Tag Archives: HIV/AIDS

Exonerating “Patient Zero”: The Truth About ‘Patient Zero’ And HIV’s Origins

Article, Gay Interest, General Interest, Health Information, HIV/AIDS, , , , ,

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 of patient 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.”

Reference

Gay History: 30 Years Later, a Look at the First AIDS Drug.

Article, Gay Interest, HIV/AIDS, , , , , , , ,

The FDA approved AZT in a record 20 months, a move that remains controversial today

All these years on, we are finally telling the truth about this insidiously poisonous drug, and the great marketing job by Big Pharma to sell it to a desperately ill population of people, and doctors who were also desperate, to provide some hope for their patients! The movie “Dallas Buyers Club” tells some of the story, of those who wanted something better than AZT to assist them in staying alive until something beneficial came along – which it eventually did! Things were not quite so bad here as far as pricing went, as with our Medicare system, the drugs were listed on the Pharmaceutical Benefits Scheme as soon as they became available, and cost a mere couple of dollars per script to buy. But the big sell by Big Pharma also happened here, as did the results of several badly run trials. Like many, the biggest mistake I ever made back in those early days of drug treatments was to let my doctor eventually talk me into taking AZT – against my better judgement! And it’s not just me, but many others who will attest that all our immune system and declining health problems started at the same time we decided to take AZT. It’s not as if we were only on a couple of pills a day – we were on massive doses, and as I have already said, this drug was poison…”human Ratsac” was how it was described in a report from the “Concorde” trial…another unethically run trial, but one that didn’t sugar-coat the truth about AZT. Those who took the massive doses of AZT back in the late 80s/early 90s suffered from problems such as anaemia, peripheral neuropathy, and renal problems…and still do to this day!

HIV was first reported in 1981, but it wasn’t until six years later—in March 1987—that a drug to fight the virus was approved by the Food and Drug Administration (FDA). On the 30th anniversary of this milestone, Time magazine takes a look at the story behind the controversial med azidothymidine, commonly known as AZT.

Also known as Retrovir or zidovudine, the compound AZT was not originally created with HIV in mind but was developed in the 1960s to battle cancer. Decades later, scientists at pharmaceutical giant Burroughs Wellcome made a version of AZT to fight HIV.

To fast-track the med, the drugmaker conducted a trial with 300 people who had AIDS. After 16 weeks, it was halted because those taking AZT were doing so much better than those not on the med. The results were considered a breakthrough, and the FDA approved the drug on March 19, 1987, in a record 20 months, according to Time.

The approval was granted despite many questions remaining unanswered—for example, how long did the benefits last?—and despite other issues surrounding the trial itself. In fact, Time notes, the trail remains controversial today.

Then came a bigger controversy: the price tag. At about $8,000 a year ($17,000 in today’s dollars), AZT was unattainable to many.

Today, we have more than 41 drugs to treat HIV, many in combo form and with much fewer side effects.

Reference

Gay History: When Gay Journalists Were Closeted: A History of AIDS Coverage at ‘The Times’

Article, Gay Interest, HIV/AIDS, , , , ,

Mark Frankel

November 23, 2015
Days after New York State approved marriage equality in 2011, Samuel G. Freedman, a School of Journalism professor and former reporter for The New York Times, mused to friends about how the world had changed since he had worked at the paper in the 1980s.
Now an enthusiastic proponent of gay marriage, The Times was then a place where gay reporters feared being exiled to obscure beats and watching their careers wither. Freedman’s musings centered on his friend and mentor, Jeff Schmalz, a brilliant Times reporter dying of the disease who in 1992 and 1993 produced groundbreaking articles about people living with AIDS.
“Jeffrey who?” people often asked. Out of those encounters has come Freedman’s eighth book, Dying Words: The AIDS Reporting of Jeff Schmalz and How it Transformed The New York Times.
Produced as an oral history of dozens of Schmalz’s colleagues and friends, the book and an accompanying radio documentary focus on how journalism responded to the AIDS crisis in the 1980s and early ’90s, when many gay and lesbian journalists felt tremendous professional pressure to remain closeted, and discrimination against them was widespread. It also recounts the moment AIDS became a full-fledged health crisis, breaking out of the gay and IV-drug communities into the larger population.
“Jeff’s reporting played a real role in starting to turn opinion, certainly within The Times, but also within the broader public, from fear, suspicion, finger-pointing and blaming gays, to empathy and acceptance,” said Freedman. The 60-minute radio program will be broadcast on some two dozen public radio stations as part of events marking World AIDS Day on December 1. That same day, Freedman will host a panel on Dying Words at 6 p.m. at the Journalism School.
Schmalz was a rising star at the Times in the 1980s, a consummate journalist and skilled newsroom politician and mentor to younger journalists. When Freedman arrived at the paper in 1981, he soon was among those taken under Schmalz’s wing.
Though out of the closet to close friends at the paper, Schmalz kept his orientation hidden from higher-ups such as Abe Rosenthal, its executive editor from 1977 to 1986, and then-publisher Arthur Sulzberger.
“Abe Rosenthal hired me and promoted me, and I owe him a lot, but in doing this research I became very aware of his antipathy toward gay staffers at The Times,” said Freedman. “And it also became apparent that, in a less visible way, Punch Sulzberger also had a blind spot about gays.”
Critics inside and outside the newsroom accused the paper of being late to cover the AIDS crisis.
In December 1990, Schmalz, then deputy national editor, suffered a seizure in the newsroom. The diagnosis was full-blown AIDS, then a death sentence. For Schmalz, the closet was no longer an option. “Jeff commanded tremendous authority at the Times. So for him to come out had a tremendously sensitizing effect on the paper,” recalled Freedman.
When Schmalz returned to the paper in mid-1992, he was sick but determined to report on AIDS. By then, the paper had a new editor and publisher and, Freedman said, was more accepting of its gay and lesbian employees.
Over the next 15 months, Schmalz captured the many faces of AIDS, gay and straight, in some three dozen articles. He profiled Magic Johnson, the Los Angeles Lakers forward who quit basketball when he was diagnosed as HIV-positive, and AIDS activists Mary Fisher and Larry Kramer. “In a weird way, the diagnosis set him free,” recalled his sister, Wendy Schmalz Wilde. “He found a new empathy for other people who were sick and dying.”
Schmalz’s reporting took AIDS “from a medical story, a public health story, a science story, and made it a deeply human story,” said Freedman. “He got on the beat right when this was a disease crossing the lines of race, class and sexual orientation.” His articles also raised the bar on the paper’s AIDS coverage, setting a standard for other news organizations. His last story, which decried growing public complacency, appeared several weeks after his death in November 1993.
Freedman teamed with veteran radio producer Kerry Donahue to produce the radio documentary, which will be distributed by the Public Radio Exchange. Funds came from the Journalism School and a Kickstarter campaign that raised $28,000. A significant backer was current New York Times publisher Arthur Sulzberger Jr., who contributed his own reminiscences to Dying Words.
Schmalz’s death still haunts Freedman. “Jeff was an example of a supremely talented person who died at 39,” he said. “The world is still losing incredibly talented people at young ages. It’s a reminder of the continuing need to do the research that will cure the disease and of the role that journalists need to play.”

In December 1990, Schmalz, then deputy national editor, suffered a seizure in the newsroom. The diagnosis was full-blown AIDS, then a death sentence. For Schmalz, the closet was no longer an option. “Jeff commanded tremendous authority at the Times. So for him to come out had a tremendously sensitizing effect on the paper,” recalled Freedman.

When Schmalz returned to the paper in mid-1992, he was sick but determined to report on AIDS. By then, the paper had a new editor and publisher and, Freedman said, was more accepting of its gay and lesbian employees.

Over the next 15 months, Schmalz captured the many faces of AIDS, gay and straight, in some three dozen articles. He profiled Magic Johnson, the Los Angeles Lakers forward who quit basketball when he was diagnosed as HIV-positive, and AIDS activists Mary Fisher and Larry Kramer. “In a weird way, the diagnosis set him free,” recalled his sister, Wendy Schmalz Wilde. “He found a new empathy for other people who were sick and dying.”

Schmalz’s reporting took AIDS “from a medical story, a public health story, a science story, and made it a deeply human story,” said Freedman. “He got on the beat right when this was a disease crossing the lines of race, class and sexual orientation.” His articles also raised the bar on the paper’s AIDS coverage, setting a standard for other news organizations. His last story, which decried growing public complacency, appeared several weeks after his death in November 1993.

Freedman teamed with veteran radio producer Kerry Donahue to produce the radio documentary, which will be distributed by the Public Radio Exchange. Funds came from the Journalism School and a Kickstarter campaign that raised $28,000. A significant backer was current New York Times publisher Arthur Sulzberger Jr., who contributed his own reminiscences to Dying Words.

Schmalz’s death still haunts Freedman. “Jeff was an example of a supremely talented person who died at 39,” he said. “The world is still losing incredibly talented people at young ages. It’s a reminder of the continuing need to do the research that will cure the disease and of the role that journalists need to play.”

Reference

Gay History: Lex Watson: Leading Gay Rights Activist and Trailblazer.

Autobiography, Gay Interest, HIV/AIDS, Political, , , , , ,

LEX WATSON, 1943-2014

For many of his generation and beyond, Lex Watson was the face of gay activism in Sydney.

For many of his generation and beyond, Lex Watson was the face of gay activism in Sydney. He was a foundation member of the Campaign Against Moral Persecution (CAMP), the organiser of the first gay rights demonstration in Australia, a longtime passionate advocate of homosexual law reform and of anti-discrimination legislation, a pioneer AIDS activist, and in later years, a keen advocate for the preservation of gay community history.

Lex Watson addressing gay rights activists setting up their ‘Gay Embassy’ opposite former NSW premier Neville Wran’s home in Woollahra to protest against Club 80 arrests in 1983.

CREDIT: ADRIAN SHORT

Alexander Watson was born in Perth on January 29, 1943, the son of Alec Watson, a medical practitioner in Geraldton, and his wife, Margaret (nee Newnham), a nurse. Lex started his education in Geraldton, then the family settled in Perth, where Alec became a well-known surgeon.

Despite his parents’ wish to place him at Geelong Grammar, or the King’s School in Parramatta, Lex was determined to go to Perth Modern. There he developed a lifelong love of languages, particularly German, and music, again particularly German, from Beethoven to the present day. At school he acted in Gilbert & Sullivan productions, directed by a teacher who remarked that he was ‘‘rather self-confident and arrogant’’, an observation often to be made of him throughout his life.

Lex Watson (left) and Robert French signing statutory declarations in 1983.

At puberty, Watson’s parents gave him a booklet on sex that contained a small non-judgmental paragraph on homosexuality. ‘‘So that’s what it is called,’’ he thought. He then looked up homosexuality in the school library, but all the texts he consulted talked of disease and perversion. Watson’s response was, ‘‘Why, they’ve got it wrong!’’ but it was a defining moment in his life.

Watson won a scholarship to the University of Western Australia, where he started in 1960. He did an arts degree and studied history and philosophy He read John Stuart Mill, whose classic liberalism became the touchstone of his life and later activism. He later became a supporter of the Council of Civil Liberties.

For his honours year, Watson transferred to the government department at the University of Sydney. It was there that he worked for the remainder of his academic life, teaching Australian politics to hundreds of students, many of whom became academics and political activists themselves.

The homosexual law reforms in Britain in 1967 sparked Watson’s interest and he became involved with reform in Australia because ‘‘it was needed and therefore you did it’’. He was in Canberra in 1970 on the weekend of the formation of the ACT Homosexual Law Reform Society and joined up. He then attended a public meeting in Sydney, organised by the Humanist Society, which formed a HLR sub-committee, which he became a member of.

Lex Watson as the Empress of Sydney in 1982.

These moves, however, were ‘‘wiped off the table’’ by the announcement by John Ware and Christabel Poll in September 1970 of the formation of the Campaign Against Moral Persecution (CAMP), the first openly homosexual group in Australia. Watson became a foundation member, and in early 1972, along with Sue Wills, became a co-president.

Ware credited Watson with making the organisation political, and it was Watson who organised the first gay demonstration, outside the Liberal Party headquarters in Ash Street, Sydney in October 1971.

Watson, as an academic, had contacts in the Liberal Party and got to hear of the challenge that conservative Jim Cameron was to bring against the federal pre-selection of Tom Hughes, after Hughes as federal attorney-general had raised the issue of homosexual law reform.

One of the major achievements of CAMP under Watson and Wills was highlighting the dangers of aversion therapy and psycho-surgery as then practised against women and homosexuals. That homosexual people then began to cease consulting practitioners for a ‘‘cure’’ for their sexual orientation was a triumph for CAMP.

Watson and Wills resigned from CAMP in October 1974 as the organisation concentrated more on its phone-counselling services.

Watson continued his activism and advocacy through newspaper articles in the gay press. In 1976 he, memorably and courageously, appeared on the ABC’s Monday Conference program in Mt Isa. Some of the audience were hostile, one member even pouring a bottle of sewage over his head. Watson maintained his composure throughout and won over the audience.

With the assistance of fellow academic and activist Craig Johnston in 1980, Watson approached Barrie Unsworth of the NSW Trades & Labor Council after the University of Sydney staff union had passed an anti-discrimination motion in relation to gays and lesbians. Unsworth was receptive and had a similar motion passed in the council. The move was the beginning of Gay Rights Lobby (GRL) and a new push for homosexual law reform in NSW, as well as support for a bill to incorporate homosexuality under the terms of the Anti-Discrimination Act.

Watson, in a dispute over tactics and his administrative style, fell out with GRL but that did not stop him and his fellow activists continuing to work together. After the police raid on Club 80 in 1983, it was Watson who suggested that the activists sign statutory declarations admitting to having committed buggery and to present them to the vice squad, seeking arrest. Watson was one of the first to present but the police had been forewarned and refused to make arrests.

He was a member of a delegation to premier Neville Wran in May 1984 on the morning of the introduction of his Private Members Bill to repeal the ‘‘buggery’’ provisions of the NSW Crimes Act. Watson attempted to persuade the premier to introduce an equal age of consent clause and when Wran refused, he argued for the inclusion of protections for persons between the ages of 16 and 18 years, which Wran enthusiastically agreed to. A new clause had been typed onto the bill when it reached the floor of the Legislative Assembly that day.

In 1982, the Chameleons social group had crowned Watson ‘‘Empress of Sydney’’, the first time for someone from outside the ‘‘drag’’ industry. He was proud of his only appearance in ‘‘drag’’, sporting a black velvet strapless gown. He wore the gown to the ‘‘Gay Embassy’’, a caravan that had been set up in front of the premier’s house in late 1983 as another move to push the law reform agenda. The embassy had been Watson’s idea.

Watson became aware of the problem of HIV/AIDS in 1982. He later became involved in the disputes with the Blood Bank, pointing out that the only solution to the implementation of sound public health policy relating to HIV was for the medical profession to engage in a dialogue with the gay community. He, and others, set up the AIDS Action Committee which, following federal government funding, morphed into the AIDS Council of NSW, of which Watson became the first president.

Watson later stepped down as president although he stayed on the committee. Truth to tell, he was not the greatest of administrators. He operated best as an individual activist, always sharp and on-message.

For many years Watson was also a block captain of marshals at Mardi Gras parades. In 2010, ACON awarded Watson and Wills their GLBTI Community Hero Award marking the 40th anniversary of the formal foundation of CAMP, and they were thrilled to ride up front in the 2011 Sydney parade.

After retirement from the University of Sydney, Watson became involved in the Pride History Group, Sydney’s gay and lesbian history group. He was president at the time that he died, assisting in the organisation of a history conference, set for November, on homosexual law reforms, his major life’s work. The conference will be dedicated to his memory.

Lex Watson is survived by his sister Wendy, brother-in-law Richard and nephews Nicholas and Ben and their families.

Reference

Gay History: The Photo That Changed The Face Of HIV/AIDS!

Article, Gay Interest, General Interest, History, HIV/AIDS, , , , , ,

By Savannah Cox

Published August 1, 2015

Updated July 18, 2017

Source: Time

Nearly 25 years ago, David Kirby lay on the cusp of death. Kirby, 32, had nearly reached the end of his fatal fight against HIV/AIDS when journalism student Therese Frare took the photo seen above.

In the photo, Kirby’s gaze appears vacant; he is a man resigned to a fate that his family–also broken by HIV/AIDS–just cannot bring itself to see. For many, the raw anguish radiating from this photo exemplified the tragedy of the HIV/AIDS epidemic, which at this point in time had struck millions around the world.

The photo, which was later published in Life and then used by clothing company United Colors of Benetton in an advertising campaign, is said to have changed the face of AIDS.

When published, public understanding of HIV/AIDS was minimal. Many thought the disease confined its victims to those who identified as homosexual; few considered the damage it inevitably inflicted on an AIDS victim’s family. This photo helped change that.

Frare recently sat down with Time to discuss the photo, and her memories of living through–and documenting–a span of years that devastated countless families. We provide an excerpt below:

“I started grad school at Ohio University in Athens in January 1990. Right away, I began volunteering at the Pater Noster House, an AIDS hospice in Columbus. In March I started taking photos there and got to know the staff — and one volunteer, in particular, named Peta — who were caring for David and the other patients.

On the day David died, I was visiting Peta. Some of the staff came in to get Peta so he could be with David, and he took me with him. I stayed outside David’s room, minding my own business, when David’s mom came out and told me that the family wanted me to photograph people saying their final goodbyes.

I went in and stood quietly in the corner, barely moving, watching and photographing the scene. Afterwards I knew, I absolutely knew, that something truly incredible had unfolded in that room, right in front of me.

Early on, I asked David if he minded me taking pictures, and he said, ‘That’s fine, as long as it’s not for personal profit.’ To this day I don’t take any money for the picture.

But David was an activist, and he wanted to get the word out there David Kirby was born and raised in a small town in Ohio. A gay activist in the 1980s, he learned in the late Eighties — while he was living in California and estranged from his family — that he had contracted HIV. He got in touch with his parents and asked if he could come home; he wanted, he said, to die with his family around him. The Kirbys welcomed their son back.about how devastating AIDS was to families and communities. Honestly, I think he was a lot more in tune with how important these photos might become.”

David Kirby was born and raised in a small town in Ohio. A gay activist in the 1980s, he learned in the late Eighties — while he was living in California and estranged from his family — that he had contracted HIV. He got in touch with his parents and asked if he could come home; he wanted, he said, to die with his family around him. The Kirbys welcomed their son back.

Peta, for his part, was an extraordinary (and sometimes extraordinarily difficult) character. Born Patrick Church, Peta was “half-Native American and half-White,” Frare says, “a caregiver and a client at Pater Noster, a person who rode the line between genders and one of the most amazing people I’ve ever met.”

“On the day David died, I was visiting Peta,” Frare, who today lives and works in Seattle, told LIFE. “Some of the staff came in to get Peta so he could be with David, and he took me with him. I stayed outside David’s room, minding my own business, when David’s mom came out and told me that the family wanted me to photograph people saying their final goodbyes. I went in and stood quietly in the corner, barely moving, watching and photographing the scene. Afterwards I knew, I absolutely knew, that something truly incredible had unfolded in that room, right in front of me.”

“Early on,” Frare says of her time at Pater Noster House, “I asked David if he minded me taking pictures, and he said, ‘That’s fine, as long as it’s not for personal profit.’ To this day I don’t take any money for the picture. But David was an activist, and he wanted to get the word out there about how devastating AIDS was to families and communities. Honestly, I think he was a lot more in tune with how important these photos might become.”

Frare pauses, and laughs. “At the time, I was like, Besides, who’s going to see these pictures, anyway?”

Over the past 20 years, by some estimates, as many as one billion people have seen the now-iconic Frare photograph that appeared in LIFE, as it was reproduced in hundreds of newspaper, magazine and TV stories — all over the world — focusing on the photo itself and (increasingly) on the controversies that surrounded it.

Frare’s photograph of David’s family comforting him in the hour of his death earned accolades, including a World Press Photo Award, when published in LIFE, but it became positively notorious two years later when Benetton used a colorized version of the photo in a provocative ad campaign. Individuals and groups ranging from Roman Catholics (who felt the picture mocked classical imagery of Mary cradling Christ after his crucifixion) to AIDS activists (furious at what they saw as corporate exploitation of death in order to sell T-shirts) voiced outrage. England’s high-profile AIDS charity, the Terrence Higgins Trust, called for a ban of the ad, labeling it offensive and unethical, while powerhouse fashion magazines like Elle, Vogue and Marie Claire refused to run it. Calling for a boycott of Benetton, London’s Sunday Times argued that “the only way to stop this madness is to vote with our cash.”

“We never had any reservations about allowing Benetton to use Therese’s photograph in that ad,” David Kirby’s mother, Kay, told LIFE.com. “What I objected to was everybody who put their two cents in about how outrageous they thought it was, when nobody knew anything about us, or about David. My son more or less starved to death at the end,” she said, bluntly, describing one of the grisly side effects of the disease. “We just felt it was time that people saw the truth about AIDS, and if Benetton could help in that effort, fine. That ad was the last chance for people to see David — a marker, to show that he was once here, among us.”

David Kirby passed away in April 1990, at the age of 32, not long after Frare began shooting at the hospice. But in an odd and ultimately revelatory twist, it turned out that she spent much more time with Peta, who himself was HIV-positive while caring for David, than she did with David himself. She gained renown for her devastating, compassionate picture of one young man dying of AIDS, but the photographs she made after David Kirby’s death revealed an even more complex and compelling tale.

Frare photographed Peta over the course of two years, until he, too, died of AIDS in the fall of 1992.

“Peta was an incredible person,” Frare says. Twenty years on, the affection in her voice is palpable. “He was dealing with all sorts of dualities in his life — he was half-Native American and half-White, a caregiver and a client at Pater Noster, a person who rode the line between genders, all of that — but he was also very, very strong.”

As Peta’s health deteriorated in early 1992 — as his HIV-positive status transitioned to AIDS — the Kirbys began to care for him, in much the same way that Peta had cared for their son in the final months of his life. Peta had comforted David; spoken to him; held him; tried to relieve his pain and loneliness through simple human contact — and the Kirbys resolved to do the same for Peta, to be there for him as his strength and his vitality faded.

Kay Kirby told LIFE.com that she “made up my mind when David was dying and Peta was helping to care for him, that when Peta’s time came — and we all knew it would come — that we would care for him. There was never any question. We were going to take care of Peta. That was that.

“For a while there,” Kay remembers, “I took care of Peta as often as I could. It was hard, because we couldn’t afford to be there all the time. But Bill would come in on weekends and we did the best we could in the short time we had.”

Kay describes Peta, as his condition worsened in late 1991 and 1992, as a “very difficult patient. He was very clear and vocal about what he wanted, and when he wanted it. But during all the time we cared for him, I can only recall once when he yelled at me. I yelled right back at him — he knew I was not going to let him get away with that sort of behavior — and we went on from there.”

Bill and Kay Kirby were, in effect, the house parents for the home where Peta spent his last months.

“My husband and I were hurt by the way David was treated in the small country hospital near our home where he spent time after coming back to Ohio,” Kay Kirby said. “Even the person who handed out menus refused to let David hold one [for fear of infection]. She would read out the meals to him from the doorway. We told ourselves that we would help other people with AIDS avoid all that, and we tried to make sure that Peta never went through it.”

“I had worked for newspapers for about 12 years already when I went to grad school,” Therese Frare says, “and was very interested in covering AIDS by the time I got to Columbus. Of course, it was difficult to find a community of people with HIV and AIDS willing to be photographed back then, but when I was given the okay to take pictures at Pater Noster I knew I was doing something that was important — important to me, at least. I never believed that it would lead to being published in LIFE, or winning awards, or being involved in anything controversial — certainly nothing as epic as the Benetton controversy. In the end, the picture of David became the one image that was seen around the world, but there was so much more that I had tried to document with Peta, and the Kirbys and the other people at Pater Noster. And all of that sort of got lost, and forgotten.”

Lost and forgotten — or, at the very least, utterly overshadowed — until LIFE.com contacted Frare, and asked her where the photo of David Kirby came from.

“You know, at the time the Benetton ad was running, and the controversy over their use of my picture of David was really raging, I was falling apart,” Frare says. “I was falling to pieces. But Bill Kirby told me something I never forgot. He said, ‘Listen, Therese. Benetton didn’t use us, or exploit us. We used them. Because of them, your photo was seen all over the world, and that’s exactly what David wanted.’ And I just held on to that.”

After the Benetton controversy finally subsided, Therese Frare went on to other work, other photography, freelancing from Seattle for the New York Times, major magazines and other outlets. While the world has become more familiar with HIV and AIDS in the intervening years, Frare’s photograph went a long way toward dispelling some of the fear and, at times, willful ignorance that had accompanied any mention of the disease. Barb Cordle, volunteer director at Pater Noster when David Kirby was there, once said that Frare’s famous photo “has done more to soften people’s hearts on AIDS than any other I have ever seen. You can’t look at that picture and hate a person with AIDS. You just can’t.”

References

Sacrilege: Living HIV Outside The Square!

Article, Autobiography, Gay Interest, HIV/AIDS, , , , , , , ,

“Sacrilege” may seem like a strange word to use in relationship to ones life. Its religious connotation is “the violation or profanation of anything sacred or held sacred” thus by a very loose expansion of the meaning – a human life, as it is, in many respects, regarded as sacred. Stretching definitions even further – and many would not be surprised that I don’t take it literally – infecting it with HIV could be considered a sacrilege, be it intentional or unintentional. The sacred has been violated! Also, as a HIV+ man, it is expected that I will follow a set of “rules” as dictated by various community groups, doctors and specialists! To totally ignore the expected, and go off down your own path would be considered by many to be sacrilege!

I can’t contemplate continuing to live with HIV without viewing it within the framework of my life! No war is without its battles, without its dark times, yet still seeing the light at the end of the tunnel! If I had to use a word to describe myself, belligerant comes straight to mind – but then I think to myself “That’s a bit harsh!”. Okay…cantankerous is one that has been used by those close to me, so that’s sort of acceptable, and it’s true! Curmudgeonly… a word I love, but I’m not really surly enough! So I’ll just stick with stubborn! I could claim that it’s a Capricornian trait, but it goes deeper than that.

At 12-years-of-age, my stubborn streak was already settling in. Though unrecognised by me at the time, it was a survival mechanism that was to serve me well for most of my life. It is only when I look back to 1965, that I realise what a testing ground it was: my mother left my father; a bitch of a housekeeper who was to forever change our family dynamics; and my father jumping over The Gap with Kevin, my brother – resulting in my brothers death – would have sent a less resilient person into dark depths that they may never have risen from! Considering the lack of psychological & emotional support available at that time, to have come out of that year relatively unscathed had to show a stoicism way beyond that normally expected from one so young. By digging my heels in, ignoring all the negativity around me, and just “getting on with it” – a philosophy I still embrace – I was to set in place a mental tenacity that was to impact my life for decades to come!

There was no love lost between my father & myself! Even prior to Kevin’s death, I had seen – and felt –  a violent streak in his nature; almost a need to punish those who had a life contrary to his. He could be a right royal cunt! The only way I could establish my own independence – which had flowered rapidly after Kev’s death – was open defiance! He told me not to smoke…so I smoked; not to drink…so I drank; to get a trade…I went in every direction but; and to get my hair cut…I left it to grow – despite a threat, after an argument about it, to “knock my block off”! He even denied me a 21st birthday celebration, because he had been at war when his fell due…I organised it myself. My grandmother left me a small inheritance, and just after my 21st, I moved out of home, into my own apartment. After he remarried and moved to Vincentia (on the south coast of NSW), we had little contact. After his suicide via carbon monoxide poisoning in his car in 1978, I never cried a single tear – but just let out a massive sigh of relief! I was free! As the ultimate act of a true prick, he left me nothing in his will – it all went to my step-family! Just to show that they were all tarred with the same brush, directly after his death his sisters indulged themselves in a game of telephone harrassment against my step-mother. I was glad to walk away from them all!

As soon as the old man died, I came out! It is the one time my usual defiance was kept capped. I had seen what he wss capable of with my brother, and my survival instinct whispered to me to be  quiet about this issue. Again, I had witnessed him & his mates yelling “poofter” out of the car window to some poor guy who did nothing more than wear a pink shirt! As I said – they were pricks! Stubbornness does not necessarily equal a death wish! Then, having stepped out of the closet, I megaphoned my life choice to all and sundry, including my employees. No one seemed particularly surprised! There were some in my workplace who were not impressed with my sexual preferences, and made no secret of it! My pure indifference to them was reward enough. My decision to desert the security of a regular job had nothing to do with my detractors…it was based purely on a desire to break free of a life I wanted to leave behind. But the curve balls were to keep coming, with no inkling at that time of the odd parallel path that both being gay, and being HIV+ were going to lead me down!


Even as I was coming out in Melbourne in 1980, snippets about a lethal cancer, that was killing gay men who frequented the saunas in the USA, were appearing in the local press here. I read them, and like many others, though not panicking, was left with a feeling of unease. That unease turned to immense consternation over the next couple of years, as the reports became more alarmist, and HIV crossed the ocean to our shores. By the time they developed a test in 1985, I for one was already stacking the odds – and not in my favour! In retrospect, this may have been a defence mechanism against coming up HIV+…that if I did, I was already prepared for it, and if I didn’t I could just breath a sigh of relief. The former proved to be true!

Back in the day, there was a severe lack of counselling, and given the sheer volume of testing results coming in at that time, was cursory at its best. When I went to get my result – and I don’t know why I made the presumption I did – the positive result was not a shock. These were strange (ethereal?) times, and for those of us admitting to our – then – death sentence, it was almost like belonging to a select club.

There was a two year window given at that time, between diagnosis and the advent of AIDS, leading, so they thought, to an inevitable death. Some didn’t make it to the window period, and my first friend, Andrew Todd, died at the end of 1986. I made it to the two year point…and was still very healthy. By then, the window for those diagnosed in 1985 had been expanded to five years, so the waiting game for many of us continued.  Up to 1990 is a very convoluted journey, and I don’t want to rehash history that has already been covered in many writings, and is really outside the parameters of this article. I decided to make this a useful period, and did a number of trials. It was better than just sitting around and waiting. This was a time when I made my one bad decision regarding my healthcare – I allowed my doctor to – after a najor ethical battle with her – to put me onto AZT! There has been much written about AZT, and its history as a drug…which was not exclusively formulated for use with HIV. I am not a conspiracy theorist, but my thinking on HIV has always been a bit radical, and I, along with others, gravitate to the thinking that HIV and AIDS – despite our use of them as co-joined conditions – are separate illnesses, and HIV doesn’t necessarily lead to AIDS, but AIDS as an independent condition, brought about by the deterioration of the immune system. 

So, I had a diagnosis of HIV, with no related conditions that would have rated a diagnosis of AIDS. Even with a CD4 count on the decline, I still had good health – which admittedly may have been a lot better if I wasn’t knocking myself around by chain-smoking, and chronic abuse of alcohol – until…I started AZT! Many of those still around from that time will acknowledge that the decline in their health status is directly parallel to starting AZT. It wasn’t nicknamed “human Rat-Sac”for nothing. It’s negative affects from then up until now are also well documented. Damaged nerves, liver & kidney problems, the leaching of calcium from bones, and other neurological problems can all be traced back to AZT usage. I wish I had stuck by my guns, and refused to use it! There is no evidence that it saved one single life. I wouldn’t have refused trestment with other drugs that came along shortly after – I didn’t have a suicide wish – but I have no doubt that if I had refused AZT, some ongoing problems I have now would not have happened. I have an undisguised hate of Big Pharma, and its tactics, and lack of ethics where it comes to flogging a drug, and how they went about flogging this incredibly toxic drug to a desperate and unsuspecting demographic is truly horrifying – more on this shortly.

So, dispite heavy smoking, alcohol abuse, long work hours, and a shit diet…I made it to 1990, and with my health still okay. I won’t say I was unscathed, as the relentless list of those who died over this time, with many more to come, was physically, mentally, and emotionally destructive. I am by nature – and experience – a stoic in the face of death. I accept the reality, and inevitability of it – but any sign of the existance of God in this obliteration was missing – no just, loving God would ever allow this! My conversion to Atheism was complete. However, the combination of all that was happening was starting to wear me down, and encountering on-the-job bullying by an Area Manager brought about my decision to leave the workforce in 1993, and go onto disability, and get a housing subsidy. It was a forgone conclusion back then that this was the road to take because – after all – none of us would survive for all that long. At this stage, under the most positive of thinking, I gave myself two more years. 

I actually got to mid-1996 before it all started to come undone. I have written about the circumstances surrounding all the events that happened at this stage, so won’t repeat them here, but will give you an intimate insight into my thinking on my situation when I was finally admitted to Prince Henry Hospital in June, 1996. Given that I was already close to death when admitted, with a plethora of conditions that really should have killed me earlier, and that I really thought I would never leave there any other way than via a wooden box gives a good indication of how serious things were. It was in Mark’s Pavilion there that my stoicism, my acceptance of reality, possibly should have been tested, but instead gave me a calmness, an acceptance of my own potential death that I had pondered about prior to this. I was chronically ill, I was tired and in some respects, if other factors hadn’t intervened, death just seemed like such a pleasant, restful reality, leaving all that was happening behind, joining all those that I had loved and lost over the last 10 years. It was an acceptance of death that I wasn’t expecting to be quite so complete, so easy, so without fear. 

But I picked my moment, didn’t I! Big changes were happening in the treatment of AIDS, and shortly after being admitted, not going down the road of death, that I expected to go down, I walked – well, taxied – out of Prince Henry. I exited that taxi into a world that was in no way prepared for the living dead of HIV. If I ever thought my battles were behind me, I could not have been more wrong. The next couple of years – a long period of recuperation – were intense. There was a seemingly neverending period of specialists, doctors, clinics, pharmacy, counselling, peer support groups, drug compliance groups, massive – and I mean massive – amounts of medication, side effects, dental work, anxiety and panic attacks, and drug trials. It was a time where one wanted to initiate great change in the direction of ones life  – with no one there to assist. Change had to be fought for, had to be forced. All these community groups gathering money and prestige, sitting in meetings and forums, listening to the likes of me yelling about what we needed…and just turning deaf ears! It was a frusteating period where everything was years behind where it needed to be, and if you wanted to get on with your life without being trapped in the system, you had to do it under your own steam! So I did!

Some volunterr work, some work in the community sector, a flowering writing career that demanded and exposed…when I eas “allowed” as one didn’t question the system – led to a brief period of full-time work – that didn’t help my health at all – then onto university & TAFE to experience at last that which gad been denied me in my youth. This led to an interesting period of experiences, from spending 12 years talking about the HIV experience through the Posituve Speakers Bureau, to 15 years writing for “Taljabout” magazine and various other publications, starting several businesses – the most recent of which was destroyed by the GFC, to where I am now – happy, balanced, and reasonably fulfilled.

However, the last few years haven’t been without its challenges, and my mental tenacity, combined with a fairly laud-back approach to life, have seen me get through things without any apparent negativity. I do health care on my own terms these days, because if one just relies on mrdico’s, one would rattle like a pill bottle. I want less pills, not more! About 15 years ago, I halved my HIV medications. I have been waiting for some red-faced, fuming doctor to lecture me about it (has no one realised how rarely I get scripts?) but no one ever has. In the interim, my blood readings get better and better, with CD4s on the rise, and an ongoing undetectable viral load. Okay, I no longer smoke – gave that up in ‘96, drink bugger all, have turned vegetarian, and exercise daily, but nothing else. Big Pharma be fucked! Your drug resistance tests – a farce! You just don’t want people on old drugs! Over-prescribing? You bet you do…big time! I wouldn’t trust you as far as ai could kick you! 

Have I mentioned my shit vision? Whoops…overlooked that. Blind in one eye thanks to CMV (also covered in articles on my blog), and almost blind in the other. The most major decision over the last couple of years? Having my blind eye removed voluntarily, and replaced with a prosthetic. Does it stop me getting around? Not fucking likely! I might be slow, but I get there! I have a white cane (laughingly called my whacking stick), but rarely use it. I walk the dogs, do the shopping, get to gym! It might be done with a slight feeling of nervousness, but it gets done.

I don’t hold any grudges. What has been, has been! In a way, I thank my father for the rough younger years. It gave me a set of survival tools that have served ne well – and still do – throughout my life. Maybe I was born in an auspicious astrological period, or maybe my natural survival instincts are genetic, endowing me with stoicism and mental tenacity! Whatever it is, it has seen me through nicely! Life is to be enjoyed, and despite the occasional downs, it should be lived to its fullest. Just step outside that square, and do it on your own terms!

Tim Alderman (©2017)

Australian Gay History: Paul Dexter & The Gay Army

Article, Gay Interest, History, HIV/AIDS, , ,


1983. Gay Politics: Sydney’s Mysterious (and Dangerous) ‘Gay Army’Posted on July 21, 2014 by Colin Clews

Anyone who was around in the early 80s will remember the media’s hysterical response to AIDS and the ease with which it attributed it to gay men. It wasn’t labelled ‘the gay plague’ or ‘gay bug’ out of sympathy for us.
So it was unsurprising that, in these hostile times, gay community organisations were doing everything they could to put across a true picture of the emerging crisis. As attacks on gay men increased dramatically in light of perceptions that we had ’caused’ AIDS, an intelligent and cautious approach was the order of the day.
Or, alternatively, you could get yourself into the headlines and onto TV by claiming to be the leader of a non-existent gay organisation and making outrageous claims. Step forward Paul Dexter, self-proclaimed head of ‘the Gay Army’ in Sydney, an organisation that he claimed “represents the gay community more than others”.
Gay Army Gay ConspiracyIn May 1983 he appeared as ‘the gay community spokesperson’ on a Channel 9 report on AIDS. His credentials were never provided nor was it explained why his views were more important that an organisation like, say, the Gay Counselling Service. Indeed, no one even bothered to ask for evidence that an organisation with the ridiculous name of ‘The Gay Army’ even existed. Nonetheless, he was up there with leading AIDS doctors and commentators like Larry Kramer.
In June 1983 the Sydney Morning Herald – a newspaper that really should have known a lot better – quoted his claim that “left-wing elements” were responsible for the outcry against AIDS publicity. They didn’t even bother to explain just what that ridiculous statement actually meant.
And yet, in spite of the obvious absurdity of this man, his fictitious organisation and his groundless claims, the Herald turned to him again the following year. Under the headline Gay group slates AIDS statement, Dexter – now “official spokesman for the Gay Army” – declared that AIDS was far more infectious than health experts claimed. “The advertisement suggests that AIDS cannot be spread by sneezing, coughing, breathing or mosquitoes but according to Mr Dexter, medical experts can give no scientific assurance of this.”
Whilst Dexter was quick to challenge medical experts on their authority, he made no attempt to justify his own. And, yet again, no one asked him for any, nor evidence that his Gay Army actually existed.
But, yet again, this was to be a case of not letting the facts get in the way of a good story. Dexter, it seemed, was happy to say anything to stay in the spotlight and the media were more than happy to report it. Take, for example, another headline Call for homosexual to spot gay clients, in which the “spokesman for the Gay Army” argued that “A homosexual should be behind the counter of the Red Cross Bank to spot any gay blood donors…”
The entire article was farcical as Dexter claimed that he had seen a gay man give blood while he himself was in the Blood Bank (“Of course, I didn’t give blood…”). Dexter knew he was homosexual because “He had effeminate gestures, was wearing a bracelet and his key ring was in his right hand pocket – which is a sign of being gay.”
His statements would be hysterically funny is they didn’t have such serious consequences. After stating, “Of course, you wouldn’t be able to pick out every gay but a homosexual would have a far better chance”, he went on to reinforce the conspiracy theory that HIV+ gay men were deliberately infecting the blood supplies: “A homosexual behind the counter would also deter any resentful homosexuals from giving blood.”
It’s hard to say who is the most irresponsible here; Dexter for his blind self-promotion or the media for carrying stories about ‘conspiracies’ and health experts concealing the true facts when they didn’t even bother to do the most basic check on Dexter’s own credentials. When it comes down to it, they both share a huge amount of shame and blame.

In 1985, Channel 10 did a report titled “The Truth About AIDS in Australia” (https://youtu.be/UKiiY5JUUvU). The witch-hunt was now in full swing. Popular 2GB talj-back host Mike Carlton, joined others in suggesting that gays were deliberately donating contaminated blood out of spite! The 10 report investigated, and lent support to, accusations that gay men were deligerately spreading AIDS! The charge was made in an anonymous letter sent to a New South Wales parliamentary committee inquiring into prostitution. The author suggested that heterosexuals who had been infected vua blood transfusions were innocent victims of an “evil conspiracy” in which homosexual activists deliberately infected blood supplies, so that their calls for government funding to fund AIDS would be acred on. Furtgermore, gays were knowingly infecting other men in their community to “get even” with old boyfriends because “the gay community is notoriously bitchy” .

The letters author, a “King’s Cross Homosexual” was also angry that a “fringe group of radical homosexuals” – the NSW AIDS Action Committee led by Sydney academic Lex Watson – was claiming to speak on gehalf of the entire gay community. “They are establishing paper empires to get government funds and couldn’t care a stuff about their gay brothers and sisters” he wrote. While the Network 10 program acknowledged that it was impossible to prove these claims, it remarkably stated that it could ” prove that the AIDS blood plan was seriiysly considered” because homosexuals in America gad contemplated such an act of political terrorism, and the “intimate links across the Pacific ensured the American plan became pillow talk down under”. The report did not reveal how most American gay men regarded this terrorist actio, nor explain why Australian homosexuals would contemplate the plan when the Commonwealth and the State governments were already responding to AIDS with more urgency than politicians in the Unired States had shown during the first three years of the AIDS epidemic.

The claims made in the letter were extraordinarily similar submissions nade to the mainstream and gay press by Paul Dexter, self-proclaimed leader of the Gay Army, which, as far as other gay men were concerned, consisted only of himself! Those who knew of his antagonism towards the AIDS Action Committee, and those who had begun to view the program cynically, would not have been surprised to see Dexter soon introduced as a “spokeman for the gay community” to confirm that a fringe group of radical gays were indeed spreading AIDS. As an “unbiased” member of the gay community, he supposedly served the purpose of demonstrating that homophobia was not the basis for the program’s investigation into the “evil conspiracy”. To many Darlinghurst gay men in the audience, hiwever, his presence only confirmed their doubts about the authenticity of the letter. 

It is interesting yo note that when a nan considered by Jenny Ross to be an inappropriate representative of the hemophilia community was interviewed by another television station, his comments were omitted from the program that went to air at the request of the Harmpholia Foundation. Despite the complaints of the AIDS Action Committee that Paul Dexter did not represent the general views of homosexual community, and that he was predisposed to making spiteful comments about some of its members, it was extended no such curtesy. Rather, Network Ten neglected to examine Dexter’s personal & political motives for accusing radical homosexuals of donating blood infused with HIV , just as the press had failed to challenge the factual basis of the doctor’s claims. Presumable, the print and electronic media would have been more thorough in their search and selection of their witnesses if they were to accuse National Party politicians or religious leaders into spiteful murder. Moreover, one can be certain that a public outcry would immediately follow if such accusations were made.

Paul Dexter was a small blip in the early days of HIV in Australia, but by setting himself as a self-appointed spokesman on the epidemic, and managing to gain as much exposure as he did, he created a lot of controversy, misinformation, and bias which in turn created its own problems. It is now difficult to even find any information on him…though like all bad history, he should not be forgotten! 

Tim Alderman (2017)

References

Learning to Trusr: Australian Responses to AIDS – Google Books https://books.google.com.au/books?id=1trSx2c_pEYC&pg=PA62&lpg=PA62&dq=paul+dexter+%26+the+gay+army&source=bl&ots=kyGf7ZjoJ9&sig=HaTIJYsl4eDZAyjNRCxgzB-QB7I&hl=en&sa=X&ved=0ahUKEwjTs7TsnrLVAhUPNpQKHUuaAhIQ6AEIIDAB#v=onepage&q=paul%20dexter%20%26%20the%20gay%20army&f=false

    Viral Games!

    Article, Autobiography, Gay Interest, Health Information, HIV/AIDS, , , ,

    Originally published in “Talkabout”, September 1999.

    In May 1999 I had one of the scariest HIV-related experiences I have had since my encounters with CMV in 1996! I literally, for a brief period of time, lost control of my feet. Already having problems with peripheral neuropathy, this just added to the incertainty and conjecture surrounding the causes. Initially, I couldn’t walk a steaight line up a footpath, but staggered from left to right with no control whatsoever. It got so severe that I eventually had to resort to using a walking stick to get around! Cassie Workman was at a loss! Thyroid, cortisol, B12, folate, a CT scan, Gallium scan all done to negative results. It took a further MRI and lumbar puncture test to reveal that at some stage during my transition from one drug combination to another, the virus had crossed the blood/brain barrier and got into my brain! By the time it was discovered, the new combination had kicked in, and problem resolved itself. It was a scare I could have done without, as the symptoms were also indicative of some very serious – and deadly – brain disorders! HIV in those days was good at throwing curve balls!



      The moral to this story is to never brag! I had been telling a work colleague of a rise in my weight to over 70 kgs, a record weight for me, and a record I was damn proud of. Within a few days of this, however, chaos had set in, and the treasured weight was going to have to be fought for.

    This bloody virus just never leaves you alone! I stare at the magnetic scan images in my hand, and admire just how sneaky it can be. The pale grey ‘clouds’ that drift over the image of my brain are evidence of its brief visitation, the disorientation and fear it caused, all too recent to be forgotten.


     It started so simply. As I have mentioned in other articles, I returned to work just 18 months ago. My health, including T-cells and viral load, had been excellent for this period of time. I guess I may have become a bit complacent, thinking good health was something I could now take for granted. As has also been mentioned in other articles, I have severe peripheral neuropathy in my feet. It is slowly progressing, and is about half way along my feet. When the staggering started, my immediate thought was that it was just another phase in the progression of the PN. I could not walk a straight line, and when walking up the street, staggered quite visibly from one side of the footpath to the other. At the time this was happening, I mentioned to people that I wasn’t feeling ‘right’, I couldn’t put a finger on what it was, it was just a general feeling that things weren’t as they are supposed to be. I was going through some changes to my combination therapy also at this time, and thought that may have had something to do with it. Well, it did! But not in the way I expected.

    The next phase of the illness consisted of a feeling of chronic lethargy. It became an effort not just to get up in the morning, but to get dressed, and to motivate myself to get up the street to get to work. I lost my appetite, and libido. Then I started to drift off to sleep on the bus in the morning, this symptom extending to falling asleep at home as soon as I sat in front of the TV, both these things not being normal for me. It wasn’t until I nodded off to sleep in front of the computer at work that I realised something was going seriously wrong. 

    A series of tests was started. I had iron, folate, and B12 tests. They were all normal. I went to Albion St Clinic and had a test for a disease called Addisons (the symptoms for this disease were identical to what I had), and it also came back negative. I went and had Gallium and CT scans, and nothing showed up. By this stage, my walking had deteriorated to such an extent that I was relying on a walking stick to get around. It was thought I may have had bio-chemical depression brought about by returning to work and suddenly finding myself with the prospect of ongoing life, so I was, reluctantly, prescribed anti-depressants. My weight dropped to 58 kgs, and I literally had no appetite at all. My partner and I had up until then a very healthy sex life, and this dropped away (quite rapidly) to nothing. He started to get very concerned, though managing to hide it. Going out anywhere with me, especially with the walking stick, was a long ordeal. The only advantage to it was that I always got a seat on the bus.


    My doctor eventually ran out of possible causes for my condition, and made an appointment for me to see a neurologist at St. Vincent’s Clinic. He put me through a long consultation, with a series of tests to check reflexes and responsiveness. During the consult, he asked me to do a number of simple walking steps like heel-to-toe, and I was unable to do them without losing my balance. His diagnosis wasn’t hopeful, telling me that it could have been one of several very nasty diseases, including one called PML (Progressive Multifocal Leukoencephalopathy). I don’t actually know what it is, but the look on his face said all that had to be said. There was a possibility of undetected Syphilis infection from years ago, but a test soon cancelled that option out. He wanted me to have a lumbar puncture, but rang me the next day to say I was to have a magnetic scan first, just to see if anything turned up. These scans are more thorough than CT scans, and more likely to show up problems.

    If you are claustrophobic, don’t even consider these scans. You have to stick your whole head inside this small cylinder, with ear- plugs in, and foam wedges to hold you steady. The machine itself makes a noise like a pneumatic drill. I took one look at it, and said ‘no way unless you knock me out’. They did!

    As mysteriously as all this started, it began to reverse. I returned to the neurologist a week and a half later, he being as surprised as I was to see I was walking again. He had received the scans, and they showed evidence of HIV infection on the brain, quite visible when viewing them.


    To say this frightened the shit out of me is an under-statement. I have always been very good with my treatments, and consider myself about 95% compliant, which is pretty good, considering how long I have been popping pills and, at times, the quantity I have had to take. Somehow, the virus had used an opportune moment between combinations to cross the blood/brain barrier. Everyone on combinations take at least one drug to prevent this happening, so it shows you how persistent the virus can be. It doesn’t so much hide as sneak around, looking for opportunities to invade various parts of us that are not so well protected. If I ever thought there was an argument not to take drug holidays, this is it! What damage it could have done to my brain if left unchecked horrifies me, especially the prospect of Dementia. They seem to think that the anti-virals brought it under control, and for my sake I would like to think the same.i

    A month after all this and I am back to normal – appetite, energy levels, libido, the whole works. I hope to return to work within the next month. It looks as though I will still have to undergo a lumbar puncture (they’ll have to knock me out for this one, too!), as they want to know what drugs I have become resistant to. Over the period of the illness my viral load did a rise, the first in almost two years. The frightening part is that within one week, it rose from 3000 to 19000. It is now back under control.

    I have lived a long time with this virus Almost all my time as an active gay man has been spent as HIV+. I have put up with, and survived, a number of HIV related illnesses. I intend at this time to live a lot longer with it. If drugs and hope are the ways and means I will have to use to follow this intention through, then that is just what I will do.     

    Tim Alderman ©2000 (Revised 2017)

    An Eye For An Eye – Life After Cytomegalovirus Retinitis (CMV Retinitis).

    Article, Autobiography, Gay Interest, General Interest, Health Information, History, HIV/AIDS, , , ,

    This article, recently resurrected, was originally written in 2012, as I sat in the loungeroom at Ashgrove (Brisbane) after a panic attack drove me from my bed at 5am. I have revised & reedited the piece to cover the period between then and now. The original was published in “Talkabout” in 2012.


    I shouldn’t actually be alive! And if it had been any time other than when it was – 1996 – that would have been the outcome. However, timing and medicine are everything, or so it seemed in that period of huge leaps in HIV care and treatment. As a 42-year-old HIV+ gay man who was admitted to Prince Henry Hospital (now closed) at La Perouse in Sydney, weighing in at 48kg, with chronic CMV retinitis, chronic anemia, chronic candida and 10 CD4’s I guess you could say I wasn’t well, and the truth be known my thoughts were more attuned to the after-life than being given a future. So, blood transfusions happened, heavy dosing of drugs happened (curtesy of my current regimen) and gancyclovir injections into the eyes happened – but perhaps most importantl…the new protease inhibitors happened and in combination with my other drugs created miracles. My severely depleted CD4 count did a small, slow rise, and my 100,000 viral load slowlt dropped to 10,000. Though still very weak and sick, I walked out of Prince Henry a couple of weeks later, then spent the next 18 months getting my health – physical & mental – back on track.

    At this stage I could crap on endlessly about all the strategies that I used, the anabolic steroid therapy to treat Wasting Syndrome, the fears and uncertainties, the sheer strength of will needed to reconnect with life, not to mention the huge mental shift that drove my life off into uncharted territory and resulted in the man I am today. Blah, blah, blah!So instead of boring you with all that, I want to concentrate on the one aspect of all this that is still impacting my life today – the CMV retinitis.

    Say CMV to most people these days and you will just get a blank look. It is an insidious disease, and one that was greatly feared in the era of rampaging AIDS infections. It is a virus that pretty well everyone has present in their body, but is usually only activated in immune-suppressed people. In its retinitis form it attacks the retina, and can spread to the macula by slowly destroying the cells. It is painless, though can be evidenced by a greying of vision and the appearance of floaters. If untreated it will eventually lead to blindness. By the time it was detected in my eyes a lot of damage had already been done, and I was aggressively treated with intraocular injections of gancyclovir…yes, that does mean injections directly into the eye. What fun! At the time this was going on, they were looking for guinea pigs to trial gancyclovir implants – called Vitrasert implants – in each eye. I volunteered, had two operations to insert them, then found that the 4% chance of developing cataracts turned out to be 100%, so back for another two operations to remove them, and replace the lenses, plus some laser work. The end result of all these operations and expectations for me was that they hadn’t caught it in time in the left eye, and despite a tiny sliver of vision I was effectively blind in that eye. Despite a lot of scar tissue, the majority of sight was saved in the right eye at that time.

    It takes ages to adapt to changed vision, especially when one eye is effectively blind, so over the next 12 months I became accustomed to having accidents, including several falls thanks to tree roots bulging through pavements and bus seats that were just out of sight range. It gets to a point where you no longer get embarrassed. Both eyes appeared to stabilise, I adjusted to the changed vision and in some respects life went on. Apart from the falling over, other negative issues included an avoidance of crowds and busy places, and 3-D cinema was a total waste of time. You do adapt strategies, but it is not yourself that you need to worry about, but other people. There have been a number of occasions where I thought a tee-shirt emblazoned with the words “Vision-Impaired Person” would have been handy.

    Vitrasert Implant (https://www.retinalphysician.com/issues/2014/september-2014/coding-q-amp;a)
    It was 2008 before I had any further problems, and that was with my blind eye. It developed what I thought was a grain-of-sand-in-the-eye irritation, so off to the ophthalmologist at RPA hospital, who then passed me onto the Sydney Eye Hospital. When specialists start passing you on to other baffled looking specialists you know you have a problem! Evidently the blind eye didn’t realise it was blind, and decided to start creating a new system of blood supply to the eye, which in turn was in the wrong places as well as increasing the pressure in the eye. There was a new injectable drug around called Avastin which cuts off the blood supply to cancer tumours, and it was decided to inject this into the eye to stop the new blood system developing. So, off for another intraocular injection. It did the job, but I was also told that the interior of the eye was collapsing, and that in time it would change colour. Oh joy of joys. Over the next 18 months it changed from a normal looking eye that just had no vision to this oddly coloured eye which made many people think I had two different coloured eyes (a genetic variance). And this is how it still looked until 2014.

    However, this is good old HIV we are dealing with here, and it doesn’t like being ignored. Just as you think the worst of your problems are over it throws another bit of shit at you. I had been told previously that with the amount of scar tissue present in my good eye that there was a real chance of the retina detaching. So, shortly after moving to Brisbane, when the good eye started swapping between clear and blurred vision and finally settling on blurred, I knew something was wrong. A visit to A&E (on ANZAC day 2012) resulted in no clear result, so off to the RBH Eye Clinic the following day. The retina was off, and floating around, and there was a scare, with them thinking the CMV had reactivated…hard to believe seeing as I wasn’t immune suppressed, had a high CD4 count and an undetectable viral load – and another scare when they realised that I had highly toxic implants in my eyes (though long inactive, as they discovered). Instead of collecting some eye drops and toddling back home as I expected, I was put straight into a ward, and within 24 hours was in the operating theatre. A bad recovery room experience with an Asian Nurse Ratchet, whereby they weren’t informed that I was blind in my left eye, and leaving me to come-to in total blackness, occasioning a major panic attack is something I could have done without. The ongoing problems of anxiety and panic attacks (and this article being written at 5am) is something I am slowly getting over thanks to counselling and a letter to RBH formally requesting they look at the procedures and communication in the recovery room. My vision is now officially classified as blind. Glasses help a bit, but it is now a matter of me adapting to a low-vision life and devising some new strategies to deal with it. I can still read, though the font is huge, obviously I can still write though currently using huge fonts to do it. In 2013 I attended Southbank Institute of Technology to do the Certificate III in Fitness. I am not only the first 59yo to do the Certificate…I am the first severely vision-impaired person to do it. Threw TAFE into a panic, as they had to develop strategies to deal with me, and make sure tutors were on-board and up to speed. As much as I loved the experience, and the youngsters around me were absolutely wonderful, I came to realise that I was way too slow at moving around a gym to be a PT, so went no further. Atthe same time, I had done white cane training, and though finding the canes handy in certain circumstances – like whacking my way through the city – it is, as a general rule, more a hindrance than a help. However, it is great for getting seats on public transport!

    In early 2015, after ongoing problems with my blind eye, and not wanting to go on infinitum with drops, I opted to have my blind eye removed. Unlike the old days, they now put an artificial ball into the socket, and attach the muscles to it, so it moves like a real eye. I had a prosthetic fitted, and to date no one has detected that it’s artificial.
    However, my vision in general is now very severely impaired. Every trip outside my front door is a potential suicide mission – not to nention ducking and weaving around two Jack Russell Terriers at home…but I still challenge the risks, and get out and about under my own steam as often as possible. If anyone wants to date me…I’m a high maintenance date these days. Being night blind, I need to be guided around, and I move very slowly and cautiously. However, it has been pointed out to me that I can still spot a hot butt from some distance away! Some Gay traits over-ride everything!

    As for the future… who knows. I am trying to develop the “living in the moment” way of my dogs by just taking each day as it comes. I have had a lot of help and support, and despite whatever may happen that will always be there.


    As they say, there are none so blind as those who will not see! I still walk my dogs every morning, I still read & write, still do my genealogy and my DJ mixes, go to gym, do the shopping, get around to local restaurants and cafes so I can’t complain. Life should always be an empowering experience, and the best way to achieve that is to own your disabilities – instead of letting both HIV and disabilities rule your life…YOU rule your HIV and disabilities! That is the road to freedom!


    Tim Alderman.

    Copyright 2012 © (Revised 2017)