China’s Scarlet Letter
It was a scarlet red A that the author Nathaniel Hawthorne used to ostracize characters in his novel, "The Scarlet Letter." If a character bore the infamous letter she was condemned and isolated from society as an adulteress.
It seems sometimes art imitates life, although in China it is not fidelity but blood that is separating people from their communities and friends. In this case, it is hepatitis B, a disease that has infected an estimated 130 million Chinese, about 10 percent of China's total population, according to the Asian Liver Center. When friends, employers or lovers discover someone is a victim, he or she is often simply abandoned.
Wang, a 19-year-old university student in Beijing, for example, broke up with his girlfriend as soon as he learned that she had Hepatitis B. At the time, he believed infected students were somehow different and, according to his description of their educational experience, they are treated differently also.
Separate dormitories. Separate showers. Separate sinks. The lunch tray of an infected student, said Wang, is even marked with a red X to indicate that the carrier has Hepatitis B, and that his or her tray needs to be washed in a separate facility out of fear that saliva will pass on the virus.
"These students are literally being ostracized from their classmates," said Naree Chan, a Cambodian-American who has first hand experience with this kind of discrimination while teaching in China. She has made it a point to learn about the disease. "If it is known they have hepatitis B, they are totally separated from the community. Discrimination is not just happening in the work place but in the schools too."
A university official, who declined to be named, confirmed this segregation, saying, "Students who are infected might be asked to go home to be cured." However, the majority of students with hepatitis B are chronic carriers, which means they cannot be cured, according to the Hepatitis B Foundation.
Yet, Zhang Jingyuan, an official at the University of Science and Technology in Beijing, a city which is often believed to be more progressive than the countryside, said she had no knowledge of such an arrangement by any university. She said if the doctor ordered separate housing, the university would comply, but not all people with such diseases need to be separated from healthy ones.
Two billion people around the world (almost one of three) have been infected by hepatitis B, according to the Hepatitis B Foundation, and an estimated 1 million people die each year from it and its complications. But while most of those infected go on to recover and rid themselves of the disease, more than 400 million people become chronic carriers. Of worldwide chronic carriers, 75 percent are of Asian decent, said Dr. Alan Tso, an associate medical director of the Chinatown Health Clinic in New York City. The issue has become a concern in the United States as many Asians continue to immigrate to the country.
The disease is caused by infection with the hepatitis B virus (HBV). Infection can lead to cirrhosis (scarring) of the liver, liver failure, and liver cancer. 80 percent of liver cancer worldwide is caused by chronic HBV infection. This is significant because liver cancer claims the lives of 1,645 people worldwide each day, according to the Asian Liver Center at Stanford University, which, according to its website, "is the only non-profit organization in the United States that addresses the high incidence of hepatitis B and liver cancer in Asians and Asian-Americans."
Asians and Westerners both are infected through contact with blood, unprotected sex, shared needles, and from an infected mother to a newborn baby during delivery. The most common transmission in Asia, however, is known as "vertical transmission," which is when the disease is passed unsuspectingly from mother to child. It is this vertical transmission that is the cause of the chronic form of the disease.
It is the word "unsuspectingly" that is most frustrating for Chan.
“If a mother gets tested and finds out she has hepatitis B, she can have her child vaccinated at birth, which would then break the cycle," Chan said.
While it is not clear why Asians first developed hepatitis B, it is the lack of vaccinations that is allowing it to remain prevalent. The disease is not genetic, but is passed on through birth, according to the Asian Liver Center. Testing and vaccinations can end the spread within a family tree.
“The hepatitis B situation is under control in Asian countries like Japan, South Korea and Singapore,” said Chan, who has done extensive research on the topic. “It is the poorer countries like China and Cambodia that don’t vaccinate and still have a problem.”
If determining that you have hepatitis B can prevent your grandchildren from getting it, why aren't more people being tested? The answer, according to Jordan Su, program director for the Asian Liver Center, goes back to discrimination.
As recently reported in the China Daily, a discrimination survey in 10 large Chinese cities, including Beijing and Shanghai, revealed that 85 percent of the 3,424 respondents believed discrimination in work and employment do exist.
One reason for discrimination, Su said, is the sheer size of China's labor force. She said employers have so many potential employees that not only is it possible to discriminate, often times it is beneficial. Su described vaguely worded laws against people with hepatitis B that could easily be interpreted by the local government for their own agenda.
For example, Su said a law might read that an infected person cannot be a cook. The local official will read this and decide it means a carrier of hepatitis B cannot hold any job in a restaurant, from waiter to hostess to busboy. The prospective employee would complain and the employer would deny it was discrimination and point to the law.
It is a vicious cycle. To prevent your offspring from having hepatitis B in the future you need to know you are infected, but to know you are infected is to jeopardize your present.
There are many examples of this throughout China.
Chan, a 2006 graduate from Stanford University in the United States, decided she wanted to give back to the continent her family fled years before. She enlisted in a program called Volunteers in Asia, and she was prepared to teach at Ouyang Yu Experimental Middle School in Hunan province. She submitted a resume and interviewed and was preparing for her departure when her blood test was sent to the school. Chan's mother passed hepatitis B on to her at birth in a Thai refugee camp. Chan's brother, who was born in America, was vaccinated.
It was only after receiving her blood test, that Li Jinhui, the Hunan school's contact person, informed Chan that she did not meet the school's requirement of having a Master's Degree and two years of work experience and she would not be allowed to teach at the school. That criterion was not met by either of the previous year's volunteers.
"HB isn't the reason why she can't work in China," Li wrote in an e-mail. "Of course, she must pass the health check. Whether she can pass the health check depends on China regulations. I don't think HB is a problem. As is known, she has worked in Beijing (after being rejected, Chan was hired to teach in Beijing), our capital. The fact told us HB won't cause any problem. So please let Chan know that work experience is last year's trouble."
"Misconception causes common discrimination in the work place and daily life," Su said. "If people know they have hepatitis B, they know they won't be able to get a job or even higher education. And so they don't want to find out or they hide it if they have it. "They stay silent," Su continued. "And since no one talks about it, neither is the government. They act like it's not urgent."
For Chan the silence is deafening.
"When I arrived in Beijing my boss thought I would always be tired and would need to rest," Chan said. "I told her hepatitis B doesn't affect my daily life. She told me to be silent about it. What is hard is that I have been. It hurts to know that my students, who I love, might reject me if they knew."
It seems, however, that enough whispers might finally be making some noise. The Standing Committee of the National People's Congress, China's highest legislative body, will examine a new draft law on employment, which contains a special clause on anti-discrimination. The clause states that discrimination against job seekers with respect to their background, whether it is with regards to ethnicity, gender, religious beliefs, age, or physical disability, will be prohibited.
But that law deals with discrimination of people who have the disease. What about being proactive and preventing future generations from getting it?
"It would cost a lot of money to face the problem and give vaccinations," Su said. "The government is more concerned with following the global spotlight and currently that is shining on HIV not hepatitis B."
Su said outside organizations, like the Asian Liver Center, were doing their part to try and educate the public. "We are working very carefully," Su said. "It is not our intention to get involved with human rights issues. We want to teach the public that they shouldn't be afraid to live with an infected person. We are strategizing ways to cancel the stigma but still give special care to those who carry the virus and need it."
The Asian Liver Center is embarking on an ambitious campaign in September when they intend to vaccinate 500,000 Chinese school children. For its own part, the Chinese Foundation for Hepatitis Prevention and Control (CFHPC), which is a foundation approved and registered by the Ministry of Civil Affairs, held a program last year in which more than 3,500 students at Peking University were offered free vaccinations, according to a press release from Seagate Technology, which co-sponsored the event.