Being Alive; August 1996
Christopher Griffin

-David W. Dunlap in The New York Times

No doubt about it, it was exciting to be in Vancouver for the International AIDS Conference, at this particular moment in history, when, for the first time in the fifteen-year fight against AIDS, medical science seems at last to be holding out real promise for people living with the virus. As the Conference began, protease inhibitors were still pretty new to our arsenal of drugs. Clinical reports of how terrifically powerful they were proving to be still had the freshness of discovery; people with AIDS (myself included) were reporting astonishing improvements in their health, T-cells, viral load, vitality and overall well-being. And the press was full of stories carrying the heretofore unheard of words "cure" and "eradication of the virus." And while nearly everyone understood that the battle was hardly won, that the media hype would translate into neither an immediate cure nor an immediate eradication of HIV, even cautionary skeptics had to admit that a corner had been turned.

As the Conference delegates gathered, the collective optimistic buzz seemed palpable. For someone like me, who has been waging a personal fight against the ravages of AIDS for the past two years, whose primary focus has been on my own and my friends' personal survival, it was thrilling, and deeply moving, to experience what seemed to be real, honest-to-god hope in a milieu that just a short time ago seemed nothing but a barren landscape.

It was therefore extremely sobering-staggeringly so-to enter the Conference auditorium that first day. The optimistic buzz had only seemed collective; it was in fact extremely limited. I was forcefully reminded by the presence of hundreds of delegates from the developing countries that, despite the exciting medical and pharmaceutical advances that promise to help in my own personal battle for survival, the global reality of the HIV epidemic is of a far different nature.

In mid-July 1996, an estimated 21.8 million adults and children worldwide were living with HIV/AIDS, of whom 20.4 million (94%) were in the developing world. Close to 19 million adults and children (86% of the world total) were living with HIV/AIDS in sub-Saharan Africa, and in South and Southeast Asia. Of the adults, 12.2 million (58%) were male and 8.8 million (42%) were female.-from the Final Report of "The Status and Trends of the Global HIV/AIDS Pandemic," a satellite symposium.

Yes, there would be, as expected, much talk of viral loads and cytokines and chemokines and inhibitors of all types and potencies in the days ahead. But what really caught my attention that first day was the narrowness of my own experience, how unintentionally but chillingly parochial my perspective on the AIDS crisis was. My perspective was of someone who had of course acknowledged a world-wide HIV epidemic and intellectually understood the idea that millions elsewhere were struggling with this disease, but who knew of this almost exclusively from the limited coverage in press or television and who only theoretically grasped the magnitude of the global problem. I prided myself on being medically up-to-date, even cutting-edge. And yet I discovered, to my surprise and chagrin, that while I knew so much about my own illness, I knew next to nothing of the way ninety percent of the world's HIV-infected people experience this disease.

The new drugs were looked at as irrelevant by many of the Third World delegates who will never be able to afford them. Dr. Angelo D'Agostino, who runs a home for infected children in Kenya, said the conference was often too high-tech for his needs. "As far as any help from these multi-billion-dollar drug companies, we don't have any drugs in my country, and they aren't giving us any."-The Vancouver Sun.

In one of the afternoon sessions a man from Kenya was asked how he felt about the protease inhibitors. He matter-of-factly replied that he didn't really have any feelings about them at all. He knew that if he wanted to he could obtain these drugs for himself, through his American contacts; he might even be able to take supplies back home to his friends. But he doubted his friends would take them. And he said he really wasn't interested either.

The reality of AIDS in his country had nothing to do with pharmaceuticals and everything to do with basic necessities: obtaining and maintaining decent medical care, food, housing. There were no antivirals there. People could not afford them, and government would not or could not provide them. He also suspected that compliance-the ability to take drugs at a certain time on a specific schedule with specific dietetic requirements-would be a significant problem for people in his country. His efforts were all directed at prevention of infection and basic care for those with disease. He said he believed that the only scientific breakthrough that would be of any practical use in his country would be a vaccine.

Clearly, the strongest predictor of HIV infection worldwide is poverty.-Thomas Coates, University of California Center for AIDS Prevention Studies.

At a symposium on HIV prevention held before the start of the Conference, most attendees concurred that preventive programs are being neglected in favor of research into new therapies which will be beyond the means of most of the world's people infected with or affected by HIV/AIDS. And yet prevention does work and may be the only effective means of stemming the epidemic, at least until (if ever) an effective and affordable vaccine is developed.

Prevention is more difficult than therapeutic research. It's slow, carries little hope of a Nobel prize and involves the greatest challenge of all: changing human behavior and societies.-Michael Kirby, former member of the World Health Organization's Global Commission on AIDS.

Speaker after speaker from over a dozen countries testified to the effectiveness of their prevention programs; reports were given of preventive efforts from Mexico to Myanmar, from Uganda to the US. Following government intervention in Thailand, condom use increased remarkably from 14% to 90% among commercial sex workers and their clients. Specific preventive efforts among Thai soldiers have brought a dramatic decrease in new HIV infections. Ugandan studies show a 35% reduction in new infections among women aged 15-24, with the most significant reduction occurring among women under 20. These reductions are attributed to changing sexual behavior among younger Ugandan women resulting from HIV education efforts: a delay of first sexual activity, faithfulness to one partner and increased condom use.

In Malawi, where 30% of women are HIV+ by the time they give birth, studies linking high viral load to the presence of other sexually-transmitted diseases suggest that treatment of other STDs may significantly reduce new infections in a population with many childbearing women. Needle exchange programs studies in Vancouver, the US, the Netherlands and other countries show that they effectively reduce HIV transmission without increasing drug use. (A San Francisco study on the consequences of the US failure to adopt a national needle-exchange policy estimated that 4,000 to 10,000 HIV infections could have been prevented had a policy been in place.)

There were plenty of reports, however, of an epidemic still wildly out of control. One study of women in India showed an "astonishingly high" prevalence of HIV among women who are not commercial sex workers and therefore considered "low risk." Only 25% of these women had any knowledge at all about HIV or AIDS, despite government education programs. The most significant conclusion of this study is that HIV is moving with great rapidity through the population at large. "The challenge now," said Margaret Brentley of Johns Hopkins University, "is to figure out how to reach this population of women who don't have access to information, who don't know what to do, and who are in a system of gender relations that is very entrenched."

Thank you for providing my accommodation while in Vancouver-which costs the equivalent of three years of rent for me. Thank you for my air ticket, the cost of which would feed my two children from now until they reach adulthood, God willing.-Katherine Nyirenda of Zambia in her Opening Plenary speech.

At a panel on politics and inequality, delegates heard that social and economic inequalities resulting from globalization of trade by transnational corporations are leading to increased vulnerability to the HIV epidemic, especially among women. "The World Bank is now a bigger influence on health policy than the World Health Organization," said Meurig Horton of Britain. "People are considered worthy of health care only if they are considered economically productive." This leads to extreme gender inequalities, increasing the likelihood that women will become infected with HIV. "Women are relegated to invisible reproductive activities which are not seen as productive in the global economy, " said Getta Rao Gupta of India.

Paul Farmer of Cambridge, Massachusetts, in reporting findings from his study of HIV in Haiti, noted a "feminization of the epidemic," and remarked that "HIV tracks along steep gradients of power. It does not track along poverty as much as inequality."

More emphasis must be placed on the development of safe and effective vaccines if we hope to halt the spread of AIDS.-Peggy Johnston of the International AIDS Vaccine Initiative.

While decidedly less sexy and attention-grabbing than new drugs or speculation about "eradication of the virus," programs which aim at the prevention of HIV infection constitute the best (or perhaps only) hope for the millions affected by HIV/AIDS in developing countries where pharmaceutical therapies may remain forever unobtainable. And yet even the most aggressive prevention programs cannot truly expect to control fully the epidemic.

It is crucial that more support, financial and otherwise, be devoted to vaccine development. The International AIDS Vaccine Initiative (IAVI) is a non-profit organization sponsored by the Rockefeller Foundation dedicated to accelerating the development of preventive HIV vaccines for world-wide use. Its mission is to work with non-profit, profit and government groups to reduce the uncertainties and risks associated with private-sector investment in HIV vaccine development. The needs of the developing world are of particular importance to IAVI. "It is extremely risky," IAVI's Peggy Johnston has said, "to develop a vaccine only against subtypes of HIV prevalent in the US and Europe and just hope that it will work in developing countries." In the coming year IAVI will be supporting one or two approaches to vaccine development that might not have been funded without the help of this foundation. More work of this kind is necessary.

Many Americans continue to believe that AIDS is mainly a disease of gay white men-despite the fact that in the 96 largest metropolitan areas in the US, half of all new HIV infections are transmitted through injecting drug use, a quarter through heterosexual intercourse (70-80% of these are in women), and only a quarter through homosexual intercourse, and the greatest increase in infections during the past decade has been in African-American and Hispanic populations.-Michael H. Merson in The Lancet There is equal concern that the new drugs will be unavailable to many people with HIV/AIDS residing in the US and the other developed countries. Access to these powerful therapies may prove to be beyond the reach of the uninsured, the poor and the marginalized. Good news arrived recently that the three currently available protease inhibitors had been added to California's AIDS Drug Assistance Program formulary. President Clinton has requested additional moneys from Congress to help finance ADAPs nationwide. But these programs are already near or at or even beyond the breaking point. "To deliver what today is regarded as the standard of care probably would bankrupt any system on the planet," said Toronto physician Eric Klein. "How can we realistically look at lifelong therapies?" This is the question all of us-people with and without HIV/AIDS, governments, the insurance industry, pharmaceutical companies-must struggle with. It is imperative that we come up with an answer.

"The official theme of the Conference was "One World-One Hope." But participants came up with their own slogans, like "Third World-No Hope" and "One World-One Hype." Addressing the opening ceremony, Eric Sawyer, a founding member or Act Up/New York, proposed "Greed=Death" as the watchword. Thomas B. Stoddard, a lawyer and advocate for people with AIDS, thought "New Hope for the Rich" would be fitting."

-The New York Times

There is, therefore, a decidedly bitter flavor to my taste of new hope and good fortune. While I am of course very happy to have lived long enough to benefit from these new antiviral combinations, my pleasure is tempered by the daunting fact that for most people infected with HIV these drugs will remain out of reach. It is crucial that those of us who stand to gain significantly from the technological advances and medical breakthroughs, which we can expect to keep coming in the months and years ahead, keep ever mindful of the true nature of this world-wide epidemic. We must work to make sure the focus of anti-HIV efforts include all peoples, in all parts of the world.

Prevention and outreach programs must be developed, funded, supported. Medical science must devote more energy to the development of safe and effective vaccines. If this virus is to be eradicated, or even just suppressed, it must be accomplished on a global basis. Anything less will continue to be a catastrophe. Widespread speculation today about a cure is a distraction.

-Dr. Kevin DeCock, London

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