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.

  • The Liver@lemm.ee
    33·
    1 year ago

    Why does the medicine cost 2.1 million in the first place? Is it just price inflation or it’s made of antimatter or something?

    • state_electrician@discuss.tchncs.deEnglish
      36·
      1 year ago

      From https://www.drugs.com/medical-answers/zolgensma-expensive-3552644/

      Zolgensma is a one-time-only gene therapy treatment for children aged less than two years with spinal muscular atrophy (SMA) that costs $2.1 million for the single treatment. The reason Zolgensma is so expensive is because that is the price Novartis has decided it is worth because it “dramatically transforms the lives of families affected by this devastating disease” and the claimed cost of bringing new drugs to market. But this price is not without controversy. For a start, the early development of Zolgensma was financed by the National Institutes of Health and several charities devoted to finding treatments for SMA, including many U.S. charities such as Sophia’s Cure, Cure SMA, Getty Owl Foundation, Fighting SMA, Jadon’s Hope Foundation, the Gwendolyn Strong Foundation, and Miracle for Madison. Many of these charities use donations by patient families and friends to subsidize research and clinical trials into new medicines for SMA. The CEO of Novartis, Vas Narasimhan, argues that gene therapies represent a medical breakthrough in the way that they offer hope of a cure for deadly genetic diseases with a single dose. In some cases, the alternative is a multi-dose treatment with incremental improvements. For example, an alternative to Zolgensma is Spinraza that is taken four times a year for life. The list price is $750,000 for the first year and then $350,000 per year after that, so about $4 million a decade. But how do they calculate the actual cost? Many companies use a value-based pricing model which calculates the cost based on how many years of life gained as well as taking into account the effectiveness of the drug. But this means putting a price on how much a life is worth, as well as ensuring the company makes a reasonable margin on their investment. Little is disclosed about the true cost of bringing a new drug to market, and Novartis didn’t develop Zolgensma but acquired it through the $8.7 billion purchase of US firm AveXis.

      So there is no tangible reason why it’s this expensive.

      • citrusface@lemmy.worldEnglish
        16·
        1 year ago

        “Because we said so and if you don’t want your kid to be a fucked up cripple loser you’ll fucking pay us, bitch.”

        • Novartis
    • You999@sh.itjust.works
      10·
      1 year ago

      Definitely not because Novartis is trying to recoup the 8.7 billion they spent on AveXis to acquire Zolgensma…

      • lolcatnip@reddthat.comEnglish
        33·
        1 year ago

        And denying it to people who desperately need it but don’t have that kind of money is helping them recoup the costs how?

        • You999@sh.itjust.works
          51·
          1 year ago

          Novartis isn’t the company who are denying it, that would be the insurance company Mosaic’s Health Care Trustees who aren’t covering it because it’s too expensive as stated in the article.

          Insurance companies will do anything possible to get out of paying for specialty tier medications from using ‘step therapy’ where before they will approve the medication your doctor approved you must first try and fail all the available medications starting from least expensive. Insurance companies typically also charge a presentage on speciality drugs for the copay as a deterrent from being prescribed those medications. Currently the advocacy side of some large disease-focused charities such as the arthritis foundation are trying to get congress to federally ban step therapy and set a cap for specialty tier drug copays like they have for the other drug tiers.

    • Alex@lemmy.world
      6·
      1 year ago

      Shit legislation with lack of price-negotiation through collective bargaining, is the main issue, costs land at the individual enduser in the end. They could’ve likely gotten half the money and save the twins but instead they’ll get none with that pricetag calculated from putting a number to the value of a human life - that makes most insurers pull out the fineprint and drop coverage overnight…