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.

  • _number8_@lemmy.worldOPEnglish
    402·
    7 months ago

    In a statement, Chief Executive Officer Mike Poore told KCTV5:

    “Global pharmaceutical companies are putting profitability over affordability, making it impossible for employers like our hospital system to bear the financial burden of these exorbitant drug prices.

    In January 2024, Mosaic’s Health Care Trustees made the gut-wrenching decision not to cover expensive gene therapy used to treat ultra-rare diseases. Covering these treatments could cripple the financial viability of our health system, directly impacting our more than 4,000 employees and the approximately 270,000 people who rely on the health care we provide in small communities across four states.

    We are working hard to help find alternative solutions and financial resources to help in this case. Bottom line: Families should not have to focus on the astronomical costs imposed by drug companies, but instead should be able to focus on the care of their children in a medical crisis.”

    wow it’s almost like it’s a shitty fucking system and you’re very much a part of it.

    from his linkedin:

    “Mike is one of the finest men with whom I have ever worked. He relates well to and inspires his employees. He demands high quality while keeping his eye firmly on the bottom line. I would follow him anywhere!”

    • BastingChemina@slrpnk.net
      4·
      7 months ago

      For the persons interested the detailed cost vs clinical benefit for the Zolgensma done by the French national social security is public.

      The conclusion is that the clinical benefits of this treatment are substantial for type1&2 so it will be reimbursed by the national social security. For the patient with the type 3 disease other treatments will be favored.

      English summary