"Wo deng si." Our researchers heard it over and over again as they interviewed people with HIV/AIDS in China: "I'm waiting to die."
In China, hospitals routinely turn AIDS patients away, because health workers are afraid of contracting AIDS themselves, and because they're afraid of scaring away paying customers. So at least a million and probably many more in China are waiting to die without any medical care at all.
Officially, China's national AIDS policy discourages discrimination against people living with HIV/AIDS. But in fact, these people are frequently hounded out of their homes, fired from their jobs, and refused medical care on the basis of their status, with no way to seek redress. Chinese hospitals routinely test patients for HIV/AIDS without even telling them. One health worker admitted to Human Rights Watch that the hospital calls up employers or families to warn them that a person they know is HIV positive.
Hospital AIDS wards could hardly be less hospitable. At one Yunnan hospital in an area with high HIV prevalence, Human Rights Watch researchers found that the AIDS ward was actually closed, with a bicycle chain and padlock over the door handles.
Ji, a 19-year-old we interviewed in the Yunnan capital of Kunming, said he entered a local hospital a year ago with a number of health problems, not knowing he was HIV-positive. Told he needed an operation, Ji was lying on a cot late at night when his surgeon abruptly told him, without explanation, "We can't treat you here." Ji later went to a local health center and discovered the truth about his condition. Now Ji and others who are HIV-positive live virtually underground, with no access to health care or support services.
They hide their symptoms from their families. Some wear scarves and hats to hide from neighbors, and move around from one neighborhood to the next, fleeing when neighbors or landlords find out they are HIV-positive. Then they hole up on cots in back-alley tenements -- with no one to bring them food, change their sheets, or even offer basic human empathy -- and wait for the end.
Beijing has an official policy of trying to discourage the spread of AIDS. But discrimination in the health-care system is producing the opposite result: People with HIV/AIDS often live on the margins, beyond the reach of counselors and other professionals who can help stop the spread of the disease. There are no national laws against discrimination on the basis of HIV status, and no legal recourse for people with HIV/AIDS in China.
Beijing has recently issued some positive policy statements about HIV/AIDS. It has even asserted the importance of non-discrimination in national action plans, though such plans do not have the force of law. Lawmakers in Suzhou city have passed regulations to protect the rights of people with HIV/AIDS.
Yunnan, close to the heroin-producing Golden Triangle, reported the country's first cases of HIV among drug users in 1989. The epidemic quickly spread north along the drug trafficking route. Since then, while officials in some other Chinese provinces have actively covered up the AIDS epidemic -- particularly the blood scandal that has led to the infection of Chinese residents in seven central provinces -- Yunnan's more tolerant government has encouraged international aid organizations to launch innovative AIDS prevention projects.
But people living with HIV/AIDS live so far at the margins of society that some of these projects never reach them. Unless the central government addresses the problem of discrimination -- a fundamental violation of human rights -- well-meaning AIDS projects aren't going to hit their mark.
The SARS epidemic showed the importance of national leadership and a strong public health system in fighting these kinds of diseases. It is time for Beijing to show the same resolve in helping people with HIV/AIDS. The new political leadership in Beijing should create laws protecting the rights of people with HIV/AIDS, and establish government agencies that can investigate and resolve complaints of discrimination. It should also authorize major increases in AIDS education, prevention and treatment projects. If Beijing wants to find a Chinese model, it could also look to successful laws and practices in Hong Kong.
One of the world's most severe HIV/AIDS epidemics has hit China. To simply "wait for death" is not an option.
Brad Adams is Executive Director of Human Rights Watch's Asia Division.
