Lambert-Eaton Myasthenic Syndrome
Lambert-Eaton Myasthenic syndrome (LEMs) is a rare autoimmune disease. The body’s immune system targets nerve cells meaning patients experience muscle weakness. Other symptoms of LEMs include difficulty walking and swallowing, blurry vision, abnormal blood pressure, dry mouth, and dizziness.
However, there is an effective treatment for this condition. Called a “miracle drug” by some patients, it has allowed many individuals with LEMs to live a normal life.
Unfortunately, now that improved quality of life is being threatened as that drug has just been given a 375,000 dollar price tag.
The Treatment
20 years ago the Muscular Dystrophy Association asked Jacobus Pharmaceuticals to create a drug in the United States for LEMs which had shown efficacy in Europe. They complied, successfully replicating the treatment. Although the drug wasn’t yet approved by the FDA, patients were able to get the drug from Jacobus under the FDA’s Compassionate Use program. The best part was that Jacobus didn’t charge LEMs patients anything for the treatment as there were so few patients and it was so cheap to produce.
However, Catalyst Pharmaceuticals also began trying to replicate this treatment from Europe a few years ago. They bought a similar molecular structure for 5 million dollars and were able to create their own version of the drug that works the same way. They named it Firdapse. Catalyst received approval from the FDA for Firdapse in November of 2018. It is the first treatment for LEMs that has ever received FDA approval. In December, Catalyst announced how much it would cost for patients.
375,000 dollars per patient per year.
Since Catalyst also received Orphan Drug Designation for this treatment, they were granted seven years of market exclusivity for the drug. That means Jacobus has been forced to stop making the drug and patients have no choice but to get it from Catalyst. For, yes- 375,000 dollars.
Bernie Sanders Steps In
Senator Bernie Sanders heard about this absurd listing price and wrote a letter to the Department of Health and Human Services as well as the U.S. Centers for Medicare and Medicaid Services to get answers. He asks a total of 10 striking questions in this letter including- “How many Medicare or Medicaid patients will suffer or die because they cannot afford Firdapse?”
You can read Senator Sanders full letter in regards to Catalyst’s price hike here.
You can also read his full interview with LEMs patient, Rebecca Hovde here.
Sanders states that the reason for this price is a result of pure greed. After all, the drug is cheap to manufacture and therefore there is no reason why Catalyst needs to charge so much. Ultimately, a pharmaceutical company’s greed is impacting patient’s quality of life and there is something seriously wrong with that.
“If Catalyst does not substantially lower the price of this medication, Congress must act to ensure it is affordable for every patient.” – Bernie Sanders
More information about Sanders’ inquiry is available on his website.
You can also read more about Catalyst and Firdapse here.
