A revolutionary expensive drug that could treat a rare and devastating disease.

CREDIT: Cyrona Cell

In recent years, no treatments were even available for the rare, devastating disease known as Spinal Muscular Atrophy SMA.

A one-time treatment for a devastating rare disease could be paid for with an installment plan as soon as this summer in Massachusetts and Novartis’s AveXis unit is involved in the discussions.

Now, in a matter of months, an experimental one-time therapy designed to address the disease’s underlying genetic cause could treat the disorder. First though, someone has to pay for its potential multimillion-dollar pricetag.

A new effort is underway in Massachusetts to figure out how to do that. The idea is to let health insurers pay for the treatment over several years. If it succeeds, organizers hope that it could prove to be a viable model.

Novartis’s AveXis unit , which makes the gene therapy, Zolgensma , and has suggested a price tag of up to $5 million could be appropriate, is in talks to participate.

Americans have long paid for big-ticket items like houses and cars in a similar manner. But the plan if it is finalized would mark one of the first such approaches for a medicine. And Novartis would only receive each of its payment if the treatment is effective.

Organizations are coming together to discuss how the US health system will be able to pay for costly cures, and the Massachusetts initiative came out of that.

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