Snapshots of 2024

Hope on a new step

Hu Qingning Nanjing, Jiangsu

Born with spinal muscular atrophy (SMA), a rare disease that causes progressive muscle degeneration and weakness, I have never been able to walk.

Yet, that did not stop me from participating in the opening ceremony of my school's spring sports meeting, where I fully immersed myself in the exciting atmosphere — an experience I had never imagined.

Since medications for SMA patients were added to China's medical insurance system in 2021, the cost of a single injection of Spinraza (nusinersen) has dropped from 700,000 yuan ($95,906.85) to 33,000 yuan. This significant price reduction has ensured a stable supply of my medication, bringing tremendous hope to my family.

This year, I learned that even more treatments for people with rare diseases have been included in the system, further brightening the outlook for families like mine.