Progress in rare disease care, but some drugs still costly

China has made remarkable progress in rare disease care, as treatments have become available in China's market for most rare diseases, yet patients suffering from some rare diseases that require costly medication are still in need of more support, according to a new report.

As of Oct 1, all the 16 treatments for a total of 14 rare diseases have been included into the national drug reimbursement list, including five that have been officially launched to market, according to a report health information consultancy IQVIA released during a rare disease summit held last week.

Among those treatments, six either cost less than 100,000 yuan ($14,953) a year or have cheaper versions of generics, and five have especially good efficacy for five rare diseases, which cost more than 1 million yuan a year and require life-long medication.

As China's drug regulation reform deepens with new drug registration for rare disease accelerating, more treatments for rare diseases will be launched in China, increasing patient accessibility to new drugs and expanding their choices, the report said.

It also suggested establishing a national fund to ensure rare disease patients can receive costly treatment.

Chen Hao, director of drug regulation and management research center under Tongji Medical College of Huazhong University of Science and Technology, said it is difficult for the country to rely only on the government to ensure rare disease patients' access to quality treatment, because China has imbalanced economic development and medical insurance capabilities among regions.

He suggested using the internet and social capital to help solve the problem.