Despite central directives to discourage discrimination against the tens of millions of people infected with Hepatitis B, old habits die hard in Xinjiang where parents are taking legal action against education authorities for barring their children from a coveted educational opportunity, and where a local NGO that broke the news to media has met with a stern response. Chang Tianle (常天乐) reports.

Life has never been so dramatic as in the past two months for 12-year-old Uygur girl, Mainisa (麦妮萨), who had left her hometown for the first time in September. She travelled 1,600 kilometres from Kashgar, in western Xinjiang Uygur Autonomous Region, to its capital Urumqi. There, she studied in a boarding school, with the Regional government covering all the costs.

It was a hard-earned place, open only to top students in rural primary schools, in a program designed to provide free and better education for children, mostly ethnic minorities, from distant villages in the Region. It is seen as a stepping-stone to higher education and, eventually, a brighter future.

The classes are delivered in Uygur and Mandarin. “The school was hard, but fascinating,” said the wide-eyed girl.

But in late September, before she fully adapted to the new environment, Mainisa tested positive for Hepatitis B and was ordered to leave the school. She stayed on, saying her family was too poor to pick her up, until October 13, when her primary school headmaster appeared and took her away.

A week later, she was in Beijing telling her story to a Phoenix TV journalist and millions of viewers behind the camera.

Mainisa is one of 19 Hepatitis B-infected students dismissed by the Urumqi schools in September—and one of an estimated 120 million Chinese Hepatitis B carriers, all of whom are vulnerable to discrimination.

With nearly 10% of the population Hepatitis B positive, the Chinese government has recognised the issue and is making great efforts to prevent the disease, according to Stephen Hadler, an expert from WHO’s China office.

Since 2002, all newborn infants have been vaccinated against Hepatitis B and some provinces are also promoting vaccination of older children.

However, besides medical measures, there is another side of the story: people’s mindset.

“There is a history of discrimination (against Hepatitis B carriers) in China,” says Hadler.

For years, many institutions, including government agencies, excluded carriers from employment and even higher education. In recent years, disputes between people infected with Hepatitis B and employers and schools have attracted media and public attention.

Hadler notes that some government agencies and NGOs have worked to decrease discrimination, but that “the uniform enforcement of the laws is always a challenge.”

In September, the Ministry of Health issued guidelines highlighting the three pathways of hepatitis B transmission: blood, unprotected sex and mother-to-child at birth. “Normal daily life and work contact will not spread the virus,” it says. “Hepatitis B carriers do not pose a threat to surrounding people and environment. They can study, work and live normally.”

At a press conference to dismiss “rumours and untruthful media reports,” a Xinjiang education official stressed that of 47 students who tested positive for Hepatitis B, only 19 were discharged because they were active cases and so considered “more infectious.”

However, Hadler points out that there is only high risk of transmission if sexual contact or blood transfer occur. “It does not make sense to exclude any persons who are HBV carriers from boarding schools because risk of transmission is so low.”

“Many people in China need to be better educated about hepatitis B,” he adds.

Apparently, experts and central government’s voice is not heard in Xinjiang.

The 19 dismissed students were issued a certificate saying that they had infectious disease and should go back to their hometown to study.

Many parents are reluctant to take their children back as the education in remote towns is far below standard. They also worry that no school would accept their children.

A mother had vainly petitioned various government departments in Xinjiang before she found lawyer Zhang Xinyuan (张欣元), who represented a Hepatitis B victim expelled from a Xinjiang university last year. But the case was dropped before going to the court as the university agreed to take the student back.

Six other students and their families joined the mother and jointly hired Zhang to represent them to sue the Xinjiang education authorities.

“There is no ban on Hepatitis B carriers in school, whether at national or local level. This is pure discrimination,” Zhang told China Development Brief in a telephone interview. “If the government does not intervene, we will certainly win the case.”

But Xinjang authorities have not let the matter rest with the courts. Some of the parents have been interrogated by the police and ordered not to talk to journalists, according to Zhang. The father of one of the children was even instructed by his work unit to drop the case.

The situation is even worse for Snow Lotus (雪莲花) a Xinjiang NGO mainly devoted to HIV/AIDS education, which first broke the news to the media. On October 4, four of its volunteers were detained by police when they were distributing Hepatitis B information flyers in front of one of the middle schools that rejected the students. They were released five hours later.

On October 18, the police shut down Snow Lotus’ office and ordered this unregistered NGO to stop any kinds of work. Its leader, Chang Kun (常坤), was terrified by the legal action and got “extremely emotional” when police came to his office and seized his personal computer and files, according to a letter he sent to a mail group. In tears, he attempted to leap from a window, he reports, but was stopped by a teacher.

Two hours later, this senior university student fled to Beijing to seek protection.

Sitting in a Kentucky Fried Chicken restaurant in Beijing, Chang denounced the ban on Snow Lotus as retaliation: “The Xinjiang education authority is offended by the fact that a student should rise up and give them trouble.” He said he was afraid to return to Xinjiang unless the authorities ensure his safety.

Lawyer Zhang Yuanxin says he does not feel threatened and has not been harassed. He has discussed the case with judicial officials and fellow lawyers and says that “They are very supportive.”

Now, 17 of the 19 expelled students are back to school in their own hometown. Ironically, some still go to boarding schools. Mainisa and another girl are staying in Urumqi to wait for the court hearing on November 9.

“Going back and forth from Urumqi and Kashgar is too expensive for them,” explains Zhang.

Mainisa’s father says his main concern is not to win the lawsuit or support from NGOs. He does not want media exposure either. “I just want my daughter to go back to that Urumqi school and have her disease treated,” said the Uygur farmer.

October 27, 2006