• Barriers to Spinraza

    Posted by deann-r on March 5, 2020 at 7:00 am

    On my quest for Spinraza the biggest barrier besides insurance red tape was my spinal fusion.  Where I go they use the Transforaminal approach to access my spine.  I know other methods exist, but this is working for me.  If you follow Squirmy & Grubs you’ll know Shane Burcaw is having to switch clinics.  He gets his injections in his neck.  The new clinic may not be able to do it that way. I’m sure they’ll get it sorted out, but I don’t know what I would do if I was denied after already having access to it.

    Were you denied treatment using Spinraza because of your spinal fusion or other medical conditions? If so, would you be willing to share what happened to you with our other members?

    halsey-blocher replied 4 years, 1 month ago 2 Members · 1 Reply
  • 1 Reply
  • halsey-blocher

    March 5, 2020 at 9:42 pm

    My spinal fusion combined with the severe curvature of my spine ended up completely preventing me from receiving Spinraza. This is the column I wrote about it a while back for anyone that wants to give it a read. I wasn’t willing to try some of the riskier approaches like this neck method that Shane uses. I ended up deciding it would be best to wait and see what other treatments would become available. I’m very excited about the possibility of Risdiplam. I hope everything goes smoothly for Shane.

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