TU senior Will Schuller is one of approximately 3,300 people affected by Lambert-Eaton myasthenic syndrome in the United States.
As an involved student athlete in high school, Will Schuller had cause for concern when his diminishing athletic performance became apparent. Schuller visited his primary care physician on Halloween of his senior year in high school. After being referred to a neurologist, Schuller was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS). Amid the flurry of activities related to finishing high school and applying to universities, Schuller visited the Mayo Clinic for nine days, where his original diagnosis was confirmed and he began to be successfully treated with the pharmaceutical drug 3,4-diaminopyridine (3,4-DAP).
LEMS is a rare disease that affects nearly one in every 100,000 people in the United States. According to the Muscular Dystrophy Association, LEMS is an autoimmune disease that interferes with the ability of nerve cells to send signals to muscle cells. Symptoms include weakness in the upper legs and hips.
In regards to first receiving 3,4-DAP, Schuller says, “Thirty minutes after taking this pill, I was able to, like, skip around the waiting room.” He calls the event “the most unbelievable experience you could have.”
Schuller is now a senior at the University of Tulsa pursuing a degree in mechanical engineering. Meanwhile, the pharmaceutical drug that allows him to continue his education has been plunged into the national spotlight due to its skyrocketing price.
From the time of Schuller’s initial treatment, to the end of 2018, 3,4-DAP was offered to LEMS patients for free through a federal provision called compassionate use. Jacobus Pharmaceuticals, a family-owned pharmaceutical company, provided the drug.
On Nov. 29, 2018, Catalyst Pharmaceuticals, Inc. (Catalyst) announced that the U.S. Food and Drug Administration approved Firdapse (amifampridine) for the treatment of adults with LEMS. With this, Catalyst was given the exclusive rights to sell their slightly modified and FDA approved version of 3,4-DAP. Furthermore, Catalyst charges $375,000 a year for the drug. This cost is usually negotiated by insurance companies and not the end price to consumers.
The response to the price hike was brought to national attention by Vermont Senator Bernie Sanders in a letter to Catalyst pharmaceuticals.
Schuller says, “Who’s really getting ripped off are these insurance companies who are having to pay a ridiculous sum of money for a medication that costs pennies to make.”
With respect to the positives of Catalyst receiving the exclusive rights to produce amifampridine, Schuller explains that the new version of the drug no longer needs to be refrigerated, as well as its easier accessibility to newly diagnosed LEMS patients.
In talking about the easier accessibility of the drug, Schuller says, “It’s also because it has now this patent and they’ve done all this R&D on it.” Schuller says, “It’s [more] accessible for people who have just gotten diagnosed with the disease and need the medication”.
Regarding the modification of the drug, Schuller explains, “There are some benefits,” and that, “It’s not all negative.”