Editor's note: This file was originally published early August 2016 and has been updated with new information.
The increased cost of EpiPens has made headlines recently, but the expensive price tag on this life-saving device wasn't news to Danielle Sotirakos, a mother of three children including an 8-year-old daughter newly diagnosed with several nut allergies. After the diagnosis, Sotirakos went to purchase the EpiPen her daughter needs and was stunned when she heard the price. With her family's high-deductible health insurance plan, Sotirakos was on the hook for the entire cost: a whopping $655.
But a child or anyone else with severe allergies shouldn't have just one EpiPen, or even just one set of them. Ideally, they need one set in their bag, another with a parent or spouse, one at home, one in the car, one at school or work, etc. In fact, the pharmaceutical company that makes EpiPens says you should always have two for safety, because what if one doesn't fire, or what if one isn't enough?
"Eight packs of EpiPens to cover my loved ones at $700 for a pack of two, and remember the school has to have two, will cost me $5,600. That is truly insane," says Teresa Voght Lisek, who has two children and a husband with severe allergies. She points out that the cost is more than her mortgage each month.
Sotirakos visited her daughter's allergist a few weeks after the diagnosis and was fortunate to snag a free two-pack sample from the doctor. But she laments how scoring an EpiPen at a reasonable price is a matter of "getting lucky." And given that the devices expire after one year, the costs will keep coming.
Why is the price so high?
In 2008, one EpiPen cost about $100. But today, they can cost more than $600 each. (Photo: Greg Friese/flickr)
EpiPens weren't always so expensive. In 2008, the price was about $100, but since then it has increased more than 450 percent. EpiPen is made by the Mylan pharmaceutical company, which has a near-monopoly on the device since its competitor recalled its product last year.
In a statement to CBS News, Mylan said the cost "has changed over time to better reflect important product features and the value the product provides," and "we've made a significant investment to support the device over the past years." But according to Dr. Purvi Parikh, MD, an allergist in New York City and medical director for Allergy & Asthma Network, neither the medicine in the EpiPen nor the device itself has changed in recent years.
The reason patients are starting to pay attention to the price increase is because people's health insurance plans have changed, Parikh says. "In the last two to three years, people have much higher deductibles that they didn't have before, so the whole cost of the EpiPen is going on the patient, whereas before, the insurance would absorb most of the cost. Now we have these insurance plans where people have to pay $4,000 or even $10,000 out of pocket before their insurance even starts to kick in," she explains.
So how does the average patient afford the medicine they may one day need to save their life? “Mylan does have co-pay assistance. They have cards where they will pick up the cost of the copay so the patient can have up to six EpiPens for free through their ' My EpiPen Savings Cardy EpiPen Savings Card' program. It helps 80 percent of patients with commercial insurance," Parikh says. However, some of those coupons are for only $100 off and others depend on your eligibility.
The rising costs of EpiPens may draw comparisons to "Pharma Bro" Martin Shkreli's Turing Pharmaceuticals, which raised the price of a generic cancer and AIDS drug from $13.50 a pill to $750. Mylan chief executive Heather Bresch has come under fire for her $19 million salary, perks and lavish lifestyle, reports the Washington Post.
But Parikh says Mylan is not all bad. "In the last two years the company has put 650,000 EpiPens for free in schools nationwide for kids who haven’t yet been diagnosed." And according to Tonya Winders, president and CEO of the Allergy & Asthma Network and mom to a daughter with life-threatening food allergies, nearly 80 percent of families pay less than $100 for their prescription.
But there's hope on the horizon. Parikh says the Allergy & Asthma Network is working to get the EpiPen placed on a preventative medicine list so that health insurance companies will be forced to cover the price. Winders says that could happen within the coming months. And if you need assistance paying for your EpiPen prescription, Winders says to contact the network for help.
Following the recent uproar over the price increase, Mylan announced on Aug. 25 that it would provide a savings card worth $300 to consumers who have to pay full price for the drug. That equals about a 50 percent price cut for people without insurance or for those with high-deductible plans. Days later, the company announced it would introduce a generic version of the product, which will sell for half the list price of the brand-name EpiPen. Mylan says the generic product will be identical to the original, but it will have a wholesale price of $300 for a two-pack, compared with about $600 for the EpiPen. The generic medication should be available within several weeks.
Why EpiPens are so important
"Timing is everything in treating these allergic reactions. It could be life or death, so a patient not having an EpiPen available to them could have very serious consequences," Parikh says. (The video above shows how to use an EpiPen.) At least one or two deaths happen each day from life-threatening allergies in the U.S. that could have been prevented with an EpiPen, she says, and at least one in 13 children has some type of food allergy or venom allergy that requires an EpiPen prescription.
Take Caroline Stone, a mother of two whose son, Bradley, has several severe food allergies. "My son is anaphylactic to sesame and soy and allergic to peanuts, tree nuts, chickpeas, green peas and kiwi. Last year on two occasions an EpiPen was required to stop anaphylactic reactions," Stone says. Neither Benadryl nor albuterol worked, she recalls — only epinephrine did the trick. "Without it, his body systems could have shut down, and his life would have been in danger."
Now, Stone keeps six sets of them around for emergency use. "Unfortunately I know firsthand how critical they are to living with food allergies."