Life on the edge in the 'village in the city'(2)

Li Shuyi, 5, has been diagnosed with acute lymphoblastic leukemia. His family has spent all their savings to treat his illness. Gao Bo / for China Daily

Costly treatment

Doctors in the hospital in Hefei told Zhang and her husband that treating Dai's illness could cost them a lot of money, and the most effective treatment would be a bone marrow transplant. However, that's likely to cost hundreds of thousands of yuan, partly because of a dearth of bone marrow sources.

They can't afford the treatment, but while they are still able to borrow money from relatives, Zhang and her husband refuse to give up.

By December, Dai had already undergone eight courses of chemotherapy, combined with medication to alleviate the lack of fresh bone marrow.

A single week long course of chemotherapy costs 5,000 to 6,000 yuan, but the overall cost can soar because the immune system becomes weaker after treatment, leading to a higher incidence of infection.

Many of the drugs used to combat infections are imported and there-fore not covered by the rural residents' medical insurance. The costs can be crippling: For example, each tablet of the most-commonly used drug, an imported anti-fungal treatment called Voriconazole, made by the US company Pfizer, costs 400 yuan. Patients are advised to take two tablets a day.

Dai has had several bouts of infection, and Zhang said he still has an infected lesion in one of his lungs.

In September, Li Shuyi contracted blood poisoning from a decaying tooth. The treatment cost his family nearly 120,000 yuan, according to his mother, ZhangMin.

As migrant workers in Bengbu, a city in the north of the province, the 36-year-old and her husband work long hours and their ignorance of the system resulted in a failure to buy medical insurance for the family. That means they have to shoulder the burden of payment themselves. So far, the couple has spent more than 200,000 yuan on their son's treatment.

"Most of the money has been borrowed from relatives and friends, but it seems it's never enough. Now our relatives and friends don't answer our phone calls, because they are unable to lend us any more," ZhangMin said.

Although some relatives have given money with no expectation of repayment, Zhang Min said she would try to repay them when Li Shiyu has recovered.

Although the government-backed medical insurance reimburses 40 to 60 percent of the outlay, depending on which county the patients come from, medicines that fall outside the approved list, such as most of those used to treat infection, are not covered. That means the parents have to foot the bill themselves.

Donations

To make matters worse, many parents are too busy to look for work because they have to care for their children, ferry them to and from hospitals, and deal with emergencies, such as a dramatic drop in the number of blood platelets.

In desperation, Li Xiaojing, 25, who studied at a technical secondary school, sought help from the media. At the beginning of December, a newspaper launched a donation project for eight families, including Li Xiaojing's on its Sina Weibo micro blog. By the end of last month she had received just 3,000 yuan, while the other seven house-holds received far less.

Until two years ago, Shao Shanq in was a migrant worker in Shanghai, and his son Shao Liangyu attended a local primary school. When the father returned to Hefei, his son moved with him and started at a key middle school in the city. His good academic performance made him popular with his teachers and schoolmates.

When the 14-year-old was diagnosed with acutemyeloid leukemia, the school donated 40,000 yuan toward his treatment costs. The money didn't last long, though, and so his father approached the boy's old school in Shanghai to ask for a donation, even though he knew the chances were slim.

The boy's former teacher replied saying a donation seemed impossible because Shao Liangyu was no longer a student at the school, but he promised to tell the boy's former classmates about their friend's plight. Shao Liangyu received more than 3,000 yuan from the teacher and his old classmates, who also sent him many greeting cards.

"Their gracious donations moved us very much," Shao Shanqin said.