Medical coverage for injections sign of hope for those with SMA

The inclusion of Nusinersen sodium injections in China's medical insurance category has significantly improved the lives of people with SMA, a rare neuro-muscular disease that seriously impacts their quality of life, but there is still a long way to go before they can be admitted to schools and participate in social activities, a recent report revealed.

The report on research into the quality of life of those with SMA released by Meier Advocacy and Support Center for Spinal Muscular Atrophy, the first non-profit organization of its kind in China and supported by the China Alliance for Rare Diseases, received 1,175 valid responses from people with SMA.

There has been significant growth in the number of people with SMA receiving Nusinersen sodium injections following the medical insurance inclusion last year, bringing hope to their families, the report found.

In total, 76.4 percent of respondents said they began getting the injections after the inclusion, which have significantly improved their sense of independence and quality of life.

However, there is still a long way to go as only 31.3 percent of respondents said they seek regular medical treatment.

"Muscular weakness in children with SMA threatens their respiratory, digestive, skeletal and other systems, which require the intervention of doctors from different departments in different stages," said Wang Yi, a doctor with Children's Hospital of Fudan University's neurology department. "Rehabilitation training is of great significance as well."

Fewer than 50 percent of those with SMA between the ages of 5 and 17 go to school, and only 34 percent go to primary school or kindergarten.

Meanwhile, social organizations, individuals and biomedicine companies were honored with China's first public welfare award in a rare disease field over the weekend.

The Chinese Organization for Scleroderma, a social organization dedicated to the care of people with scleroderma, won the community contribution award, while French pharmaceutical company, Sanofi, received the rare disease industry contribution award – the Golden Snail Award – which was awarded for the second time and is jointly granted by the Chinese Organization for Rare Disorders and Sina Weibo and supported by the One Foundation and MKTforGOOD, a charity platform.

The Chinese Organization for Scleroderma provides medical-treatment assistance to people with scleroderma. It also promotes awareness of the disease and those who suffer from it to eliminate prejudice and misunderstanding and create an environment of respect.

Solitude and helplessness are the most common feelings of those with rare diseases and their families, and communities that are understanding can help relieve their psychological and physical plights, the award's organizers said.

In total, nine individuals and organizations won awards.