My name is Ginny Boynton and I’m from Mechanicsburg, Pennsylvania. I am a mom to two sons, and I used to be active in sports and outdoor activities –– until 2001, when I started having mobility issues.
When my kids were finishing kindergarten and third grade, respectively, I started having physical difficulty with certain tasks. In retrospect, I noticed these symptoms in April when running behind my son’s bike to teach him how to ride was more difficult than I felt it should be. The weakness in my legs started to expand to other muscles.
I was lucky that a large teaching medical center was close, and I was referred to a neurologist who treats other patients with my disease — Lambert Eaton Myasthenic Syndrome. LEMS is a neuromuscular condition that makes it difficult to move my muscles as I normally would.
My neurologist had me tested with an EMG, and when the results of the test came in, the doctor said my case was a classic example of Lambert Eaton Myasthenic Syndrome, or LEMS.
After my diagnosis, I was able to get my 3,4 DAP medication early on and luckily, it came at no cost to me. This medicine greatly improved my quality of life and quickly provided encouraging results for treating my LEMS. Without it, I would be unable to move.
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.
These prices are out of control and are not sustainable for our country. A system that allows runaway drug prices like these places a burden not only on patients themselves, but on everyone in this country by way of the outsized financial responsibility paid by taxpayers. We need reforms to rein in drug prices to a sustainable, affordable level.
