SMA News Forums Forums Treatments and Research Spinraza (nusinersen) New Spinraza Study Testing Higher Dose

  • New Spinraza Study Testing Higher Dose

    Posted by deann-r on September 18, 2019 at 9:49 pm

    One question on my mind is why children and adults receive the same dose of Spinraza.  Apparently I’m not alone.  Here’s an article that details a new study testing Spinraza at a higher dose. One question I have is if the higher dose would come with a higher price-tag. Of course we’ll have to wait and see! What are your thoughts on this news?

    lupa-f replied 4 years, 8 months ago 2 Members · 1 Reply
  • 1 Reply
  • lupa-f

    Member
    September 19, 2019 at 3:08 pm

    The main nerves that get affected by SMA are there from birth so that’s one reason it possibly works well no matter what size you are. I wouldn’t mind trying a higher dose though to see if that feeling that it’s sort of wearing off as the next dose is coming up might go away even if it doesn’t do anything better the rest of the time.

    But I really hope it’s not a scheme to jack up the price to try to make up any revenue lost to Zolgensma since actually making the drug is such a tiny part of its cost. The cost was always said to be based on its impact to the healthcare system and little to do with manufacturing or administering it.

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