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An expensive new medication is finally available for her rare disease — but she’s been fighting for two years to get it

When Annie Wilson was just six months old, she was diagnosed with spinal muscular atrophy, a rare disease that causes progressive muscle weakness and impaired movement — and told she wouldn’t live past age 3.

More than 30 years later, the first therapy for her condition was approved in Biogen Inc.’s BIIB, +0.06% and Ionis Pharmaceuticals Inc.’s IONS, +2.95% Spinraza.

Spinraza has attracted attention for being innovative, but so has its high price tag: up to $750,000 in the first year, and $375,000 a year afterwards.

By the time of approval, Wilson was having trouble breathing, talking and even driving her wheelchair, and was excited by the prospect of the new treatment.

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