13 January 2019 - A one-time treatment for a devastating rare disease could be paid for with an instalment plan as soon as this summer in Massachusetts.
In recent years, no treatments were even available for the rare, devastating disease known as spinal muscular atrophy.
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, organisers hope that it could prove to be a viable model for the entire US.
Novartis’s AveXis unit, which makes the gene therapy, Zolgensma, and has suggested a price tag of up to $US5 million could be appropriate, is in talks to participate. Business Insider is the first to report both the plan and interest from Novartis’s AveXis.