The Meier Advocacy & Support Center for Spinal Muscular Atrophy (SMA) and the Shenzhen Research Institute of the Chinese University of Hong Kong jointly released a report titled “Research on the Quality of Life of Chinese SMA Patients.” The report indicates that among patients treated with Biogen’s Spinraza (nusinersen), 76.4% started the treatment only after the drug was included in the National Reimbursement Drug List (NRDL).<\/p>\n\n\n\n
Report Details<\/strong> Medical Expenses<\/strong>
The report’s follow-up research is based on data from the Meier SMA patient registration database, with a total of 1,175 valid questionnaires collected. Among them, 214 patients used Spinraza before NRDL coverage, 694 patients used it after coverage, 46 patients used Roche’s Evrysdi (risdiplam, not covered by NRDL), and 164 patients never used any medication.<\/p>\n\n\n\n
In terms of medical expenses, the median personal out-of-pocket payments in the first three patient groups were RMB9,292 (USD1,367), RMB5,350 (USD787), and RMB20,097 (USD2,958), respectively. These amounts account for 92.9%, 76.4%, and 182.7% of the average monthly household income. The report points out that after NRDL inclusion, the number of patients starting Spinraza increased significantly. The disease burden is expected to continue decreasing as the first year of treatment ends.<\/p>\n\n\n\n