Rare Disease Day: China eases burden for rare disease sufferers

The end of every February marks Rare Diseases Day. Since 2018, China's healthcare insurance system started to cover some part of the medicine used for rare diseases. Reporter Lu Sirui talks to an expert to understand the effect of the policy.

The diagnoses and treatment for rare diseases have been put high on China's agenda in recent years. Patients now suffering from the 207 listed rare diseases will have part of their medical fees covered by the government. Also, 26 types of medicine will be covered half by their healthcare insurance. This has tremendously eased the burden of the unfortunate families.

ZHANG ZAIQIANG, Director, Dept. of Neuromuscular Disease, Beijing Tiantan Hospital "In the past, many diseases had no available treatment. When medications became available, they were often prohibitively expensive. Patients couldn't afford the treatment on their own. For example, in the case of spinal muscular atrophy, the cost for a patient would be over a million yuan per year if they had to bear the expense. Now, with medical insurance coverage, patients can manage the cost at a much more affordable monthly rate of one to two thousand yuan."

However, it is still far from satisfying. In China, about 20 million people live with rare diseases and 200 thousand people are newly diagnosed each year. Doctors say continuously inventing new and affordable medicine is vital.

ZHANG ZAIQIANG, Director, Dept. of Neuromuscular Disease, Beijing Tiantan Hospital "Currently, there are three types of medications worldwide for spinal muscular atrophy. These medications face intellectual property and commercial issues, making them expensive when introduced domestically. We are now independently developing a medication for spinal muscular atrophy, and it has reached the clinical research stage. In the future, with our locally-developed medication and medical insurance coverage, the overall cost will decrease significantly."

Efforts are also underway to build a national system among hospitals to deal with rare diseases. Lu Sirui, CGTN, Beijing.