What You Need To Know About Wilson’s Disease And Drug Prices

For more than half a century, Grandview, Michigan, resident Bruce Mannes has taken a drug Cuprimine (penicilamine) to manage his Wilson’s disease, a genetic disease that prevents the liver from properly filtering the metal copper which leads to a build-up in the patient’s organs.

While we all need a tiny amount of the copper to be healthy, large amounts are poisonous. Cuprimine acts as a metal binder and allows copper, and other metals such as mercury, to be excreted in urine.

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That’s great news! A drug that can help someone with Wilson’s disease. Good job! Source: www.giphy.com

Before retiring and enrolling in Medicare, Mannes paid a $25.00 co-payment for Cuprimine. But once he no longer had private insurance, Valeant upped the price of the drug significantly–and so did the out-of-pocket co-pay he now had to pony up.

In fact, his co-pay went up to a staggering $10,000 a month for the Wilson’s disease fighting med.

Although Medicare covers much of that cost, it still leaves Mannes with an $1,800 co-pay, which on a fixed income, is a long stretch.

But why did the price suddenly spike from 9 bucks to a whopping $314 PER PILL? The company that acquired the rights to Cuprimine, Valeant Pharmaceuticals International, felt jacking the price was in the best interest of their shareholders.

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Hey! What about the people who depend on this drug to stay alive and fight Wilson’s disease…don’t they count? Source: www.giphy.com

Mannes’s wife contacted Valeant and they agreed to subsidize the cost for Mannes through January 1, 2017, but offered no explanation as to the hefty price increase.

As for Valeant’s grand plan to deliver value to their stockholders? Well, that’s not going that well. After the New York Times ran an article about Valeant’s habit of price gouging, the Feds are investigating.

And as we used to say, “It’s never good when 60 Minutes shows up at your door.”

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Finally! There is justice in this world! Source: www.giphy.com

Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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