A one-year supply of the drug Firdapse now costs as much as a house. And a mother of two now has no choice but to ration her current supply.
Bhanu Patel is helpless without the drug 3,4-DAP, which is used to treat a rare autoimmune disease known as Lambert-Eaton myasthenic syndrome (LEMS), which affects just one in 100,000 people in the U.S., according to CNN. The drug used to be free, but the manufacturer, Catalyst Pharmaceuticals, recently won FDA approval for its version of the drug, which it named Firdapse. The annual list price for Firdapse is $375,000. That’s the same price as this four-bedroom, 3,082 square-foot house in Houston, Texas.
Basically, Patel could buy a new house, every year, for the same price as the medicine she needs just to get through the day.
“Without this medication, you just can’t even move. It’s like your body is totally like a sweet potato,” Patel, a LEMS patient, told CNN, adding that in addition to mobility issues, she even had difficulty moving her tongue while eating.
Patel has a three-month supply of Firdapse, but instead of taking four pills a day as is recommended, she’s taking just two. While she applied for help affording the drug through the medical aid nonprofit Assistance Fund, she has yet to hear back. Her son, Krishan Patel, told the outlet that his mother was also rejected by Medicare for the drug.
“If we’re not shining a light on these things, then really what the hell are we doing?” Krishan said.
Prior to acquiring FDA approval for the development of Firdapse, 3,4-DAP was available for free through a “compassionate use” program offered by the FDA. Earlier this month, Senator Bernie Sanders (I-Vermont), who just recently announced his run for the Democratic presidential nomination in 2020, wrote a letter to the CEO of Catalyst Pharmaceuticals demanding answers as to why his company charges so much for the drug.
“I am profoundly concerned that Catalyst’s actions will cause patients to suffer or die,” Sanders wrote. “By setting such a high price and forcing production and distribution of the older, inexpensive version to cease, you are threatening access that patients had to a cheap version of this product, and handing a completely unwarranted bill to American taxpayers.”
However, Sanders has still not received an answer to the letter, and is now demanding action from the FDA to make sure the drug remains available to LEMS patients who can’t afford its high cost.
“Instead of answering my questions or lowering the price of this drug, [Catalyst] hired a lobbying firm,” Sanders told CNN this week. “It is now clear that some patients are rationing their supply of Firdapse because they cannot afford to cover the outrageous cost of the drug, which they used to receive at no cost.”
“If Catalyst does not immediately lower the price of the drug, I will ask the FDA to allow pharmacies and manufacturers who were previously making this drug to be permitted to resume providing it, so that all patients can get the medication they need,” he continued.
Carl Gibson is a politics contributor for Grit Post. His work has previously been published in The Guardian, The Washington Post, The Houston Chronicle, Al-Jazeera America, and NPR, among others. Follow him on Twitter @crgibs or send him an email at carl at gritpost dot com.