New proposed federal legislation seeks to lower the cost of epinephrine auto-injectors significantly for Americans managing food and other allergies. Congressman Maxwell Alejandro Frost has introduced a bill that would cap out-of-pocket costs for a two-pack of auto-injector devices at $60 for patients with insurance.
“As someone who has suffered a life-threatening allergic reaction, I know first-hand how critical it is to have access to an EpiPen or an auto-injector when your body needs it most,” Frost says.
Frost, the Central Florida representative, has lived with multiple food allergies his whole life. He tells Allergic Living that he required three doses of epinephrine a few years ago when he experienced an anaphylactic reaction. After eating pizza at a potluck, he said to someone how good this usually allergy-safe type of slice tasted. He asked what was in the pizza. It turned out to contain a food he’s allergic to. Soon, he developed a frightening anaphylactic reaction.
Frost has teamed up with California Congresswoman Doris Matsui, a fellow Democrat, on the “EPIPEN Act” (Epinephrine’s Pharma Inflated Price Ends Now Act). The pair introduced the legislation on January 11, 2024, noting that allergy patients face both escalating auto-injector costs and often higher insurance deductibles.
The nonprofit Food Allergy Research and Education (FARE) endorses the proposed cost-cutting act. FARE CEO Sung Poblete says the nonprofit will work to help move the bill forward on Capitol Hill.
“We are thrilled that Rep. Frost, a member of the food-allergic community, took action,” says Jason Linde, FARE’s senior vice president for advocacy. These efforts “address a problem impacting millions of Americans who struggle to afford the only medicine that can save their lives,” he says.
A few states have already capped epinephrine costs. But Frost says, “federal legislation is still needed to lower costs nationwide.”
Costs and Expired Auto-Injectors
One of Frost’s big concerns is that the cost of epinephrine auto-injectors is preventing many patients from carrying the lifesaving medication. Or, they resort to carrying expired auto-injectors because they can’t afford them, he says.
He knows the cost struggle firsthand. The evening of his big pizza reaction, Frost initially took Benadryl. But he soon realized he needed his auto-injector, something he hadn’t required since childhood. That night, he tells Allergic Living, he had one expired EpiPen auto-injector with him.
His face was swelling, his throat was closing, and he was having difficulty breathing. Frost used the auto-injector, and told someone to call 911. Frost felt relief as his throat opened up. The EMTs arrived and gave him another dose of epinephrine, since the reaction was still in progress.
“I could have died if we didn’t call 911,” he notes – because he didn’t have another auto-injector. He needed a third dose of epinephrine while at the hospital.
The reaction left him shaken, and afraid to eat for months. He realized that not having medication that is needed, affects people physically and mentally.
Frost, who now always carries two auto-injectors, wants to make sure that epinephrine is accessible and affordable with the bill he has introduced. “This is about keeping people alive,” he says.
Insurance and Epi Auto-Injectors
The allergy community has faced high costs for epinephrine auto-injectors at retail for several years. In 2016, consumers were met with a huge price increase when two-packs of EpiPen brand auto-injectors reached more than $600.
Mylan NV (now Viatris), which marketed the EpiPen, came under fire. The uproar in 2016 included a congressional committee questioning Mylan’s former CEO over why EpiPen’s price had soared more than 500 percent price from 2008. While EpiPen is also available in a less expensive generic, FARE cites examples today of EpiPen two-pack prices sometimes exceeding $700 in pharmacies.
Research examining consumer spending on epinephrine auto-injectors points to both high drug prices and health insurance plans with inadequate coverage. A July 2022 study found 1 in 13 privately insured patients were paying more than $200 a year for epinephrine auto-injectors. Among those families, 62.5 percent were enrolled in high-deductible health plans.
As of 2022, 32 percent of Americans with employer-sponsored insurance had an annual deductible of $2,000 or more, according to KFF, the nonprofit health policy organization.
FARE notes that could mean families must pay for two sets of epinephrine auto-injectors out of pocket before meeting their insurance deductible. Linde cites an example of a family with a school-age child with a food allergy who needs two sets of auto-injectors – one for home and one for school.
“Their total cost is $1,400 which in many areas of the country is equal to or more than a family’s mortgage payment,” he says in FARE’s statement.
Yet at least one large insurer has taken action to lessen the burden on patients. United Healthcare has eliminated out-of-pocket costs for epinephrine and other lifesaving drugs, including insulin and albuterol, under certain plans.
What Price Cap Bill Will Do
Frost’s bill is meant to address the out-of-pocket costs that can be a big burden, even with less expensive generic auto-injectors and other brands available.
He tells Allergic Living that many people in the allergy community get used to carrying an expired lifesaving medication, like he did, because of cost. For example, one family told him about their mom who needed to carry epinephrine for her severe bee allergy. She always carried an expired auto-injector, a source of anxiety for her and her family, Frost says.
“It’s time the federal government looked out for working families and capped these prices,” he says.
The proposed act requires employer-based or individually purchased insurance to cover a two-pack of epinephrine auto-injectors:
- Without applying a deductible.
- The cost to the insured cannot exceed $60.
While the proposed legislation would cap epinephrine costs at the national level, some states have passed their own laws to address the issue. Illinois, Colorado, New Jersey and Rhode Island are the states that passed legislation in 2023 requiring price caps on epinephrine auto-injectors. Colorado’s law went into effect January 1, 2024.
The proposed federal bill does not impact the current state laws “other than to echo that this a nationwide problem our community faces,” Linde says.
What’s Next for Epi Cap Bill
Linde says the proposed epinephrine price cap law will need lots of support to move forward. “Our community needs to come together and do the heavy-lifting required to build support for this bill one member of Congress at a time,” he says.
Frost would like to have bipartisan support for the legislation, so that it is more likely to get on the House floor for consideration. “It’s not about party, it’s about life or death,” Frost says.
He encourages readers to contact your members of Congress to ask them to co-sponsor the act.
Linde encourages food allergy community members who want to support the legislative efforts to participate in FARE’s Courage at Congress 2024: Advocate for a Cure lobbying event slated for March 2024. Participants can meet with House members on Capitol Hill to ask them to cosponsor the act.