Iowa families face skyrocketing EpiPen cost

Price has increased hundreds of dollars, prompting lawmakers' concerns

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When Sean Neilly went to pick up his 5-year-old son’s EpiPen at the pharmacy a few weeks ago, he experienced sticker shock.

A two pack of EpiPens — used to inject lifesaving epinephrine if his son, John Patrick, goes into anaphylactic shock — cost more than $600.

That was more than a 500 percent increase from the $100 the Cedar Rapids family paid the last time.

John Patrick is highly allergic to fish and sesame, Neilly said, adding that sesame can be “sneaked” into foods and the family has to be very careful about what their son eats. Neilly called the price increase “immoral,” saying parents who buy EpiPens “have to spend all of this on something you hope you won’t need.”

The family, which was getting ready to go on vacation to Florida, decided not to purchase the drug until it could come up with the money. “We wouldn’t have taken the trip had we known the cost of EpiPens went up this much,” he said.

Neilly isn’t alone. Stories like his prompted U.S. Sen. Chuck Grassley to demand answers from Mylan, the pharmaceutical company that sells the medication.

When Mylan bought the EpiPen developer nine years ago, the pens were selling for about $57 apiece, a review by Bloomberg found. Grassley heard similar complaints from about 50 Iowa families before writing to Mylan chief executive Heather Bresch saying that the steep increase “could limit access to a much-needed medication.”

Since releasing the letter late Monday, Grassley has heard from about 50 more Iowans, he said.

Grassley, chairman of the Senate Judiciary Committee, has been asked to hold hearings on the price hike. He is first waiting to see if Mylan responds.

In a separate letter, Sen. Amy Klobuchar, D-Minnesota, asked the Federal Trade Commission to investigate Mylan’s practices on EpiPen prices. She called for the FTC to look into whether Mylan had done anything to deny competitors access to the market to keep prices up.

Mylan spokeswoman Nina Devlin declined to comment to Bloomberg on the letters. The company said it offers several programs to help people afford the drug, including online coupons for $100 off.

“Ensuring access to epinephrine — the only first-line treatment for anaphylaxis — is a core part of our mission,” she told Bloomberg.

The issue is timely as many families are being surprised as they replenish EpiPens as part of back-to-school preparations. They often get hit twice if they have to supply an EpiPen to their child’s school as well as have one at home.

“That’s not $500 just once,” Grassley said. “They last just a year and then they have to be thrown away and replaced.”

Given the cost, some families may be tempted to hold on to EpiPens beyond their “use by” date. But health care professionals warn the potency diminishes.

Grassley said the impact of the price increase also has implications for taxpayers because schools are required to have EpiPens on hand.

Also concerning to him is the fact that more than 40 percent of children are insured through Medicaid or the Children’s Health Insurance Program. The Iowa version, Hawk-i, covers almost 39,000 children.

“It follows that many of the children who are prescribed EpiPens are covered by Medicaid,” so taxpayers are covering the costs, Grassley wrote in his letter to Mylan.

Some emergency responders already are looking into making their own kits with epinephrine vials and syringes as a way to live within their budgets, Grassley said.

First responders in Seattle, for instance, have developed such kits and sold them to public health agencies in five states. In New York, a demonstration project, Check and Inject New York, trains first responders to use syringe epinephrine kits in place of EpiPens.

It’s one thing for emergency responders to take a do-it-yourself approach, Grassley said, but warned there could be safety implications “as people, untrained in medical procedures, are incentivized to make their own kits from raw materials.”

Bloomberg contributed to this report.

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