ALS News Today Forums Forums Living With ALS Advice needed on Medicare covering radicava home infusions

  • Advice needed on Medicare covering radicava home infusions

    Posted by bob-f on June 8, 2021 at 7:34 pm

    Medicare advice needed.  I am 64 and my wonderful wife who is a nurse gives my Radicava infusions at our home in Ohio.  My work insurance covers the home infusions.  I soon have to sign up for Medicare as my work insurance stops when I am 65.  Does anyone have advice on having Medicare cover home infusions.  I understand it would need to be covered under Part D as a drug but it takes special approval which includes a formulary exception from the doctor.  An advantage or supplemental plan is also needed. I understand approval is not guaranteed.  We were thinking about going with Part G versus an advantage plan.

    Just want to see what coverage others have gotten to have home infusions and Radicava paid for.  Which Medicare providers cover it under D (Anthem, Humana, other?..)?  Do you need a supplemental or advantage plan and could you suggest a provider who is known to cover home infusions? Any help and info would be appreciated!

    gideon replied 2 years, 9 months ago 7 Members · 9 Replies
  • 9 Replies
  • Deleted User

    Deleted User
    June 8, 2021 at 10:22 pm

    Folks at Searchlight hooked me up 100%. They got an assessment done, told me the costs, and even found a charity that helps me pay the huge copay up to 15k per year, renewable next year as well. Contact Searchlight and tell them what your situation is and let them guide you through the maze you are talking about.

    To learn more, call
    1-844-SRCHLGT (1-844-772-4548)

     

     

    • gideon

      Member
      July 16, 2021 at 10:02 am

      Dear John
      Searchlight cover you until 65 years ,afther 65 thy don’t cover you
      Searchlight drop my wife when she reach 65(Please see the contract from Searchlight)P.S thy send us a letter notified us my wife determinate at 65 when she legible for Medicare

  • bob-f

    Member
    June 9, 2021 at 4:07 pm

    Unfortunately, Searchlight told me they could not help with financial assistance once I go on Medicare.  Medicare rules do lot allow it.

  • carolyn-barry

    Member
    June 9, 2021 at 4:11 pm

    I was told the same thing, so home infusion was not a possibility for me.  Though I also was approved for a grant, it did not nearly cover the costs.  Medicare pays a large portion of my costs at an Infusion clinic.

  • Ilana Schatz

    Member
    June 10, 2021 at 2:24 pm

    Medicare coverage does not cover home infusions; some Medcare advantage programs do. We’re covered under Humana Medicare Advantage. We;ve asked ALSA to work on this issue.
    Good luck

  • marianne-opilla

    Member
    June 20, 2021 at 6:34 pm

    I have traditional Medicare with AARP United Healthcare PartG plus a SuperSaver pharmacy plan.  Searchlight does not provide assistance if you have Medicare.  I have been on home Radicava for a year.  I infuse myself with help from my husband.  Nurse comes to access my port.  My home care pharmacy does a “hard ship writeoff” and I pay a reasonable co-pay until I reach my Medicare catastrophic max.  Medicare is paying about 12,000$ per month.  I believe you can infuse at home if you or family member administers it, and there’s an MD order for it.

    I used to be in the home infusion pharmacy business and some pharmacies are better than others with Medicare billing, and it never hurts to negotiate cost with them, or shop around.

    • gideon

      Member
      June 27, 2021 at 8:07 pm

      Dear Marianne
      Thank you for your information, Home infusion company don’t budge. We have a advantage plan with part D, Home infusion copay is about 20% off $14000.00 for each infusion, This is a broken system, same medication in EU is only 570 Euro, I try to get someone to administrate ,but I can’t find anyone todo it.
      We need to fight to change this system!!!
      Congressman get a kickback from the pharmaceutical company and we pay for it
      President Trump sign into a law “Right to try” My Dr given me prescription for Ibudilast (In EU was approve for ALS)Because in US is on clinical trial it. was refused
      Very MAD that I can’t help my love of my life do to US regulation.

  • jpotts71

    Member
    July 13, 2021 at 9:55 pm

    I just got on this forum and saw your post. I didn’t read through all the replies, but I wanted to share with you my recent experience in getting help with paying for Radicava. My husband has Medicare with a supplement and part D. This left us with a medication co-pay of $545/mo, not including nursing and supply costs. I was given the name of a foundation called Healthwell 1800 675 8416. Have you contacted them? They issued a grant to us for up to $16,000 for this year for rx cost (We will need to re-qualify next year). In the past, Searchlight offered us $0, so I really encourage you to reach out and see what they say. The process took literally 20 min. It was the easiest thing I’ve done in a long time. Another foundation name I was given is PSI 1800 366 7741. My husband will be starting his in home infusions in August. I will be trained to administer, but may have to go to the hospital once or twice per cycle to have the port accessed.

    • Deleted User

      Deleted User
      July 14, 2021 at 12:01 pm

      Searchlight connected me with Healthwell. They must be barred by a Medicare regulation from helping folks on medicare to get these grants, mine was through CHAMPVA, which is also government insurance.

       

      My grant was $15,000 and I was instructed that they would accept me next year. I am a veteran.

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