That was eight years ago. When D’Costa’s husband started showing signs of AIDS, she quit her job as a clerk to nurse him full-time. He died two years later-and his family promptly threw her out of their home in India. She found a room in a hostel, but was forced to leave there as well when the other residents refused to share a room with her or let her use the toilet. “I started thinking that what happened to me shouldn’t happen to others,” D’Costa, 31, told NEWSWEEK. “And I had to raise my voice.”
D’Costa, a gentle woman dressed in a traditional red sari, is one of about 1,000 HIV-positive delegates attending this week’s International Congress on AIDS in Barcelona. They are the human faces of the suffering inflicted by an epidemic that has already infected some 40 million people.
The numbers being discussed at the conference are equally alarming. One United Nations report predicts that the illness could kill 68 million people worldwide during the next 20 years if prevention and treatment programs are not “drastically expanded.” Another U.N. report, released yesterday, predicts that the number of AIDS orphans will rise from 13.4 million to 25 million in the next eight years. And numerous scientific papers presented at the conference underscored just how difficult it remains to treat the disease.
Against this backdrop those like D’Costa, now an activist for the Indian Network of People Living with HIV/AIDS, are fighting the odds. They’re telling their stories at workshops and pressing for low-cost medicines and better treatment-even though they expect their efforts to have little impact on their own difficult lives. “We come to these conferences with a lot of hopes, but we end up being depressed as we know that when we return home we will be facing the same story,” says D’Costa.
She told NEWSWEEK she has received virtually no treatment during her eight years of HIV infection-even though drug companies in India now produce cheaper generic versions of the medicines that have vastly prolonged the lives of Western AIDS patients. “We should be receiving treatment and services,” said Ms. D’Costa. “The medicines are still very expensive and the testing that goes along with it costs five or six months of my salary.”
Experience around the world has shown that AIDS sufferers can make a valuable contribution to the development of prevention and education programs. After all, who better to offer advice than those for whom such programs have been demonstrably unsuccessful? Their very presence, too, can be an object lesson. For Western audiences familiar with advances in AIDS drugs, delegates from poorer countries offer valuable insights into the lives of those who cannot afford the health care to manage their infections.
The HIV-positive delegates gather useful information at these gatherings, as well. “[The conference] helps us to gain confidence and skills that later we will take back home to continue with our prevention, care and treatment programs,” says Ron MacInnis, a 36-year-old HIV/AIDS policy advisor for the U.S. Agency for International Development.
MacInnis learned he was HIV-positive as a 26-year-old working in a volunteer program in the African country of Mali. Since then he has promoted his prevention-centered message at international conferences from Switzerland to South Africa. He believes that experts are currently more concerned with preventing the spread of the fast-moving virus than caring for those who have it. “People at Barcelona are seeking out what is working and what has proven to be effective,” says MacInnis.
Among their interests: lessons on starting a care center in poor areas, programs that reduce mother-to-child transmissions through antiretroviral therapy and efforts to set up a global trust fund to fight the disease. The funding issue made the headlines during the conference after angry protesters shouted down U.S. Health and Human Services Secretary Tommy Thompson as he attempted to speak about America’s global AIDS programs on Tuesday.
MacInnis says he understands why the activists yelled and screamed at Thompson. “Day by day, you work in a clinic or you see vulnerable people, young women, immigrants, people dying because they have no medicines. “[Then] you come to this conference and the only thing you want to do is to protest loudly. It’s a wonderful therapy,” he says.
While he is pleased that governments and human-rights groups are tackling AIDS, he feels that more needs to be done for the people who already carry the illness. “We know statistics, studies and reports about AIDS, but we urgently need money to put them into action,” he says. “There is, in general, a total lack of understanding of AIDS, until you go to Africa and see how awful the situation is there. It makes you wonder why are [governments] not giving any attention to AIDS. Where is the compassion for the other?”
For those like MacInnis and D’Costa, each conference brings its share of sadness, too. Many of their HIV-infected colleagues who planned to be in Barcelona for this week’s event have died since the meeting in Durban, South Africa, two years ago. “It’s very sad to learn that people you have known at different AIDS meetings have passed away,” says MacInnis. Among them was Suzana Murni, an Indonesian activist who died just last week. Many of those who packed the special People With AIDS (PWA) lounge inside the conference complex here embraced and cried when they heard the news.
Murni’s death made D’Costa recall some of her own experiences. “When I was infected I became obsessed with the time that lay ahead. Six months, one year.” She didn’t, she says, expect to be alive today, eight years later. Now she’s clinging to as much independence as she can muster, living a life of serenity and finding faith. “I never think about death. I always think about life.” That’s her secret, she says-and her message of hope.
