The price of Zolgensma vs. the price of a child's life

(CHRIS SHINN)

Tina Anderson’s son, Malachi, was born with the most severe form of spinal muscular atrophy.

“You can take him home, love him, take lots of pictures,” she remembers doctors saying, “but he won’t make it to his first birthday.”

But thanks to Zolgensma, the $2.1 million gene therapy that was recently approved to treat this devastating disease, Malachi will soon celebrate his fourth birthday. Despite the controversy around the therapy’s stunningly high cost, Anderson is grateful that it’s an option available for families like her own.

“To me, you cannot put a price on your child’s life,” Anderson, who got her son into a clinical trial for the treatment, told STAT’s Damian Garde. “If tomorrow we were told to pay back everything, we would. We would figure it out. Because our son is now alive and well.”