I was lying in bed recently listening to an audiobook, part of a gay series, revolving around the staff in a gay cafe in Cornwall, England. One of the younger waiters had just met, and was having a “thing” with an older cafe patron, who was in a relationship that was just no longer working. They were having sex in the waiters home, and the author described their lovemaking in such a realistic, but romantic way that I found myself contemplating my current solo life.
I had to stop the story for a bit. W…T…F was this all about! The fact was that while listening to the lovemaking description in the book…in my head I was thinking…will this ever happen to me again…will I, at this stage of my life, ever have sex with another man again…and no, I don’t think I ever will…and I really miss it…both the sex…and the intimacy!
You see, if I had to write a formula for this stage of my life, it would be; ageing+gay+hiv=invisible!
At 71, I’m probably a bit harsh with my self-assessments!HIV+ (and undetectable)…severely vision-impaired, and with mobility problems stemming from huge doses of AZT in the early 90s, mixed in with AIDS in 1996. I no longer have my own teeth, and the proud owner of one prosthetic eye. I keep myself relatively fit, but have a bjt of fat around the middle, brought about by HIV meds, and which I can’t seem…despite some pretty intensive attempts…to get rid of.
I live in a world that is ostensibly driven by vanity, an obsession with body image, and if you’re male… looks! I can’t get away from it! It follows me around, mocking me. It’s on Facebook, It’s on Instagram, it’s in every magazine I pick up, every television show, movie, advertisement, and gym visit (in past years). At my age, I’m supposed to be past all this, but should I be? I do question the apparent notion that I’m “past it” and if I want to have an ongoing sex life…and I laugh hysterically here…I should be labelling myself as a “Bear” or a “Daddy” or a “Silver Fox”! This is stereotyping at it’s very worst, telling me that to be desirable I have to give up being “me”.
Ageing is a bit of a convoluted thing, in my experience. One minute you are desirable…then you get hit by that reality stick whereby you go out, and no one pays attention to you, or approaches you. Guys walk past you like you just don’t exist. You sink into the wallpaper and furnishings. As a gay guy who was active on the scene, I found ageism to be rife, and was often thrown in your face by younger guys. You were made to feel that you WERE old, and thus no longer desirable. And you were often just in your 40s, so not old at all in the real world.There has always been the joke…that is not a joke on the gay scene…that once you hit 40 you are considered too old to be desirable any more! Well trying hitting 50, 60 or 70! I remember being at the bottom bar in The Midnight Shift one night with a guy who had bought me a drink. We were chatting away, and I mentioned I was HIV+. He just stood up and walked out. One of the few times I have ever felt “unclean”! It is not a nice feeling!
The one thing that drove home to me the real impact of ageism, invisibility, and HIV stigma was the sex apps…euphemistically referred to as “dating” apps! When my 16-year partner and I called it quits in 2014, these apps and web sites were new territory for me. I approached them positively, thinking…foolishly, as it turned out…they would assure me an ongoing sex life. I was totally honest in my profile…both my age (at that time), and my HIV status Well, maybe if I lied about my age, didn’t reveal my HIV status, and uploaded a not-recent flattering profile photo I may have scored a sex life! If you want to feel degraded and humiliated, these are the places to go! Honesty doesn’t reap rewards on these sites! I waited for the messages for fun times to roll in…and waited. Evidently the appeal of sex with a 60-year old didn’t appeal to many, especially someone with HIV!
As well as not going the way I planned, it was my introduction to the language of stigma…phrases like “are you clean?” and “I want you to breed me!” left me feeling deflated! Were these really gay men interacting with me! Did they not know about HIV! Or just choosing to live in ignorance! This is not language you would use with non-HIV guys, so what is it that makes HIV+ guys “unclean”…and have you never heard of undetectable viral loads? Has the entire U=U campaign gone right over your head! Gay men putting other gay men down is not cool!
So I gave up on the apps, after only one contact. And I got tired of guys lining up dates, then just not turning up…not even a message. I don’t need things that put me down!
So 10 years later, I’m living alone with my dog. I have a great social life, but I’m 71 now, and a lot of guys have their own assumptions about that. At this stage, I’m not interested in a relationship…I’ve had enough of those over my time on the scene. As mentioned earlier, it’s not the sex I miss, so much as the intimacy, the sensations of touch, the security of a cuddle. My vision is pretty bad, as is my mobility, and I live on my own…all things I can live with (curtesy of both HIV and AIDS) which brings about certain insecurities in the dating game. I would not want a stranger knocking on my door for “fun times” these days Having disabilities means I am aware of my vulnerability., that if someone attacked me, or tried to take advantage of my situation to, say, rob me, I would have put myself in great danger, and could end up beaten up…or worse! It is a scenario I’m too aware of! Already the odds of meeting people aren’t good!
So let’s drop the assumptions…I am still sexually active! I don’t feel “old”, nor do I look or dress “old”. I’m pretty well adjusted to modern living. Yes, my social circle is quite different these days, as tags such as “gay” and “HIV+” no longer define who I am. It isn’t denial…if anyone asked I’d be quite out about it…it’s more that first and foremost these days, it’s more about just being a person, an individual! Funny how things that used to be important, become less so as time passes.
However, there are still those moments where to be enveloped in another man’s arms, the squeeze, the contact, just the feel and smell of another man would be a nice way to be rocked to sleep. So let’s stop defining people by how they look, or stigmatising them because of their age, or their status, or even their sexuality. We are visible! We are thriving, vibrant, engaging, life-experienced beings, still capable of everything that once made us young and desirable, with a breadth of experience, and life, that suffocates all predetermined notions of being the person YOU think we are. Push our boundaries, and expand your own! To finish with a cliche… there is treasure to be found.
New words were added to our vocabulary, a series of acronyms that would imprint themselves forever into our memories…PCP (Pneumocystis pneumonia); KS (Kaposi sarcoma); CMV (Cytomegalovirus…one I’m intimately familiar with))… MAC (Mycobacterium avium complex); candidiasis (Thrush), toxoplasmosis, to name a few. When we asked how people were, we were really asking what did they have…and what was the prognosis! Meanwhile, the Australian nightmare was well and truly hitting home.
In 1986, my first close friend, Andrew Todd, died. At that time there was no dedicated AIDS ward, and Andrew was shifted between wards as beds were needed for other cases. On Christmas Day, we visited him in what was called St Christopher’s ward (due to patients travelling into and out of it), in Sydney’s St Vincent’s emergency department. He was very thin, and frail, but we had brought gifts for him, including sheet sets, and books. We were going to a friends place in Glebe for Christmas lunch. When the time came to leave, Andrew said to us, something that was quite upsetting for us, I have to say, that he ‘wouldn’t die that day, and ruin everyone’s Christmas lunch’. It unintentionally did, as we waited all day on edge, for a phone call. True to his word, he didn’t pass away on Christmas Day. He died on Boxing Day. It was my unpleasant duty to ring everyone at a party, and inform them. Party pooper status acknowledged!
His funeral at Eastern Suburbs Crematorium, a place we were to visit on far too many occasions, was several days later. His father had travelled from South Australia to oversee it. Myself and Sandro, both close friends of Andrew’s, ended up being the middle men between those of us who wanted a funeral that was honest and respectful, and the leather community who wanted what we considered an over-the-top leather funeral. We won that one.
Towards the end of the crematorium service, as the curtains were closing over the coffin, every door in the chapel suddenly, and very loudly, slammed close. The silence after was eerie. We could say it was just the wind, but one was left wondering. Andrew got the last laugh anyway. I had lent him many novels during his hospital stays, and in his will he bequeathed them all back to me.
Sex became a conundrum. As soon as it was found that HIV was sexually transmitted, the dynamics of sex changed, at least temporarily. Some guys went celibate. Others cut out anal sex altogether. Others went to odd extremes, like standing well apart and just mutually masturbating. For a culture that was heavily geared towards sex, it was a real blow. The dynamics of “picking up” changed significantly. Condoms became the new order of the day, and condom and lube “safe sex” packs were everywhere, from sex venues to pubs and nightclubs.
ACON created the Safe Sex Sluts, who at least put a bit of fun into what was now a serious subject. This, over time, created some reverse, and some dark situations. On the dark side, terms like “bug chasing” came into being. This phrase described those who deliberately sought out HIV+ guys and indulged in unsafe sex on the purely weird chance that they would get infected. “Breed me” could often be seen on sex sites, placed there by guys who wanted to become infected. It was strange times.
Then there were guys like me who just hated sex with condoms. They ruined spontaneity, and were just passion killers. Naturally, this meant we were seeking out guys to have unsafe sex. To this end, I restricted my sex life to sex with HIV+ guys only. It was politely referred to as “negotiated unsafe sex”. I could never have lived with myself if I knowingly passed on HIV to another guy, but the thinking was that it was impossible to infect a guy already infected. Talk of the risk of creating a HIV mutated “super bug” came to nothing.
Of course, this meant constantly outing yourself as HIV+, but that has never greatly concerned me, and by this time I was working on the scene so it wasn’t a risky thing to do. For the record, I had a very fulfilling sex life. There was no shortage of HIV+ guys hunting for skin-on-skin sex. Another term spawned by the era of safe sex was “barebacking”…known as normal sex (or condom-less sex) in earlier times. Yet despite all the restrictions, self imposed or otherwise, the sex-on-premises places such as Numbers Bookstore which I managed in Darlinghurst, the Toolshed, the Hellfire Club (later to become the Den Club), Club 80 (initially thought to be Ground Zero for the Sydney epidemic) and various others, and the saunas such as 253, the Roman Baths, KKK and the Steamworks, and other notorious sites such as the beat in the Green Park toilet block, and The Wall on Darlinghurst Road, thrived.
In 1984, Ward 17 South was established at St Vincent’s Hospital, Sydney which became the dedicated AIDS ward. For the next 10 years it was never empty. Palliative care was through the Sacred Heart Hospice. With the support services in place, pubs and nightclubs started running events to raise money. I think if there was ever a time where I was proud to be a member of the Sydney gay community, it was seeing the huge amounts of money raised at auctions, raffles, and events. Tens of thousands of dollars were raised from the pockets of the grassroots community, and was either spread around the various support groups, or was used to buy things like televisions for Ward 17.
In 1987, Colin Crewes, seeing the need for basic lifestyle support, such as meals, a place to meet and interact with others in the same situation, massages, hair cuts, access to magazines and newspapers, counselling services etc started the “Maitraya Day Centre” in Surry Hills (it later morphed into the “Positive Living Centre”). It had a constant stream of guys socialising there. At Milton’s Point, NorthAIDS (Myrtle Place Centre) offered the same services to those living on Sydney’s northside.
Hospitals such as Westmead, hit the headlines for all the wrong reasons; full contamination clothing for those working with HIV patients, rooms not being cleaned, meals left outside doors. According to the rumourmongers, you get HIV from using plate/cups/cutlery/glasses/toothbrushes/towels/bed linen that any infected person had used. It was anathema despite it being washed, despite all information stating that you could not contract HIV through this means. Even the poor old mosquito copped a hiding as a means of contamination. An advertising campaign in 1987 featuring the Grim Reaper bowling down people indiscriminately, created an apocalyptic vision of HIV that scared the life out of everyone. It was quickly withdrawn three weeks into its six week run.
By this stage, my two years prognosis had become four years…became six…became eight. That was great for me, but not for so many others. The obituary columns in the gay rags went from scattered memoriums to pages as the death toll mounted. My life became a haze of alcohol and cigarettes, not shared alone. Our coping mechanisms were being stretched to their limit. Funerals were a daily occurrence, as were wakes. I attended as many as I could, but I just got to a stage where I was burnt out by the continuing relentless onslaught, and stopped going.
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. In 1997, having finally recovered from AIDS, and thinking it was time to reconnect to the community, I went out one Saturday night to The Beauchamp. For the first time in my life on the gay scene, in a crowded pub, I stood in a bar and could see NOBODY I knew. It was an incredibly lonely sensation.
Tim Alderman 2024
Above photo…Peter McCarthy, Peter Gilmore (Deceased), Bevan (Deceased),,Steve Thompson and myself at an AIDS Quilt unfolding (we were unfolders) at the RHI Pavilion (Sydney Showgrounds ) around 1992. The tee-shirts bear the Quilts Insignia, and “Remember Their Names”
I love history. Always have, and excelled at it at school. Not just local and world history in general, but individuals personal history as well. Though often distorted, edited to fit the times, world history is fixed. There is only one truth to it, no matter what narrators may say. Personal histories are quite a different thing. A hundred people will produce a hundred histories, each distinctly individual, never duplicated by anyone else. I have written much about my experiences with HIV over the last 25 years, most of it via “Talkabout”. Though personal, and often intimate, none have really gotten into the nitty-gritty of my personal, lived experience. This reflective piece is to rectify those omissions, giving both a factual and lived insight into a period in gay history that should never be forgotten. The recent Covid experience really drove home to me how HIV, its past, and still present history, was no longer of any consequence. Covid was being spoken about as though it is the only pandemic of recent time. It would be interesting to see where Covid sits in 40 years time.So this is my history with HIV/AIDS. It is more detailed, and more anecdotal than my previous writings…which also means it’s much longer. It is, with no strutting involved, a story of survival, but if survival is the gauge of one’s strength and tenacity, then I have come out at the end of it with flying colours, the glass half full, so to speak.
Over 40 years has passed since I sero-converted to HIV. I remember it well…I was managing a retail store in Sydney and was due to go on leave in August 1983. My last day before going off on my break was hellish. Temperature, diarhhea, extreme lethargy, disorientation…I couldn’t wait for the day to end. As it turned out…for the fortnight it went on for to end. I had only been out for 3 years…a late closet jumper…and I have to admit to being very trashy, making up for lost time as it was. I have wondered over the years, as have many, just who it was that infected me…and where! Was it that hot American boy who was staying in The Connaught in Darlinghurst, who picked me up one night just after my return from Melbourne (very likely!) or was it a Melbourne or Sydney local who had returned from a holiday in the USA, or, like me, gotten off with American boys (the flagour of the month) here. Of course, I’ll never know, but the speculation remains anyway!
Since that time, both as a writer, and as a 12-year public speaker with the Positive Speakers Bureau, I have told of my journey with HIV/AIDS. But the story has always had constraints…either in word length with articles, or time restrictions in talks. There is a lot more to the story than I tell in these…often done by rote…sessions.
I have just finished reading Cheryl Wares “HIV Survivors In Sydney – Memories Of The Epidemic”, an oral history project that I was part of, contributing a 21/2 hour interview with Cheryl when I lived in Gaythorne, Queensland in 2014. I was disappointed in the book, for as much as Cheryl wanted it to be a story of ordinary gay men surviving HIV/AIDS, and how it affected their lives both then, and now, it really came across as a voice for…and was hijacked by… HIV activists, rather than just us bar crawling gays-on-the-Golden-Milers. I was left feeling that both my contribution, and the contribution of others like me who weren’t part of the activist community was largely overlooked…again. I know it sounds like sour grapes, and mine is only one of a thousand survivor stories, but like many others I want there to be some sort of public record of many aspects of the HIV/AIDS survival story that doesn’t make it into many articles, or talks. The one thing Cheryl’s book did do was to invoke memories of so many personal experiences…and feelings…that made my personal HIV journey…MY journey.
This is not the first time I’ve contributed to interviews and photo sessions on HIV/AIDS survival, and either been left out in the cold, or had my story overshadowed by activists…or academics. But more on that as we go along. Because this is a personal transcript, I am not putting a word limit on it, so it’s going to be long. I want all this unknown or forgotten information to be in one article. It’s not a soul-cleansing, so don’t get me wrong. I see it more as an addendum to HIV history. I want it in writing before I either forget it, or confuse it in the fog of ageing. Luckily, I am a bit of a hoarder, so have copies of a lot of the things I will be referencing as the story unfolds. To make sense of it, I guess I need to go back to the beginning.
I have written a lot on my family, the dysfunctionality of my growing up, in my blog (http://timalderman.com), so I am not going to rehash already told stories here. In a nutshell, I was born in St. George Hospital, in Kogarah (NSW) on the 18th January 1954. I had one younger brother, Kevin, who was born in 1959. My childhood was pretty uneventful until I was 11, where with my mother deserting the family home, when my brother and I were at school. My father was a difficult man, trapped in a past that had long gone! Yet, he managed to find the housekeeper from hell…to this day I have no idea where he found her, though her move from the bed in the sunroom of our Sylvania home to the bed in the master bedroom occurred within a week, so I am left to wonder… entering our lives. Her persecution of my ADHD brother was relentless, and led to the death of him, at my father’s hands, in the waters below the cliff top known as The Gap. Thisblew my innocence all to the shit. My knowledge of “being different” at age 9, and my eventual coming out after my father’s suicide are also on my blog, so let’s move it all along.
1980 finds me in Melbourne, where I had just come out as a 26 year-old. A HIV story begins. Little did I know that both my life as a gay man, and my life as a HIV+ man were to walk the same road.
So what was it really like in 1982 to be reading snippets in our local gay press about this mysterious illness (KS, or Kaposi Sarcoma), rearing its ugly head in the gay ghetto’s of America, that seemed to be targeting gay men who frequented the saunas, and quickly killed 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. However, the snippets were to become columns, the columns pages as the mysterious and deadly virus…originally labelled as GRID (Gay-Related Immune Deficiency (Gay plague/Gay syndrome) in 1981, it was followed by HTLV-3 in 1083…human T-lymphotrophic virus type 3…leapt from the shores of America and found its way into the gay scene here. The panic and fear began!
Our response was mixed. The first case of AIDS was reported in Sydney in October 1982 by Dr Ronald Penny. In July 1983, the first recorded Australian death from AIDS-related causes occurred in Melbourne.. The most notable death in these early days was Bobby Goldsmith (1984).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 Christians liked to rant about…the most vocal and notable being the Rev Fred Nile MLC and his Festival of Light, and Call To Australia affiliations, the advocates of hate and intolerance who demanded quarantine for all infected persons, and those of the citizenry who either quietly or vocally wished that we would all die or just go away. Mind you, we did have our fun with them. I vividly recall one early Mardi Gras…back then, joining the parade was a very informal process…where the Festival of Light were protesting at the parades starting point. Myself and some friends, dressed in leather chaps with our bare backsides hanging out of them, deliberately stood in front of them, shaking our booty, much to their horror and disgust.
There is no watering it down…discrimination and stigmatisation was rife. It was frightening!
Thankfully, common sense eventually 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 (BGF), Community Support Network (CSN) PLWA (which was to become PLWHA), ActUp, and Ankali. Without these organisations life would have been grim for those infected. They provided financial, emotional and spiritual support for those who, quite suddenl found them selves with a death sentence hanging over their heads, along with the fear of unemployment and homelessness in the midst of the hysteria going on.
I digress! In 1985 testing was introduced. It was a bit of a strange affair in the early days. Due to the hysteria, discrimination, and fear of being dragged off to quarantine…a genuine fear… no one wanted their personal details on a database, so at clinics like the Albion St Centre you chose a fictitious name, and the clinic then issued you with a number that then became your ID. Mine was Peter 3080. When things cooled down, the fictitious name was dropped, and replaced with your real name. You had a blood test, and waited for two to six weeks – talk about high anxiety – to get your result. At the time of my HIV test, I 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! The initial window periods were reasonably long, but got much shorter as time progressed, and the virus mutated. That I did not get seriously ill with AIDS until 1996…though their were other factors in play…I always put down to getting infected early in the history of the virus, thus getting a much weaker mutant of the virus than what was to come. I was in a relationship at that time, and my partner came up HIV-…already the juxtaposition between positives and negatives had begun. The strange thing was that I felt no need to hide my status. I turned up at the Oxford Hotel and said to friends…oh well, I’m positive. Of course, I was far from being the only one.
Then the horror stories started! 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
In early 1994, I had a huge 40th birthday party at the Stronghold Bar, in the basement of the Clock Hotel in Surry Hills. At the same time, I dumped the beautiful man who had been my boyfriend.
With declining health, I thought it would be my last big birthday party.. I hoped I might get another year…maybe 2. I did not want my boyfriend to be lumbered with the care of a dying man. There were others better equipped to do that. At that stage, I had no inkling that my guess would almost come to fruition, and that within those two years, HAART (Combination Therapy) would appear. It whisked me…literally…from the arms of death. Battered and bruised from my encounter with AIDS, I was thrown unceremoniously back into society.
Even at that stage I was already, along with others who walked similar though divergent paths, a long term survivor. According to the statistics, I should have departed this life around 1987. Four years would have been considered a good run, let alone thirteen! That I had survived that long…longer than most of my social circle…filled me with a strange mix of guilt, thanks, and hope. Having been given a second chance, nothing was going to be the same again! And it wasn’t!
Now at 70…way past the self-imposed 40 deadline…and as a 41-year long term survivor, the trepidation of those earlier days is way back in the dark past. Though I still get a jolt when I fully realise the implication of those two figures…70…41! It seems surreal. I did grab the opportunity, and reinvented myself…a university degree in writing, and two TAFE degrees in both cooking (chef), and fitness have positively changed my life direction.
As a long term survivor…and I wear the badge with modest pride, having beaten the odds…the other significant aspect of having been where I have, is the knowing that I have lived…and continue to…through the entirety of a pandemic. What irks me is that, as a valuable historical resource, my knowledge is overlooked, pushed into the background of history. Covid was nasty…and still is…but was treated as though it was the worst thing to happen to mankind. Yet only 40 years earlier, one of the worst pandemics of modern times had started to run its course, and over 40 million people have died as a result of it.
Let’s get one thing straight…I’m NOT a conspiracy theorist! I would like to think I weigh things up before coming to a conclusion. I’ve seen…and heard… a lot over the last 41 years of my life with both HIV, and AIDS! Some good, some not so good. Many will not agree with me on some, or all of these points, and that’s fine! But there are also a lot who will! There will never be a Royal Commission, not even a dissection of how HIV was handled “back in the day”. There was a thinking that drastic times called for drastic actions, and thus everything was acceptable, despite any damage it caused. I’m one of those who begs to differ, even if it makes me out to be a crackpot! Oh…and another point I need to make…yes, I AM suspicious of Big Pharma! Both their intentions, and practises!
So…why am I defending myself? Well…I have some “outside-the-square” theories/thinking on how the HIV community has been used by the drug companies over the decades. Of course, they are BIG, so have a lot of clout, and nobody ever seems to question their intentions.
I have always considered it a bit odd that there have been investigations into how Covid was handled, federally and on a state level, but nothing into the handling of the HIV pandemic. As stated already, it is almost like there was an “anything goes” attitude towards issues regarding HIV. As long as an action could be justified, it was okay!
In 2018, I had a chapter dedicated to me in the “HIV Book Project” publication of the same name. Over the decades, I have had many interviews by media, including Good Weekend, and a segment on the television series Healthy, Wealthy & Wise. Apart from a very cringy article in The Bulletin in 1987, back when we knew fuck all about HIV treatment, and survival rates, my story, as interesting as it is, as told in interviews and photographic sessions, had never been published in the mainstream media. This has always appeared to be the domain of activists, HIV “hierarchy”, and academics. So much for the voice of the HIV guy on the street!
My interview and photography session for the HIV Book Project took place in Sydney Park, with an ex, and my dog, Benji tagging along. When they decided to include me in the book, I was, to a point, surprised! My opinions were controversial, and my actions to handle my HIV drug treatments my own way must have raised many an eyebrow. After all, compliance had been rammed down our throats for over 20 years, and that someone like me dared to defy the norm was, to say the least, foolhardy! To my way of thinking, our doctors didn’t decide our medication dosing…the drug companies did!
After being on one regime or another…extending back to the days of mono therapy…for over 25 years I was greatly concerned about how these drugs must have been knocking my body around. At that time, I was on a regime of three drugs twice a day. Over a 7 year period, I had made the very personal decision to halve my regime to once a day. This effectively cut out side effects I was experiencing at that time. It also gave my body some respite from the continued battering of long-term drug dosing. To make things worse…I was also taking a drug holiday every weekend. So these views and actions were published in the book. I had never admitted to anyone that I had taken this action. Not even my doctor!
After publication, I read the other stories in the book. Comparing my story to theirs, I actually felt as though I had come across as a bit of a weirdo! Perhaps to my own detriment, what I hadn’t explained was that when I started this action, my intention had been that if by halving my dosing my viral load climbed, or my CD4 count dropped, I would resume the prescribed dosing. Yet after 7 odd years of doing this, my viral load was still undetectable, and my CD4 count continued to climb! So much for the need for compliance! I’m not advocating that everyone on HIV drug regimes should do this…but it is food for thought!
And it doesn’t stop there! I openly defied those who love to claim that AZT was beneficial, and kept the wolf from the door! This was an incredibly toxic drug! Having failed as a cancer drug due to its toxicity, it was suddenly hailed as a breakthrough drug in the treatment of HIV, despite trials such as the Concorde trial (Britain/Ireland/France) labelling it as “human rat sac”. Anyone who saw “Dallas Buyers Club” would be familiar with the disdain in which the drug was held. Its side effects…and we were dosed massively with it…were horrendous, including liver and kidney damage, peripheral neuropathy, knocked the immune system around (immune suppression), and anaemia. On a HIV forum many years ago, I posted that I personally held AZT responsible for the sudden decline in my CD4 count, and the immune suppression that brought about my run in with AIDS. I thought I would cop a slamming for expressing such an opinion, only to find in the comments that many agreed with me! Like me, many regretted taking it!
I also question…please note that word…the ethics behind the pricing of HIV drugs! At one time, the actual retail price of the drug…usually in the many hundreds of dollars…was printed on the pharmacy label. Anyone on three or four drugs would never have been able to afford to buy them every month, especially anyone on a pension. One has to wonder that, without the PBS, would the drug companies have just allowed us to die…or would we also have had to run buyers clubs!
Which brings me to resistance testing…another drug company instigated test, and one I have always been…vocally…doubtful about. Excuse my cynicism, but if a drug company is developing and pushing a particular test, there has to be something in it for them!Has anyone noticed…and I’m sure you must have…that pretty well everyone who had a drug resistance test was taken off the older drugs (despite them still working) and placed on the newer drug regimes! Logic decrees that, considering the costs of research and development, Big Pharma would prefer us all to be on the newer drugs, considering that they would have the highest financial outlay! I reckon we were really duped on this one, especially considering that currently those who are experiencing weight gain…another point worth raising…from the newer drug regimes are requesting a return to the older drugs…which at some stage they would have been told they are resistant too. Interesting, that!
So call me a weirdo, or a ratbag! To be honest, I really don’t care! For no reason has the term HIV Industry been coined! Someone is making money from it, and undoubtedly keeping the shareholders happy…and it’s not US! I would rather be called a whacko…at the least, after 41 years being HIV+…that I’ve experienced enough, indeed seen enough, to know that if you are not one of the sheep who just goes along with the flow, if you are someone who thinks for themselves with a moderate dose of cynacism, you are always going to be attacked and slammed.
I have broad shoulders. I can handle a bit of criticism.
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?
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?’”
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.
In the period October 1980-May 1981, 5 young men, all active homosexuals, were treated for biopsy-confirmed Pneumocystis carinii pneumonia at 3 different hospitals in Los Angeles, California. Two of the patients died. All 5 patients had laboratory-confirmed previous or current cytomegalovirus (CMV) infection and candidal mucosal infection. Case reports of these patients follow.
In honor of National Gay Men’s HIV/AIDS Awareness Day, I’m republishing my article on the first report documenting the emergence of the HIV/AIDS pandemic. That article, published in the CDC’s Morbidity and Mortality Weekly Report on June 5, 1981, describes five cases of an unusual form of pneumonia in atypical patients, all young men. The broader social and public health implications of these five cases were not understood at the time of the article’s publication, but would be in just a few unnerving months. In short time, it would become clear that this pneumonia, caused by a tiny fungal organism, was part of a constellation of diseases associated with a novel and highly unusual viral infection that was spreading rapidly through a subset of the American population.
This MMWR article is the first record of an emerging outbreak that, in just one decade, would be the second leading cause of death in young American men 25 to 44 years and have infected over 8 to 11 million people worldwide. As I note in my article, “the June 5th report is a symbol of a time before HIV/AIDS became ubiquitous, before it became a pandemic, before a small globular virus became mankind’s biggest global public health crisis … June 5th marks the beginning of a radical transformation in how disease surveillance and medicine was conducted.” The HIV/AIDs outbreak, since this report’s publication and the growing awareness of the virus, has profoundly changed medicine, public health, virology, and the lives of millions of people.
It often seems that gay men are disproportionately, and perhaps unfairly, bludgeoned with HIV educational and awareness campaigns. After all, this virus is an equal opportunist infector infecting both genders of all sexual orientations. And, yes, men that report having sex with other men represent a truly tiny proportion of the United States population, a slim 2% of the three-hundred million that live in this country.
However, as the CDC reports, gay men account for 63% of all newly diagnosed HIV infections in the United States and make up 52% of the current population of people living with a HIV diagnosis. Stopping the continued transmission of HIV/AIDS in this country critically relies on affecting change and promoting awareness among these men. In 1981, we just became aware of the HIV/AIDS virus. Today, we continue to bring awareness to prevention, testing, and treatment of a virus that continues to percolate through the same vulnerable population that was brutally affected nearly thirty years ago.
June 5, 1981. Pneumocystis Pneumonia. Los Angeles.
“Pneumocystis Pneumonia — Los Angeles,” in the June 5, 1981 edition of the CDC’s Morbidity and Mortality Weekly Report, was an economical seven paragraph clinical report cataloging five observed cases, accompanied by an explanatory editorial note on the rarity of this fungal disease. It seemed to be nothing out of the ordinary from MMWR, a publication that has been issuing the latest epidemiology news and data from around the world for 60 years. The report was included in that week’s slim 16 page report detailing dengue in American travelers visiting the Caribbean, surveillance results from a childhood lead poisoning program and what measles had been up to for the past five months.
Since 1978, Dr. Joel Weisman, a Los Angeles general practitioner, had been treating dozens of gay men in the city presenting with a motley collection of uncommon illnesses – blood cancers, rare fungal infections, persistent fevers and alarmingly low white blood cell counts – typically seen in the elderly and immunocompromised (1). In 1980, he was struck by two profoundly ill men and by the similarity of their symptoms, their prolonged fevers, dramatic weight loss, unexplained rashes and swollen lymph nodes. He referred them to Martin Gottlieb, an immunologist at UCLA who just so happened to be treating a gay patient with identical symptoms.
All three men were infected with Pneumocystis pneumonia, caused by the typically benign fungus Pneumocystis jirovecii, and soon Gottlieb would hear of a two more patients with the fungal infection from colleagues (2). The MMWR editorial note accompanying the report of these cases would mention that Pneumocystis pneumonia, or PCP, is “almost exclusively limited to severely immunosuppressed patients” and that it was “unusual” to find cases in healthy individuals without any preexisting immune system deficiencies. The disease would later be cataloged on immunological graphs illustrating the awful decline of the infected – first the CD4+ T-cell count falls as the viral load ascends, then a marching band of viral, fungal, protozoan and bacterial infections capitalizing on the loss of CD4+ T-cells. PCP is now known as a classic opportunistic infection of those infected with HIV/AIDS.
In the first sentence, the report would note that the young men were “all active homosexuals.” These five were all “previously healthy” men in their late 20s and 30s. They did not know each other, they did not share common contacts and they did not know of any sexual partners suffering with similar symptoms.
Three of the men were found to have “profoundly depressed” numbers of CD4+ T-cells. All five reported using inhalant drugs, or “poppers,” common in that era among gay men, which would later serve as a lead into this new syndromic disease (3). Cytomegalovirus, found in the five men, was also suspected as a culprit behind this strange outbreak. The editorial note stated definitively that “the fact that these patients were all homosexuals suggests an association between some aspect of a homosexual lifestyle or disease acquired through sexual contact and Pneumocystis pneumonia in this population.”
By the time the very first report on this acquired immunodeficiency syndrome, which we now know as AIDS, had been published by Gottlieb and Weisman and three fellow physicians in the MMWR, two of the patients had already died.
New reports showed up after the June 5th report, the list of cancerous malignancies and bizarre diseases killing young gay men blossoming in number, seemingly inexhaustible in scope and variety. The first reported cluster was in Los Angeles but by the summer and fall of 1981, reports would trickle in from San Francisco and New York City, and then Miami, Houston, Boston and Washington, D.C. would represent new epicenters.
The July 4th report on 26 cases of Kaposi’s sarcoma, a rare cancer that only appeared in elderly men of Mediterranean descent, in California and New York City was another pivotal report on this new syndromic disease. The entire December 1981 issue of The Lancet was dedicated to the disease and hypothesized on the origins of this immunological deficiency but, tellingly, none of the articles proposed an emerging infectious disease as the culprit. The disparate constellation of diseases seemed to be linked only by their aberrational appearance in men in what should have been their prime, their gay lifestyle, and abnormally low CD4 cell counts. It had no apparent origin, and physicians were scrambling to find an appropriate treatment to decelerate the rapid progression to death.
By December 1981, it became clear that this disorder wasn’t limited to gay men but also affected intravenous drug users, recipients of transfused blood products and immigrant Haitians. The escalating numbers of cases reported daily and the disastrous mortality rate – 40% of patients were dying within a year of diagnosis – began to sow panic in the public health and medical world that soon spilled into the public (4).
It would take three years before the virus was detected and AIDS was definitively linked to an infection caused by a novel virus, human immunodeficiency virus or HIV. In just a decade, AIDS would be the second leading cause of death in young men 25 to 44 years in the United States and would have infected over 8 to 11 million people worldwide (5). The most recent estimate for the number of people worldwide living with HIV/AIDS is 34 million in 2011, with 68% residing in sub-Saharan Africa (6). That year, there were 2.5 million new HIV infections and 1.7 million AIDS-related deaths.
Though the June 5th, 1981 report was overlooked at first, for many years it would be “one of the most heavily quoted articles in the medical literature” (2). And since its publication, we have seen a cataclysmic shift in how the interrelated worlds of public health and medicine view infectious diseases, especially how to prevent, control and educate the public about them.
June 5th marks the beginning of a radical transformation in how disease surveillance and medicine was conducted. In the seventies, the scientific consensus on infectious diseases was that they were largely eradicated, that they were finished. Vaccines had diminished their presence in modern society, and antibiotics and antivirals would sort out the rest. HIV/AIDS changed that mentality and reality. It seemed to come from nowhere, the blossoming epidemic completely unforeseen and unprecedented in its scope. The June 5th report is a symbol of a time before HIV/AIDS became ubiquitous, before it became a pandemic, before a small globular virus became mankind’s biggest global public health crisis.
Author’s note: This article was originally published in January 2013 at thePump Handle blog as a part of a series on “public health classics,” exploring some of the classic studies and reports that have shaped the field of public health. Check out the original articlehere.
The man blamed for bringing HIV to the United States just had his name cleared.
New research has proved that Gaëtan Dugas, a French-Canadian flight attendant who was dubbed “patient zero,” did not spread HIV, the virus that causes AIDS, to the United States.
A cutting-edge analysis of blood samples from the 1970s offers new insight into how the virus spread to North America via the Caribbean from Africa. More than 1.2 million people in the United States currently live with HIV.
The research, conducted by an international team of scientists, was published this week in the journal Nature.
“No one should be blamed for the spread of a virus that no one even knew about, and how the virus moved from the Caribbean to the US in New York City in the 1970s is an open question,” co-author of the research, Dr. Michael Worobey, a professor and head of the ecology and evolutionary biology department at the University of Arizona, said at a news conference Tuesday.
“It could have been a person of any nationality. It could have even been blood products. A lot of blood products used in the United States in the 1970s actually came from Haiti,” he said. “What we’ve done here is try to get at the origins of the first cases of AIDS that were ever noticed. … When you step back in time, you see a very interesting pattern.”
‘Patient zero’ and the power of a name
In 1981, researchers at the Centers for Disease Control and Prevention first documented a mysterious disease. In their research, they linked the human immunodeficiency virus, or HIV, to sexual activity.
In 1987, the National Review referred to him as the “Columbus of AIDS,” and the New York Post called him “the man who gave us AIDS” on its front page.
“We were quite annoyed by that, because it was just simply wrong, but this doesn’t stop people from saying it, because it’s so appealing. You know, ‘The man who brought us AIDS.’ Well, if it were true, it would be annoying, but since it isn’t true,
Gaëtan Dugas was dubbed “patient zero.”
However, the letter O was misinterpreted as a zero in the scientific literature. Once the media and the public noticed the name, the damage was done.
Dugas and his family were condemned for years. In Randy Shilts’ seminal book on the AIDS crisis, “And The Band Played On,” Dugas is referenced extensively and referred to as a “sociopath” with multiple sexual partners.
In 1987, the National Review referred to him as the “Columbus of AIDS,” and the New York Post called him “the man who gave us AIDS” on its front page.
“We were quite annoyed by that, because it was just simply wrong, but this doesn’t stop people from saying it, because it’s so appealing. You know, ‘The man who brought us AIDS.’ Well, if it were true, it would be annoying, but since it isn’t true, it’s even more annoying,” said Dr. James Curran, dean of Emory University’s Rollins School of Public Health and co-director of the university’s Center for AIDS Research.
Curran, who was not involved in the new research, coordinated the AIDS task force at the CDC in 1981 and then led the HIV/AIDS division until 1995.
“The CDC never said that he was patient zero and that he was the first person,” Curran said of Dugas.
“In addition to the potential damage to his reputation, it was also a damage to scientific plausibility. That there would be a single-point source to start the epidemic in the United States is not very likely. It’s more likely that several people were infected,” Curran said. “I think that the concept ofpatient zero has always been wrong and flawed, and scientists never said it.”
Dugas died in 1984 of AIDS-related complications. Now, more than 30 years later, scientists have used samples of his blood to clear his name.
Going back in time with blood
For the new research, Worobey and his colleagues gathered archival blood samples in New York and San Francisco that were originally collected for a hepatitis B study in 1978 and 1979. The samples came from men who had sex with men.
The researchers screened the samples and noticed that “the prevalence of HIV positivity in these early samples from hepatitis B patients is really quite high,” Worobey said Tuesday.
From the samples, the researchers recovered eight genome sequences of HIV, representing the oldest genomes of the virus in North America. They also recovered the HIV genome from Dugas’ blood sample.
As many of the samples had degraded over time, Worobey’s lab developed a technique called “RNA jackhammering” to recover the genetic material.
The technique involves breaking down the human genomes found in the blood and then extracting the RNA of HIV to recover genetic data about the virus, an approach that’s similar to what has been used to reconstruct the ancient genome of Neanderthals in separate studies.
“The major contribution which interested me the most was their capacity to restore full sequence genomes from very old serum samples using the jackhammer technique,” Curran said of the new research.
After analyzing the genomes, the researchers found no biological evidence that Dugas was the primary case that brought HIV to the United States, and the genome from Dugas appeared typical of the other strains already in the United States at the time.
The researchers discovered strong evidence that the virus emerged in the United States from a pre-existing Caribbean epidemic in or around 1970.
How HIV arrived in the United States
Sequencing genomes allows scientists to take a peek back in time to determine how a virus emerged and where it traveled by examining how many mutations appear in the genome.
Scientists estimate that HIV was transmitting in humans after a chimpanzee infected a single person sometime in the early 20th century in sub-Saharan Africa. The general consensus among scientists is that HIV then crossed the Atlantic and quickly spread through the Caribbean before it arrived in the United States, probably from Haiti, Curran said.
Scientists at the University of Oxford published a separate study in June suggesting that HIV spread through specific migration routes — based on tourism and trade — throughout the past 50 years as it made its way around the world.
The research team behind the new genetic analysis now hopes that its findings may lead to a better understanding of how HIV moved through populations — and how blaming a single patient for the pathogen’s rise remains troublesome.
“In many ways, the historical evidence has been pointing toward the fallacy of this particular notion of patient zero for decades,” Richard McKay, a historian of medicine at the University of Cambridge and a co-author of the new research, said at Tuesday’s news conference.
“The study shines light from different angles to better understand the complexity of an important period in the past,” he said. “In view of this complexity, one of the dangers of focusing on a single patient zero when discussing the early phases of an epidemic is that we risk obscuring important, structural factors that might contribute to its development: poverty, legal and cultural inequalities, barriers to health care and education. These important determinants risk being overlooked.”
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