Newborn twins fight rare disease, family says it’ll cost $4.2 million to save their lives
www.wbtv.com
New parents in Kansas City are fighting to save the lives of their newborn twins. They said the boys have a rare genetic disease that will cost the family millions of dollars to treat.

america is so fucking based man

in any proper country that company at least gets forced to pay by the government then ordered to shut down forever due to wanton cruelty. all the employees get generous severance except whoever made that call. depending upon your view of carceral punishment there are a few ways to go with that guy.

  • Jarlsburg@lemmy.world
    1·
    7 months ago

    I commented this elsewhere, but to answer your question,

    Zolgemsma is a modified version of adeno associated virus and has to be grown under specific conditions. It costs $500k-$1m per production. It’s also a one time injection that functionally cures the person of the disease. There are a couple other options but for comparison, the other therapeutic is Spinraza which is an intermittent intrathecal infusion which is $805,000 for the first year of therapy and $380,000 per year thereafter for the rest of your life.

    SMA type I also is 100% fatal by year 2-3 and the baby dies without being able to even lift their head. It’s a terrible prognosis.

    To be clear, I think we should bear the actual costs of research, development, and manufacture as a society and not profiteer off the sick, but there are some contributory reasons for the price.