This New Treatment Could Save the Lives of Babies. But It Costs $2.1 Million

In exchange, Novartis is asking insurers to promise that they will cover the treatment and that they will quickly decide if a child qualifies. “We know that treating these kids quickly is really paramount,” Mr. Lennon said.

The payment plans will be administered through Accredo, the specialty pharmacy unit of Express Scripts, which is now owned by Cigna.

Dr. Steve Miller, the chief clinical officer of Cigna, said Accredo would collect payment for administering the arrangements with insurers, but declined to say how much, saying that each case would be different.

Cathryn Donaldson, a spokeswoman for America’s Health Insurance Plans, a trade group for insurers, said that while some arrangements — such as money-back guarantees — can be useful, they won’t solve the underlying problem, which is the high prices that the drug makers set.

And while treatments like Zolgensma are promising, she said in a statement, “the data collected on gene therapies is still relatively in its infancy, and they do not have the long-term evidence to confirm they are a lifetime cure.”

Because of the lifesaving nature of the treatment and because the disease is so rare, many insurers are likely to cover Zolgensma. But some experts worried about the cumulative impact should other drug makers follow Novartis’s lead. More than 60 gene therapies are expected on the market by 2024, according to EvaluatePharma.

“The drugs coming to market are going to be things that we will not want to walk away from,” said Dr. Steven D. Pearson, the president of the Institute for Clinical and Economic Review, an independent watchdog group.