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China's youngest AIDS victims kept in the dark

Even in Gejiu, which has more cases of HIV than anywhere else in China, the stigma of infection can be overwhelming.

GEJIU, China — Xin Deming's family has been decimated by AIDS and he is adamant the disease not ruin the life of his 10-year-old niece. Yet despite his best efforts, she is at the mercy of erratic treatment, massive social stigma and overwhelming uncertainty about the future.

In Xin’s family, three of four sons used heroin, turning to needles at the beginning of an AIDS epidemic that sprouted more than a decade ago near the Chinese border with Vietnam in Yunnan province. A growing drug problem and burgeoning sex-work industry on the drug trafficking route created a fertile environment for AIDS to spread in Gejiu, a tin-mining town of 300,000 people on China’s Red River. International agencies say Gejiu has more cases of AIDS and HIV infection than any other city in China.

In Xin’s family, two of three drug-addicted brothers died. 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.

“She told me she knows she’s different,” Xin said. “I asked what she meant, and she said, ‘I don’t know why, I just know I’m different from the other kids.’”

The local hospital doesn’t always have specially formulated pediatric AIDS drugs on hand, so sometimes the girl is given a different, adult formulation — whether the two formulas are compatible, nobody seems to know. 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.S. group Asia Catalyst said a number of barriers, including social stigma, lack of adequate health services and spotty international outreach likely have kept scores of HIV-positive children in China from receiving proper care.