Originally created 09/13/99

Chinese AIDS sufferer battles bureaucracy, discrimination

BEIJING -- One of the last sounds Song Pengfei heard after doctors accidentally severed his artery was his blood cascading onto the operating room floor. One doctor, afraid the teen-age patient was dying, fled in panic.

The accident was another business opportunity for Li Changsheng, who made a living selling other people's blood. For 1,050 yuan ($126), he provided doctors with just over a quart for a transfusion that helped save Pengfei's life.

The blood also infected Pengfei with the virus that causes AIDS.

Now, Li and Pengfei are prisoners -- Li in a police detention center and Pengfei of an illness that he and his parents say has left them shunned by neighbors and kicked around by bureaucrats. Their plight offers an insight into China's struggle with AIDS and its financial, medical, emotional, legal and social challenges.

China has an estimated 400,000 people infected with HIV, but little money to provide them with expensive Western treatments that can keep AIDS at bay.

International health workers credit the government for reacting quickly to AIDS' inroads, but public ignorance about AIDS and its sufferers remains widespread. Recent official efforts to clean up China's blood supplies came too late for Pengfei and others infected by tainted blood.

Pengfei's ordeal began during the Chinese New Year holiday in February 1998, when he cut his leg by sitting on a pair of scissors.

The wound was slow to heal, so his parents took him to the No. 2 People's Hospital in Linfen, an industrial and mining city of 200,000 people near their village in the impoverished northern province of Shanxi.

There, doctors gave Pengfei two blood transfusions -- one before opening his leg to see what was wrong and another after they accidentally cut his artery during the surgery.

One panicked doctor ran from the operating room, "his face covered in blood," Pengfei's father, Song Xishan, recalled.

"He was petrified and his hands were shaking. He said: `The kid's in great trouble. What are we going to do?' I said: `What? What do you mean, in trouble? Quickly, go save him. How can you run out?"'

Pengfei, who was under local anesthetic, said he felt "a twang, like an elastic band or piece of string snapping."

"The operating table light was covered with blood; the doctors' faces were covered with blood. Then I fainted," the thin, intense 17-year-old said in an interview.

Only 10 days later, when Pengfei was in Beijing for further treatment, did doctors discover the transfusions had infected the boy with HIV.

Pengfei's father bitterly recalled his discussion with the doctor who introduced him to Li, the blood dealer.

Song said he asked the doctor if it wouldn't be safer to buy blood from the central blood bank and was told: "Don't worry, private blood is cheap and fresh. The blood in the bank has been stored for a long time; it's old and no good."

Pengfei apparently wasn't the only one infected. The 19-year-old donor used by Li also gave blood to another woman that day and said he had been selling his blood since age 15, Song said.

He said neighbors were tipped to his son's condition when officials visited the family's home to apologize, while wearing face masks and gloves they later discarded at the door. Some neighbors moved away, others pelted their house with stones, and Pengfei's school refused to have him back, Song said.

"The discrimination was quite terrible," he said. "People on the street looked very unhappy to see us. They'd swear and say, `Bastard, what happens if you infect the whole village?"'

About two-thirds of Chinese infected with HIV are drug addicts from rural areas, although the number of sexually transmitted cases is increasing, state media say. An unknown number have been infected by transfusions or by selling blood at unhygienic private collection stations.

Chinese have traditionally shunned donating organs or blood. The scarcity of voluntary donations encouraged a black market, with sometimes unscrupulous dealers and paid donors -- many of them poor rural migrants and others at the margins of society.

State media have reported on entire villages selling blood. In one village where half the adults sold blood, 17 percent tested positive for HIV, the Communist Party newspaper People's Daily said.

To clean up its blood supply, China introduced a law last October outlawing sales of donated blood and dealers. Days off and other inducements are being used to encourage people to donate.

Blood screening also has been improved. Liu Landi, a blood management official in Pengfei's home province, said blood is now tested twice and virtually all blood used there for transfusions is donated, not bought.

But a recent raid at Xiehe hospital, one of Beijing's best, showed that dealing continues. Police nabbed 14 "blood kings," who can earn up to several hundred dollars a day finding stand-ins for people sent by their employers to donate, the Beijing Evening News reported.

"Miss, are you donating blood? I can find someone to donate in your place," the newspaper quoted a dealer as telling its reporter. "Pay us and I guarantee there will be no problems."

Dr. Monique Gueguen, a blood safety specialist for the World Health Organization, said China has made "huge efforts" to clean up its blood supplies, particularly in larger cities, but still has a long way to go.

"I wouldn't mind having a transfusion in Shanghai, but to get a transfusion in Lanzhou (a provincial capital), no way. I would rather avoid it," she said in an interview.

The Songs now share a small, dim apartment in Beijing. It's their headquarters for what they say is a day-in, day-out battle to find money to treat Pengfei.

Most patients do not get anti-HIV drugs and instead are treated only for symptoms of the infection -- tuberculosis, diarrhea and other illnesses that prey on weakened immune systems.

Pengfei, however, is among a lucky group of six people chosen as China's first to get a combination of Western anti-AIDS drugs. Pengfei has responded well to the treatment, which has reduced the virus to undetectable levels in his body.

But the medicine is hugely expensive.

Linfen's hospital paid for the first year's treatment -- $15,700 -- what Song would have taken 54 years to earn in his former job in a textile factory. The hospital also has given money for living expenses.

In May, Linfen provided more funds for treatment -- just $6,000 this time, and paid directly to a Beijing hospital that treats AIDS patients. But the hospital has refused to release the money to buy more of Pengfei's medicine, Song said.

Without the funds, Pengfei has since May been getting his drugs from the Phelex Foundation, a Massachusetts-based charity that set up a "Saving Song Pengfei Fund." The foundation, headed by the son of a former senior Chinese official, says Pengfei now has enough medicine to last through January.

Song doesn't know what will happen after that. The family's fear is that if the drugs run out, the virus in Pengfei's body will rebound, with drug-resistance.

Appeals sent to President Jiang Zemin, Premier Zhu Rongji and other leaders have gone unanswered, the father said.

Pengfei said he feels officials have kicked his case around like a rubber ball.

"If they keep pushing me, my spirit will collapse. They don't sell guns in China, but if they did I ...," he said, his voice trailing off.

"He would have killed someone ages ago," his father said, finishing Pengfei's sentence.

Zhou Bin, a lawyer representing the Linfen hospital, admitted that "there have been some rough patches, some communication problems between the two sides."

He said they wanted a court to rule on compensation. "We hope to find a long-term solution," he said in a telephone interview. "We should think about his present and long-term needs."

The hospital, meanwhile, has cleaned up its blood supplies and "now they strictly follow national regulations," Zhou said.

Li, the blood dealer, is in detention awaiting sentencing on a charge of "illegally organizing other people to sell blood," said a Linfen police official, who would give only his surname, Zhu.

A laboratory chief may be charged in connection with Pengfei's case, the hospital's office director, Qiao Jiping, said. But two doctors in the case, Wang Zhaohu and Han Zhangjie, were released without charge after about a month in detention, Qiao said. Both are back at work, he said.


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