Jwheel86 Posted January 17, 2020 Share Posted January 17, 2020 https://www.theguardian.com/society/2019/dec/20/lottery-prize-zolgensma-drug-zolgensma-children-muscle-wasting-disease Quote “SMA is still the biggest killer of children under two. Imagine parents putting a child in a draw every two weeks to see if their life can be saved. It will have a huge emotional impact,” she said. “As a mother of a child with SMA, I think it could have been done much better.” The drug, Zolgensma, was developed by AveXis, which is owned by Novartis, one of the wealthiest drug companies in the world. It is designed to add a functional copy of a gene that is missing in babies born with SMA. It is not a cure. Huge debate about this drug in the SMA community over the price and complete unknown of long term effectiveness, especially given the high cost of the alternative therapies. Quote Link to comment Share on other sites More sharing options...
Chadatog Posted January 17, 2020 Share Posted January 17, 2020 They are missing out not making a reality show out of this, think of the feels from the parents who don't get the treatment for their kids 😬 Quote Link to comment Share on other sites More sharing options...
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