Story of song pengfei

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Health System in China fails as AIDS Enters
By ELISABETH ROSENTHAL
New York Times

BEIJING -- Song Pengfei passes his days in a spare 12- by 12-foot room moving from a bed with a red- checked blanket, to a chair, to a donated computer. His parents, their lives crammed into the adjacent sitting room, spend their days worrying. Shy to begin with, the soft-spoken 17-year-old says his energy and spirits are just "so-so." He fainted recently on a street nearby and lay on the ground until an elderly stranger rescued him.

"I almost never go out," he said longingly. "I read. I listen to music. I go on the Internet to learn about AIDS."

Song Pengfei is one of a small but growing number of Chinese infected with HIV, the virus that causes AIDS -- in a country that is largely unprepared emotionally, financially and medically to deal with them.

Since he became infected in February 1998 after a blood transfusion at a hospital near his poor rural hometown, he has been kicked out of a school that was afraid to teach him and from hospitals that refused to treat him. A thin, angular young man who looks like he stepped out of a Modigliani painting, he has endured the same biting discrimination that Ryan White encountered in rural Indiana when he was forced to leave his school in the early 1980s -- with much the same beatific stoicism.

But there is a crucial difference: The Song family knows that half a world away, American doctors now routinely prescribe an expensive regimen of pills that can help their son. In fact, Pengfei is one of a handful of Chinese who have tried the "AIDS cocktail," with dramatic results. And now, the Songs are desperately trying to force the hospital that gave him tainted blood or the government to pay for the pills -- a gargantuan task in a country where the public health system is in tatters, few have health insurance, and there are few legal remedies for medical malpractice.

"I really didn't want to expose this -- and I'm attached to the country, the Party, the people," said Song Xishan, Pengfei's father, an unemployed factory worker who wears a mask of depression as he tensely casts spent cigarette butts on to the floor. "But we are at a critical juncture -- the medicine we have is about to run out -- and I have to think about my child."

China's HIV problem is still relatively small -- only an estimated 300,000 people have the virus in the entire population of 1.3 billion, according to the Ministry of Health, and most are not sick. About 9 percent, including Pengfei, contracted the disease from unscreened blood transfusions; a great majority are intravenous drug users, according to Dr. Cao Yunzhen, an American-trained expert at the National Center of AIDS Prevention and Control.

But despite recent prevention efforts, the numbers are rising qickly. Meanwhile, HIV specialists are still rare, and discrimination and public ignorance widespread. The Songs' apartment in Beijing is a relentlessly glum place where hours pass without a glimmer of a smile. Pillows are made from old clothes found by the roadside. The rent and meals are donated by neighbors.

It all began with a minor accident in their rural hometown in Shanxi Province, when Pengfei threw himself down on a couch to watch television and gashed his thigh on a pair of scissors his father had left there.

A local doctor gave Pengfei a shot of penicillin and eight stitches. But 12 days later the area was still swollen, so the Songs went to a hospital in the nearby city of Linfen; doctors there said the boy needed minor surgery to clean out the gash.

But first, the surgeon advised, Song should go buy blood, since Pengfei was mildly anemic and would need a transfusion before the operation. Instead of using the city blood bank -- which the doctor said carried "outdated blood" -- he offered to introduce the Songs to a so-called blood boss, a middleman who would find a villager to donate.

Late last year, China outlawed such blood sales, which have long been a common source of both blood and income in rural communities. Official blood banks are supposed to screen blood for HIV.

On the morning of Feb. 18, 1998, Song gave the blood boss $40 and Pengfei received 300 cubic centimeters of blood drawn from a husky 19-year-old surnamed Qi. When Pengfei's simple surgery that afternoon unexpectedly resulted in near-fatal bleeding, the doctor instructed Song to buy another liter.

Although Pengfei survived -- Song believes the surgeon cut an artery --the doctors told the Songs to rush Pengfei by overnight train to Beijing to consult specialists. The family was much relieved when experts wielding sophisticated diagnostic equipment at a military hospital in thecapital declared their son would be fine, Song said.

But a few days later, when orderlies did not take Pengfei to an important test and doctors failed to report lab results, the family suspected a problem. And just two weeks later, the doctors abruptly announced that Pengfei would have to be moved to an infectious disease hospital; his blood tests had revealed hepatitis.

Song protested: Why should his son leave the hospital that could best reat his leg whenhepatitis is so commonplace in China? Only then did the doctors pull him aside. Within two weeks of his transfusion -- a short time but not unusually so -- Pengfei had tested positive for HIV.

"I had heard of it," said Song. "I knew that it was a terrible disease that made you thinner and thinner until you became a skeleton."

From that moment on, the family's life has been defined by a mad scramble for money and by massive rejection -- by officials, friends, colleagues, even doctors and nurses. It started the next day, when Pengfei was sent to the outpatient department of the infectious disease hospital for a specialized blood test. When he returned, the nurses refused to give him a bed in the ward. Penniless, the Songs slept in the corridor.

A few days later, Pengfei was admitted to Beijing's Ditan Hospital, home to one of China's few specialized HIV programs, where the Songs quickly exhausted their savings on tests and treatments. And although Pengfei's leg was healing nicely, his energy and appetite were succumbing to the virus. Dr. Xu Keyi, an infectious disease specialist who had trained in the United States, suggested they try the American medicines -- if the family could raise $16,000 a year.

It was an unthinkable sum for the couple, more than most Chinese earn in a lifetime. By April, the family, out of money, returned to Linfen, where Song hoped that he could press officials to clarify how his son had gotten HIV and then get the local health bureau to help pay for Pengfei's medicines.

Their homecoming was a night-mare. Local doctors descended on the family home to examine Pengfei wearing masks, gowns and gloves. When they left, they dropped the protective gear in a pile outside the front door.

"Right away the villagers knew about Pengfei's problem," recalled Song.

The school where Pengfei had studied computers and English refused to let him re-enroll. Hospital nurses would not give him infusions. The Songs found an old friend, a doctor, to do it. But when he had to leave town briefly and asked his wife, a nurse, to fill in, she ran out of the house screaming when she learned the boy had HIV.

The villagers sent petitions to the local government demanding that the family be expelled, and the Songs knew it was time to move on.

But by that time Song had made some progress: The local public security bureau disclosed that the blood donor, now in prison for theft, had tested positive for HIV. With prodding from a lawyer, the local hospital agreed to give the family $12,500 for drugs and $2,500 to start a new life in Beijing.

Last May, Pengfei started taking the powerful anti-HIV medications and within a month his viral load, a measurement of virus levels in his bloodstream, had dropped from 400,000 to 70.

"It was wonderful," Song said. "He was eating, he had energy, he would walk around."

They moved into a two-room apartment in south-eastern Beijing, supported at first by the Shanxi provincial government and, when that money dried up, by donations. A spate of stories in the Chinese press produced a few gifts, including the computer for Pengfei.

But it is a hand-to-mouth existence for the Songs, who are officially rural residents and therefore cannot readily work in Beijing. And doctors at Ditan Hospital have advised the family that they will need to raise more than $20,000 within the coming months to continue Pengfei's treatment after May 5.

Song spends his days tirelessly lobbying for justice and money. A little black book meticulously documents how on Feb. 1, for example, he wrote to China's Health Minister, Communist Party leader Jiang Zemin, and Li Ruihuan of the Communist Party Standing Committee. He has gotten no responses.

Officials in Linfen say they cannot afford that kind of cash -- more than the annual budget of small hospital in China. But with the case gaining attention from Chinese reporters, a delegation from Linfen is in Beijing this week negotiating some compensation. The officials have advised the Songs to take Pengfei back home for treatment, where it would be less costly. But the Songs scoff at returning to a place that so viciously rejected them.

As Pengfei watches his supply of pills dwindle, a curtain of gloom descends on the apartment. Said his father: "He has become so depressed worrying about his medicine."

( Reprint of this article for the Phelex Foundation is authorized by the author.)