Parents of Boy With Leukemia
Scramble for Cash to Cover
New Chemotherapy Round
Threat Seen to Social Stability

By Andrew Browne--Staff Reporter of THE WALL STREET JOURNAL
December 5, 2005; Page A1

BEIJING -- As soon as the money dries up, doctors warn, so will the drugs that could save the life of Cui Guangshun's 7-year-old son, Dejie, in the leukemia unit of Beijing Children's Hospital.

Such are the rules of China's pay-as-you-go health system: cash upfront, or no treatment.

Mr. Cui's wife, Yang Deyin, traveled more than 300 miles by bus to Beijing from their small farm on the grasslands of Inner Mongolia to be near her only child. For weeks, she camped out on a blue plastic chair in one of the hospital waiting rooms to save money on lodging, like dozens of other parents.

Back home, her husband pleaded with relatives and village neighbors for more loans to keep the boy's care going. Most nights, the mother queued up in a drab hospital lobby, littered with food wrappings and possessions, to use a touch-screen computer that told her how much of the family's cash was left. Sometimes the number flashed red, meaning the family was in arrears and prompting a frantic call to her husband.

In the past few weeks, Mr. Cui and Ms. Yang have been forced to accept a terrible reality: Even though their son's leukemia is considered highly treatable, they may never raise enough money to cure him. The hospital's estimated fees of $18,500 to complete an initial 6?month course of treatment are impossibly high set against the family's annual income of less than $350. Like two-thirds of China's population, they don't have health insurance.

"There's nothing for it," Mr. Cui sighed, slumped in the doorway of his red brick home on a recent afternoon. He said he had dug up his potato crop and sold it all. He had threshed his corn and sold most of that, too, leaving barely enough to make the steamed bread that keeps his family going through the winter. "I'll just have to fetch Dejie home to die," he said.

The struggle of one couple to save their son highlights a growing crisis in China's health-care system, one that millions of Chinese face even in booming cities like Beijing, where the children's hospital is just a few minutes' walk from upscale hotels and office towers.

Xie Jing, the chief doctor responsible for Dejie's ward, defends her hospital's insistence that patients pay for treatment ahead of time by putting money into a hospital-controlled account. "If the patients have no money to refill their hospital accounts, we have to stop giving them medical treatment," she says. "It's a national problem."

Health care is an issue vexing the world's most developed countries, including the U.S., where people without insurance can lose all their savings if they get sick. But in worst-case scenarios, people who need urgent care generally receive it. In the U.S., a poor family such as Mr. Cui's would be eligible for Medicaid. Japan and most European countries cover everyone through universal health-insurance programs.

That's not the case in China, where patients are routinely denied care if they cannot come up with the money to pay for it in advance -- even in emergencies.

The World Health Organization ranked China fourth from the bottom of 191 countries in terms of the fairness of its medical coverage in a survey issued in 2000. This March, a report from a Chinese cabinet think tank said that unless China overhauls its medical care, "it will directly affect economic development, social stability and public support for reform."

The country's top leaders have expressed alarm about the inequities. President Hu Jintao has promised to overhaul the health-care system as part of his promise to build a "harmonious society."

The crisis in China's health-care system is already showing signs of holding the country back. Health-care costs are one of the main reasons Chinese save as much as 40% of their incomes. That is money they are not spending to consume more goods, as U.S. officials have been hoping amid concern about the big U.S. trade deficit with China. Fewer than one-third of China's 1.3 billion people have health insurance. More than half of all health spending is out of pocket, according to the think-tank report.

A year ago, Sam Lin, a prosperous factory owner, took his pregnant wife to a hospital in the southern boomtown of Shantou to give birth. As he recalls it, the couple were startled in the waiting room of the maternity wing by a commotion. A woman who had just delivered her baby was bleeding profusely and needed an emergency blood transfusion. Mr. Lin heard nurses screaming at the bleeding woman's husband. "If you don't have any money, we don't operate," one yelled, according to Mr. Lin. He says he rushed up to the man, counted out a stack of banknotes and thrust them on him. He never found out whether his charity saved the woman's life.

As recently as the 1970s, China's health-care network covered just about everybody. Collective farms offered basic treatment and immunization. In cities, health care was a perk of jobs in the government and state factories, which often ran their own clinics and hospitals. But as China embraced free markets, the "People's Communes" were disbanded in the countryside, and thousands of state factories were shut down or privatized. Starting in the 1980s, hospitals were ordered to turn a profit.

Today, China has plenty of large hospitals packed with state-of-the-art equipment to compete for paying patients. To maximize revenue, hospital doctors routinely overprescribe drugs and diagnostic procedures, according to studies by the Chinese government and international bodies like the World Bank. Hospitals sell many drugs directly to patients and add a profit margin.

A World Bank study estimates that drugs account for more than 50% of all Chinese health spending. In the U.S., prescription drugs account for less than 15% of total health spending, according to U.S. government figures. The World Bank study says 12% to 37% of Chinese national health expenditures are wasted because of unnecessary drug prescriptions. "Hospitals have become huge corporate profit centers," says Chen Bowen, an official with the Society of Community Health Service, a nonprofit organization based in Beijing that advises authorities on health reform.

Gaps in the System

Government officials acknowledge the gaps in the system that make stories like Dejie's common. A Ministry of Health study in 1998 showed that 42% of people who checked out of hospitals discharged themselves, mainly because they had run out of money. Mr. Chen's research shows that in rural areas, 30% of children who die end their lives at home because their families can't afford hospital care.

At the Beijing Children's Hospital, doctors in the cancer ward quickly got to the bottom line. They explained to Dejie's mother that if the family's account dipped into arrears, that would be the end of the boy's treatment.

The hospital's Dr. Xie says doctors' income would be affected if they don't "push patients hard enough" to settle their bills. "Nowadays, doctors don't just treat patients. They've also got to chase for payment," she says.

According to hospital regulations, once patients owe more than $250, the doctor must issue a warning and take responsibility for getting the money. Usually patients pay in cash. Credit cards aren't widely used in China. "Hospitals are not charities," says Dr. Xie. "The biggest problem is the poor insurance system."

A hospital spokesman declined to comment on the case, referring inquiries to the Beijing Health Bureau, which referred calls back to the hospital.

Dejie first got sick with a cold in late September. For weeks before that, he had been complaining of fatigue and pain in his abdomen. The first doctor to examine the boy took blood tests but saw nothing suspicious, and prescribed stomach medicine and a cold remedy. By then, Dejie had turned a shade of yellow and was too weak to walk to school. A second doctor ran new blood tests but offered no better explanation.

Mr. Cui brought the boy to a larger hospital in the city of Chengde, five hours away by bus, where another doctor broke the news that he had leukemia. This doctor recommended they seek treatment in China's leading children's hospital in Beijing.

Mr. Cui recalls that when he heard Dejie had cancer, he stood in the road and sobbed. Dejie lifted his hand and dried his father's tears. "It broke my heart," he says.

Relatives describe Dejie as a studious boy who prefers staying indoors to playing outside among the chickens and pigs that run around the village. Mr. Cui has hopes his son will make it one day to college. He's proud of the way Dejie can memorize his school textbooks and boasts that the boy can even recite some passages backwards.

When Mr. Cui first carried his son through the front doors of the Beijing hospital in early October, the boy's once-ruddy cheeks had turned white. A chunky kid, spoiled at mealtimes by his parents, he was now so thin his father could gather him up in his arms like a baby.

Mr. Cui knew better than to expect any help from the government. He says the head of his village, a collection of 30 dilapidated homes reached by a potholed mud road, turned down his request for a loan, declaring Mr. Cui's collateral -- his house -- to be worthless. The local Communist Party secretary wasn't much help, either. "People die every day in China," Mr. Cui recalls him saying.

Mr. Cui imagined he had heard his son's death sentence. But at the Beijing Children's Hospital, a doctor put him straight. "If you have money the child can live," Mr. Cui recalls her saying. "If not, he will die."

Beyond that, there seemed to be nobody to guide a bewildered farming couple through the hospital bureaucracy -- even as the hospital's touch-screen computer showed they were burning through the equivalent of almost a year's income every day. "In this hospital," said Mr. Cui, "you get through money faster than toilet paper."

His parents couldn't bring themselves to tell Dejie he had cancer, but he found out from the other kids in the ward. The peasant boy with his strong country accent is a curiosity, and the other young patients have dubbed him Kentucky, as in Kentucky Fried Chicken, because of the way his Chinese name rhymes with the Chinese transliteration of Kentucky, which is "ken de ji."

The first round of chemotherapy lasted one month. Doctors warned that if they had to abandon treatment midway through the second round, when the boy's immune system would be shattered, he could easily fall prey to a life-threatening infection. But they went ahead anyway, with no guarantee that the family could raise more cash.

In China these days, the cost of serious illness quickly becomes a community burden. Of the 30 or so families in Guangming village, a settlement without electricity until 1996, half chipped in with loans that they could ill afford, Mr. Cui says. Those who didn't, he says, simply had no cash to spare. The All China Women's Federation drummed up support around the area with television appeals, as it often does when someone falls seriously ill. The stricken boy's classmates added their savings. Once, on one of Mr. Cui's visits to Beijing, the long-distance bus driver let him board free, and the conductor took up a collection among the passengers.

The strain of health-care costs is so severe it is plunging growing numbers of people back into the poverty from which they so recently escaped. At age 38, Mr. Cui is ruined, his debts of nearly $4,000 already amounting to more than 10 years of income. His relatives and neighbors who lent him money are worse off, too.

Medical horror stories have become a staple of Chinese state newspapers and investigative television shows. Last month, the China Youth Daily reported that the impoverished family of a 47-year-old migrant worker left her for dead at a crematorium in the eastern city of Taizhou after checking her out of a hospital where she was admitted with a brain hemorrhage. The woman was saved after undertakers noticed her hand moving and saw tears in her eyes. A hospital official confirmed the details of the story, and said the woman was now back in the hospital after donations poured in. The family apparently left her because they were too poor to pay for the treatment.

Such stories are fueling public anger. Mr. Chen, the Society of Community Health Service official, is helping the government stitch together a network of publicly funded community health centers, in effect replacing the system that was destroyed. But Mr. Chen says the effort will take up to 20 years. The government is also trying to build up the health-insurance system.

Admitting Defeat

On a late November day, Mr. Cui finally admitted defeat -- he couldn't pay for all his son's treatments. He tidied up the only heated part of the house back in Inner Mongolia, a cramped room with a concrete floor and bare walls. Mr. Cui and his wife were married there, and it contains their prized possessions: a thermos flask, a small television set, a red sofa. Below the window is a traditional heated platform bed, where Dejie used to snuggle warmly at night next to his parents and Mr. Cui's 80-year-old father.

The next day, Mr. Cui made the long road trip to Beijing and stood meekly by his wife as one of the doctors scolded them for getting behind on their payments. "We warned you about this at the very beginning," the doctor said, barely glancing up as her fingers tapped out a message on her mobile phone. "Now you've lost all your money and you'll lose the boy too." Mr. Cui stared down at his feet. His wife said nothing, but her eyes filled with tears.

Dejie is now midway through the second of five rounds of chemotherapy. Instead of resting in the care of nurses in the isolation ward, his parents checked him out to save money. It's a dangerous gamble with his compromised immune system. The boy is staying with an aunt in a village outside Beijing. This past weekend he picked up a cold. His father took him to the hospital briefly for treatment of the cold and as of yesterday, Dejie was resting again at his aunt's house.

His parents say they will deliver him back to the hospital in a week or so to try to complete the second round of chemotherapy with their last remaining money. But having checked Dejie out of the hospital, they will have to wait in line to get him back in because there are no beds available.

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