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.

  • You999
    8·
    6 months ago

    Except Zolgensma’s R&D was funded through the NiH. The only reason why it costs millions per dose is because Novartis bought AveXis for 8.7 billion solely to acquire the rights to Zolgensma.

    • barsoap@lemm.ee
      1·
      6 months ago

      [citation needed]?

      Wikipedia mentions that it’s based on research from the Institut de Myologie, France, nothing about the NiH.

      Also I already made the whole capitalism angle an aside. Plenty of people are talking about it, meaning I don’t need to talk about it. One-dose cures for rare diseases are more expensive per dose than multi-dose treatments for common diseases under any system, that’s what I wanted to say.

      I get that y’all yanks hate your medical-industrial complex, and you’re right to, but that doesn’t mean that everything is expensive just because some suit rolled some dice.

        • barsoap@lemm.ee
          2·
          6 months ago

          “benefited from comparative studies on patients with spinal muscular atrophy”, that’s not “funded the R&D” but “NiH did studies and AveXis read them”. If it was more than that they wouldn’t use that kind of weasel language that only implies, but doesn’t say, things. The rest is approval fast-track which saved AveXis money, but didn’t cost the tax payer a dime.

          I’m not saying that they’re not overcharging – of course they are, they definitely are, especially after getting bought up by Novartis and given the US’s inability to actually bargain with drug manufacturers. But this narrative of “taxpayers fronted all the costs” (“R&D was funded through the NiH”, implying all of it) is BS.

          And even then, and I fucking knew what I was doing when I said “I don’t wanna talk about the capitalism aspect”, the drug would’ve still been more expensive to develop, per dose, if it was fully state-funded.

          Also I wouldn’t be surprised if the French research that led to the whole gene therapy stuff in general was 100x more expensive than those NiH comparative studies. It’s foundational research companies never do that kind of stuff. Probably at least 10-20 PhDs in that overall, funded by the French taxpayer.