11th International Conference on AIDS: Activist Perspective

As the lights of the massive basketball arena dimmed, the crowd grew hushed with anticipation. All alone in the darkness, Dorrie Millman, a middle-aged, white woman in an elegant white pantsuit, crossed to center stage, stood in a single spotlight and said: "I'm here to officially open the Eleventh International Conference on AIDS. I know you're probably wondering why I was chosen to open this international conference. Well, I have AIDS." We listened intently, still, wary. Her small figure was all alone in a sea of darkness, with her face magnified on two huge video screens on either side of the massive stage. "People always ask me how I, a grandmother from North Vancouver, British Columbia, could have gotten AIDS." The entire auditorium, 15,000 of us, held our breath and braced for her next words. "I tell them it really doesn't matter." The crowd went wild.

Vancouver welcomed attendees with an open heart. A huge number of beaming volunteers of all ages, ethnic backgrounds and sizes, seemed to be eagerly awaiting a question or request for directions. Most people donated their vacations to help with the conference.

I was staying in a University of British Columbia dormitory. For three days preceding the conference, a "Community Forum" was held in the same dorm. It was a giant networking/skills building mini-conference for over a thousand people with AIDS ("PWAs") from around the world. It offered opportunities to exchange ideas and to draft recommendations on various topics, including access to healthcare, human rights, funding, research, treatment activism and more. The dorm bubbled with intense conversations, disputes and shared humor -- living there was like being in the midst of a huge, HIV-positive United Nations.

Basic Logistics

Every morning began with a plenary session in GM Place, a giant basketball arena, and included at least four presentations by researchers, each of which was fascinating, and a debate on a topic of interest. One morning the debate was whether drug legalization would limit or increase HIV's spread; another topic discussed was whether money should be spent on extensive HIV testing in developing countries.

The plenary sessions ended about 11:00, and most people headed next door to another, much larger, basketball arena called BC Place. In the center of the arena floor were the commercial booths of drug companies, testing companies, international AIDS organizations (Centers for Disease Control, United Nations, USAID), book publishers, condom vendors and so forth. Most pharmaceutical booths were the size of small houses. One had a second floor coffee bar, and two had small theaters. The Durex condom booth ("Official Condom") had two guys dressed in six-foot condom suits, and a slot machine you could play, with American quarters, to try to line up three of the same type of condoms (all funds went to Canadian AIDS organizations). All booths had a wide variety of pens, markers, bags and stickers to give away. One of my friends called this "Pharmacyland."

We had great fun at the Abbott booth, where they had a tasting bar for flavored Advera. We pretended we were wine tasters and tried to identify the various flavors, with comments such as, "I like the texture, it's sort of like chocolate syrup laced with hair oil." The staff informed us it was the de-natured sardine oil, and they offered free recipe books. Along the edges of the arena were booths from community-based organizations, including several from religious AIDS organizations, a large number of international HIV organizations (Swaziland AIDS Support Organization, Pink Triangle/Malaysia, Israel AIDS Task Force), three ACT UP booths, and my favorite, the sex workers.

The Network of International Sex Workers

This booth was staffed by commercial sex workers, both men and women, most of them from Vancouver. They talked about what was legal and illegal regarding public sex, explained the mission of the Network of International Sex Workers, had great stickers ("Support Your Local Sex Worker" and "Your Pleasure Is My Business"), and even had a great list of places to eat cheaply in Vancouver. They also attended research presentations about sex workers. They heard, for example, that the Burmese Health Minister had been invited to present research regarding HIV prevention, and they were "pissed." Several years ago, the Burmese government told twenty sex workers with AIDS that small pills were the cure, then gave them fatal doses of cyanide. All of them died. The Burmese Health Minister was the man who had authorized the cyanide. They decided to attend his presentation and alerted the International Caucus of Women and the Global Network of People with AIDS to come along as well. When the Health Minister heard they were coming, he didn't show up.

Wake Up Canada!
We Need A Strategy, Not A Tragedy

The Canadians are facing a crisis in their AIDS funding. All money for care, prevention and research is to end in 18 months, and currently, their government is not talking about what will happen when the funds run out. Canadian PWAs, researchers, doctors and social workers formed a broad-based coalition (named "Wake Up Canada!") to pressure the government to action. Just before the conference, the prime minister Jean Chretien announced he had an important fishing vacation that would prevent him from opening the International Conference. The Canadians were seething. Feeling that the government turned its back on them, they asked all of us conference attendees to stand up and turn our backs when David Dingwall, the Canadian Health Minister spoke during the opening ceremony. "Canada has turned it's back on us, now we'll turn our back on Canada" read the flyers.

Tension grew as the opening ceremony proceeded. Scheduled to speak last, Mr. Dingwall was a nervous wreck. PWAs packed the first twenty rows in front of the stage. As Mr. Dingwall was introduced, they rose, stood on their chairs, turned their backs on him, and started to boo. At the same time, over half the audience silently stood up and also turned their backs. This pressure caused the Canadian government to announce that discussions regarding funding renewal would start in September. It also prompted Mr. Dingwall to schedule meetings with Wake Up Canada! and several PWA advocacy groups that week.

Later that week, Mr. Dingwall got the flu and left early. During the closing ceremony, a PWA in a wheelchair, representing Wake Up Canada!, presented a representative of the Conference with a huge bouquet of flowers for the Health Minister from Canadian PWAs because "we know how it feels to be under the weather and hope he feels better soon." They also gave a large bottle of sunscreen to the Prime Minister, since "we suspect he is suffering from sunstroke."

The Cure?

As the conference began, one of the big issues was: had the cure been found, and if so, what were the implications? While it seemed that the media really wanted to have big "CURE" headlines, most people with HIV, doctors and activists had a "wait-and-see" attitude. Many feel cautiously optimistic about the protease inhibitors; they want to know how long the drugs will be effective, and they realize some people won't be able to take them at all.

The Downside Of Too Much Optimism

There was concern about the consequences of hope taken out of context. Would governments cut back on prevention funding and plan to give drugs to HIV-infected people in the future? Would individuals ignore safer sex, figuring they could just take "the cure?" These were some of the topics discussed in conference hallways.

Access To Drugs

Costing an average of $10,000, protease inhibitors are out of reach of most people with HIV, in developed countries (like the U.S.), without health insurance or Medicaid. For the developing countries of Africa, Asia, South and Central America it is much worse. In many countries, people with HIV can't get drugs other than aspirin. There is no Bactrim to prevent Pneumocystis Carinii Pneumonia (PCP), no treatment for anything else, and getting Cytomegalo Virus (CMV) simply means blindness.

It was very unsettling to listen to researchers talking about exciting new drugs, and to realize the person sitting next to you would never get them. For years, people with HIV have been trying to get researchers to study holistic medicine, since it is the only option for many people with HIV in the poorer countries of the world (and the preference of lots of others). For the first time, researchers started talking about studying holistic medicine: "After all, they'll never afford protease inhibitors in some countries, so maybe we should look at what they are already taking that seems to be working." During the closing ceremony, the main organizer for next year's conference suggested that drugs that are no longer useful for people in developed countries should be given to the developing countries. The PWA speaking after him, who came from Indonesia, immediately told him that she was offended that he would even suggest such a thing.

Throughout the conference, feelings about drug pricing ran high, evoking numerous protests. ACT UP's Eric Sawyer called on governments and pharmaceutical companies to work together to make these drugs available to people unable to buy them. The Brazilian delegation lead a protest past the commercial exhibits (most of which were pharmaceutical companies), chanting "Lower the price." Throughout the conference, ACT UP awarded "Golden Urns" to "those organizations, researchers, governments or pharmaceutical companies that have done the most to kill people with AIDS." For those pharmaceutical companies who earned a Golden Urn because of the price of their drugs, hundreds of stickers were plastered on their booths that read "AIDS Profiteer" and "Greed = Death." Serrano was awarded a Golden Urn for the price of Human Growth Hormone and Abbott got one for the price of Norvir, their protease inhibitor.

Other Golden Urn Awardees

The American Medical Association got a Golden Urn for endorsing mandatory testing of pregnant women, and Hoffman LaRoche got one for their refusal to run pediatric clinical trials of either protease inhibitors or oral gancyclovir.

Addressing Access to Drugs

Jairo Pedraza, the North American representative for the Global Network of People Living with AIDS, ("GNP+") organized a panel discussion on giving the developing world access to these drugs. His panel included: Patsy Fleming, US AIDS Czar; Gordon Nary, head of the International Association of Physicians in AIDS Care; Dorothy Burke from the World Health Organization; Major Rubaramira Ruranga (Ugandan representative to GNP+); and Suzana Murni Spiritia (Indonesian representative to GNP+).

Gordon Nary began a dialogue about increasing drug access to get something done. He announced that his organization would fund a full-time staff member just to work on drug-access in developing countries, then he turned to Patricia Fleming and said, "Patsy, not to put you on the spot, and remembering that we are being recorded, I'd like to call for Vice President Gore to convene a meeting of the pharmaceutical companies to discuss drug donations and action steps." Shortly thereafter, Peter Young, representing Glaze-Wellcome (one of only three drug companies that chose to send representatives), said the White House could "save the stamp," that Glaze was willing to work with the Vice President to find some solutions to get drugs into Asia, Africa and South America.

The Next Conference

The next International Conference on AIDS will be in Geneva, Switzerland in 1998, and rumors are already swirling. Usually, the International AIDS Society (IAS) licenses a group to stage the conference, but since it will be in their home city, the IAS will stage it directly. One of the things that makes the International Conference on AIDS unique is that people with AIDS attend and are involved in planning each conference. The IAS is also concerned with how "touchy-feely" the conference has gotten, and would like to limit presentations to only medical science, eliminating presentations regarding prevention, education, outreach, and most social sciences. Pressure is also building to have the following conference (2000) in Africa, though some people feel there are few cities in Africa which have the capacity to house 20,000 people.

Body Positive will be attending the Twelfth International Conference in Geneva. Start saving now, we hope to see you there!

Glossary

Developed world: Industrialized countries, like the U.S. and western Europe.

Developing world: Agricultural countries, like those found in Africa, Asia, South and Central America.

Karin Timour is a consultant and the former director of education at Body Positive, Inc.