• Sherry Campbell

    August 10, 2023 at 2:29 pm

    We have been fortunate that my husband is a veteran, and both of the VA locations that we deal with are very responsive and helpful.

    My only advice would be to request everything you currently need, and will need in the future, now! Specifically request scripts for ALS meds, and ask to be included in any appropriate trials. Contact the pharmaceuticals, your insurance, Synapticure, Team Gleason, the ALS Association, Live Like Lou, and any other organization that can help navigate the maze of ALS needs. Join support groups and pull from the experiences of others involved in this ALS journey. I learned more from the support groups than I did other sources. The people there are all in different stages of this journey, and they can give you tips on what worked for them.

  • Alan Larrivee

    August 10, 2023 at 2:37 pm

    <p style=”text-align: left;”>Not sure what to say. My doctor thought I would benefit from Nuedexta. Yeah it’s been pretty good but. Just got a letter from my pharmacy that my insurance will no longer cover that drug and after December 31, I’m welcome to pay for it myself. They said this move will save money.
    Profits before health. Yes, I am frustrated.</p>

    • Kim Belden

      August 10, 2023 at 2:58 pm

      Those of us who live alone and are not veterans can go through assets pretty fast.  There are PALS without children or without a spouse who must hire outside help early on.

      We’re the only developed country without universal healthcare.  If a PALS progresses very slow, they end up with substandard care in a nursing home.

      I already buy two of my meds from Canada and I have a good Part D and the best Medicare supplement money can buy.

      Many PALS don’t have the option of getting vented because they cannot afford 24/7 assistance.  Even those with large families are struggling to get by.

      I’ve met dozens of PALS who don’t have a CALS (primary family caregiver.). I think this fact gets overlooked.

      • Amanda

        August 14, 2023 at 7:23 am


        I understand your comment and it hits home hard.  I’m single, no children and  not a veteran.  So far I have been lucky and my insurance is covering some of the medical. I am having a difficult time taking care of some of my home responsibilities because I just can’t do the physical work.  I am looking into grants from the ALS association too.  I’m not far along in my progression, but this is one of my biggest fears as I progress.  It is hard to think about and it has made me look at our healthcare system differently!


    • Carol Whitehead

      August 12, 2023 at 11:45 am

      When my husband, Mike was prescribed the medication Nuedexta, our pharmacist applied for a grant through the HealthWell Foundation and he was approved due to his ALS diagnoses.

      Here is the information I have on the foundation:

      The HealthWell Foundation, P.O. Box 489, Buckeystown, MD 21717

      Hotline: 800-675-8416

      Fax: 800-282-7692

      Grant Assistance: [email protected]

      I hope this is helpful. Carol




  • Sandy

    August 10, 2023 at 2:52 pm

    My husband started Rilutek in April, added Radicava and then Relyvrio.  He is in the process now of trying to qualify for Qalsody.  His Medicare D has covered most of the hideous expense.  We qualified for a Healthwell grant for the co-pays.  After studying results, he decided to stop taking Relyvrio.

    The doctors office did all the processing, Paul just signed papers.



  • Shane Spiegelman

    August 10, 2023 at 4:53 pm

    My experience was a circus for the first 3 months. Ra, Papa, Ra, Papa.

    I made a journey map graphic, I can share on request.

    Currently there are no huge issues with receiving the 3 R’s. Cost is $1,200 a month after out of pocket insurance maximum. I was not eligible for any foundation support.

    Happy to talk with anyone on the following:

    1. Going off self insurance and on to Medicare
    2. The process for getting non formulary drugs paid for by Medicare
    3. Supplement searching for Medicare Part D and G
    4. The reduced cost for catastrophic drug coverage starting next year (Biden law)

    Best to all pALS and cALS.


  • Carol

    August 10, 2023 at 6:38 pm

    My experience with ALS care has been a nightmare.  Not financially because I have Medicare and a good supplement; I pay over $500 per month for these.  Plus I have declined many medications and equipment because I only have my husband and a private caregiver whom I pay hourly to help with these.  We have to get profiteering out of health care before we will see progress for victims of ALS.  This however will not happen until we transform our electoral system because the medical industry owns our elected officials and the media . Thanks for asking


  • Dagmar

    August 29, 2023 at 12:24 pm

    My experience was very good … in the beginning years. Going on SS Disability was fast, getting on Medicare fast, seeing an ALS specialist – – who diagnosed me and has attended to me for the past 13 years.

    However, as the years went on the price of Riluzole went up, supplementary insurance went up, and pharmacies added their cut to my drug costs. It is now an annual game of researching to find the best price and the hassle of switching pharmacies and insurance. The “middle-man” is steering the ship!

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