Supplementary medical insurance vital for rare disease treatment – SHINE

Many budget commercial supplementary medical insurance products include provisions for rare disease treatments, but there is still room for improvement, experts on health, insurance and charity said during a meeting in Shanghai ahead of World Rare Disease Day on Monday.

A report released at the meeting stated 151 budget commercial supplementary medical insurance products in 27 provincial regions and four national projects have 62 clauses on rare disease compensation.

Many provinces and municipalities have introduced such budget supplementary insurance, which only costs a small sum of money each year, to help cover medical costs not covered by the government-run medical insurance plan.

In Shanghai, the insurance is called Huhuibao, which costs 115 yuan (US$18.2) per person per year, and pays up to 2.3 million yuan in compensation for medical expenses. It mainly covers specific hospital self-funded medical expenses, specific high drug costs, proton and heavy-ion medical care and other treatments.

Rare diseases are a part of the treatment that the plan covers. However, the type of rare diseases each product covers, compensation percentage and criteria for compensation vary in different provinces

More can be done to further build a rare disease-friendly society, said Guo Jinchuan from the Illness Challenge Foundation, the main contributor to the report.

Experts said more charity organizations can participate in rare disease prevention and control through cooperation with medical insurance plans. The Illness Challenge Foundation has collected 17.53 million to help more than 1,300 rare disease patients in the past four years.

Diseases with the incidence of 0.65 to 1 per 1,000 are identified as rare diseases. There are more than 7,000 rare diseases worldwide. About 80 percent are inherited, affecting some 350 million people in the world and over 20 million in China. About half of rare disease sufferers are children.