Charity Scott, JD and professor of law at the Georgia State Catherine C. Henson School of Law, stood at the front of our medical school lecture hall with her arms stretched wide. “The welfare of a pregnant mother?” she said as she dipped one arm down, burdened by an invisible weight. “Or the welfare of an unborn child?”
The room is unassuming from the outside. It’s a tiny space not much larger than a storage closet tucked into an office in the school of public health. I do my usual clinic routine in reverse: notebook pulled out of pocket and white coat slipped off and left outside.
Why does a life-saving drug, for infants no less, carry such an astronomical price tag? Nusinersen falls into the category of ‘orphan drug,’ a drug designed for a disease so rare that it becomes fiscally unsustainable for corporate sponsors to invest and market the medication to the public.