The cost of this new drug for LEMS, Firdapse, is insanely high. I don't know if anyone here takes the drug. But I had to post this in case anyone does.

They did a couple of clinical trials, and a tweak of 3,4-DAP (free base form). And the FDA approved the changes of their "new" drug called Firdapse (salt base form of 3,4-DAP).

$375, price leads disabled mom to ration meds - CNN

I don't like posting Wiki, but this gives a general synopsis of history.

Amifampridine - Wikipedia

Mestinon Syrup, which used to be made in the US (and was cheaper), has been made in Canada for the past several years. The cost per year (without insurance) is $44,000.

So those of us with more "rare" diseases suffer more. I doubt that either drug is costly to make. Ingredients would be equivalent to those needed to make a cake, IMO. I would bet these are marketing costs, which they don't need to even do. Why market the drug to those who don't need it?

Hopefully, they will keep the old 3,4-DAP available for use. Or they'll raise the price to compete with the new drug!


Annie