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.

  • NotMyOldRedditName@lemmy.world
    2·
    6 months ago

    These things cost billions to create. Those billions are often (or should be anyway) spread out over the millions of people who can use the drug.

    When a drug is a one time cure, for something that is rare, it becomes incredibly difficult to make any money back on that unless the cost is incedibly high, or it’s government subsidized.

    That’s why a lot of things we probably could cure aren’t cured yet. It just doesn’t make sense financially to do it. And if they do do it, people like you get angry at them.

    This is much less of a problem in a public single payer system, but even then some of those systems don’t cover these kinds of treatments.

      • NotMyOldRedditName@lemmy.world
        1·
        6 months ago

        Okay, so this drug costs 1 million instead of 2 million now assuming they didn’t offer any subsidy because of that, which they probably didn’t.

        Edit: just to go further on the topic - if we don’t want crazy prices on these types of cures (low / single use, high research cost) they essentially need to be completely funded by the government with a clause on pricing, or simply owned by the government. But you’re going to have a hard time convincing people to vote for you when you spend 2 billion hoping for a low use cure vs working on something more widespread and impactful, even if it’s the right thing to do.

        • nickwitha_k (he/him)@lemmy.sdf.org
          2·
          6 months ago

          It would be easier if it wasn’t illegal for Federal public institutions to hold the intellectual property. As it is, even if the research is 100% tax-payer funded, and conducted exclusively through public institutions, a private company still gets to take ownership of the patent and exclusivity rights. It’s pretty disgusting.

          Pretty much this meme: