• What money can buy?

    Posted by Deleted User on April 27, 2023 at 1:39 pm

    If there is a fund with unlimited resources to assist only MG patients, what would you like to pay for that will ease your MG life? Thank you for your answers 🙂

    GREG M CLARKE replied 1 year ago 7 Members · 10 Replies
  • 10 Replies
  • ChrisM

    Member
    May 3, 2023 at 1:12 pm

    A cure 🙂

    • Deleted User

      Deleted User
      May 3, 2023 at 1:15 pm

      Yes, it would be great 🙂

  • Bill Suphan

    Member
    May 3, 2023 at 2:21 pm

    Just a cure.  I can take it from there.

  • Deleted User

    Deleted User
    May 3, 2023 at 2:31 pm

    Excellent answer! I agree.

  • George Kesterson

    Member
    May 3, 2023 at 3:04 pm

    I agree that is a great answer, in the mean time I wish they would find some way to self administer something at home.

    • Deleted User

      Deleted User
      May 3, 2023 at 3:18 pm

      Yes, I understand. My mom barely walks to the car when we ride her to the infusion center.

      • Robert B.

        Member
        May 3, 2023 at 5:01 pm

        You might want to check with American Outcomes Management (AOM).    They are both the pharmacy (send IVIG to your home) and provide the nurses that come to your home for infusions.  My experience with them has been excellent?

      • Deleted User

        Deleted User
        May 3, 2023 at 5:15 pm

        Unfortunately, in Europe we don’t have this option for home infusion. I think.

  • Ronald E. Clever

    Member
    May 3, 2023 at 3:57 pm

    I would think that the insurance dictates what they will pay for as to administering IV.  I am on Vivgart and before that IVIG and they have always sent nurses to my house for treatment.

  • GREG M CLARKE

    Member
    May 18, 2023 at 2:01 am

    My biochemist friend says we could be treated with what are called “Orphan Drugs.” They are called this because there are not enough people needing the drugs to justify the millions of dollars to pay for the research. Either no research is done, the price goes into the hundreds of thousands of dollars over a lifetime, or existing drugs are used off-label (or as my pharmacist said, as he handed me my CellCept, “How did your kidney transplant go?”)

    The space race in the 60’s paid off in spades even though we couldn’t anticipate all the new technology that would fall out.

    I’d like to see a system where a researcher could follow up a hunch, or look for possible alternate use for a unexpected experimental result, without having to jump through hoops to get funding,

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