HBV carriers are dreaming of a better tomorrow

By Joseph Christian (China Daily)
Updated: 2010-06-01 07:49
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HBV carriers are dreaming of a better tomorrow

Outside, it was a bright sunny day as Wang, Judy and Dandan sat around a large circular table at a Sichuan restaurant near the bustling Zhongguancun computer market.

Although their hometowns are far apart, they share a common bond - they are all carriers of the hepatitis B virus (HBV).

Judy, who initially claimed to be the sister of an HBV carrier, began the conversation.

"I'm sorry I deceived you," she said as tears welled. "But I didn't know if I could trust you. You know the situation is very serious for us - I'm afraid I could lose my job."

Even with new laws and regulations in place that effectively ban discriminatory HBV screening at companies and universities, most HBV carriers are too afraid to reveal their status, let alone tell their real name to a reporter who knows they carry the virus.

"I've already been refused employment because of my HBV status. That's why I won't tell you my real name," said a man who only identified himself only as Wang.

The polite and soft-spoken Dandan, who is looking for work, shares Wang's concern.

"Sometimes, I live in fear. If a company I am applying to finds out I have HBV, I am certain I won't get the job."

Life is not easy for HBV carriers in Beijing, which is why so often they can be found banding together in an effort to ward off the discrimination they face.

The easiest and most common way for them to connect is through the Internet via QQ groups and other message boards. The most popular website that HBV carriers in China use is called "In the hepatitis B camp," which has more than 400,000 registered users. The website offers HBV carriers many useful services but to the carriers themselves none is more important than the platform it offers to meet other individuals they can trust and have a sense of comradeship with.

"The only people I tell about my condition are my family and close friends. Websites give me the opportunity to meet new people I can trust and be open with," said Li a 27-year-old postgraduate student at Tsinghua University who is preparing to study for a doctorate abroad because he is too worried about not finding a job in China.

Even though he attends one of the best universities in China, Li has already been turned down for jobs because of his HBV status.

Even though many HBV carriers in Beijing live in fear, 28-year-old Xiao Zhenhua has put that fear behind him to spread the duel message of HBV discrimination and awareness.

"One year ago, I was too afraid to use my real name, but now I have found the courage. People need to see a real face behind the HBV message," Xiao said.

In November 2009 Xiao, who is currently a postgraduate student at Beijing Normal University, co-founded the Yi Xing Marathon club with a fellow outspoken HBV carrier Lei Chuang. The aim of the club was to help change the negative perception that Chinese society has toward HBV carriers. To do so, Xiao often runs in various long distance races wearing a green T-shirt that says: "Eliminating HBV is another marathon."

In the past eight months Xiao has run various marathons throughout China, including the Beijing Marathon last year. The club has also given lectures at Tsinghua University and worked to educate both the public and HBV carriers about the virus.

"Life is very difficult for us. Personally, I have been refused employment by two companies because of my HBV. By running in marathons I want to give hope to my fellow HBV carriers. But I also want to let others know that life as an HBV carrier is as hard as running a marathon. There is still a long way to go before we are treated equally," Xiao said.

While a marathon seems to be a fitting symbol for life as an HBV carrier, in Beijing most who suffer from the virus believe everything would be easier with more understanding and respect.

"My family worries about my health but they always support me. To them, I am a daughter they love, not a danger to their health. I wish everyone could treat me like my family," said Dandan.


(China Daily 06/01/2010 page28)