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Anna Maria Tremonti: I have Ron Rosenes with me now. He's a community activist and a researcher living with HIV since the early eighties. Many of those diagnosed with HIV in the eighties, including Gaétan Dugas, have died. Medical advances mean that many others survived. Those still living with HIV from that era can relate to the stigma that was attached and what was going on and how Gaétan Dugas’ name was used. Ron Rosenes, hello.
Ron Rosenes: Good morning, Anna Maria.
As you listen to Richard McKay—and it's true, we've so much to talk about—but essentially, Gaétan Dugas was vilified publicly as this person who was believed to have brought this illness because there was this simplification that said this illness came with one person into North America.
It always struck me as odd and nonsensical that we would attribute HIV infection to one individual and vilify that person as a vector of disease. I think it's really easy, in fact, in hindsight to look back and demonize a number of people whose thinking around the origins of the epidemic and sources of infection all proved to be faulty. And I say that as somebody who was living with HIV since the very early days of the epidemic and I remember over the years thinking that we shouldn't really be that hard on Randy Shilts. He was one of the first people to write about this and he did so in 1987. For me, when I look back now, I think the best analogy to that time is to think about it as being in the fog of war and it was very difficult for us to make sense of anything. And you know Randy himself succumbed to HIV—
—and his illness in 1994.
Well, and we should point out, Randy Shilts was with the San Francisco Chronicle. He thought when a disease that no one could name and understood began to show up, he actually convinced his newspaper to make him a full-time reporter to cover HIV/AIDS because he thought it was such a big story and it needed full-time coverage. So he was trying to make sense of things.
He was but when we look back now, we find many examples of cultural theorists who debunked the myth, including Canadian professor and filmmaker John Grayson who made the 1994 film “ZERO PATIENCE”, a bawdy fantasy musical (see video below) about the ridiculousness of blaming a sole individual for starting the epidemic. I recall reading Susan Sontag’s essay “Illness as Metaphor” which questions our need to impute infections to moral weakness so that we can blame people for getting sick – a real eye and brain opener for me. I remember hearing about the Denver Principles that were articulated in 1983 that said: we are not AIDS sufferers or victims, we are people living with HIV ……
Also the blaming. I want to get to that because it was easy then for the rest of the media to pick up on this. And for society at a time when it was looking to blame and it was scared and it was very homophobic, it was really—
It was all of those things.
It was part of that swirl. Talk to me a little bit about that.
It was all of those things. So when I talk you know a little bit about how it felt, you know the fact is that at that point in time, there was so much that we didn't know. I mean we really, really thought that AIDS was being caused by a constellation of events if you will or a collection of illnesses and opportunistic infections that were being caused by a constellation of factors. And we didn't even know that there was a single causative agent. So when we look back, we have to remember that this was a time when for example, there was a fight that went on for two years between the French, led by Luc Montagnier and Robert Gallo in the United States, really fighting over the intellectual property rights of who had discovered this virus. Then we had President Ronald Reagan who for seven years wouldn't say the word “AIDS” because those people didn't vote. So this was a time when people were dying by the tens of thousands—if you look at the United States and Canada—over that period. When we were put away in hospitals where people came to us double gloved and double masked, where we used to make gallows humor jokes about the only food we might get in the hospital was flat food like pizza, which somebody could slide underneath the door. So this was a really, really dark time and even our same sex partners at the time were often prevented from visiting us or having proper visitation rights at hospitals that supported very unjust policies.
Your partner died of HIV/AIDS.
He did. We were together for 15 years, beginning in the late seventies and he succumbed in 1991.
And you were diagnosed—like in the early days as well.
Well, he was diagnosed in 1983. He was in an early study at the University of Toronto and they were not supposed to give the results because there was nothing you could do for people back in the day. But they did give him the result and we both knew that we had picked up HIV in New York. You know people need to bear in mind, regarding the whole notion of origin here, that for most of the 1970s, this virus was circulating particularly in cities like New York where many people gathered and where this was a time of great sexual liberation, not just gay sexual liberation. As gay men we don't actually own promiscuity. So the virus had been circulating and I didn't actually get a confirmatory test until the mid-eighties but I know that I've been living with this virus since the very early days.
Well, that was another thing that we learned about, that it had an incubation period.
Exactly. So it was incubating in New York for about 10 years. And my understanding is that by the time people became symptomatic, there were roughly one in two gay men in New York who were already infected. People were dying in great, great numbers while other people were either dithering at the political level or activists were organizing in an amazing fashion to get the scientists moving. And you know people can read about it. There's a new book coming out by David France and it really goes into amazing detail about all of the political and community activism that was taking place at the time to get the scientists moving and to get them thinking how to get a research agenda going.
In fact, breast cancer, people with breast cancer took a page from AIDS activists to force more research on disease.
I believe they did. I really truly—
Yeah, they did because AIDS activists really were very—they would show up at conferences and demand that scientists and pharmaceutical companies pay attention.
Well, not only were we the canaries in a coal mine, but in the 1989 AIDS conference in Montreal, people like Tim McCaskill who still lives here in Toronto, led activists on to the stage and forced their way into these scientific conferences and it was in fact community activists who said we've got to read up on what's going on here and who gave the idea to some of the scientists at the NIH, the National Institutes for Health in the US, that they needed to look at an approach that might require the use of multiple drugs. We were all being offered in 1988, AZT, the first drug in toxic doses. It killed more people than it saved.
And you're an anomaly. You have survived a very long time.
You know I have an odd destiny, I suppose. There are lots of people like me. I'm certainly not alone. But through a combination of both genetics and good fortune, I am both a long term survivor and I'm certainly a witness. I'm a witness both to a huge and inestimable amount of loss, personal loss, but I'm also a witness to phenomenal scientific advances. Today, I think I'm a pioneer because I'm now in the first cohort of people living and aging with HIV and encountering a whole new set of really unexpected and unanticipated challenges.
Sounds like I should have you back to talk just about that.
Oh, that's another show for sure.
Okay. Ron Rosenes, thank you very much for coming in.
My pleasure. Thanks, Anna Maria.
Ron Rosenes has been living with HIV/AIDS since the early days of the epidemic. He's in Toronto. And we're going to pick up on this now, Gaétan Dugas was not the first and will not be the last so-called patient zero associated with a medical outbreak. There's an important medical need to track outbreaks to their sources. The practice of identifying a patient zero does raise ethical questions.
Listen to the whole program on cbc radio's The Current, here.