China’s hepatitis victims claim discrimination

Until a few weeks ago, it seemed there was no stopping Mahsum, a wide-eyed 12-year-old from a dusty cotton-farming township in China’s Xinjiang region.

After months of rising early for an extra two hours of study before class, Mahsum, a member of the Uighur ethnic minority, won a coveted subsidised boarding place at a much better school in the regional capital of Urumqi.

But just as he settled into life at Urumqi No 15 Middle School, Mahsum’s hopes were shattered. Physical examinations found that he and 18 other pupils were infected with hepatitis B, and the principal immediately expelled them.

“I was so pleased when I got into the school that I wanted to study even harder,” Mahsum says, weeping quietly throughout an interview in his home village. “After the health test I just felt crushed.”

But the expulsion of the 19 children was not just a blow for them and their families. Health campaigners and lawyers say it was also the latest in a long series of acts of discrimination against the estimated 120m Chinese infected with hepatitis B.

Unlike the less serious but more infectious hepatitis A virus, hepatitis B is mainly transmitted through sex, contaminated needles or at birth, and carriers pose little risk to co-workers or fellow students. But Lu Jun, organiser of a popular website for hepatitis B carriers, says prejudice against them among schools and employers has grown in recent years and is now endemic in China.

The example set by a raft of regulations banning carriers of the virus from the food industry or municipal waterworks, for instance, has fuelled confusion about how it is transmitted, he says.

At the same time, an explosion of advertising by vendors of hepatitis treatments has stoked popular fears about the disease, which leaves most carriers unharmed but can cause serious liver damage and death. “They use ‘terror advertising’ in order to sell their medicines,” says Mr Lu, who is himself a carrier.

Officially, Beijing opposes all discrimination against hepatitis B victims, a stance backed by a sweeping but vaguely worded 2004 law. Last month the health ministry issued guidelines saying carriers could live, work and study “normally”.

Indeed, the official China Daily newspaper quoted a health ministry spokesman as denouncing the move by the No 15 school as “prejudice” and insisting the 19 pupils had a right to study.

But the ministry has since backtracked, saying the spokesman was “misunderstood” and that it cannot comment on the policies of education departments.

Meanwhile, authorities in Xinjiang are standing firm, saying the dismissals were legal and blaming opposition on “inaccurate reporting” by domestic media. Some parents have been ordered to cease contact with journalists, according to people familiar with the situation.

In an apparent act of retaliation, Xinjiang last week banned Snow Lotus, the local student-led Aids education volunteer group that publicised the expulsions.

The dispute has already added new fuel to an issue that won national attention in 2003, when university graduate Zhou Yichao stabbed to death an official who rejected his application for a government job on the grounds that he was a hepatitis B carrier.

Though Zhou was executed, his plight won widespread sympathy. More level-headed victims of discrimination have also brought lawsuits challenging rejections from universities and employers.

Some progress is being made in preventing and treating hepatitis B – which some experts say kills about 300,000 Chinese a year – and the cause has a high-profile “ambassador” in Andy Lau, the Hong Kong pop singer, actor and virus carrier.

In spite of Mr Lau’s expressions of concern, however, things look bad for the expelled pupils. Precedent suggests the attempt by some parents to sue Xinjiang education authorities is unlikely to succeed.

A devastated Mahsum is back home in far-western Xinjiang, where educational standards are low and few local teachers speak more than a few words of Mandarin Chinese.

His father, a farmer, says Mahsum no longer seems to want to study and he fears the boy will also end up tilling the soil.

But hope remains. Asked what he would like to do when he grows up, Mahsum raises his head briefly.

“I want to be a scientist or a doctor,” he says. “If I was a doctor, I could heal sick people. Maybe I could even find a cure for this disease.”

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