How Creative Activism Frees Hep B Carriers From Discrimination

2017-06-15 04:07:59

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

In his speech at the 2017 Asian Pacific Association for the Study of the Liver (APASL) Conference, equal rights campaigner Lei Chuang claimed that building up community support “won’t set us free from discrimination. We still need more and more activists to take action.” Speaking on behalf of 120 million Chinese hepatitis B patients and hepatitis B virus (HBV) carriers, Lei articulated their determination to fight for equal treatment and the elimination of discrimination.

Lei grew up in rural Zhongxian County, near the city of Chongqing in southwestern China. He remembers that when he was young, the local medical clinic commonly reused syringes. Both he and his brother were diagnosed as HBV carriers in 2002.

Lei did not understand the significance of their diagnoses until his brother was repeatedly denied jobs back in 2007. Witnessing his brother’s struggle was a sobering experience for Lei, who resolved not to become another victim of anti-HBV discrimination. Instead, he decided to educate the public about how hepatitis B is transmitted.

Brandishing a poster explaining the often-misunderstood transmission channels of the disease, Lei first publicized his identity as an HBV carrier during an anti-discrimination campaign near West Lake in Hangzhou, the capital of eastern China’s Zhejiang province. Over the following two years, he took part in performance art projects in many cities across China, raising public awareness of the disease and urging the government to abolish laws that discriminate against those with the virus.

Lei’s tactics were often highly creative. He sent a basket of white pears to the Guangzhou labor bureau in southern China’s Guangdong province, because the word for “white pear” sounds like the word for “pressure” in Chinese. He also invited strangers to dine with or hug HBV carriers to show that everyday physical contact does not transmit the virus. This kind of performative campaigning, as Lei explained later, drew interest from both the media and the general public. “Our [individual] influence is limited,” he said in an interview with QQ News, an outlet owned by internet giant Tencent. “Only through our action can we attract the attention of the public. Change will follow this attention.”

Lei Chuang, 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

Lei Chuang, 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

Lei does not take much personal credit for his contribution to the abolition of discriminatory laws. When I interviewed him in March, he described himself only as a “participant” in the ongoing anti-discrimination campaign. But he has undoubtedly been a significant participant: He was the first HBV carrier to receive a health certificate allowing him to work in the food industry, which people with hepatitis had previously been barred from entering. He wrote more than 2,000 open letters to former Chinese Premier Wen Jiabao, asking him to discuss the plight of hepatitis patients. He lobbied representatives of the National People’s Congress (NPC) — China’s top legislative body — to submit proposals to reform discriminatory laws. He sent a petition signed by more than 2,000 HBV carriers to the government, outlining policy recommendations.

Lei insists that his actions did not play a decisive role in changing national policy. But his campaign helped build and empower a community that learned both how to articulate their opinions and how to effectively invoke a response from government. This response was key to policy changes that later removed legal and institutional foundations for HBV discrimination.

Though determined and courageous, Lei understands that direct confrontation with the authorities rarely works in China. Engaging the government in a constructive dialogue has been his primary concern since day one of his campaign. He learned from his early interactions with local governments that nonconfrontational performance art was probably the best strategy to achieve his goal.

Since 2009, as the central government has gradually abolished discriminatory laws, Lei has focused his attention on the second stage of his anti-discrimination campaign: ensuring that hepatitis treatment is covered under the public medical insurance system. In 2013, he initiated the “Long March to Beijing” campaign, in which Lei and his supporters walked over 800 miles from Shanghai to Beijing, before submitting policy recommendations to the National Health and Family Planning Commission (NHFPC) calling for price reductions for hepatitis B medications and changes to public medical insurance.

Lei’s campaign helped build and empower a community that learned both how to articulate their opinions and how to effectively invoke a response from government.

The Long March campaign has become an annual activity. Not all of the growing number of participants are patients or carriers, yet come rain or shine, they walk alongside one another to advocate fair treatment for people with hepatitis. In addition to posting photos of the march on social media, Lei and his community members also lobbied NPC representatives, requested support from hepatitis experts in China, sought a dialogue with the World Health Organization, and wrote to the NHFPC.

The publicity surrounding the campaign has also brought Lei his fair share of criticism, not all of it justified. A web user even stated that Lei’s ultimate goal was to solicit donations rather than effect policy change. Instead of taking the bait, Lei responded with admirable restraint, telling a reporter that he would strive to be more transparent with donations and that he believed the price of treatment would drop if his team continued their efforts. “I believe the price will come down in 2015 or 2016,” he said. “If it does not, we will keep fighting.”

Fighting on is Lei’s creed. The central government issued laws in 2010 prohibiting medical examinations of candidates for both university enrollment and the job market, and the legal system no longer justifies discrimination against HBV carriers. However, Lei noticed problems in the enforcement of these laws when he learned about severe violations of HBV carriers’ human rights. “If the law isn’t implemented, it might as well be written on toilet paper,” he said.

Lei fully understands that promulgating new laws is not enough to change people’s attitudes. Deepening public knowledge of hepatitis is equally if not more important in eliminating groundless fear and persistent bias. In 2015, a student in the northern Chinese city of Tianjin infected with hepatitis took her own life after her medical history was released to her roommates and teachers. She faced insurmountable pressure all because one ill-researched health lecture given by the Tianjin Education Bureau claimed that saliva was the primary transmission channel of hepatitis B and that everyday contact can pass the disease to others — a statement unsupported by medical evidence.

After hearing about the tragedy, Lei immediately wrote to the Tianjin Education Bureau demanding that it correct the false information. As he went on to state in his APASL speech, the anti-discrimination campaign now faces four major challenges: First, evidence of discrimination is hard to collect. Second, the HBV community lacks awareness of its legal rights. Third, the law neither adequately punishes discriminatory employers nor adequately compensates victims of discrimination. Last but not least, the public still attaches a strong stigma to both patients and carriers.

Over the last seven years, Lei has made remarkable progress in fighting discrimination against people with hepatitis. Perhaps most importantly, the Long March campaign brought about a significant reduction in the price of hepatitis medicine. On May 20, 2016, the NHFPC announced that the cost of tenofovir disoproxil, a key hepatitis medication, would be cut by more than 50 percent.

Now, Lei has a new goal: He is developing an app to help the 120 million Chinese living with hepatitis B to access affordable medical services and to improve their quality of life. Lei is seeking opportunities to cooperate with both experts and government officials in order to further aid the HBV community. But this change in direction does not mean he will give up fighting against prejudice in society. “I am a citizen,” he said, “and I don’t want to remain silent in the face of discrimination.”

Editors: Wu Haiyun and Matthew Walsh.

(Header image: Lei Chuang holds up a placard promoting equal treatment for people with hepatitis in Nanjing, Jiangsu province, Jan. 17, 2013. VCG)