AIDS 'cocktails' are saving lives, but some HIV-positives thrive without them

WILLIAM GILPIN

In the 20 years since Canada's first case was reported in Windsor, Ont., Acquired Immune Deficiency Syndrome (AIDS) has devastated our gay communities, particularly in the larger cities. Since far fewer people with AIDS are dying now than a decade ago, it is tempting to conclude that current treatments have the situation under control. For a significant, but uncounted, number of patients that simply is not the case.

Establishment medical practitioners seem convinced the status quo -- generally treatment with the protease inhibitors commonly referred to as "drug cocktails" -- is satisfactory. "The therapies in use since 1996 have resulted in unbelievably dramatic improvements in people's health," says Dr. Irving Salit, director of the Immunodeficiency Clinic at Toronto General Hospital. "The death rates from HIV have dropped more than 90 per cent." And that achievement must be celebrated, especially in light of the fact that AIDS deaths are at their lowest level since Statistics Canada started tracking them 15 years ago. But at the same time, that focus marginalizes those of us whose histories don't fit that of the typical HIV-positive patient.

The TGH clinic currently treats about 1,500 patients, the majority of whom (about 80 per cent) opt to go on the drug cocktail. The main criterion for beginning a drug regimen is a declining T-cell count -- a decrease in the number of T-helper lymphocyte cells (a subtype of white blood cells) that are active in the normal immune response. Salit acknowledges that some side effects are commonplace at the beginning of treatment, but says they usually diminish over time. "How they feel and how they function day-to-day," he says, "is, 95 per cent of the time, not affected by their treatment." My experience, like those of many friends and acquaintances, does not support such a positive, pharmaceutical-based assessment.

Photo: Lorne Bridgman for Maclean's

Gilpin wishes more was known about people like him who don't fit the typical HIV profile

I, like most people living in developed countries, grew up with an unquestioning faith in modern medicine. While I continue to respect most of what my own doctor tells me, I am wary of his views regarding AIDS and HIV (human immunodeficiency virus, the retrovirus associated with AIDS). On Feb. 6, 1986, shortly after my 27th birthday, my doctor told me I was HIV-positive. The fact that he had had me tested without my consent bothered me less than being told that, more than likely, I had only six months to live. There were then no medications for the condition. People were dying in great numbers. There seemed to be no hope.

I had only recently begun to enjoy a period of happiness and optimism. Typically for an evidently gay male of my generation, I was not accorded much dignity in adolescence. To survive those years, I withdrew socially. With my doctor's news, my shaky self-esteem collapsed again. The fear and stigma associated with HIV and AIDS were considerable at that time. A common cold or minor rash were cause for panic. My upbringing had conditioned me to be proud, to never admit to needing help. It was impossible, in other words, for me to speak to anyone other than my doctor about my health situation. For more than 10 years I kept silent on the topic. I floated aimlessly in a deep depression.

A year after I tested positive, the drug AZT became available for HIV patients. I was feeling fine, physically, and decided in my risky defiance not to begin any treatment until I started displaying symptoms of illness. However, I saw some dear friends who were also asymptomatic HIV-positives go on the drug and rapidly decline in health, suffering horrible deaths. Even to this day, through my 16 years of being HIV positive, I have never taken any AIDS drugs, and have never experienced any AIDS-related illness. I continue to enjoy good health. My T-cell count does fluctuate but I no longer panic, or think much about it. The conventional wisdom, which Salit supports, is that two to five per cent of HIV-positives are so-called "slow progressors," but almost all eventually progress to AIDS. At 16 years and counting, I must be a very slow progressor.

So why have I bucked the odds and remained healthy for so long without resorting to the standard drug therapies? I just know that in order to survive -- and thrive -- I have needed to imagine myself as a person with purpose. Someone who must enjoy life fully. I have needed to believe that I do not have any illness of any kind. Simple, rewarding activities like carpentry and gardening have helped nourish a sense of self-worth and an optimism. I do not do anything special to boost my immune system other than eating nutritious food, exercising regularly and sleeping well. Nothing extraordinary. Just basic common sense. Is that all it takes? Am I any different in that respect from the less fortunate who, whatever their outlook and despite taking the drugs, have succumbed and died? I wish we knew, but cases like mine seem to be viewed simply as an aberration that will soon come to an end -- in full-blown AIDS.

Also not adequately understood are members of another group: people who have received AIDS drugs, been unable to tolerate their side effects, gone off them and returned to "normal" health. "The drugs have caused more problems than good for me," says Wayne Midgley, a 40-year-old Toronto hair stylist. He tested positive for HIV in 1985 and has been on countless drug regimens. For four years now, he has resolutely avoided treatment of any kind.

Midgley had faithfully obeyed his doctors' orders through those many years in spite of what his body was telling him. Each time he began a new drug regimen, he would experience debilitating side effects: high fevers, diarrhea, nausea, vomiting of blood, muscle spasms, temporary paralysis. In all, he counts 16 hospital stays to remedy these problems. "I would walk into Emergency at the hospital," he says, "and they would know my name and why I was there." Soon after going off a toxic regimen, he would gradually regain his health. He would then be put back on the drugs, only to get sick again. When he had bleeding ulcers in his stomach cauterized four years ago, he decided to avoid the medications from then on.

Typically, T-cell counting exercises a significant amount of influence over HIV patients, but Midgley has reason to be jaded about it. "To me," he says, "the numbers don't mean anything anymore. They've gone up and down -- from the 600s [normal range] down to below 100 [dangerously low] and everywhere in between." They seem to have little if any relation to how he is feeling.

Midgley is clearly fed up with identifying himself closely with HIV and AIDS 24 hours a day. A few years ago, he served as an "AIDS buddy" to two different fellows, spending time with them and providing support as they went on the drug cocktails, suffered rapid and excruciating declines, and died. He has attended conferences and support groups and refuses to see himself in the same light as the despondent men in wheelchairs he's seen at such events. His strength of character has brought him through hell and into a brighter place. Midgley is employed once more, full-time, and has an active, happy social life. "When I was dealing with the side effects of the drugs," he says, "I was so sick, all my hopes and dreams were tossed aside. But now that I'm healthy again, I can think of my future."

Peter Richtig sees something else -- the signs of some very disturbing health trends among patients on the AIDS drugs. The executive director of the AIDS Committee of Durham Region in Oshawa, Ont., Richtig has chosen to remain on medications himself. "I know that when they stop being effective, my viral load skyrockets, my T-cell count plummets and I do get sick." He tested positive for HIV 11 years ago and has received medications for most of that time.

However, while he realizes patients are living longer because of the efficacy of the protease inhibitors, he has observed that as a group they are now "more likely to get pancreatitis, diabetes and suffer strokes and heart attacks." While their evidence is still anecdotal, he and other front-line workers in AIDS service organizations across Canada also feel they are seeing a growing incidence of cancer among HIV-positive patients. It was there before, among patients whose immune systems were depressed by their condition, but not in the same numbers. "We had three clients at our agency die of cancer last summer," says Richtig, "and have another four currently living with it." He can't help wondering if lengthy exposure to the toxicity of the drugs is a factor. "I would like to see more research done on the long-term effects of these drugs," he says.

In the meantime, those patients who buck the tide, who don't fit the typical HIV/AIDS profile, don't have much of a voice. Over time, AIDS service organizations have moved away from their grassroots, activist origins and accepted limits on their advocacy activities in order to qualify for charitable funding. They are losing the freedom to speak out. "We now say what the funders are willing to hear," Richtig says gloomily, "not what our gay clients need us to say." At the same time, gay communities have shed the militancy of the tiny minority who fought courageously over the past couple of decades for the rights now taken for granted. With gay pride parades reduced to blandly risque tourist attractions, and with the banal Ellen Degeneres and Queer as Folk on television, many gay people feel everything is finally going their way. And while that is true for the majority, it leaves many of us on the outside looking in. "We need," as Richtig says, "to recapture a sense of urgency and advocacy in the AIDS movement."

William Gilpin is a Toronto garden designer and freelance writer.