For years, Meghan Neri paid $30 each for packets of epinephrine auto-injectors for her two teenage children with food allergies. The price for four packs of the life-saving drug was a reasonable $120 a year.

So Neri, 42, of Scituate, Massachusetts, was shocked when, in 2019, her family’s pharmacist said each pack of auto-injector would cost $600.

His out-of-pocket cost for the year had skyrocketed to $2,400.

The price of epinephrine injections had not gone up. The problem was that the Nerises had switched to a new high-deductible health insurance plan to save money. Monthly payments are lower with high-deductible programs, but families must pay thousands of dollars each year before many costs, often including epi auto-injectors, are covered.

Like the Neris, many families are surprised by the price increase. Some are forced to ration auto-injectors or go without.

The Neri family of Scituate, Massachusetts.
The Neri family of Scituate, Massachusetts.Courtesy Neri family

“Many families have chosen not to pick up their EpiPens because they can’t afford them,” said Dr. Purvi Parikh, an allergist and immunologist at NYU Langone Health in New York City. «They are taking the risk that, God forbid, there will be a bad result.»

Parikh said families have had to shoulder more and more financial responsibilities over the past decade, particularly as high-deductible insurance plans have become more common.

The Affordable Care Act of 2010 expanded access to health insurance, forcing companies to cover more people than ever before. To compensate, insurers “not only increased the cost of coverage, but they gave more to the patient in the form of high-deductible plans,” Parikh said. «We’ve been seeing this every year for at least the last seven to 10 years.»

A analysis by KFF, also known as the Kaiser Family Foundation, found that in 2009, 17% of workers were enrolled in a health plan with an annual deductible of at least $1,000. By 2021, it was 50%.

“The average deductible on employer-based health insurance is now more than $1,700 per person,” said Larry Levitt, KFF executive vice president.

With some family plans, deductibles can exceed $3,000.

“What it means is that even when you are insured, you may not actually be protected from potentially catastrophic health care costs,” Levitt said.

Prescription drugs that previously cost no more than about $30 (a basic copay) are now full price, which can be in the hundreds of dollars.

Some medications, such as medications to control high blood pressure, are covered even before the deductible is met. But epinephrine auto-injectors, which deliver a shot of epinephrine and are the only emergency medicine available for life-threatening allergic reactions, usually aren’t.

Few prescription drugs or devices symbolize out-of-control healthcare costs more than the EpiPen.

EpiPens.
EpiPens.File by Joe Raedle/Getty Images

From 2008 to 2016, the pharmaceutical company Mylan increased the price of its auto-injectors by more than 400%, sparking public outrage and congressional scrutiny.

Other products that deliver epinephrine, such as Adrenaclick and Auvi-Q, soon emerged along with generics, hoping to create prices more people could afford. It worked, up to a point.

«The amount that patients with private insurance had to pay out-of-pocket decreased,» said Dr. Kao-Ping Chua, an assistant professor of pediatrics at the University of Michigan Medical School and Center for Research and Evaluation of Susan B. Meister Children’s Health in Ann Arbor, Michigan.

Side Effects: Learn more about drug costs in the US.

But after switching to a high-deductible plan, some patients like the Neris found they were being charged nearly full price for epinephrine auto-injectors.

Neri’s daughter, Shea, 14, has a milk allergy, and her son, Thomas, 12, is allergic to milk, peanuts and tree nuts. They don’t leave the house without the devices stored in a small fanny pack that they wear at all times, in case of exposure.

“You hope it’s wasted medicine and energy,” Neri said.

The injectors are only good for one year, on average. The Neri family must buy four packs of auto-injectors for the two children each year to keep at home and schools. Shea and Thomas have had to use emergency epinephrine injections.

When the pharmacist told Neri the new price for the refills, she was devastated and didn’t pay the $2,400 that day.

“It was a bit embarrassing to say, ‘I can’t do this right now,’” she said.

Deductibles are meant to discourage healthcare misuse and prescription drug abuse, Levitt said. But epinephrine auto-injectors save people’s lives.

“No one is using them inappropriately,” he said.

In fact, Neri said that auto-injectors are necessary tools to protect her children.

People don’t expect to pay as much when they have health insurance.

Pediatrician Dr. Kao-Ping Chua, University of Michigan Medical School

“This is not an election. None of this is a choice,” she said.

Epinephrine is the first line of defense when a person has a allergic reaction, called anaphylaxis. When this occurs, blood pressure plummets. The airways narrow, making it difficult to breathe. A shot of epinephrine, or adrenaline, can reverse what could otherwise be deadly.

“For high-value, life-saving drugs, there should be no out-of-pocket cost,” said Chua, of the University of Michigan.

Chua has spent years studying how much families pay for emergency epinephrine. he led a study published in July that found that 1 in 13 patients paid more than $200 a year for their epinephrine auto-injectors.

Most were children, partly because allergies are more common in children than in adults, but also because they need multiple auto-injectors to store at home, at school, and during extracurricular activities.

The majority of families paying more than $200 a year in Chua’s study (62.5%) were enrolled in high-deductible health plans.

“I see this primarily as an insurance benefit design issue,” Chua said. «People don’t expect to pay as much when they have health insurance because they assume the insurance will cover the drug.»

Patients may question the high prices

“It’s usually up to insurers, and employers in the case of workplace health benefits, whether health care services and drugs are exempt from the deductible,” Levitt said.

Health insurance companies could exempt epinephrine auto-injectors from their high deductibles. UnitedHealthcare announced that, starting next year, there will be no copay or other out-of-pocket costs for epinephrine in some of its plans.

It’s the only major health insurance company to cover epinephrine so far, but «we’re seeing more and more of a trend toward insurance companies waiving out-of-pocket costs to patients for life-saving drugs,» Levitt said. .

Chua said it would be good public policy to also limit the cost of other life-saving drugs, such as insulin for diabetes and naloxone to reverse opioid overdoses.

But AHIP (formerly known as America’s Health Insurance Plans), a group that represents those companies, said the drugmakers are to blame.

“We encourage Big Pharma to end its price gouging tactics and lower its out-of-control prices for patients,” the group said in a statement to NBC News. «Patients need the drugs that save their lives, so the lack of drug choice means Big Pharma has no incentive to accept lower prices.»

Ultimately, navigating health plans and struggling to find ways to pay for expensive drugs is left up to the patients.

“The most important thing to know is whether or not they have to pay a deductible for drugs before insurance coverage kicks in,” Chua said.

After that day at the pharmacy, Neri took a hard look at her family’s health insurance plan and contacted her doctor to discuss other options.

They switched to a different brand of emergency epinephrine and are now paying $25 per pack.

“We were going to spend whatever we needed to keep them safe,” Neri said. «But it helps to have enough information to make an informed decision and not feel like you’re wasting money unnecessarily.»

Levitt said patients should feel empowered to challenge high prices.

“It’s a lot of work,” Levitt said, but “if you’re facing a claim denial, if you’re facing a high cost, fight it. Fight with your healthcare provider, fight with your insurance company.”

“No almost never means no on health insurance,” he said. «You can often win.»

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