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What money can buy?
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 🙂
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10 Replies
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A cure 🙂
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Yes, it would be great 🙂
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Just a cure. I can take it from there.
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Excellent answer! I agree.
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I agree that is a great answer, in the mean time I wish they would find some way to self administer something at home.
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Yes, I understand. My mom barely walks to the car when we ride her to the infusion center.
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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?
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Unfortunately, in Europe we don’t have this option for home infusion. I think.
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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.
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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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