When Amber Freed heard in 2020 that a drug might help save her young child from a rare, progressive form of epilepsy, she was ecstatic. The news came just in time. Many children with the genetic mutation that causes her son’s illness begin experiencing debilitating seizures as 4-year-olds. Maxwell was 3.
Even better, the drug, Ravicti, was already approved by the Food and Drug Administration, so a doctor might be able to prescribe it right away. But there was a catch: At around $740,000 per year, Ravicti is one of the most expensive drugs in the world.