SOUTH CHINA MORNING POST, MAY 21, 2009
A people ignored
BY PAUL MOONEY IN HENAN
It was just before the Lunar New Year in 2007, and 12-year-old Ling Ling was once again running a high temperature. Her mother took her to the local county hospital. Their doctor said it was just a respiratory infection. 'It's nothing,' she said. 'Take your medicine and go home.'
But, just a few days later, the girl's condition worsened and she began to lose consciousness. Wang Yuehong found a friend with a car and they took the sick girl 300km to a larger municipal hospital in Xian, Shaanxi province .
Doctors examined the girl and asked Mrs Wang if her daughter had ever had a blood transfusion. She was at first uncertain but, after some prodding, said she had received plasma when she was 18 months old, but not a blood transfusion.
'It's the same,' the doctor shot back, sounding angry. 'You're daughter has Aids.'
Mrs Wang says she had never heard of the disease before, although Henan province , where she lived, was already facing an HIV epidemic. The disease had spread widely after poor farmers tried to earn money by selling blood to illegal and unsanitary blood banks that sprang up in the 1990s, often under the auspices of local governments and the military.
About four years after getting the transfusion, Ling Ling began to suffer frequent colds, diarrhoea and fevers, making repeated visits to the county hospital where doctors handed out pills and shooed mother and daughter away. 'They just told me that her resistance was not good,' Mrs Wang says.
However, it was not that simple. The hospital had already been sued by several Aids patients as early as 2002, and so knew there was a serious problem. Xu Haibo, of the Korekata Aids Law Centre in Beijing, says at least 100 children were infected at that hospital alone, but that no effort was ever made to track down patients for testing. Worse, doctors remained silent for at least five years while the health of these patients deteriorated. In the meantime, many died not knowing what their illness was.
Mrs Wang returned home on March 27 and the next day sold her apartment for 20,000 yuan (HK$22,700) to cover the costs of her daughter's medical care. 'I couldn't sit there and watch my daughter die,' she said.
The day after, she and Ling Ling boarded a train to visit Beijing's Ditan Hospital, which specialises in infectious diseases. Here, Ling Ling was able to get paediatric drugs to treat her Aids through a co-operation between the Clinton Foundation and the Chinese government, and her health began to steadily improve.
Mrs Wang then returned home to confront the doctors at her county hospital. They denied any responsibility and said the young girl's medical records had disappeared (along with those of others infected with HIV). 'It was just an excuse to exempt itself from responsibility,' Mr Xu said.
The HIV and hepatitis C that Ling Ling also contracted from the blood transfusion have pushed the family into poverty. While the government covers the cost of HIV/Aids medicines, the family has to pay for treating the hepatitis C and other opportunistic diseases. They also have to stay in a small hotel for weeks, sometimes months, when they visit Beijing.
The family makes the tiring journey whenever Ling Ling feels sick. Sitting in a Beijing park recently, Ling Ling, who is bent over in pain, is asked how many times she and her family have visited the capital. 'More times than we can count,' she says.
Attempts to get compensation from the hospital have proved difficult. The provincial government, which has long tried to hush up the problem for fear that the publicity will affect investment, has ordered courts not to take Aids cases. When Mrs Wang began seeking treatment in Beijing, local officials told her not to go, but she defied them.
'When you face Aids, you have to be strong,' she says. 'You have to face this every day - there's so much pressure. If I hadn't come to Ditan Hospital, my daughter would not be here today,'
Mrs Wang refuses to allow her hometown to be mentioned, fearing that local officials may retaliate. Indeed, such officials would like people like Mrs Wang and her daughter to just disappear.
Li Dan, founder of the Korekata Aids Law Centre, said local officials were playing a waiting game. 'Officials feel that, when these people die off, there won't be a problem any more,' he said.
Mrs Wang met Mr Li at Ditan Hospital in 2007. The young graduate student got involved in Aids activism after seeing Philadelphia, an Oscar-winning film about Aids. With the help of the Korekata centre, the family sought compensation not for Aids, but for hepatitis C, a case that the court could accept.
However, on November 27 last year, the day the case was to open, a court official told the family the judge was on a trip and the case would not be heard. An irate Mrs Wang stormed into the court office and demanded of an official: 'Are you going to hold a hearing or not?' He summoned a judge and the case went ahead - but a ruling was never made.
Mrs Wang has since petitioned government officials in her home county and in Beijing; there has been no response. Ling Ling wrote to Premier Wen Jiabao ; she has yet to get an answer. 'I won't give up,' Mrs Wang says.
Ling Ling is one of the fortunate ones. According to a report released in April by Asia Catalyst, a New York-based non-governmental organisation, thousands of HIV-positive children on the mainland are not getting the care they need.
The report, 'I Will Fight to My Last Breath: Barriers to Aids Treatment for Children in China', describes gaps in the government treatment programme, the refusal or inability of some hospitals to offer treatment, and local government inertia and even interference. It says there is a lack of doctors trained to deal with HIV/Aids, and that many rural doctors are unable to recognise the symptoms; some turn patients away out of unfounded fears of contagion. Many children die without even knowing that they had what rural people call 'the no-name fever'.
Mrs Wang says that Ling Ling's Aids appears to be under control; the hepatitis C is the bigger problem right now. 'We found out too late,' she says.
About a dozen times a day, Ling Ling reaches into her bag and pulls out a small box of multicoloured pills. She has not gone to school for two years. Mrs Wang says its because she is too weak to deal with the strenuous academic routine, but one suspects it is also because she wants to protect her daughter. Some Aids children have been refused entry to school, where teachers and classmates ostracise them.
In many ways, she is not much different from other 14-year-old Chinese girls. She wears a Hello Kitty watch, carries a white Mickey Mouse bag and her room is decorated with fluffy stuffed animals.
Yet, her sadness is evident. She is reluctant to leave the family apartment. 'She doesn't have contact with her friends anymore, because she's afraid they'll ask her questions,' says her mother. 'She doesn't go out because she worries she'll run into her classmates.'
Sitting in a local hotel in her hometown, Mrs Wang says she cannot cry anymore. 'I have no tears left,' she explains. Then her mood suddenly shifts. 'Sometimes I feel there is no hope, that she has no future. She's sick and she can't go to school. When I see other kids going off to school with their school bags, I feel so bad,' she says, her tears returning.
Mrs Wang is especially bitter abut the doctors who hid the truth from her for so many years. She insists that the infected children should have been tracked down and examined. 'Why didn't they do that?' she asks angrily. 'They knew this was the problem as early as 2002 and they didn't tell anyone.'
Despite all she's been through and the challenges she still faces, Ling Ling retains an admirable optimism - her user name on QQ, an internet chat site, is 'Tomorrow will be better'.
And despite the pain, her main concern is about how it affects her parents. 'Ling Ling is worried about me,' confides Mrs Wang. She admits to peeking at her daughter's diary recently. On the page she opened, Ling Ling had written: 'I want to see my mother smile again.'
Some names in the story have been changed
© 2013 Paul J. Mooney