When Amber Cobbs sends her two boys to school, she crosses her fingers and hopes they don’t encounter anything that they’re severely allergic to.
She, her two sons — ages 5 and 9 — and her 3-year-old twins all have life-threatening allergies and have been ordered to carry EpiPens. But sky-high prices for the auto injectors, filled with the hormone epinephrine, have prevented the Tucson family from being able to purchase them.
The pens are used to treat anaphylaxis — a severe allergic reaction that comes on quickly and can include symptoms like difficulty breathing, closing of the throat, weak pulse, passing out and vomiting.
Since 2007, the cost of a pair of EpiPens has increased from less than $100 to about $600. The short shelf life of the medicine requires users to buy a new pair of pens every year.
“I’ve been trying to find coupons. I went online and filled out a form to get cheap EpiPens and it ended up being a scam,” Cobbs said. “I have people calling my phone all day trying to sell me illegal medicine. It’s been a horrible experience.”
Cobbs has been prescribed EpiPens since she was 15 years old and her children have needed them since age 2; but she and her husband haven’t been able to save enough over the last six months to get their prescriptions filled.
Their family isn’t alone. The price is a burden on families across the country and immediate action is needed, the American Academy of Pediatrics says.
“The high cost of these devices imposes a significant financial burden on families and places an obstacle in these patients’ access to lifesaving medical care where they live, learn and play,” the academy said last week.
“Urgent solutions are needed. Now is the time for all interested stakeholders — families, doctors, manufacturers, distributors, payers and government agencies like the Food and Drug Administration — to act quickly to alleviate the financial hardships faced by families.”
Three years ago, then-Arizona Gov. Jan Brewer signed a bill into law calling for the legislature to provide money for schools to stock four EpiPens — two child doses and two adult doses — if the budget allows. But schools have never received state funds for that purpose.
Instead, Tucson’s largest school district, which serves more than 47,000 students, relies on a program by the maker of the drug that provides EpiPens for free to stock its 80-plus campuses.
“Our nurses have been getting calls from parents who can’t afford the EpiPens and are reassured to hear that we have them,” said TUSD spokeswoman Stefanie Boe.
This year alone, three students have been saved by staff members who have been trained on how to administer the medication in an emergency, Boe said.
Last year, nine students made use of the free auto injectors. The Amphitheater, Sunnyside and Tanque Verde districts also participate in the EpiPen4Schools program.
However, the Marana School District, where Cobbs’ sons attend, does not. It — along with Catalina Foothills, Flowing Wells and Vail — relies on parents to provide the medication for safe keeping with the school nurse. The Sahuarita School District also relies on parents but has a few stocked in case of emergency.
Cobbs’ oldest son, on one occasion, had to be rushed to the hospital when Benadryl wasn’t enough to ease his symptoms from an allergic reaction. The same has happened to her.
In both cases, she had EpiPens — but they had expired.
“It’s really scary,” she said. “They say sometimes they’ll still work but it’s so scary taking that leap and administering that and not knowing what the reaction will be. You don’t know if it’s going to be dangerous or if it will even work so we just try to hurry up and get to an emergency room.”
For Cobbs’ family, and many others, shelling out hundreds of dollars for medication isn’t an option.
“I think the pharmaceutical companies know this is something people have to have so they can put whatever price tag on it and it will sell,” she said. “That’s so unfortunate that they’re charging so much for something that costs so little and that could possibly end up, God forbid, taking one of my children’s lives or my own.”