South suburban father outraged over EpiPen costs for daughter

Brian Bernardoni of south suburban Justice says he will spend more than $1,800 on EpiPens this year for his 9-year-old daughter.

Cecilia, who is allergic to peanuts and eggs, needs to keep three of the devices close at hand. She carries a package with her at all times, keeps one in her classroom at school, and another one is kept with the school nurse, her father said.

The devices are only available in packages of two, which cost more than $600 each. Doses are only good for a year at most, so users must replenish supplies annually.

"Our daughter's food allergies changed our lives," Bernardoni said. "It's a tough thing. If a kid leaves (an EpiPen) in the back of a van on a hot day, it's no good."

An EpiPen is an injector that contains about $1 worth of epinephrine. The medicine counteracts chemicals released by a person's immune system when exposed to an allergen, like a bee sting or, in Cecilia's case, peanuts or eggs.

Without immediate treatment, exposure can lead to anaphylaxis, a potentially life-threatening allergic reaction.

Mylan, the pharmaceutical company that acquired the patent for EpiPen, is facing criticism for hiking the price from less than $100 in 2009 to more than $600 today without changing the product.

"It's repugnant," Bernardoni says of the price hike. "Epinephrine saves lives. When you start gouging families … that's a big hit."

Bernardoni, senior director of government affairs and public policy for the Chicago Association of Realtors, says his family's insurance plan carries a high deductible. That means his family pays out-of-pocket for Cecilia's EpiPens.

"Others don't have a job like me and can't afford it," he said.

Bernardoni advocated on behalf of Cecilia and lobbied the Illinois General Assembly, which passed legislation in 2014 allowing school nurses and others to administer epinephrine. Cecilia stood next to then-Gov. Patrick Quinn when he signed the law.

The advocacy group Food Allergy Research and Education (FARE) issued a statement Wednesday saying many families restock epinephrine supplies when children return to school and are just now learning of the increased personal costs.

"FARE believes no individual in need of epinephrine should ever be without this life-saving drug due to a lack of affordable access to the drug. Even a single life lost due to lack of access to this drug is one life too many," the group said.

FARE said another brand of auto-injector (Auvi-Q) was withdrawn from the market late last year, and the U.S. Food and Drug Administration recently rejected applications by two others manufacturers (Teva and Adamis) to introduce products.

"(Mylan) now has a de facto monopoly," Bernardoni told me. "It's rampant profiteering."

The EpiPen price controversy this week triggered heated debate on a variety of topics, including pharmaceutical company profits, CEO compensation, government oversight of medicine, the coziness of lobbyists and lawmakers, corporate tax-dodging, insurance company coverage of drugs, the complexity of the American health care system, and even the integrity of higher education.

Mylan CEO Heather Bresch told CNBC Thursday that outraged consumers should direct their anger toward the "broken" health care system.

"This system needs to be fixed. No one knows what anything costs," she told CNBC.

Mylan turned a profit of nearly $850 million in 2015 on revenue of nearly $9.5 billion, USA Today reported. EpiPen is by far the company's most profitable product, with an operating margin of about 55 percent, USA Today said.

Amid the uproar over the EpiPen price hikes, Mylan said Thursday it would make the devices more affordable for some patients. The company said it would provide $300 discounts to patients like Cecilia whose families have to pay the full price for the drug out of pocket.

Bresch is the target of much of the criticism. Her total annual compensation as CEO has increased 671 percent in recent years to nearly $19 million, Forbes and others reported. She's the daughter of U.S. Sen. Joe Manchin, D- W.Va.

Mylan moved its corporate headquarters overseas in a maneuver known as inversion, news outlets like the L.A. Times noted. The newspaper published a column headlined, "Another reason to hate Mylan, which jacked up the price of life-saving EpiPens: It's a tax dodger."

The CEO was the center of a scandal in 2008 after she was named the head of Mylan. Following an investigation, West Virginia University stripped herof an MBA she claimed she earned. Three top officials of the university resigned.

As Business Insider reported, the Pittsburgh Post-Gazette broke the story with a routine call to verify Bresch's credentials. An investigation by the newspaper uncovered that West Virginia University awarded Bresch the MBA only after rewriting documents that originally showed she completed about half the credits needed for the degree.

Manchin, the senator and CEO's father, was governor of West Virginia at the time. The Post-Gazette's inquiry also revealed Bresch attended high school with WVU President Mike Garrison, and that the college's largest benefactor, Milan Puskar, was Mylan chairman.

Following the newspaper's investigation, the university commissioned a panel that concluded Bresch did not earn an MBA. The university president, provost and business school dean all resigned.

Bresch lost her degree, but kept her job. She weathered the scandal, and her company went on to hike the price of life-saving EpiPens by more than 500 percent.

It's no wonder parents like Bernardoni are outraged.

"This is not a vanity drug," he said. "This is like the fire department charging a family to turn on the water before they'll put out a fire at their home."

Twitter @tedslowik

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