Why Does a Once-Free Drug Now Cost $375,000 a Year?

Senator Bernie Sanders is taking on a large pharmaceuticals company and demanding to know why a life-saving drug for a rare condition has seen its price increase by hundreds of thousands of dollars.

Sanders, who has made the problem of drug pricing a major focus of his time in the Senate, released a letter dated February 4 and addressed to the company Catalyst Pharmaceuticals. In the letter Sanders charges the company with being “greedy” and of exploiting the American people.

A drug to treat a rare neuromuscular disorder called Lambert-Eaton myasthenic syndrome (LEMS) used to be free under Jacobus Pharmaceutical. However, since Catalyst Pharmaceuticals took over the license last year and gained a monopoly on the drug, it is now slated for an annual list price of $375,000 under the brand name Firdapse.

Sanders wants to know why.

Writing in a separate letter to the Department of Health and Human Services and the U.S. Centers for Medicare and Medicaid Services, Sanders says, “As you likely know, Catalyst’s drug Firdapse is the only LEMS treatment that is approved by the Food and Drug Administration… Unfortunately, rather than take this responsibility to patients seriously, Catalyst has exploited their market monopoly.”

The second letter Sanders outlines how the company’s announced list price appears, in his opinion, to be disproportionate with the once $0 fee previously charged.

“Opportunistic drug companies such as Catalyst are taking advantage of our current healthcare system for their own profit,” the letter goes on to say. “In its 2017 annual report, Catalyst said that its ‘ability to commercialize our products successfully, and to attract commercialization partners for our products, depends in significant part on the availability of adequate financial coverage and reimbursement from third-party payers, including, in the United States, governmental payers such as Medicare and Medicaid.’”

Sanders points out that, according to documents filled with the Securities and Exchange Commission, Catalyst appears to have conducted research into how many LEMS patients have insurance as it looked to set the price for its drug. Of itself that isn’t unusual, but Sanders believes this was Catalyst effectively looking at what price it could set to profit off this insurance.

He concludes, “It is abundantly clear that Catalyst expects taxpayers, primarily through Medicare and Medicaid, to foot the bill for its price gouging.”

Senator Sanders asks 10 questions in his letter, but they can be summarized neatly as what financial and logistical considerations led to Catalyst believing this was an appropriate price to put on Firdapse. He is also particularly interested in the company’s claim that patients will only end up paying about $10 a month out-of-pocket, asking them to explain more.

Sanders make it clear though that he believes this pricing is radically unfair and that he fears it will lead some patients to suffer and die.

At the time of writing Catalyst Pharmaceuticals has yet to respond to Senator Sanders’ specific claims, however in a statement to the press the company said, “Catalyst’s top priority is improving patient care in the [Lambert-Eaton Myasthenic Syndrome] community and potentially elsewhere within the neuromuscular community. We will respond to Senator Sanders’ letter in a timely manner and provide information about Firdapse, and the programs that we have in place to raise awareness of LEMS, facilitate accurate and timely diagnosis, and broaden affordable patient access to an FDA-approved treatment.”

LEMS is a disease that can be debilitating. The disease causes the body’s immune system to target the junctions where our nerves and muscles connect. When that happens the process of communication between nerves and muscles becomes more difficult, leading to problems with mobility and normal bodily functions. LEMS causes a range of issues including extreme fatigue that can make it difficult to accomplish day-to-day tasks, weaken muscles and cause inability to walk, trouble breathing, speaking and swallowing. An estimated one in 100,000 Americans suffers with the condition.

There is a continued line of argument from pharmaceutical companies, perhaps most infamously made in the case of now-jailed Pharma Bro Martin Shkreli, that seizing licenses and then using that monopoly to generate revenue is part of their duty to their investors. This, they say, pays for more treatment innovations elsewhere, too.

Drug companies also say that patients do not end up feeling those cost hikes, thanks to schemes that ensure patients can access the drugs when they need them. However, the American taxpayer does pay for those price hikes and, given that patients with debilitating illnesses are often unable to work full-time, they will feel the pinch as taxation climbs higher.

Take Action

What is now abundantly clear is that Americans are sick of this price gouging, and it’s up to Congress to stop investigating and start the necessary work of fixing this broken treatment system via the legislative process. Join over 66,000 Care2 members and sign and share the petition asking Congress to legislate transparency in drug pricing.

If you want to make a difference on an issue you find deeply troubling, you too can create a Care2 petition, and use this handy guide to get started. You’ll find Care2’s vibrant community of activists ready to step up and help you.

 

Photo credit: Getty Images.

60 comments

heather g
heather g2 hours ago

Thank you Bernie!

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Irene S
Irene S5 days ago

Signed of course!

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Vincent T
Vincent T5 days ago

Thank you

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Janet B
Janet B6 days ago

Thanks

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Laura R
Laura R6 days ago

Greed..a very sorry human condition.

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Virgene L
Virgene L6 days ago

Thank you Mr. Sanders--and others who have tried to do something about this price gouging. The companies who do this must have no conscience. We need to put them out of business.

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Dr. Jan H
Dr. Jan Hill6 days ago

thanks

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Leo C
Leo C6 days ago

Thank you for sharing!

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Pam B
Pam Bruce6 days ago

It is called greed.

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Linda Wallace
Linda Wallace6 days ago

Good for Sanders. This is price gouging at its worse.

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