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A Dilemma for Governments: The best way to Pay for Million-Dollar Therapies

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While there are greater than six million people worldwide with sickle cell, most of whom living in sub-Saharan Africa, the initial launches are expected to deal with tens of 1000’s of patients in america and Europe.

Record-setting price tags for gene therapies have largely escaped the criticism that has followed other industry pricing decisions. The sentiment reflects just how powerful most of the gene therapies are — doctors sometimes go so far as to call them cures — and their unique position as one-time treatments. Such a therapy has only one probability to earn money, and in some cases can replace chronic treatments that might otherwise be given for the remaining of a patient’s life at a much higher cumulative cost.

Still, for middle-income countries, “if advantages of those therapies are immediate by way of health however the potential savings occur in the longer term, that math may not work for them,” said Rena Conti, a health economist on the Questrom School of Business at Boston University.

Tay Salimullah, a Novartis executive, said the corporate works closely with governments and health plans considering whether to cover Zolgensma, in some cases allowing them to opened up their payments over time, like a mortgage, or offering a price cut if the treatment doesn’t work.

In Brazil, the agreement with Novartis calls for the federal government to separate payments for every treatment into five equal parts over 4 years. If a patient dies, have to be permanently ventilated or is unable to take care of certain motor functions two years after receiving Zolgensma, the federal government won’t be required to make the next payments.

Until six years ago, there have been no approved treatments for S.M.A., which affects about one in 10,000 newborns. Infants with probably the most severe type of the disorder were sent home and their families were told to organize for them to die.

Zolgensma and two other drugs approved since 2016 have opened up once unimaginable possibilities for S.M.A. patients. “I’m telling parents to maintain putting money of their college fund because this kid has a future,” said Dr. Thomas Crawford, who treats S.M.A. patients at Johns Hopkins Medicine.

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