A lottery like no other offers up a cutting-edge medicine — with lives on the line

“If it is really not possible to help all who are in need of help, then a lottery with priority to patients who are worst off is not a bad approach — and definitely fairer than other things a company could do,” said Holly Fernandez Lynch, a bioethicist at University of Pennsylvania’s Perelman School of Medicine. “The key is to first do everything possible to minimize the need for a lottery at all — and it’s not obvious to me that Novartis has done that here.”

The fact that the lottery created a situation in which there are, for lack of better descriptors, winners and losers also left some people uneasy.

“You can’t do anything to improve your chances,” said Genevieve Kanter, also a bioethicist at Penn. “But it does become a zero-sum game, which is what bothers some people about the mechanism, even if at the end of the day, more kids get treated than in the alternate scenario where there’s no lottery.

“It’s the price we have to pay to have some kids treated.”