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Being Alive

Personal, Non-Scientific Reactions to the Vancouver "AIDS Cure" Conference


Being Alive 1996 Aug 5: 12

The XI International Conference on AIDS has thrown us all a curve. The good news is we might live. The bad news is we might live, might actually have to readjust to thinking of ourselves as having a normal lifespan, with the required activities of work, rent payments, relationships that go full-term. The wonderful possibilities are so very rich and exciting, but they call for some readjustments of our thought processes as people with AIDS. We've been able to contemplate-even plan for-the agony of a curtailment of our lives, of the predictable decline, pain and disorientation of illness. Apparently, the hard work is not over. This is real news.

We have all been hearing some version of this news for six months. Many of us have tried the protease inhibitors with very exciting results. Many of us have not had the results we wanted. In either case, the possibilities have been the subject of much discussion. Let me be clear: we want a medicine that stops HIV and one that restores our damaged immune systems. Those of us who are still alive will gladly readjust our life plans to live and be well. Forgive those of us who are skeptical, because we have been disappointed before. But yes, dammit, Vancouver held out the possibility of real life after HIV infection. It's difficult news for me and for all who live with AIDS. Let's embrace the hope without making the same mistakes we made about AZT. And let's never forget the 1,000,000 who have died to get us to this scientific breakthrough.

As we sat there hearing David Ho-a likely candidate for the Nobel Prize-explain that they had essentially eradicated HIV from the bodies of some 16 people in early, acute stages of infection, the complex rush of feelings that ran through all of us left us gasping for breath. Yes, the limitations are clear: early, acute infection is an extremely transitory, usually undetected stage most of us have long passed, so the conditions and requirements for this putative eradication are very different. No one knows if our 5-year old or 10-year old virus will respond the same way. In fact, Ho and his colleagues don't even know if they have really cleared the virus out of their subjects' bodies; they concede it might be hiding in reservoirs like the central nervous system or the lymphatic system. David found in his earlier research that the virus replicates itself billions of times in one day, and his model for killing off every last one of those bad boys is mainly based on statistics. In reality, PCR tests are the single piece of evidence. Ho estimates that three and a half years of treatment with the big triple combination cocktail will be sufficient to blow 'em all away.

One thing has been definitively proven by David Ho and other researchers: HIV is proven beyond all doubts to be the infectious agent in all cases of AIDS. So, for political and scientific reasons, I propose we abandon the distinction between HIV+ and AIDS. That is to say, we all have AIDS. Nobody says "I have cancer-causing factors;" they say "I have cancer." Yes, we want to distinguish between early cancer/early AIDS and late cancer/"full-blown" AIDS, but every scientist with sense now agrees on the natural history of this disease: HIV infection leads directly to AIDS. No HIV, no AIDS, unless treatment (or some genetic factor that scientists are beginning to investigate in the very-long-term survivors) suppresses this vast proliferation of HIV in each of our bodies.

Meanwhile, the research on the protease inhibitors (essential components of the 3-drug combo) has never disclosed how many people are not successful in using these new drugs. The anecdotes in this town are that saquinavir is not too hard to take, but it's hard to maintain at effective levels in the blood. And that Crixivan starts out pretty easy, but after several months some difficult side effects start to appear. I was on the clinical trial of Crixivan (Merck's indinavir), and I developed at about my sixth month a pattern of chills and fever after every dose. I had to stop taking the drug. (By the way, my CD4s went down when I stopped, but so did my viral load.) And ritonavir-don't ask! It can't be taken with many of the common drugs people with AIDS need to fend off or treat some murderous opportunistic infections. And the initial start-up period on ritonavir is really tough, with nausea, vomiting, fevers and big dangers to the liver and other organs. But it's definitely true that some people thrive on these drugs, and they report absolutely fabulous improvement in emotional and clinical terms. Others see T-cells go up, but feel too shitty to enjoy them.

And these drugs require strict compliance. The research supervisor on my clinical trial told me that if I couldn't take the crixivan on an empty stomach (now changed to allow a fat-free side dish) at the right time, I might just as well throw the pill in the toilet each time. It is thought that the billions of viruses formed each day naturally create a quick pool of genetic variation and mutations that resist the action of protease inhibitors (PIs). You can't take drug holidays with the PIs, because you might just breed yourself some multi-drug-resistant HIV.

All of this is speculation now, as research into sub-typing and genetic mapping of HIV is just getting under way. It seems to be a consensus among the researchers, however, that after about a year in your body, HIV has already created all the genetic variations that matter. My friend, Robert, who participated in a sub-typing study at NYU, was told he had 25,000 different variants of HIV in his blood stream. This immense variation, generated by the rapid replication of HIV, may demonstrate that re-infection (a matter of great interest to PWAs who are sexually active) is not a serious danger. On the other hand, alarming anecdotes are emerging. Mark Schoofs, now a reporter for the Village Voice and perhaps a little too influenced by Gabriel Rotello, the Carrie Nation of AIDS prevention, told me he knows a couple who are both HIV+ and do not use condoms within their relationship. One partner now has virus that is resistant to d4T. But he's not taking d4T, his lover is. We need some research about these possibilities: do PIs work for everyone? How long do they work-how much time do they give us? Is it possible that a few years of treatment can result in genuine remission and permit us to go off the drugs? Do the drugs have long-term effects that haven't even appeared yet, since the longest anyone has been on the PIs is 24 months? So much for the speculation. What we know for certain is that even if these miracle drugs actually work, the overwhelming majority of people with AIDS will never be able to afford them. Nine out of every ten cases of AIDS are in the developing countries of Africa, Asia, Latin America or the urban poor of the post-industrial European/American nations. Many of these countries, racked by war, poverty and other threats to life, cannot afford even aspirin, let alone protease inhibitors. Right now, PIs are priced at US $10,000 for a year's course of treatment. The US Congress voted $35 million to the Ryan White CARE Act to pay for these treatments. That amount will not be sufficient for all who need the drugs. On the other hand, gossip in LA says that private medical offices are losing profits because PWAs using the new drugs are having fewer illnesses and fewer doctor visits. Let's hope that this trend means we will be healthier and that the savings to CARE or MediCal or private insurance will be shifted to the expensive new medicines.

More than this, let's fight the pharmaceutical companies. It's not just greed. We live in a capitalist country where the main motive for drug development, like everything else, is profit. The drug industry functions the same whether the heads of Glaxo or Merck or Abbot are altruistic or personally greedy. The iron law of industrial capitalism is that a company must increase its profit margin or it just gets outdistanced by the competition. There were big debates about how quickly to license the new PIs, since slower trials might have answered more of the big questions that remain. The FDA and others were persuaded that it was more humane to make the PIs available sooner, and the drug companies therefore claim they have to recoup development costs and maintain costly post-licensing trials to guarantee the efficacy and safety of their products. That's the way capitalism works, and we can't realistically expect marketplace charity from a company that would be forced out of business if its margins of profit (not just earnings) were not increasing to cover the expansion necessary to supply the demand.

But who's realistic? It's immoral to price these drugs so that only the insured can take advantage of their life-giving benefit. We finally have some medicines that seem-all things considered-to be worth fighting for. Concerted action could force down the prices across the board. International drug companies could be made to see that selling the drugs to everyone at a smaller markup is better than selling to a very restricted market at higher markups. There was once an AIDS movement that had enough unity and power, and a drug company with a realistic view of its relation to the market, to force down the price of AZT. We could build a movement again. (Ferd Eggan is the Los Angeles City AIDS Coordinator and a former Executive Director of Being Alive.)


Information in this article was accurate in August 5, 1996. The state of the art may have changed since the publication date. This material is designed to support, not replace, the relationship that exists between you and your doctor. Always discuss treatment options with a doctor who specializes in treating HIV.