By Erika Edwards, Tonya Bauer and Anne Thompson -
NBC News
For years, Meghan Neri paid $30 per pack of epinephrine auto-injectors for her two teenage children with food allergies.
The price for four packs of this life-saving drug was an affordable $120 per year.
So Neri, 42, of Scituate, Massachusetts, was surprised when, in 2019, her primary pharmacist told her that each package would now cost $600.
Her annual budget skyrocketed to $2,400.
The price of the epinephrine injections themselves 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 epinephrine auto-injectors — are covered.
The Neri family has two children who are allergic to different foods, forcing them to always carry epinephrine auto-injectors with them. via NBC News
Like the Neris, many families are caught off guard by the increase in the price of certain drugs.
Some are forced to ration auto-injectors or do without them.
“Many families have chosen not to pick up their EpiPens because they can't afford it,” said Dr. Purvi Parikh, an allergist and immunologist at NYU Langone Health in New York.
"They are taking the risk that, God forbid, a misfortune will happen."
Parikh says
families have had to shoulder more and more financial responsibilities in the last decade,
particularly as high-deductible insurance plans have become more common.
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The Affordable Care Act of 2010 expanded access to health insurance, so companies had to cover more people than ever before.
To compensate, insurers “have not only increased what it costs to be covered, but have passed more of that on to the patient in the form of high-deductible plans,” Parikh explained.
"We've seen it every year for at least the last seven or 10 years."
Insurers “not only increased what it costs to be covered, but have passed more of that on to the patient in the form of high-deductible plans”
DR Purvi Parikh, IMMUNOLOGIST, NYU LANGONE
An analysis by the Kaiser Family Foundation (KFF) revealed that in 2009, 17% of workers were enrolled in a health plan with an annual deductible of at least $1,000.
In 2021, it will be 50%.
“The average deductible on employer-based health insurance is now more than $1,700 per person,” explains Larry Levitt, executive vice president of the KFF.
In some family plans, deductibles can exceed $3,000.
“What this means is that even if you are insured, you may not be protected against potentially catastrophic health costs,” Levitt warns.
Prescriptions that used to cost no more than $30 - a basic copay - are now paid for at full price, which
can be hundreds of dollars.
Some medications, such as those 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 -- often aren't.
A pack of EpiPen brand epinephrine auto-injectors. Joe Raedle / Getty Images
Few prescription drugs or devices better symbolize just how out-of-control healthcare costs are than the EpiPen.
Between 2008 and 2016, the pharmaceutical company Mylan raised the price of its auto-injectors by more than 400%, sparking public outrage and congressional scrutiny.
Other epinephrine-dispensing products soon emerged, such as Adrenaclick and Auvi-Q, along with generics in hopes of offering prices more people could afford.
Up to a point, it worked.
This is not a decision.
None of this is a decision
Meghan Neri mother of two children with allergies
“The amount that patients with private insurance had to pay out-of-pocket decreased,” says Dr. Kao-Ping Chua, associate professor of pediatrics at the University of Michigan Medical School and Susan B. Meister Center for Evaluation. and Ann Arbor (Michigan) Children's Health Research.
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, is allergic to milk, and her son, Thomas, 12, is allergic to milk, peanuts and tree nuts.
They don't leave home without the devices tucked into a small fanny pack that they always carry with them, in case of exposure.
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“One hopes that medicines and energy are not wasted,” Neri acknowledges.
The injectors only last a year on average.
The Neri family must buy four packages each year for the two children, to have them at home and at school.
Shea and Thomas have each had to use emergency epinephrine injections.
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When the pharmacist told Neri the new price for the refills, she was devastated and did not pay the $2,400 that day.
“I was a little embarrassed to say, 'Right now I can't,'” he explains.
The goal of deductibles is to discourage health care misuse and prescription drug abuse, Levitt argues.
But epinephrine auto-injectors save lives.
"Nobody uses them inappropriately," he says.
High value vital medicines should not cost anything"
Dr.Kao-Ping Chua Professor of Pediatrics
In fact, Neri says that auto-injectors are necessary tools to protect her children.
“This is not a decision.
None of this is a decision, ”she assures.
Epinephrine is the first line of defense when a person has a severe 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.
“High-value, life-saving drugs shouldn't cost anything,” says Chua, of the University of Michigan.
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Chua has spent years studying how much families pay for emergency epinephrine.
He led a study published last July that found 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 in adults, but also because they need multiple auto-injectors to keep at home, at school and during after-school activities.
The majority of families paying more than $200 a year in Chua's study -- 62.5% -- were enrolled in high-deductible health plans.
“In my opinion, it is above all a problem of design of the insurance benefits”, emphasizes Chua.
"People don't expect to pay as much when they have health insurance because they assume the insurance will cover the medication."
Patients may question the high prices
“It's often up to insurers—and employers in the case of workplace health benefits—whether certain health services and medicines are exempt from the excess,” Levitt says.
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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 cost for epinephrine in some of its plans.
It's the only major insurer to cover epinephrine so far, but "we're increasingly seeing a trend for insurers to waive out-of-pocket costs for life-saving medications," Levitt says.
Chua stresses that 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.
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But AHIP (formerly known as America's Health Insurance Plans), a group that represents these companies, said the drugmakers are to blame.
“We encourage
Big Pharma
to end their price gouging tactics and drive down their out-of-control costs to patients,” the group said in a statement to NBC News.
"Patients need their life-saving drugs, so the 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 the patients.
“The most important thing they need to know is whether or not they have to pay a deductible for drugs before insurance will cover them,” Chua says.
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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 another brand of emergency epinephrine and are now paying $25 per bottle.
“We were going to spend whatever it took to keep them safe,” Neri says.
"But it's helpful to have enough information to make an educated decision and not feel like you're wasting money unnecessarily."
Levitt points out that patients should feel empowered to challenge high prices.
“It's a lot of work,” she says, 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' in health insurance,” he says.
"You can often win."