HONG KONG (Reuters) - Madam Yan and 11 other mothers in China turned to the All-China Women’s Federation for help after their toddlers were denied places in kindergarten after testing positive for the Hepatitis B virus.
“When I see other children going to school happily and mine is alone, my heart drips with blood,” Yan wrote.
Hepatitis B is preventable through vaccination and there are drugs to control the replication of the virus in carriers, such as Yan’s child, who shows no symptoms.
Risk of infection through casual contact is minimal, and in many places worldwide, most carriers go about their own business whether in school or at work, facing little or no discrimination. But in China, fear of the virus has reached hysterical proportions, health experts say.
Ignorance and relentless advertisements by drugmakers making misleading claims about the disease and touting all kinds of magic cures have built a climate of terror surrounding the virus, and discrimination against carriers, they add.
Many schools, universities and companies now subject students and staff to regular health checks to screen for the virus.
Toddlers who test positive are refused entry to school, older students are expelled, men and women can’t find work and some couples are forced into separation by terrified in-laws.
Qing Song, an activist who helps carriers fight discrimination at work, related a case where a young pregnant woman discovered her carrier status during a prenatal check.
“Her mother-in-law advised her to abort the child and fix her own health before trying to conceive again. But after the abortion, she was forced into a divorce and driven out of the family home,” said Qing, who is based in southern Shenzhen city.
Hepatitis B is endemic in parts of Asia and Africa.
Worldwide, there are 360 million carriers and a whopping third of that, or between 120-130 million, are in China.
China’s hepatitis B rate has historically been high but the reasons are unclear and it is not known if it may be due to genetic susceptibility.
Though 10 percent of its population are carriers, that figure is believed to be as high as 17 percent in its southern provinces, such as Guangdong and Guangxi.
The chief mode of transmission is from mother to child. Others include sex, blood transfusions and contaminated needles, including the reuse of needles to vaccinate children which was a common practice in China up until recently.
While a mature immune system in an older child or adult can flush out the virus, this is not the case for children under the age of 5 who contract the virus. It remains in their bodies, replicating quietly.
Drugs can only control the virus but not get rid of it and most of these younger children become carriers for life.
One in four of them are at risk of developing cirrhosis — scarring of the liver — or liver cancer later in life.
The Chinese government introduced free universal vaccinations for newborns in 2002, but actual coverage is inconsistent. Medical experts say more babies are vaccinated in the cities than in rural areas.
The government has tried to stop discrimination in recent years, reversing an age-old policy banning carriers from the civil service. Last year it banned companies from screening employees for the virus in health checks and using a positive test result as a condition to fire staff or reject new hires.
But these laws are difficult to enforce.
“Employers don’t give a reason anymore. They say you are a danger to others or that you will suffer prejudice. They persuade you to resign and they don’t have to compensate you,” said a lawyer, who carries the virus and declined to be identified.
“It (carrier status) has deep repercussions whether in employment, marriage or social relationships. If people know you have it, they will reject you because they think you will infect them,” said Ah Peng, who applied to work at a hotel but was rejected after a pre-employment health check showed he had the virus.
Consequences of such discrimination can be tragic.
Walter Shuai managed to escape health checks at his company for three years, but depression and the constant stress of being found out finally drove him to quit his job and leave China.
“You can’t imagine the situation if your colleagues come to know you’re a carrier. People are selfish and ignorant because of misleading (information) from the government and some doctors,” said Shuai, who works at a scientific institute in South Africa.
Ah Tian, also a carrier, said his childhood friend died at the age 26 from an overdose of drugs that a doctor prescribed with an assurance that it would get rid of the virus.
“There is so much prejudice, suffering, pressure and people are desperate, he was so anxious to get well,” said Ah Tian.
“This virus affects my job, family and love life, what else can be closer to us? Even my brother wouldn’t sit at the same table with me. I think of suicide sometimes.”
Editing by Megan Goldin