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How much does it cost to have LEMS?
I’ve asked the question, but I don’t have the answer. I can tell you what it costs me, but each of us is in a different situation, different insurance, different income, and may even live in a different country. Well, you get the picture.
What I do know is LEMS medications can be very expensive, because, well just because rare diseases are that way.
I’ll give one example where I was able to mitigate the cost of a drug, and if you have others, please share. That information could help someone else.
For me it was amifampridine. Designated an orphan drug, most of this drug class are very expensive. In my case I was prescribed Firdapse. The cost for Firdapse is very high, but the assumption is it will be covered by insurance. But not everyone has insurance. That was my case until it was picked up by the VA after a long approval process. But Catalyst didn’t let me go without the drug. They have a Patient Assistance Program to help. I filled out paperwork, including my financial situation, and I received the drug at no cost until the VA took over. How good was that! So that’s my tip. If prescribed Firdapse, make sure you check into their Patient Assistance Program if you have financial or insurance difficulties.
Do you have a tip on getting a medication at reasonable cost? -
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