SMA News Forums Forums Treatments and Research Spinraza (nusinersen) Spinraza Setbacks and Looking at Other Therapies

  • ryan-berhar-2

    October 13, 2018 at 12:19 am

    Thanks for sharing this man!

  • deann-r

    October 13, 2018 at 8:44 am

    Although I completely respect and support your decision Ryan, my heart still breaks because it seems like you were so close.  I do think your story mirrors many out there.  It really shouldn’t be as difficult as it has been for you to access this treatment.  My fear is that now that there’s a treatment available maybe the urgency for other treatments to come to market just isn’t there.  Hopefully I’m wrong and the market will soon be flooded with treatment options.

    • david-z

      October 22, 2018 at 1:32 am

      I’m looking forward to new treatments that are easier and/or less frequent to administer. I’m hopeful that there’s continued urgency due to: (1) a clear market evidenced by Biogen’s success, but even more so (2) regulators & payers are likely desperate for competition to combat Spinraza’s notoriously huge price tag and infrastructure necessary for administration.

  • adnan-hafizovic

    October 23, 2018 at 10:46 am

    Ryan it your decision ,but reality is that spinraza didn t show so much improvement at older patients,so maybe is good to wait some new cure.

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