Wang Shuling’s skin is stretched tight over her bones and her body shakes like a leaf, to the point that she cannot walk on her own and her hands are not steady enough to lift a glass of water.
The epidemic in Henan, where some believe as many as one million people have been infected, was initially covered up, but in recent years the government has come relatively clean on its AIDS problem and taken steps to help victims, offering them subsidies and free medication.
But poverty and inept leadership keep Wang and many others from getting the kinds of treatment and other support they really need.
“Officials just hand out medicine and consider their work done,” said Wan Yanhai, an AIDS activist and director of the Aizhixing Institute of Health Education. “They are not trying to improve the lives of these people.”
Early this year, Wang switched from effective, but expensive, drugs she bought herself to the government’s free medication. Six months later she stopped taking those pills because they made her hands shake uncontrollably and left her neck painfully stiff.
“I refuse to take the government’s medication any more. I know there’s better medicine out there, but it costs more than I can afford,” Wang said, sitting in her modest house with bare brick walls and dirt floors.
Wang’s story is not unusual among the thousands living with AIDS in Henan and around the country.
China claims it has 840,000 AIDS victims nationwide, but that figure is less than half estimates from activists and expert groups. The United Nations has said China could have as many as 10 million cases in 2010 if it does not take AIDS seriously.
“Overseas experts say that the cocktail we are currently using to treat AIDS is incomparably bad. While it can help in some cases, the side effects are enormous,” said Chinese AIDS activist Hu Jia.
“A lot of people cannot use it, they cannot take the side effects, and sometimes using the cocktail will speed death, as their livers can’t handle the stress.”
The government’s free medication drive was hampered by the limited types of drugs available in China and the detachment of local officials, who might not even know the treatments were not working, Aizhixing’s Wan said.
“The government has done a lot, but there are still big problems. They rarely talk to people with AIDS about their treatments or their needs,” he said in Beijing.
“Doctors should prescribe medications to patients and clearly explain how to use them. But in China, these drugs are being doled out to patients by infectious disease control authorities.”
In the 1990s, while coastal cities grew wealthy from trade and industry, densely populated Henan encouraged villagers to sell their blood to earn money.
Plasma from the donated blood was extracted for hospitals and the remainder of the blood was then returned to donors to avoid anaemia, meaning one infected donor could pass the virus to all the others.
Now bone-thin except for a pair of swollen feet, Wang Shuling was one of the first in Shuangmiao to sell her blood. She earned about 45 yuan ($5) each time and encouraged dozens of her impoverished neighbours to roll up their sleeves with her.
“I don’t know how many times I sold blood. I did it any time I needed money,” she said.
In another part of Shuangmiao, a private orphanage for children with parents dead from AIDS is struggling to stay open.
It was established by Zhu Jinzhong, a local man who died of complications from AIDS this year. His wife, Yang Guixiang, 39, has kept the orphanage going, despite having little money and support from the local government.
“As long as I have food to eat, these kids will have food to eat,” Yang said.
When Zhu set up the village orphanage, known as the Care Home, 53 children lived under its roof. But in January 2004, local officials closed it down and moved almost all the kids to a government-run facility.
Now only four children live there all week and 17 visit on weekends.
The local government had also diverted a substantial donation to the orphanage from China Central Television to the state-run home, Yang said.
“Everything local officials have done is only meant to preserve their power. They won’t allow anyone to make them look bad,” said Liu Xin, 16, one of the children moved to the government orphanage. “They’re very selfish.”
On a warm Sunday morning, Liu and his friends rode to Yang’s house on a three-wheel tractor. Once there, they chatted and played chess, and in the afternoon they squatted on the floor of the dark living room, where pictures of Zhu hang on the wall, for a lunch of tomatoes and steamed bread.
“After I graduate high school, if I can, I want to do something like this to help people like me. I want to repay the favour,” said Liu, who lost both his parents to AIDS.
“There are people whose lives are much worse than ours. The government should take care of them. We already have care and love.”
Revision date: July 8, 2011
Last revised: by Sebastian Scheller, MD, ScD