Parents Fighting for Kids Spine Drug Eye New Data
Summary
For months, she couldn’t schedule a treatment date at Columbia University Medical Center/New York-Presbyterian Morgan Stanley Children’s Hospital, and for much of that time, she didn’t know why.Marotta is one of many parents who have been at wit’s end about the delays and difficulties accessing nusinersen, from Cambridge, MA-based Biogen (NASDAQ: BIIB), which the FDA approved in December.That’s why the SMA community of patients, their parents, other caregivers, and doctors—not to mention insurers—will be watching closely next week when Biogen presents new clinical data for nusinersen at the American Academy of Neurology’s annual meeting in Boston.Many SMA patients of all types have trouble breathing, sucking, and swallowing because of muscle weakness; the more severe cases are vulnerable to dangerous respiratory complications, like lung infections.Biogen CEO Michel Vounatsos said in January that with reimbursement challenges and capacity constraints at treatment centers, the company expected a “gradual uptake” of the drug in 2017.