Posted by Michael Wonder on 01 Dec 2018
‘A loss for the rest of us’: An FDA approval is a boon for a drug maker, but could come at a major cost for patients
30 November 2018 - Vickie Moored can walk again. Her words don’t slur, her vision isn’t blurred, and she no longer collapses every day.
The 65-year-old from Elkton, Va., says she has her life back, thanks to the stunning efficacy of a cheap, but unapproved, chemical called 3,4-DAP. It’s a medication she would not have but for the largesse of a tiny, family-run drug maker that has been giving it out, for free, for decades.
But Moored, along with others who share her rare neuromuscular disorder, are concerned that their fortunes could change. The cost of the treatment will likely skyrocket — from next to nothing to potentially more than $100,000 without insurance — now that the FDA has approved a medicine to treat their disease, Lambert-Eaton Myasthenic Syndrome.
