HIV/AIDS Generation Survivors

[Mavica]

 

 

 

I’m in Florida, USA, today and was out with friends for the evening.  Returning home I tuned-in to cable network TCM – Turner Classic Movies.  Philadelphia (1993) was the feature movie.  I’ve always had an emotional response watching the movie.  At some points, tears … always.  Tonight was no different. 

There are those of us here, not all, who are old enough to have lived through the terror of HIV/AIDS crisis starting in the early-1980s.  To say I was sexually active those years is an understatement. Somewhere in the range of 30 guys I’d slept with didn’t survive, as far as I know. I survived, and I’ve often wondered: why was I spared? A generation of gay life was wiped out. 

44 million people have died from HIV/AIDS thus far. Half have been men. 

I’m sometimes triggered by posts on these forums suggesting money boys, garotos, whomever are pressured to or paid extra to have unprotected anal sex, to perform acts which place them … and many of us … in danger. 

The reminder that, "Those who cannot remember the past are condemned to repeat it," is as applicable today as ever before. 

[vinapu]

10 hours ago, Mavica said:

 

I’m sometimes triggered by posts on these forums suggesting money boys, garotos, whomever are pressured to or paid extra to have unprotected anal sex, to perform acts which place them … and many of us … in danger. 

 

even more horrific are some profiles on Grindr advertising barebacking services

[bkkmfj2648]

10 hours ago, Mavica said:

There are those of us here, not all, who are old enough to have lived through the terror of HIV/AIDS crisis starting in the early-1980s.  To say I was sexually active those years is an understatement. Somewhere in the range of 30 guys I’d slept with didn’t survive, as far as I know. I survived, and I’ve often wondered: why was I spared? A generation of gay life was wiped out. 

You are not alone @Mavica.  I totally empathize with your sentiment.

That was an AWFUL period to live through.  I lost around 50% of my friends in those years and spent many a visit at Sloan Kettering, St. Vincent's Hospital in Greenwich Village, Mount Sinai, and many others.  You had to helplessly watch your friends die a painful death because in those years there was only FDA approved AZT available - which was very toxic.  Alternative solutions were only available in Mexico or over in Europe -  If you haven't seen the movie, Dallas Buyers Club, I highly recommend it as it dives into this dilemma. 

Fortunately (or unfortunately) my sex life in those years (1982 - 1990) was stunted, because the bath houses, saunas, sex clubs, warehouse district venues that were used for sex were already closed down by the NYC Health Department.  The only type of venues that were allowed were safe sex clubs and that is how I started my coming out years - at the New York Jacks - which probably saved my life.

So, in those formative years, I became a part-time activist - fighting with the government to obtain proper AIDS research funding and to get the FDA to allow for alternatives to the toxic AZT.  Eventually we prevailed, but after much death, heartache and frustration.

11 hours ago, Mavica said:

I survived, and I’ve often wondered: why was I spared? A generation of gay life was wiped out. 

@Mavica I also went through this pain and I discovered that there were therapy groups that were created to deal with this dilemma - which was given the label; "survivor's remorse" or "survivor's guilt".  This guilt lingered with me for so many years that when in 1998 I saw that the Denver Public Health was looking for volunteers for a potential AIDS vaccine - I jumped at the chance to volunteer my body to participate.  It lasted for 3 years and I had to conclude the last year of the trials in Amsterdam (which was administered by the GG&GD), because in May 1999 I had left the USA for Rome, Italy.  My trial participation ended in November 2001.  Then in early 2002, it was revealed to us if we received the placebo or the vaccine, AIDSVAX B/B.  I was told that I received the vaccine.  Unfortunately, the vaccine was deemed to not demonstrate protective efficacy.  

By participating in this vaccine trial it greatly helped reduce my survivor's guilt.  I was asked by Denver Public Health if I would volunteer to go on the 9News (KUSA) to state to the media why I would volunteer to do this.  At the time I worked for a conservative bank - so we braced the clients who were assigned to me about this news interview (as it would be like a public coming out and to reinforce that I was not HIV positive to said clients).  On TV I simply stated, "I am volunteering myself to this vaccine trial because I want to give back to the 50% of my friends who died from AIDS".

VaxGen gave all of us participants a card that we were to show to HIV testing centers in rare cases that we would falsely test positive - as they would then be instructed to perform a different type of test which would reveal our true HIV status.  In all of the years that I was tested for HIV I never tested "falsely positive" or "positive".  Hallelujah!

[Ruthrieston]

I worked as a nurse on one of the biggest HIV/AIDS wards in St Stephen's Hospital in London in the 1980's. We had to recruit gay volunteers to help us transport patients as no porters or ambulance staff would touch our patients. The volunteers even had to take the bodies of the dead to the mortuary, and we had to pack and ligate the bodies and put them into big plastic bags. There was so much prejudice and fear. One day a fellow nurse who had only been working on the ward for two weeks was with me making up a bed for a patient waiting on a trolley in the corridor when I looked up and saw that his lips were turning blue, a sign of PCP, a common cause of death. I persuaded him to get into the bed. I went to call his parents who lived in Manchester and his father answered the phone and when I told him his son was dying he shouted "Let the faggot die!" and slammed the phone down. He had only been in London for two weeks so he had no friends, so when my shift ended at 3.30pm I went and sat with him, and he died at 7pm, he was 24 years old. We all lost too many friends. The person who helped most was Princess Diana who was often filmed and pictured visiting patients and holding their hands and hugging them, which proved that AIDS was not transmitted just by touch. 

[PeterRS2]

On 7/10/2026 at 11:08 AM, Mavica said:

The reminder that, "Those who cannot remember the past are condemned to repeat it," is as applicable today as ever before. 

So true! I lived and was sexually active throughout those ghastly years. But I was living in Asia where there was not the same bombardment of news about AIDS and all the newspaper obituaries as in the USA. I do not know how many Asians died but the safe sex message did eventually get out and a great many gay men paid attention to it. I was based in Hong Kong and visiting Bangkok at least half a dozen times a year. The bars were all open and some packed at the week-ends. The boys in those I attended had all been instructed about condom use being vital. After a few years, I was saddened when i learned that one guy I had met years earlier had died of AIDS.

The situation in Japan was different. Japanese sauna owners, for example, considered AIDS a western disease that would not affect them, even though westerners like me were often there. There was no safe sex message that I noticed (although I could not read Japanese). Eventually the owners took note and the government finally decided in 1985 to close all the gay saunas. But it was way too late. I had three friends who all had birthdays around the same day in October. I attended their birthday party in, I think it was, 1987. It was a wonderful evening and I paired off with a really hot young Japanese. Two or three years later I was totally shocked to learn that four who attended that party - included all three of the birthday boys - had died of AIDS. 

[PeterRS2]

13 hours ago, bkkmfj2648 said:

in those formative years, I became a part-time activist - fighting with the government to obtain proper AIDS research funding and to get the FDA to allow for alternatives to the toxic AZT.  Eventually we prevailed, but after much death, heartache and frustration.

1 hour ago, Ruthrieston said:

I worked as a nurse on one of the biggest HIV/AIDS wards in St Stephen's Hospital in London in the 1980's. We had to recruit gay volunteers to help us transport patients as no porters or ambulance staff would touch our patients. The volunteers even had to take the bodies of the dead to the mortuary, and we had to pack and ligate the bodies and put them into big plastic bags. There was so much prejudice and fear.

I consider @Ruthrieston and @bkkmfj2648 angels for all they did in those dreadful years. I am sure there may have been others on this forum who did as much - and they too are angels. Thank you with all my heart.

[Ruthrieston]

This is bringing back so many memories for me. A few years after I started working at St Stephen's Hospital I was appointed as a Clinical Nurse Specialist in HIV/Aids and managed a team of Specialist nurses, social workers and counsellors. I then joined a campaigning/protest group called the Sisters of Perpetual Indulgence, who dressed in traditional nuns habits, the rules were "no makeup and no underwear" and we often worked to organise protests with Outrage. The Sister who moved from Australia to London and started the group there was called Mother Ethel Dreads a Flashback, and my name was Sister Immaculata Worksurface.  When the police tried to arrest the protestors they always went for Outrage first and just looked at us and we lined up in twos and walked away. Then I was funded to attend one of the first International AIDS Conferences taking place in Canada. The week before the Conference the Canadian Government cut the funding for AIDS work. The Sisters from Australia, France, America and Britain planned a protest. At the opening of the Conference the Health Minister was standing at the podium on the stage to make a speech and the Sisters were spread out across the building and as she started to speak we all stood up and turned out backs on her. No surprise that then the whole conference hall stood up and also turned their backs on her. Within a couple of weeks the funding was restored by the government. 

[a-447]

When the  AIDS crisis in America first hit the headlines in Japan, the gay establishments  - sauna, bars, etc - immediately closed their doors to foreigners. I suddenly noticed that at the 2 sex cinemas I frequented - in Ueno (it's still there) and in a place called  Kudanshita (now gone AFAIK), I went from being pounced upon, mauled and manhandled the minute I walked in, to getting no action whatsoever. Nothing!

The general belief was that only foreigners got AIDS and that somehow, Japanese were immune.

I even had people telling me that there were no cases of AIDS in Japan. (Then again, lots of people used to tell me that there were no gays in Japan, either!(😂😂)

At the time, I was a member of 2 sex clubs  - one in Ueno and the other in Koenji (just out of Shinjuku). These were a haven for me, as being a paid up member and a frequent attendee, all the guys knew me and the fun continued unabated.

This narrow -mindedness and sheep-like behaviour is alive and well in Japan, even today.

[bkkmfj2648]

@Ruthrieston - wow many thanks for sharing those incredible memories. 

I remember seeing different variations of the Sisters of Perpetual Indulgence.

The closest interaction that I had with them was during my years when I lived in Denver, Colorado and I was a member of the local RMR - Rocky Mountain Rainbeaus.  A couple times during the year there would be a Square Dancing convention and/or Gay Rodeo events, and often members of the Sisters of Perpetual Indulgence would show up at these events.  I personally was able to Square Dance with some of them and I saw with my own eyes some of them riding animals at the Gay Rodeo events.  It was something that you could never forget.

 

 

 

[PeterRS2]

I think for younger readers of this forum who may not be fully aware of the detail, a very brief history might be useful.

In the 1980s I was visiting New York for 3 or 4 days' business every year. Understandably there was a major fear of AIDS after the first outbreak was discovered among gay men in 1981, initially in New York and soon after on the west coast. (I realise there was a 14-year old boy from St. Louis who was actually the first to experience symptoms of HIV in 1966 and who died in 1969. His symptoms mystified doctors. It was not until 1987 that he was discovered to have died of AIDS). Although the doctors had noticed several opportunistic infections in patients, Kaposi's Sarcoma became the generic name for the first few months. In May 1982 the New York Times changed this to GRID - Gay-Related Immune Deficiency - significantly reinforcing in the public's mind that this was an illness that affected only gay men, a sentiment that became stuck in the public mind even as it soon became apparent that HIV was spread by bodily fluids in the whole population. It was only in September that the CDC used the acronym AIDS. That same month the US Congress denied funding for research. By December it was realised that a baby had died of AIDS after one of its blood donors had died of AIDS. By 1985 gay men were prohibited from donating blood.

It was in May 1983 that candlelight vigils were held in San Francisco and New York by AIDS patients. The photographs which appeared around the world finally brought a knowledge and eventually an understanding of AIDS to many countries. It was not until October 1984 that San Francisco ordered all gay bath houses closed. New York followed in 1985. When Los Angeles tried to enforce a ban in 1985, the owners took legal action to try and keep them open. The court sided with the owners in 1986. Long before this it had become obvious early on in The New York Times that obituaries placed by the families of those who died never mentioned AIDS. "After a long illness" became one common description.

AIDS would have been a ghastly pandemic at any time. Yet for gay men especially the timing could hardly have been worse. The Stonewall Riots had taken place in 1969 quickly followed by the Gay Liberation movement. Although initially limited to the USA, gay men finally began to feel a degree of freedom they had been denied for so long. Many moved from the more conservative central USA states to San Francisco where gay men were much more welcome. With the advent of HIV/AIDS, many in the gay movement were against any of their new freedoms being curtailed. Hence the strong advocacy that bath houses should remain open.

Here in Asia there used to be a weekly magazine AsiaWeek. Sometime around 1985 it devoted a major double page article to HIV/AIDS, no doubt inspired by the Hong Kong government's first official reporting of its HIV cases. In that year, one Thai student was known to have contracted AIDS but he had studied abroad. That AsiaWeek article implied that, like Japan, AIDS was a foreign import. There was even a paragraph suggesting that owners of Thai gay venues were considering banning entry to Hong Kong residents (although how that could have been enforced was never spelled out)! It was, though, indicative of the fear that was now rampaging around the world. A disease which, if caught, meant certain death was not what anyone wanted to hear.

The advent of various drugs was fast tracked. It still took until 1996 when a Taiwanese-American scientist/virologist discovered the combination antiretroviral therapy that would finally transform AIDS from a deadly to a chronic illness. 

A question that is often posed concerns the attitude of President Ronald Reagan to AIDS and whether, had his administration acted more quickly, the effect of AIDS could have been considerably reduced. Reagan's cabinet was ultra-conservative and refused to act on what it also considered a gay illness. It rejected the CDC request for new funding and at the same time severaly reduced the CDC's budget. It was only in October 1985 when Rock Hudson, the closet gay actor friend of former actor Reagan, died of AIDS that the president mentioned AIDS for the first time. By then over 12,000 Americans had died and there were another 15,000 cases in the USA.

[bkkmfj2648]

Thanks PeterRS for including this additional background information.

I remember very well that era of Ronald Reagan and "Just Say No" Nancy Reagan.

https://lgbthotline.org/documentary-review-rock-hudson-all-that-heaven-allowed/

The gay community put enormous pressure on Rock Hudson to come out of the closet and to help the larger gay AIDS research and funding movement.  He was close friends with Nancy Reagan and she refused to help him - in his moment of dire need - when he went over to Europe in 1985 to continue his experimental HIV/AIDS treatments (HPA-23) when he needed urgent White House intervention which was refused.

HBO produced a very illuminating Rock Hudson documentary in 2023 that discusses all of this.  The trailer can be seen at:

 

 

[PeterRS2]

One surprise of those days of Reagan's ultra conservative agenda was his late-1981 appointment of another ultra conservative as surgeon general - C. Everett Koop. That appointment was welcomed by the religious right but roundly condemned by liberals because of his very conservative views.

Yet he was later to say that he had wanted to speak out much earlier about the dangers of HIV/AIDS but was prevented from doing so by the administration. Whether you actually agree with that or not - I am not sure I do because if he did feel strongly about being muzzled I think he should have resigned - the fact is that he did speak out very forcibly about how HIV was spread sexually as well as in other ways. I can recall landing in San Francisco and turning on the television once i was in my hotel room. There on screen was the rather austere face of Koop talking about AIDS transmission and specific dangers. I especially recall being astounded that he talked about rimming! I believe this was around the Spring of 1986. Something in him had definitely changed!

He himself later wrote in 1987 - 

"I am the surgeon general of the heterosexuals and the homosexuals, of the young and the old, of the moral or the immoral, the married and the unmarried. I don't have the luxury of deciding which side I want to be on. So I can tell you how to keep yourself alive no matter what you are. That's my job."

[PeterRS2]

5 hours ago, bkkmfj2648 said:

in his moment of dire need - when he went over to Europe in 1985 to continue his experimental HIV/AIDS treatments (HPA-23) when he needed urgent White House intervention which was refused.

I recall that he chartered an Air France 747 to fly him back from Paris. Apparently he had been diagnosed a year earlier but hardly anyone knew about it.

After his appearances on Dynasty when it was obvious he was ill, he and his publicist were still able to quell rumours. It was when he appeared with his former co-star Doris Day who had begged him to appear with her at a press conference in early 1985 that the world realised his gaunt look and general appearance meant he was much more seriously ill. Then it was almost impossible to disguise the truth.