Twice a week, just after school lets out in this small county in Henan province, a 13-year-old girl with a short bob and wide smile holds her parents' hands and walks two blocks down the street into the harsh fluorescent light of an emergency medical station.
There, she pulls back the waistband of her pants while a nurse dabs disinfectant, prepares a syringe and gives the girl's right buttock a quick jab. "It doesn't hurt," the girl said after a recent visit. "I'm used to it."
The girl, whose parents asked that her name not be used, has HIV, which they say she contracted through an unnecessary blood transfusion in 1995. Despite early symptoms suggesting she had the virus, doctors at the hospital that treated her said her problems were minor and unrelated to the transfusion. They gave her anti-inflammatory drugs and blister cream.
Not until March, when the family turned to another hospital in neighboring Shaanxi province, did doctors test the girl and determine she had HIV. "At the time, I almost collapsed. I just didn't want to live," said the girl's mother, who asked to be identified only by her surname, Li.
Hardly unique
The girl's experience is hardly unique in China, where despite official pledges at the national level to care for people with the virus that causes AIDS, local hospital and government officials frequently express reluctance to do so. Some fear having to compensate people who contracted the virus through blood transfusions, a common method of HIV transmission in China. Others fear that the publicity of AIDS cases will hamper local investment.
Communist Party leaders long treated AIDS as taboo. In recent years, however, China has won praise from the West for campaigns to raise awareness. In 2003, the government promised free HIV testing and counseling for all who wanted it, and free antiretroviral treatment for the poor. That year, Premier Wen Jiabao made headlines after being shown on state television shaking hands with AIDS patients.
And yet hospitals like the one here in Mianchi County not only fail to offer to test for HIV, they deliberately misdiagnose and cover up the problem, according to experts and Chinese who have contracted the virus.
They say the gap between the national official position and the practices of local officials is the result of a political system that makes it difficult to impose reform at a grass-roots level. The central government has the means to curb the epidemic, they say, but the control and corruption inherent in a one-party system prevent courts and state-run news media from uncovering abuses.
High stakes
The stakes are high. Experts fear that inaction by local officials in China is already contributing to spikes in the incidence of HIV-AIDS, which has spread from high-risk groups such as drug users and prostitutes to the larger public. There were 18,543 new cases of HIV reported in the first six months of this year, nearly as many as for all of last year, according to the official New China News Agency. China's estimate of 650,000 AIDS cases, among a population of 1.3 billion people, is extremely low, domestic and international AIDS groups say.
Here in Mianchi County, the lack of cooperation on AIDS issues extends to the judicial system. Henan province was the center of a scandal in the 1990s, when the selling of blood at unsanitary, often state-run health clinics led to an estimated 300,000 people being infected with HIV. Today, as many of those people seek compensation, they are being turned away by authorities who say that the national government's promise of free treatment has let local jurisdictions off the hook.
Zhou Xihong, a lawyer who has tried to help Henan families whose children have HIV, said the position of local officials was made clear to him when he went to court recently.
"They said AIDS patients can get free treatment, so the court doesn't have to process their cases," he said. "The rule is illegal. The right of action is the most basic right for people."
A man who answered the phone at the Henan High People's Court acknowledged that the court's refusal to take such cases was an unofficial policy but said that there was no formal document outlining the practice. In China, it is not unusual for an internal directive to be handed down instructing judges -- all of whom are appointed by the Communist Party -- not to take certain cases.
"Courts in Henan stopped getting involved in AIDS cases two years ago," said the man, who gave his surname as Wang. "It's hard to deal with AIDS cases. There are many people who have contracted AIDS in Henan, and it has gone beyond hospitals' capability to compensate them. This is the business of the state government."
Nonprofit AIDS groups have exploded in number from about 50 seven years ago to more than 300 today, but their ability to effect change is limited. Local governments do not trust the groups because they are not directly under the control of the authorities. Meanwhile, officials who welcome international aid are often suspicious of domestic nongovernmental organizations that receive funding from foreign groups.
As a result, many nonprofit groups are struggling to avoid government scrutiny. That task is made more difficult during a politically sensitive time -- the Communist Party Congress is next month, and the Summer Olympics in Beijing are less than a year away.
Not every province has failed to use caution or heed the central government's AIDS policies. In July, Hunan province decided to require entertainment industry workers to have AIDS tests every three months because the percentage of people infected with HIV through sex has more than tripled since 2005, according to the New China News Agency.
In Hubei province, the aid group Doctors Without Borders has been running an HIV-AIDS program in the city of Xiangfan since 2003. In a sign of its success, it will be handed over to local health authorities by the end of March 2008, said Luc Van Leemput, head of mission of the group's Belgian section. But in Henan, the group has tried for many years to develop an assistance program without ever getting a green light.
Little money reaching grassroots
International nonprofits donate money to China with the instruction that it be spent for work with local or domestic groups, but little of the money is actually reaching the grass-roots organizations, activists say. In a system that lacks transparency, money just disappears.
Central government officials "should be very strict about implementing their policy. If they don't establish a transparent policy, how do you know that the money at a local level will be used properly?" said Wan Yanhai, a former Health Ministry official who is now a leading AIDS activist and who was detained by Beijing public security officials last November. The money currently available is "far from enough to allow NGOs to have meaningful and comprehensive, preventative programs. Most of the money is taken away by government or government-controlled NGOs, and no one knows how it's being spent."
Aside from this, nonprofits' operations are being restricted at local levels. Last month, two AIDS conferences were canceled in the southern city of Guangzhou and one in Henan province. In addition, two offices of an AIDS group in Henan were shut down by police. The director of one of the offices was taken into custody; employees at the other were threatened with violence.
"Two police officers came to our office, threatening that I should leave 'as soon as possible,' " said Zhu Zhaowu, manager of the group, China Orchid, in Kaifeng. "When I asked why, they said that the public security situation in Kaifeng was not very good, and we should be careful in case some bad guys from underground organizations endanger us."
Struggle to survive
As nonprofit groups struggle to help, many Chinese with AIDS struggle to survive.
For now, Li, the mother of the 13-year-old with HIV, depends on loans from relatives and neighbors to help pay for her daughter's care. She has demanded compensation from the hospital but has not received it. She has been told she can't file a lawsuit. And she gets no free medicine. National policies have not reached her family.
The explanation, according to Henan's best-known AIDS activist, is simple. "The government's AIDS policy is superficial. It cannot really be implemented," said Gao Yaojie, a retired doctor who exposed the blood-sale problems in the province. She was allowed to fly to the United States in March to receive an award only after international pressure.
"There is a saying in the countryside," Gao said. "The village tells lies to the township government; the township tells lies to the county government; the county tells lies to the state council; the state council issues a document; the document is read by all levels of the government. After they finish reading it, they go into a restaurant, and the document is never put into practice."