One of the first 400

The early days of the HIV epidemic in Sydney was a frightening time. A lethal illness silently targeting and striking down young, healthy promising young men. In this terrifying and dire time, we knew so little about the condition. Who was at risk? Who was next?

A young David Cooper, on a travelling National Health and Medicine Research Council (NHMRC) Fellowship, had already witnessed similar alarm in Boston. It wasn’t long after his return to Sydney in 1983, that he was leading the charge to slow or halt the new retrovirus called Human Immunodeficiency Virus (HIV).

A year later alongside seven colleagues and allies, as the newly minted Director of the NHMRC Special Unit in AIDS Epidemiology and Clinical Research, Dr David Cooper established one of the world’s first prospective studies of HIV in gay men.

The Sydney AIDS Prospective Study (SAPS), also known as the Sydney AIDS Project, ultimately recruited more than 1000 participants drawn from six enrolment centres in Sydney. All were anonymous. There’s no list of names.

David Polson was one of 386 gay men in the study, who was already HIV positive. He was among the very first group of people tested for HIV antibodies in Australia. As one of the most vocal proponents of ‘the first 400’ today, David was surprisingly unaware of the significance.

“I wasn’t aware of it to be very honest. I was part of the study in 1984 when I tested positive. But I wasn’t aware of the notion.”

He shared how he first heard the phrase ‘the first 400’:

“I was at a World AIDS Day function at the Powerhouse which had a timeline which started at 1985. Professor Andrew Carr was there, and I said, ‘Andrew, this is wrong, this timeline is wrong. And you know it. You know, I was diagnosed in 1984.’

“He said, ‘Polly, you are part of the study, and you are part of the first 400 people who were diagnosed in 1984. That’s why it’s not counted, because the HIV test was only really approved in 1985. So the study you were on in 1984 hadn’t been finalised.’

That’s why I only found out about that years later. I’ve been using that phrase ever since. I knew I was in that study, but it was only then that I realised that I was one of a group of 400 at that time.”

Despite being part of this pivotal point in history, David knows no one else in person with this shared history, “because none of us knew who we were. No one. Okay. I don’t know anyone. The only person I did know started the study up and he’s long gone. But who else knows who they are? And how you would find out because this was anonymous. I don’t know how you would find out.”

He describes a chance meeting again at a 2021 Positive Life World AIDS Day event with another Positive Life community member who disclosed he had also participated in the Sydney AIDS Project study.

“I said, ‘Oh, you’re one of the first 400.’

“I’ve been told that there are only 28 people who’ve survived since then, but that could be an approximation even though it came from a knowledgeable voice. There could be more, there could be less.”

Reflecting on the anxiety of that earlier time, David says: “at that time, they knew nothing else about it except it was a certain death sentence.”

A Diagnosis

“I was 29 at the time, and it was devastating. I just felt like I’d fallen down this big black bottomless pit. I use the phrase suffocating terror because that’s what I felt it was. It was just suffocating. It was just unbelievable.

“At first, I didn’t believe the doctor when he said it, yet I knew it was correct. And there was nothing. But it was worse than that. I was told I was HIV positive, but I was also told not to tell anyone else. This was because of the hatred, the vitriol, the fear, and the discrimination. My doctor said I should maybe tell two very close, trusted friends. Just don’t let it get out there.

“So at the age of 29, I was told I was dying. I had this terminal illness. I couldn’t tell anyone. There was no counselling. There were no psychiatrists, no support, there was nothing. I walked out of that surgery on my own. I felt dreadfully alone.

“I actually told four people. My cousin and her husband, they were both actors, in the business. They lost dozens and dozens of friends. I told my very close friend at the time and another female friend who died of breast cancer ten years later. So those are the four people I told, but there was no one else.

“Two weeks after I was diagnosed, my doctor rang me and said, ‘there are two medical students who are doing a study about the effects of HIV on people during the seroconversion process. Would you be interested in being in it?’ I said, ‘Yes, of course! Anything that will help improve the knowledge of this disease!’ That study ultimately became one of the most longstanding behavioural surveillance programs among gay men in the world, the Gay Community Periodic Survey.”

By 1990, David’s CD4 count had fallen from a robust 800 down to 220, just shy of the then-200 marker for an AIDS-defining illness. Brett Tindall, a researcher on the Sydney AIDS Project and a personal friend, encouraged him to seek advice from David Cooper.

“David was wonderful. He was very proficient, very warm. But he was just the doctor until I said, ‘Well, I’m Brett’s friend, and he said, ‘Ah! you’re Polly!’ And then the dynamic changed from there, the friendship grew and grew.

“He had the most amazing sense of humour. I mean, it was a obviously a very serious time, going through all those drug trials. Still through all the drug trials and untill he died, he had the most wonderful sense of humour. So many times we would be falling about with laughter.”

Drug Trials

“First of all, I went on AZT. I was really worried about that, because there was so much negative press about it at that time. David was adamant, he said, ‘look your CD4 count is so low, you’ve got to try this.’

“So I thought, ‘Okay’. And I took it home and I looked at it. ‘Okay, I’m going to have to take it.’ So I started taking it, and it was fine. It was fine for about six months, and then slowly but insidiously, some of the side effects started.

“Until one day, I got to work, and I really honestly thought I was dying. I was so sick. I rang David, and said, ‘David, I’m really really ill. I’m think I’m dying.’

“He said, ‘Stop AZT, stop, stop, stop it’. So I did. But there was nothing then, until 1991 when DDI came. All the trial drugs were vile, but DDI was the first of the vile ones.

“It came in a tablet the size of probably a 50 cent coin, and it was twice as thick. You had to take two twice a day. There were only two ways you could take them. They were that huge, and you had to put them in your mouth and chew them and swallow them.

“I did it once. It was unbelievably vile in taste. The taste was indescribable. Or you could crush it up with a mortar and pestle and mix it up with a little bit of water. There was a catch with that, because once you’d taken it, you couldn’t eat or drink anything for two hours afterwards. And the rub with that was, because when the two hours had evolved, I’d think ‘Oh, good, I can go and eat something’, but I’d feel so sick and so nauseous with just the smell of food, I couldn’t eat. Consequently for the entire time I was on that trial, I existed only on lunch. Eventually I stopped that because I developed peripheral neuropathy, and the nausea was just too much. So David said, ‘okay, that goes’, and I stopped DDI.

“My CD4s stopped plummeting for a while. I did end up getting down to a CD4 count of 32, so at the time, the drugs didn’t actually help me much. A lot of us who were in the trials simply didn’t make it through, because they were way too sick before they even started. Ultimately I ended up doing 28 drug trials. That was because of my absolute belief that I had to do it. That was my obligation.

“Not every HIV positive person did that. There’s no reflection on them for that. There was a cohort of us who wanted to do them. For 20 years I was on the trials every day. For every trial I suffered nausea every single day, because the drugs were so toxic. They were absolutely vile. Nausea was the most minor of the side effects, although it was horrible. It was so dreadful.

“Still today, I have really bad peripheral neuropathy, so that’s permanent. I also have lipodystrophy. That’s permanent. Some of these side effects like the nausea stopped, once I stopped the trial drugs. When I went off ritonavir, the migraine headaches stopped, the vomiting stopped. Every single drug had its different side effects. But the peripheral neuropathy, and the nausea stayed with me the whole time.”

Surviving and being a Survivor

As a member of the first 400, David Polson is a survivor. He puts his endurance down to a personal gritty desire to reject the conventional medical diagnostic conclusion.

He speaks of a “little voice in my head, that said to me, ‘no, no, you’re not going to die from this. It won’t kill you.’ I don’t know where it came from, but it was there.

“So I said to my doctor, ‘I’m not going to die from AIDS! it will not kill me!’ He pounds the desktop emphatically.

“I literally hit the desk like that. I think that immediate, positive response to the diagnosis set up a strong mindset to help me through. Then I backed that up with a health plan I had. Given the doctors couldn’t give me anything, to my naive, layman’s mind, it made sense, that if the virus attacked the immune system, I had to keep my immune system as strong and healthy as possible.

“I went on a healthy diet. I exercised. I meditated with a meditation phrase, my immune system is strong and healthy. I did visualisation, supplements and minerals, I gave up alcohol, and I kept that regime going right through to the trial drugs.

“I made a very positive effort to survive. I was determined to survive, I was not going to die from it. I can’t say that determination got me where I am today, the drugs did, but I think the two things combined made a very strong recipe for me still being here.

“As a survivor, I feel an obligation. I feel an obligation to tell my story, to educate people, and to persuade as many people as I possibly can to test for the virus. That way we can work towards ending HIV transmission. Getting as many people tested, getting them on medication and those at risk of HIV and not on medication, to be taking PrEP.

“I’ll be very honest. As the opportunity came to jump onto the trials, it was done for a selfish motivation, because I wanted to survive, and it was also done with altruism. If the drugs didn’t help me, I wanted them to be part of medical history that could go on, and the knowledge to help others down the track. So it was 50/50. I wanted the drugs to help me, of course, who wouldn’t? But I also wanted to be part of medical history that could help others, that was another part of the survival thing.

HIV stigma and discrimination

One could be forgiven for assuming David has been inoculated against the haunting impacts of HIV stigma and discrimination.

As a well-known figure in the NSW HIV sector, an out gay man, and a potent survivor, he presents a formidable character unbowed to public opinion. Somewhat reticently, David disclosed that he experiences HIV stigma and discrimination more readily in clinical environments than any other.

“I have experienced discrimination. Unfortunately. Even right up to 2015. Let me share three examples. The first one was fairly early on, probably around 1990. I had to go into hospital for something that wasn’t HIV related, and it was in a private hospital.

“I had to tell them that I was positive. As I was being wheeled to the operating theatre, they had six large red labels on my body with a big red, ‘HIV positive’.

“As I was wheeled down the corridor, I was asked probably five or six times, ‘are you HIV positive?’ This wasn’t a corridor full of people, but at the time, it was pretty horrible. Anyway, after the operation I woke up my room, because I heard this noise. I was still pretty groggy and I thought it must be the nurse coming in. I looked up, expecting to see the nurse looking down at me. There was nothing there. But the noise continued, and I wondered, ‘what the hell is it?’ I looked over and noticed my door has been opened, and my food tray had been slid across the floor, and the door closed.

“For three days, that happened every single meal time. My room wasn’t cleaned for three days. The only person I saw was the nurse, and she was heavily gloved up and gowned. I didn’t mind that obviously, but I saw none of the cleaning staff or any of the ancillary staff. That was the first one.

“There were other incidences, but the last one was the most disturbing because it was 2015. I was going in for an endoscopy and colonoscopy. I was in the prep room. The anaesthetist came in and said to the nurse, ‘close and lock that door!’ She said ‘why?’ He said ‘I don’t want anyone coming in and bumping me, and me getting blood all over myself and getting AIDS.’ I just couldn’t believe what I was hearing. “This from a doctor, my anaesthetist! I couldn’t believe it. I told my doctor, and he said, ‘Oh Polly, you’ve got to report that,’ so I did. But there were other doctors along the line who have said similar things.

“The third example, was this particular incident in 1992. My friend John had AIDS and he was dying. He had the horrible AIDS look, the gauntness, the grey. He was obviously very sick. I had had my appendix taken out, and was recovering, so I was also gaunt, grey, and looked like I had AIDS as well.

“We had a favourite restaurant in Bondi Junction that we used to go to. We went there to have lunch one day. When we got there, the restaurant was packed. The girl at the reception just sort of looked at us. ‘Table for two?’ and so she took us in.

“Everyone in that packed restaurant, there would have been about 200 people, everyone went silent, put their knives and forks down, their glasses down, their coffee cups down, and just looked at us. They stared and stared, as we were taken to a table. They stared and stared. Eventually, conversation started up again. But you could hear, ‘AIDS….’, ‘…AIDS’, and we couldn’t wait to get out of there. It was just a horror. That’s the worst experience I had.

“But other than that, with my friends, my family, I’ve been extraordinarily lucky with all my colleagues and in all the jobs I’ve had, where they did know I was positive. In the beginning no one knew, of course, but when I did start to come out and disclose, I never had any trouble with anyone ever. I know people who weren’t as fortunate. Personally I’ve been very lucky even though my discrimination came from the medical field, which was very sad.

“It’s so different today. I would like to quote a doctor from St. Vincent’s Hospital. He is one of the leading specialists.

“He said to me, ‘Polly, if I had a choice of a disease, I would take HIV over diabetes or over anything else. The research, the medication, and the treatability of HIV is so good, that is the disease I would choose.’

But it’s not something you could say back in 1984. Couldn’t even think of it!”

Planning to live

Today in his late 60s, David Polson remains active, independent, engaged and warm. He tenaciously and enthusiastically embraces the observation that he’s a man who is very much planning to live, rather than preparing to wrap up a full life.

“It is basic to ourselves, it’s ingrained in our brain. This sense of survival seems stronger in some people. Again, I don’t know what drives it. I don’t have all the answers. I’ve been someone who was relatively well off to being someone who was absolutely penniless.

“I made a definite plan to be where I am today with deliberate choices to build my life. I’ve planned for my present, and I plan for longevity.

“I didn’t plan all the things that had happened, but I plan to be here.”

If you’re one of the first 400 people who were diagnosed with HIV in 1984 and enrolled in the Sydney AIDS Prospective Study (SAPS), also known as the Sydney AIDS Project, please get in touch! Call Positive Life NSW on (02) 8357 8386, 1800 245 677 or email contact@positivelife.org.au

Published in Talkabout #202 April 2022