Inside STAT: Lottery like no other offers a cutting-edge medicine — with lives on the line

NOEL ÖLYÜS, WHO HAS BEEN ENTERED INTO THE NOVARTIS LOTTERY, WITH HIS FAMILY. (COURTESY HILDA FODOR)

There are lotteries for cash prizes and visas, but a new kind of lottery hopes to provide a lifesaving drug to those who can’t yet access it. Novartis’ gene therapy drug Zolgensma was approved in the U.S. last year for kids with spinal muscular atrophy, but the drug isn’t available in other parts of the world. The sticker price of $2.1 million and requirement that kids receive the drug before the age of 2 pose serious limitations even if families want to travel to the U.S. Novartis plans to give away 50 doses in the first half of the year, and the first drawing was earlier this week. Read more about the lottery and some of the families — like that of Romania’s Noel Ölyüs — who are hoping their name is picked from STAT’s Andrew Joseph and Ed Silverman here.