Pharma helps foot bill for US$750,000 drug, but seeks personal medical info in return

Derwood,United States

KRISTEN Lasko cried tears of relief in late December when she read online that an experimental drug that could help her 3 1/2-year-old son, Max, had finally been approved. Ms Lasko and her husband, Jonathan, quickly pivoted to getting their cheerful, blonde boy access to the only approved medicine for a devastating, muscle-wasting disease. The drug, Spinraza, would carry a staggering price: US$750,000 for the first year.

Max's rare, life-threatening disease, spinal muscular atrophy, confined him to a wheelchair and robbed him of muscles he needs to smile and swallow. Spinraza, developed by the Massachusetts biotech company Biogen, had helped other children with the disease sit, stand or even walk.