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This topic has 4 replies, 3 voices, and was last updated 1 year, 9 months ago by Kevin Schaefer.

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    • #18767
      Kevin Schaefer
      Keymaster

      Hey everyone, here are some updates regarding Zolgensma’s clinical trial phase.

      First article: https://smanewstoday.com/2019/05/08/aanam-zolgensma-continues-to-extend-survival-in-sma-type-1-patients-several-years-after-dosing/.

      Second article: https://smanewstoday.com/2019/05/08/aanam-zolgensma-superior-to-spinraza-in-extending-life-enabling-achievement-of-motor-milestones-in-sma-type-1-patients-trials-show/.

      These are just the scientific results right now. More information will be available in the coming days, especially with the expected FDA-approval of this drug.

      Do you have any thoughts on these articles?

    • #18781
      DeAnn R
      Keymaster

      It only makes sense to me that Zolgensma is showing to be more effective than Spinraza as it targets the root cause of SMA. It’s great, in my opinion, that for type 1 infants (at least for the near future) there will be options. Inevitably the drug won’t work for everyone, so at least there will be another choice. Of course the cost of each treatment is also an aspect that may be prohibitive to receiving treatment that these articles didn’t touch on.

    • #18784
      Kelly Miller
      Participant

      DeAnn & Kevin, do y’all think it will be harder to get financially than Spinraza has been? I mean, I know it’s more expensive initially, but is only one injection instead of ongoing. I really hope they approve it for older people because that’s the one I want. I just can’t do Spinraza on an ongoing period of time.

      • #18798
        DeAnn R
        Keymaster

        Good question Kelly. At this point I think it’s anyone’s guess as to how the high price tag will be received. Thought I heard somewhere, just not sure where, that the drug company may be working with insurance companies to be able to pay over a period of time. Guessing the trouble there would be if the insurance carrier would change before it was fully paid. Then there’s the whole buy & bill issue for those of us on Medicare. I’m thinking institutions would be much more hesitant to take on that risk. It will be something to keep an eye on for sure.

      • #18820
        Kevin Schaefer
        Keymaster

        I agree with DeAnn. Only time will tell. Especially since the drug is only available for Type I infants initially, it’ll be a while before we have any concrete answers for adults. But I think anything is fair game at this point.

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