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    • #24584
      Jim Schneider
      Participant

      During the CureSMA webinar on Evrysdi they indicated Medicare coverage would be under Part D due to it being a take at home medication.  I don’t know about anyone else but my drug insurance barely covers much of the cost of Name Brand drugs so I’m not sure I could ever afford this at $340,000 per year.  Drug co-pays are really going to limit access to this new drug unless I’m missing something.

    • #24586
      Derek Markulin
      Participant

      I am very interested to see how this works. If one Part D plan would work better over another as far as out of pocket maximums and co-payments. I believe four of the plans had $47 copays for brand name whereas Cigna has a 20% co-pay for brand name.  The annual open enrollment period to select a new Part D plan is coming up October 15 to December 7th. This would allow people to choose the plan which would be most beneficial to their situation. But in saying this I do believe all plans have to offer brand name coverage but at what co-pay I don’t know. You would have to check your plans formulary list and drug cost which probably does not have this drug listed as of yet. My plan has not covered certain brand name medications before which is frustrating but I do believe they are required to offer at least something from every type of medication. Meaning if not the brand name at least a generic version which in this case would only be offered as a brand name as there is no generic option.

      This is on the Medicare website: If you can’t find your medicine on a health plan’s drug list in your state’s Marketplace, you can request that your plan cover it or give you access to it. All plans sold on the Marketplace are required to have a way to request access to off-formulary drugs.

      You can request that your insurer cover a medication not on its formulary with the help of your doctor to explain the medical need. If your request is denied, you have the right to appeal your health plan’s decision.

      With all that said, I still don’t know if there would be unattainable costs involved. My plan is I’m hopeful this will be figured out soon and that we will all have access to it.

    • #24587
      Dick
      Participant

      I was actually bowled over when I heard the speaker say it would be part D not part B. I’m still doubtful about her answer. If it should turn out to be part D on the very first shipment, the receiver would blow through the first line of coverage and the so-called doughnut hole and into the part of plan D where the only charge is something like $5 or $10. That would be totally messed up because the pharmacy has to pay $340,000 which means the insurance company would be covering $330,000 or $335,000. No part D insurer is set up to do that. Remember co-pays can’t vary with part D plans except to the extent they vary on each individual carriers formulary ranking. But none of that matters after passing through the doughnut hole. So unless my thinking is totally confused (an event which seems to happen all too often), part D coverage for this new drug treatment makes no sense whatsoever.

    • #24588
      Lupa F
      Participant

      You’re almost certainly going to hit some sort of out-of-pocket maximum and the rules with that will kick in. You won’t ever come close to paying $340,000, but you might end up paying a decent amount. I pay about $3500 a year for Spinraza since that’s my maximum and I hit that instantly from the first one I do each year.

      Dick, from my understanding, after the donut hole, you go into catastrophic coverage. “During catastrophic coverage, you will pay 5% of the cost for each of your drugs, or $3.60 for generics and $8.95 for brand-name drugs (whichever is greater). ” The 5% is obviously going to be greater so that could be a big chunk of change.

      • This reply was modified 1 year, 3 months ago by Lupa F.
    • #24589
      Dick
      Participant

      I just went to the Medicare part D website to confirm that Evrysdi is not listed as a covered medication available on any plan as of now. Not at all surprising.

    • #24591
      Lupa F
      Participant

      Spinraza wasn’t listed for most insurance companies either for several months even though they had started covering it, so I wouldn’t read much into that.

    • #24596
      Kelly Miller
      Participant

      So having worked for Social Security for 17 years,  12 of which were spent doing a lot of Medicare, I can say it will definitely be Part D. The only way it would be Part B would be if we get the medicine administered to us while at the Dr office by the staff. Any meds we give ourselves is going to be under Part D.

      Now, today I got an email from MDA Quest Magazine and they had a link to the Evrysdi website. One of the things they talk about is contacting what they call a PAL that will help us navigate the insurance issues. They also said there are ways to get financial assistance. I envision this person being like the FAM for Spinraza, only better I hope. I’m going to put the link on here. I hope it’s allowed.

      https://strongly.mda.org/fda-approves-genentechs-evrysdi-for-treatment-of-sma-in-pediatric-and-adult-patients/?j=257704&sfmc_sub=37391232&l=2296_HTML&u=8113697&mid=100019003&jb=27&utm_source=sfmc&utm_medium=email&utm_campaign=MDA+Quest+Newsletter+-+August+2020&utm_id=257704&sfmc_id=37391232

    • #26918
      Jim Schneider
      Participant

      Now that this has been out there awhile, is anyone taking it that is on Medicare?  How is it covered?  Have a call in to the PAL rep but haven’t heard back.

      • #26919
        DeAnn R
        Keymaster

        I’m on Medicare. It’s being covered through my drug plan. So far so good as far as coverage.

    • #26935
      Tammy
      Participant

      I’m on Medicare primary and Medicaid secondary. My Medicare Part D pays for the drug and the Medicaid picks up the co-pay. It really depends on your state though from what I have heard from others. I’m in NJ and I have heard people in PA getting denied with the same insurance. I did get a lot of prep advice prior to starting the medication from the genetech PAL. She was fantastic. Hopefully yours will be too. Should definitely speak to them and ask as many questions as you can think of. I had all of my ducks in a row prior to seeing the neurologist to get the script for the med. It made things move along much quicker. Whereas I know others who have seen the neurologist first and then had to go for genetic testing afterwards, wait for redults, and whatnot to be submitted with the script. I had all of that ready in advance because I knew it would be required to get approval.

    • #26952
      Jeremiah Kelley
      Participant

      I’m on Medicare parts A, B, and D.  My Part D doesn’t list Everysdi in their formulary but they cover it.  The co-pay is around $1500.00 per shipment.  Genentech referred me to an organization that picks up the co-pay, plus all my medicare part B, plus other miscellaneous expenses like trips to my Neurologist.  What the status of the “doughnut hole” is I don’t know, but I’ve been on it for for nearly six months with no hitches.

      I recommend talking to Genentech.  I find them far more helpful that my Spinraza representative was.  My rep texts me every time a shipment is due and texts me again to make sure it arrived safely.  The only disadvantage is a certain amount of paperwork which is YOUR responsibility to complete.  I do have a copay with Accredo, which is the drug company that mixes up the drug in a solution and ships it out, but that’s only $15.

      • #26965
        Tammy
        Participant

        What paperwork are you referring to? Just want to make sure i didn’t overlook something on my end with anything. I didn’t do any paperwork other than the genetech start form. But maybe you’re talking about something else that doesn’t apply to me.

        • #26974
          Jeremiah Kelley
          Participant

          After the initial application, the paperwork mostly concerns the non-profit that pays my copay.  They also pay certain Medicare costs, including Part D premiums, and miscellaneous other expenses, like travel to and from a neurologist.  That’s where a lot of paperwork comes in.  You have to file for each expenditure that qualifies for reimbursement  separately.  If it’s a recurring expense, like monthly Medicare premiums, you have to file claims monthly.  The only claim you don’t have to file for is the actual co-pay – they work that out with Accredo I believe, the supplier of the Evrysdi solution.  It’s not as complicated as all that may sound, but you just have to stay on top of it if you want reimbursement.

        • #26975
          Tammy
          Participant

          Ohhh ok. Got ya. Does anyone know if you have to get blood work every so often in order to keep approval from insurance for each new prescription. In other words after I use up the 5 refills I have now, I have to get another script. Do I need anything else along with that?

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