Campaign focuses on caring for spinal muscular atrophy patients

A program supporting mothers of young patients suffering from spinal muscular atrophy (SMA) was launched amid the ongoing China International Import Expo (CIIE) in Shanghai on Monday.

The program focuses on efforts supporting those beyond the patients and services along the process of screening, diagnosing and treatment and care.

SMA is one of the rare diseases of the neurological system and can cause disability or death. China witnesses about 1,000 newborns with the disease per year. The disease causes malfunctions of the bone, respiratory and other systems and eventually respiratory failure within one year after birth.

Other SMA patients are diagnosed during their teen years or adulthood and have already suffered other neurological or muscle diseases.

Drugs for rare diseases are becoming more available to patients in China as the nation is supporting more breakthrough drugs to provide patients more options for treatments. Alongside the drugs, efforts and support are needed to bring awareness to hospitalization and improve at-home care, according to Wang Yi, professor and chief physician of the neurology department of the Pediatric Hospital Affiliated to Fudan University.

Xing Huanping, who is in charge of Meier Advocacy and Support Center for SMA based in Beijing, said the center pledges more support for patient care, SMA screening and public education and called for more help from the health circle.

Roche Pharma China has been committed to accelerating rare disease drug introduction to China, according to Chen Shaofeng, who is in charge of specific medicine customer service in China. Chen said Roche is going to further tap into the area of neurological diseases.