The 41-year-old New Yorker exited a subway train, walked up a flight of concrete stairs to the bustling city street, and suddenly felt her tongue and throat swell. She started to sweat. She felt nauseous, short of breath and couldn’t swallow.
If Levin let any more time pass, she knew she wouldn’t be able to breathe.
She frantically opened her purse, wrapped her fingers around an EpiPen, and jammed it into her thigh beneath her workout pants. Immediately, she felt her throat open. She took in a deep breath of air — a sigh of relief.
“That was really scary, because usually I can do it at home or something and this time I didn’t know what hit me. I just pulled it out and had to do it right in the subway,” said Levin, who has a combination of environmental, food and medication allergies, often leading to cross-reactivity.
“That’s why I need EpiPens, because I don’t know what to avoid,” Levin said, referring to the portable auto-injector devices used to treat allergic reactions.
“Because of my history, I’m really supposed to have four with me at all times, and when I travel, I’m supposed to have like six or eight,” she said. “Usually, one is not enough because the reaction is immediately severe, so there are times where I have to use up to three until I can get help.
And what does that life-saving medication cost her?
“Right now, it’s $200 each or even $300.” For some, it costs even more.
EpiPen price hike hits hard at school
Many adults and families of children with severe allergies are facing sticker shock when they pay for their EpiPens, especially amid back-to-school season.
Theresa Ray, a 30-year-old mother in Cincinnati, was surprised to find that purchasing two EpiPen two-packs for her 6-year-old son would have cost her family about $1,300, she said. Her son was diagnosed with food allergies five years ago.
“When we first bought them (about five years ago), it was around $100 or $150 for a twinpack, and at that time I remember thinking, ‘Wow, that’s kind of expensive.’ Then, the next year, I found out they expired and we have to get them every year. They were more expensive, but by that time, only a couple hundred dollars,” Ray said.
“Last year, we spent around $650 for a twinpack and this year, same thing,” she said. “It was funny, I told my husband, ‘I wonder why no one’s talking about this. It’s really weird no one’s talking about EpiPens.’ … And then, I saw a news article on Facebook about it.”
The soaring cost of prescription drugs explained
Now, the new study suggests that a combination of market exclusivity provisions granted to drug manufacturers, and coverage requirements imposed on government-funded drug benefits, are both driving the high costs of prescription drugs nationwide.
“I continue to be impressed by the complexity of the issue. It is not as easy as saying, ‘Let’s let Medicare negotiate for Part D drugs,’ or any simple fix,” said Dr. Aaron Kesselheim, an associate professor at Harvard Medical School and associate physician at Brigham and Women’s Hospital, who was lead author of the paper.
“There are problems at every level — including inefficient government policies, Food and Drug Administration regulatory rules, physician prescribing practices — that contribute to manufacturers’ abilities to charge high prices, leading to high drug spending, and unfortunately suboptimal public health outcomes,” he said. “It is going to be very important to consider the impact of any proposed changes on the many different contributors to the issue.”
Kesselheim and his colleagues reviewed and analyzed previous papers published in medical and health policy journals from January 2005 to July 2016, taking a close look at how each explained the cause of rising drug prices and how to possibly reduce costs.
Based on their analysis, the researchers found that the primary reason for increasing drug spending is the high price of branded products.
While only about 10% of all prescription drugs in the country are brand-name drugs, such as the EpiPen, they account for a whopping 72% of drugs being sold, the researchers discovered.
‘There’s no other option’
Are there any other options? “The ER,” Levin said. “You know, if you can call an ambulance. But when my airways are blocked, I can’t talk. So, there’s no other option.”
The AAAAI has expressed concern about the rising cost of epinephrine auto-injectors and advocates for more affordable medications for all diseases.
“Unfortunately, the shelf life of epinephrine is not very long and the need to refill prescriptions on an annual basis can result in a financial burden for patients,” Casale said.
“As a result, some patients are carrying epinephrine auto injectors that are expired because they cannot afford to refill a prescription,” he added. “Others, when they find out the price of an epinephrine auto injector, failed to fill their prescription.”
Policymakers weigh in
“Patients all over the United States rely on these products, including my own daughter. Not only should the Judiciary Committee hold a hearing, the Federal Trade Commission should investigate these price increases immediately,” Klobuchar, a Democrat, said in a written statement that was released on Saturday. “The Commission should also report to Congress on why these outrageous price increases have become common, and propose solutions that will better protect consumers within 90 days.”
“While the price is increasing, the other issue now is that the health insurance plans have now put more and more responsibility on the patient,” said Parikh, who also serves as Levin’s doctor.
“It’s definitely unfortunate because it’s a necessary lifesaving medication. It’s not really a luxury,” Parikh said. “It’s a single-use medication and you need it available everywhere you go, so often our patients will have multiple sets of EpiPens at home, school, work. So it’s a huge cost on the patient.
“Not only have I seen it save lives, but I’ve seen the opposite happen, of when an EpiPen wasn’t available and both children and adults passed away.”
EpiPen maker opens up
A spokeswoman for Mylan emailed a written statement from the company to CNN. In the statement, company officials indicated that they know more is needed to help patients with high-deductible insurance plans.
Levin, the patient in New York, said that her EpiPen costs are partly covered by insurance, but she has to first pay a separate deductible under the category of injectables before she can purchase her EpiPens at the discounted insurance price.
“Five years ago, the deductible was only $100, but as the price increased, so did the deductible. So every new year, I always have to anticipate and pay the dreaded cost,” she said.
Additionally, “there are some coupons available, which help lower the cost to patients, but there still is a considerable copay for most patients,” said Casale, the AAAAI executive vice president. “Although the cost of epinephrine auto injectors has risen considerably, they are lifesaving and patients should do whatever they can to secure them.”
Meanwhile, Kesselheim and his colleagues suggested short-term strategies to reducing high drug prices in their paper.
“We need to re-examine the market exclusivities provided by the government to manufacturers to ensure that they adequately protect innovative products without similarly applying to less innovative treatments that add cost without adding value,” Kesselheim said. “More patients and physicians need to talk about the costs of medications with each other — and express concern to their legislators — so that evidence-based lower-cost alternatives can be found, if possible.”