative [See Documents page]
Alice B. Toklas LGBT Democratic Club. Alice Reports, July, 1975, Pg 7 More on origins of Briggs Initiative [See Documents page]
Alice B. Toklas LGBT Democratic Club. Alice Reports, June, 1979 Recounting the Dan White trial and local upheaval + police incident at “Pegs Place”, a lesbian bar. [See Documents page]
Alice B. Toklas LGBT Democratic Club. Alice Reports, December, 1978 Death of Harvey Milk, recounting his life and impact on politics [See Documents page]
Harvey Milk Democratic Club. Gay Vote, August, 1979 Story of Police incident at Peg’s Place. (pg 1) [See Documents page]
Harvey Milk Democratic Club. Gay Vote, August, 1979 Story of Police incident at Peg’s Place. (pg 2) [See Documents page]
One of many hoaxes involving the claim that a common food product has somehow become contaminated with HIV.
Capriccio Bubbly Sangria beverages are contaminated with HIV.
In May 2018, the Capriccio Bubbly Sangria beverage generated a good deal of publicity online and in news coverage, drawing frequent comparisons to Four Loko as well as speculation about its ingredients and rumored effects on consumers:
One of the most prominent rumors about the beverage involved a supposed screen shot from an alleged news report aired by Chicago television station WFLD (Fox 32 Chicago) stating that Capriccio Sangria was “spreading HIV worldwide”:
We (Snopes) found no evidence that WFLD, or any other legitimate news organization, aired such a report. This image appears to be a digitally doctored one in which a fake chyron was overlaid onto a screenshot of an ordinary Fox News/WFLD report about the drink’s sudden popularity.
The Capriccio Sangria rumor is just the latest entry in a long string of hoaxes positing that various food items have been contaminated with HIV. As we often note, such rumors fail the reality check that HIV would not survive in this type of environment long enough to pose a real danger to unwitting consumers:
Hoax: Beware of HIV-infected oranges
One joke got out of hand while a false declaration was used to promote the anti-immigrant agenda. Here are some recent hoaxes spreading on social media.
Several poor-quality shots of sliced oranges with red spots and a brief description stating they come from Libya were used to spread a popular rumour: the oranges were sprayed with blood infected with the HIV virus.
Croatian customs officers were said to have made this socking discovery, the Sme daily wrote recently. More then 8,000 people on Facebook shared the fake information that has been spreading for at least three years. In August 2017, the antipropaganda.sk website was already writing about the hoax.
More recent alarm
The Czech version of the hoax has been spreading since at least spring 2016. The current version of the hoax is probably identical to the one Antipropaganda noticed: it’s in the Czech language, and both versions contain the same typo – instead of “pomeranče“ (oranges), it reads “pomenanče“. In 2016, more than 16,000 people shared this status.
HIV does not spread through food
The English version has been spread since February 2015, and was analysed by the snopes.com website. The server reminded readers that even if someone really injected the HIV virus into oranges, one cannot get infected in this way.
“Except for rare cases when children ate a meal previously chewed by an HIV-infected person, this virus cannot spread via meals,” Snopes writes. The virus cannot live for long outside of the human body nor survive cooking or exposure to stomach acids.
Joke looses control
Sometimes there is no bad intention or efforts to impact public opinion behind a hoax: from time to time, a mere joke morphs into hoax that isn’t too amusing.
Recently, Czech social media has been flooded by the news that Prague will lose one of its most famous monuments. The popular Charles’ Bridge is allegedly damaged beyond repair, and thus, it has to be demolished. Instead, a modern replica will be built.
This is not the case, however.
A man named Martin Topič created a paste-up that looks like an article from the Czech website iDnes concerning the end of a famous monument. The article states that the walls, thought to be 700 years old, cannot be renovated anymore, and the city has to get rid of the bridge. It claims the European Union ordered the bridge’s demolition as it does not fulfill EU standards anymore, and this news has to be shared.
The author intended this as a joke, targeting fans of such hoaxes and fake news by sending it to several groups in which they meet. In fact, he only misrepresented the original news about the demolition of the Výtoň Bridge, according to the Manipulátoři.cz website.
Facts and fiction
The Výtoň Bridge is the Prague railway bridge that has so many problems it doesn’t make sense to repair it, according to Czech railways. As it is protected by the Monuments Board, however, it could be replaced by an exact replica.
But hoax enthusiasts did not bother to check on anything, resulting not only in rude and enraged comments but also the spread of news that was originally meant as a mere joke.
Is there any lesson to learn? Hardly, if you know how embarrassing it is to explain the meaning of jokes, Sme wrote.
Monaco is not Marrakesh
In May, people started sharing information on the Monaco Declaration, according to which Slovakia has to accept 11,000 Africans, starting on July 1, 2018. After someone noticed that there is no such thing as the Monaco Declaration but rather the Marrakesh Declaration, the hoax was updated and the alarming news continued to spread, the Denník N daily wrote.
The first website to share this hoax was the Czech disinformation website Parlamentní Listy, according to Czech TV. On May 7, it published a story headlined “Africans to Europe, Babiš’ minister signed in Africa. Hungary: this will change the population of Europe, let us not sign it”. The story spread en mass across Facebook, while other Czech and Slovak websites immediately grasped the issue. “An avalanche of migrants from Africa is being prepared, supported by the legislation on the European and national levels,” the Slobodný Výber website wrote one day later.
Slovak politicians use the hoax
For example, the Supreme Court Justice and potential presidential candidate, Štefan Harabin, recorded a video in which he said that 150 to 200 million Africans will arrive in Europe.
“This is a fatal threat to citizens of Slovakia, and an existential threat to our sovereign state,” he noted for the video, which has more than 40,000 clicks. “Do our families want to have children raped, do we want to have window shops broken and zones where even police do not dare to enter?” he asks.
The Facebook site Zdrojj then published a picture where duties allegedly steaming from the Marrakesh Declaration are listed, garnering around 300,000 shares in two days. This is the third most successful disinformation news in the whole week, according to the blbec.online project.
The extreme right ĽSNS party also joined in, according to Denník N. Its MP Natália Grausová described at a parliamentary session in mid-May how Slovakia would be obliged to accept Africans and pay for their accommodation, paired with €800 in pocket money and other benefits.
The state tried to officially disprove these rumours through repeated explanations by the Foreign Ministry. The Facebook site for the police joined in, calling it nonsense and an “absolute hoax”.
The Foreign Ministry’s state secretary Ivan Korčok warned of the hoax through a special status on his Facebook profile.
The Marrakesh Declaration can be read in English on the European Commission websites. It was created as part of the so-called Rabat process, a long-term dialogue of European and African countries on solutions in the sphere of migration.
What is the Marrakesh Declaration?
The latest conference concerning the declaration took place in Marrakesh, Morocco, and one of the participants was Czech Interior Minister Lubomír Metnar; on the Slovak side, nobody participated. Moreover, none of the Slovak ministers even formally signed it. Slovak diplomacy joined the declaration with the Slovak ambassador to Brussels expressing his support remotely.
The working agreement does not mention anything about Slovakia being forced to accept Africans.
The Marrakesh Declaration is not an international contract obliging Slovakia to anything. It is a mere political declaration which is legally non-binding, according to Denník N.
HOAX ALERT: HIV injected into ‘bloody’ bananas, again
“That is Satanism,” a religious group says on its Facebook page, claiming that fruit is being injected with HIV-infected blood by groups of people “with the aim of killing millions of people around the world”.
The post by the Spiritual Warfare and Tactics Squad warns people not to eat any fruit with a “red weird colour.” It’s illustrated by two pictures: one shows a banana being injected with a fluid that looks like blood. The other shows a peeled banana with a red colour inside.
Hoax debunked three years ago
The post was flagged by Facebook users in Nigeria. Africa Check has found a number of versions of the claim. It has been so popular it was debunked by Snopes in November 2015 and Hoax-Slayer in February 2016.
“This form of reddish discolouration in bananas has nothing to do with blood of any sort,” Snopes explained. “It’s a hallmark of fungal or bacterial diseases that affect bananas grown in some areas and can cause their centres to turn dark red.”
The US Centers for Disease Control states that HIV does not live for long outside the body. And the virus can’t be caught from food, even if the food contains small amounts of HIV-infected blood. – Allwell Okpi (24/10/2018)
Rumor: Someone Put HIV+ Blood in Pepsi Cola
A viral rumor has been circulating since at least 2004 claiming that a worker put HIV-infected blood into a cola company’s products. The rumor is false—a complete hoax—but read on to find out the details behind the urban legend, how it got started, and the facts of the matter according to health officials
The following posting, which was shared on Facebook on Sept. 16, 2013, is fairly representative of the rumor alleging HIV-infected cola:
There’s news from the police. Its an urgent message for all. For next few days don’t drink any product from pepsi company’s like pepsi, tropicana juice, slice, 7up etc. A worker from the company has added his blood contaminated with AIDS.. Watch MDTV. please forward this to everyone on your list.
Versions of the same rumor have made the rounds previously, in 2004, and again in 2007-2008. In those previous instances, the food products allegedly contaminated with HIV-positive blood were ketchup and tomato sauce, but the status of the claim was the same: false.
No legitimate sources, media or governmental, have reported any such occurrence. Moreover, even if such an incident had occurred, it would not have resulted in the spread of AIDS, according to medical experts.
CDC Debunks Myth
This is how the Centers for Disease Control and Prevention explains it:
You can’t get HIV from consuming food handled by an HIV-infected person. Even if the food contained small amounts of HIV-infected blood or semen, exposure to the air, heat from cooking, and stomach acid would destroy the virus.
A CDC fact sheet also reported that the agency has never documented any incidents of food or beverage products being contaminated with HIV-infected blood or semen, or incidents of HIV infection transmitted via food or beverage products.
The Myth Resurfaces
As recently as 2017, the urban legend resurfaced—this time in a viral rumor posted on. Aug 21 of that year. The post, which appeared on the website of Washington, D.C., television station WUSA 9, reads in part:
WUSA9 News was contacted by several viewers who saw thistext message being shared on social mediaas a warning. The message reads: Important message from Metropolitan Police to all citizen of United Kingdom. “For the next few weeks do not drink any products from Pepsi, as a worker from the company has added blood contaminated with HIV (AIDS). It was shown yesterday on Sky News. Please forward this message to the people who you care.” WUSA9 News researchers contacted United Kingdom Department of Health Media & Campaigns Executive, Lauren Martens who confirmed the message is a hoax and also not shown on Sky News. Martens also said Metropolitan Police did not have any issued statement about this message.
The television station also contacted the CDC, which—as noted above—said that you can’t get HIV “from consuming food handled by an HIV-infected person.” WUSA also contacted PepsiCo spokesperson Aurora Gonzalez from who called story an “old hoax.”
HOAX: This photo with a warning about tainted chocolates is false
A photo warning consumers about consuming Cadbury chocolates actually shows a terror suspect being extradited
A Facebook post warning social media users not to consume Cadbury chocolates ‘for the next few weeks’ because a HIV-positive worker allegedly added his contaminated blood to them is a HOAX.
The post cautions against consuming Cadbury products due to the risk of getting infected with HIV/AIDS..
Reverse image searches on Google and TinEye reveal that the man in the photo being escorted by two police officers was not arrested for contaminating Cadbury products as the post claims, but is actually Aminu Sadiq Ogwuche, the alleged mastermind behind the April 2014 bombing of a bus station in Abuja, the Nigerian capital, in 2014.
The photo in the post was taken on his arrival in Nigeria following his extradition from Sudan.
The claim of potential HIV infection from blood in chocolate contained in the post is also factually incorrect, because the HIV virus does not survive long outside the human body and cannot reproduce outside a human host. Contracting the virus from consuming food items, even if they are contaminated with HIV, is extremely unlikely as explained by the CDC.
Cadbury took to Twitter in March 2018 to caution its clients about the false information being spread about its products being contaminated with the HIV virus.
PesaCheck has looked into the claim that tainted Cadbury products could transmit HIV to unsuspecting consumers and finds it to be a HOAX.
Urban Legend: Needles Hidden Under Gas Pump Handles
A viral alert warns that evildoers are exposing innocent victims to theAIDS virusby attaching HIV-contaminated needles to gas pump handles. This is a long-discredited hoax that has been circulating since 2000 but continues to crop up years and even decades later
The samples of the hoax postings are included for your comparison. If you receive a similar warning via email or social media, you can safely ignore it. It’s best not to continue circulating this hoax.
Please read and forward to anyone you know who drives.
My name is Captain Abraham Sands of the Jacksonville, Florida Police Department. I have been asked by state and local authorities to write this email in order to get the word out to car drivers of a very dangerous prank that is occurring in numerous states.
Some person or persons have been affixing hypodermic needles to the underside of gas pump handles. These needles appear to be infected with HIV positive blood. In the Jacksonville area alone there have been 17 cases of people being stuck by these needles over the past five months.
We have verified reports of at least 12 others in various states around the country. It is believed that these may be copycat incidents due to someone reading about the crimes or seeing them reported on the television. At this point no one has been arrested and catching the perpetrator(s) has become our top priority.
Shockingly, of the 17 people who where stuck, eight have tested HIV positive and because of the nature of the disease, the others could test positive in a couple years.
Evidently the consumers go to fill their car with gas, and when picking up the pump handle get stuck with the infected needle. IT IS IMPERATIVE TO CAREFULLY CHECK THE HANDLE of the gas pump each time you use one. LOOK AT EVERY SURFACE YOUR HAND MAY TOUCH, INCLUDING UNDER THE HANDLE.
If you do find a needle affixed to one, immediately contact your local police department so they can collect the evidence.
********* PLEASE HELP US BY MAINTAINING A VIGILANCE AND BY FORWARDING THIS EMAIL TO ANYONE YOU KNOW WHO DRIVES. THE MORE PEOPLE WHO KNOW OF THIS THE BETTER PROTECTED WE CAN ALL BE. **********
Social Media Posting
As posted on Facebook, Jan. 26, 2013:
HIV/AIDS Needles hidden under gas pumps
In Florida and other places on the East Coast a group of people are puttingHIV/AIDS infectedand filled needles underneath gas pump handles so when someone reaches to pick it up and put gas in their car, they get stabbed with it. 16 people have been a victim of this crime so far and 10 tested HIC positive. Instead of posting that stupid crap about how your love life will suck for years to come of you don’t re-post, post this. It’s important to inform people, even if you don’t drive, a family member might, and what if they were next? CHECK UNDER THE HANDLE BEFORE YOU GRAB IT!!! IT MIGHT SAVE YOUR LIFE!
Analysis of Viral Warnings
On June 20, 2000, mere days after the overwrought warning above first slammed inboxes across the Internet, the Jacksonville Sheriff’s Department issued a press release declaring it a hoax.
“The Jacksonville Sheriff’s Office has had no reports of such incidents and there is no ‘Capt. Abraham Sands’ at the JSO,” the statement said. Nor had any such incidents been reported elsewhere in the United States. Moreover, according to the CDC, there are no documented cases of HIV being transmitted via needle-sticks in non-health care settings, ever.
The viral warning was, and is, entirely fictitious. It did add an interesting new wrinkle to the HIV needle-stick rumors already circulating online in various forms since 1997. Previous variants warned of tainted syringes planted in movie theater seats and pay phone coin slots, not to mention random “stealth prickings” (for lack of a better phrase) in nightclubs and other crowded public places.
All these variants have been investigated and deemed false by authorities with the sole exception of a spate of apparent copycat pranks that occurred around the beginning of 1999 in western Virginia. According to police there, actualhypodermic needleswere found in the coin slots of public phones and bank night deposit slots in a couple of small towns in the area. None were found to be contaminated with HIV or any other biological agent. Presumably, the pranksters were imitating rumors that had already been circulating online for months.
Groundless though it may be, the conviction that unknown assailants are intentionally spreading AIDS by hiding contaminated needles in public places remains popular, especially on the email forwarding circuit. One reason is that these tales and otherurban legendslike them provide an outlet for unspoken fears—of strangers, of the motives of some of the more marginal members of society, of AIDS itself. They’recautionary tales, albeit ones that don’t really function as such—not literally, at any rate—in that they fail to address the primary way HIV isactuallytransmitted: unsafe sex.
By virtue of the fact that each of these fictitious scenarios depicts the transmission of HIV via acts of penetration, each works as ametaphorfor sex. Consider the claim that one risks exposure to HIV simply by inserting one’s finger into the coin slot of a public phone. The imagery isn’t pretty, but it’s apt. Now we’re being warned to be careful whenpumping gas, to take all due precautions before sliding the nozzle into the tank. Sound advice? Metaphorically speaking, yes!
This statement appeared on the CDC.gov site in 2010.
Have people been infected with HIV from being stuck by needles in non-health care settings?
No. While it is possible to get infected with HIV if you are stuck with a needle that is contaminated with HIV, there are no documented cases of transmission outside of a health-care setting.
CDC has received inquiries about used needles left by HIV-infected injection drug users in coin return slots of pay phones, the underside of gas pump handles, and on movie theater seats. Some reports have falsely indicated that CDC “confirmed” the presence of HIV in the needles. CDC has not tested such needles nor has CDC confirmed the presence or absence of HIV in any sample related to these rumors. The majority of these reports and warnings appear to be rumors/myths.
Get a reality check on some of the most bizarre rumours about how HIV is transmitted.
There’s only a few ways that you can get HIV but, at Avert, it seems that we’ve heard it all when it comes to the many myths and misconceptions about HIV.
A lot of these stories circulating on the HIV rumour mill are old, outdated and more importantly, misinformed. In fact, many of these myths just keep reinforcing HIV-related stigma and have had a long-lasting and damaging impact on many people’s perceptions about how the virus is spread.
Here we debunk some common urban legends to give you the truth about HIV transmission…
Myth 1: Girl goes to cinema and comes out with HIV
Rumour:During the 1990s, a common myth suggested that discarded needles left by strangers anywhere from gas pump handles to inside your cinema chair were infecting unassuming people with HIV. One such story involved a girl getting an unexpected needle stick injury while reaching down beneath her cinema seat to pick up some popcorn.
Reality:Although HIV transmission is a risk between people whoshare needles for drug use, there has actually never been a recorded case of HIV transmission from a discarded needle. However, if you are concerned that you have received a needle stick injury, you should seek medical advice to get checked up forhepatitis C andB instead.
Myth 2: There’s something wrong with this banana…
Rumour:Pictures of red-pigmented fruit (such as bananas or oranges) still circulate the web even today. They are usually accompanied by warnings not to eat them because they have supposedly been injected with HIV. Similar food-related HIV transmission rumours include tainted ketchup, pizza with toppings of bodily fluids and pineapple vendors accused of deliberately selling contaminated fruit.
Reality: You cannot get HIV from food of any kind, including fruit. Even if HIV contaminated blood did get onto the food you’re eating, the virus doesn’t live long enough outside of a human body for it to be transmittable.
Myth 3: I got a pedicure and HIV from some fish in a shopping centre
Rumour:Getting pedicures from Garra rufa fish – which nibble off dry skin – was once a popular beauty fad. However, many salons offering this service closed as a result of news outlets spreading the rumours that fish in these tanks were spreading blood-borne viruses such as HIV and hepatitis C between consumers.
Reality:HIV stands for Human Immunodeficiency Virus which means transmission of HIV only happens between humans – you can’t get HIV from animals, insects or fish. There are no cases of HIV infection due to the use of fish baths, or as a result of any other water-borne route including the use of swimming pools or spas.
Myth 4: The fizzy drink HIV hoax
Rumour:‘For the next few weeks do not drink any products from Pepsi, as a worker from the company has added his blood contaminated with HIV (AIDS)…’
This SMS message, which was falsely linked to the United Kingdom’s Metropolitan Police service in 2017, suggested that a line worker at Pepsi was secretly contaminating cans of fizzy drink with the virus.
Reality:This message has been circulating the web in different formats since 2004 and is incredibly damaging. Even if there was blood found within the drinks cans, HIV can’t live outside of the body long enough for it to be transmittable.
Myth 5: Teen diagnosed with HIV after getting a hair weave at salon
Rumour:In 2015, a rumour in the US reported that a girl in Georgia had contracted HIV at a hair salon because the needles used to fix the girl’s weave to her scalp were dirty. The girl was supposedly diagnosed a week after her makeover, despite never having had sex or used intravenous drugs.
Reality:This story was later reported to be a work of fiction by its author, but it is worth noting that transmission of HIV from stick injuries even in medical settings is extremely rare. The claim that someone can be diagnosed with HIV a week after exposure is also incorrect – as it can take from two weeks to 3 months for an infection to be detected by modern HIV tests.
Today, if someone is diagnosed with HIV, he or she can choose among 41 drugs that can treat the disease. And there’s a good chance that with the right combination, given at the right time, the drugs can keep HIV levels so low that the person never gets sick.
That wasn’t always the case. It took seven years after HIV was first discovered before the first drug to fight it was approved by the U.S. Food and Drug Administration (FDA). In those first anxious years of the epidemic, millions were infected. Only a few thousand had died at that point, but public health officials were racing to keep that death rate from spiking — the inevitable result if people who tested positive weren’t treated with something.
As it turned out, their first weapon against HIV wasn’t a new compound scientists had to develop from scratch — it was one that was already on the shelf, albeit abandoned. AZT, or azidothymidine, was originally developed in the 1960s by a U.S. researcher as way to thwart cancer; the compound was supposed to insert itself into the DNA of a cancer cell and mess with its ability to replicate and produce more tumor cells. But it didn’t work when it was tested in mice and was put aside.
Two decades later, after AIDS emerged as new infectious disease, the pharmaceutical company Burroughs Wellcome, already known for its antiviral drugs, began a massive test of potential anti-HIV agents, hoping to find anything that might work against this new viral foe. Among the things tested was something called Compound S, a re-made version of the original AZT. When it was throw into a dish with animal cells infected with HIV, it seemed to block the virus’ activity.
The company sent samples to the FDA and the National Cancer Institute, where Dr. Samuel Broder, who headed the agency, realized the significance of the discovery. But simply having a compound that could work against HIV wasn’t enough. In order to make it available to the estimated millions who were infected, researchers had to be sure that it was safe and that it would indeed stop HIV in some way, even if it didn’t cure people of their infection. At the time, such tests, overseen by the FDA, took eight to 10 years.
Patients couldn’t wait that long. Under enormous public pressure, the FDA’s review of AZT was fast tracked — some say at the expense of patients.
Scientists quickly injected AZT into patients. The first goal was to see whether it was safe — and, though it did cause side effects (including severe intestinal problems, damage to the immune system, nausea, vomiting and headaches) it was deemed relatively safe. But they also had to test the compound’s effectiveness. In order to do so, a controversial trial was launched with nearly 300 people who had been diagnosed with AIDS. The plan was to randomly assign the participants to take capsules of the agent or a sugar pill for six months. Neither the doctor nor the patient would know whether they were on the drug or not.
After 16 weeks, Burroughs Wellcome announced that they were stopping the trial because there was strong evidence that the compound appeared to be working. One group had only one death. Even in that short period, the other group had 19. The company reasoned that it wouldn’t be ethical to continue the trial and deprive one group of a potentially life-saving treatment.
Those results — and AZT — were heralded as a “breakthrough” and “the light at the end of the tunnel” by the company, and pushed the FDA approve the first AIDS medication on March 19, 1987, in a record 20 months.
But the study remains controversial. Reports surfaced soon after that the results may have been skewed since doctors weren’t provided with a standard way of treating the other problems associated with AIDS — pneumonia, diarrhea and other symptoms — which makes determining whether the AZT alone was responsible for the dramatic results nearly impossible. For example, some patients received blood transfusions to help their immune systems; introducing new, healthy blood and immune cells could have helped these patients battle the virus better. There were also stories of patients from the 12 centers where the study was conducted pooling their pills, to better the chances that they would get at least some of the drug rather than just placebos.
And there were still plenty of questions left unanswered about the drug when it was approved. How long did the apparent benefits last? Could people who weren’t sick yet still benefit? Did they benefit more than those further along in their disease?
Such uncertainty would not be acceptable with a traditional approval, but the urgent need to have something in hand to fight the growing epidemic forced FDA’s hand. The people in the trial were already pressuring the company and the FDA to simply release the drug — if there were something that worked against HIV, they said, then it was not ethical to withhold it.
The drug’s approval remains controversial to this day, but in a world where treatment options are so far advanced it can be hard to imagine the sense of urgency and the social pressure permeating the medical community at the time. AIDS was an impending wave that was about to crash on the shores of an unsuspecting — and woefully unprepared — populace. Having at least one drug that worked, in however limited a way, was seen as progress.
But even after AZT’s approval, activists and public health officials raised concerns about the price of the drug. At about $8,000 a year (more than $17,000 in today’s dollars) — it was prohibitive to many uninsured patients and AIDS advocates accused Burroughs Wellcome of exploiting an already vulnerable patient population.
In the years since, it’s become clear that no single drug is the answer to fighting HIV. People taking AZT soon began showing rising virus levels — but the virus was no longer the same, having mutated to resist the drug. More drugs were needed, and AIDS advocates criticized the FDA for not moving quickly enough to approve additional medications. And side effects including heart problems, weight issues and more reminded people that anything designed to battle a virus like HIV was toxic.
Today, there are several classes of HIV drugs, each designed to block the virus at specific points in its life cycle. Used in combination, they have the best chance of keeping HIV at bay, lowering the virus’s ability to reproduce and infect, and ultimately, to cause death. These so-called antiretroviral drugs have made it possible for people diagnosed with HIV to live long and relatively healthy lives, as long they continue to take the medications.
And for most of these people, their therapy often still includes AZT.
AIDS HOPES DASHED BY TERRIBLE TRUTH ON AZT
It was the drug that held out hope to people carrying the world’s most feared virus. It had the power to move share prices by millions. What it could not do was help people facing AIDS.
This weekend the truth about AZT is in the open: a comprehensive trial, so big it equals all the other research put together, shows that the drug which dominates AIDS treatment has no effect in delaying the onset of the disease. After all the promise and the profits, AZT has nothing to offer people with HIV.
The findings came in the final report on the Anglo-French Concorde trial, published yesterday in The Lancet. Some 1,749 patients with HIV, but who showed no symptoms, were given either the drug or a placebo. There was no statistical difference in the progress of the two groups: after three years 18% had AIDS or were dead.
The results leave a terrible void for the 12m people worldwide said to be infected with the virus, and crush any remaining hopes that AZT might delay the onset of symptoms. They also raise questions as to how those hopes were fuelled in the first place.
Doubts about AZT were first revealed by The Sunday Times five years ago. A painstaking investigation showed that AZT had been rushed to market on the back of a flawed study that was supposed to demonstrate its effectiveness.
The American Food and Drug Administration (FDA), responsible for protecting the public from risk, had been aware of flaws in the trial, but gave AZT approval. Documents obtained under the American Freedom of Information Act showed that records compiled during the trial had been altered, giving the drug a more favourable record; “multiple deviations” from the terms of the study had occurred; and FDA investigators had argued for data from one centre to be dropped entirely from the results. A senior FDA official believed AZT should not be granted a licence, but was overruled.
The doubts did nothing to inhibit Wellcome, AZT’s maker, from promoting its drug. Patients with HIV, but without AIDS symptoms, were the new target. They are worth more money because there are more of them and because they have longer to live.
To show the drug’s usefulness to this lucrative group, Wellcome trumpeted a big American trial called Protocol 019. The trial was halted in August 1989, after less than two years, on the grounds that it had already shown such benefit to HIV-positive people it would be unethical not to give the drug to all who wanted it.
Such “benefit” was judged only by time free from disease. A new analysis of the trial data, however, reaches a similar conclusion to Concorde: that AZT is essentially useless.
The original results were announced with a fanfare by the National Institute of Allergy and Infectious Diseases, which sponsored it with Wellcome’s support. In London, The Independent newspaper gave its front page to the findings, under the headline “AIDS drug offers lease of life”.
The very different picture painted by last month’s analysis, in the New England Journal of Medicine, comes after investigators paid more attention to the drug’s side-effects. These can include anaemia, liver damage, fatigue, nausea, headaches and sometimes a collapse in white blood cells, making patients more prone to disease.
The researchers looked at the average time patients experienced neither a progression of disease nor an adverse effect. Those treated with low doses of AZT were found to suffer a reduction in quality of life “due to severe side-effects of therapy” that approximately equalled any benefit from slowing down the disease; people on higher doses suffered even greater side-effects, outweighing the supposed benefit.
Dr Peter Duesberg, the American virus expert who has claimed for years that AZT is not a rational therapy, says it is clear that the original claims were completely ill-founded. “The opposite interpretations of the same data lead me to conclude that those responsible are not acting as scientists; they are acting as politicians.
“When the time is ripe to say that AZT is detrimental, that it actually hurts, the interpretation will change again.”
For patients with AIDS-related symptoms, AZT will continue to be prescribed: the consensus remains that it gives a temporary benefit.
For those without symptoms, hope centres on combinations of drugs, or on other approaches such as gene therapy. However, Professor Ian Weller, of the Middlesex hospital in London, who was the principal British investigator in the Concorde trial, is alarmed by the drive to give AIDS patients an AZT drug cocktail as if it were already an established therapy.
“There’s a suspicion of more toxicity if you combine it with other treatment, and we are a long way from showing an important clinical benefit, or that it is safer than AZT on its own,” he said. “There are physicians who are jumping the gun.”
As late as Thursday, Wellcome was insisting that AZT “remains the best weapon we have to slow the progress of the disease”. Dr Trevor Jones, its research director, said: “The question is where in the course of the disease you begin.” *
AIDS and the AZT Scandal: SPIN’s 1989 Feature, ‘Sins of Omission’
The story of AZT, one of the most toxic, expensive, and controversial drugs in the history of medicine
At the end of 1989, two years after we had started the highly controversial AIDS column in SPIN, we published an article by Celia Farber called “Sins of Omission” about the truly bad and corrupt science surrounding promoting AZT as a treatment for the syndrome of diseases.
Celia was the editor and frequent writer of the column and unearthed hard evidence of the cold-bloodedness of the AIDS establishment pushing a drug that was worse than the disease, and killed faster than the natural progression of AIDS left untreated. AZT had been an abandoned cancer drug, discarded because of it’s fatal toxicity, resurrected in the cynical belief that AIDS patients were going to die anyway, so trying it out was sort of like playing with the house’s money. Because the drug didn’t require the usual massively expensive research and trial processes, having gone through that years earlier, it was insanely profitable for its maker, Burroughs Wellcome. It was a tragically perfect storm of windfall profits, something to pacify AIDS activists and the media, and a convenient boom to the patent holders for HIV testing.
Celia — who should get the Congressional Medal of Honor for her brave and relentless reporting, here and throughout the ten years we ran the column — exposed the worthlessness of the drug, the shady studies and deals to suppress the negative findings, and its awful and final consequences. This piece very literally changed the media’s view of AIDS and sharpened their discerning and skeptical eye. And soon after, AZT was once again shelved, hopefully this time forever.
Many times over the years since, people have come up to me and said that reading this article saved their lives, that they either stopped taking the drug and their health improved vastly, or they never took it because of what we reported. Nothing ever made me prouder.
— Bob Guccione Jr., founder of SPIN, October 3, 2015
[This story was originally published in the November 1989 issue of SPIN. In honor of SPIN’s 30th anniversary, we’ve republished this piece as part of our ongoing “30 Years, 30 Stories” series.]
On a cold January day in 1987, inside one of the brightly-lit meeting rooms of the monstrous FDA building, a panel of 11 top AIDS doctors pondered a very difficult decision. They had been asked by the FDA to consider giving lightning-quick approval to a highly toxic drug about which there was very little information. Clinically called Zidovudine, but nicknamed AZT after its components, the drug was said to have shown a dramatic effect on the survival of AIDS patients. The study that had brought the panel together had set the medical community abuzz. It was the first flicker of hope — people were dying much faster on the placebo than on the drug.
But there were tremendous concerns about the new drug. It had actually been developed a quarter of a century earlier as a cancer chemotherapy, but was shelved and forgotten because it was so toxic, very expensive to produce, and totally ineffective against cancer. Powerful, but unspecific, the drug was not selective in its cell destruction.
Drug companies around the world were sifting through hundreds of compounds in the race to find a cure, or at least a treatment, for AIDS. Burroughs Wellcome, a subsidiary of Wellcome, a British drug company, emerged as the winner. By chance, they sent the failed cancer drug, then known as Compound S, to the National Cancer Institute along with many others to see if it could slay the AIDS dragon, HIV. In the test tube at least, it did. At the meeting, there was a lot of uncertainty and discomfort with AZT. The doctors who had been consulted knew that the study was flawed and that the long-range effects were completely unknown. But the public was almost literally baying at the door. Understandably, there was immense pressure on the FDA to approve AZT, considering the climate of fear and anger all around.*
Everybody was worried about this one. To approve it, said Ellen Cooper, an FDA director, would represent a “significant and potentially dangerous departure from our normal toxicology requirements.” Just before approving the drug, one doctor on the panel, Calvin Kunin, summed up their dilemma. “On the one hand,” he said, “to deny a drug which decreases mortality in a population such as this would be inappropriate. On the other hand, to use this drug widely, for areas where efficacy has not been demonstrated, with a potentially toxic agent, might be disastrous.”
“We do not know what will happen a year from now,” said panel chairman Dr. Itzhak Brook. “The data is just too premature, and the statistics are not really well done. The drug could actually be detrimental.” A little later, he said he was also “struck by the fact that AZT does not stop deaths. Even those who were switched to AZT still kept dying.”
“I agree with you,” answered another panel member, “there are so many unknowns. Once a drug is approved, there is no telling how it could be abused. There’s no going back.” Burroughs Wellcome reassured the panel that they would provide detailed two-year follow-up data, and that they would not let the drug get out of its intended parameters: as a stopgap measure for very sick patients.
Dr. Brook was not won over by the promise. “If we approve it today, there will not be much data. There will be a promise of data,” he predicted, “but then the production of data will be hampered.” Brook’s vote was the only one cast against approval.
“There was not enough data, not enough follow-up,” Brook recalls. “Many of the questions we asked the company were answered by, ‘We have not analyzed the data yet,’ or, ‘We do not know.’ I felt that there was some promising data, but was very worried about the price being paid for it. The side effects were so very severe. It was chemotherapy. Patients were going to need blood transfusions, that’s very serious.”
“The committee was tending to agree with me,” says Brook, “that we should wait a little bit, be more cautious. But once the FDA realized we were intending to reject it, they applied political pressure. At about 4 p.m., the head of the FDA’s Center for Drugs and Biologics asked permission to speak, which is extremely unusual. Usually they leave us alone. But he said to us, ‘Look, if you approve the drug, we can assure you that we will work together with Burroughs Wellcome and make sure the drug is given to the right people.’ It was like saying ‘please do it.’”
Brad Stone, FDA press officer, was at that meeting. He says he doesn’t recall that particular speech, but that there is nothing “unusual” about FDA officials making such speeches at advisory meetings. “There was no political pressure,” he says. “The people in that meeting approved the drug because the data the company had produced proved it was prolonging life. Sure it was toxic, but they concluded that the benefits clearly outweighed the risks.” The meeting ended. AZT, which several members of the panel still felt uncomfortable with and feared could be a time bomb, was approved.
Flash forward: August 17, 1989. Newspapers across America banner-headlined that AZT had been “proven to be effective in HIV antibody-positive, asymptomatic, and early ARC patients,” even though one of the panel’s main concerns was that the drug should only be used in a last-case scenario for critically-ill AIDS patients, due to the drug’s extreme toxicity. Dr. Anthony Fauci, head of the National Institutes of Health (NIH), was now pushing to expand prescription.
The FDA’s traditional concern had been thrown to the wind. Already the drug had spread to 60 countries and an estimated 20,000 people. Not only had no new evidence allayed the initial concerns of the panel, but the follow-up data, as Dr. Brook predicted, had fallen by the wayside. The beneficial effects of the drug had proven to be temporary. The toxicity, however, stayed the same.
The majority of those in the AIDS-afflicted and medical communities held the drug up as the first breakthrough on AIDS. For better or worse, AZT had been approved faster than any drug in FDA history, and activists considered it a victory. The price paid for the victory, however, was that almost all government drug trials, from then on, focused on AZT — while over 100 other promising drugs were left uninvestigated.
Burroughs Wellcome stock went through the roof when the announcement was made. At a price of $8.000 per patient per year (not including blood-work and transfusions), AZT is the most expensive drug ever marketed. Burroughs Wellcome’s gross profits for next year are estimated at $230 million. Stock market analysts predict that Burroughs Wellcome may be selling as much as $2 billion worth of AZT, under the brand name Retrovir, each year by the mid-1990s — matching Burroughs Wellcome’s total sales for all its products last year.
“Does AZT do anything? Yes, it does. But the evidence that it does something against HIV is really not there.”
AZT is the only antiretroviral drug that has received FDA approval for treatment of AIDS since the epidemic began ten years ago, and the decision to approve it was based on a single study that has long been declared invalid. The study was intended to be a “double-blind placebo-controlled study,” the only kind of study that can effectively prove whether or not a drug works. In such a study, neither patient nor doctor is supposed to know if the patient is getting the drug or a placebo. In the case of AZT, the study became unblinded on all sides, after just a few weeks.
Both sides contributed to the unblinding. It became obvious to doctors who was getting what because AZT causes such severe side effects that AIDS per se does not. Furthermore, a routine blood count known as a CMV, which clearly shows who is on the drug and who is not, wasn’t whited out in the reports. Both of these facts were accepted and confirmed by both the FDA and Burroughs Wellcome, who conducted the study.
Many of the patients who were in the trial admitted that they had analyzed their capsules to find out whether they were getting the drug. If they weren’t, some bought the drug on the underground market. Also, the pills were supposed to be indistinguishable by taste, but they were not. Although this was corrected early on, the damage was already done. There were also reports that patients were pooling pills out of solidarity to each other. The study was so severely flawed that its conclusions must be considered, by the most basic scientific standards, unproven.
The most serious problem with the original study, however, is that it was never completed. Seventeen weeks into the study, when more patients had died in the placebo group, the study was stopped, five months prematurely, for “ethical” reasons: It was considered unethical to keep giving people a placebo when the drug might keep them alive longer. Because the study was stopped short, and all subjects were put on AZT, no scientific study can ever be conducted to prove unequivocally whether AZT does prolong life.
Dr. Brook, who voted against approval, warned at the time that AZT, being the only drug available for doctors to prescribe to AIDS patients, would probably have a runaway effect. Approving it prematurely, he said, would be like “letting the genie out of the bottle.”
Brook pointed out that since the drug is a form of chemotherapy, it should only be prescribed by doctors who have experience with chemotherapeutic drugs. Because of the most severe toxic effect of AZT — cell depletion of the bone marrow —patients would need frequent blood transfusions. As it happened, AZT was rampantly prescribed as soon as it was released, way beyond its purported parameters. The worst-case scenario had come true: Doctors interviewed by the New York Times later in 1987 revealed that they were already giving AZT to healthy people who had tested positive for antibodies to HIV.
The FDA’s function is to weigh a drug’s efficacy against its potential hazards. The equation is simple and obvious: A drug must unquestionably repair more than it damages, otherwise the drug itself may cause more harm than the disease it is supposed to fight. Exactly what many doctors and scientists fear is happening with AZT.
“I personally do not prescribe AZT. I have continued to experience that people live longer who are not on it.”
AZT was singled out among hundreds of compounds when Dr. Sam Broder, the head of the National Cancer Institute (NCI), found that it “inhibited HIV viral replication in vitro.” AIDS is considered a condition of immune suppression caused by the HIV virus replicating and eating its way into T-4 cells, which are essential to the immune system. HIV is a retrovirus which contains an enzyme called reverse transcriptase that converts viral RNA to DNA. AZT was thought to work by interrupting this DNA synthesis, thus stopping further replication of the virus.
While it was always known that the drug was exceedingly toxic, the first study concluded that “the risk/benefit ratio was in favor of the patient.”
In the study that won FDA approval for AZT, the one fact that swayed the panel of judges was that the AZT group outlived the placebo group by what appeared to be a landslide. The ace card of the study, the one that canceled out the issue of the drug’s enormous toxicity, was that 19 persons had died in the placebo group and only one in the AZT group. The AZT recipients were also showing a lower incidence of opportunistic infections.
While this data staggered the panel that approved the drug, other scientists insisted that it meant nothing — because it was so shabbily gathered, and because of the unblinding. Shortly after the study was stopped, the death rate accelerated in the AZT group. “There was no great difference after a while,” says Dr. Brook, “between the treated and the untreated group.”
“That study was so sloppily done that it really didn’t mean much,” says Dr. Joseph Sonnabend, a leading New York City AIDS doctor. Dr. Harvey Bialy, scientific editor of the journal Biotechnology, is stunned by the low quality of science surrounding AIDS research. When asked if he had seen any evidence of the claims made for AZT, that it “prolongs life” in AIDS patients, Bialy said, “No, I have not seen a published study that is rigorously done, analyzed, and objectively reported.”
Bialy, who is also a molecular biologist, is horrified by the widespread use of AZT, not just because it is toxic, but because, he insists, the claims its widespread use are based upon are false. “I can’t see how this drug could be doing anything other than making people very sick,” he says.
The scientific facts about AZT and AIDS are indeed astonishing. Most ironically, the drug has been found to accelerate the very process it was said to prevent: the loss of T-4 cells.
“Undeniably, AZT kills T-4 cells [white blood cells vital to the immune system],” says Bialy. “No one can argue with that. AZT is a chain-terminating nucleotide, which means that it stops DNA replication. It seeks out any cell that is engaged in DNA replication and kills it. The place where most of this replication is taking place is in the bone marrow. That’s why the most common and severe side effect of the drug is bone marrow toxicity. That is why they [patients] need blood transfusions.”
AZT has been aggressively and repeatedly marketed as a drug that prolongs survival in AIDS patients because it stops the HIV virus from replicating and spreading to healthy cells. But, says Bialy: “There is no good evidence that HIV actively replicates in a person with AIDS, and if there isn’t much HIV replication to stop, it’s mostly killing healthy cells.”
University of California at Berkeley scientist Dr. Peter Duesberg drew the same conclusion in a paper published in Proceedings, the journal of the National Academy of Sciences. Duesberg, whose paper addressed his contention that HIV is not a sufficient cause for AIDS, wrote: “Even if HIV were to cause AIDS, it would hardly be a legitimate target for AZT therapy, because in 70 to 100 percent of antibody-positive persons, proviral DNA is not detectable… and its biosynthesis has never been observed.”
As a chemotherapeutic drug, explained Duesberg, AZT “kills dividing blood cells and other cells,” and is thus “directly immunosuppressive.”
“The cell is almost a million-fold bigger target than the virus, so the cell will be much, much more sensitive,” says Duesberg. “Only very few cells, about one in 10,000, are actively making the virus containing DNA, so you must kill incredibly large numbers of cells to inhibit the virus. This kind of treatment could only theoretically help if you have a massive infection, which is not the case with AIDS. Meanwhile, they’re giving this drug that ends up killing millions of lymphocytes [white blood cells]. It’s beyond me how that could possibly be beneficial.”
“It doesn’t really kill them,” Burroughs Wellcome scientist Sandra Lehrman argues. “You don’t necessarily have to destroy the cell, you can just change the function of it. Furthermore, while the early data said that only very few cells were infected, new data says that there may be more cells infected. We have more sensitive detection techniques now.”
“Changes their function? From what — functioning to not functioning? Another example of mediocre science,” says Bialy. “The ‘sensitive detection technique’ to which Dr. Lehrman refers, PCR, is a notoriously unreliable one upon which to base quantitative conclusions.”
When specific questions about the alleged mechanisms of AZT are asked, the answers are long, contradictory, and riddled with unknowns. Every scientific point raised about the drug is eventually answered with the blanket response, “The drug is not perfect, but it’s all we have right now.” About the depletion of T-4 cells and other white cells, Lehrman says, “We don’t know why T-4 cells go up at first, and then go down. That is one of the drug mechanisms that we are trying to understand.”
When promoters of AZT are pressed on key scientific points, whether at the NIH, FDA, Burroughs Wellcome, or an AIDS organization, they often become angry. The idea that the drug is “doing something,” even though this is invariably followed with irritable admissions that there are “mechanisms about the drug and disease we don’t understand,” is desperately clung to. It is as if, in the eye of the AIDS storm, the official, government-agency sanctioned position is immunized against critique. Skepticism and challenge, so essential to scientific progress and so prevalent in every other area of scientific endeavor, is not welcome in the AZT debate, where it is arguably needed more than anywhere else.
The results, finally and ironically, are what damns AZT.
The toxic effects of AZT, particularly bone marrow suppression and anemia, are so severe that up to 50 percent of all AIDS and ARC patients cannot tolerate it and have to be taken off it. In the approval letter that Burroughs Wellcome sent to the FDA, all of 50 additional side effects of AZT, aside from the most common ones, were listed. These included: loss of mental acuity, muscle spasms, rectal bleeding, and tremors.
Anemia, one of AZT’s common side effects, is the depletion of red blood cells, and, according to Duesberg, “Red blood cells are the one thing you cannot do without. Without red cells, you cannot pick up ???gen.”
Fred, a person with AIDS, was put on AZT and suffered such severe anemia from the drug he had to be taken off it. In an interview in the AIDS handbook Surviving and Thriving With AIDS, he described what anemia feels like to editor Michael Callen: “I live in a studio and my bathroom is a mere five-step walk from my bed. I would just lie there for two hours; I couldn’t get up to take those five steps. When I was taken to the hospital, I had to have someone come over to dress me. It’s that kind of severe fatigue. The quality of my life was pitiful… I’ve never felt so bad… I stopped the AZT and the mental confusion, the headaches, the pains in the neck, the nausea, all disappeared within a 24-hour period.”
“I feel very good at this point,” Fred went on. “I feel like the quality of my life was a disaster two weeks ago. And it really was causing a great amount of fear in me, to the point where I was taking sleeping pills to calm down. I was so worried. I would totally lose track of what I was saying in the middle of a sentence. I would lose my directions on the street.”
“Many AIDS patients are anemic even before they receive the drug,” says Burroughs Wellcome’s Dr. Lehrman, “because HIV itself can infect the bone marrow and cause anemia.”
This argument betrays a bizarre reasoning. If AIDS patients are already burdened with problems such as immune suppression, bone marrow toxicity, and anemia, is compounding these problems an improvement?
“Yes, AZT is a form of chemotherapy,” says the man who invented the compound a quarter-century ago, Jerome Horwitz. “It is cytotoxic, and as such, it causes bone marrow toxicity and anemia. There are problems with the drug. It’s not perfect. But I don’t think anybody would agree that AZT is of no use. People can holler from now until doomsday that it is toxic, but you have to go with the results.”
The results, finally and ironically, are what damns AZT. Several studies on the clinical effects of AZT — including the one that Burroughs Wellcome’s approval was based on — have drawn the same conclusion: that AZT is effective for a few months, but that its effect drops off sharply after that. Even the original AZT study showed that T-4 cells went up for a while and then plummeted. HIV levels went down, and then came back up. This fact was well-known when the advisory panel voted for approval. As panel member Dr. Stanley Lemon said in the meeting, “I am left with the nagging thought that after seeing several of these slides, that after 16 to 24 weeks — 12 to 16 weeks, I guess — the effect seems to be declining.”
A follow-up meeting, two weeks after the original Burroughs Wellcome study, was scheduled to discuss the long-range effects of AZT and the survival statistics. As one doctor present at that meeting in May 1988 recalls, “They hadn’t followed up the study. Anything that looked beneficial was gone within half a year. All they had were some survival statistics averaging 44 weeks. The p24 didn’t pan out and there no persistent improvement in T-4 cells.”
HIV levels in the blood are measured by an antigen called p24. Burroughs Wellcome made the claim that AZT lowered this level, that is, lowered the amount of HIV in the blood. At the first FDA meeting, Burroughs-Welcome emphasized how the drug had “lowered” the p24 levels; at the follow-up meeting they didn’t even mention it.
As that meeting was winding down, Dr. Michael Lange, head of the AIDS program at St. Luke’s-Roosevelt Hospital in New York spoke up about this. “The claim of AZT is made on the fact that it is supposed to have an antiviral effect,” he said to Burroughs Wellcome, “and on this we have seen no data at all… Since there is a report in the Lancet [a leading British medical journal] that after 20 weeks or so, in many patients p24 came back, do you have any data on that?”
“What counts is the bottom line,” one of the scientists representing Burroughs Wellcome summed up, “the survival, the neurologic function, the absence of progression and the quality of life, all of which are better. Whether you call it better because of some antiviral effect, or some other antibacterial effect, they are still better.”
Dr. Lange suggested that the drug may be effective in the same way a simple anti-inflammatory, such as aspirin, is effective. An inexpensive, nontoxic drug called Indomecithin, he pointed out, might serve the same function, without the devastating side effects.
One leading AIDS researcher, who was part of the FDA approval process, says today: “Does AZT do anything? Yes, it does. But the evidence that it does something against HIV is really not there.”
“There have always been drugs that we use without knowing exactly how they work,” says Nobel Prize winner Walter Gilbert. “The really important thing to look at is the clinical effect. Is the drug helping or isn’t it?”
A physician with extensive experience with AIDS patients who asked to remain anonymous told SPIN, point blank: “I personally do not prescribe AZT. I have continued to experience that people live longer who are not on it.”
“I’m living proof that AZT works,” says one person with ARC on AZT. “I’ve been on it for two years now, and I’m certainly healthier than I was two years ago. It’s not a cure-all, it’s not a perfect drug, but it’s effective. It’s slowing down the progression of the disease.”
“Sometimes I fee like I’m swallowing Drano,” says another. “I mean, sometimes I have problems swallowing. I just don’t like the idea of taking something that foreign to my body. But every six hours, I’ve got to swallow it. Until something better comes along, this is what is available to me.”
“I am absolutely convinced that people enjoy a better quality of life and survive longer who do not take AZT,” says Gene Fedorko, President of Health Education AIDS Liaison (HEAL). “I think it’s horrible the way people are bullied by their doctors to take this drug. We get people coming to us shaking and crying because their doctors said they’ll die if they don’t take AZT. That is an absolute lie.” Fedorko has drawn his conclusion from years of listening to the stories of people struggling to survive AIDS at HEAL’s weekly support group.
“I wouldn’t take AZT if you paid me,” says Michael Callen, cofounder of New York City’s PWA coalition, Community Research Initiative, and editor of several AIDS journals. Callen has survived AIDS for over seven years without the help of AZT. “I’ve gotten the s–t kicked out of me for saying this, but I think using AZT is like aiming a thermonuclear warhead at a mosquito. The overwhelming majority of long-term survivors I’ve known have chosen not to take AZT.”
“I’m convinced that if you gave AZT to a perfectly healthy athlete he would be dead in five years.”
The last surviving patient from the original AZT trial, according Burroughs Wellcome, died recently. When he died, he had been on AZT for three and one-half years. He was the longest surviving AZT recipient. The longest surviving AIDS patient overall, not on AZT, has lived for eight and one-half years.
An informal study of long-term survivors of AIDS followed 24 long-term survivors, all of whom had survived AIDS for more than six years. Only one of them had recently begun taking AZT.
In the early days, AZT was said to extend lives. In actual fact, there is simply no solid evidence that AZT prolongs life.
“I think AZT does prolong life in most people,” says Dr. Bruce Montgomery of the State University of New York at Stony Brook, who is completing a study on AZT. “There are not very many long-term survivors, and we really don’t know why they survive. It could be luck. But most people are not so lucky.”
“AZT does seem to help many patients,” says Dr. Bernard Bahari, a New York City AIDS physician and researcher, “but it’s very hard to determine whether it actually prolongs life.”
“Many of the patients I see choose not to take AZT,” says Dr. Don Abrams of San Francisco General Hospital. “I’ve been impressed that survival and lifespan are increasing for all people with AIDS. I think it has a lot to do with aerosolized Pentamadine [a drug that treats pneumocystis carinii pneumonia]. There’s also the so-called plague effect, the fact that people get stronger and stronger when a disease hits a population. The patients I see today are not as fragile as the early patients were.”
“Whether you live or die with AIDS is a function of how well your doctor treats you, not of AZT,” says Dr. Joseph Sonnabend, one of New York City’s first and most reputable AIDS doctors, whose patients include many long-term survivors, although he has never prescribed AZT. Sonnabend was one of the first to make the simple observation that AIDS patients should be treated for their diseases, not just for their HIV infection.
Several studies have concluded that AZT has no effect on the two most common opportunistic AIDS infections, Pneumocystic Carinii Pneumonia (PCP) and Kaposi’s Sarcoma (KS). The overwhelming majority of AIDS patients die of PCP, for which there has been an effective treatment for decades. This year, the FDA finally approved aerosolized Pentamadine for AIDS. A recent Memorial Sloan Kettering study concluded the following: By 15 months, 80 percent of people on AZT not receiving Pentamadine had a recurrent episode of pneumocystis. Only 5 percent of those people who did get Pentamadine had a recurring episode. “All those deaths in the AZT study were treatable,” Sonnabend says. “They weren’t deaths from AIDS, they were deaths from treatable conditions. They didn’t even do any autopsies for that study. What kind of faith can one have in these people?”
“If there’s one resistance to AZT in the general public at all, it’s within the gay community of New York,” says the doctor close to the FDA approval, who asked to remain anonymous. “The rest of this country has been brainwashed into thinking this drug really does that much. The data has all been manipulated by people who have a lot vested in AZT.”
“If AIDS were not the popular disease that it is — the money-making and career-making machine — these people could not get away with this kind of shoddy science,” says Bialy. “In all my years in science I have never seen anything this atrocious.” When asked if he thought it was at all possible that people have been killed as a result of AZT poisoning rather than AIDS he answered: “It’s more than possible.”
August 17, 1989: The government has announced that 1.4 million healthy, HIV antibody-positive Americans could “benefit” from taking AZT, even though they show no symptoms of disease. New studies have “proven” that AZT is effective in stopping the progression of AIDS in asymptomatic and early ARC cases. Dr. Fauci, the head of NIH, proudly announced that a trial has been going on for “two years” had “clearly shown” that early intervention will keep AIDS at bay. Anyone who has antibodies to HIV and less than 500 T-4 cells should start taking AZT at once, he said. That is approximately 650,000 people. 1.4 million Americans are assumed HIV antibody-positive, and eventually all of them may need to take AZT so they don’t get sick, Fauci contended.
The leading newspapers didn’t seem to think it unusual that there was no existing copy of the study, but rather a breezy two-page press release from the NIH. When SPIN called the NIH asking for a copy of the study, we were told that it was “still being written.”
We asked a few questions about the numbers. According to the press release, 3,200 early ARC and asymptomatic patients were divided into two groups, one AZT and one placebo, and followed for two years. The two groups were distinguished by T-4 cell counts; one group had less than 500, the other more than 500. These two were then divided into three groups each: high-dose AZT, low-dose AZT, and placebo. In the group with more than 500 T-4 cells, AZT had no effect. In the other group, it was concluded that low-dose AZT was the most effective, followed by high-dose. All in all, 36 out of 900 developed AIDS in the two AZT groups combined, and 38 out of 450 in the placebo group. “HIV-positive are twice as likely to get AIDS if they don’t take AZT,” the press declared.
However, the figures are vastly misleading. When we asked how many patients were actually enrolled for a full two years, the NIH said they did not know, but that the average time of participation was one year, not two.
“It’s terribly dishonest the way they portrayed those numbers,” says Dr. Sonnabend. “If there were 60 people in the trial those numbers would mean something, but if you calculate what the percentage is out of 3,200, the difference becomes minute between the two groups. It’s nothing. It’s hit or miss, and they make it look like it’s terribly significant.”
The study boasted that AZT is much more effective and less toxic at one-third the dosage than has been used for three years now. That’s the good news. The bad news is that thousands have already been walloped with 1,500 milligrams of AZT and possibly even died of toxic poisoning — and now we’re hearing that one third of the dose would have done?
With all that remains so uncertain about the effects of AZT, it seems criminal to advocate expanding its usage to healthy people, particularly since only a minuscule percentage of the HIV-infected population have actually developed ARC or AIDS.
Burroughs Wellcome has already launched testing of AZT in asymptomatic hospital workers, pregnant women, and in children, who are getting liquid AZT. The liquid is left over from an aborted trial, and given to the children because they can mix it with water — children don’t like to swallow pills. It has also been proposed that AZT be given to people who do not yet even test positive for HIV antibodies, but are “at risk.”
“I’m convinced that if you gave AZT to a perfectly healthy athlete,” says Fedorko, “he would be dead in five years.”
“This is such shoddy science it’s hard to believe nobody is protesting.”
In December 1988, the Lancet published a study that Burroughs Wellcome and the NIH do not include in their press kits. It was more expansive than the original AZT study and followed patients longer. It was not conducted in the United States, but in France, at the Claude Bernard Hospital in Paris, and concluded the same things about AZT that Burroughs Wellcome’s study did, except Burroughs Wellcome called their results “overwhelmingly positive,” and the French doctors called theirs “disappointing.” The French study found, once again, that AZT was too toxic for most to tolerate, had no lasting effect on HIV blood levels, and left the patients with fewer T-4 cells than they started with. Although they noticed a clinical improvement at first, they concluded that “by six months, these values had returned to their pretreatment levels, and several opportunistic infections, malignancies, and deaths occurred.”
“Thus the benefits of AZT are limited to a few months for ARC and AIDS patients,” the French team concluded. After a few months, the study found, AZT was completely ineffective.
The news that AZT will soon be prescribed to asymptomatic people has left many leading AIDS doctors dumbfounded and furious. Every doctor and scientist I asked felt that it was highly unprofessional and reckless to announce a study with no data to look at, making recommendations with such drastic public health implications. “This simply does not happen,” says Bialy. “The government is reporting scientific facts before they’ve been reviewed? It’s unheard of.”
“It’s beyond belief,” says Dr. Sonnabend in a voice tinged with desperation. “I don’t know what to do. I have to go in and face an office full of people asking for AZT. I’m terrified. I don’t know what to do as a responsible physician. The first study was ridiculous. Margaret Fischl, who has done both of these studies, obviously doesn’t know the first thing about clinical trials. I don’t trust her. Or the others. They’re simply not good enough. We’re being held hostage by second-rate scientists. We let them get away with the first disaster; now they’re doing it again.”
“It’s a momentous decision to say to people, ‘If you’re HIV-positive and your T-4 cells are below 500, start taking AZT,’” says the AIDS doctor who wished to remain anonymous. “I know dozens of people that I’ve seen personally every few months for several years now who have been in that state for more than five years, and have not progressed to any disease.”
“I’m ashamed of my colleagues,” Sonnabend laments. “I’m embarrassed. This is such shoddy science it’s hard to believe nobody is protesting. Damned cowards. The name of the game is to protect your grant, don’t open your mouth. It’s all about money… it’s grounds for just following the party line and not being critical, when there are obviously financial and political forces driving this.”
When Duesberg heard the latest announcement, he was partially stunned over the reaction of Gay Men’s Health Crisis President Richard Dunne, who said that GMHC now urged “everybody to get tested,” and of course those who test positive to go on to AZT. “These people are running into the gas chambers,” says Duesberg. “Himmler would have been so happy if only the Jews were this cooperative.”
* = This sentence was changed to correct an error in the original version of this article, which wrongly stated that the FDA had approved Thalidomide.
The rise and fall of AZT: It was the drug that had to work. It brought hope to people with HIV and Aids, and millions for the company that developed it. It had to work. There was nothing else. But for many who used AZT – it didn’t
RUMOURS about the drug had been circulating since early 1985 when word came from America that a company in Carolina had found a compound that was effective against HIV – at least in a Petri dish. Two years later, by the time AZT had been licensed for use, demand for it had grown to gigantic proportions.
By then, Aids patients had grown so desperate that they would sample any of the bootlegged underground therapies, some of which were probably life-threatening. With the arrival of AZT, doctors who had been powerless for so long against a syndrome about which they knew so little, at last had something they could give their patients that had passed stringent official tests.
In March 1987, when AZT was available on prescription for the first time, almost everyone with Aids wanted to take it, as did many who had tested positive for HIV. One of these was Michael Cottrell, a gay Englishman. He had tested positive for HIV in 1985 at the age of 22. He took AZT for several months in the late Eighties and suffered severe side-effects from the drug: chronic headaches and nausea, debilitating muscle fatigue. Cottrell felt much worse on AZT than he did off it. But he persevered because it seemed AZT was the only anti-Aids drug there was.
So Cottrell took it early in his infection: after all, if AZT was judged to be effective in treating Aids, then perhaps, it was thought, it would also benefit those who took it before they became ill. AZT spelt hope: psychologically it served to dispel despair. It was never claimed to be a cure, but it did claim to keep you alive longer, and in that extra time it bought, who knew what would happen? Maybe a cure would be found. Maybe a vaccine. Maybe other drugs would be developed to fight the disease, too.
Cottrell still has boxes of AZT capsules at home. He gave up on it after several months, because he couldn’t stand how ill he was feeling on the drug; he felt as though his immune system was being damaged rather than strengthened; he believed he had never encountered a drug as toxic as AZT.
Cottrell knew the drug didn’t work for him, but he believed he might have been one of the unlucky ones, like people who react badly to penicillin. Then a month ago he woke up to the news that the drug didn’t work on HIV at all, and that all his suffering had been avoidable.
Concorde, an Anglo-French programme, was the biggest clinical trial of AZT ever conducted: 1,749 patients over three years. It did not examine how effective AZT was in treating people who were seriously ill with Aids but, just as important, it looked at how effective the drug was in treating the millions of people with HIV, before they became unwell and showed Aids symptoms. Preliminary results of the trial were published in a letter in the Lancet, and made headlines worldwide. The results suggested that early intervention with AZT – for people who were HIV but had not yet developed any symptoms of Aids – was a waste of time. The study, organised by the British Medical Research Council and the equivalent body in France, reported that it made no difference to either mortality rates or disease progression if one took AZT before the onset of Aids.
In a ‘blind’ test, AZT was given to 877 people and 872 were given a placebo. As soon as a patient developed any Aids symptoms, he or she (15 per cent were women) would be offered ‘open-label’ AZT. The mortality rates appeared to be shocking: over the three years of the trial, there were 79 Aids-related deaths in the AZT group, but only 67 in the placebo group. The researchers explained that among so many patients this figure was not statistically significant, but if you were HIV-positive and read of this in the newspapers, you were bound to question all the great claims that had been made for AZT. More people got Aids and died on Concorde than on any previous trial.
There were other causes for concern. Those on AZT developed more side-effects than those on the placebo. The results of the tests also cast doubt on one of the fundamental ways we measure a person’s immunity to disease. Those given AZT early increased their ‘CD4’ or ‘T4’ cell count; these are the cells attacked by HIV, and their numbers drop as the disease spreads. But the fact that, even with this higher count, patients did not live longer or develop the disease more slowly, struck at one of the basic tenets of Aids research.
Cottrell told the news to his 28-year-old partner Karl Burge, who had been diagnosed as HIV-positive four years ago, and they decided to take action. But what could they do? They had already joined protests against Wellcome plc, the British company that made AZT and had reaped millions in sales and share profits. Wellcome executives had listened to their complaints, and had admitted to certain levels of toxicity in AZT, but claimed that their product still had great beneficial effects. They were not readily going to halt production of the drug that last year made them pounds 213m, their second biggest earner.
So Cottrell and his friends selected a new target, the Terrence Higgins Trust. This was a strange choice: the trust, Britain’s most prominent Aids charity over the past 10 years, is staffed by dedicated professionals and volunteers providing a large range of support and information about all aspects of Aids and HIV; it developed the caring ‘buddy’ system; it produced information for schools; it sat on many Aids research panels and often met government departments.
So what had it done wrong? It had taken money from Wellcome plc and included positive information about AZT in its many leaflets and documents. Cottrell and his friends felt they were being betrayed by the very organisation that they had believed existed to act in their best interests; they felt that what was once an invaluable institution was acting as a mouthpiece for a multinational pharmaceuticals company.
Last week, Cottrell and Burge were still pitched outside the Terrence Higgins Trust office in central London, four weeks after their protest began. On Wednesday they were arrested and charged with a public order offence after a member of the trust called the police. The protest is growing by the week. They have been joined by John Stevens, diagnosed HIV- positive more than eight years ago, and who also had bad experiences with AZT, and Pierre Hardy, diagnosed HIV-positive four years ago when he was 27 and had felt devastated by its effects. Many other protesters carry placards, collect signatures, hand out leaflets. You will not find a more potent symbol of the complex story of AZT, a story of how the struggle to find a ‘magic bullet’ to help millions of people has degenerated into a saga of distrust, confusion, and anger. It is a story of health and illness, but it is also a story of scientific ambition, secrecy and political pressure, and of the amounts of money that can be generated when a lethal virus turns into a worldwide epidemic.
IN 1964, Jerome Horwitz was working in his laboratory at the Michigan Cancer Foundation when he had what he hoped was a brilliant idea. At 45, Dr Horwitz was the foundation’s director of chemistry, and although not in the scientific premier league, was a respected local researcher with his own lab and assistants. He had spent much of the previous decade doing what many of the world’s leading scientists had done – working on a cure, or at the very least an effective treatment, for cancer.
He developed a theoretical solution: what was needed was a chemical that would insert a ‘phoney’ compound into the DNA ‘building block’ of a cell to prevent its replication. After years of research, Dr Horwitz came up with
He tried his new compound on leukaemic mice, but it had no effect. Horwitz didn’t know why, but AZT didn’t work.
Horwitz never became famous. Recently he said AZT ‘was a terrible disappointment . . . we dumped it on the junkpile. I didn’t keep the notebooks.’ The compound remained ‘on the shelf’, occasionally tried by other researchers but always found to be useless. There was no reason to patent it. But 20 years later, Burroughs Wellcome brought it back to life.
THE WELLCOME group was founded in London by two Americans in 1880. Its first significant achievement was the creation of the tablet – previously most medication had been administered in powder form. In the 1930s the group was split into two distinct parts: the Wellcome Trust, a large charity which devoted its income to scientific research and the maintenance of an institute and library concerned with the history of medicine; and the Wellcome Foundation Ltd, a profit-making pharmaceuticals company that was called Burroughs Wellcome in the United States. In the course of its research, Wellcome employees have won five Nobel prizes.
By 1980, Wellcome had specialised in the treatment of viruses for more than 15 years, and its anti-viral drugs accounted for the bulk of its income. In that year, David Barry, a leading researcher at Burroughs Wellcome in the US, noticed that demand for its drug Septra – a drug that Wellcome had helped to develop a few years earlier to combat a rare form of pneumonia – was suddenly on the increase. Previously this pneumonia, known as PCP, was prevalent only in children with leukaemia, but now many doctors were requesting it for adult males. Most of these men were gay, and living in New York and San Francisco.
Two years later, another new Wellcome drug, Zovirax, was in great demand among the same group of people. Zovirax was an anti- herpes treatment. Dr Barry was very disturbed by the sudden demand for these two drugs.
Aids (Acquired Immune Deficiency Syndrome) was first classified as a new disease in 1981, but it was not until 1984 that the cause was identified as HIV (Human Immunodeficiency Virus). This cause has since been challenged by several prominent molecular biologists, but it remains the cornerstone of Aids research. And if any company was ideally equipped to conduct research into combating a new virus, it was Wellcome.
It was only natural for Barry to devote much of the company’s research resources to fight HIV. No one knew how widespread the virus or Aids was or would become. In 1984, only about 3,000 people had been diagnosed with Aids, but some early forecasts were terrifying: millions of people might already be infected, and hundreds of thousands could die within the next few years. Any scientist could see that Aids was potentially a career-making race to the Nobel prize. Millions might be made from a successful treatment.
After a few years of government inactivity – shameful years in which this new disease was virtually ignored – political ambition added to the desire to find a treatment. Health departments noticed that it wasn’t just homosexuals who were being struck down, but also hundreds of haemophiliacs and drug users. A certain amount of official panic took hold: by the time Rock Hudson died in the summer of 1985, it was clear that anyone – even film stars – could be in the frontline.
According to Wellcome’s own three-page account, research into HIV began in June 1984. During mass testing of scores of anti-viral
compounds, a substance known at first only as Compound S was found to inhibit viruses in animal cells. Compound S was AZT, a resyn- thesised version of what Horwitz had made 20 years before (Wellcome credits Horwitz in its account, but spells his name wrong).
In November 1984, according to the Wellcome account, the company sent samples of AZT to Duke University in North Carolina, the Food and Drug Administration (FDA) and the National Cancer Institute for independent testing, and within a few weeks the results confirmed what Wellcome already believed: that the stuff worked against HIV in test-tubes under laboratory conditions. Wellcome had already progressed further than Horwitz, but the real test – its effect on humans – was fraught with danger.
But first there is another account of the development of AZT to consider. A US government official named Sam Broder believes he has far more claim to being ‘Mr AZT’ than anyone at Burroughs Wellcome. Broder, the director of the National Cancer Institute, claims that Burroughs Wellcome showed little interest in developing an anti-Aids drug.
Broder went on a tour of pharmaceuticals companies towards the end of 1984, imploring them to send any possible anti-viral compounds to his lab for testing in safe conditions. ‘I went to one prestigious company, hat in hand,’ he told the business writer Bruce Nussbaum, whose book, Good Intentions, traces a history of the search for anti-Aids drugs. ‘I got about one minute and thirty seconds of a high-ranking officer’s time. It was very disappointing for me. It was emblematic of the issue. There was no real interest in it.’
Broder then went to Burroughs Wellcome. He says: ‘They made it clear that on the basis of 3,000 patients, there was no way they could practically get involved.’ Broder says he then became abrasive. ‘As I left, I said, ‘You know, we’re going to have more than 3,000 cases. It is going to be commercially viable for you . . .’ ‘
Whoever pushed who, the drug came through. When Broder found that the AZT sent to him by Burroughs Wellcome in November 1984 worked against the virus, he assured the company that every effort would be made to get this great new drug to dying patients as soon as possible. The FDA’s stringent testing requirements mean that most new drugs take between eight and 10 years to pass from development to the marketplace. AZT was pushed through in just 20 months.
This could have been the early history of almost any drug; the difference is, during what would normally have been an eight-year test period, for six of those years the drug was already on the market. At a time of desperation, this drug looked like the one that would restore hope. The National Cancer Institute had previously tried one other therapy, Suramin, which proved to be toxic in early tests, but AZT appeared to be far less poisonous. And so it was put on the ‘fast track’: the testing of some other drugs for less life-threatening illnesses was put aside; AZT was given top priority, an all-or-bust thing. But could any drug live up to the boundless hopes pinned on AZT?
THIS IS how AZT is supposed to work against HIV. HIV enters body cells, usually T4 white blood cells that play a crucial role in the orchestration of the body’s immune system. HIV is one of a group of viruses known as retro- viruses, which means that, unlike most living things that store their genetic information as DNA, HIV stores it as RNA. Before HIV can replicate, it must convert its RNA code to DNA by use of a special enzyme. It is during this conversion process that AZT works. When AZT enters the body, it is transformed into a molecule that closely resembles one of the building blocks of DNA. During the process of HIV conversion, this molecule is incorporated mistakenly into the DNA. The addition of this ‘phoney’ molecule makes the addition of further building blocks impossible and halts replication of the virus. It’s a form of chemotherapy. It worked fine under a microscope.
The first human tests were in two phases. The first examined whether AZT could be tolerated in the body at all, and whether it entered the brain, crossing the ‘blood-brain barrier’; to know this was important, because a common Aids symptom is dementia. The first Aids patient was injected with AZT in July 1985. This test concluded that the blood-brain barrier was crossed, and that although there were levels of toxicity detected, these were deemed to be safe.
The second phase of the tests, the final hurdle to the granting of a licence for mass production, was a shambles. It was set up six months later to establish whether AZT would combat Aids. This test, overseen by the Food and Drug Administration, involved 282 patients, all of them already ill with Aids or Arc (Aids-related complex). It was to be a placebo test, conducted over 24 months. It was to be a ‘double-blind’ study in which neither patient nor doctor knew whether the capsules being taken were AZT or starch. (But before the tests could begin, Wellcome had to produce large quantities of AZT, and found it couldn’t do it. It had run out of one crucial ingredient: herring sperm. Finally, Wellcome bought it in bulk from another company.)
At a press conference after the tests in September 1986, Wellcome reported that they had been a considerable success, such a success that the 24-week trial had been halted after 16 weeks for ‘ethical’ reasons. Mortality rates for people taking AZT were staggeringly lower than those taking the placebo; there had been 19 deaths in the placebo group of 137 people, but only one in the AZT group of 145. Those on AZT also had a decreased number of opportunistic infections and showed improvement in weight gain and T4 cell counts. Wellcome agreed in response to pressure from some sectors of the gay community that if AZT was effective, then dying people should be taken off the placebo at once.
No one claimed it was a cure, but there was huge relief that a breakthrough had been made. There had been much embarrassment when it became known that Rock Hudson had attended the Pasteur Institute in France for treatment; now at last America was showing those foreigners a thing or two. Robert Windom, assistant health secretary, said that ‘treatment with AZT prolongs survival of persons with Aids’. The results were ‘exciting’.
It was not suitable for everyone, but it was the best thing yet. In fact, it was the only thing. Last year, interviewed in the Wellcome in- house magazine, David Barry said that ‘the staff at Wellcome can tell our children, grandchildren and great-grandchildren that we were there, that we made a difference’. When it was shown that AZT worked, ‘we . . . first had a frenzied, cheerful celebration, and then a very quiet one. The longer we considered the global implications, the greater the accomplishment we realised Wellcome had made in the control of the HIV epidemic.’
But a few months after AZT was made available, John Lauritsen, a journalist working on the gay newspaper New York Native, obtained test documents through the Freedom of Information Act that suggested that many rules had been broken in the trials. The trial had been ‘unblinded’ within weeks: some patients claimed they could tell what they were taking by taste; others were so keen to have AZT that they pooled their treatment with other patients to increase their chances of receiving the drug. The documents showed that almost half the AZT patients had received numerous blood transfusions in the course of the trial, because of damage to their bone marrow and immune systems; and that a few had to be taken off AZT altogether.
What happened after the trial ended suggested something more alarming about AZT. After 16 weeks, one AZT patient was dead, compared to 19 placebo patients; a week later two more patients on AZT had died, compared to four more on the placebo. The ratio had switched from 19:1 to 23:3, which suggested AZT might only be effective for a limited time.
If the trial had continued, the ratio might have narrowed even more. The tests would probably still have shown that AZT has some benefits for very ill patients, but with hindsight it is alarming that a new drug was allowed to be
released with so much left to prove. People at Wellcome now put it down to the mood and the severe pressure of the times. Dr Trevor Jones, Director of Research at Wellcome, who has been involved in their development of AZT from the beginning, acknowledged that the trials were subject to extraordinary pressures. ‘Much of these accusations (about the breakdown of trial protocol) took place, not at that stage, but later on, when the drug was showing benefit in a less sick population.
All sorts of things we heard stories about, and some of them I think we can confirm from our data. Patients would go to their doctor, get their treatments, and rather than risk the uncertainty (or receiving the placebo), they’d put the two together, mix them and divide them by half. We know this, because people who were supposed to be on the placebo already had drug levels in them.’
Much of the pressure came from people with HIV and Aids, and their carers, who wanted the drug released immediately. It was unacceptable to administer a placebo, they argued, if AZT worked. And there was no point having a drug released on the market in 10 years – by that time hundreds of thousands would be dead.
Burroughs Wellcome and many other independent research institutions would spend every subsequent year trying to supplement their data on AZT, trying to find out all the things that would normally be known about a drug before it hit the market. In these later years AZT was to become for many people the symbol of all that was wrong with Aids research. Once AZT was shown to have worked, almost all available funds were channelled to support its development and other potential treatments, along with any doubts that HIV was the cause of Aids, were swept aside.
BUT IN 1986, AZT was unstoppable. It suited the FDA, because it showed the administration was doing something. It suited Wellcome, because it now had a patent on AZT (and by 1986, with the epidemic increasing alarmingly, there was no doubt that the financial rewards would be enormous). It suited doctors, because they believed they could help their patients. And it certainly suited people with Aids. Some people had doubts, but hell, if you were ill and dying you wanted to believe. After all the despair and uncertainty, people in authority were saying ‘take this, it’ll do you good’.
Cottrell was one of the first people to take AZT in Britain. He was prescribed it in 1986, before it was widely available, when he was 23.
‘I had recently been diagnosed HIV-positive, and I went into a panic. I thought I was going to die. I remembered something about this drug coming from America and everyone clamouring to get it. I was perfectly healthy. My boyfriend’s blood count was quite low, and he was prescribed it by St Stephen’s Hospital, and I took it too. Intuitively, I didn’t think it was doing me any good. I was prescribed it three times over a period of three years, and I took it out of fear. I was first prescribed 1,200mg a day, and then 500mg, but I still felt bad, even on the lower dose. I had nausea and headaches and muscle fatigue.’
Cottrell took it every four hours, which meant he had to have a bleeper that woke him at three or four o’clock every morning. (People joked that the real Aids money lay in making these bleepers; in New York in the late Eighties, opera performances were punctuated by bleeps.) Cottrell stopped taking AZT after a few weeks, but then he got scared, and began taking it once more. ‘I got my drugs every two weeks – a big plastic bagful. I felt that I was carrying my life around in that bag.’
His friend, Pierre Hardy, was diagnosed HIV in 1989, when he was 28. At a specialist clinic he was given a sheet of paper which explained that AZT was the most efficient treatment, but also that it hadn’t been around long enough for anyone to know the long-term effects. Like most people in his position, he said he’d try anything, and he was prescribed 500mg a day.
‘My T4 count went up along with my general health in the first year, and everything settled down. I had been on AZT for three years, and my T4 count was levelling between 400 and 600 (an average T4 count in healthy adults is between 800 and 1,000). And then last year I started to get sick. I had repeated chest infections, and in November 1992 I had a stroke. I was hospitalised in a specialist ward. I asked them for my T4 count, and when they came back, they were were uncomfortable about it. My T4 count was 90. I thought I was finished.
‘When I got home and started to review the whole thing, the whole HIV theory. I threw away all the pills I was taking – I was taking seven every morning and evening. I started to change my diet, and then I went back to my doctor. When I had my new T4 count it was 545. I’ve had three migraines since January, a little bit of asthma coming back, but basically I feel much better. If I’d continued to believe in the traditional medicine sytem I would have been dead either this year or next year.’
Two weeks ago Hardy met a volunteer with the Terrence Higgins Trust, who told him that he and his boyfriend were taking AZT and it was working like a dream.
‘I asked him how long they were on it. He said four months. I said that that was the trap that everyone was falling into. The AZT will work for you for a little while, for the maximum of one year, as it did for me, and afterwards the damage became visible.’
Most people with Aids, and many with asymptomatic HIV, take or have taken AZT. Other drugs have emerged in the past few years that work in a similar way – DDC (produced by the Swiss company Hoffmann-La Roche) and DDI (made by the American company Bristol-Myers Squibb), but AZT is still the market leader. It is hard to think of another product that is so dominant in its field. You read the showbiz autobiographies and those three little letters snap out of the page.
Earvin ‘Magic’ Johnson, the basketball star who tested HIV-positive in October 1991, was advised to take AZT immediately. He agreed. ‘There was a lot of public interest in the fact that I was taking AZT, which was originally used only in the later stages of the illness,’ he explained in My Life, his autobiography. ‘These days it’s used as a preventative, but not everybody knew that. That may be why some people, including a few reporters, concluded that I was sicker than I actually was.’ People wrote to Johnson telling him that AZT was not the answer. Somebody advised him to drink all his blood and replace it with new blood. ‘Even now I can’t go anywhere without somebody coming up and saying, ‘I know this friend who knows this doctor who has a cure’.’
Rudolf Nureyev, who died in January, began taking AZT in 1988. ‘AZT was just beginning to be used in France,’ said Michel Canesi, his doctor. ‘I didn’t want to give it to him straight away, because I was worried that the side-effects would hamper him (Nureyev was still dancing at this time). Rudi lost his temper and said: ‘I want this medicine.’ I replied that there hadn’t been long enough to judge the results. But I had to give in and prescribe it – he was so insistent. But he didn’t take it regularly. He went off every time with tons of drugs, and every time I went to see him I found unused packets all over the place.’
The film-maker Derek Jarman, who was diagnosed HIV-positive in 1986, has found AZT beneficial. ‘It works – it holds everything up. It stops the virus replicating. At the beginning they gave people much too massive doses, which affected us physically. I had no recognisable toxic side-effects from it. I began taking it in September 1990, I think, and I came off it last August.
‘I was invited by my doctor to make up my mind whether I took the drug or not, so I rang up various people in America and the general advice was to take it – and this was advice was from quite radical people, not people in with the Wellcome Foundation.
‘I came off it because my doctor said that my (T4) count was down. We’ve never discussed it since. He just suddenly said, ‘I think you’ve had enough AZT, Derek’, and I very much trust him, he’s a brilliant doctor. The whole thing is so complicated, because I took a lot of other drugs as well. I had to have suppressants for TB, toxoplasmosis and PCP. And then obviously if I got an infection there was fluconazole and all of that area. And then at a certain point they added hydrocortisone and fludrocortisone to keep my energy up.’
Jarman has recently been in hospital. ‘At the moment I’m actually on nothing. I’ve had a skin complaint and they decided it would be very sensible to take me off all my pills, and then go back on the drugs to see if they were causing the skin complaint. They can obviously play around with the drugs.
‘My feeling about AZT is that I’m glad I took it, even though I can’t prove to you that it did anything. You can say that if it helps someone psychologically then it must be doing some good. I think the doctors generally feel that it does some good. But how do you know?’
FINANCIALLY, Wellcome plc has done extremely well out of AZT. Retrovir, the drug’s brand name, accounts for more than 13 per cent of its total income, and yielded pounds 213m last year. As the only big earner to have been launched by the company in the past decade, the continued success of AZT is crucial to its growth. The company will be well aware that at the end of last year the World Health Organisation estimated that about 13 million men, women and children have been infected with HIV since the start of the pandemic. (A large proportion of these cases are in sub-Saharan Africa and South and South-east Asia, where AZT and other anti-Aids treatments are unlikely to be available or affordable; the figure for HIV infection in the Americas and Western Europe is estimated at 2.5 million.)
Part of the Wellcome Foundation was floated on the stock market in 1986, the year of the AZT breakthrough. Subsequent rises in share prices have been directly linked to the fortunes of the drug and the results of new trials. In February 1987, the share price jumped 73.5p to 374.5p on the news that AZT would be widely available in the US at dollars 188 for 100 capsules, an extremely high price for a new drug, and one that would yield large profits (this translated to about dollars 10,000 a year for every user). By November 1989 the share price had almost doubled to 724p; year-on-year pre-tax profits were up 28 per cent to pounds 283m. In early 1993, the share price was at 810p; last year’s pre-tax profits were pounds 505m.
‘In terms of the emotive quality of the demand, there’s never been a drug like it,’ said Martin Sherwood, a Wellcome spokesman, shortly after AZT’s launch. It was just this emotive demand that led to the picketing of the Wellcome shareholders’ meeting in January 1990. Act Up (the Aids Coalition to Unleash Power, co-founded by the playwright Larry Kramer) picketed the AGM at Grosvenor House in London, describing it as ‘a gathering of Aids profiteers’. Activists complained about the price of AZT, and what they saw as Wellcome’s reluctance to provide all available information on the drug.
Wellcome shareholders were irritated by this intrusion, not least when Act Up members interrupted the meeting and insisted on talking to Sir Alfred Shepperd, the outgoing chairman. But Wellcome executives were baffled: they believed they had done everything they could to benefit people with HIV and Aids, certainly more than any other pharmaceuticals company. Was it not these very same activists who had celebrated when AZT was launched three years earlier? At first Wellcome defended its pricing on the grounds that AZT took dollars 80m to develop and produce (later revised to dollars 30m), but it soon bowed to pressure (and its economies of scale) and cut the price. The recommended dosage was also reduced for medical reasons, which meant many more people could tolerate its toxicity. Today AZT costs about dollars 3,000 per person per year, or about pounds 2,000.
As would be expected, Wellcome plays up the good news. When, in 1989, two double- blind placebo trials of the effects of AZT on asymptomatic and less seriously ill patients showed that it could delay the progression of the disease, much was made of the results and the share price rose by 30p. But when, four months later, the company admitted that AZT had caused cancer in rodents, it explained that the rats and mice were given 10 times the dose prescribed to humans, and that several other drugs in use by humans had also produced tumours in animals when administered over long periods. Wellcome’s share price went down one penny.
Wellcome’s PR machine is an impressive force, and much money is spent on convincing the media of AZT’s worth. You go and see them and you get a lot of bumph: how AZT works, why it is more effective than other anti- retrovirals. Wellcome house-magazines talk of the extra 400,000 productive years of life it has made possible through the drug, about how many thorough and independent studies have stressed AZT’s efficacy.
‘The number of people who have shown agression against us concerns us no end,’ says Trevor Jones. ‘Normally the company tries to distance itself from the patient / physician interaction – it must do. The day-to-day therapy of the patient is not our responsibility. But about three years ago we started to open our labs to people with HIV and their carers, contrary to the advice of my security and other colleagues. You then realise the uncertainty and the frustrations involved in that act of taking a tablet for the very first time. When people with HIV came through the door of the lab I could almost touch their anger. But I realised that the anger was not really about Wellcome or me, but about their mortality. They were frustrated, and saying, ‘Please, please what can I do?’ These were genuine cris de coeur.’
Dr Jones is one of the few pharmaceutical industry representatives on Britain’s Medical Controls Agency. Wellcome has clearly selected its spokesman with care. ‘People say we’re purely acting out of commercial interests, but it is not in our commercial interests to do anything else but get this drug right,’ Dr Jones says. ‘We wanted to show people that we are working night and day, weekdays and weekends trying to develop better medicines. Otherwise we look like ogres and robber barons all the time. That’s the whole history of our business; if you’ve got a problem with a product, you must, you must, you must tell people. The criticism hurts a lot; our integrity as a scientific body is important to us. I don’t take too kindly to people saying, ‘Oh, you don’t want to listen to Wellcome, because they would say that, wouldn’t they?’ You can’t hide anything in this business, because otherwise who will trust us when we develop another drug, like the new epilepsy drug we’ve got now? You have to believe that the integrity of science is good.’
Jones has had a bad few weeks. Wellcome’s share price was hammered by last month’s Concorde trial report, falling 10 per cent to 670p, before rallying to 692p. Five days after the report appeared, Wellcome staged a damage limitation exercise, at which Jones told a press conference that he was unhappy with the way the results were released, without peer review or advice to patients, and saying it had caused panic among those with HIV. He said that the full results had yet to be released, and hoped that a more beneficial picture of early intervention with AZT would emerge at the ninth International Aids Conference in Berlin in June. He also outlined that the protocol of the study had changed from that agreed in 1988. When an American study reported in 1989 that AZT did have beneficial effects on people with asymptomatic HIV, the Concorde officials decided that people on its trial could switch to AZT if they wanted to; this may have led to a diluting of the results.
Last week, Jones reiterated why AZT may still be beneficial, and why doctors should continue to prescribe the drug early. ‘We have gathered together 10 studies on asymptomatic patients. Five of these are control studies with placebos, and five are cohort studies, in which we simply give the drug and observe what happens. These studies involved more than 6,500 patients and ranged from one to four years in duration. We believe we have accrued sufficient data to show that taking the drug when you’re asymptomatic does delay the onset of further symptoms.’
WELLCOME has a presence at all the chief Aids conferences, and will occasionally organise gatherings of its own. In June 1992 it launched Positive Action, ‘an international intiative’ in support of those with HIV and Aids. For the launch conference in London, journalists flew in from all over Europe to hear Wellcome executives describe how pounds 1m was being distributed to many educational organisations. An emotional climax of sorts was provided by Jerry Breitman, the company’s US director of professional relations. He was there to present the ‘workplace initiative’, and his speech contained a little surprise at the end. Like the wig salesman whose coup de grace is to rip off his own toupee, Breitman declared himself HIV-positive. ‘I thought long and hard before deciding to tell my management,’ he revealed. ‘But . . . when you are part of an enlightened organisation such as Wellcome, I am absolutely convinced that communicating your HIV infection is a positive action . . . It is, truly, one of the best decisions I have made in a very long time.’ A few journalists felt distinctly queasy at the theatricality of it all.
One of the initiatives raised was Wellcome’s involvement with the Terrence Higgins Trust. This first surfaced in 1991, with the publication of four information leaflets. Two months ago staff at the Trust and volunteers read in their newsletter that the link had been strengthened. The newsletter explained that ‘THT, along with the Wellcome Foundation, is about to begin producing an important new medical information series. THT are providing a series of medical updates for all staff and volunteers. We will be providing them on a regular basis every two months in the evening. Costs will be met by the Wellcome Foundation, which also funds our series of general booklets.’
Nick Partridge, chief executive of the trust, is dubbed ‘Nick the Sick’ on the placards carried by the protesters outside his office. Partridge, in reply, calls them ‘New Age flat- earthers who have a naive hope that Holland & Barrett will produce a herbal tea that will be effective against HIV.’ Partridge said that the trust actively pursued funding from a wide range of companies and government agencies, and that it was ‘quite clear that none of that funding involves an ability by those companies to influence the information we produce. We would be neglecting our duty if we were not in regular contact with Wellcome, Bristol-Myers Squibb and Roche, arguing for greater investment in HIV research and fair and balanced information. The leaflets are not about treatment issues.’
But once they were. In 1991 the trust produced a 24-page booklet on HIV and its treatment; nine pages were devoted to AZT, but only half a page was given to other therapies. The copyright on the leaflet was held by the Wellcome Foundation, which also paid for its printing. ‘It was only available for eight months,’ Partridge says. ‘Information changes quite rapidly. The main fault of that leaflet is that it is too hopeful. By 1991 the hopes around early intervention had probably gone further than we realise, in retrospect, was wise. The desire by many people with HIV to say, ‘Yes, we can live with this infection’ meant that a lot of hope was invested in the theory of early intervention. For all its faults, our leaflet was still a lot more realistic than the material that Wellcome was putting out on its own. Remember that over the years, there have been many stories of breakthroughs that proved to be wildly optimistic.’
FOR MOST people with HIV, the AZT dream is over. AZT is the future that was; no one believes in the ‘magic bullet’ any more. It does have benefits for some patients who are seriously ill, but there is now severe doubt over its other uses. This, after the drug has been subjected to more tests, and has been the subject of more post-launch research papers, than perhaps any other modern therapy.
The future for HIV and Aids treatment appears to be in combination treatment – the use of AZT and DDC and DDI and many other compounds used in all manner of variations. Several trials are in progress. Two weeks ago it was announced that Wellcome has joined forces with its competitors Hoffman-La Roche, Bristol-Myers Squibb, Glaxo, SmithKline Beecham and 15 other companies, in an attempt to pool their research knowledge and find an effective treatment.
Wellcome is also developing some other anti-Aids drugs on its own. We won’t hear about these for a while; the company doesn’t want to raise any hopes.
Jerome Horwitz, the man who created AZT in 1964, is still active in medical research. He’s 74 now, but you can still reach him most days at the Meyer L Prentis Cancer Center in Detroit. Occasionally he does a little Aids work, but most of his time involves cancer chemotherapy.
Horwitz believes AZT is not the answer to HIV and Aids, but has hopes for combination therapies (he was also the first to synthesise DDC). He concludes that AZT ‘buys time’.
‘We were certainly on the cutting edge,’ he says of his work in the mid-Sixties. ‘When the pharmacologist said, ‘Look, Dr Horwitz, your compounds are not effective against leukaemias and I see no future for them’, that was like a blow to the solar plexus. We had great hopes. ‘I remember one of my students saying at the time that we had a great series ofcompounds just waiting for a disease totreat. It took 25 years before our beliefs were vindicated.’
The first Horwitz heard of AZT’s use against HIV was when he read about it in the Wall Street Journal. Burroughs Wellcome established a chair in his name at the Michigan Cancer Foundation, but he has received no financial reward.
‘My wife sits across from me at the
breakfast table and reminds me of all the
money that Burroughs Wellcome has got out of it and I haven’t got a dime. I keep telling her about the legacy I’m leaving. But I wouldn’t be being absolutely straight with you if I hadn’t thought that I should have gotten something out of it.’-
“I will always remember the moment when a pretty faced, slightly chubby blonde boy turned up at the door of The Cha Cha Club wearing a rather hideous blue velvet cape. He told me his name was Leigh Bowery, followed by, “Graham sent me to you.” It was late October 1981.
My friend Graham Parnham had met Leigh at Andrew Logan’s Alternative Miss World earlier that month. Leigh didn’t know anybody on the club scene in London so Graham had sent him along to my club telling him that I would look after him. “You’ll like him.” Graham had told me, “. . . he’s Australian and a bit bonkers.” Graham was right. I liked him immediately.
Leigh had a generous spirit and sharp wit, was extremely polite and charming. I told him I’d be glad to let him in to the club so long as he promised me that he would never wear that velvet cape again. We laughed, the first of many laughs that we were to have.
It would be two or three years before Leigh started creating looks and dressing in his extraordinary and very outrageous style. Back in 1982 and 83 he wanted to be a fashion designer and would create 1940s inspired pyjama suits for me, Trojan and himself.
He’d make me dresses to wear to the club, shrewdly knowing that they would be photographed aplenty. He’d hand write labels with indelible laundry marker and stitch them into his creations. I would look forward to the Tuesday afternoons when Leigh would arrive with something new to wear out that night.
The world quite rightly remembers Leigh Bowery as the brilliant and unique performance artist that he became. Though we remained friends throughout his life, for me there is a sweetness to remembering our close friendship of those early years and the extraordinary evolution of the pretty faced, slightly chubby blonde boy in the hideous blue velvet cape.
We lost Graham to AIDS in the spring of 1994.
We lost Leigh the same year, on New Year’s Eve.”
— by Scarlett Cannon
Sex, sin and sausages: the debauched brilliance of Leigh Bowery
His shocking shows – featuring births, enemas and vomiting – thrilled and appalled. Two decades after his death, why is the influence of this 80s nightclub legend still so pervasive?
e was painted naked and sprawling by Lucian Freud. He “gave birth” to his own wife on stage, using sausages as an umbilical cord. And he was the star turn in Taboo, perhaps the most debauched nightclub Britain has ever seen, hosting the revelry with his face painted blue, his nose and nipples pierced and his outfit as intimidatingly outlandish as possible. But there was much more to Leigh Bowery than sheer outrageousness – and his range, daring and influence are now starting to be appreciated by a new generation.
Perhaps the most prominent sign of this reappraisal comes from Australian choreographer Andy Howitt, who is bringing Sunshine Boy, a new show about the nightlife legend, to the Edinburgh fringe this summer. “I was at the National Gallery in Melbourne and there was a big sculpture that said, ‘By Leigh Bowery from Sunshine’,” he says. “I was like, ‘That can’t be the Leigh Bowery from the 80s dance scene.’ It sparked me on a journey to find out about the man.”
Bowery did indeed hail from Sunshine, a suburb of Melbourne with around 10,000 inhabitants. Howitt visited it and spoke to his family, as well as to those in London who had known him. “You have to remember his backstory,” says Howitt. “He only lived in London for 14 years. He sold up shop at 19 or 20 and went straight there and became the icon.” Howitt fed his findings into Sunshine Boy, telling the story of Bowery’s life through dance, spoken word passages, music and, naturally, those showstopping costumes. Howitt’s performance ranges from his childhood to the Taboo years and then to his death from Aids in 1994 at the age of 33.
.Umbilical sausages … Leigh Bowery ‘giving birth’ to his wife. Photograph: James Hill/Rex
As Sunshine Boy suggests, Bowery remains a larger-than-life persona in underground culture, even 24 years after his death. What made him so different from the other 80s club kids? Partly his looks, which still seem strikingly original. As the impresario of Taboo, he wore a different, jaw-dropping outfit every week. There was the shiny PVC mask and matching catsuit, with one larger leg as if in plaster. There was the polka dot suit worn with polka dot face. There were the lightbulbs he’d wear on either side of his face, the coloured drips that would cover his bald head, the merkin he’d place over his genitals. And then there was his wife, Nicola Bateman, worn naked and strapped upside-down to his chest. (Although Bowery described himself as gay, he married his longtime companion and sometime lover Bateman seven months before his death.)
But Bowery’s creativity was not confined to clubs. He worked with the dancer and choreographer Michael Clark, creating costumes and co-starring in his performances. He appeared in the windows of the Anthony d’Offay Gallery, wearing a different outfit each day of the week. He fronted a band, Minty, and – perhaps most famously – modelled nude several times for Freud. On the back of the Freud connection, Bowery hit the mainstream from various directions. He appeared in a commercial for Pepe Jeans and guested on The Clothes Show on BBC One, taking tea in Harrods dressed in a succession of astonishing get-ups to the soundtrack of his hero, drag star Divine.
Bowery also engaged in more conventional creative work. He was an art director on the 1991 video for Massive Attack’s Unfinished Sympathy, a stylist for Rifat Özbek, a costume designer for Culture Club (Boy George would co-write and star in a successful musical about Bowery). His career resists categorisation. Asked what he most deplored in others by the Guardian in 1993, Bowery replied: “The urge to categorise: if you label me, you negate me.” Perhaps Boy George came up with the most accurate description when he described Bowery as “modern art on legs”. He turned himself, his body and his image into an art object, one that walked among us as well as appeared on stages and in the windows of galleries.
“People are always telling me about the time they saw him,” says Sue Tilley, Bowery’s friend and the author of Leigh Bowery: The Life and Times of an Icon. “It was probably only once, but he made such an impact they have never forgotten it.” DJ Princess Julia met Bowery in the early 80s, both part of a crowd that included the artist Cerith Wyn Evans, Boy George, Clark, and Bowery’s friend and frequent co-star Trojan. Julia says Bowery, who started off working at Burger King to make ends meet, quickly became a fixture on the scene: “He was very influential because he was very inventive. He was always coming up with ideas.”
His looks, she says, were often inspired by what was happening in wider society. “The dot face, for example, was a comment on Kaposi’s sarcoma” – the cancer which caused the facial lesions that struck many Aids sufferers in the 80s. “His work was about things like body image or illnesses – and those things haven’t gone away. It confronts you and frightens you and makes you think. It’s very disruptive, to use a word of the moment.”
There is a clear line from Bowery to the performers and punters exploring extreme looks today. Glyn Fussell is the founder of Sink the Pink, a playground for the artistic side of drag culture. He says that while the twentysomethings who come to the London club probably haven’t heard of Bowery, his influence is present. “You see it fashion, you see it in the underground, you see it in mainstream culture, in RuPaul’s Drag Race.”
It is in fashion that Bowery’s influence is most explicit. Rick Owens’ “human backpack” collection in 2015 was a tribute to Bowery carrying Bateman like a papoose. Menswear designer Charles Jeffrey runs a club called Loverboy that stage shows verging on performance art, much like Bowery. And, with his floral gowns and matching face masks, Richard Quinn, the young London designer who had the Queen in attendance at his February show, has clearly been inspired by Bowery.
For Gareth Pugh, Bowery is a consistent reference. The designer first learned about him in Fergus Greer’s 2002 book Leigh Bowery Looks: “If you go into any suburban art college you’ll always find that book in the fashion section.” Bowery is inspirational, he believes, becausehe “ created his own language. That’s the golden fleece for any fashion designer: to find something they can be known for 30 years down the line – and for it to be so iconic.”
Of course, some elements of Bowery’s work haven’t aged so well, driven by his relentless desire to shock. One of his most infamous looks was called “Pakis from Outer Space”, inspired by the Asian communities near where Bowery lived in the East End and involving blue faces, bindis and nose rings. He made blouses out of material bearing swastikas, used rags stolen from Jewish artist Freud’s studio to make an image of Hitler and appeared, naked, in makeup similar to blackface, for a Minty publicity photo.
This preoccupation with the extreme offended plenty of people. Clark stopped working with Bowery when he insisted on wearing a costume with “a cunt” written on it. Minty saw their residency at the Soho club Freedom cut short because of a show that involved Bowery “vomiting” vegetable soup into Bateman’s mouth.
Perhaps Bowery’s work was radical satire, all part of a life lived without taboos. Shocking people – and perhaps waking them up – was the ultimate aim. Speaking about a show at an Aids benefit, in which he had an enema on stage that sprayed the front row, he said: “I was quite pleased with the hostile reaction. If I have to ask, ‘Is this idea too sick?’ I know I am on the right track.”
“The idea,” says Pugh, “of wilfully doing things that get a rise out of people. He had this idea of something that is bereft of control, for good or for bad.”
“I don’t think he was setting out with a racist heart,” says Fussell. “He was challenging the status quo. It was about challenging what he was seeing on the streets and making it hyper-realised.”
Howitt’s 40-minute show will cover Bowery’s triumphs, disasters and premature death. Bowery found out he was HIV positive in 1988 and died six years later, not long before combination therapies greatly prolonged the lives of those with the disease. “A lot of people say that if he had survived another month, he would have been OK,” says Howitt.
Tilley often finds herself wondering what Bowery might have achieved had he lived longer. “He had a lot of irons in the fire, but he died before anything properly happened,” she says. Bowery may, she muses, have gone “down the path of reality television”. After all, she concludes: “He would have been brilliant on Big Brother.”
‘Nothing Was Ever Out of Bounds’: Leigh Bowery’s Friends Remember the Legendary Performance Art Provocateur 25 Years After His Death
Cerith Wyn Evans, Baillie Walsh, and Lou Stoppard reminisce about their late friend.
Artist Cerith Wyn Evans and director Baillie Walsh met Leigh Bowery on the London club scene. To both, he became a collaborator and a close friend—a subject to film, a designer to call on for incredible garments, an artist to admire, a conspirator to talk with for endless hours on the phone. Sometimes he helped them, sometimes they helped him. Always, they recall, he pushed them—not necessarily forward, that would be too expected, but in a new, uncertain direction that was wide, warped, strange, sweeping, and beyond anything they’d planned. Walsh’s collaborations with Bowery include the music video to accompany Boy George’s 1991 song “Generations of Love,” Massive Attack’s “Unfinished Symphony” video from 1991, as well as “Unstitched” from 1990, which shows Bowery having his cheeks pierced and was regularly screened as a backdrop to Bowery’s performances. Wyn Evans’s works with Bowery include the early filmsEpiphany, from 1984, andDegrees of Blindness, from 1988. Here, they reflect on their late friend with Lou Stoppard.
Cerith Wyn Evans: Baillie, do you remember he had a tattoo on his inner lip that read “mum?” It was facing inwards so that only his teeth or throat would read “mum.” I told him, If he pulled his lip down, to everyone else it read “wuw.” He said, “Yer – wooo!”
Baillie Walsh: I’ve never talked about Leigh before. It was all too close at the time.
CWE: For a while, it felt like there was a load of people who wanted a bit of it all. When someone died and there was too much attention or discussion, Leigh used to say, “Oh, they just want another slice of death pie, so they can look like they have been a part of something.” And knowing what we do know, that he was living and dealing with HIV, those comments mean more.
BW: My relationship with Leigh was private, special, and personal. I didn’t want it to be public property. But now, 20 years have passed—longer, 23 years—I don’t get the same feeling. It’s nice to see how much I remember, together with Cerith, we can see if we can wheedle out some memories—and some laughs hopefully as Leigh was a-laugh-a-minute. I would like to remember more. What I loved about him was how he’d just turned everything on its head. He made you think in a different way. The idea of “fitting in” was abhorrent to him. I want to remember that. I often try to think in the way that Leigh pushed me to, and it’s nice to have a refresher course.
Lou Stoppard: One thing written a lot about Leigh Bowery is that his whole life was a performance, a work of art. Would you agree with that, having known him more intimately?
CWE: Well, it’s yes and no. I always thought he was much more extreme in mufti, or daywear, than he was in the outfits that he wore at night.
BW: That was much more disturbing, I agree. He looked like a child molester.
CWE: There was a vulnerable side to him, which you saw if you were a close friend. He tended to keep his friends apart; he didn’t like the idea of us talking about him. We had to be kept compartmentalized.
BW: He did love to cause trouble. He loved making stories up. He loved to lie. He would tell you someone had died. He once told me that Brad Branson was dead—he is now dead, so I can tell this story. He told me he was dead because Brad had slept with my boyfriend, John Maybury, so he thought I’d like to hear that. He told it to everybody.
CWE: He absolutely adored lying. I remember him telling me a story about Les Child, who was a dancer with the Michael Clark Company, how he was going through hard times—the company had got dissolved, or was on a break, or something like that. He said, “Oh poor Les. He’s making sandwiches in a gay sauna in Soho.” And I said, “Oh you bitch.” I was laughing. It was obviously a total lie. But then two months later, I ran into Les in the street who said, “I’ve taken to making sandwiches in a gay sauna in Soho. I’ll spring back.” It was true! So you never knew.
BW: Leigh loved to muddy the waters. You never knew what was true and what wasn’t.
LS: Can you both recall when you first met him?
BW: I can remember my first vision of Leigh. It was him and Trojan in Heaven nightclub in the “Pakis from Outer Space” blue look. Apart from the look, they seemed very shy and almost demure. It wasn’t an immediate friendship. It took time. Really, I got to know Leigh properly because I started working with him. I took him to Italy to be in a fashion show—and it was that thing of going away with people and becoming friends, him, Big Sue. He made papier-mâché head masks of himself with the drip look he used to do. So, he had 30 models come out as him. It was for a company called Calugi e Giannelli—really tacky, but we’d do anything for a fee in those days, and it meant going away with a crowd. It was over times like that that I got to know him as him.
CWE: I met him around the same time at The Bell, a gay club in King’s Cross. We used to go on a Sunday night. I nearly fell over because Leigh and Trojan walked in, and Trojan was dressed as Sheba with really intense turquoise hands and face. That look—”Pakis from Outer Space”—was like Leigh’s collection at the time. I was a student at the Royal College, it would have been around 1983. I thought: “I’ve got to do something with these people, I wonder if they’ll be in a film.” I went up to them: “Oh hello, I’m a film student at the Royal College, would you ever consider making a film?” They said, “Yes all right then. We’re going to be in a film!” Leigh really took it seriously. Suitcases would arrive with makeup. Consummate professionals, from the word “go.” And they would do anything. The film was Epiphany. We shot the whole thing on tape on huge machines that had been given by the BBC to the Royal College. You had reels of two-inch video tape—the quality was insane. But these cameras were huge and so heavy, big pneumatic things with enormous cables that would almost move around on their own. We had three cameras on Leigh at all times. He said, “Which camera should I look at? The one with the red light?” And I said, “The red light is going to be on all of them; we’re recording everything, no takes.” He just loved that atmosphere—constantly being watched, reinventing himself, and rethinking his position. You know when you see the cliché of a model or David Hemmings pretending to be David Bailey—Give me this! Give me that!Leigh was like that. Going from look to look, posing and moving. It was just heavenly to witness. It was raw. There was a levity to it. But also, there was a sense of stagecraft and something studied—it was deeply sincere, however much of a laugh it was. The pain he went through and the discomfort to get the looks. It was an exuberant celebration on so many levels.
BW: He never thought he had a look unless it was painful. If it was painful, it meant he was taking it further than anyone else would. One night, we went to Heaven when he was doing the “Mexican mask” look and wanted his profile to be as flat as possible so you didn’t get any nose. I had to take him out because he had a complete panic attack, which you rarely saw with Leigh. He was in proper, incredible pain. You couldn’t unzip the mask because it was so tight. His voice was muffled, and his face was squashed: “Get me out of this!” I took him and Nicola Bateman back to my flat, and I got pliers and scissors to try to undo the zip. I couldn’t get them into it because it was so tight against the skin. Somehow in the end, he got out of it.
CWE: There would be bruises. He would be cut to shreds after a night out.
BW: Each time he went out, he wanted to push it further, getting more and more ambitious. There were some looks he would test out and never do again. He would always gauge the response. If he was just laughed at then that was a disaster. There had to be something more thought-provoking than that. It had to be challenging.
LS: What did he want people to feel? Disgusted? Scared?
BW: Both of those things. He liked laughter too—but not just laughter.
CWE: He was physically so very strong, and often he’d be on insanely high shoes. He was so massive. One of the things he liked doing at Taboo was kicking the ceiling lights out—bang! Glass in everyone’s drinks.
BW: His behavior at times was so extreme. He would pogo around the dance floor—he was such a large being, so it was really intimidating, especially as he was dressed in such a way, with the merkin on and something covering his face. But it was never aggression in a typical sense.
BW: No, I don’t think I ever saw Leigh angry.
LS: Was he a private person in some ways? Is that part of the reason he performed so much with his own identity, in order to keep certain things hidden?
BW: Well he kept his HIV status from me.
CWE: Me too.
BW: That was obviously very private. But I never felt that Leigh kept secrets much from me, which was why I was so surprised when I did find out that he was HIV positive. That was such a massive thing, especially at that time, because there was nothing you could do.
CWE: Fear and paranoia was everywhere.
BW: We were all watching hundreds of people die around us. When you watched someone die, you were not only very sad you were also terrified—Is that going to be me next? I think Leigh felt that very strongly. I think Leigh didn’t want to be labelled as someone with AIDS. Leigh was much more important, much more than that. And I think that if he had announced that, and if it had gone out into the world, he wouldn’t have been given the freedom to be other than that.
CWE: You look back and think: “Why didn’t I see it?” It was so obvious. We formed a band for a while, me, Leigh and Angus Cook, who was my boyfriend at the time. We didn’t play any music. We were called Magpie Shmagpie. Sue Tilley took the press photographs, which we did on the stairs of the sexual health clinic on Dean Street: all of us coming out of the door, posing with jackets on our shoulders—Leigh’s idea, obviously.
BW: He would talk about it hypothetically: “What if? What am I going to do if I’ve got AIDS?” But everyone was saying the same thing. We lived in fear.
CWE: I remember him on his deathbed saying: “I didn’t even bloody lose any weight.”
LS: I’ve heard he started rumors when he knew he was dying that he was going off to live in a different country.
CWE: He’d say he was going to Papua New Guinea to research anthropological tribe masks. After he died, we went to Patisserie Valerie and spent about 200 quid on cream cakes and had champagne. Sue Tilley said no one was allowed to cry.
LS: I wonder what he would do if he was alive now. Because to play with your identity is easier now than ever, with all these different platforms.
CWE: So many years have passed—it’s a different world. The implications of what Leigh started off doing, and his ways of communicating about things, have become so mainstream, in a way.
BW: Leigh would have morphed into something else. There were so many different stages he went through during my friendship with him: he started in the clubs with no idea of entering the art world; he wasn’t creating art; he was creating attention for himself. Then that ambition changed when he got the gig with Anthony d’Offay gallery, and then later he met Lucian Freud through you, Cerith.
CWE: We sort of thought, “Oh it’ll be fun to mess things up for Lucian—we’ll introduce you to Leigh and then you’ll have to paint sequins!”
BW: I feel that Lucian’s work did change after he met Leigh. Part of Leigh’s thrill was always challenging his friends, and of course he did that to Lucian. I think you can see Leigh’s influence in those pictures.
CWE: Absolutely you can. Lucian was hugely affected by Leigh’s death. He was so so close to him, he really looked up to him.
BW: I love the fact that Lucian still looked up to him even after they found a stolen picture of his in Leigh’s flat. Leigh was stealing 50 pound notes every day when he went in there.
CWE: Lucian would think that that was just wonderful. He would think it was the most noble thing to do!
BW: They deserved each other. These two really strange characters coming together—it was a match made in heaven.
LS: Baillie, talk to me about working with Leigh on your films.
BW: My favorite project was the “Generations of Love” video with everyone in the street. Leigh just loved being a hooker on the street.
CWE: With the blonde wig and the “Come to Bed” t-shirt.
BW: Leigh was the one who got me thinking: “Oh, it’s a pop video, but I can make a porn video.” It was Leigh’s influence on me that kind of pushed me the whole time. He was a great doer, always with massive enthusiasm. It was a great collaboration. We just did it. He loved getting everyone in character and in dress. He’d be pushing Sue: “Get your tits out!” He got everyone—Rachel Auburn, Les Child, Michael Costiff, Talulah—in their costumes and their appropriate looks. Les Child fought every step of the way because Leigh was trying to cover his face in Vaseline. I would say that that was our most successful collaboration. His influence pushed me to a place that I thought was really interesting for a pop video.
CWE: That video is sort of sad also in a funny way. It’s mournful. There’s a melancholy at the heart of it, this idea of generations of love.
BW: I think the last project we did together was the Massive Attack video. That shoot was the first and only argument I ever had with him, and I don’t think he ever really forgave me. He’d made a dress for Shara Nelson, and we needed to find some way to cover up the earpiece that we needed her to wear. The collar wasn’t high enough, so he suggested a wig. She looked ghastly in, but of course Leigh loved it because it was so wrong. It got very awkward in front of the band. Leigh was determined, and I had to finally put my foot down. Leigh never really wanted to be told what to do. We were never quite the same after that trip to LA. Before that, we’d been two hours on the phone to each other everyday for seven years. But then also our lives were changing. Leigh was working with Lucian—his interests were changing. Our common interests were drifting.
CWE: He’d never do what he was asked to. At that time, I did some pop videos for The Fall. And we also did a play together at Riverside Studios where he played a Chicago mafia boss. Leigh would improvise lines, and every night he would stretch his lines by quite a few minutes by writing some “new material.” I can remember him coming on doing dances or singing songs, and then going into his lines. Mark E Smith would be grumbling and laughing. One thing that has always stuck with me and has been a barometer for me ever since: Leigh would look at something and say, “Yer, it was all right. But where’s the poison?”
Almost like a kind of homeopathic thing; you would need this poisonous kernel, so that it could be transformative, something in it that was deeply subversive and could dissolve hierarchies.
BW: Exactly. As much as he did work for me, I also did a lot of work for him. He would engage you as the magician’s helper. One of my strongest memories of him is when he did the AIDS benefit at the Fridge. It was his first ‘douche’ show. He comes out dancing with a corset and a merkin. I think it was to ‘Nothing Compares to You’. He’d rehearsed it so he’d lie back on a plinth, open his legs, and squirt a fountain of water from his arse. But he hadn’t rehearsed it with a corset. So, when the time came, he couldn’t lean back. So he goes to the front of the stage and bends over to squirt over the white table cloths. Of course, he was very nervous so the water wasn’t completely clean. He’s squirting shit all over the front row of an AIDS benefit. For the second part of the piece, he put a great big skirt on that I had to get under (as I was the back of the horse, if you will). I’m meant to get him onto my shoulders so he could be ten feet tall waving in this giant skirt. I get under and it’s covered in shit, slipping around everywhere. But it’s show business—not a choice! He was properly freaked out after that show; he knew that he had pushed the poison to the limit as people were horrified. And it did cause a scandal. He’d shat on the front tables at an AIDS benefit! That was Leigh when he really did think for a minute that he’d pushed it too far. There was fear—and it was rare that you saw Leigh with fear.
CWE: If you did that now, you’d probably go to prison. Anything that was inappropriate—Leigh was like a magnet. Everything inappropriate was good. Everything appropriate was bad. It was pretty clear cut. He was really an anarchist.
BW: That’s why John Waters’s films so influenced Leigh. Divine in Female Trouble was a benchmark for Leigh in so many ways.
LS: Was it ever tiring being friends with someone who was that unrelenting in their commitment to subversion?
CWE: No. Because he was also so sweet and gentle. Like Baillie described—I was one of the people on the other end of the phone for an hour or two a day. We’d sit there watching television and he’d be like—What is Lorraine Kelly wearing?
LS: Did you ever feel embarrassed by him?
CWE: I can remember being on holiday in Cornwall with Leigh. Sue Tilley drove Leigh down; she couldn’t get into the car because Leigh had made a frock to wear in pink dayglo. It was like a Molly Goddard dress but the size of a flat—with all this tulle bunched into the car, the entire car was full. As soon as he arrived, he ran into the sea, and it soaked up so much seawater he nearly drowned. It was completely hysterical. I can remember this one dreadful situation: Leigh would do anything to embarrass Sue in public—it was one of his absolutely favorite things to do. So, we were alone in this grand Catholic church. And this lone nun was walking towards us in her habit. Sue was going, “Leigh, no. No. No.” Sue—she’s a big girl—and she’s trying to hide behind the column in the church. And Leigh is going at this 90-year-old woman in her habit, “Oi! My friend wants to eat you out!” The nun just shuffled away. “Bless you my child.” The strange thing is it never wore you out. He was like quicksilver, also. In the next moment, it would be a completely different thing—he’d be helping you make a pea soup. He thought it was hilarious that you had to buy a huge sack of peas to make a small bowl of pea soup.
BW: I was never embarrassed by Leigh because Leigh was never embarrassed. The joke was never on Leigh; he was making the joke, so there was never painful embarrassment.
CWE: But there would be times when he would be vulnerable. He’d open up on the phone and say, “Oh, I don’t know what I’m doing.” He wasn’t always high octane.
BW: Leigh really led a life on the telephone. Cerith was part of that. I was part of that. Sue was part of that. A lot of our lives were spent on the phone—hours and hours a day. That’s not high octane or a performance. That’s a proper relationship.
CWE: You’d talk about things in the news…
BW: …or sometimes there was just silence. And you’d hear a sewing machine going.
LS: The construction of his garments was incredible. People often talk about how great he was at making looks, but perhaps not enough focus is put on just how skilled he was at making clothes.
CWE: He was very fastidious about the idea of learning techniques. He really looked up to Mr. Pearl, who had this career in Paris making amazing corsets. Berwick Street market was an Aladdin’s cave, where you could get the sequin fabrics and needles and threads—he would refer to that as the Stitch Bitch Trail.
LS: He’s often remembered in terms of the Club Kids. What do you make of that?
CWE: I don’t think he actually liked the whole New York Club Kids thing. He went there, he was adored there. But the people that he really liked were the ones from Jackie 60 and Mother and Blacklips Performance Cult. He liked the drag queens who were politicized.
BW: He liked the ones who were incredibly smart. He loved intelligence.
CWE: He liked revolutionary people. Political people.
BW: The Club Kids thing was an early part of his history, but his ambitions moved way beyond that. Leigh, above everything else, was incredibly intelligent, a thing that shines through for me. He had many stages. He created this persona from nowhere. And he trod unknown ground and was still reinventing every day.
CWE: And he was constantly looking for ways to undermine his reputation for what he’d become known as.
LS: Are there any particular days with him that stand out?
BW: It was his birthday, and I really wanted to fuck him over. So I thought: “I’m going to get him a cat. It’s a wicked present to give someone.” I called all the pet shops, and there was a kitten in Camden Town. So I went to the pet shop, and it had sold! I thought: “Fuck it, I’ve failed.” And as I was walking down to St Martin’s Lane through Cecil Court, there was a homeless person with a cat, saying: “Do you want a cat?” I was so shocked I said, “No,” and walked up the street. But then I thought: “Of course you fucking do.” So, I went back and bought the cat, a fully-grown black cat. It was so extraordinary and immediately friendly and affectionate. I went home and put it in a stereo box, wrapped it up and went over to Leigh’s flat. Leigh unwrapped it, saw the box and thought that I had bought him a stereo. He was saying, “Oh that’s great.” Then he opened it, and the cat jumped out. He was completely horrified at first. But then he was a great father to the cat. Leigh adored Angus.
CWE: He named him Angus, which was the name of my boyfriend at the time. He did it to punish him.
BW: The cat was always sleeping in amongst fabric.
CWE: The flat was pretty amazing. Before Trojan died, it had Star Trek wallpaper. And after he died, Leigh decided that he wanted to change it. And as he was peeling off the wallpaper, he found one of Trojan’s hairs, from when Trojan and Leigh had put up the wallpaper. Leigh said he freaked out and didn’t know what to do. “I just ate it,” he said. He just had to ingest it.
LS: Tell me about his wedding; he married Nicola Bateman.
CWE:That was quite late on. I was his best man.
BW: The wedding was one of the secrets that I didn’t know about. Cerith was privy to that. But that was another of those “What else didn’t I know?” moments.
CWE: Leigh was in Minty [his band] at that time. He was also very scared at that point, and I imagine was probably showing symptoms of HIV/AIDS. He got married so that if the worst happened, at least Nicola would have a roof over her head. He was in a furious mood all day. He had this blond wig on and a coat that he’d bought on Brick Lane that was very nice, black, heavy, silk satin—an Orthodox Jewish man’s coat. Nicola just kept saying things like, “Oh darling, this is the happiest day of any woman’s life.” She was dressed in blue and had a blue garter—everything was her “something blue.” She’d really gone for things as if it was the Royal Wedding. Her sister was the bridesmaid and was dressed in a bizarre 1960s pop-art Paco Rabanne dress; her hair was big and bouffant and had black and white make up, mod shoes and big Perspex earrings. After the wedding, Leigh said he had to go to a Minty rehearsal: “Nicola you have the money, make sure that you spend it all on a wedding breakfast.” We went to the Angus Steak House on Leicester Square, the three of us there looking like complete freaks. We had steak and chips and a salad. After, Nicola’s sister and I went to a party at the Architectural Association, where I was teaching at the time—I actually got Leigh in to teach there too—and she won a prize for best fancy dress.
BW: How long before he died did they have the wedding?
CWE: A couple of months. It was the summer, I think, and he died in winter.
BW: On New Year’s. So very Leigh to ruin New Year’s. So sick, because every New Year’s you think of Leigh.
LS: Tell me about getting him in to teach at the Architectural Association.
CWE: I was teaching a foundation course, which I’d got into because someone had asked me to come show my films and give a talk to some students. I’d asked to see the students’ work and ended up doing these tutorials and got on well with the students. Someone was having a baby and went on maternity leave—so all of sudden I was running the foundation department at the Architectural Association, despite having never studied architecture and actually being rather suspicious of architects. I ended up teaching there for seven years. I’d try and get them to look at things around buildings: dance, fashion, the body, do plans for zoning in department stores, or map Selfridges on top of the British museum so the Assyrian department would be in the same place as the shoe department—stuff like that. It was about opening people’s minds up, to stop them just thinking about making fabulous houses on golf courses in the Mediterranean. I thought Leigh would be perfect to come in, do it for a term and see how it went. I had a bit of a budget, so we hired ten sewing machines. He suggested we have to make a pair of gloves, as that was really, really difficult. So, we did a glove making workshop—every student had to make a pair to fit their own hand, and Leigh was there to help. The students were just over the moon—they loved him. On his first day, he had been so nervous. I remember he had on this pair of trousers that Jean Paul Gaultier had given him. They were green stretch satin, the weirdest thing. They had obviously worn out so many on the bottom that they had the overlocked stitching to hold them together, over and over and over again to keep the whole thing together. I can remember looking at him; he was covered in makeup—very, very heavy foundation.
BW: It would be orange.
CWE: And lots of rouging on the cheeks. Sometimes he’d wear one of his chemotherapy wigs, which he would have gotten from a charity shop and then cut so you could see all the netting on the scalp. But he was so tall. I thought: ‘You’re huge today, four inches taller than normal.’ I couldn’t work it out. He lifted the trousers up. And inside his trainers was a pair of trannie stilettos.
BW: He loved height. He wanted to be the biggest man in the room.
CWE: He was so nervous though.
BW: But the nervousness was endearing, wasn’t it?
CWE: Absolutely. By the end of the day he knew the names of their brothers and sisters, where they came from, all of that. He’d see them two months later and be like, “So, is Mathilda still doing the veterinary college thing?”
BW: There was always a boy he really fancied.
CWE: One time, Pearl came in, and we showed them a VHS cassette of a Christian Lacroix couture show. The students had never seen a fashion show. Pearl was there whispering away about couture and handcraft with his 16-inch waist. Leigh thought the show was genius and flawless. All the students were really getting into it. So, the project developed so that at the end of Leigh’s term we were going to do a fashion show, where the models were going to be the students and they were going to make outfits, couture outfits, based on a building. A very bright boy from Bulgaria chose a Bruce Goff strange kind of desert range house from the early 1960s. There was a very privileged Iranian woman who didn’t have a portfolio and would use a brand-new giant Chanel shopping bag to carry her work. Leigh was of course like, ‘She’s a genius; she’s incredible.’ She decided that for the fashion show, she wanted to come as the Taj Mahal. So Leigh helped her make a papier-mâché dome helmet, which she decided she was going to cover in fusilli pasta, glued on and sprayed silver. Now, the Taj Mahal has a lake down the front of it, so she got some Perspex manufacturer to make these two narrow strips which went down the front with blue colored water inside and model trees glued down the side. The fashion show was very well attended—Vivienne Westwood, Rifat Özbek, Jasper Conran, and people fromVoguecame. Leigh was the compere. And for that role, he decided to sport his head coming out of a toilet bowl with brown latex filled with rice krispies all down his front—like a brown shitty head coming out of a toilet—with a see-through corset, a huge skirt and black eye makeup. He had a clipboard with notes about each student and spoke in a voice as if it was a couture show: “And the next model that we have is…” I remember in one bit he said, “Dana has come at the Taj Ma Hole, oh sorry Mahal.” People were roaring with laughter. It was off-the-charts mental what people were wearing, but the students were genuinely moved.
LS: The breadth of the things you both worked with him on is quite something: films, teaching, performances.
CWE: Well, he was a very creative person, so nothing was ever out of bounds.
BW: It’s been lovely reminiscing and remembering. The tragedy is that he’s not here, because he would be pushing boundaries like no one else I’ve ever known and making me, certainly, and probably everyone else question everything.
Four things you never knew about Leigh Bowery
The club scene icon’s best friend Sue Tilley shares some little-told stories from her life with the founderof Taboo
Dressed in looks dripping in colour, with overdrawn lips and exaggerated silhouettes distorting his form beyond recognition,Leigh Bowery is the Christian boy who became an icon of club-kid history, inspiring everyone fromAlexander McQueen (who once went to see his band Minty before their Soho residency was shut down for obscenity) toGareth Pugh. More than 20 years after his death, Bowery’s long-term best friend, biographer and party companion Sue Tilley, was joined by a group of enthusiasts at the Café Royal this week for a talk as part of A Curious Invitation’sIcons of Fashionseries, to tell his story from a more intimate perspectiv, from exploits in London to checking into the hospital under the name John Waters and watching his bands Minty and Raw Sewage (once named the Quality Street Rappers). Here are four things we learned about the icon.
HIS DIY DESIGNS HAVE ENDED UP IN THE LOUIS VUITTON ARCHIVES
“His goal was to be afashion designer,” explained Tilley. “But he wouldn’t really fit in. He wrote in his diary in 1981: ‘Fashion, where all girls have clear skin, blue eyes, blonde-blown wavy hair and a size 10 figure, and all the men have clear skin, moustaches, short waved blonde hair and masculine physical appearance, STINKS.” For the most part, Bowery decided to use his own body as a canvas for self-expression, but he did make clothes for a few friends and Boy George (who was a big fan). According to Tilley, “Boy George was terrified of him and was thrilled that Leigh Bowery was making clothes for him – he was obsessed to the point of writing musicals about him and everything!” Now many of the creations Sue received are in the hands of Louis Vuitton menswear designer Kim Jones, also a big Bowery fan. “He buys his clothes off me or I swap them for Louis Vuitton bags,” chuckled Tilley, “because to be honest, he’ll look after them a hundred times better than me, put it in the vaults at Louis Vuitton, and I’d rather that than having them in a box getting tatty.”
“Fashion, where all girls have clear skin, blue eyes, blonde-blown wavy hair and a size 10 figure… STINKS” – Leigh Bowery
HE FELT THE TIME WAS RIGHT FOR TABOO TO END
Taboo, Bowery’s iconic club night founded in January 1985, served as a meeting point for all types of people inspired by freedom of expression and absolute disregard for the traditional. The club staged its last hurrah in 1986, after asserting itself as the pinnacle of London nightlife. Tilley explained the story behind its closure. “Someone sold a big story to the papers about it being a den of vice and drugs. I never saw drugs or people on heroin or whatever, but perhaps I wasn’t looking in the right place. So this was the story, and the club had no choice but to shut it down.” But Bowery believed the time was right. “He then realised it was actually a good thing – it’s much better when something is shut down at its pinnacle when it’s still really good than when it’s died down and there’s three people from the suburbs in there. And then they asked him if he wanted to open it again and he went, “No. It’s best that it stopped when it did.”
HIS BODY PERFORMANCE ART HAD ACCIDENTAL BEGINNINGS
Although Bowery is perhaps best known for birthing his friend and wife Nicola Bateman, who came out of the performer’s ‘vagina’ with sausages for an umbilical cord, his first venture into the performing arts didn’t quite go as planned. “His first performance was at a crypt in a church that was run by the neo-naturists, a bunch of people who just walked around half-naked, the most famous one probably beingGrayson Perry,” Tilley remembered. “Everyone was standing round. He went round and stripped off naked, and in the process he caught his nipple that he’d just had pierced. It started bleeding and there was blood pouring down his chest… So he put on a doctor’s coat and pretended to inject (co-performer) Trojan with various syringes, Trojan then threw lighter fuel to the floor and set fire to it, while Leigh pissed into a glass, then Trojan drank half the piss and used the rest to douse the flames. I don’t think he’d be allowed to do that nowadays because of health and safety – but everything went then. Things got a little more professional after this, but bodily fluids still played a big part in Leigh’s repertoire.”
“Leigh pissed into a glass, then Trojan drank half the piss and used the rest to douse the flames. I don’t think he’d be allowed to do that nowadays because of health and safety” – Sue Tilley
Many unfamiliar with the 80s club kids will know Bowery as one of artistLucian Freud’s sitters. The 1990 portrait Freud painted of him, “Leigh Bowery (seated)”, was hailed by many as a masterpiece. Tilley, who also sat for the artist, explained how the two met during one of Bowery’s performances in a room with a two-way mirror. “Leigh dressed in a different outfit everyday, and he’d walk around this space like a sort of caged animal – he was very gymnastic as well, so he did a lot of high kicks and spinning on the floor. And there were musical traffic sounds and different smells coming. People used to come to the gallery for two hours – some of them were there every day to watch him. That was proper validation, because it was ‘proper art’ and it was accepted. One member of the crowd that came to see him was an old artist called Lucian Freud – because some of our friends worked for Lucian Freud they had mentioned Leigh, and he was curious and wanted to see what he was like, since he had a lot of interest in the world. He came along and was absolutely thrilled by him – especially by his calves. He said “It’s amazing! His calves go straight into his feet!” so he decided he wanted to paint him. This was a real turning point for Leigh.”
Picture it; “Coastal Twist” Fair Day, Umina Beach, October 2019. This was one of a number of inaugural events for a yearly festival for the gay/LGBT/queer community on the Central Coast of NSW. I attended this friendly-feeling event with my housemate (an ex), and my most current ex. We have all moved out of the big city, and into the peace and quiet of life in this area almost 4 years ago. The gay community in this rather large area of NSW is there, but not blatantly obvious and “out there” ￼like it is in the city. It is not easy to meet other gay people here, and the apps only really offer sex, not friendships. One would hope that events like this could change that scenario, but…
So, we are standing in the allocated area for alcohol, having a beer. This guy appears and greets my housemate, who knows him, and his partner, from earlier days in Darlinghurst, where they ran a restaurant. They have also dropped my housemate home from Woy Woy station on several occasions, on their way home to Umina Beach. In other words, they only live a very short distance away. My housemate has always made a point of telling me what a lovely couple they are.
Anyway…we are chatting to the one who appeared, obviously an extrovert. Really nice guy, very friendly, very chatty, and not a scatter brain. I automatically took to him, and the four of us were happily chatting away about life on the coast when his partner made an appearance. Despite my housemate insisting I knew them – he does this a lot…like I knew every single gay man in Sydney – but I certainly don’t remember them, so introductions all around. The partner stood next to me, and quite obviously wasn’t interested in getting involved in the conversation going on, which made me feel quite uncomfortable. He hung around for a couple of minutes, disappeared, returned a short time later, then disappeared again. Meanwhile, I found the one we were chatting to quite affable, and thought…nice guy to get to know. Finding out that he was also on a disability pension, and free during the day had me thinking about occasional coffees or lunches to break the home monotony. Towards the end of the chat, he mentioned they were having a barbecue the next day for some friends, and would we all like to come. Thinking this was a great opportunity to get to know and socialise with some other local gays, we said yes, and in return invited them to our annual home Christmas bash at the start of December. It did cross my mind that with the partner being less friendly and sociable, there could be a problem!
As it turned out…I was right. Got up the next day quite looking forward to meeting up again, only to be told by the housemate that he had received a message from the affable partner, saying the unfriendly partner was not feeling well, and the barbecue had been cancelled. We both exchanged a look that said…we know what’s happened there. Not a word since. It has been made pretty obvious – at least from one of the two – that we are supposed to ignore each other, despite a shared sexuality, and close proximity. Needless to say, I was very disappointed! It’s almost like being back on the scene in the city, where attitude reigns supreme!
I have heard from a number of Melbourne gay guys that Sydney gays are hard to get friendly with because of their attitude…and having lived in Melbourne, I tend to agree. What is it about Sydney men that makes them think they are better than anyone else! It was difficult enough when negotiating the scene in the 80s & 90s. There is a stand-offishness with Sydney guys, an attitude that makes approaching them difficult, and awkward. I always found picking guys up in Melbourne a lot easier than picking them up,in Sydney. It’s not that I lacked a sex life in Sydney, more that you had to work harder for it, and if guys weren’t interested, they were often quite rude about it. Everyone hung around in their cliquey groups – including me – and because the group was always there, in the pubs and bars, it was difficult to meet an individual. Going to a pub or bar on your own often meant that was how you remained for the night – single and alone. It was likewise within the scenes sub-groups, such as leather guys, bears, muscle Mary’s and so on. It seemed to be a like-for-like situation, and if you didn’t fit you were left on the outer. Despite sly looks, and eye meetings, attitude more often than not got in the way. Big parties like Mardi Gras and Sleaze became, after the late 80s, just about the gym bunnies dancing…off their faces…with other gym bunnies, and if you didn’t fit the mould then…too bad. I did wonder on occasion if these Peter Pans had any sex life at all, or did they just pose and flex as a substitute! It got really bad. Attitude ruled!
I remember only too well my run-in with AIDS in 1996. It was a very distressing and traumatic experience, and one I wasn’t expected to survive. However, it was a time of big advances in HIV medications, and I got through it against the odds. After 18 months of getting my mental and physical health back together, I thought it was time to make a move back onto the scene, and start having sex again. It had been a long drought. And in that interim period, even more friends had died, and it became very obvious that I knew very few people in Sydney at that time. I think my first night back out in a pub I had always been familiar with was…scary and alienating! I knew…nobody! And found myself standing on my own all night while these groups of people socialised around me. As always, guys looked, but no one approached. I recollect feeling very distressed about it. Not being someone who did beats, saunas or backrooms, I wondered if I was ever going to have sex again. It made me very aware of the devastation that wiped out most of my social circle, and despite me hoping that HIV/AIDS would bring us,…as individuals who existed within a sub-cultural community…closer together, that instead attitude had won out, and if you were on your own within the ghetto, you were likely to remain so. It gave me empathy for those who, in the days prior to my brush with death, I had observed wandering through the scene largely ignored.
I did eventually have sex, though it came with the knowledge…at least on one occasion…that people on the scene who were on the outskirts of HIV had no concept of what I was recovering from. I wanted a slow transition back into anal sex, but the attitude was…well…why! You’re gay…you should be ready and willing to do this HIS way! That didn’t work for me…though my second encounter was a lot more reciprocal and inventive. I fortunately ran into a friend when out one Friday night, who I hadn’t had contact details ,for, and thanks to him I then had someone to go out with. Shortly after that, I ended up in a relationship for the next 16 years. Through him, I ended up circulating in his social circle, so until we moved to Brisbane, our social life was quite good. Yeah…Brisbane…
I admit to being a bit of an introvert, but not to the point where I don’t socialise or enjoy the company of other people. My partner was my opposite – he was a true extrovert, and as often happens, the opposites that we were worked. However, Brisbane defeated both of us. What is it about capital cities that make gay men develop attitude – that ability to look down their noses at other gay men, to be stand-offish, or just talk through you. There was a lot of that in Brisbane, and in the almost 4 years we lived there, we had no friends on the local scene. It was like an unbreachable barrier. In early 2014, we mutually called an end to our relationship. The next lesson in gay attitude was about to come to a head. This branch of attitude was called…social media!
I love how we give names to things that aren’t what the name implies. I first started using Facebook around 2012. There wasn’t a lot of use back then, but I then discovered that a lot of people I knew from the scene in the 80s & 90s…and assumed many were dead as they had disappeared from the scene…were actually on FB, and much to my delight I reconnected with them. Now, this is the “social” part of social media that I enjoyed then, and continue enjoying even now! I have to say that of my 150-odd “friends” on there, in reality my friend list could be reduced to about 40, as they are the only ones who respond to, and comment on, posts and status updates. As for the rest of them…I don’t know why they bothered sending a friend request in the first place! In many (most?) cases, it is a matter of commenting on friends posts, and somebody from their list checking out your profile (picture, mainly), and thinking they’d send you a request.
I used to look at the friends requests, see how many mutual friends we had, and either accepted or declined from there. However, even that method of “friends in common” hasn’t proved successful, and I’ve ended up with a friends list of mainly people who may as well not exist at all, as they neither like, nor comment on, any of the activity coming from my profile…except for the serial pests! Yep…those guys who send friends requests for no other reason than to try to hook up through FB Messenger. They seem to think because you are friends with so-and-so, you are automatically available for some dirty talk or otherwise. As soon as I accept a friends request, and seconds later a Messenger pings with a “Hi handsome” or “Hi sexy” message I think…here we go! I know it appears rude, but these days I ignore them. Back in earlier days, when it really annoyed me that they didn’t want to know anything more about me than the size of my cock, I used to bore them with long tirades about myself to see if they’d stick it out! They rarely did! In my defence, I’m not adverse to some dirty talk (as several can attest)…but I like a stranger to get to know at least a little bit about me first!
Which brings us to the modern curse of self-censorship. These days, everyone seems to be so easily offended…though I do wonder if a lot of it isn’t being offended for the sake of being offended. As I’ve stated, I know most of my friends list, but there are those in there I don’t!’t know (friends of friends) so I always have to think before reposting something…is this going to offend anyone, even if it’s a tongue-in-cheek meme.
Instagram has become, in many respects, a narcissist heaven. Every person…gay and straight…who goes to a gym has to put up daily photos with shirts off, and undies on…just! Men love to show off their cocks/cock bulges and it has become so prolific that it borders on being a yawnfest now, and it’s noticeable that none of them are unattractive. Conversations of any description are light on too…though I do check regularly to see what reactions the posts generate. ❤️😍🔥🍆💦 are all most admirers have to say!
Of course, the next step from social media were the sex apps! Fuck me…can we talk a whole new dimension to hollow, and shallow! Now we can REALLY talk attitude…and how! My experiences in my short 12-month sprint on these apps could fill a book! And virtually none of it positive! The only way I have ever been able to describe my experiences there are as…demeaning, humiliating and frustrating! It seems to be the one medium where users can be totally rude, ignorant pigs…and get away with it!
At the height of my sex app/web usage, I was logging onto Gaydar, Scruff, Grindr, Manhunt, and BBRT. It’s like a drug addiction! You’d find yourself logging on over breakfast just to see what humiliation was in store for you that day. Of all the dozens of men I had contact with over 12 months, my total scoring sex encounters amounted to…5. Of those…1 was satisfactory. Thankfully, there were no second dates. So, here are some of my ￼(true) encounters on the apps. Take into account that I discovered early not to give your true age…but I only knocked 5 years off…I was upfront about being HIV+, (and had an undetectable viral load for many, many years), and that I was severely vision-impaired, and as a result of this, I didn’t have a car. No names mentioned to protect the guilty;
The guy who had hot tatts, and messaged me, whenever I was online on Saturday night, that he would drop in TONIGHT. He never made one appearance…but I would say that due to the long gaps in answering messages, others were perhaps more lucky!
The guy who wanted to call in at 8.00am on his way to work for a quickie, then got his nose out of joint when I said no, as I had to get up at 7.00am to walk the dogs, and that was my have- breakfast-and-wake-up-properly time…and I just wasn’t horny at that hour! No mention of alternative times from him, so bye!
The guy whose photo was always right next to mine on Scruff, and lived in the same suburb. After 6 months of this happening, I thought I’d just send him a message to say hi from another local…was intended to be quite innocent! I got the most abrupt message back, wanting to know what I was after! He did calm down when I explained it was intended to be nothing more than a hello from a neighbour, but it made me realise how judgemental people on these sites were.
The guy who kept sending me teasing messages, then messaged me one Saturday night saying that he and 4 other guys were having a party, were off their faces…and needed tops!
The much older guy who thought he was so desirable that he had a “stable” of guys. He visited me at home…non-sexually…and explained that he would pick and choose his sexual partner depending on his mood. Evidently, if you were lucky enough to be selected for an encounter, you were expected to drop everything and be available to satisfy his sexual requirements. Needless to say, the three times he rang me, to an unanswered phone, must have eventually given him the idea that…we’ll…I wasn’t available!
The guy who was in a relationship, but his partner was working, and he travelled for about an hour to get to my place, arrived at around 3.00am, then proceeded to sit and drink a bottle of wine (even I’d stopped drinking way before that hour), then at 4.00am when we hit the sack, wondered why I couldn’t keep a hard-on…could it have been that I had been drinking much earlier, and that I was REALLY tired?
The guy who had been messaging me for months to have an assignation. He had a profile picture of an attractive, well-groomed guy, and had there that he was into fitness. My profile stated that amongst my PREFERENCES were smooth guys, into fitness and health, as I was. Well…when he turned up, it was evident the profile picture was quite old. Wasn’t totally unattractive, but had unkempt hair and beard, was overweight…and very hairy. We did have sex, as he was actually quite a nice guy, and we lined up another date. As it turned out, I had to move back to Sydney before that came around, and messaged him to let him know. He messaged back asking who I was…that he couldn’t place me. Obviously just as well I wasn this hanging out for the second date!
Then there was my one quite satisfying encounter. Nice looking guy, great personality. Came over for dinner, and seduction, all achieved quite enjoyably. By this stage in my personal life, I had just split up with a partner I had been with for 16 years. We hadn’t had sex together for a number of years at this time…he had assignations behind my back (or so he thought), and I was monogamous inside a relationship…so I hadn’t had a good fucking for quite some time. Not surprisingly, my guest wasn’t a small boy, and there was some…not unexpected…discomfort after. However, the next day…it never rains but it pours…another guy messaged me could he come over. This guy was also in a relationship, but had fantasies about fucking guys raw (no condoms, that is). Not believing my luck, I agreed. He turned up for what was basically a “blow ‘n go”, but having some slight damage from the night before, there was a bit of blood when he drew out. Well…he freaked. I kept trying to reassure him that I was undetectable, had been for a long, long time, and that I couldn’t pass anything on…not even a good old-fashioned std! Anyway, after much showering and scouring, he left. I think he was having second thoughts about his sexual fantasies at this stage.
Then the strangest one of all! Met two guys on the Barebackers site. One was interested sexually…so I thought…and one was in a rather odd relationship, but just wanted friendship. They both knew each other quite well from the site, and both came over for a “check you out” visit. We hit it off really well, and I was quite attracted to the guy who I thought was sexually interested in me. Later that night, he dropped the other guy home and came back. We had a couple of glasses of wine, and a chat. There was a bit of touchy-feely, then he said he had to get home, so I said okay. The visits continued, and what appeared to be a friendship developed. Now, the guy informed me he used to be a gay male escort in Sydney back in the 80s. We had both already ascertained that we’d lied about our ages on the site, and as it turned out, there was only five years between us. So I got a real surprise one night when I progressed things from just tit play and tongue kissing…to oral. That was fine, but then I pulled him up off the lounge, and headed him to the bedroom. He freaked…and fled! I really couldn’t work out what was going on at all. The next time we chatted, it was like nothing had happened. A chat with our other mate revealed that he had invited his 80-odd-years-old parents to live with him…and that they (who were living in the flat of their 55-year-old son) and they actually dictated what time he should be home by! Anyway, for some unknown reason he got very stand-offish, and we lost contact just before I moved back to Sydney. At my first dinner party with friends back in Sydney, I must have accidentally pocket-dialled him. I received a rather abrupt message from him, informing me that he really didn’t appreciate me ringing him to show what a good time I was having back in Sydney! WTF!
Unlike other guys I know, by admitting my HIV+ status on these sites, I never had anyone ask me if I was “Clean”! What ignorant arseholes these people are! What gives them the right to embarrass and demean people in this way…it is just internalised homophobia/AIDSphobia. Many of the recipients of this “request” were guys who lived through the horror years of HIV/AIDS, fought the battles for access to medical care, sat back…defenceless…as their social circles – friends, acquaintances, relatives, partners – were obliterated from the face of the earth, fought their own battles with AIDS and associated illnesses, coming out the other end of it burnt out, emotionally and psychologically devastated…YET embracing new treatments and therapies, many of which had not been thoroughly trialled. They are here because they took control, found treatments that worked, thus increasing their CD4 counts, and are now living with undetectable viral loads. It is now proven beyond any shadow of a doubt that having unprotected sex with an HIV+ person with an undetectable viral load will NOT put you at risk to contract HIV! Yet there are low-lives on sex apps who have the rudeness and audacity to ask these guys if they are “Clean”? Seriously? Fuck off! And get a fucking education, you ignorant prick! I can assure you…it’s just as well you never confronted me with that!
Before I moved back to Sydney, I deleted the apps, and closed online accounts. I really had had enough. I just don’t get why guys are so dishonest, and make having sex such a difficult thing! It’s like everything that goes on through social media, and sex sites. People can hide behind profiles, and they seem to think that because there is no person-to-person contact, they have a licence to throw all decency, morals and ethics out the window…that it is just open slather to be rude, demean people, lead people on, and to hurt people with no consequences coming back on them! It is one of several big drawbacks of using these forms of media. This sort of irresponsible behaviour would never have been tolerated in the days of face- to-face meetings in bars. It is sad that gay men have cheapened themselves so much in these days of contemporary media!
I am reconciled to a sexless life these days…well, apart from what I can do myself! The gay scene in Sydney is pretty well dead. Ageism was always alive and well anyway, and that is something that has moved over into social media, and the sex/dating apps. There are no gay bars in the area I live in, and despite the odd occasional eye contact in my local clubs, there is little opportunity to meet other gay people. Most of my social life these days revolves around straight people in my own age group. It’s not that this concerns me, as they are wonderful, inclusive people…but not likely to provide a 66-year-old who still has a high libido a sex life! That some of the gay people we’ve met here have an attitude problem, doesn’t help.
A lot of gay men need to get over it! That somebody wants to chat to you doesn’t mean they want to pick you up! More often than not, they just want to interact with someone who shares their sexuality, to be able to talk”gay”. These are, in many respects, remote areas that don’t have rows of gay nightclubs and pubs, and we need to learn respect for each other, irrespective of age, disability or gender. We can be our worst enemy, and it’s time to move on from attitude and snobbery.
Next time you pass someone in your local village or town who you think might be gay…we are more often than not still obvious…throw them a smile and a “Hi”. It’s not going to cause you any harm (even if they are not gay), and it could well make that persons day.
The challenge of writing about 37 years of living with HIV/AIDS isn’t so much to write tomes about what actually was witnessed over that period. That is easy to do, and I could ramble on forever about it. The challenge lies in being objective and succinct, to tone down the schmaltz and sentimentality and cut to the chase. Not as easy as one may think, as these were the most challenging, relentlessly ruthless and heartbreaking years of my life. But if survival is the gauge of ones strength and tenacity, then I have come out at this end of it with flying colours. Indeed, the cup is half full!
So what was it really like in 1982 to be reading snippets in our local gay press about this mysterious illness in The States that seemed to be targeting gay men who frequented the saunas, and quickly killing them? Well, cynicism and disbelief to start with, and the surety that within a short period of time they would find an antibiotic to clear up yet another STD. Soon the snippets were to become columns, then pages as the mysterious and deadly illness leapt from the shores of America and found its way here.
Our response was mixed. The first recorded case of HIV at home was 1982, and the first death in 1983. We had our usual ratbags who yelled and screamed about God’s vengeance on the evil, sick and perverted gay lifestyle (obviously a different God to the compassionate, all-forgiving one that I had heard about), the advocates of hate who demanded quarantine for all infected persons, and those who either quietly or vocally wished that we would all die or just go away. Not that easy folks!
Thankfully, common sense prevailed and both the government and the grassroots gay community combined to put both AIDS Councils and NGO programs in place. Our quick response was instrumental in Australia always being at the forefront of HIV/AIDS care. Within 2 years every state had an AIDS Council under the national umbrella of NAPWA (National Association of People with AIDS), and the formation of support organisations such as The Bobby Goldsmith Foundation (named after the first person to die from AIDS in Australia), Community Support Network (CSN) and Ankali. Without these organisations life would have been grim for those infected. In 1985 testing was introduced. It was a bit of a strange affair in the early days. Due to hysteria and discrimination no one wanted their personal details on a database, so you chose a name, and Albion Street Centre issued you with a number that then became your ID. You had a blood test, and waited for two weeks – talk about high anxiety – to get your result. I had a mystery illness in 1982, a flu-type illness that wasn’t the flu, and already suspected that I had sero-converted and was going to come up HIV+. I was right. Counseling? Oh yeah, we had a lot of that back then. “You’ve got about 2 years to live”. Shrug shoulders “Okay”. And off we went knowing the inevitable was rapidly approaching, and it was time to PARTY!!! What else could you do?
However there were horror stories. The disgusting treatment of young Eve Van Grafhorst is something for all Australians to be ashamed of. Born in 1982, she was infected with HIV via a blood transfusion. When she attempted to enrol in her Kincumber pre-school in 1985, parents threatened to withdraw their children due to the (supposed) risk of infection. The family was literally hunted out of town, and forced to leave the country and go to NZ. I will never forget the sight of this poor, frail girl on her way to the airport. I, like many others, was horrified that this could happen in Australia. Thankfully, her NZ experience was quite the opposite, and she lived a relatively normal life until her death in 1993 at 11 years of age. Her parents received a letter from Lady Di praising her courage.
Meanwhile, the Australian nightmare was well and truly hitting home. My first close friend, Andrew Todd, died in 1986. At that time there was no dedicated AIDS ward, and Andrew was shifted between wards as beds were needed for other cases. He died on Boxing Day in A&E (called St Christopher’s ward, due to people usually just “travelling” through it on their way to a dedicated ward) at St, Vincent’s Hospital In Darlinghurst. It is interesting to note here that the Sisters of Charity, who founded this hospital, put the hospital at the centre of HIV care very early in the epidemic, and also provided palliative dare through the attached a Sacred Heart Hospice. I had the sad duty of ringing all my friends at a party to tell them the sad news. Party pooper recognition acknowledged! Ward 17 at St Vincent’s eventually became the dedicated AIDS ward, and for the next 10 years was never empty. Other hospitals such as Westmead hit the headlines for all the wrong reasons; full contamination clothing for those working with HIV people, rooms not being cleaned, meals left outside doors. Even the poor old mosquito copped a hiding as a means of contamination, along with toothbrushes, glasses, cutlery and crockery. An advertising campaign featuring the Grim Reaper bowling down poor people created an apocalyptic vision of HIV that scared the life out of everyone. It was quickly withdrawn. In the interim, my 2 years became 4, which became 6 followed by 8. My life became a haze of alcohol and cigarettes, not shared alone.
In the 80’s I held a lot of parties with anywhere from 40- 60 friends attending. By 1996, if I had tried to hold a party I would have been lucky to have dug up 10 friends to attend. In the blink of an eye my social circle was effectively wiped off the face of the earth. Hospitals, hospices, funerals and wakes became the dreaded regular events. It was death on a relentless and unforgiving scale. The Quilt Project became the focus of our sorrow, and it’s regular unfoldings and name readings were tear-filled times of remembrance and reminiscence, along with the yearly Candlelight Rally. I attended until I became so empty that I could no longer bear it. I submitted my names but no longer attended. In the early 90’s four friends died close together – two from AIDS, one a heart attack and one cancer. This was a particularly heavy blow as two of these friends had been regular “gutter drag” partners, and that part of my life effectively ended. In a perverse way, it seemed strange that the Big A wasn’t the only thing stalking our lives.
Despite its reputation for being human Ratsac (the Concorde Study in France named it such, after conducting an unethical trial; turns out they were correct!) I started taking AZT when my CD4 count started to take a dive. Hard work, long hours, heavy drinking, chain smoking, a shit diet and emotional turmoil didn’t help. Pub culture became lifestyle. Did several drug trials – D4T, which was sort of successful, though the same class of drug as AZT. Also p24 VLP (Very Light Protein) which proposed that stimulating the p24 antigen may help control HIV. Total waste of my time. It did nothing. We started alternating drugs – 6 months on AZT, 6 on D4T, 6 on DDI, 6 on DDC. Perversely it seemed to keep the wolf from the door. Dosage was huge. Everyone on it ended up with kidney problems and peripheral neuropathy. Prophylactics added to the drug burden. In the meantime there was no HIV dental service and our teeth rotted or fell out due to bouts of candida. I left work in 1993 after being seriously knocked around by viral pneumonia which should have killed me…but didn’t.
Like many, I went on every drug or alternative trial that came my way. There are those who have described us guinea pigs as brave, or “heroes”, but we certainly didn’t feel like that at the time, despite it being a very selfless act. The thinking at such a desperate time was that…well, if it works for me, the benefit will flow onto everyone else! But there were, in the early days at least, more failures than successes. D4T:FAILURE…caused anaemia; P24-VLP:FAILURE…was hoped it would boost the p24 antigen – it did nothing: Goat Serum:FAILURE…though I did get a very scary skin rash from it; Vitrasert Implants: FAILURE…though due more to HAART eradicating the scourge of CMV retinitis. Were intended to leach Ganciclovir into the eye over a 9 month period, thus eliminating the need to have it injected into the eye regularly. Two minor operations to insert them, with an initial estimate of a 4% chance of developing cataracts. Turned out to be a 100% chance, thus further operations to remove the cataracts. Fun, baby!
I was shuffled onto the pension, and given rent subsidised housing by DOH (Department of Housing). The subsidy seemed like a good idea at the time. After all, weren’t we all eventually going to be killed by the Big H, so no one would be on it for that long? Famous last words! My alcohol consumption and chain smoking increased, if that was possible! Was losing weight at an alarming rate, and naturally no one noticed because I took to wearing baggy clothes to disguise it. Nothing quite like being delusional. Moved from Darlinghurst to Bondi. Nothing like moving away from the scene to help your health…not! Collapsed in the street, and admitted to St Vincent’s not with PCP as suspected but a collapsed lung. Two weeks later and a change of female GP’s saw me back in the doctor’s rooms while she read my hospital discharge report. Had they tested me for CMV retinitis? No! Was I having trouble with my vision? Yes, but I do wear glasses. Guess what? We’re sending you for a little holiday at Prince Henry Hospital (now closed). I was a little bit sick. Chronic CMV retinitis, chronic candida, chronic anemia, had 10 CD4 cells and weighed 48 kgs. Mmm, prognosis was not good. Well, it had been a good life. I was certainly joining a band of party people. But no! Life hadn’t finished with me yet. Protease Inhibitors had come along at an auspicious time, and within a fortnight I had been stolen from the arms of death. Mind you, that fortnight had been no picnic. Ganciclovir injections into the eye, Deca-Durabolin injections to help put weight back on, blood transfusions, and enough finger prick blood readings to last me the rest of my life. And the problems had just started for this return-to-lifer. Not dying when you are supposed to really fucks up your head space.
So started the next round of therapies. Peer Support groups; counselors; Caleo (Greek word which means “To Stick”, a treatment management group who help you maintain the impetus to take the billion pills a day (I was taking over 360 pills a week – anti-retrovirals, prophylactics, and pills to control side effects – at one stage) we were taking); clinics; dental care (now up and running); volunteer work (to keep one sane). What started out as volunteer work at the then PLWHA (NSW) Inc (now Positive Life) turned into paid employment as a research assistant. I started writing for “Talkabout” magazine, joined the Positive Speakers Bureau, and learnt to use a computer. A couple of stints back in full-time employment made me realise that big changes needed to be made with my life. By this time my health was pretty well back together. A couple of nights out pushed home just how few people I knew, however did lead to meeting my current (now ex) partner. A brief encounter with Indinivir sludge in my kidneys (which involved having a stent inserted then removed) also made me aware that for HIV+ people the unexpected can happen at any time. Yet another change of doctor. Self-empowerment had become an important issue, and I wanted a say in my health management, as distinct from being dictated to. Big changes were about to happen.
In 2000 David and I did a big (and expensive) holiday to the Red Centre. It was an amazing experience. Before leaving Sydney I had applied to the University of Technology in Sydney to do my degree in writing. Shortly after arriving back home I was informed that I had been accepted. Ah, the advantages of mature age AND disability. So spent three years doing my Graduate Certificate in Writing, was office- bearer for the Special Needs Collective…in fact I WAS the Special Needs Collective, and discovered I hated having to deal with the moronic “radicals” who called themselves the Student Association and did nothing except rant and rave, and waste student money. I was glad to leave uni. Towards the end of 2004 I decided to get my chef’s credentials from East Sydney TAFE, and crammed a 12-month course into 6 months. As much as I hated uni, I really loved TAFE and found it more grassroots and honest. David and I started Alderman Catering, a top-end catering business though it only lasted about 2 years as I found it very exhausting. I then sort of returned to my retail roots by opening a web site called Alderman Providore to sell Australian made gourmet grocery items. The site proved successful, and within 4 years I was opening my second site, this time specialising in tea, coffee and chocolate products. I got involved in a trial using Goat’s Serum to treat HIV, but again another waste of time. I did manage to get a skin rash from it, and managed to score a $1,000 for participating. In late 2009 the GFC hit, and online shopping took a major hit. After a disastrous Christmas that left me severely out if pocket, I decided to sell the business and put it behind me.
More eye problems followed, this time involving my blind eye. Back to the regular rounds at the Sydney Eye Hospital, and an injection of Avastin (a cancer drug that reduces blood flow) into the blind eye to stop it creating new blood supplies to an eye that couldn’t see. By this time, the interior of the bad eye was collapsing, and it took on an unnatural colour. Before this I hadn’t looked blind. Now I did! Scary how anyone you talk to can pick an anomaly – and stare at it while talking.
The next step, which sort of brings us up to date (this was 2011), was a major move. Plans to move north had been on the agenda for 10 years – in 2011 it finally happened, though we did jump the border which wasn’t in the original plan. No sooner were we there than my retina detached (I had been warned to eventually expect this, due to the amount of CMV scar tissue in the eye) in my one seeing eye…or rather was pushed off by all the scar tissue present from my original CMV infection. An emergency operation to scrape down the scar tissue, and replace the retina and fluid (called a vitrectomy) has seen my sight degenerate even further and I am now the proud owner of a white cane curtesy of Guide Dogs Queensland. It has become obvious that our two Jack Russell’s are not, despite their best of intentions, good seeing-eye dogs. I can see, though very poorly. A lot of life is a blur these days.
However, I am not going to complain. I have always enjoyed a challenge, and this presents yet another one. I gave up smoking 23 years ago, and drink only lightly and socially these days. I adopted a healthy diet and exercise program 10 years ago when I started getting unattractively over-weight and inactive.I have turned my life around by adopting this course of action. In 2013 I attended Southbank Institute of Technology in Brisbane and obtained my Certificate III in Fitness. I hoped this would lead on to becoming a Personal Trainer for mature-age and disabled people both individually and in conjunction with my local gyms. I was almost 60 by the time I finished. Just in time for the next stage of my life.
In 2014 David and I called an end to our 16 year relationship. It had run its course, and with a 14-year age gap…I’m the older…we were both at different stages of our lives. It was amicable, and we are still friends. However, it was the start of a year from hell. A disastrous 60th birthday followed, them an attack of shingles that was the worst Royal Brisbane Hospital’s Infectious Diseases Unit had ever seen, leading to an infection in the blisters that landed me in hospital with blood poisoning, followed by two weeks with a portable drip through their Hospital In The Home initiative (Neuralgia and numbness from this are still a problem 5 years down the line). Then our first rescue dog, Ampy, died. I was also faced with some serious decisions. With the parting of our ways, I could no longer afford to live in the house we were in being on a pension, and of the options open to me, returning to Sydney to move in with an ex from the 80s was the only viable one. I also made a nerve-wracking decision to have my blind eye removed, and replaced with a prosthetic. After years of ongoing problems with it, was time it came to an end, and the operation occurred in early 2015 just prior to my other dog, Benji, and myself returning to Sydney.
I stayed in Sydney only for as long as I needed to be there. I hated it! A cold, over-populated, rude city. Within 12-months, we…I include my housemate, who also came with me…moved to the Central Coast, where life is quiet, and more civilised. Life goes on…I’ve lived long enough now to start seeing the truth finally being told about many aspects of HIV – the high toxicity and ongoing problems caused by AZT, exploitation by Big Pharma, misuse of funding, unresearched and often inaccurate advice on therapies and treatments, the rushing through of many treatments that proved detrimental to those who took them. It’s time to clear the air, and take the sentimentality out of an often rose-coloured glasses view of the epidemic.
37 years eh! OMG where have those years gone? Despite all the discrimination, stress, anxiety, illness, deaths, survivor guilt and despair, there have been moments of great introspection, illumination, strength and enlightenment. That over-used word “empowerment” springs to mind and that is perhaps the one word that sums all those years up. Victim? No way! Survivor? Not in my words! And I have never been one to wallow in self pity. You just need to grab life by the balls, and get on with it. I trust that is what I have done.
In the period October 1980-May 1981, 5 young men, all active homosexuals, were treated for biopsy-confirmed Pneumocystis carinii pneumonia at 3 different hospitals in Los Angeles, California. Two of the patients died. All 5 patients had laboratory-confirmed previous or current cytomegalovirus (CMV) infection and candidal mucosal infection. Case reports of these patients follow.
In honor of National Gay Men’s HIV/AIDS Awareness Day, I’m republishing my article on the first report documenting the emergence of the HIV/AIDS pandemic. That article, published in the CDC’s Morbidity and Mortality Weekly Report on June 5, 1981, describes five cases of an unusual form of pneumonia in atypical patients, all young men. The broader social and public health implications of these five cases were not understood at the time of the article’s publication, but would be in just a few unnerving months. In short time, it would become clear that this pneumonia, caused by a tiny fungal organism, was part of a constellation of diseases associated with a novel and highly unusual viral infection that was spreading rapidly through a subset of the American population.
This MMWR article is the first record of an emerging outbreak that, in just one decade, would be the second leading cause of death in young American men 25 to 44 years and have infected over 8 to 11 million people worldwide. As I note in my article, “the June 5th report is a symbol of a time before HIV/AIDS became ubiquitous, before it became a pandemic, before a small globular virus became mankind’s biggest global public health crisis … June 5th marks the beginning of a radical transformation in how disease surveillance and medicine was conducted.” The HIV/AIDs outbreak, since this report’s publication and the growing awareness of the virus, has profoundly changed medicine, public health, virology, and the lives of millions of people.
It often seems that gay men are disproportionately, and perhaps unfairly, bludgeoned with HIV educational and awareness campaigns. After all, this virus is an equal opportunist infector infecting both genders of all sexual orientations. And, yes, men that report having sex with other men represent a truly tiny proportion of the United States population, a slim 2% of the three-hundred million that live in this country.
However, as the CDC reports, gay men account for 63% of all newly diagnosed HIV infections in the United States and make up 52% of the current population of people living with a HIV diagnosis. Stopping the continued transmission of HIV/AIDS in this country critically relies on affecting change and promoting awareness among these men. In 1981, we just became aware of the HIV/AIDS virus. Today, we continue to bring awareness to prevention, testing, and treatment of a virus that continues to percolate through the same vulnerable population that was brutally affected nearly thirty years ago.
June 5, 1981. Pneumocystis Pneumonia. Los Angeles.
“Pneumocystis Pneumonia — Los Angeles,” in the June 5, 1981 edition of the CDC’s Morbidity and Mortality Weekly Report, was an economical seven paragraph clinical report cataloging five observed cases, accompanied by an explanatory editorial note on the rarity of this fungal disease. It seemed to be nothing out of the ordinary from MMWR, a publication that has been issuing the latest epidemiology news and data from around the world for 60 years. The report was included in that week’s slim 16 page report detailing dengue in American travelers visiting the Caribbean, surveillance results from a childhood lead poisoning program and what measles had been up to for the past five months.
Since 1978, Dr. Joel Weisman, a Los Angeles general practitioner, had been treating dozens of gay men in the city presenting with a motley collection of uncommon illnesses – blood cancers, rare fungal infections, persistent fevers and alarmingly low white blood cell counts – typically seen in the elderly and immunocompromised (1). In 1980, he was struck by two profoundly ill men and by the similarity of their symptoms, their prolonged fevers, dramatic weight loss, unexplained rashes and swollen lymph nodes. He referred them to Martin Gottlieb, an immunologist at UCLA who just so happened to be treating a gay patient with identical symptoms.
All three men were infected with Pneumocystis pneumonia, caused by the typically benign fungus Pneumocystis jirovecii, and soon Gottlieb would hear of a two more patients with the fungal infection from colleagues (2). The MMWR editorial note accompanying the report of these cases would mention that Pneumocystis pneumonia, or PCP, is “almost exclusively limited to severely immunosuppressed patients” and that it was “unusual” to find cases in healthy individuals without any preexisting immune system deficiencies. The disease would later be cataloged on immunological graphs illustrating the awful decline of the infected – first the CD4+ T-cell count falls as the viral load ascends, then a marching band of viral, fungal, protozoan and bacterial infections capitalizing on the loss of CD4+ T-cells. PCP is now known as a classic opportunistic infection of those infected with HIV/AIDS.
In the first sentence, the report would note that the young men were “all active homosexuals.” These five were all “previously healthy” men in their late 20s and 30s. They did not know each other, they did not share common contacts and they did not know of any sexual partners suffering with similar symptoms.
Three of the men were found to have “profoundly depressed” numbers of CD4+ T-cells. All five reported using inhalant drugs, or “poppers,” common in that era among gay men, which would later serve as a lead into this new syndromic disease (3). Cytomegalovirus, found in the five men, was also suspected as a culprit behind this strange outbreak. The editorial note stated definitively that “the fact that these patients were all homosexuals suggests an association between some aspect of a homosexual lifestyle or disease acquired through sexual contact and Pneumocystis pneumonia in this population.”
By the time the very first report on this acquired immunodeficiency syndrome, which we now know as AIDS, had been published by Gottlieb and Weisman and three fellow physicians in the MMWR, two of the patients had already died.
New reports showed up after the June 5th report, the list of cancerous malignancies and bizarre diseases killing young gay men blossoming in number, seemingly inexhaustible in scope and variety. The first reported cluster was in Los Angeles but by the summer and fall of 1981, reports would trickle in from San Francisco and New York City, and then Miami, Houston, Boston and Washington, D.C. would represent new epicenters.
The July 4th report on 26 cases of Kaposi’s sarcoma, a rare cancer that only appeared in elderly men of Mediterranean descent, in California and New York City was another pivotal report on this new syndromic disease. The entire December 1981 issue of The Lancet was dedicated to the disease and hypothesized on the origins of this immunological deficiency but, tellingly, none of the articles proposed an emerging infectious disease as the culprit. The disparate constellation of diseases seemed to be linked only by their aberrational appearance in men in what should have been their prime, their gay lifestyle, and abnormally low CD4 cell counts. It had no apparent origin, and physicians were scrambling to find an appropriate treatment to decelerate the rapid progression to death.
By December 1981, it became clear that this disorder wasn’t limited to gay men but also affected intravenous drug users, recipients of transfused blood products and immigrant Haitians. The escalating numbers of cases reported daily and the disastrous mortality rate – 40% of patients were dying within a year of diagnosis – began to sow panic in the public health and medical world that soon spilled into the public (4).
It would take three years before the virus was detected and AIDS was definitively linked to an infection caused by a novel virus, human immunodeficiency virus or HIV. In just a decade, AIDS would be the second leading cause of death in young men 25 to 44 years in the United States and would have infected over 8 to 11 million people worldwide (5). The most recent estimate for the number of people worldwide living with HIV/AIDS is 34 million in 2011, with 68% residing in sub-Saharan Africa (6). That year, there were 2.5 million new HIV infections and 1.7 million AIDS-related deaths.
Though the June 5th, 1981 report was overlooked at first, for many years it would be “one of the most heavily quoted articles in the medical literature” (2). And since its publication, we have seen a cataclysmic shift in how the interrelated worlds of public health and medicine view infectious diseases, especially how to prevent, control and educate the public about them.
June 5th marks the beginning of a radical transformation in how disease surveillance and medicine was conducted. In the seventies, the scientific consensus on infectious diseases was that they were largely eradicated, that they were finished. Vaccines had diminished their presence in modern society, and antibiotics and antivirals would sort out the rest. HIV/AIDS changed that mentality and reality. It seemed to come from nowhere, the blossoming epidemic completely unforeseen and unprecedented in its scope. The June 5th report is a symbol of a time before HIV/AIDS became ubiquitous, before it became a pandemic, before a small globular virus became mankind’s biggest global public health crisis.
Author’s note: This article was originally published in January 2013 at thePump Handle blog as a part of a series on “public health classics,” exploring some of the classic studies and reports that have shaped the field of public health. Check out the original articlehere.
The man blamed for bringing HIV to the United States just had his name cleared.
New research has proved that Gaëtan Dugas, a French-Canadian flight attendant who was dubbed “patient zero,” did not spread HIV, the virus that causes AIDS, to the United States.
A cutting-edge analysis of blood samples from the 1970s offers new insight into how the virus spread to North America via the Caribbean from Africa. More than 1.2 million people in the United States currently live with HIV.
The research, conducted by an international team of scientists, was published this week in the journal Nature.
“No one should be blamed for the spread of a virus that no one even knew about, and how the virus moved from the Caribbean to the US in New York City in the 1970s is an open question,” co-author of the research, Dr. Michael Worobey, a professor and head of the ecology and evolutionary biology department at the University of Arizona, said at a news conference Tuesday.
“It could have been a person of any nationality. It could have even been blood products. A lot of blood products used in the United States in the 1970s actually came from Haiti,” he said. “What we’ve done here is try to get at the origins of the first cases of AIDS that were ever noticed. … When you step back in time, you see a very interesting pattern.”
‘Patient zero’ and the power of a name
In 1981, researchers at the Centers for Disease Control and Prevention first documented a mysterious disease. In their research, they linked the human immunodeficiency virus, or HIV, to sexual activity.
In 1987, the National Review referred to him as the “Columbus of AIDS,” and the New York Post called him “the man who gave us AIDS” on its front page.
“We were quite annoyed by that, because it was just simply wrong, but this doesn’t stop people from saying it, because it’s so appealing. You know, ‘The man who brought us AIDS.’ Well, if it were true, it would be annoying, but since it isn’t true,
Gaëtan Dugas was dubbed “patient zero.”
However, the letter O was misinterpreted as a zero in the scientific literature. Once the media and the public noticed the name, the damage was done.
Dugas and his family were condemned for years. In Randy Shilts’ seminal book on the AIDS crisis, “And The Band Played On,” Dugas is referenced extensively and referred to as a “sociopath” with multiple sexual partners.
In 1987, the National Review referred to him as the “Columbus of AIDS,” and the New York Post called him “the man who gave us AIDS” on its front page.
“We were quite annoyed by that, because it was just simply wrong, but this doesn’t stop people from saying it, because it’s so appealing. You know, ‘The man who brought us AIDS.’ Well, if it were true, it would be annoying, but since it isn’t true, it’s even more annoying,” said Dr. James Curran, dean of Emory University’s Rollins School of Public Health and co-director of the university’s Center for AIDS Research.
Curran, who was not involved in the new research, coordinated the AIDS task force at the CDC in 1981 and then led the HIV/AIDS division until 1995.
“The CDC never said that he was patient zero and that he was the first person,” Curran said of Dugas.
“In addition to the potential damage to his reputation, it was also a damage to scientific plausibility. That there would be a single-point source to start the epidemic in the United States is not very likely. It’s more likely that several people were infected,” Curran said. “I think that the concept ofpatient zero has always been wrong and flawed, and scientists never said it.”
Dugas died in 1984 of AIDS-related complications. Now, more than 30 years later, scientists have used samples of his blood to clear his name.
Going back in time with blood
For the new research, Worobey and his colleagues gathered archival blood samples in New York and San Francisco that were originally collected for a hepatitis B study in 1978 and 1979. The samples came from men who had sex with men.
The researchers screened the samples and noticed that “the prevalence of HIV positivity in these early samples from hepatitis B patients is really quite high,” Worobey said Tuesday.
From the samples, the researchers recovered eight genome sequences of HIV, representing the oldest genomes of the virus in North America. They also recovered the HIV genome from Dugas’ blood sample.
As many of the samples had degraded over time, Worobey’s lab developed a technique called “RNA jackhammering” to recover the genetic material.
The technique involves breaking down the human genomes found in the blood and then extracting the RNA of HIV to recover genetic data about the virus, an approach that’s similar to what has been used to reconstruct the ancient genome of Neanderthals in separate studies.
“The major contribution which interested me the most was their capacity to restore full sequence genomes from very old serum samples using the jackhammer technique,” Curran said of the new research.
After analyzing the genomes, the researchers found no biological evidence that Dugas was the primary case that brought HIV to the United States, and the genome from Dugas appeared typical of the other strains already in the United States at the time.
The researchers discovered strong evidence that the virus emerged in the United States from a pre-existing Caribbean epidemic in or around 1970.
How HIV arrived in the United States
Sequencing genomes allows scientists to take a peek back in time to determine how a virus emerged and where it traveled by examining how many mutations appear in the genome.
Scientists estimate that HIV was transmitting in humans after a chimpanzee infected a single person sometime in the early 20th century in sub-Saharan Africa. The general consensus among scientists is that HIV then crossed the Atlantic and quickly spread through the Caribbean before it arrived in the United States, probably from Haiti, Curran said.
Scientists at the University of Oxford published a separate study in June suggesting that HIV spread through specific migration routes — based on tourism and trade — throughout the past 50 years as it made its way around the world.
The research team behind the new genetic analysis now hopes that its findings may lead to a better understanding of how HIV moved through populations — and how blaming a single patient for the pathogen’s rise remains troublesome.
“In many ways, the historical evidence has been pointing toward the fallacy of this particular notion of patient zero for decades,” Richard McKay, a historian of medicine at the University of Cambridge and a co-author of the new research, said at Tuesday’s news conference.
“The study shines light from different angles to better understand the complexity of an important period in the past,” he said. “In view of this complexity, one of the dangers of focusing on a single patient zero when discussing the early phases of an epidemic is that we risk obscuring important, structural factors that might contribute to its development: poverty, legal and cultural inequalities, barriers to health care and education. These important determinants risk being overlooked.”