A call for better rare disease treatments and better insurance coverage

By the end of last year, more than 40 drugs used to treat rare diseases were part of the national medical insurance system, which should significantly reduce the financial burden for patients and their families, experts said at a conference. seminar on insurance coverage for rare diseases. in Shanghai.

Experts said it was important to put in place a mechanism to ensure patients have easy and affordable access to medicines, including multi-source funding, a simplified application system, legislation for rare disease treatments and the creation of a special medical insurance fund to cover rare diseases.

“In addition to health authorities, other government departments like civil affairs, disabled people’s federation and finance should provide grants and support for rare disease treatments. We should also encourage more individual and private institutions “. participation in the prevention and control of rare diseases,” said Dr. Xu Hong of Fudan University Children’s Hospital, who offered to improve treatments for people with rare diseases during the two sessions. from Shanghai this year.

Diseases with incidence rates of 0.65 to 1 per 1,000 people are identified as rare diseases, of which more than 7,000 have been identified worldwide. About 80% are hereditary, affecting 350 million people worldwide and more than 20 million in China. About half of people with rare diseases are children. Only 5% of these diseases can be treated with drugs, which are very expensive.

Awareness of this problem has increased in recent issues, when the government medical insurance system has begun to improve coverage. However, more clinical research and supportive policies should be introduced to improve the prevention and control of rare diseases, experts said at the seminar.

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