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This topic has 4 replies, 5 voices, and was last updated 2 years, 4 months ago by Adnan Hafizovic.

  • Author
    • #14575
      Kevin Schaefer

      In his column this week, Ryan wrote about why he’s decided to hold off on Spinraza for now, and is instead looking into other treatments. You can read it here: https://smanewstoday.com/2018/10/11/sma-research-disease-modifying-therapies-spinraza-avxs-101/?amp.

      I know others in similar situations. I’ve been fortunate with my Spinraza treatments, but I know many other adults with SMA who are still struggling to acquire this drug.

      What have your experiences been?

    • #14608
      Ryan Berhar

      Thanks for sharing this man!

    • #14611
      DeAnn R

      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.

      • #14741
        David Z

        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.

    • #14808
      Adnan Hafizovic

      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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