Government urged to ease financial burden on patients with rare diseases(2)

Processed foods have not been officially deemed as medicine, so public health insurance doesn't reimburse their costs, Zhao said.

"For children with a Beijing resident permit who have been diagnosed with PKU in the city, the Beijing government provides a certain quota of special formula for them free of charge until they reach 6," said Zhao, whose daughter just turned 6. "Now I need to pay more than 6,000 yuan ($964) a month for these processed foods for my daughter, since she can't eat unprocessed rice or flour, meat or eggs."

Zhao said she quit her job and has been taking care of her daughter ever since she was diagnosed with PKU as a baby, and her husband makes 5,000 yuan a month. Zhao said she's forced to turn to her parents for financial support.

Currently, there is no legislation regarding treatment and health insurance for rare disease patients. In January, the Ministry of Health asked all provinces to include hemophilia, a disease with low prevalence rate, into the health insurance program for rural residents.

It also announced that some provinces will strive to reimburse PKU treatment for rural children, because their symptoms can be controlled effectively after standard treatment.

As leader of a Beijing-based community of PKU patients, Zhao said she will ask a deputy to the National People's Congress to file their proposal to include the treatment of all rare diseases into the public health insurance program, though the proposal has failed to be approved three years in a row.

"A single rare disease patient group utters a voice that's too weak. We need as many forces together as possible," she said.

"It's not enough to rely on just the government, the patient himself or the social groups for financing. They should shoulder the cost together," said Ding from Beijing Medical Association. 

Ding said she will file a proposal on legislation to protect the rights of rare disease patients at this year's Chinese People's Political Consultative Conference.

Access to medicine is another issue for rare disease patients in China.

According to Ding, medicine is effective in treating only about 1 percent of rare diseases.

However, most of these drugs, which are usually expensive because of only a small segment of the population uses them, are manufactured by pharmaceutical companies outside China, said Wang Chenguang, dean of the health laws study center of the School of Law at Tsinghua University.

"Researching and developing these drugs costs a large amount of money. The government should provide financial support to domestic medicine makers developing them to lower the cost. Also, we should protect their intellectual property rights and guarantee their market share. This way, they will be more motivated in developing them," Wang said.