Inside STAT: For affected parents, there is no debate over a $2.1 million price tag for a drug

MALACHI ANDERSON AND HIS MOTHER, TINA, IN THEIR HOME. (CHRIS SHINN)

Experts are concerned that two spinal muscular atrophy treatments could set a costly precedent for the health care system. Novartis’ newly approved drug, Zolgensma, has a one-time cost of $2.1 million, and Biogen’s Spinraza, costs $375,000 a year. But many parents of kids with SMA feel differently. “To me, you cannot put a price on your child’s life,” says Tina Anderson, whose 3-year old son, Malachi, received the Novartis drug during a clinical trial. Although the Andersons didn’t have to pay the hefty price for the drug, “if tomorrow we were told to pay back everything, we would,” Anderson says. STAT’s Damian Garde has more here.

And in a new First Opinion for STAT, an SMA patient argues that critics of Zolgensma's $2 million price tag are missing the point.