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    • #21661
      Dagmar Munn

      Are you feeling “sticker shock” when paying for your medication at the pharmacy? I know I have.

      Seems “Prices Increased Faster Than Inflation for Half of all Drugs Covered by Medicare in 2020

      This is not good, especially for those of us with rare diseases like ALS and who have to depend on limited approved treatments such as Riluzole (Rilutek) and Radicava.

      Are you taking Riluzole or Radicava? If you are comfortable sharing with our members how much you are paying each month, it would help us discuss this important issue.

    • #21663
      Dagmar Munn

      We’ve been quoted $1,600.00 for Riluzole (30-days, 50mg, 2x/day) without health insurance or a drug plan. $311.00 for the same but with health insurance.

    • #21664

      Here is paragraph from ALS worldwide from Feb 2015.

      “The branded Rilutek is expensive. However, the generic, riluzole, has a retail price per capsule without insurance of $3/pill. Insurance can bring this cost down significantly. Medicare and the VA cover riluzole, and the National Organization for Rare Diseases can help support the cost if needed”

      I think it disgusting that drugs apparently are priced on what people are willing to pay. I don’t take as both my clinic DR and university research Dr did not think would help me. I think cost for me with Medicare supplement plan would be about $600 a year after copays and deductible.

    • #21668

      I take a generic Riluzole and fortunately have “only” a $75-100 monthly copay.

      I also get Radicava infusions at home, which are not covered by my primary insurance which is Medicare, but my secondary insurance through my husband’s employer covers at 100% after my $1500 annual deductible.

      I do realize how fortunate I am to have such great insurance coverage and that not all pALS have that option.  There must be some who decide not to take the meds solely because of the cost.

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