For being just 14 years old, Jackson Pugh is really responsible. He and his younger sister have a life-threatening allergy to peanuts.
“I usually know, like, what I can and can't have. and I always make sure to read the label,” he said.
He also knows firsthand that one slip-up can be costly. At a Christmas Eve party a couple years ago, Jackson ate a single piece of candy and immediately started to have a reaction.
“They administered the EpiPen, and then they were, like, debating on whether to call an ambulance to come pick me up or just drive me there. But eventually, they decided to drive me there because it'd be quicker,” Jackson said.
Both Jackson and his sister require epinephrine auto-injectors for their allergy. Their mother, Keri, says that can be expensive since they have to leave one at school and carry another with them throughout the day.
“Even with insurance, sometimes with coupons, I figured that we spend about three to five hundred dollars every year per kid on EpiPens. So, while it's gotten better, we still buffer for that cost, and stock expired medications to keep on hand to avoid having to spend any more on this medication,” Keri said.
Because the medication is so expensive, Keri worries about giving EpiPens to her kids, since they could lose it or break the pin of the auto-injector. The medication also expires and needs to be replaced every year.
Keri estimates that her family has spent around $15,000 on EpiPens over the years.
“These are monies that we could have put towards college savings, retirement savings. And being a small business owner, we could have invested those dollars back into our local business,” she said.
The family is far from alone. According to estimates from the Community Economic Defense Project (CEDP), nearly 566,000 people in Colorado have a life-threatening food allergy, including more than 100,000 kids under the age of 18.
The average cost of name brand EpiPens has also increased significantly over the years, going from roughly $90 in 2006 to $690 in 2022, despite the fact that it still costs about $8 to create, according to CEDP.
“It now costs 43 times more to buy an EpiPen than it costs to make an EpiPen. That's that 660% price increase. And you know, as folks have talked about here, families have to make impossible choices,” said Sam Gilman, one of the founders of CEDP, who also has a life-threatening allergy.
The high costs have inspired lawmakers to come up with a bill to help. House Bill 23-1002 would cap the cost of a two-pack of epinephrine auto-injectors at $60 starting in 2024.
Those who qualify for the cap include people who are residents of Colorado, not enrolled in state or federal Medicaid programs, have a prescription for the medication and are not enrolled in a prescription drug plan that limits the total amount of cost sharing that person is required to pay.
People who need an EpiPen would be charged the $60, then the pharmacy distributing the medication would seek reimbursement from the manufacturer for the remainder of the cost. Manufacturers who do not comply will be subjected to $10,000 in fines per month as long as they are non-compliant.
The bill would also create an affordability program for those who cannot afford their medications. Those on Medicare and Medicaid would instead go through this program for the savings.
“We believe that those who are trying to access life-saving medication like EpiPens should not be subjected to unlimited price gouging and monopolization that puts this life-saving medication out of reach,” said Rep. Javier Mabrey, D-Denver.
While campaigning for the November 2022 election, Mabrey says he met a school nurse in his district who spoke at length about the issue. The nurse told Mabrey she’s hesitant to administer epinephrine because she knows what it will cost the parents.
Mabrey represents portions of Denver where a majority of the constituents are minorities and not as economically advantaged. He and his fellow bill co-sponsors believe this piece of legislation will have a big impact for families.
At its first committee hearing, however, critics said this bill could have unintended consequences on health care premiums, among other things.
“As a whole, we are against any kind of artificial cap on products or benefit coming from the legislature,” said Brandon Arnold, the associate director of the Colorado Association of Health Plans. “With the way the bill is crafted now, all putting a cap on the copay does is move the exorbitant prices that the manufacturer is charging for the drug at the counter to wrapped into premiums for all Coloradans.”
While Arnold says the bill would significantly lower costs for people who don’t have insurance, he anticipates higher overall health care premiums if this legislation is passed. Instead, he would like to see this process handled more internally with the Division of Insurance.
Another concern is the cost for families on a high deductible health insurance plan that has a health savings account. Because of IRS rules, Arnold says families will have to reach their deductibles first before the cap for the EpiPen can apply to them.
He also points out that there are a number of generic brands that are much cheaper than EpiPens themselves and readily available.
Arnold insists that health insurance carriers want to help reduce costs for families, he just doesn’t believe this is the way to do it.
In a statement, Hannah Loiacono, the senior manager of public affairs for PHRMA, said they support the intention of the bill and bringing down cost barriers for patients.
“However, this proposal also directs manufacturers to provide the auto-injectors to pharmacies without compensation, instead of addressing a faulty system that stands in the way of common-sense solutions known to help patients afford their medicines,” the statement read.
Meanwhile, the Colorado Pharmacists society said in a statement it has concerns with how this policy will be implemented.
“As an association, we also want to make sure that implementation of such a policy would be seamless and work for our pharmacies and patients alike without undue red tape or operational burden. We need to make sure that the reimbursement of the cost of the Epi or the replacement supply in kind process works well, so that our frontline pharmacies are not out of their own pocket money providing this service,” Emily Zadvorny, the executive director of CPS, said in a statement.
Nevertheless, the bill passed unanimously out of its first committee hearing Friday. It comes four years after Colorado legislators passed a law to cap the costs of insulin starting in 2022.