Young China’s desperate Aids battle

Paul Mooney, Foreign Correspondent

• Last Updated: April 20. 2009 2:05AM UAE / April 19. 2009 10:05PM GMT

A drawing depicting happy home life by one Chinese child living with HIV. Courtesy Asia Catalyst

BEIJING // Lingling had a long history of being ill. From infancy, she suffered colds and fevers, but when her mother took her to the county hospital, doctors would invariably prescribe some medicine and then shoo mother and daughter away, insisting there was nothing wrong with her.

But when Lingling contracted a fever two years ago, Wang Yuehong decided something had to be done and took her daughter to a larger hospital in Xi’an, in nearby Shaanxi province. Tests immediately confirmed the doctor’s suspicion: Lingling was HIV-positive. Ms Wang said she had never heard the word Aids before.

Doctors determined that Lingling had been infected from a contaminated blood transfusion given to her at her county hospital when she was 18 months old, the same hospital that insisted there was nothing seriously wrong with her.

She was one of the countless people who were infected by contaminated blood supplied by illegal underground blood banks that sprang up in Henan province in the 1990s.

Ms Wang told her daughter’s story sitting on a wooden bench in a Beijing park, shortly after they completed a 10-hour plus train ride from their home.

The shy 14-year-old, wearing a Hello Kitty wristwatch and carrying a bag with cartoon figures, bent over grimacing.

When asked what was wrong, she pointed to her stomach. Her mother explained it was the result of a Hepatitis B infection, also contracted through the blood transfusion.

Activists introduced the family to the Ditan Hospital in Beijing, and since being treated here, her condition has improved, her mother said. The family travels to Beijing whenever she feels sick.

Asked how many times she has come here, Lingling said: “More times than we can count.”

Lingling is one of the fortunate ones. According to a report made public today by Asia Catalyst, a New York-based non-governmental organisation, although China has made strides in the fight against Aids, thousands of HIV-positive children are not getting the care and treatment they need.

The report, I Will Fight to My Last Breath: Barriers to Aids Treatment for Children in China, describes how HIV-infected children face challenges getting the help that they are entitled to, including gaps in the government treatment programme, poverty, the refusal or inability of some hospitals to offer treatment, and local government inertia and even interference.

The report says there is a lack of doctors trained to deal with HIV/Aids. In Henan and Yunnan, two provinces hit hard by the disease, many rural doctors cannot even recognise the symptoms and some turn away patients out of unfounded fears of contagion.

And despite government mandates that hospitals provide care, funding is often insufficient, which means there is a disincentive to identify or treat patients.

Many children die without even knowing that they had what rural people call “the no name fever”, either because the doctors never diagnosed the disease or else tried to cover it up.

“The law states clearly that hospitals cannot refuse HIV/Aids patients,” said Xu Haibo of the Korekata Aids Law Centre in Beijing, “but there is no way to punish the hospitals and so they violate the law.”

The Clinton Foundation’s HIV/Aids Initiative works with the Chinese government to provide first-line paediatric medications to families free of charge, but demand exceeds supply, and some children are given adult medications in broken dosages that cause side effects.

The government has not given an official figure for the number of children with HIV/Aids, but a senior adviser at the World Health Organisation in Beijing has estimated there may be 10,000 infected children, a number some say is conservative. In 2007, just 805 children were reported to have received antiretroviral (ARV) treatment.

Patients who have been on ARV drugs for a long time normally develop a resistance and so need “second-line” drugs, which are 10 times more expensive and are not a part of the government programme.

Although World Trade Organisation regulations allow countries to issue “compulsory licences” to produce such medicines, the US government has penalised countries for doing this; so far, China has not taken any steps to issue such licences.

“People are dying of Aids because they can’t afford second-line treatment, but China currently has the capacity to make these medicines,” said Sara Davis, executive director of Asia Catalyst.

She urges China to immediately issue compulsory licences and calls on the Obama administration to end the Bush-era policy of punishing countries that do this.

Another problem, according to the report, is that the government programme does not provide free medicines to cover the treatment of opportunistic infections, which come about because of the weak immune systems of people with HIV/Aids.

Ms Davis said families told the authors that they had to sell their homes, businesses and personal possessions to care of their children. “And they still didn’t have enough money,” she said.

Many rural families in marginal areas cannot even obtain treatment. They cannot afford the cost of moving their weak children over bumpy country roads to distant hospitals.

Doctors often cannot reach these patients to check on their condition because they do not have telephones.

Some families do not even know that free Aids treatment programmes are available.

Some of the children interviewed showed signs of severe depression and withdrawal, but the report said counselling is basically unavailable. One Aids specialist in Yunnan province told Asia Catalyst that many of the children she treats “are without hope”.

“They drop out of school, they stop taking their medications, they don’t see the need to continue,” she said.

Some distraught parents have abandoned their children. A doctor at a Beijing hospital described how the parents of an HIV-positive teenager left him on the road beside the hospital. His “family just said they couldn’t care for him any more”, the doctor was quoted as saying.

And while some of these families should be able to get compensation from local hospitals, regional courts in Henan refuse to accept HIV/Aids cases.

“Local officials think that this situation is detrimental to investment and so they’re not eager to confront the problem,” Ms Davis said.

Li Dan of the Korekata Aids Law Centre said local officials are intent on playing a waiting game.

“Officials feel that when these people die off, there won’t be a problem any more,” he said. When Ms Wang took her daughter to Beijing for treatment, the local health bureau tried to prevent her, fearing the story would leak out. But Ms Wang was adamant.

“If I hadn’t come to Ditan Hospital, my daughter would not be here today,” she said.

Ms Wang said her money is dwindling and that a county court, which accepted her case only because she was suing the hospital for her daughter’s Hepatitis B infection, and not HIV, has still not handed down a decision.

“The court stands on the side of the hospital,” she said, “and not on the side of our child.”

The Korekata centre persuaded the hospital to first pay 24,000 yuan (Dh13,000) a year to cover the girl’s medical costs, but this is insufficient, the centre said.

Xiao Li, 14, came to Beijing last summer for treatment just as the country was preparing for the opening ceremony for the Olympics, at US$40 billion (Dh147bn) the most expensive games ever. Asia Catalyst describes him posing for a photograph in front of an Olympics display in Tiananmen Square, smiling proudly while waving a Chinese flag.

He told researchers then that his parents had encouraged him not to give up hope: “They say that I should fight to my last breath and that they will treat my illness until their last penny is gone.”

His mother and father took side jobs to earn extra income; they borrowed money from friends and relatives, and his sister dropped out of school to help pay for his medical costs. He began to get better in Beijing, but by the end of the summer, those last pennies were gone.

Unable to afford further treatment, Liu Fang took his son back to Henan, where he died six months later. At the time of his death, his father was still struggling to win compensation to cover his son’s medical bills.

pmooney@thenational.ae