How Some Live with AIDS with Little or No Therapy

As Asia confronts a new and fast-growing AIDS epidemic, scientists and researchers from all over the world at the 6th International Congress on AIDS in Asia and the Pacific heard from many brave individuals who are pushing their governments to respond to a wealth of needs.

They play much the same role that ACT UP did in the United States 20 years ago, but their quest requires more courage. They are admitting to a disease associated with sex and drugs in socially conservative societies. They demand treatments in countries low on resources, and they demand an end to discrimination.

Many, like Celina D'Costa, reminded the audience that they have received no treatment after years of infection with HIV, even though their homelands, like India, now produce the medicine that have vastly prolonged the lives of Western AIDS patients.

"The therapy is not available to most of us," said D'Costa, a gentle woman in a traditional sari, who is vice president of an organization for Indians infected with HIV. "The medicines are very expensive and the testing that goes along with it costs five or six months of my salary. Most of us have never even seen these pills. We should be receiving treatment and services, of course, but our voice isn't really heard."

"We're still at the beginning stage," said Suzanna Murni, who started the Spiritia Foundation in Indonesia four years ago to promote the interests of people with HIV, like herself. "There are more positive people who are open and speaking out in front of officials and doctors. It changes attitudes toward positive people."

A recent report by a panel affiliated with UNAIDS said that Asian countries are facing serious health crises from AIDS and are often poorly prepared to respond. Several countries, including China, Indonesia and Vietnam, are experiencing explosive epidemics.

Murni has promoted her patient-centered message at conferences, at the UN and at Indonesian meetings. Her themes include training doctors about HIV and stopping discrimination and bias against those with the virus.

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