I have been diagnosed with Lambert Eaton Myasthenic Syndrome. LEMS is a neuromuscular condition that makes it difficult to move my muscles as I normally would.
In 2018, a new drug company obtained FDA approval to produce 3,4 DAP under the brand name Firdapse. With the new company came new pricing, and the list price for my 80 mg dosage soared to $500,000 annually. I later switched to a similar medication, Ruzurgi, for medical reasons. Although Ruzurgi costs less than Firdapse, the annual price is still $250,000.
I’m lucky to have insurance coverage through my husband’s work that helps me afford my medications, but I worry about the strain these prices put on other LEMS patients and the system as a whole –– as well as what will happen when I go on Medicare in two years. I don’t know how a patient without insurance coverage could afford the astronomical price tag for these drugs.
The prescription drug pricing system in the U.S. is rigged against patients. We are fighting to change that.
Patients For Affordable Drugs will collect patient stories and amplify the voices of patients to make policymakers understand the heavy toll of high priced drugs.
Share your storyPatients For Affordable Drugs is the only independent national patient organization focused exclusively on achieving policy changes to lower the price of prescription drugs.
