China’s youngest AIDS victims kept in the dark

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.

“China has made great progress in the fight against AIDS, but far too many children are getting the wrong AIDS treatment,” said Sara Davis, executive director of Asia Catalyst. “Indeed, thousands may not be getting any treatment at all.”

The report, which uses conservative estimates that 9,000 to 10,000 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. Personal interviews in Gejiu bear out the report’s findings: China’s healthcare system appears to be failing the smallest victims of its AIDS epidemic. 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.

So great is the stigma here that parents who have the virus simply don’t discuss it. 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. Often, they simply don’t test their children for the virus, preferring not to know.

“If your child tested positive, you would tell everyone the opposite — that they were (HIV) negative,” said one woman, a former intravenous drug user, who insisted her own child does not have the virus, though both his parents do.

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. There is just one clinic in town that dispenses AIDS drugs, and the risk is too great that their daughter would figure out why they were going to that clinic, they said. The stigma is so overwhelming they would rather keep their illness hidden than take free medication that could extend their lives by years.

After hearing some of the horror stories of Gejiu, it’s not hard to understand why parents feel so compelled to protect their children from potential social shame. Xin Deming points to the case of a family who spoke about their child’s HIV-positive status to a local newspaper. Shortly after, the child, subjected to taunts and cruelty, was forced out of his elementary school.

Though Xin hopes the city will become more educated and change, all he can do now is try to protect his niece.

“I want to tell her about AIDS first, in order to give her a transition period,” said Xin. “After she grows up, I will gradually tell her everything.”

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