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    • #28576
      Lupa F

      There’s the new article on the front page about Spinraza adherence. There’s an interesting part at the end. It talks about the medical costs between patients who stayed on Spinraza versus those who stopped. Here’s the relevant bit: “Non-adherent patients with SMA type 2 had a mean cost of $146,830 PPPY, compared with $51,937 for those who adhered to therapy. For patients with SMA type 3, these costs were $105,657 PPPY for the non-adherent group and $74,647 PPPY for the adherent group.” These costs do not include Spinraza.

      Given that Spinraza costs more than $125,000 per dose, these figures show that Spinraza isn’t remotely worth its cost. Is this going to make insurance and Medicare/Medicaid reevaluate it?

    • #28578
      Dennis Turner

      I thought the same, but I pray not.  For me, Spinraza has meant that my loss of independence has slowed instead of increasing. It would be a very great personal loss to need to stop it.

      • #28592
        Lupa F

        I know Spinraza works for me, so it would absolutely suck if I had to stop treatment. But reading the paper it’s absolutely clear that Biogen was full of shit when they claimed the price was necessary because of the cost savings it would provide the healthcare system. Patients that aren’t on Spinraza don’t reach $375,ooo a year in medical costs so there’s no way being on it could save any money.

        The paper shows more detailed data than what the summary covered and it’s even worse for Spinraza. For types 1 and 3, the median cost per patient is higher for patients who continued Spinraza than for those that discontinued it. If you look just at those numbers it means Spinraza is worse for patients than not using it at all!

        But the study is kind of a mess because they did no statistical analysis and for many of the numbers the standard deviation is bigger than the mean. So a few outliers with extremely high medical costs  are throwing the numbers way off. Most of the median numbers (50% above/50% below) are significantly smaller than the means.


    • #28579
      DeAnn R

      Valid concern. I feel like quality of life is a big factor too. It hopefully would be difficult to deny a medication that is shown to not only reduce cost when adhered to but also improve quality of life. It’s not our fault the price of the drug is astronomical. Maybe it’ll make the pharmaceutical company reevaluate the cost of the drug.

    • #28584
      Micaela MacDougall

      Hi Lupa – I would guess that it’s a little more complicated than that.  If I remember correctly, non-adherence was defined as more than two weeks delay in getting the next dose in Spinraza – so depending on your schedule, it would be possible to be non-adherent, but still receive and pay for the exact same number of Spinraza doses in a year as someone who was adherent.  Given that the window for non-adherence is so small, I don’t think you can make an equivalence between the cost of a Spinraza dose and the annual cost of non-adherence.  If someone was so non-adherent that they actually missed (not just delayed) one or more doses, the numbers above would have to be recalculated, and I would guess that the cost of that level of non-adherence would be significantly larger.  So, no, I don’t think this study is enough for insurance to start reevaluating the cost/benefit analysis.

      • #28591
        Lupa F

        In the full paper they also tracked how many stopped Spinraza altogether and most of the non-adherent patients fell into this group. Very few who were non-adherent continued treatment so that wouldn’t change the numbers much.

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