National initiative to raise awareness of rare disease launched

A national initiative was launched on Tuesday to further raise society's awareness of spinal muscular atrophy, also known as SMA, a rare genetic disorder that affects muscle control, and promote early diagnosis and treatment.

The initiative, created by the China Primary Healthcare Foundation, the China Alliance for Rare Diseases, Beijing-based Mei'er Advocacy and Support Center for SMA, and Massachusetts-based biotech company Biogen, also calls on various sectors of the society to help improve accessibility of treatment for the patients.

Called "SMA Healthy China Initiative 2021", the initiative will rely on the hospital network to carry out SMA patient education and provide rehabilitation and nursing support for families of SMA patients. Publicity activities around the world will also be held to raise awareness of the disease on SMA Care Day and other disease awareness days.

According to experts, there are between 30,000 and 50,000 people in China suffering from SMA.

Li Linkang, chief executive director of the China Alliance for Rare Diseases, said that the first therapy for the disease was approved in China in February 2019. Thirty nine hospitals in 23 cities in the country have since formed a national cooperation network for SMA diagnosis and treatment.

"But more joint efforts from the government, the medical circle, philanthropical organizations, patient communities, and enterprises must be made to explore a sustainable path with Chinese characteristics to solve the problem of improving treatment accessibility," he said.

Hu Ningning, vice-chairwoman of the China Primary Healthcare Foundation, said that the foundation had as of December 2020 helped more than 120 patients access this treatment since it launched an SMA patient assistance program in May 2019.

A report published by Mei'er in August shows that it took an average of 6.6 months for Type-1 SMA - the most severe condition - patients born before 2016 to be diagnosed after showing symptoms. Due to this new assistance program, the duration required for those born on and after 2016 has dropped to 3.5 months.