Advocates Fight to Cure Prejudice
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There are more than 100 million of them in China -- nearly one person in 10. They are all around us: mechanics, lawyers, teachers and students.
On the streets of Beijing , it is impossible to point them out, for they laugh, cry and carry on just like the rest of us.
Yet there is something very different flowing through their veins. It is their secret and curse -- the hepatitis B virus (HBV).
According to a recent study by the Asian Liver Center at the Stanford University School of Medicine, HBV kills as many as 280,000 people every year in China -- more than tuberculosis, HIV and malaria combined.
Even as those carriers worry about the health risks of HBV, a potentially life-threatening liver infection, they must also overcome the hurdle of discrimination.
Every day, on the 21st floor of an office building near the Beijing West Railway Station, the phone of Beijing Yirenping Center's anti-discrimination hotline rings.
"Just the other day, we received a call from a nurse in Beijing who was fired after the hospital she worked for found out she had HBV," an employee of Yirenping, who identified herself as Jane, told METRO.
Founded in December 2006 by HBV carrier Lu Jun, the Yirenping Center is a nonprofit organization dedicated to promoting social justice Chinese people who suffer from communicable diseases and disabilities.
In practical terms, Yirenping attempts to meet this mission through public education initiatives and legal aid to disadvantaged groups that are often fired or refused employment because of their medical condition.
According to Yirenping's chief coordinator, Yu Fangqiang, the center has taken on about 150 legal cases in the four years since its founding. Most have dealt with HBV discrimination.
"HBV discrimination is a huge problem in China, those who carry the virus face a difficult life," Yu said.
One of Yirenping's most famous cases in Beijing happened in 2007, when it represented an engineer called Gao in a legal action against his employer, BYD Auto. Gao had been fired for testing positive for HBV in a mandatory blood screening. Yirenping won the case and Gao was awarded 20,000 yuan in compensation for lost wages and mental anguish.
"Even though the money was very small compared to compensation one might receive in Western countries, it was a big victory for us," Yu said. "It proved discrimination is wrong."
Yirenping's victory in Gao's case was made possible by a 2007 Ministry of Labour and Security regulation that prevented HBV screenings by companies in China.
Although the Chinese legal environment is slowly adapting to the realities of HBV discrimination, there is still a long way to go.
On Feb 10, China passed its latest law dealing with HBV discrimination. The new law bans mandatory HBV testing of individuals applying for jobs or for school admissions.
In particular, HBV tests will no longer be part of broader health checks for college entrance examinations, and compulsory tests for public-sector job applicants will be dropped.
But even with the new regulations, discrimination is still widespread because companies find ways around the law or local authorities lack the knowledge and resources to enforce the new rules.
"Instead of making potential employees take a direct HBV screening exam, companies indirectly check through yearly health exams," Yu said.
"Also, some companies refuse to hire new applicants unless they sign a paper promising they will submit to blood testing. Some companies are not respecting the law."
Even with the obstacles that remain, Yu is quick to point out that the law is a step in the right direction. It is a sentiment that is echoed by Dr Samuel So, founder of the Asian Liver Center at Stanford. So has been working toward prevention and control of HBV in China since 1996. He has cooperated with officials from the Chinese government and the World Health Organization, as well as advocacy groups including Yirenping.
"It is an important step toward eliminating the decades-old discriminatory practices against those chronically infected with HBV," So said. "However, it remains to be seen whether the law will be enforced at the provincial, city and country levels."
Organizations that work toward eliminating HBV, and the discrimination associated with it, often point a finger at a general lack of knowledge and misinformation about HBV as the main reason why so much discrimination is faced by HBV carriers.
In China today, it is easy to find people who have little knowledge about the transmission of HBV.
"When I was young, my mother told me never to eat or spend time with people who had HBV. She was afraid I would catch it," said a 24-year-old postgraduate student at Tsinghua University who would only identify himself as Victor.
"After going to university I learned better, but a lot of people don't know the facts," he said.
So believes the root of this uninformed discrimination is a hepatitis A outbreak across China in the 1980s.
"The misconception and stigma associated with the outbreak became enshrined by laws." So said. "That is probably why hepatitis B discrimination is so unusually widespread in China today."
As bad as a lack of knowledge is, misinformation is even worse.
"Some medical companies and hospitals have advertisements with false information about HBV transmission to sell their products. It's illegal but they still do it largely unabated," said Yu.
According to the World Health Organization, hepatitis B is mainly transmitted by blood, sexual contact, unsafe injections, or from mother to child. It is not transmitted through casual contact and is preventable through vaccinations.
In the end, both Yu and So agree that it will come down to education and government enforcement of laws regarding HBV discrimination, if progress is going to be made.
"Education is crucial for eliminating the stigma of HBV but also in prevention," So said. "The government needs a nationwide awareness campaign to promote everything from vaccinations to modes of transmission."
"Apart from education, the government needs to more strictly punish employers that discriminate, and support the role of NGOs in identifying and helping those who are discriminated against," Yu said.
(China Daily June 1, 2010)