Ampyra Not Covered By Medicare?

    • October 18, 2012 at 7:58 pm

      Medicare has denied my prescription for Ampyra (Dalfampridine) because my diagnosis codes (CIDP, GBS) are not approved for use.  Medicare will authorize the medicinne for a diagnosis of MS, I do not have MS.  The drug is supposed to improve nerve conduction to help promote regrowth of the myelin.  This would suggest it could have benefits for treatment of CIDP and i want to try it.  Without Medicare/insurance coverage a 30 day supply is about $1400.

      Does anyone have experience using this drug for treatment of GBS/CIDP?

      Has anyone had a denial from Medicare or insurance companies due to the diagnosis code not being covered?

      Has anyone been successful in getting an approval from Medicare or insurance for Ampyra?

      Any other info or advice would be appreciated.

      Thank you,


    • GH
      October 19, 2012 at 9:04 pm

      It’s not surprising that it isn’t covered, because it is intended to treat MS. Your prescription seems to be off-label. Here is an article from Pharmacy and Therapeutics on the drug:

      There’s nothing in there about promote regrowth of the myelin.” What was the basis for prescribing it? Is there some study on its use for GBS or CIDP?

    • October 24, 2012 at 4:08 am

      Thank you for the info!  The article that had alerted me to this new possible treatment was published in the Fall/Winter GBS/CIDP newsletter in 2011.  The article: Treatment of the Residual Effects of GBS with Dalfampridine. Was written By: Gareth J Parry, MD – Professor of Neurology. University of Minnisota – Member, GBS/CIDP Medical Advisory Board.

      I have a copy of the article and attached it as a jpg image.  I hope it came out OK.  My Neurologist at Cedars Sinai prescribed Ampyra to see if it might help my CIDP.  He did some research on the drug and has experience using it with MS patients.

    • October 24, 2012 at 4:16 am

      Well, attaching an image didn’t work.  But this link does:

    • GH
      October 24, 2012 at 5:25 am

      That’s interesting, but it makes it clear that its use to treat CIDP is speculative for now. Parry is, of course, one of the experts in GBS and CIDP, being the co-author (with Steinberg) of the popular book on the subject. But that’s not enough to expect Medicare to pay for it.

    • Anonymous
      October 24, 2012 at 2:30 pm

      I used it and it helped my cipd … it is nicknamed “the walking drug” for MS patients.  My insurance (BC/BS) paid for it.  Before going to Chicago for the SCT treatment, I canceled the prescription as it came by mail.  I was gone for 3 months and it came anyway so I have a boatload on hand that I do not need and cannot return.  Does anyone know of a way to donate it?