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The drug that allowed Will Schuller to run and play football despite his rare nervous system and muscle disorder was once free.
Now, it costs his family more than $ 375,000, before insurance, for a month's supply of drugs, he told NBC.
With a minimal adjustment to its formula, the small pharmaceutical group, Catalyst became the exclusive owner of the drug formerly known as 3,4-DAP, gave it a fancy name (Firdapse) and an even more sophisticated price.
Will's family was hit – and devastated – by the astronomical increase, as did Senator Bernie Sanders, who wrote to Catalyst to pressure the drug maker to justify the price hike.
Will Schuller, a senior student, battling a rare and debilitating disease since 2014. The drug that allows him to walk and go to school has gone from 50% to 573,000 free dollars a month after a drug manufacturer changed his formula slightly and went on a hike. the price
If Will can not afford to pay for his medication, he will depend on a wheelchair and may not be able to keep his head up.
Will has always been sporty, excelling at football and a natural born runner, everyone knew him to be "that good guy," he told NBC. But when he had finished high school in Overland Park, Kansas, at the age of 18, Will began to slow down very slowly.
In a few weeks, he could not finish his shopping. After a month, Will's sister had to take her to the stairs of the family home.
He was constantly, desperately tired of not being able to go to school.
Nobody could understand what touched the high school student who had been so active.
After six weeks and countless doctor visits, Myasthenic Lambert-Eaton Syndrome (LEMS) was diagnosed.
LEMS only affects about one in a million people, including about 3,000 in the United States.
It is a rare autoimmune disease that causes an attack of the body, damaging nerve endings and cutting off signals of the nervous system that induce muscle contraction.
LEMS is an autoimmune disease that causes degenerative weakness throughout the body.
Now, Catalyst has added a conservation agent and has been approved by Firdapse. He actually sells prescriptions for the same compound for $ 573,000 per month
Symptoms begin in the legs, but can progress until people can no longer walk, raise their arms above their head, and find it hard to sit or hold their heads up. In the end, it may be impossible to swallow, talk or breathe and is closely related to cancer, especially lungs.
Fortunately, there is a treatment – exactly one.
The drug was only known as 3,4-diaminopyridine. Nobody gave it a more digestible name because its original manufacturer, Jacobus Pharmaceuticals, did not even get FDA approval.
Instead, the compound – a pill – has been made available to the few patients who desperately need it for free via the FDA's "Compbadionate Use" program.
The drug instantly changed Will's life.
After receiving his first dose at the Mayo Clinic, he goes to the lobby. And we're going to the next appointment, "Ann told her mother, her mother, at NBC.
"And I'm with the wheelchair to try to follow him.
& # 39; I do not believe in miracles. But it was damn close to one. … it was a miracle drug, of course.
At the height of his suffering, Will could not even climb the stairs. Without medication, he has trouble standing up or even sitting down
Will may not be able to start playing football again, but at least, having access to his life-saving drugs, he can walk and be independent
It's been five years since Will has been living a normal life with the drug. He moved to go to school at the University of Tulsa, where he is studying here as a mechanical engineer.
If everything goes as planned, he will graduate in the spring.
But then Catalyst got wind of the compound that changes life.
The company added a preservative, obtained a patent and in May of last year, the FDA agreed to review the drug for approval.
Now they hold the exclusive rights to the drug that they have dubbed Firdapse, the FDA's approval and the power to charge, basically, everything they want for the drug, said the Senator Sanders.
For now, they have chosen $ 375,000 per monthly prescription.
The company insists that the price is totally "reasonable" depending on what the medicine does and the market.
Senator Sanders is not convinced and says instead that the price hike is "a blatant flogging of American taxpayers" in her scathing letter demanding that Catalyst explain her actions.
Catalyst says health care plans will only cost $ 10 per month for most insured clients. It's not clear how much Will and his family will have to pay a month for the medicine now.
But that's something else, Ann told NBC. She says her insurer should not have to pay such astronomical fees for the same medication that was free for the family so recently.
"The exceptional price set by Catalyst can not be maintained," said Sanders.
"Patients in America should not be allowed to suffer or die because of the greed of a pharmaceutical company. If Catalyst does not substantially lower the price of this drug, Congress must act to make it affordable for all patients. & # 39;
But, until now, no one has moved and the Schuller family will continue to spend all that is needed for Will's life to stay in the running.
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