Bridget Bond tried not to cry at the front of the pharmacy line.
The Hoffman Estates mom had just learned three two-packs of EpiPens for her son could cost more than $1,400. The EpiPens could save the life of her 9-year-old, who’s allergic to peanuts and tree nuts.
“I was angry. I felt so taken advantage of,” Bond said of that moment, nearly a year ago. “After nine years of preparing my son and showing him how to take good care of himself, now I have to compromise on what we think is good care.”
She paid more than $950 to buy two sets instead of three, and spent the year stressing about making sure a set was always near.
The price of EpiPens has only grown since then.
Hand-wringing over the cost of EpiPens has become a back-to-school ritual in Illinois and across the country in recent years as the price of the devices has soared. A two-pack of EpiPens had a wholesale pharmacy price of more than $600 in May — up more than 500 percent since early 2008, according to the Elsevier Clinical Solutions’ Gold Standard Drug Database. Consumers are typically charged more than that manufacturer’s wholesale price before insurance and/or cost-saving programs kick in.
The spike has forced parents in Illinois and across the country to hold onto the devices past their expiration dates, carry only one at a time instead of the recommend two, or rely on schools to have extras. Illinois, however, is among a majority of states that don’t require schools to keep their own supply of epinephrine, the drug in the device.
In recent weeks, anger over those increases has spilled onto the national stage with politicians, parents and pundits urging Mylan — the company behind the EpiPen — to lower its prices.
Mylan reacted Thursday, saying it would offer $300 savings cards to patients with private insurance to lower their out-of-pocket costs. It also said it’s expanding eligibility for its patient assistance program, to up to 400 percent of the federal poverty level for uninsured and underinsured patients. That means a family of four making up to $97,200 a year will now get EpiPens at no cost if they lack insurance or have a plan that only covers generic medications.
The moves, however, have done little calm the furor.
“The bottom line is the price needs to be reduced,” said Dr. Sarah Boudreau-Romano, an attending physician in the division of allergy and immunology at Lurie Children’s Hospital, who also has three children with food allergies. “These savings cards won’t necessarily help everybody.”
Bond, the Hoffman Estates mom, that even taking $300 off a $600 price tag, the medication’s cost is still equal to a car payment.
Plus, when insurers have to pay more, the cost gets passed along to consumers through their insurance premiums, said Clare Krusing a spokeswoman for insurance industry group America’s Health Insurance Plans. “We all ultimately end up paying the cost of that drug,” she said.
The EpiPen, when pushed into a person’s outer thigh, delivers a blast of epinephrine that can counter allergic reactions such as breathing trouble, a drop in blood pressure and swelling and hives around the face and lips.
Parents are “spending enormous amounts on a medication they hopefully won’t (need) to use that expires in a year, or they’re simply not able to afford it and depending on someone else’s EpiPen or the school EpiPen to protect them,” Boudreau-Romano said.
But Illinois parents who forgo buying the pricey devices might be out of luck if they’re depending on their schools.
Illinois and 38 other states did not have laws or guidelines requiring schools to stock epinephrine as of July, according to Food Allergy Research & Education, a nonprofit organization that aims to improve the health and quality of life for those with food allergies. Mylan is a corporate sponsor for the organization, but the group’s CEO James Baker said it uses Mylan’s money to support membership activities and does not help Mylan with marketing.
Illinois schools are legally allowed to carry their own epinephrine — and Mylan has a program where schools can get EpiPens for free — but the state hasn’t tracked which schools do.
Chicago Public Schools, for example, keeps its own epinephrine on hand, according to its Office of Student Health and Wellness website. But another district, Wheeling’s Community Consolidated School District 21, does not, said spokeswoman Kara Beach.
Gov. Bruce Rauner signed a bill into law earlier this month that will require schools to report if they stock epinephrine auto-injectors.
There’s no question that when schools do carry EpiPens, kids use them.
During the 2014-2015 school year, 17 Illinois school districts reported administering their own epinephrine 65 times, according to an Illinois State Board of Education report. More than half of the students and staff members who received the drug had not previously been diagnosed with a severe allergy.
Those numbers highlight the importance of the medication, said Jennifer Jobrack, senior national director of advocacy for the food allergy group.
“This is lifesaving medication that sometimes only has minutes to really work and you don’t want to be too far away from it,” Jobrack said. “It’s that simple.”
Jobrack has her own 11-year-old with a peanut allergy. She said she’s been lucky that her insurance covers the devices, requiring only a reasonable co-pay.
Glenview parent Meg Bowman, however, said there have been times when she and her husband wondered if they could wait another month to purchase a new EpiPen set because of the price. Bowman spent about $450 on three kits a few weeks ago, through a mail-order pharmacy, for her 8-year-old son who is allergic to dairy and lentils, among other foods.
Like many families who have children with food allergies, Bowman has multiple sets for different locations, such as the school nurse’s office, her son’s classroom, his school cafeteria, her home and her purse.
“It’s a do or die,” Bowman said. “I have to have it, and I feel like I have to have a certain number of them to keep him safe.”
Mylan says its savings card and patient assistance programs help patients avoid paying the full cost of the device. The drugmaker also has said the proliferation of high-deductible insurance plans is partly to blame for the increasing numbers of patients paying full price for the product.
Critics say there are other factors at play, namely a lack of major competing products.
Sanofi US made a similar device called Auvi-Q, but it recalled the product last year because of potentially inaccurate dosage delivery.
Even if another big competitor were to enter the market with a lower-priced alternative, Mylan could likely just lower its prices to match the competitor’s and hold onto its market share, said Todd Grover, co-founder of Glass Box Analytics, a company that develops drug price benchmarks. That makes it risky for another manufacturer to enter the market, he said.
Mylan’s sales of EpiPens reached $1 billion in 2015 and CEO Heather Bresch received nearly $19 million in total compensation last year, according to regulatory filings — a fact that has further enraged parents and others in recent weeks.
Grover believes public pressure is more likely to drive down the price than a future competitor. Until that happens, families like the Bonds say they’ll continue to grapple with the rising prices because they have to, and will continue to feel taken advantage of by Mylan.
“They know I’m not going to compromise my son’s life,” Bond said.
lschencker@chicagotribune.com
Twitter @lschencker