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Iowan's pills, which were free, could soon cost $375,000 a year

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4.5 from 2 votes
Wednesday, February 06, 2019

WELLMAN, Iowa - Rebecca Hovde was stunned to learn the vital medication she had received for free could soon cost $375,000 per year.

Hovde, who lives in the eastern Iowa town of Wellman, has a rare autoimmune disease that causes extreme fatigue and weakness. The condition, Lambert-Eaton Myasthenic Syndrome, interferes with messages that nerves send to muscles.

For the past two years, Hovde controlled her condition with pills she received for free from a New Jersey company, Jacobus Pharmaceuticals. The company decided years ago to give the medication away to hundreds of patients rather than undertake expensive clinical trials to have it approved for sale by the Food and Drug Administration.

The pills worked wonderfully for Hovde. It helped her regain strength to participate in the lives of her two teenagers and return to part-time office work. "It truly is a miracle drug," she said.

But the miracle could soon become costly.

A Florida drug company, Catalyst Pharmaceuticals, bought the American rights to market a very similar drug, which is already is sold in Europe. Catalyst did studies necessary to gain federal approval.

In December, the Food and Drug Administration granted Catalyst "orphan drug" status for the medication. That meant the company would have exclusive rights to sell it in the United States for seven years. Jacobus Pharmaceuticals, which had been giving its version away for free, would no longer be allowed to do so.

Catalyst disclosed in December that it planned to charge an average of $375,000 per year for its version of the new drug, which it's calling Firdapse.

Hovde said she's willing to pay something for her medication, but $375,000 is triple what her house is worth. She hasn't heard yet if her health-insurer, Medica, will cover the new drug. Even if insurance plans and public health programs cover it, those costs would eventually have to be made up in higher insurance premiums and taxes, she said. "It's going to affect everyone," she said.

Hovde said Catalyst Pharmaceuticals gave her a 30-day supply of the new pills, but she's unsure how she'll get them after that. "If I can't get my medication, I won't be able to breathe, and I'll wind up being hospitalized," she said.

Her uncle, who lives in Vermont, contacted U.S. Sen. Bernie Sanders and asked him to talk to Hovde. The Vermont senator spoke to her via video last week. She told him the situation was desperate.

"Many people are even saying they're going to give up. That breaks my heart," she said.

Sanders, who is considering a second run for the Democratic nomination for president, drew a national spotlight to the situation. On Monday, Sanders released a sharp letter that he wrote to Catalyst about its plans for the drug.

"Catalyst's decision to set the annual list price at $375,000 is not only a blatant fleecing of American taxpayers but is also an immoral exploitation of patients who need this medication. Simply put, it is corporate greed," the senator wrote to the company.

Sanders asked how the company could justify the price increase.

Sanders is one of many politicians expressing outrage over the fast-rising prices for prescription drugs. Many potential Democratic candidates for president have talked about the issue, and President Donald Trump was expected to raise it again in his State of the Union address Tuesday night.

Catalyst Pharmaceuticals' stock dropped several points after Sanders released his critical letter.

The company released a statement Monday afternoon saying that its "top priority" was to improve patient care. "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 (Lambert-Eaton Myasthenic Syndrome), facilitate accurate and timely diagnosis, and broaden affordable patient access to an FDA-approved treatment," the statement said.

A spokesman for the company said most patients would be expected to only face a $10 co-pay for the medication, once their insurers covered the rest. He said more patients would be able to use the new drug than managed to obtain the old one for free.

Hovde's health-insurer, Medica, said that as an FDA-approved drug, Firdapse should be eligible for coverage. The company is reviewing the issue and will decide how to cover it, Medica spokesman Greg Bury said Tuesday. But Medica is unhappy about the situation, its spokesman said.

"Charging $375,000 a year for a drug that a different company could manufacture and give away for free is outrageous," Bury wrote in an email to the Register. "Catalyst is following the rules, but the rules are set up to protect Catalyst and not consumers."

He added that such costs ultimately would lead to higher insurance premiums.

Author: Tony Leys
Source: Des Moines Register
4.5
4.5 from 2 votes
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