Illustration by Jim Cooke

By now you probably know the story of the life-saving EpiPen and the company that took it from a product that generated a measly $200 million in 2007 and turned it into a $1 billion-a-year cash-printing machine. That company, Mylan, used a neat little trick: It simply raised the price. And it may have taken Congress and the media awhile to catch on, but consumers definitely knew. In fact, allergy sufferers were filing complaints with the FTC about Mylan’s price gouging as early as 2012.

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Gizmodo has obtained official consumer complaints about EpiPen pricing, all filed with the Federal Trade Commission (FTC), through a Freedom of Information Act request. And while they’re not altogether surprising, they give us a sense of how much frustration the EpiPen pricing put Americans through. Given our fragmented and fundamentally broken health care system, each EpiPen story is different.

“A few years ago my co-pay was $45,” one person from Vermont wrote to the FTC in November of 2015 about their EpiPen prescription. “The last one I bought which has long expired cost $80. I got a prescription from my doctor and just could not believe the pen with no insurance is now $500 and my co-pay $200, which I simply cannot afford yearly. I am on disability with a very limited income. I just want to cry!”

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The complaints start as a trickle in 2012, with some people noting that they’re suddenly forced to buy two EpiPens at a time when they only need one. The price, of course, became higher for two. And as Gizmodo reported last month, the FDA’s change to dosing recommendations around 2010 is why they’re sold exclusively in two-packs now. By 2014 the complaints start to really pick up with direct cries for Mylan to be regulated.

Some of the complaints, as I mention, point to flaws more broadly in our health care system. Like one consumer who has to fight with their insurance company over covering expensive, life-saving EpiPens for their son. Another person had automatic billing and delivery set up with their pharmacy and learned that they owed over $800 because their doctor had prescribed three packs of EpiPen, which apparently weren’t going to be covered by insurance.

But it’s clear that Mylan shoulders the majority of the blame in the complaints below. Not that there was any doubt, but you can see the price in the complaints steadily rise as the years go by.

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Below are a sampling of complaints filed with the FTC over the past few years about nightmares with the EpiPen. Some spelling errors have been corrected to make the complaints a bit more readable. Redactions were made by the FTC to protect the privacy of consumers making the complaints.

July 2012, Idaho:

Dey LP is the only distributer of the EpiPen auto injector, a division of Mylan Inc. The FDA has stated the issue is a FTC issue. They used to sell a single EpiPen that is what doctors usually prescribed. As of 2012 they are only selling 2 EpiPens together as a bundle, which also doubled the price. They are claiming you can keep one at work now, or have a backup in case one fails. The FDA regulates faulty drugs and these EpiPens have been around for years and are trouble free. These EpiPens only have a shelf life of 1 year, and then you buy a replacement. If you get 2 EpiPens, they will expire at the same time, there is no benefit of having to buy 2 at a time. Dey in doing this has doubled its revenue by this scheme and these auto injectors are not cheap. I have found other people upset by this also and they have started a web site. Dey has no real documentation to support there stance that you cannot buy a single EpiPens like you could until 2012. People without health insurance like myself are hit the hardest also, you have to choose, EpiPens and maybe no bee stings, or not to buy the EpiPens and take a huge chance of no bee stings. What Dey is doing is wrong, they have the exclusive market on this medicine, and are dictating how you buy there product, there is no choice anymore.Thank You for looking into this matter.

October 2012, Tennessee:

My son [redacted] had 2 multiple RX’s -1 for a 2 pack asthma inhaler, 1 for 3 Twin Packs of Epipen as needed for his severe food allergies at school. The inhalers (2 boxes)were filled as written and charged under 1 copy. The EpiPens were filled and charged as 3 copays (120.00). Had I not had so many conflicting issues trying to have the EpiPens filled as written, I would not have questioned this. The Dr’s office, pharmacy and myself were told it would be covered under one copay, then it was 2 copays but one would be free, then it was back to all three under one copay and the day it was to be filled, it was charged at 3 copays again. During the time, the Doctors office was told that Cigna did not want to pay almost $500 for this prescription. I then received a letter in the mail after filling it at $120 stating the prescription would be covered as requested by my Doctor. I then called to question this again since the inhalers (2) were filled at one copay but not the multiple EpiPens. Customer Service told me that was the price for 2 inhalers (1 copay). I feel Cigna should honor their original statement and reimburse me $80.00 for the 2 additional copays that were supposed to be covered under one copay. These EpiPens are absolutely necessary in case my son has an allergic reaction at school (1-self carry, 1 homeroom and 1 nurse). I also feel that it is unprofessional for an insurance company to not fill a prescription due to what it would be costing THEM as a company- do I really need to compare what my family pays Cigna for their coverage as opposed to the money they are claiming they don’t want to pay for a prescription?

July 2013, New Hampshire:

I purchased an EpiPen which is used to protect me if I get a bee sting. The company now FORCES consumers to buy 2 which is an unfair trade practice. Each one costs over $100! We should have to option to buy one at a time. They only last one year and I have never used one, now I will waste twice. As they are a virtual MONOPOLY this should not be allowed.

August 2013, California:

Mylan Specialty manufactures and sells the EpiPen, an auto-injector device containing epinephrine, for those who may get anaphylactic shock from strong allergic reactions, such as foods or insect stings. I suffer from a bee-sting allergy, and have been carrying epinephrine injection devices for 30 years. I have a relatively mild allergy, but I carry an EpiPen just in case. For my allergy I have always required only one dose. Also, the medication is good for only about 1 year, and I have typically been stung about once every 5 years, so if I were to keep up to date with the EpiPen I carry, I would buy 5 before using 1. This injectors cost about $100, which I consider a high cost. My original prescription, for an “Anakit” in 1984 only cost about $20. Starting in 2011 Dey Pharma, the subsidiary of Mylan which sells the EpiPen announced that they would stop selling individual EpiPen, and only sell a 2-pack, plus an “practice” auto-injector, for a list price of about $240. For someone like me, who never needs more than one EpiPen, and uses it one every 5 years, the cost of keeping an up to date Epipen rose from $100 year to $240 year, and of the 5 year cost of $1200, I’m only actually using about $100 worth of Epipen (and probably $5 of epinephrine!) I think this is price gouging, enabled by Mylan’s position as the sole provider of this in the US market in 2011. In 2013 a competitor company is supplying epinephrine auto-injectors, but using the same packaging rules, only selling a 2-pack, and actually at a higher price than the EpiPen. (They offered a $100 off coupon, which Mylan has matched.) My conclusion is that there has been lack of competition in this market, which Mylan has exploited by forcing consumers to overspend on EpiPens by a factor of 2.5. If I travel outside the USA, I can still buy single EpiPens, for about $100, which is a more reasonable option for many emergency epinephrine users like me. I hope the FTC can stop Mylan’s abusive practices.

November 2013, New York:

Due to a potentially lethal allergy to bee stings, I am compelled to carry epinephrine with me at all times. In order to safeguard my health, my doctor has been writing me prescriptions for Mylan’s EpiPen for many years. Mylan is the exclusive manufacturer of the EpiPen. I write to you because of a recent incident wherein my physician called in a prescription to our local drug store and when I went to pick up my prescription I was given the “2-Pak” at a cost of $278. When I inquired, my pharmacist told me that the EpiPen is now only sold in “2-Pak” form and that I can no longer purchase just one at a time. Because there is no “generic” EpiPen my insurer will not pay for the prescription. In the past, I have paid approximately $100.00 for one EpiPen. Now, because of the two EpiPen packaging, I am forced to purchase two EpiPens at a cost to me of nearly $300.00. An EpiPen is only good for one year. Due to Mylan’s decision to only furnish the public “2-Pak” EpiPens, I will now have to spend nearly $300.00 annually to replace my one EpiPen simply because I can no longer purchase just one.

January 2014, New Jersey:

On November 29, 2013 at 9AM, I received a call from Express Script asking how I wanted to pay for the balance I have in my account. I called back Express Script to clarify the call because I am not aware of any existing balance I have since most of my medications are 100% covered by my insurance or if I have a copay, the balance would be automatically deducted from my HSA ( Health Savings Account ). The first representative I spoke to cannot give me the answer as to why I have a balance of $817.82. To find the answer, I logged on to my Express Scripts account online and then I found out that it was for the EpiPen that my doctor prescribed for me. I called Express Scripts right away and told the representative that if the $817.82 balance is for the EpiPen, to please not fill up the prescription because I cannot afford to pay for it and that I will not be needing 3 packs of EpiPen in one time since it only indicated for emergency use. She said that she can put a ‘Stop’ on the prescription. I clearly reiterated to her not to fill up the prescription. On December 4, 2013, I saw a package outside my doorstep and it contains the meds that I told them to cancel. I called Express Scripts right away and the representative told me that they will send me the return label within 2 days. Two days have passed and I did not receive any call or email from them regarding the return. On Dec. 13, 2013, I contacted them once again and the rep that I spoke to said that they decided that they cannot take the meds back. I spoke to a supervisor and told her that I called Express Scripts in a timely manner and clearly told the rep that I spoke to not to fill up the prescription because $800+ is too much for me too pay for the EpiPen when on my past insurance coverage I only paid a maximum of $30 for the same medication. I was told that they will call me back within 5 days after they reviewed the phone conversation I had with the rep who was supposed to put a stop on the prescription. Five days have past and I have not heard from them. I tried calling them again on Dec. 20, 2013 and they said that they are still in the process of reviewing the phone call. Another week have past and I got the same answer. I got a bill from them on Dec. 31, 2013 and it states there that they may not process any additional orders I might have until the balance has been paid. On Jan. 10, 2014, they are supposed to mail me my blood pressure medication which is on auto-refill. I cannot stop taking these meds and wait until they finish the investigation which nobody knows when. I don’t think that they should be penalizing me for the mistake they made.

November 2015, Vermont:

Currently, there is no generic EpiPen available due to the manufacturer’s patent. Because of this, Mylan, the maker of the device, is allowed to charge what it wants without direct competition. And what it charges is alarmingly high. Mylan currently offers a $0 copay card that allows patients with insurance to reduce their copay on a two-pack of EpiPen injectors to $0, up to a maximum benefit of $100 per pack. This offer is good for up to three packages. However, there are many stipulations to receive one, like having Medicare. My RX insurance is Humana RX and Medicare affiliated. Their page tells me this disqualifies me from the coupon. A few years ago my co-pay was $45. The last one I bought which has long expired cost $80. I got a prescription from my doctor and just could not believe the pen with no insurance is now $500 and my co-pay $200 which I simply cannot afford yearly. I am on disability with a very limited income. I just want to cry! Mylan and others simply MUST be price regulated. I can’t find any other assistance program for this. I have written to Mylan about this, in this month of Nov., but there has been no response.

July 2016, Washington:

When refilling my annual prescription for an EpiPen needed because of my allergy to bees, I learned I would have to pay $610+ out of pocket. I have health insurance with a high deductible and this cost seems out of control. Even the generic alternative at Costco is priced at $500+. This feels like price gouging/fixing as most people won’t be able to forgo filling this prescription. Compounding the problem is that the medication is only available in a 2-pack. I chose not to refill mine at that cost.

July 2016, New Jersey:

My son has required an EpiPen since he was born. Over the past 21 years the cost has skyrocketed and I can no longer afford it. My insurance company informs me that our out of pocket cost this year is $622.23. Mylan offers a discount card of $100, so I am still going to be responsible for $522.23. These pens expire every year and you typically need more than 2 pens (2 for school and 2 for home/carry on your person). These pens have not changed in the 21 years we have purchased them, I don’t understand why the company can charge these exuberant prices, especially when there are no alternatives. I feel that the government should investigate if they are price-gouging. Aren’t there rules about how much you can change people for items and services during disasters? Why doesn’t something like that apply to life threatening allergies.

As you can imagine, complaints to the FTC spiked in late August of 2016, as the news of EpiPen price gouging went mainstream. As just one example...

August 2016, Indiana:

DO YOUR DAMN JOBS! You sit on your duffs while healthcare & drug prices are spiraling out of control with consumers continuing to feeding corporate profits while they have to choose dying rather than go bankrupt! Announcements today of Epipen & diabetic blood sugar strips making huge jumps just “because they can”. You people seem to only have interest in protecting corporate interests rather than consumer interests. Your department, the SEC & any other consumer protection bureaus need to do the jobs we hired you to do! I implore you to take an interest in these unwarranted huge price spikes.