January 17, 2017 News

Kaiser Health News: “Sky-High Prices For Orphan Drugs Slam American Families And Insurers”

January 17, 2017

Sarah Jane Tribble and Sydney Lupkin

Before Luke Whitbeck began taking a $300,000-a-year drug, the 2-year-old’s health was inexplicably failing.

A pale boy with enormous eyes, Luke frequently ran high fevers, tired easily and was skinny all over, except his belly stuck out like a bowling ball.

“What does your medicine do for you?” Luke’s mother, Meg, asked after his weekly drug treatment recently.

“Be so strong!” Luke said, wrapping his chubby fist around an afternoon cheese stick.

Luke now spends days playing with his big brother, thanks to what he calls his “superhero” medicine, a drug called Cerezyme, which has saved his life.


Patients For Affordable Drugs is the only independent national patient organization focused exclusively on achieving policy changes to lower the price of prescription drugs.