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Medication for LEMS "Firdapse" just set at $375,000 by Pharma in US


Senior Member
I am posting a link to a CNN article from today re: the pharmaceutical company "Catalyst" decision to set the annual price for the LEMS (Lambert Eaton Myasthenic Syndrome) medication, "Firdapse" at $375,000 per year! This medication is also known as Amifampridine or 3,4-DAP.

I do not take this medication but I know MANY people who do and they are in dire need right now. I have the LEMS autoantibody and many (but not all) of the symptoms of this diagnosis. I was able to reverse my profound muscle and breathing weakness with two other treatments (IVIG and Rituximab) but I know of many people in which Firdapse was the only medication that helped them.

I am NOT posting this to start a political debate vs. to make people aware of what is happening with this medication in case they (or anyone they know) uses it. Both political parties want to lower drug prices yet both still accept major donations from Pharma so nothing will change.

Here are some quotes from the article and I cannot tell you how upsetting this was to read :mad::mad::mad:.

Sen. Bernie Sanders sent a blistering letter to a pharmaceutical company on Monday, demanding answers about its decision to charge $375,000 for a formerly low-cost drug and calling it corporate greed at its worst.

"Catalyst's decision to set the annual list price at $375,000 is not only a blatant fleecing of American taxpayers, but is also an immoral exploitation of patients who need this medication,"the independent senator from Vermont wrote.

"I am profoundly concerned that Catalyst's actions will cause patients to suffer or die." Sanders sent the letter to Patrick McEnany, president and CEO of Calayst Pharmaceuticals, about the pricing of its drug Firdapse, which is used to treat a rare neuromuscular disease called Lambert-Eaton myasthenic syndrome. The disease weakens and fatigues the body's muscles and affects about 1 in 100,000 people in the United States.

Sanders asked the company to respond by February 18. When contacted by CNN, Catalyst said it had no immediate response.

Patients had been able to get a version of the drug for free through a compassionate use program through the US Food and Drug Administration. In November, Catalyst acquired the North American license for Firdapse and then announced, in a December 13 phone call with investors, its intention to set the list price at $375,000, according to the letter.

"By setting such a high price and forcing production and distribution of the older, inexpensive version to cease, you are threatening access that patients had to a cheap version of this product, and handing a completely unwarranted bill to American taxpayers," Sanders wrote.


Senior Member
In Germany, you can buy 100 tablets 10mg for ~2,800 €.


Wikipedia says that German pharmacies can also make a compounded version that costs 639 € for 500 tablets (5 mg).

"In Deutschland wird Amifampridin als NRF 22.3-Rezeptur in Kapseln mit 5 Milligramm (andere Stärken auch herstellbar) in Apotheken hergestellt (Kosten hier für 500 Stück mit 5 Milligramm 639 Euro) oder als Fertigarzneimittel Firdapse (Kosten hier für 100 Stück mit 10 Milligramm 2893,03 Euro) nach Verschreibung durch einen Arzt in Apotheken zubereitet/abgegeben.[6] Für die zugelassene Höchstdosis von 60 mg pro Tag lagen die jährlichen Kosten für die Apothekenzubereitungen zumeist unter 3.000 Euro während die jährlichen Kosten für das Fertigarzneimittels Firdapse bei Einnahme der Tageshöchstdosis in Deutschland knapp 64.000 Euro betragen.[7] Ähnliche Preisanstiege in Großbritannien veranlassten namhafte britische Neurologen, einen offenen Protestbrief an den britischen Premierminister zu senden.[8]"


Happy to help if anyone needs further info!