For years, Meghan Neri paid $30 each for packets of epinephrine auto-injectors for her two teenagers with food allergies. The price for four life-saving drug packs was $120 per year.
So Neri, 42, of Scituate, Massachusetts, was shocked when, in 2019, her family pharmacist said each packet of auto-injector would cost $600.
His disbursement for the year had skyrocketed to $2,400.
The price of the epinephrine injections themselves had not increased. The problem was that the Neris 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 caught off guard by soaring prices. Some are forced to ration auto-injectors or go without.
“Many families have chosen not to collect their EpiPens because they cannot afford them,” said Dr. Purvi Parikh, allergist and immunologist at NYU Langone Health in New York. “They take the risk that, God forbid, a bad outcome will happen.”
Parikh said families have had to take on more and more financial responsibilities over the past decade, especially as high-deductible insurance plans have become more common.
The Affordable Care Act of 2010 expanded access to health insurance, so companies had to cover more people than ever before. To compensate, insurers “not only increased the cost of coverage, but pushed the patient further in the form of high-deductible plans,” Parikh said. “We’ve seen this every year for at least the past seven to ten years.”
An analysis by KFF, also known as 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. In 2021, it was 50%.
“The average deductible in employer-based health insurance is now over $1,700 per person,” said Larry Levitt, executive vice president of KFF.
With some family plans, deductibles can be well over $3,000.
“What that means is that even when you’re insured, you may not actually be protected against potentially catastrophic health care costs,” Levitt said.
Prescriptions that previously cost no more than about $30 – a basic copayment – are now full price, which can run into the hundreds of dollars.
Some drugs, such as drugs to control high blood pressure, are covered even before the deductible is reached. But epinephrine auto-injectors — which deliver an injection of epinephrine and are the only emergency medication available for life-threatening allergic reactions — usually aren’t.
Few prescription drugs or devices symbolize higher out-of-control healthcare costs than EpiPen.
From 2008 to 2016, pharmaceutical company Mylan raised the price of its auto-injectors by more than 400%, sparking public outrage and scrutiny from Congress.
Other epinephrine-delivering products soon appeared, such as Adrenaclick and Auvi-Q, as well as generics, in hopes of creating prices that more people could afford. It worked, up to a point.
“The amount that privately insured patients had to pay out of pocket has gone down,” said Dr. Kao-Ping Chua, assistant professor of pediatrics at the University of Michigan School of Medicine and Assessment Center. and Susan B. Meister Child Health Research in Ann Arbor, Michigan.
Side effects: learn more about the cost of drugs in the United States
But after switching to a high-deductible plan, some patients like the Neris found they were being charged almost full price for epinephrine auto-injectors.
Neri’s daughter, Shea, 14, is allergic to milk and her son, Thomas, 12, is allergic to milk, peanuts and tree nuts. They don’t leave the house without the devices tucked away in a small fanny pack that they carry around at all times – just in case of exposure.
“You hope it’s wasted medicine and wasted energy,” Neri said.
Injectors are only good for one year on average. The Neri family has to buy four packs of auto-injectors each year for the two children to keep at home and at school. Shea and Thomas each had to use the emergency epinephrine injections.
When the pharmacist informed Neri of the new price for the refills, she was devastated and did not pay the $2,400 that day.
“It was kind of embarrassing to say, ‘I can’t do this right now,'” she said.
The deductibles are intended to discourage the misuse of medical care and the abuse of prescription drugs, Levitt said. But epinephrine auto-injectors save lives.
“Nobody uses them inappropriately,” he said.
Indeed, Neri said auto-injectors are necessary tools to protect her children.
People don’t expect to pay that much when they have health insurance.
Pediatrician Dr. Kao-Ping Chua, University of Michigan Medical School
“It’s not a choice. Nothing about it is a choice,” she said.
Epinephrine is the first line of defense when a person has a severe allergic reaction, called anaphylaxis. When this happens, blood pressure drops. The airways are narrow, making it difficult to breathe. An injection of epinephrine or adrenaline can reverse what could otherwise be fatal.
“For high-value drugs that save lives, 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 one 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 adults, but also because they need multiple auto-injectors to stock at home, at school, and during activities. extracurriculars.
The majority of families paying more than $200 a year in Chua’s study — 62.5% — were enrolled in high-deductible health plans.
“I view this primarily as an insurance benefit design issue,” Chua said. “People don’t expect to pay that much when they have health insurance because they assume the insurance will cover medications.”
Patients may question high prices
“It’s generally up to insurers — and employers in the case of occupational health benefits — whether health 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 co-payments or other out-of-pocket charges for epinephrine on some of its plans.
It’s the only major health insurance company to cover epinephrine so far, but “we’re seeing a growing trend of insurance companies waiving out-of-pocket patient charges for lifesaving drugs.” life,” Levitt said.
Chua said it would be good public policy to limit the cost of other lifesaving drugs as well, 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 such companies, said the drugmakers were to blame.
“We encourage Big Pharma to end their price-gouging tactics and reduce their out-of-control prices for patients,” the group said in a statement to NBC News. “Patients need their life-saving drugs, so a lack of drug choice means Big Pharma has no incentive to agree to lower prices.”
Ultimately, navigating health plans and finding ways to pay for expensive drugs is left to patients.
“The most important thing to know is whether or not they have to pay a drug deductible before insurance coverage happens,” Chua said.
After that day at the pharmacy, Neri took a close look at her family’s health insurance plan and contacted their doctor to discuss other options.
They switched to another brand of emergency epinephrine and are now paying $25 per pack.
“We were going to spend what 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 question the high prices.
“It’s a lot of work,” Levitt said, but “if you’re facing a claim denial, if you’re facing high cost, fight it. Fight it with your healthcare provider, fight do it with your insurance company.
“No almost never means no in health insurance,” he said. “You can often win.”
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