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The turning point
For long-term survivors, 1996 was a watershed year: with the advent of new treatments, HIV was no longer a death sentence. Here, David Menadue rifles through the PL archives to look back at some of the miracles and challenges of the day.
In 1996, along with Bridget Haire, I became co-editor of Positive Living. It was an important year for the masthead. Having started out as a Victorian publication, in September, PL became a nationally syndicated magazine.
Our first front-page story gave voice to critics of Australia’s Third National AIDS Strategy. Many felt it didn't go into enough detail about the role community organisations would need to play in educating people about the merits of taking the new treatments and the importance of adherence.
The early drug regimens were complex, often involving a handful of pills taken multiple times a day — some before food, others after. “Without extensive public education in HIV communities, it is believed that only a minority of people living with HIV/AIDS will take up treatment options,” read the piece.
From the beginning, treatment developments featured prominently in Positive Living. An early interview with treatments activist Martin Delaney from San Francisco’s Project Inform highlighted the difficulties that people were having with the new protease inhibitors saquinavir and ritonavir — both caused awful gastric upsets and, when taken as a liquid gel, ritonavir tasted terrible. “It is a very effective drug for those who can tolerate it,” Delaney told PL. “But the rate of side effects reported are higher by far than any drug you’ve ever seen in the epidemic.”
Another new treatment causing people problems was efavirenz. While on it, people felt spaced-out for weeks; and when asleep were assailed by wild, vivid dreams. I wrote about my own experiences with the drug. “I have experienced a pronounced wooziness,” I wrote. “I first started to notice it when getting out of bed in the morning and my gait was like I was still drunk from the night before.” I reported on this as a warning to others but received a bit of flak from doctors as a result. They said I needed to be careful not to relate my experience as common as there wasn't trial evidence of such side-effects. Well, according to anecdotal evidence, my experience turned out to be quite common in friends who tried efavirenz after me.
Despite their side-effects, the new treatments quickly proved effective. "Jaws drop as AIDS death rates plummet" read November’s front-page headline. Thinking it was too early to see such incredible results, Professor John Kaldor from the National Centre for HIV Epidemiology and Clinical Research (now the Kirby Institute) postulated on whether the drop in deaths was truly the beginning of a treatment-related decline or some kind of statistical aberration. Fortunately, the former proved to be the case. As the article stated: “There seems to be a consensus among clinicians and people living with HIV/AIDS that people who are taking up combination therapy are faring considerably better.”
And so — for the very first time since the epidemic emerged — positive people began to live in hope: those of us who had survived the horrors of the ’80s and early ’90s were suddenly presented with … a future. For years, it was drummed into us that if you had AIDS you’d die. Now, that wasn’t necessarily the case. For some, the surprise reprieve was a tough concept to embrace so I wrote about the profound psychological impact that the so-called ‘Lazarus effect’ was having on AIDS survivors like me.
“Like it or not, [HIV’s] presence in our bodies has almost become a part of our identities. There has hardly been a day gone by when questions of mortality, illness or disability related to the virus have not crossed our minds. To be suddenly given the power to unlock the angst and fear about our futures is actually quite confronting. Curious as it might seem, I think that some people will have difficulty ‘giving up’ their illness if that is to become a possibility; to start to re-evaluate our lives without the stymie of HIV. Some are toying with the idea of not even taking drugs like protease inhibitors because it interferes with their preconceived view of what life’s path is meant to be for them. This might seem like a death wish, but the scars which HIV has etched in our psyches cannot be explained easily.”
My piece ended on a sobering note: “With all this promising news, I’ve had three funerals to attend this month. The epidemic is not over and the grief, loss and angst which AIDS has brought will probably never leave this generation. Dealing with the survivors of an epidemic of the proportions we have seen will be no easy task.”