Williamsburg retiree details the human cost of high-priced drugs
Talking to her doctor about what to do when the cost of her life-saving medicine jumped more than 14-fold was simply horrifying, retired William and Mary librarian Berna Heyman told a U.S. Senatepanel Wednesday.
"I had been very stable, living a good life," she said in response to Sen.Tim Kaine's question about her decision to go off the Valeant Pharmaceuticals drug Syprine.
"I felt like I was taking a chance and I didn't feel like I had an option other than to take that chance."
Heyman is the human face of Americans dependent on an "orphan drug" – an older, off-patent drug for a rare syndrome snapped up by a drug marketer in order to jack up the price – said Sen. Susan Collins, R-Maine, chair of the Special Committee on Aging.
"You are speaking for so many others," Collins told Heyman at the end of her testimony.
Heyman told the committee she had been paying $700 a year as a copayment for Syprine until 2013. The next year, as Valeant boosted the price, her copayment rose above $10,000 a year and her insurance company was paying more than $260,000.
She needed the drug to treat a rare inherited disorder that causes copper to accumulate in her body. The syndrome, Wilson's disease, keeps a person from eliminating copper, an ingredient in many foods, so that it builds up in the liver, brain and other organs to levels that can be fatal, according to the Mayo Clinic.
"Having Wilson's disease is like being stuck in a tunnel," Heyman told the senators. "This genetic disease is bad enough with its many uncertainties, risks of organ or cognitive failure. But the exit to the tunnel is barricaded because of the obscene drug cost."
Heyman, a retired associate dean of libraries at the College of William and Mary, was diagnosed with the disease in 2005, when she was 60.
After the price of Syprine soared, Heyman twice tried to sign up for Valeant's patient assistance program, and was turned down twice.
The company told her that it needed to charge a high price to cover the cost of researching and developing new drugs and that cutting the cost of her medication bill would violate government rules.
Neither turned out to be the case, said Kaine, D-Virginia.
Heyman said that after she told her story to the financial press — the London-based Financial Times reported about her situation last fall — Valeant offered to enroll her in its patient assistance program.
By then, Heyman had shifted to a different regimen. She's been taking a zinc salt since October 2014. Unlike Syprine, it doesn't extract copper, but instead inhibits absorption.
She and her doctor are still monitoring to see if the treatment is sufficient.
The zinc salt costs her about $480 a year.
"The only reason I changed was the cost, even though none of the cost is covered by my insurance. My health was stable with Syprine and my doctor and I made the change only under duress," she said.
Valeant's strategy of buying rights to older drugs for rare syndromes and raising prices dramatically helped make it a Wall Street high flier, until stories like Heyman's began reaching the public. The company's stock has tumbled from a high of more than $262 last summer to less than $35.
In prepared testimony for the Senate committee, the company's outgoing chief executive officer, Michael Pearson, said the company may have been too aggressive in raising prices.
Board member William Ackman, whose investment firm owns nearly 5 percent of Valeant, told the committee the company would take different approach to pricing its drugs.
During this year's Virginia General Assembly session, reports of medicines that cost tens of thousands a year and that have seen prices double in a year brought promises from two senior state senators to push for more information about the real cost of those drugs.
The promise came after the Senate Education and Health Committee agreed to postpone a vote on a bill requiring pharmaceutical companies to tell the commissioner of health what they spend to develop, advertise and make drugs that cost more than $10,000 for a course of treatment.
There are 58 drugs like that reported in the state's All Payers Claims Database, with costs ranging as high as $139,200 for a blood treatment.
The bill requiring disclosure of high priced drugs' costs pitted some of the most potent interest groups on Capitol Square against one another.
On one side, an alliance led by health insurers, who contributed $792,000 to Virginia politicians in the most recent election cycle, included the retail merchants, hospital and small business associations.
On the other were the pharmaceutical firms, which gave $842,000, warning that the bill would discourage pharmaceutical firms from operating plants in Virginia.
