28 votes

US Medicaid will only pay for costly new sickle cell treatment if it works

10 comments

  1. [7]
    all_summer_beauty
    Link
    /meta /noise Should we change the title to match the article? My initial interpretation of the post title was that patients would have to pay for the treatment themselves if it didn't work, not...

    /meta /noise
    Should we change the title to match the article? My initial interpretation of the post title was that patients would have to pay for the treatment themselves if it didn't work, not that the drug companies would have to return the money they received from Medicaid. The article title is still a little unclear but I do think it's better.

    20 votes
    1. [5]
      DefinitelyNotAFae
      Link Parent
      Medicaid will cover new sickle cell treatment but drug companies will have to reimburse the government if it doesn't work Maybe?

      Medicaid will cover new sickle cell treatment but drug companies will have to reimburse the government if it doesn't work

      Maybe?

      7 votes
      1. [2]
        all_summer_beauty
        Link Parent
        Maybe "Drug companies must reimburse Medicaid if new sickle-cell therapy is ineffective"?

        Maybe "Drug companies must reimburse Medicaid if new sickle-cell therapy is ineffective"?

        4 votes
        1. DefinitelyNotAFae
          Link Parent
          Kind of, it implies they're covering it which is honestly the big news, but it doesn't really mention it. This is a HUGE step ahead for sickle cell treatment. Idk at this point

          Kind of, it implies they're covering it which is honestly the big news, but it doesn't really mention it. This is a HUGE step ahead for sickle cell treatment.

          Idk at this point

          2 votes
      2. [2]
        sparksbet
        Link Parent
        Oh wow I misunderstood the title exactly how all_summer_beauty did, this is way better news than I thought it was if this is your title suggestion!

        Oh wow I misunderstood the title exactly how all_summer_beauty did, this is way better news than I thought it was if this is your title suggestion!

        2 votes
        1. DefinitelyNotAFae
          Link Parent
          It is! Medicaid will pay for treatment, the pharma companies have to reimburse Medicaid if it's unsuccessful (basically if Medicaid has to go back to paying for the other treatments it sounds...

          It is! Medicaid will pay for treatment, the pharma companies have to reimburse Medicaid if it's unsuccessful (basically if Medicaid has to go back to paying for the other treatments it sounds like, or do a second round of the expensive one.)

          It's excellent for patients.

          4 votes
    2. skybrian
      Link Parent
      Yes, it's easily misread. The orignal headline doesn't seem better? But I'm not thinking of a good way to rewrite it offhand.

      Yes, it's easily misread. The orignal headline doesn't seem better? But I'm not thinking of a good way to rewrite it offhand.

      1 vote
  2. [2]
    ingannilo
    Link
    I agree about the title as I originally misunderstood it exactly as /u/all_summer_beauty suggests. But really I am excited to hear about this. I'd known about sicle cell, but until becoming...

    I agree about the title as I originally misunderstood it exactly as /u/all_summer_beauty suggests. But really I am excited to hear about this. I'd known about sicle cell, but until becoming friends with someone who has it, I had no idea how severe the pain of a flare up was. It's a life-ruining condition and straddles people with impossibly expensive and frequent ER visits.

    Then I learned about genetic treatments in development, but their projected costs seemed likely to be high. This is the first thing I've heard about maybe making these very effective treatments actually accessible to regular people. Amazing stuff.

    9 votes
    1. DefinitelyNotAFae
      Link Parent
      Yeah this is incredibly exciting from an accessibility of medicine perspective.

      Yeah this is incredibly exciting from an accessibility of medicine perspective.

      2 votes
  3. skybrian
    Link
    From the article: [...] [...] [...] [...] [...]

    From the article:

    Under the agreement, participating states will receive "discounts and rebates" from the drugmakers if the treatments don't work as promised, according to the Centers for Medicare & Medicaid Services, or CMS.

    That's a stark difference from how Medicaid and other health plans typically pay for drugs and therapies — the bill usually gets paid regardless of the treatments' benefits for patients. But CMS has not disclosed the full terms of the contract, including how much the drug companies will repay if the therapy doesn't work.

    [...]

    The treatment Cole received offers a potential cure for many of the 100,000 primarily Black Americans with sickle cell disease, which is estimated to shorten lifespans by more than two decades. But the treatment's cost presents a steep financial challenge for Medicaid, the joint state-federal government insurer for people with low incomes or disabilities. Medicaid covers roughly half of Americans with the condition.

    There are two gene therapies approved by the Food and Drug Administration on the market, one costing $2.2 million per patient and the other $3.1 million, with neither cost including the expense of the required long hospital stay.

    The CMS program is one of the rare health initiatives started under former President Joe Biden and continued during the Trump administration. The Biden administration signed the deal with the two manufacturers, Vertex Pharmaceuticals and Bluebird Bio, in December 2024, opening the door for states to join voluntarily.

    [...]

    The gene therapies, approved in December 2023 for people 12 or older with sickle cell disease, offer a chance to live without pain and complications, which can include strokes and organ damage, and avoid hospitalizations, emergency room visits, and other costly care. The Biden administration estimated that sickle cell care already costs the health system almost $3 billion a year.

    [...]

    Clinical trials for the gene therapies included fewer than 100 patients and followed them for only two years, leaving some state Medicaid officials eager for reassurance they were getting a good deal.

    [...]

    "What we care about is whether services actually improve health," said Djinge Lindsay, chief medical officer for the Maryland Department of Health, which runs the state's Medicaid program. Maryland is expected to begin accepting patients for the new sickle cell program this month.

    [...]

    Before gene therapy, the only potential cure for sickle cell patients was a bone marrow transplant — an option available only to those who could find a suitable donor, about 25% of patients, Ivy said. For others, lifelong management includes medications to reduce the disease's effects and manage pain, as well as blood transfusions.

    7 votes