Yet despite his best efforts, she is at the mercy of erratic treatment, massive social stigma and overwhelming uncertainty about the future. Xin, 41, is off drugs and now works for a local non-governmental organization devoted to AIDS education. He is strong and outspoken, but at the mercy of a health care system plagued with problems. His niece, the orphaned daughter of his elder brother, must be protected, he insists, even if it means keeping her in the dark about her own health.
She attends school in a rural area where the city health committee, prone to gossip and leaks of private information, is not privy to her health records. Though her medication is free by government mandate, the family must pay cash for any other, related illnesses she develops.
Hers is not an isolated case. In a report released Monday , the U. The report, which uses conservative estimates that 9, to 10, Chinese children are infected with the virus that causes AIDS, chronicles a pattern of stigma, subpar health care and other barriers to medication and support for children.
While the fractured system is partly to blame, stigma and misunderstandings about HIV and AIDS permeate places like Gejiu and magnify problems to unthinkable levels. Adults are routinely fired from jobs when word spreads about their HIV status, and then they must depend on family members for everything. HIV-positive parents are nearly impossible to find and only speak under cover of anonymity.
If their children test positive for the virus that causes AIDS, they tell no one, or they tell lies. One couple I met had not yet become weak enough to require the life-saving anti-retroviral medication the Chinese government distributes free of charge. When that day comes, they said, they will refuse treatment rather than take the chance of letting their daughter know they have AIDS.
