Prescription Drug Costs Soar for Oregon Woman Fighting Fatal Disease

A family is seeing their medication costs soar into the thousands of dollars.

Dallas, OR (KGW) - A Dallas, Oregon woman says the medication she needs in order to live has skyrocketed in price and she can't afford it.

Susan Evans relies on Syprine to treat Wilson’s disease. It’s a rare condition that means her body doesn’t get rid of copper like it should. It could be fatal if she doesn’t take her medication.

“The copper will literally eat my body alive and I will die,” said Evans.

She said to avoid complications, she has to take four pills every day.

Evans has been worried sick ever since Tuesday, when she got a phone call from her pharmacy telling her the cost of her medication went up. She said she became panicked and started crying.

“I can't afford that. I cannot afford that. Every single month to pay over $5,000, we already pay $3,800 a month for health insurance,” said Evans.

For years she's paid $35 a month for her prescription, but now the price tag is just too high.

“To add over $5,000 [to the] life-saving medication that I have to take, there's just no way,” she said.

Evans said she’s tried other medications, but Syprine is the only treatment that works for her. Adding to her worry and stress, is the looming knowledge that she's about to run out of her medication.

“I have two days left. Today, tomorrow, and the next day and that's it. Then I'll be out,” Evans said.

She said her insurance company, Regence, changed her policy due to the Affordable Care Act.

Timira Cobbs, a spokesperson for Regence said in an emailed statement, “We are committed to working on behalf of our members to secure the most effective and affordable pharmacy benefits. Due to privacy laws, we cannot comment on a specific individual’s experience; however, we are reaching out to determine the best path forward for this member.”

Evans said she believes Valeant Pharmaceuticals, the company manufacturing her medicine, is price gouging.

“Nobody should have to pay that. Nobody should charge that,” she said. 

A 2015 study in the Hepatology medical journal found the average cost of Syprine is about $300,000 for a year's worth. It also reported that at the time of the study, Syprine was about $200 per 250 mg pill. Compare that to the original cost of $1 for the same pill, a price that was maintained for about 20 years by Merck, the original manufacturer. The study said the rights to manufacture the drug has switched hands twice since the year 2000 and it called Syprine “the most costly treatment for any liver disease to date.”

KGW reached out to Valeant Pharmaceuticals. A spokesperson said the company has two patient assistance programs that could help Evans.

“The first is a co-pay assistance program under which commercially insured patients will pay no more than $25 per month for their prescription. The second patient assistance program is for patients without insurance (commercial or federal), with a household income < 500% FPL. These patients will receive free medication each month,” Lainie Keller, the spokesperson for Valeant Pharmaceuticals, wrote in an emailed statement.

Keller said in 2016, the company formed the Patient Access and Pricing Committee to make sure patients are able to access medication.

We told Evans about that patient assistance program. She called Valeant and said she won't find out if she qualifies until Wednesday.

A 2016 U.S. Senate investigation into prescription drug cost spikes found, in part, that not all people qualify for patient assistance programs, and some still had substantial out-of-pocket costs. It also discovered that within five years (between June of 2010 until July of 2015), the cost of Syprine shot up from about $652 to more than $21,000. That's a cumulative increase of more than 3000%.

The Senate investigation looked into four different pharmaceutical companies. One of them was Valeant Pharmaceuticals International, Inc.

"The Committee discovered that each of the four companies followed a business model (with some variation) that enabled them to identify and acquire off-patent sole-source drugs over which they could exercise de facto monopoly pricing power, and then impose and protect astronomical price increases," wrote the authors of the investigation conducted by the Special Committee on Aging.

Recently the rising out-of-pocket costs of prescription medication has been a hot-button issue. People relying on medications such as EpiPens or insulin have also said they've seen their costs go up as well.

© 2018 KGW-TV


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