Tag Archives: HIV/AIDS

Wrong Turns…The Person HIV Created

Wrong Turns

How often have you asked yourself “what the hell am I doing with my life?”. How often have you sat at work and wondered,”’why am I doing this?”. I’ve found that as I get older, it’s a question that rears its ugly head more often. You ponder the missed opportunities, the wasted time in jobs you hated; you envy those who are happily going about their chosen careers, fulfilling ambitions, doing what they enjoy.

I sometimes feel I’ve lived a life of quiet desperation. Most of my work life has been for nothing. I’ve nearly always been unhappy in my job choices…despite being very good at it…and developed the I’m-just-doing-it-for-the-pay-packet mentality. Sure, my latter years have been a lot more fulfilling, but the operative word is ‘latter’.

I wasn’t offered a lot of opportunities to select a fulfilling career. I left school at 15, in 1969, with the School Certificate under my belt and no idea what I wanted to do. According to my father and his family, I needed to get myself a “career”. By ‘career’, they meant becoming a plumber, electrician, carpenter or any of the associated trades. Considering the current sexy status attributed to tradies, I’m wondering if it may not have been a bad choice. I loved working with food and even when I was at school used to create my own recipes. However, it was the wrong time to be a foodie. My father suggested becoming a hospital cook (and tried to get me into that area), but the prospect of being stuck in a hospital kitchen for years was daunting. Let’s face it, hospitals are not prestige culinary establishments, especially in the ’70s. I begged out of it, though despite the severe lack of a restaurant culture at that time, the TAFE course may have been of benefit – at least I would have got a grounding in the basics. I had an uncle who was a pastry cook and he helped get me work experience at a bakery (Isoms) in Campsie. Now, if I hadn’t been 16 years old, if I hadn’t had to get up at five every morning and if I hadn’t had washing up and measuring ingredients as the full account of my day, maybe I would have stuck with it. Four months and I was out.

I spent the next 12 months (A) as a presser at a dry cleaning outlet and (B) doing repetitive work at a battery factory, where at the age of 16 I was getting adult wages due to the high turnover of workers, and the mind-numbing repetitiveness of the work. Not very inspiring and certainly not life choices. While in the dry cleaning job, I saw an ad in the window of a menswear store for a junior shop assistant in a high end menswear store . I got the job and…

…pretty well set my career path for the next 28 years. A quick timeline from there would read clothing, records, religious and church paraphernalia, monastery, back to religious paraphernalia, bar useful, sex shop, liquor, community work, cash office manager, data entry/doctor surgery receptionist, office work (at ASHM – the Australian Society for HIV Medicine). At least a variety. Could I really say I loved any of this? Well, it was a job.

The option of continuing education, through TAFE or university, was never presented to me early in my life. Doing anything creative was frowned upon and indeed one would have had one’s ‘inclinations’ (read sexuality) put in jeopardy by even suggesting that you might want to write, be a window dresser, hairdresser, clothes designer, interior decorator, artist or anything else creative. I was told in no uncertain terms that this was unacceptable.

This isn’t to say I didn’t do a few things that fulfilled my creative streak. I did some window dressing as part of general retail; I did quite a bit of writing, though none of it published at that time; I did some costume-making (as well as making my own drag outfits); some catering from home for a delicatessen; made my own jams and preserves (winning quite a few prizes in the process); and I was a DJ in two Darlinghurst gay pubs and bars for five years – the only job I’ve ever truly loved. Who knows, I could still become the oldest Trance DJ in Australia given the opportunity.

What other options would I have chosen for my life? In retrospect, I would love to have been an investigative journalist, in print or television. I enjoy research, and love history, and personally think I would have made a decent career out of it. I love gardening and would have made a successful landscaper or horticulturist. I love athletics and was a good high jumper, relay and short distance runner in my day. With the right encouragement before I started smoking, I would have loved that; or working on the stage; or a singing career (again we come back to smoking!) I have an intense interest in history, both local and global, which could have led in many directions. All these not to be.

What do I do now? I write! I love writing. It’s the flow of ideas; having that fledgling phrase circling in your head that just has to be put somewhere; the one word that can become an article; anger that can be released; opinions that can be controversial; comments that create debate; taking the collective consciousness of many and making it your own; pent-up frustrations released; intelligent argument put forward; comedy to induce a smile; information to be exchanged. Writing is wonderful.

Why suddenly 15 years ago did I head in this direction? And more importantly, where can it lead at this late stage? Well, HIV brought about this huge shift in my life.

As part of my self-organised repatriation after getting out of Prince Henry Hospital and surviving AIDS, I decided to take on some volunteer work to get out of the house and away from Days of Our Lives and the panic attacks I’d started having as a result of my swift and unexpected return to life. A life of clinics, counsellors and support groups was great for filling in time, but I also needed to do something that wasn’t medical. I’d started to see one of Sydney’s more eccentric doctors at that stage and felt a need to write about my experiences with her. This opened the floodgates, which haven’t closed since. I started writing about my experiences with HIV, the processes I was going through, the strategies I was using to cope, the sheer bloodiness of being HIV+ and having had AIDS, the questioning one went through and the realisation that one had to get on with it.

I think therefore I write.

I have always, even as a young kid, loved books. My compositions at school were always a bit over-the-top, much to the amusement of my teachers, and my parents were always being told I had a very fertile mind. Shame they never took this seriously.

On leaving St Gregory’s in 1969, Brother Geoffrey, who taught English, took me aside and told me I should take up a career in writing. Stupid me just let that comment drop.

In the 1980s I was a member of Acceptance Melbourne l and had quite an intense affair with the editor of their newsletter, and contributed regularly to it. I was a prolific letter writer. I edited the newsletter for the Dolphin Motor Club and was responsible for them starting a media sub-committee. I did several courses through community colleges on fiction and life writing and had two poems published overseas.

In 2001 I was accepted into the Humanities Faculty at UTS to do a degree in writing. But the first year of an undergrad degree is full of everything except writing. UTS uses authors to run tutorials, which might sound great in theory, but is just a means for them to push their own writing agendas and methodologies. As a mature-aged student, I clashed! I also didn’t feel comfortable with the often snobbish, elitist attitudes to reading and writing. The tutorial class was horrified that my favourite authors are Stephen King, Dean Koontz, Dan Brown, Michael Crichton, and Edward Rutherfurd. Well…fuck them!

By the second year, and finding yet another author being given their own tutorial, I looked to changing the degree to a Masters. At least by doing this I was just writing. The writing courses did give me the opportunity to publicly write about my drag persona Cleo and in a short story course to talk about my murdered brother, which had never been discussed with anyone. This making public some previously private parts of my life (other than HIV) was very liberating. I had at this stage done enough subjects to get my Graduate Certificate in Writing, so I took that and fled.

My university experience is not something I wish to repeat. The one thing I did learn is that it is extremely difficult to make a living out of writing in Australia. In the meantime I continued writing for Talkabout and the more I wrote, the more I wanted to write. I began to realise that all these articles had become a timeline of my journey with HIV, from the days of illness to the healing process to the return-to-work issues, from treatment issues to regaining my health, redirecting myself and finally my movement away from a life centred around HIV, and a spiritual reawakening through Buddhism. In a way, writing freed me. I took advantage of the beginnings of the Internet to do HIV site reviews and eventually my cooking column. Before leaving Talkabout after 15 years of writing articles and columns, I did a series of articles on Getting On With It, about reshaping life, ageing, and how to cope with its inherent problems.

I would love to widen the scope of my writing. For many years people have been telling me to write about my family and upbringing which was a complex, sometimes sad, sometimes happy experience. Perhaps a bit late in my life – or not – I’m thinking of getting into freelance journalism. Everything HIV that has happened to me over the last 30 years has led to this. It has presented me with new opportunities and opened doors that had previously been closed to me. I am contemplating a course for 2024 – not a cheap thing to do, so I have to consider carefully. In the meantime I will continue to write. Am I self-opinionated? I hope so. Am I controversial? I hope so. Can I see both sides of an argument? I hope so! But most importantly, do I love writing? You bet!

Tim Alderman 2023

A Long Term Survivor Diatribe

The long-term survival journey is one where it is easy to get lost along the way. Low motivation, low self esteem, social,isolation, lethargy, and a victim mentality can lead to feelings of worthlessness, seeing no value in your own existence, and survivor guilt…all my friends have died so why am I still here! It can be overwhelming.

We have already spent 30+ years of our lives popping life saving pills, thousands of pills…and still with no end in sight. Pretty well every organ in our bodies has been subjected to incredible stress. Our minds have been tested beyond belief. We have been so low that we thought there was no coming back. Lipodystrophy and lipoatrophy have ravaged and aged us early, made us unrecognisable, made us feel ashamed of our own bodies, reticent to strip in front of strangers, in front of even lovers. We have lived without immune systems, a state of inherent danger, not knowing what was going to attack you next, a world where even a cold or the flu could be deadly. We have been eroded by strange diseases, live right now with their devastating consequences. And now we live in a world where younger generations don’t understand us, don’t understand why we carry rage, why we roll our eyes at recent seroconversions, who carry on as though death was lurking around the corner. We have met death, witnessed its cruelty. You have nothing to fear!

Yet…we are here! Present! Sentient! We carry a world of knowledge that no one seems to want to know about.

So what do we do, wandering in this alien landscape? Do we bend, fold and cower…or do we BLOOM! This world is trying to put us down, humble us when we have already been humbled. But there is one thing this world doesn’t know…we are, and always have been, fighters. We make a fist and punch the shit out of it! Then we stand back and roar at it “You are not going to win!”. Our world is not what it was! Having already been deconstructed, the only choice left is…reconstruction. So we stop! Re-evaluate! Pry around our fragile edges, gouge out the positives! Rip our lives to pieces, then sew it back together again into a fabric of renewal. We re-educate, for our past is not our present! We reconnect, seek out those from our past who valued us for who we are…and take steps to make new acquaintances, find those who bring joy, laughter and value into our lives. We feed our bodies, this indestructible machine, with goodness, purity, health. We strip ourselves naked, stand proudly in the light, and rebuild our broken frames. We glare at those who put us down, and yell “FUCK YOU…if you want to learn, come to me…otherwise, bring others down with your ignorance!”. We reconnect with life! Everything is right there in front of us…you just need the hunger to grab it by the balls, and say “make me whole again!”. Don’t give it choices! Never accept no as the answer! Take it…mould it…your new, renewed life waits! Don’t waste the opportunity! Long term survivor is not three dirty words! It is empowerment! Having survived, you rise up…proud…arrogant…and step confidently into the new.

Mantra

I am here! I’m not going away!

Tim Alderman 2023

HIV Myths: Virgin Cleansing Myth

The virgin cleansing myth (also referred to as the virgin cure mythvirgin rape myth, or simply virgin myth) is the belief that having sex with a virgin girl cures a man of HIV/AIDS or other sexually transmitted diseases.

Anthropologist Suzanne Leclerc-Madlala says the myth is a potential factor in infant rape by HIV-positive men in South Africa. In addition to young girls, who are presumed to be virgins because of their age, people who are “blind, deaf, physically impaired, intellectually disabled, or who have mental-health disabilities” are sometimes raped under the erroneous presumption that individuals with disabilities are sexually inactive and therefore virgins.

History

The myth was first reported in 16th-century Europe and gained prominence in 19th-century Victorian England as a cure for syphilis and gonorrhea among other sexually transmitted diseases. The origin is unknown, but historian Hanne Blank writes that the idea may have evolved from Christian legends of virgin–martyrs, whose purity served as a form of protection in battling demons.

Prevalence

People all over the world have heard this myth, including in sub-Saharan Africa, Asia, Europe and the Americas.

A survey by the University of South Africa (UNISA) in South Africa found that 18 percent of laborers thought that having sex with a virgin cures HIV/AIDS. An earlier study in 1999 by sexual health educators in Gauteng reported that 32 percent of the survey participants believed the myth.

According to Betty Makoni of the Girl Child Network in Zimbabwe, the myth is perpetuated by traditional healers advising HIV-positive men to cure their disease by having sex with virgin girls. In Zimbabwe, some people also believe that the blood produced by raping a virgin will cleanse the infected person’s blood of the disease.

In 2002, psychologist Mike Earl-Taylor wrote that the virgin cure myth may explain the staggering rise in child or infant rapes in South Africa, which is facing an HIV/AIDS epidemic. UNICEF has attributed the rape of hundreds of girls to the virgin cleansing myth.

However, it is unknown exactly how common the myth is and to what degree rapes happen because of the belief in it. The claim that the myth drives either HIV infection or child sexual abuse in Africa is disputed by researchers Rachel Jewkes and Helen Epstein, as well as by research on convicted sex offenders in Malawi, where no evidence was found to support the idea that the virgin cleansing myth prompted any rapes.

Importance of education

Ignorance with regards to HIV and AIDS infection serves as a barrier to prevention in numerous African nations.

Education has helped women such as Betty Makoni speak out against the myth and attempt to dissuade people from believing the virgin cleansing myth.

According to UNICEF, culture-based gender roles that prize innocence and ignorance in girls and that accept sexual licentiousness in men promote this myth. Girls may be forced to marry older men, which can increase the likelihood of HIV transmission to girls. The stigma attached to AIDS also stops many people from seeking information or health services to shield their status, contributing to further transmission.

In popular culture

The virgin cleansing myth is referenced in the Broadway musical The Book of Mormon. The minor character Mattumbo is stopped from raping a baby based on the belief that sex with a virgin will cure his AIDS. During the song “Making Things Up Again”, Elder Cunningham tells Mattumbo that raping babies is against God’s will, and invents a passage in the Book of Mormon in which God tells Joseph Smith to instead have sex with a frog to cure his AIDS.

Reference

The Hidden Survivors

Why people living and aging with HIV will lead the way

Tuesday, 9/18 is National HIV/AIDS and Aging Awareness Day. Long-term survivors of HIV face unique challenges; they are the “hidden” survivors of the epidemic. When I was diagnosed with HIV in 1989 I wasn’t sure I’d be here in 2018 to talk about it. At the time there was no effective treatment for people living with HIV, it

was basically a death sentence. For those of us who did have access to health care and treatment, we were given what we now know is suboptimal therapy that not only rendered us resistant to more effective medications that were being developed, but also had life-altering side effects that remain with some of us to this day. These side effects from those earlier, more toxic treatments have added to the stigma of aging with HIV and have disfigured us, made us frailer, and caused our hearts to literally skip a beat.

Don’t get me wrong, I am grateful to be here. As a white, gay, cis man living with HIV who turns 60 this year, I also recognize and acknowledge my privilege. I have access today to a one pill, once-a-day therapy that keeps my virus fully suppressed, so that I’m unable to pass on HIV to others, and I experience virtually no side effects to my current regimen. But I also know that when I walk into a room, I have “the look”—the sunken cheeks, the veiny arms and legs, the extended belly. “You should be grateful to be here,” we’ve been told, “thankful to be alive!” But to what end? Grateful to be here to suddenly be rolled off of disability after being out of work for 20–30 years, expected to join the ranks of the work force without any specialized training or support? Grateful to be here only to fall into addiction or isolation because our support networks, friends and former lovers no longer exist? Grateful to be here while there is scant culturally competent care for aging LGBTQ+ seniors who are living with HIV? We as a society in general do not value our elders—how does the LGBTQ+ community regard those of us aging, let alone aging with HIV?

There is much work to be done, but if anyone can lead the way, it’s people living with HIV and our allies. We were the ones who took care of each other back at the start of the epidemic, and we will come to the forefront of the battle once again. The lesbian community was there for many gay men back in the 1980s when we were dropping like flies and when no one else would touch us; thank heavens for these unsung heroes. Community-based organizations like TPANwere founded by people living with HIV so that we could survive and thrive. Informational resources like Positively Aware delivered the information we needed to live healthy, happy lives.

Earlier this year The Reunion Project convened a community-led, diverse coalition of survivor advocates to discuss the needs and priorities of survivors, and issued a report in June. Go to tpan.com/reunion-project for more info. As someone living with HIV for 29 years, I am excited to be part of a national network of survivors that is giving voice to those who don’t have one and who have in many respects been left behind.

Currently 50% of people living with HIV are over the age of 50, and by 2030 it will be 70 percent. But we knew this was coming. Where is the sense of urgency? Where is the crisis task force taking up our agenda? Do we matter?

I believe we do. As the saying goes, with age comes wisdom. Long-term survivors have an opportunity to come together and join forces, mentor those coming up behind us on how to age and live with HIV gracefully, and to advocate for those who have no voice. An entire generation was lost, so who now is going to step up and advocate for us?

Those of us who have survived.

Reference

In A Private Cemetery in Arkansas…

In a private cemetery in small-town Arkansas, a woman single-handedly buried and gave funerals to more than 40 gay men during the height of the AIDS epidemic, when their families wouldn’t claim them.

One person who found the courage to push the wheel is Ruth Coker Burks. Now a grandmother living a quiet life in Rogers, in the mid-1980s Burks took it as a calling to care for people with AIDS at the dawn of the epidemic, when survival from diagnosis to death was sometimes measured in weeks. For about a decade, between 1984 and the mid-1990s and before better HIV drugs and more enlightened medical care for AIDS patients effectively rendered her obsolete, Burks cared for hundreds of dying people, many of them gay men who had been abandoned by their families. She had no medical training, but she took them to their appointments, picked up their medications, helped them fill out forms for assistance, and talked them through their despair. Sometimes she paid for their cremations. She buried over three dozen of them with her own two hands, after their families refused to claim their bodies. For many of those people, she is now the only person who knows the location of their graves.

“When Burks was a girl, she said, her mother got in a final, epic row with Burks’ uncle. To make sure he and his branch of the family tree would never lie in the same dirt as the rest of them, Burks said, her mother quietly bought every available grave space in the cemetery: 262 plots. They visited the cemetery most Sundays after church when she was young, Burks said, and her mother would often sarcastically remark on her holdings, looking out over the cemetery and telling her daughter: ‘Someday, all of this is going to be yours.’

‘I always wondered what I was going to do with a cemetery,’ she said. ‘Who knew there’d come a time when people didn’t want to bury their children?’”

HIV Hyped

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 “Talkabout” 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 “Talkabout” 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!

Such is the life of writers lol.

Here are the links for both articles

https://www.poz.com/article/They-Shoot-Barebackers-Don-t-They-1459-4936

https://books.google.com.au/books/about/Out.html?id=cmIEAAAAMBAJ&redir_esc=y

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”.

HIV Hyped

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!

Treasure Island Media

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.

References

Getting On With It! A 37 Year Retrospective of Life with HIV/AIDS (UPDATED)

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!

The author at 65

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.

Eve van Grafhorst was diagnosed with HIV and hounded out of Australia, but her legacy endures

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.

Ready to do a quilt unfolding at the Government Pavilion, Sydney Showgrounds, around 1991. From left Peter McCarthy, Peter Gilmore, Bevan Lambert, Steve Thompson, Tim Alderman.

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.

Tim Alderman 2019

Gay History: June 5, 1981. Pneumocystis Pneumonia. Los Angeles.

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 the Pump 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 article here

References
(1) E Woo. (July 23, 2009) Dr. Joel D. Weisman dies at 66; among the first doctors to detect AIDS. Los Angeles Times [Online]. Accessed November 16, 2012 athttp://www.latimes.com/news/nationworld/nation/la-me-joel-weisman23-2009jul23,0,7095313.story

(2) E Fee & TM Brown (2006) Michael S. Gottlieb and the Identification of AIDS. Am J Public Health; 96(6): 982–983.http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1470620/

(3) S Israelstam et al. (1978) Poppers, a new recreational drug craze. Can Psychiatr Assoc J;23(7): 493-5

(4) V. Quagliarello (1982) Acquired Immunodeficiency Syndrome: Current Status. Yale J Biol Med; 55(5-6): 443–452

(5) Centers for Disease Control (CDC) (1991) The HIV/AIDS epidemic: the first 10 years. MMWR Morb Mortal Wkly Rep; 40(22): 357. Accessible athttp://www.cdc.gov/mmwr/preview/mmwrhtml/00001997.htm

(6) UNAIDS (2012) UNAIDS World AIDS Day Report. UNAIDS. Accessible athttp://www.unaids.org/en/resources/campaigns/20121120_

Article Reference

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

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.

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