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    The Activists Ending Discrimination Against Hepatitis Carriers

    A large and vocal community of equal treatment advocates say that while protective policy has come relatively quickly, effective implementation still lags behind.

    This article is part one in a series on how people with hepatitis B fight against discrimination in China. Part two can be found here.

    In 2003, Zhou Yichao applied for a position in the local government of Xiuzhou, a district in the city of Jiaxing in eastern China’s Zhejiang Province. He passed all the tests, ranking fifth among hundreds of applicants. But he was turned down for the post because he carried the hepatitis B virus (HBV).

    When Zhou learned that the results of a compulsory medical examination had led to him being rejected, he attacked the government’s human resources employees with a knife, killing one and severely wounding another. A court sentenced him to death. When the judgment was handed down to him, he tore up the paper, and his mother fainted.

    Zhou was by no means the first victim of HBV discrimination in China. While he expressed his anger and frustration through violence against those he believed had wronged him, some desperate HBV carriers have chosen to take their own lives, while others have retaliated even further. In 2005, a young woman in eastern China’s Jiangxi province was fired by her employer and dumped by her boyfriend because a medical examination determined she was an HVB carrier. So she set her boyfriend’s house on fire, nearly killing his parents.

    HBV discrimination in China can be traced back to the enforcement of administrative regulations in the 1980s. Back then, job seekers were required to take medical examinations according to standards outlined in the “Technical School Student Admissions Medical Test Standards and Implementing Regulations,” a document promulgated by the Ministry of Human Resources and Social Security and the Ministry of Health in 1981.

    HBV testing became compulsory in the spring of 1988, when a hepatitis A epidemic broke out in Shanghai. Regulations were passed forbidding the employment of hepatitis patients and carriers in the food, pharmaceutical, health, water supply, and education sectors. Since these laws and administrative regulations did not distinguish between the different types of hepatitis viruses and their transmission channels, vast groups of HBV-positive people, regardless of the severity of their diseases, have suffered increasing discrimination in the job market, school applications, and romantic relationships.

    There are an estimated 120 million hepatitis B patients and HBV carriers in China. Despite the size of this community, most remained silent about discrimination until the internet brought them hope. They set up online forums to exchange information and provide support to one another. More importantly, they used the internet to form an articulate community and find creative ways of engaging the government in conversation.

    A number of bulletin board systems and online chat rooms emerged in the late 1990s to combat HBV discrimination. Of these online forums, Gandanxiangzhao Luntan — whose name literally meant “devoted to each other, heart and soul,” which in Chinese contains the words for “liver” and “gallbladder” — soon became a go-to haven for HBV carriers seeking support and advice. The objectives of most online forums were to provide mutual comfort or to exchange information about how to “cheat” during medical examinations.

    Besides psychological support and practical tips, discussion boards on Gandanxiangzhao also include health information, social activities, and a number of regional sub-boards for establishing communities at the local level. These sub-boards are extensive and include users from far-flung regions such as Xinjiang and Tibet.

    Lu Jun became a moderator on Gandanxiangzhao in 2003. Largely thanks to his efforts, the primary goal of the online forum shifted from inward discussion and community toward outward advocacy for a new anti-discriminatory policy. One of the most successful activities was the submission of a public letter to former Premier Wen Jiabao in 2004 signed by members of the HBV community and their allies. Zhao Yuhong, another moderator, wrote an open letter to Wen and posted it online in July the same year. With the endorsement of the Hepatitis Network — a loosely organized network of nine forums and websites — the letter received over 4,000 signatures in 20 days.

    The letter was then sent to Zhongnanhai, a former imperial garden neighboring the Forbidden City in Beijing and the current headquarters of the Communist Party of China and the State Council, China’s cabinet. It urged the central government to take decisive action to eliminate discrimination. The Ministry of Human Resources and Social Security and the Ministry of Health both responded a few days later, going on to release a public announcement in August expressing concern from the central government and promising to draft anti-discrimination policies. The announcement also invited citizens — especially HBV carriers — to give suggestions for amending existing laws and regulations.

    Lu and a team of forum volunteers began drafting a proposal against HBV discrimination. In September 2004, Lu went to Beijing and delivered the proposal to seven central government ministries. After a few rounds of revision, a new employment promotion law was passed in August 2007 by the Standing Committee of the National People’s Congress, China’s top legislative body, containing the statement: “Employers shall not refuse to hire a person based on whether they carry the pathogen of a transmissible disease.” In 2009, a series of new laws and regulations were issued to remove restrictions on employing HBV carriers in government departments and the food and beverage industry.

    The 2004 public letter was a sign of the vocal HBV community finally engaging the central government in an anti-discrimination dialogue. As Lu explained in a 2010 interview with me, it was surprising that the letter resulted in such a timely response from the state.

    Since 2005, the focus of anti-HBV discrimination has gradually shifted away from advocacy for new policy and toward proper implementation of existing policy. In December 2006, Lu founded the Beijing Yirenping Center, an NGO aiming to eliminate discrimination arising from health-related issues.

    Yirenping has few connections with the government. It has established bases in Beijing, Zhengzhou, and Shenzhen, and styled its website as an information center for publicizing various anti-discrimination voices and events. Their goals are to defend HBV carriers’ rights, provide legal and medical counsel, draw attention to violations of anti-discrimination laws, and organize various educational activities. Today, the service continues to fight for the cause of anti-HBV discrimination in China and around the world.

    Lu has continued to play a leading role in this campaign. In 2007, after Finnish electronics giant Nokia was prosecuted for HBV discrimination, a netizen released an internally circulated document about the company’s hiring policy toward HBV carriers. Follow-up posts encouraged applicants rejected by Nokia to join the protest and demand a public apology.

    Later, in November 2008, Lu went to Finland and protested in front of Nokia headquarters, attracting the attention of Finnish media. In February 2009, a survey on HBV discrimination of 92 international companies based in China was posted on Yirenping and brought about a new round of legal action against discriminatory employers.

    While Lu was leading the online anti-discrimination campaign, Lei Chuang, another Chinese activist, adopted more creative ways to fight against HBV discrimination in the real world. Like his contemporary, Lei and his story give valuable insight into the lives of China’s hepatitis patients and their long, often fraught, struggle for equality.

    Editors: Wu Haiyun and Matthew Walsh.

    (Header image: A HBV carrier hugs a participant during a volunteering event promoting equal treatment for people with hepatitis in Wuhan, Hubei province, Jan. 3, 2013. Liu Zhongcan/VCG)