Epinephrine: A Necessity, Not a Choice

By Kristen Chandler

July 28, 2016. This date probably doesn’t hold much significance for most people. In fact, for most people this was probably just a regular day. It started off as a regular day for my family as well, but by the end of the day it had become a date I will never forget.

My son was diagnosed with severe food allergies in 2007 and given a prescription for EpiPen the next year when his allergist discovered that, despite our avoidance, his allergies seemed to be getting worse, and it did not look like he would grow out of them like many children do.

Kristen's son needed EpiPen

July 28th of this year was the first time, after carrying EpiPens for around eight years, that I ever had to use one of them on my son.He is severely allergic to milk, eggs and beef. I had made a batch of brownies for him using one of our favorite mixes made by Enjoy Life. I’d also made a separate batch of brownies that were unsafe for him. I always make sure when we have safe and unsafe food, especially similar items, that they are not in similar containers and are kept in different areas of the kitchen. This time, my son ate first and asked later, although at ten years old he knows to ask if he can have something if he is unsure. He came into my room panicking because “they tasted funny.” When I realized what he had done, I gave him Benadryl right away. However, his face began swelling and he started to gag, saying he couldn’t swallow. It was at that point that I administered epinephrine via his EpiPen and took him to the emergency room. Thankfully, he didn’t need a second dose. They monitored him, and we came home. But had I not had his EpiPen that day, it is likely that the outcome could have been very different.

EpiPens, Mylan and Money: A Brief History

Epinephrine has been used for years in emergency situations for allergic reactions. The EpiPen is the most commonly prescribed form of epinephrine injector.  Most everyone, whether they have life-threatening allergies or not, has probably heard of the EpiPen—especially recently, thanks to the commotion that Mylan CEO Heather Bresch has caused.

In 2007, Mylan acquired the EpiPen from Merck. At the time, the EpiPen was bringing in around $200 million in revenue, and the cost of an EpiPen was about $57 per pen. Now, however, the retail price of a two-pack of EpiPen is approximately $600. (This is Mylan’s list price; it may cost more depending on which pharmacy you use and where you live.) As reported by Truven Health Analytics, this is a 548 percent price increase since Mylan took over.

EpiPens used to be available for purchase EpiPenindividually, but now they are only sold in sets of two. However, most pharmacists and doctors advise you should have two on hand, because one pen may malfunction, and because a second dose may be needed before you get to the emergency room. The shelf life of an EpiPen is approximately a year and two months, meaning it needs to be replaced annually. Children who attend school need to have a set at their school as well as a set for home use. That means, for parents of ONE allergic child, at least two sets of two Epipens need to be purchased yearly. And that is in the event that no reaction occurs. If you use one or both pens, you’ll need to replace that set.

The cost not only affects consumers, but insurers and taxpayers as well. The price of a two-pack ranges from $600-$700 with no insurance coverage. At this time, Medicaid pays full cost. With other insurance plans, some people are still paying $300-$400 out of pocket.

Why the price hike?

Of course people are blaming the government, but in the United States, drug manufacturers actually control the prices and they charge whatever they think the market can handle. Mylan claims the reason for the price hike is that more people are enrolling in high-deductible health plans and consumers are having to pay more out of pocket for medications.

In a Washington Times article, Josh Earnest, who is the White House press secretary, debunks the theory that the government is behind the price raise and blames it on greedy pharmaceutical companies. This theory actually makes the most sense, considering that in 2015, the profit Mylan pulled in from EpiPens alone was $1.2 billion, accounting for 40 percent of their total profits. Furthermore, while the price of EpiPens has been on the rise, so has the salary of Mylan employees. Bresch’s salary and bonus have risen more than 600 percent since 2007. Other top executives at Mylan also received pay increases in the double digits last year.

Bresch quickly jumped to the defense of Mylan, claiming that the company only makes a little over $100 off the $600 EpiPen price tag. The remainder, she says, covers product manufacturing, distribution, enhancement and investment.

Feedback on the Price Hike

Last week, Mylan stocks plummeted 6.2 percent just minutes after Hilary Clinton publicly blasted the company for the price increase. Members on both sides of Congress expressed concern and dismay, and many senators and representatives released personal statements or wrote letters to Mylan. Some of them include: Senator Mark R. Warner from Virginia who has a child with severe allergies, Senator Mark Kirk from Illinois, and Senator Amy Klobuchar from Minnesota, who also has a child with severe allergies. Senate Judiciary Chairman Chuck Grassley from Iowa wrote to Mylan and pointed out that EpiPen two-packs sell for less than $100 in France and little over $100 in Britain.

But how does this price hike affect the rest of us— the middle and lower class? The under- and uninsured? Many parents took to social media to complain. Mellini Kantayya, whose husband has severe allergies, stated that while her insurance paid for most of the cost of his EpiPens, they still paid for it in social cost. She wanted to do something, so she started a petition. When signing the petition, you have the option to send a letter via email to your state representatives. To date, over 140,000 letters have been sent to Congress.

Below are some examples of how others have been affected and how they have responded:

  • Jennifer Vallez of Connecticut has a nine-year-old daughter who is allergic to peanuts and tree nuts and relies on EpiPens. Her insurance has a $2,000 deductible, which she had not yet met, so she had to pay the full cost of the EpiPens. She called the situation “morally wrong.”
  • One parent posted a receipt online from the purchase of three boxes of EpiPens, a total of six EpiPens. The total price was $1,698.28
  • Another parent, a single mom, posted a receipt for $925. She only purchased one box of EpiPens.
  • Another parent said that, while her insurance covered the cost, some of her friends weren’t so fortunate and many times had to make the decision between paying rent and buying EpiPens for their children.
  • Jennifer DiMercurio’s husband and son all rely on EpiPen. At one point, her husband had a job that didn’t include insurance, so after using their EpiPens, they had to borrow from family to replace them. He has since found a job with health insurance, but they had to wait on the insurance to kick in to buy new EpiPens. In the meantime, they avoided allergens and were going to resort to using expired ones if necessary.
  • Aleasa Word, a single, working mom, started saving a year ago to purchase the four packs she knew she would need for her two children this school year, one set per child for home and another for school for each. Even with her insurance she still ends up paying around $600 per box, and with four boxes that puts her total out-of-pocket cost at $2,400. Word is also the founder of Love Remembers Day, a day that remembers and celebrates the lives of people lost to food-induced anaphylaxis.
  • Colleen Kinney of Iowa sent a care package to Bresch. The package included peanut butter cookies, which are dangerous for her son who is severely allergic to peanuts and tree nuts. She included the following note:

Heather Bresch-

Please provide explanation for EpiPen price hike. Enjoy these treats. If my son ate these, he would die without Mylan’s EpiPen.

Sincerely, Colleen Kinney

  • Some parents have even resorted to splitting the two-packs, having one for school and one to carry, which is dangerous considering the first dose may not be enough, or the pen could be defective.

 

I spoke with some friends of mine who I knew had severe allergies or children with severe allergies. One friend, who is severely allergic to ants, remarked that he had an EpiPen a few years ago but didn’t use it, so he opted not to refill his prescription because of the cost. He now does his best to avoid exposure to ants. He also noted that were it his wife or children who needed the EpiPens, it would be a different story.

The other friend has a daughter with severe allergies. She decided not to get the EpiPen because of its price. Even with her husband’s military insurance, she said they were still incredibly expensive. They sought out cheaper options and went with the Auvi-Q for school and a generic epinephrine injector for home. They like the Auvi-Q because it talks, and their copay is around $10 for the generic. (Auvi-Q has recalled their injectors for device and dosage malfunctions, but she said they replaced hers during the recall.)

My children’s health insurance covers my son’s EpiPens, but there have been instances when I’ve gone to get a prescription refilled and found out that our insurance no longer covers it, or only pays partial, so I end up having to pay out of pocket for something I haven’t paid for in years. This year alone, I have had to get three boxes of EpiPens—one because they had expired, a new box for a new school year, and then I had to use one from the first box on the incident in July, so I had to replace that box. I could have made do with just the one we had left, but I firmly believe in having a backup on hand. The retail cost at the pharmacy we use is approximately $700. So that is $2,100 in EpiPens that I’ve purchased in the past seven months. If our insurance didn’t cover them, or if at some point they stop paying full cost, I would be like Aleasa Word and start saving a year in advance to purchase the next year’s EpiPens, or search for cheaper options because they have already saved his life once and there is no way we are going to go without them.

Alternatives

Two companies, Auvi-Q and TwinJect, have recalled their injectors, which has boosted EpiPen sales even more. Adrenaclick is an alternative and sells for less than $150 with a coupon at Sam’s Club and Walmart. However, unless your prescription is specifically for Adrenaclick, it can’t be substituted for EpiPen. Adrenaclick also offers a generic version, however their company is not able to manufacture the drug in large quantities at this time. (Some health insurance companies partially cover Adrenaclick, but it is unknown if the generic version is covered by Medicaid.)

Another downfall of generic drugs is that while the EpiPen is a drug, it is also a medical device. Because of that, more than half of pharmacists in the United States can’t switch to a generic injector without specific instructions from a physician (meaning they can’t substitute a generic option for the EpiPen). One pediatrician suggests that switching to a generic brand could be burdensome and even dangerous because the patient and family members would have to re-learn how to safely use the new device and it could cause confusion in an emergency situation.

Mylan has come up with a savings card that is worth up to $300 to help offset out-of-pocket costs. However, if a patient’s deductible has not yet been met, they still may have to pay around $300 with the savings card. And the savings card doesn’t apply to uninsured consumers—which is unfortunate, because uninsured people are often the ones who need the most help buying them.

Grassley said in an interview last week that, although Mylan is offering a discount, the retail price remained the same and some insurance companies, mainly Medicare and Medicaid, were still paying out high amounts.

Parents shouldn’t have to choose between paying a bill and buying life-saving medication for their children. They shouldn’t have to worry that they’re not going to have enough money to replace their children’s EpiPens when they’re about to expire. EpiPens are something that people with life-threatening allergies rely on; they shouldn’t be an extra burden or a choice.

I believe the situation is best summed up by these words from Chirlane McCray. She is the First Lady of New York, who also suffers from a severe allergy to nuts. She said “I understand that Mylan is a business, and businesses need to turn a profit. But what is the justification for price-gouging on life-saving medication? The answer is simple: There is none.”


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