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    • #16746
      Robert Taylor
      Participant

      Hi, I am trying to make a decision on whether to do Radicava infusions at home or at an infusion center.  I have medicare, Medicare Supplement Plan and Plan D Prescriptions. It appears that the costs for doing it at home would be much higher for me. But I am concerned about my ability long term to be going to the infusion center 12 times a month. I also wonder if there will be more problems if I do it at home.  I appreciate any insight others using Radicava could give me.

      • This topic was modified 10 months, 1 week ago by Robert Taylor. Reason: mis spelling
    • #16757
      Ilana Schatz
      Participant

      hi Robert,

      I’ve been doing home infusions for over 2 years and it’s been perfect for me, especially during covid.  You need someone else to do it for you.  My partner and I use that time for spiritual reading and non-distracting time together.\

      At this point, Medicare does not cover home infusions.  We’ve spoken with ALSA and they’re working on it.  Since it’s open enrollment, you could find a Medicare Advantage plan that does cover it; we have Humana.  There is also a foundation you can apply to for help9 with the drug cost.

      Good luck

       

    • #16762
      Cindy
      Participant

      Hi Robert. I’ve been going to an infusion center for 3 years for Radicava. When I started in Nov 2017I was still driving and walking. I am now wheelchair bound. I too have an insurance issue. Going out is more taxing now.    But I welcome the outings. The nurses are great. I look at it as a social occasion.  I’m not sure you are aware but There is a 3 rd clinical trial for oral Radicava which is now fully enrolled. We are about 18 months from  hopefully having that option.

    • #16763
      Astrid
      Participant

      Hi I  wish we had that choice, in the netherlands we only have Riluzol.

    • #16764
      Cindy
      Participant

      I’m so sorry Astrid. Not sure why every treatment is not available worldwide.

    • #16770
      Rhonda
      Participant

      My husband started his Radicava infusion at the hospital, then we transitioned to doing it at home.  He had Medicare, Supplemental and Plan D.  I don’t recall  how much it was, but I feel like almost all of it was covered.  (This was August 2019 – February 2020) I was the one to administer his infusion, and I am not a healthcare professional.  I was incredibly nervous at first, but after having watched the nurses at the hospital, and watching MANY tutorials on YouTube, I became confident and it became very routine.  Steve would have a glass of wine and watch the news during the infusion.  As time went on and Steve’s mobility declined, we were so grateful to be able to do this at home.  I don’t know if this is helpful, but just wanted to share our experience with you.

      Best of luck Robert.

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