Jayne O'Donnell, Patti Singer and Shari Rudavsky

USA TODAY Network

The maker of the life-saving allergy shot EpiPen is the new poster child for exorbitant drug price increases, as high-profile members of Congress, doctors and consumers lash out over huge price increases since 2009.

Mylan’s EpiPens are used to quickly treat the severe allergic reaction known as anaphylaxis, which can include swelling of the tongue or throat, shortness of breath and a rash.

The prices insurers and employers negotiate with Mylan are up about 150% since 2013, according to Rx Savings Solutions, which represents businesses and insurance companies. The average wholesale price has increased nearly 500% since 2009, says Michael Rea, a pharmacist and CEO of Rx Savings Solutions.

As outrageous as the EpiPen increases seem, Rea says they aren't that unusual and are getting attention now because parents are stocking up before back to school and are increasingly facing higher out-of-pocket costs due to higher deductibles and cost sharing.

Jackie Davis of Newport News, Va., and her husband, Cory, recently moved from health coverage through the military, which covered all costs for their son Michael's EpiPens and asthma inhalers, to a commercial plan with a $6,000 deductible. Her out-of-pocket cost for his inhaler was $283 and she learned Tuesday that her cost after the coupon for three two-packs of EpiPens is $1,500. She can't afford even one two-pack now.

"For any kind of necessary medicine, you shouldn't have to pay anything," says Davis, who has three other children. "At the very least the insurance should cover it if it's prescribed by your doctor as a life-saving thing."

Consumer outrage prompted at least three senators to call on Mylan to address the high prices, with Senate Judiciary Chairman Chuck Grassley, R-Iowa, demanding documents Monday showing how it can be justified.

Mylan defends its skyrocketing prices by noting in a statement it has given away about 700,000 EpiPens to schools since 2013 and provides coupons that cover the cost of co-payments for most consumers who have commercial insurance.

While that means many people don’t pay anything out of pocket, the high costs are still borne by employers or insurers and passed along to all consumers in the form of higher premiums and deductibles even when they aren’t paying immediately.

The American Academy of Pediatrics (AAP) approved a resolution last year to lobby Congress on EpiPen pricing. Michael Welch, a San Diego allergy doctor who wrote the AAP resolution, says he has been "trying to keep the heat on" Mylan and pressed Mylan President Rajiv Malik in a recent phone call about the prices. Malik stressed the giveaways and co-pay coupons.

"The bottom-line problem is that the price isn't being addressed," says Welch, also a professor at University of California, San Diego School of Medicine.

Massive price increases on EpiPens raise alarm

High deductible insurance plans are designed to get employees to shop smarter and can elicit an outcry over prices that doesn't happen when insurance covers them.

"These plans give employees the tools to make better and more informed decisions on what is best for them and their families, while allowing them to fight back against the ever-rising price of drugs and services," says says Annette Guarisco Fildes, CEO of the ERISA Industry Committee, which represents the largest employers.

The 15% and higher increases in drug prices "collectively drives our overall premium," says Mona Chitre, a pharmacist who is chief pharmacy officer for Excellus BlueCross BlueShield, which serves much of upstate New York. “The insurer (and) the employer is still picking up the cost, and it’s coming through on the premium.”

Elizabeth Matsui, a pediatrician and professor at John Hopkins University School of Medicine, says she has patients with co-pays of $150 to $200 per EpiPen. Indianapolis allergy doctor Tolly Epstein says many of her patients are paying between $600 to $800 out of pocket for EpiPens because they have high deductible insurance plans that do not cover the cost.

EpiPens come in two-dose packs in case a person needs a second shot administered to halt a cascading reaction. Despite this recommendation, many of Epstein’s patients split the two-pack, keeping one at home and one at school, but Matsui notes many schools require parents to have two at school for children with allergies.

"So the cost of a single EpiPen is high already, but when you factor in the need for multiple EpiPens, the cost is exorbitant," says Matsui.

Excellus' Chitre says insurers have more room to negotiate when there is more competition than exists with EpiPen. While epinephrine is more than 100 years old and cost just pennies, it's the EpiPen's injector with its precise measurement that is unique and under patent protection. One competitor had to recall all of its products late last year, and in March another had to delay the introduction of its generic option likely until next year.

Still, Rea says more insurers and doctors should consider the generic form of epinephrine 0.3 mg injectors, which are only about a third of the price. Another product, Adrenaclick, is about $150 cheaper than the EpiPen.

Mylan gradually increased EpiPen's prices, usually twice a year from 9.9% to 15%. That last increase was 15% in May.

Sen. Richard Blumenthal, D-Conn., demanded Monday that Mylan lower the price of EpiPens. Sen. Amy Klobuchar, D-Minn., called on the Federal Trade Commission to investigate.

Only about 5% of people in the United States have experienced anaphylaxis, according to a 2013 medical journal report, but few parents are willing to take the chance with a severely allergic child as students return to school. When Michael Davis was 2, he started vomiting and his throat started closing up in an ambulance after he ate yogurt for the first time. After that experience, Davis wouldn't take any chances with allergies or EpiPens.

"No one want to be the parent who took the chance and didn't pay," says Rea.

After her husband came back from the pharmacy with his two-pack of EpiPens and said the retail price had gone up, Deborah Gillette of Farmington, N.Y., called the pharmacy to know the amount of the increase. She found out the price had jumped from about $350 to $734.99.

“What constitutes something to double?” she wanted to know.

Because of the couple’s insurance, they had a co-pay of only $50. But she wasn’t thinking about their situation.

“If you don’t have insurance or don’t have very good insurance, it’s going to be really hard coming up with that kind of money,” said Gillette, 65.

Adam Linderman of Webster, N.Y., learned he was allergic to bee stings last year but says he may just go without an EpiPen and “hope for the best.”

“A lot of patients are weighing out, 'Can I really afford this? Do I absolutely have to have it?' ” said Epstein, an allergist with Allergy Partners of Central Indiana. “People are making choices that they might not make if the cost were not so high.”

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