China improving health care for rare diseases

Thirteen provinces and munacipalities in China have included drugs for Gaucher disease, a rare condition, into medical insurance to rehabilitate patients, experts said over the weekend.

China has the world’s largest population of people with rare diseases, with an estimated 15 million to 20 million suffering.

People trying to pay for treatments for rare diseases face bills that are on average three times their annual individual income, and nearly two times higher than their household income, according to a survey of rare disease sufferers carried out in 2015.

“Only one percent of rare diseases have drugs,” Dr. Meng Yan from People’s Liberation Army General Hospital said. “Gaucher disease is now one of them.”

Dr. Ding Jie from the National Health Committee called on more cities to improve their health systems. “Only when the government sets up health care policies can patients be protected,” she said.

Meanwhile, she attached great importance to the professional knowledge of doctors. 

“Doctors are facing challenges diagnosing rare diseases due to complicated clinically relevant features,” Ding explained. Research into China's rare diseases in 2018 showed that as many as 33.3 percent of doctors had heard of some rare diseases, but didn't know any detailed information.

The first official list of rare diseases in China come out in May.