Justice tough to find for Chinese who got HIV/AIDS through tainted blood

Reporting from Xincai, China —  It was just a small bump on the head, the result of one boy pushing another against a desk. It was such an unremarkable occurrence in a third-grade classroom that it should have been forgotten a day later, buried in the recesses of childhood memory.

Who could have imagined that it would dictate the course of Tian Xi’s life and of those around him?

After the incident, the 9-year-old was sent home from school to rest. That night he threw up, so his mother took him to Xincai People’s Hospital No. 1, where a young doctor fresh out of medical school diagnosed a mild concussion and recommended a transfusion for a quicker recovery.

His parents collected their savings, the equivalent of six months’ salary, to buy four bags of blood. They didn’t want their son, a top student who they were sure would be the first in their family to attend a university, to miss too much school.

It was April 1996, and few people in this small city in Henan province had ever heard of HIV/AIDS.

Now 23 years old and weighing only 112 pounds — the result of the early stages of AIDS — Tian is confined to a detention center in Henan province. He is charged with storming uninvited into the offices of the director of the hospital where he was infected with human immunodeficiency virus and sweeping everything off the top of the desk with his arm. A fax machine, computer and water cooler were broken in the Aug. 2 incident. He is to be sentenced soon.

“He just wanted to sit down and talk about what happened to him because of a mistake made by the hospital,” said his father, Tian Demin, 53, sitting on a squat metal stool in the single room where he and his wife live off a back alley — the rest of their house has been rented out to raise money for their ailing son.

The room, with tile flooring and a ceiling fan, looks less like a home than a law office stuffed with legal papers, medical reports and many dog-eared petitions that their son has written imploring various government officials for help.

Tian Xi is one of perhaps 1 million Chinese infected with HIV, the virus that causes AIDS, as a result of blood transfusions at government-run hospitals. About 1 million more people were infected through the process of donating blood. Although the cases date back to the 1990s, the Chinese government has yet to offer an apology or investigate a massive coverup that allowed the disease to spread exponentially after it was well known that the blood supply was tainted.

Besides free retroviral drugs, victims have received almost no compensation. When they’ve tried to file lawsuits, courts have in most cases either rejected their claims or refused to accept the cases. As a result, victims usually petition officials — an archaic system dating back to imperial times in which the aggrieved would travel to the capital to implore the emperor for help.

“It’s the worst way of handling things,” says Li Xige, 42, a former post office employee from a nearby town in Henan province who received tainted blood during a caesarean section in 1995. The girl she gave birth to died at age 8. She and a younger daughter are sick with AIDS.

Li did get compensation eventually (she is prohibited from disclosing the amount), but only after repeated petitions to President Hu Jintao and Premier Wen Jiabao, a stint in prison, another under house arrest and suicide threats.

“If you don’t fight, you’ll get nothing,” Li said. “It would be better for the government to come up with a plan for all us who are sick or who lost children.”

China’s handling of AIDS patients is a case study of a dysfunctional legal system in which victims have no other recourse but to take the fight for justice into their own hands — a lonely, embittered struggle that often puts them and their defenders on the wrong side of Chinese law.

If anything, the political space for AIDS activism has shrunk. Hu Jia, one the best-known AIDS activists, is serving a 3½-year sentence for “inciting subversion of state power.” His wife announced this month that she was closing the charity he’d founded because of constant harassment by police and tax authorities. Several prominent AIDS activists have fled to the United States.

“Ten years ago, we still could research AIDS; now it is extremely difficult,” said Wan Yanhai, a former public health official and head of a nongovernmental organization who fled in May and now lives in Washington. He believes the heightened sensitivity is because two out of the nine members of the Politburo Standing Committee, Li Changchun and Li Keqiang, served as Communist Party secretaries in Henan province, the epicenter of the scandal.

“These are extremely powerful people who could be held responsible for the blood scandal,” Wan said. “That’s why so many of us have had to leave China.”

The roots of the scandal go back to the mid-1980s, even before there was a term in Chinese for Acquired Immune Deficiency Syndrome. Trying to protect its blood supply against what was considered a decadent Western disease, the Chinese government banned the import of blood products and, in the spirit of Deng Xiaoping’s economic liberalization, decided to go into the blood business itself.

By 1992, blood collection stations sprouted throughout the countryside. Poor farmers were encouraged to sell their blood to get rich quick. “Extend your arm. Expose a vein. Make a fist. And it’s 50 yuan [$7.50]” was a popular slogan.

The blood stations often extracted the valuable plasma — which could be sold abroad for medication — and then re-injected the donors with leftover blood so they’d be able to give blood again without becoming anemic. Before re-injection, the staff often mixed the blood of various donors without screening for disease.

In Zhoukou county, about 60 miles away from where Tian Xi’s family lives, a doctor assigned to a blood station noticed a high rate of hepatitis among blood donors in 1994 and warned the Ministry of Health. Then, in 1995, the doctor examined a blood donor, who tested positive for HIV.

“I was very worried. If just one person was infected, everybody was at risk,” recalled the doctor, Wang Shuping. On her own initiative, she collected blood samples from 52 donors and had them tested for HIV. Thirteen were positive.

“We’ve got to close the blood collection stations immediately and inform the donors. People are in big danger,” Wang said she told her superiors. The response, she said, was thugs sent to vandalize her clinic.

She fled China in 2002 and now lives in Utah.

Official silence turned mistakes into tragedies that begat more tragedies, as blood donors infected each other when their pooled blood was re-injected. They in turn infected spouses, children and blood recipients.

At the same time, hospitals were encouraging patients to get blood transfusions whether they needed them or not, offering doctors who sold blood commissions of $1 or $2 per bag.

“So many people were selling blood, you needed somebody to buy it,” said Tian Xi’s mother, Chen Minggui, 48. “We think that’s what happened with my son. When he bumped his head, he didn’t lose one drop of blood, but in the hospital they gave him a transfusion of four bags.”

Tian spent seven days in the hospital recuperating and receiving well-wishers. He was a popular boy; even the mother of the boy who’d pushed him came to visit and offered to help Tian’s family pay for the medical treatment. Tian’s mother declined the offer.

“Nah. Boys will be boys,” she said she told the other mother. “Besides, Tian Xi is going to be fine.”

Within a few years, Tian’s health deteriorated. He frequently got sore throats and unexplained fevers. He often missed school. He was once among the top 10 students in a class of 2,000, but his ranking fell to the top 300, respectable but not good enough for Tsinghua or Peking universities, the Chinese equivalent of Harvard and Yale, to which he aspired. He lost so much weight that his cheekbones jutted out of a skeletal head.

“Tian Xi is studying too hard. Make sure he eats more,” his mother recalled the neighbors telling her.

Despite heavy government censorship, news reports about AIDS among blood donors began appearing in 2000. Tian’s parents didn’t pay attention: Although of modest means, they didn’t associate with the kind of poor villagers who sold their blood to make money. They barely remembered their son’s hospitalization. But, in 2004, they received notice from the hospital that everybody who’d had transfusions should get tested for HIV as a precaution.

Tian got his results July 19, 2004. By a strange coincidence, it was the same day the results were released from the gaokao, the all-important test Chinese high schoolers take to apply to university. He’d done well enough to go to a decent, if not top tier, university in Beijing — and he had one of the most dreaded diseases.

“He was crying all the time. He wanted to kill himself,” his mother said.

Against all odds, Tian did go to college, studying software engineering in Beijing. Henan authorities initially agreed to some aid — about $1,400 a year to subsidize his education. The university helped him rent a room in a basement off campus in Beijing because it didn’t want him in the dormitories. But the assistance stopped in 2009 when he graduated.

Unable to get a job with his poor health, and unable to afford expensive medications for hepatitis C, which he also contracted with the transfusion, he remained in Beijing, bringing his petitions to the Health Ministry, the Supreme Court and any government offices he could approach without being arrested.

Tian’s petitions were an irritant to Henan officials, who pressed him to stop his campaign and return home. Finally, on July 23 of this year, Tian received a text message from Xincai county’s Communist Party secretary, Gu Gouyin, asking him to come home from Beijing to negotiate a settlement.

“I will help you find a solution to your problems,” the message read.

When Tian arrived for an appointment in Xincai, Gu had been called out of town for business. They rescheduled, and again Gu failed to show up.

“He realized it was a trap. Tian Xi had been lured down here because he was embarrassing people by petitioning in Beijing,” said his father, who added that his son had only brought a month’s supply of his retroviral drugs from Beijing and had initially gone to People’s Hospital No. 1 to request medication, which the facility refused to supply.

The family doesn’t deny that Tian Xi behaved badly, not only knocking equipment off the director’s desk but also showing up repeatedly at the hospital, trying to visit the director at home and vandalizing an office door.

“Tian Xi’s case is symbolic. There are so many patients who were just seeking compensation and got into the same kind of trouble because they ran out of legal options,” said Liang Xiaojun, Tian’s Beijing-based lawyer.

Wan Yanhai, the former health official turned activist, said blood recipients have gotten less compensation than blood donors.

“The blood donors lived in the same villages. They got together and attacked government offices. They became powerful,” Wan said. “The blood recipients are scattered all over the country. They are isolated and don’t have a group identity.”

Even today, many transfusion recipients who might be HIV positive have not been tested and have not been notified that they are at risk.

Wan said tainted blood might have been used for transfusions as late as 2004, and that well over 1 million people could have been infected.

Official statistics, however, are lower. The Health Ministry reported that 740,000 people were living with HIV/AIDS as of the end of 2009, and that 220,000 others had died of the disease.

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