FIRST AIRED: May 24, 2019

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a new treatment is approved for sufferers of a rare and deadly infant muscle disorder but it comes with a record price tag more than two point one million dollars for a one time dose US regulators on Friday gave Swiss drugmaker Novartis approval for gene therapy drugs sold Jenzabar to treat childhood spinal muscular atrophy a leading genetic cause of death in infants Novartis told Reuters health the pharmaceutical corresponded Caroline Huber the price is right Novartis says that it is worth two point one two five million dollars because right now out there's treatments on the market that cost almost five hundred thousand dollars a year already in this first trial for children who would who have gotten it the results have been pretty I'm pretty amazing really everybody agrees that the children who had been predicted not to be able to to Walker even swallower even lift their heads can move around some of them can run they can eat on their own so the the compared to to what the disease is it it's been somewhat miraculous they say the record price tag is sure to raise eyebrows among politicians and consumer groups already upset over sky high costs for prescription drugs already I think we're starting to hear a little bit on on Twitter and we've got a bunch of emails from patient advocate saying this is just too high of a price we'll see I mean the company has said that insurers that pairs the big ones are are ready to pay for this but one independent group the institute for clinical and economic review after seeing the price was too excessive changed its mind Friday seemingly convinced by data on the drugs life saving results Novartis is not alone in treating the disease Biogen has a drug which requires multiple doses starting at seven hundred and fifty thousand dollars the first year and three hundred and seventy five thousand dollars each year thereafter and rival Roche is working on his , own treatment which it plans to seek approval for later this year no word yet on how much that drug will cost