• Dagmar

    March 17, 2022 at 1:21 pm

    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.

  • Bill

    March 17, 2022 at 2:23 pm

    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.

  • Lisa

    March 18, 2022 at 4:31 pm

    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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