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    • #26004

      It’s been a while since I updated y’all. My insurance keeps denying my appeals because I’m “on full-time vent support” (I’m not, which is clearly stated in the letter) and because we didn’t include a way to monitor my progress on the medication, even though we did. I’m starting to get pretty frustrated.

      Do any of you have tips on getting your insurance to actually read the appeal letter (lol)?

    • #26013
      DeAnn R

      Do you have a PAL through Genentech?  They might be able to help.  I forget her name, but the one for Minnesota seems pretty nice.  They have a MySMA Support program.  You can find more info on the Evrysdi website

      Otherwise I would recommend calling your insurance.  I’m sure it would be a huge headache getting anywhere but might be worth a shot.  If insurance denies it I believe there’s a program to get the drug.  Sometimes if you’re already on the drug insurance is more apt to cover it.  The link I posted above has a financial support section as well.  Keep plugging away.  Seems like SMA is always a fight.

      • #26058

        I do! I spoke with them and it looks like I’m not eligible for financial assistance, so we’re going the insurance route – again. I’ll keep you updated!

    • #26069
      Mike Huddleston

      Hey Brianna –

      Sorry you’re dealing with this.  From my experience, not with Spinraza, but for the two power wheelchairs I’ve acquired through insurance, the appeal process is not effective.  They usually just drag it out with what seems like an objective to beat you (mentally) into submission.  And the longer they can deny or delay your request, the better it is for them financially.  That may sound cynical, but it is also reality.

      You should have an option with the denial for a peer to peer discussion.  For my insurance, United Health Care, this process MUST be initiated prior to an appeal and has a shorter window.  Like for me, my appeal could be submitted within 180 days.  The peer to peer window was 21.  This would be between your neurologist and the insurance company. And if you start the appeal process, it may void the peer to peer option.

      Check to see if this option is still available and I hope it works out for you.

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