A call for better rare disease treatments and insurance coverage

By the end of last year, more than 40 medications used to treat rare diseases were part of the nation's medical insurance system, which is expected to greatly reduce the financial burden for patients and their families, experts said at an insurance coverage for rare diseases seminar in Shanghai.

Experts said it is important to set up a mechanism to ensure patients' easy and affordable access to medications, including multi-sourced funding, a simplified application system, legislation for rare disease treatments and creating a special medical insurance fund for rare disease coverage.

"In addition to health authorities, other governmental departments like civil affairs, the disabled people's federation and finance should provide subsidies and support for rare disease treatments. We should also encourage more individual and private facilities' involvement in rare disease prevention and control," said Dr Xu Hong from the Children's Hospital of Fudan University, who proposed improving treatments for those with rare diseases during Shanghai's two sessions this year.

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

Awareness about this issue has increased in recent issues, when the government-based medical insurance system began to enhance coverage. However, more clinical research and favorable policies should be introduced to improve rare disease prevention and control, experts said on the seminar.