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