SEP 16, 2001

A Chinese Family's Ordeal in a Nation in Denial of AIDS




UZHOU, China Shen Jieyong was happy to buy his pregnant wife transfusions when she returned to their rural hometown to give birth in 1998. The doctor said she needed blood, and the couple owners of a hair salon in this bustling tourist town saw being able to afford it as a sign of their prosperity.

"Our home village is poor, so for my wife to receive transfusions seemed like a kind of honor and a luxury," explained Mr. Shen, whose neat button-down shirt and slacks speak to his success.

In the weeks before their daughter was born, doctors at the Nanzhang No. 2 Hospital in Hubei Province gave his wife, Chen Xiumei, four infusions of blood, said Mr. Shen, all unscreened for infectious diseases and each purchased off the street from someone paid to donate.

Last November, Ms. Chen died of AIDS from one of those transfusions. Since then, Mr. Shen has spent countless hours tenderly carrying his weak and coughing 3-year-old to doctors here and even in Beijing, looking to treat the deadly virus that is slowly killing both him and his pretty, wide-eyed girl. He hopes that a lawsuit he has filed for compensation will pay the expenses.

"I'd heard of AIDS before, but it seemed something very distant from our lives that would never touch us," he said, his listless daughter in bright red shoes clinging to his neck, her cropped hair thinning out in patches.

As China takes steps to combat its growing AIDS epidemic, the government has made blood safety its first technical priority, earmarking $117 million this year to improve blood banks. Transfusions are still dispensed like Tylenol in the Chinese countryside and, as the Shens discovered, much of the blood there has been collected outside official channels and in violation of basic medical practice.

But the Shen family's tragic three- year saga also contains all the subplots that will make H.I.V. a challenge to control here: ignorance, denial, discrimination, weak laws and a rural health system that is expensive, corrupt and virtually bankrupt.

Since his H.I.V. was diagnosed last summer, Mr. Shen has lost his wife to AIDS and his friends and business to discrimination, and has had to flee his home in fear. His daughter and she is really all he has left is wasting away without proper medical care.

Violating national regulations on patient privacy, local officials have warned neighbors that he carries H.I.V. They have hampered his efforts to publicize his plight. They blocked a recent visit by a reporter and warned Mr. Shen not to meet a foreign journalist.

"I'm not afraid of this disease and I've tried to be optimistic," said Mr. Shen, speaking this summer in one of several interviews this year. "But I've suffered intense discrimination because of it."

Just last week, as the case was about to be publicized, the court in Suzhou declared the Nanzhang Hospital guilty, awarding Mr. Shen over $1.2 million, the largest judgment ever for an AIDS patient here. But Mr. Shen knows it is a cosmetic victory. . Chinese courts have little power to enforce penalties in distant provinces and poor rural hospitals cannot afford to pay them.

Reached by phone, a senior accountant at the hospital, who would give only his surname, Zhang, said: "There's no money to pay for this judgment. You can't expect the hospital staff to starve to death to pay for him."

No Risks, So It Seemed

The Shen family did not appear at risk in a country where most H.I.V. carriers are intravenous drug users or prostitutes. They were hard-working, upwardly mobile Chinese who had found their way out of the poor wheat fields and rice paddies of central Hubei Province to a comfortable life on the outskirts of Suzhou, in Jiangsu Province.

They moved to Suzhou in 1995, where they learned haircutting and rented a small salon. Business boomed. The Shens bought a house though they were technically illegal rural migrants. That is partly why, when Ms. Chen became pregnant in 1997, she did not get much prenatal care. "We tried to go to the women's clinic for checkups but because we weren't registered as locals it was difficult and too expensive," Mr. Shen said.

Ms. Chen continued to spend long days on her feet, although by her seventh month, regular customers noted she looked puffy. The couple went to the Wu County Hospital in Suzhou, where doctors said she was anemic and treated her with blood, from a government blood bank, that had tested negative for H.I.V.

With the delivery date approaching, the Shens headed back to their rural hometown, Nanzhang, where as natives they would pay cheaper hospital bills and they had parents who would care for the baby.

In Nanzhang, doctors said Ms. Chen's blood pressure was high and that she needed more blood. Although Mr. Shen said his wife "seemed quite O.K.," and it is normal to be anemic throughout pregnancy, doctors admitted her to the hospital and began transfusions.

Anemia in pregnancy is generally treated with iron supplements.

To make matters worse, for each transfusion, doctors in Nanzhang simply got in touch with a blood seller with the right blood type and asked the person to come in. Each seller would lie down to have blood drained into a glass bottle. Within 5 to 10 minutes, it was hanging at Ms. Chen's bedside, the stranger's blood dripping into her veins.

"I met two of the blood sellers they were both local men in their 30's or early 40's," Mr. Shen said. "As far as I know, there were no tests on the blood and the men had no checkups."

By 1998, it was known to scientists that H.I.V. had entered the population of blood sellers in central China, mostly poor farmers looking to make cash. In addition to selling to hospitals for individual patients, many blood sellers, looking to make money in a poor province, also sold at illegal collection stations, where highly unsanitary procedures infected many with the virus.

Nanzhang is not far from the border of Henan Province, where blood selling was widespread and the percentage of former blood sellers infected with H.I.V. is over 50 per cent in some villages. One survey published in China Preventive Medicine this year found that in 1999 nearly 10 percent of blood sellers tested positive for H.I.V. in Xingfan County which includes Nanzhang.

One explanation for Ms. Chen's illegal transfusions, experts said, is that China's official blood banks generally meet less than half of hospital patients' needs, since only a small percentage of Chinese are willing to be voluntary blood donors.

The blood shortage is accentuated in rural areas since remote health stations may have little access to blood from blood banks. In a recent article about Ms. Chen's case in The China Health News, one local official said that her illegal transfusions were "a case of having no other option," noting that Nanzhang, a poor mountainous county, is about 20 miles from the county seat.

In the same article, a hospital representative admitted that doctors in Nanzhang knew that the transfusions should have been checked for H.I.V. and hepatitis, but said that the hospital did not have the ability to conduct such tests. Still, a doctor in the hospital's main office angrily insisted that the hospital has used "only clean blood from the central blood banking system" since 1996.

But experts say there is also a powerful financial incentive for rural doctors to procure and sell blood on the sly: Illegal transfusions have become a cash cow for rural hospitals that have lost much of their government funding in the last decade as the government puts greater emphasis on market forces. In this way, the salaries of doctors and nurses may be covered.

While blood from official blood banks is expensive, hospitals often pay poor blood sellers about $5 and then sell their blood for whatever the market will bear. Mr. Shen estimates that he paid over $250 for blood in Nanzhang.

Patients in China today generally must pay their own health care costs. Virtually no one has health insurance and there is no government money to support the treatment of H.I.V. or any other disease.

All Infected, and Overlooked

On Feb. 5, 1998, Shen Cheng was born, a few weeks early and a bit small, but otherwise apparently healthy. The Shens moved back to Suzhou, where they bought their beauty salon.

But by 1999, there were already signs that neither mother nor daughter was entirely well. Ms. Chen was beset with an endless sequence of colds, coughs and strange rashes. The baby had boils and other skin problems and at 18 months developed a severe case of tuberculosis forcing her to stay in the hospital for more than three months.

Both had obvious signs of H.I.V. infection that were overlooked by local doctors. Finally, in June 2000, a doctor suggested an AIDS test.

"As soon as I heard the result I knew it was certainly from the transfusions, since she hadn't done anything else that could get her infected," said Mr. Shen, a handsome man who so far has only minor symptoms of infection. "Me and my wife were totally above board and totally loyal to each other."

Shortly thereafter, Mr. Shen took his tiny daughter and went to be tested. "I was pretty sure that she would have it, but I never dreamed that I did too," he repeats over and over. "I thought one of us might have gotten it, but not both. It wasn't like I expected."

Mr. Shen apparently acquired the virus through intercourse with his wife and Shen Cheng, at birth, from her mother.

Although the Shen family's lawsuit initially named both the Wu County Hospital and the Nanzhang No. 2 Hospital, courtroom evidence strongly suggested the latter was to blame.

Of the three farmers who sold blood for Ms. Chen's four transfusions, one has tested negative, one is missing and the third who was never tested had since died of tuberculosis, a common infection in people here with AIDS.

It is unclear how many people in China have been infected from transfusions although a handful of cases are now in the courts. Government experts estimate that 600,000 Chinese are infected with H.I.V, although foreign experts have put the number at more than twice that.

A Pariah, Living in Poverty

For the last year, the hard-won prosperity of Mr. Shen and his wife has been steadily eroded..

Shortly after his disease was diagnosed, health and commerce officials in Suzhou forced Mr. Shen to close his beauty salon, informing him that "there was too much risk of him passing on his infection to clients," he said.

Although national regulations passed by China's State Council declare that "no unit or individual can discriminate against people with AIDS," local authorities have wide leeway in dealing with the disease. According to Jiangsu Province's infectious-diseases laws, people with H.I.V. must accept "restrictions on the scope of their activities."

Ms. Chen died in November, just four months after her disease was diagnosed. Unable to breathe easily or eat for weeks before her death, she died at home because the family had long since run out of money for her care. After officials in both Suzhou and Nanzhang spread the word that AIDS was the cause of death, Mr. Shen said, the whole family became untouchable. Even relatives in Nanzhang who had no contact with the Shens were made to suffer as their children were spurned by others.

Fleeing discrimination before it swallowed them up, Mr. Shen sold his home and moved his mother and daughter to sixth-floor walk-up here, in a deserted gray cement building in an industrial zone on the southern edge of Suzhou. In this no-man's land, Mr. Shen had hoped to live anonymously.

"I'm trying to give my daughter a normal, happy life," he said, earlier this summer. "Here I hope she can play with other children because we're keeping our disease a secret."

Nonetheless, his life has been a bramble of interwoven worries. Unemployed, he has worried about the rent and how he would feed his daughter. She is a pretty girl with shy eyes, whose health is clearly failing: her skin bears the scars of infections that have been slow to heal. She is small for her age and is losing weight. She weighed 30 pounds when she turned 3; she weighs 27 pounds now.

In a country where only a tiny fraction of doctors know anything about H.I.V., it is hard to know where to turn. Fearing his daughter will be abandoned by doctors, he generally does not reveal that Shen Cheng has H.I.V. "When my wife told doctors in Suzhou, they all refused to treat her," he said.

But the quest for long-term treatment may also be academic since he does not have enough money to pay for it. The Suzhou court ordered the hospital to deliver a preliminary payment of $6,300 in May which was received but the cash is already half gone.

In August, he stormed into the court in Wu County to demand that he immediately be given enough cash for a year's treatment. In response, the judge placed him in detention and only released him two weeks later when his mother came pleading that she, alone, could not care for Shen Cheng.

When he got home, his new landlord, having learned the family carried H.I.V., was trying to evict them. With his condition out in the open again, Mr. Shen said he had nothing to lose. "I feel I have no choice but to stand up and speak out" for ordinary Chinese with AIDS.