In law, the term “contract of adhesion” refers to a deal between parties that are so disparate in their bargaining power as to leave one of them with all the say-so and the other with no other option but to go along with the terms. Contracts need not be written, a contract is an enforceable promise. So while some specific laws may require something to be in writing (say, an agreement regarding selling or buying a house), other contracts can exist just from the moment promises are exchanged (like one person promising to do work and the other person promising to pay when the work is performed).
In its own way, purchasing an item at the store is a contract. You are paying some agreed upon amount and in exchange you receive rights to that item. Sometimes the rights are broad, such as if you buy a tomato you can eat it right away, cook it, give it away, or forget about it on your counter. Other rights are limited, such as if you pay for prescription medication, you have the right to use it as directed for the named person.
These types of agreements exist and are often enforceable because there are situations where the bargaining power is unfairly held and there’s nothing one can do about it. Contracts of adhesion are on my mind as I contemplate rising costs for epinephrine here in the US and a dearth of choices in response. In other words, I am wrestling with news that Auvi-Qs in the United States have gone up in price.
Increasing Costs (Approx. $200 Increase!)
I read every comment that comes through on the blog and so appreciate the updates I get from readers about food allergy issues. One hot topic in this space centers around epinephrine auto-injectors. A while back I was upset to find that I could not buy an injector for my daughter that did not expire too soon. I have to pay cash prices for medication under our insurance so all the coupons and promotions out there would not defray the costs we faced. Some families have multiple sets of auto-injectors, we have one set and my daughter also has self-carried (when away from me) since age 4.
At any rate, here’s the detailed comment that came through from a reader named Kelly:
I’m coming into this thread of comments almost a year late, but I wanted to share how helpful Sanofi was regarding the short expiration dates on Auvi-Q. I purchased a 2-pack of Auvi-Q in August 2014 with a March 2015 expiration date. The retail cost at that time was $396 at RiteAid. I purchased another 2-pack in September 2014 with an expiration date of May 2015. Same price…$396 at CVS. I contacted Sanofi by telephone and told them I was disappointed that the expiration date was so soon, and they connected me to someone who asked a few questions, then gave me an email address and instructions to send a picture of the Auvi-Qs with the expiration date and the pharmacy receipt and that they would send me a coupon for $400 per pair to be used between January 2015 and June 2015. Within two weeks I received two $400 coupons toward my next couple of Auvi-Q prescriptions. Just last week I used the first coupon, assuming at $396 the new set would be at no cost to me. I was shocked to learn that the retail price of a set of Auvi-Qs was now $569.99! [Sanofi] covered $400, my insurance covered $120, and my co-pay was $50. I’m not sure if there’s a “game” with the cost of prescription meds when a coupon is being used, but I was quite surprised at the increase in price in only six months. But then again, epinephrine is priceless when it comes to anaphylaxis…
It was Kelly’s last line that got me thinking – how even after appreciating the process for the $400 voucher, and detailing the price increase as observed, there’s acceptance of the cost, whatever it may be, for epinephrine.
Epinephrine is priceless. We can agree on that point for certain. You can’t put a price on a life, etc. etc. but going back to the idea of disparate bargaining power, therein lies the imbalance. Taking it a step further, and to an issue that troubles me, there are those that are prescribed epinephrine and never fill the prescription. (Source) The 2013 Medscape article “Anaphylaxis Death Rate Down, but Epinephrine Use Poor” looks at some statistics out of Canada:
“Of the 80 deaths recorded in Ontario, Canada from 1986 to 2011, only a quarter involved the administration of epinephrine prior to cardiac arrest, including that by emergency medical personnel, Ya Sophia Xu, MD, from McMaster University in Hamilton, Ontario, reported […]
Of the 80 people who died, 47 had a known or suspected allergy to the fatal allergen, but only 18 had been prescribed an epinephrine autoinjector and only 9 had their autoinjector at the time of the reaction.
Additionally, at least 8 of these people received epinephrine that was either expired or administered incorrectly.“
I’d take it an anecdotally based step further and add that there are also those that hesitate to use the injectors they have when every minute is crucial and even those that split up injector two packs to avoid the cost of purchasing a second set. (See my prior post: When a School Tries to Split Up Epinephrine Auto Injectors). There are also those that just don’t make the initial purchase at all.
Education regarding recognition of anaphylaxis and use of epinephrine is very important. Even so, I’ve even had allergists remark that people hesitate to use epinephrine because they don’t want the ER bill that may follow hospitalization secondary to use of the injector. This of course would be a fallacy where the use of the injector is associated with the hospitalization rather than the allergic emergency, but I know there’s a tendency to convince ourselves a reaction isn’t really happening because we just don’t want to be in that situation.
Dollars and Sense
Operating from the starting point that we should absolutely have and use epinephrine auto-injectors as prescribed and as indicated by circumstances, practice with them, and refill prescriptions when they expire – do we have any voice when it comes to the out of pocket costs imposed by a food allergy diagnosis?
An article from August 2014 delved a little deeper into the money issue and found that the price actually went from $35.59 for an EpiPen in 1986 to $333.00 in 2014. I paid, with a $100 copay assistance card, $233.86 for the Auvi-Q (with a deficient expiration date), last year. In the article, “Anaphylactic Sticker Shock” by Terry J. Allen, the focus is on the cost of the EpiPen in the United States versus Canada:
[…] I thought of the nice Canadian pharmacist’s sadness at my having to fork out $94—until I told him how much more EpiPens cost only 10 miles south. “But why?” he asked. Good question, monsieur.
Ms. Allen’s article references a 2012 New York Times article entitled “Tiny Lifesaver for a Growing Worry“. I went looking and found that the article appeared in the business section of the NYT. In the piece, Heather Bresch, Mylan’s Chief Executive, refers to just 7 percent of those who need it carry a prescription. That was a statistic referenced just 3 years ago and seen as not only a market opportunity for Mylan, but for competitors.
(In the interest of disclosure, as I’ve mentioned elsewhere, I did go in April 2014 to Mylan HQ on their dime for a gathering of food allergy advocates. I found the experience informative. Mylan and Sanofi were both sponsors of the Food Allergy Bloggers Conference here in Las Vegas in 2013 and 2014 before I stepped down from involvement.)
As a consumer I read the market opportunity as one for competition that would benefit consumers but what if everyone is competing for that 7% (or what have you) of users instead of expanding into untapped groups? I hesitated to post any of this as Nevada’s legislature is working on expanding stock epinephrine (a measure I wholeheartedly support). I also, much like the debate I referenced in a recent post, didn’t want to be perceived as harming entities that do take supportive actions of the food allergic community. Then I thought to myself that the barriers to access presented by expense are a strong reason to continue to support stock epinephrine even though the push for these measures comes from dollars in the coffers of companies paid hundreds of dollars for their devices.
Mulling it Over
As usual, I don’t have a conclusion that satisfies me here. I turn to research and try to make sense of my own feelings at the same time. Am I re-directing anger at my powerlessness every time my 6 year old utters, “Mama, I feel left out” at what should be innocuous childhood interactions? Am I veering into politics on the subject of business and whether a free market can exist where the big is favored over the small?
I worry that my agitation over the expense of food allergies, whether it is for special food or life saving medication, means I am not grateful that the special food exists or that there are companies willing to provide easy to use auto-injectors and pour staggering amounts of money into marketing them, even assisting with legislative efforts to support stock epinephrine. I worry that I’m putting a price on my daughter’s life. Should I gladly pay whatever is necessary for a six to twelve month safety measure?
I have justified paying an already higher cost for the Auvi-Q in the past because I genuinely like it. My daughter likes it. I’ve met representatives from both Sanofi US (Auvi) and Mylan (Epi) and they’re just hardworking people like anyone else. On an individual level, I’m not saying there’s a lack of care. But I’m also a businessperson, and a glass half empty sort at that. A narrative is a story but it is also a sales pitch. If companies are happy to extol the success stories of lives saved by injectable epinephrine, where are the initiatives for access beyond stock epinephrine legislation for limited spaces? There’s a disconnect as well between the physicians who prescribe medication and the delivery of the medication to the patient. I always tell physicians what the tests or medications they specify end up costing and they show surprise. But those doctor’s visits carry a cost in and of themselves, after all, so the joke’s on me.
There’s always the default answers one could turn to, like saying this is the state of medicine in the United States or it is just business. I think at the end of the day I’m allowed to be frustrated, I’m allowed to vent, and then trot down to the local pharmacy and pay up like everyone else. I just wish if I’m going to over-pay for a product I knew an actual injector was being put in the hands of someone that couldn’t afford it by virtue of my willingness and ability to pay that increasing price. (Note: Selena Bluntzer at Amazing and Atopic does detail patient assistance programs that may assist some families in affording Auvi-Qs as well as information about generic epinephrine options that are worthwhile reads.)
The way I feel right now, I want to walk away from our Auvi-Q and go to the most cost-effective option, but the rub is that I have a 6-year-old that doesn’t see her medication as some liquid in a tube or credit card shaped case, she sees a lifeline. Given that my hope is that each year’s supply passes unused into our medicine cabinet stash of expired auto-injectors, the Auvi or Epi is not so much about the epinephrine inside but instead the symbol of being prepared for what may happen in the wide world. Even I can feel the difference in the weight of my purse with or without her injectors, and know she’s somewhere else by the absence of it. I was explaining what “ATM” meant to my daughter on Saturday and how the “auto” prefix also appears in words like “autobiography.” She interrupted me to offer that it was also in “auto-injector.” Auto-injectors are a huge part of our daily life and are here to stay.
What I want to do is something useful, something concrete. I don’t know what that is yet but I wanted to put this out there for discussion before I talk myself in too many circles.
Now that I’ve railed on for several hundred words my blood pressure is calming and I can see myself refilling our prescription for the Auvi-Q because I don’t feel like I have a choice. I am suddenly presented with the thought that refill time is an especially sensitive time for food allergy families because it often coincides with an anniversary of a diagnosis. I remember so vividly getting the call that my daughter’s blood test results were in and I needed to immediately get her an EpiPen. With that in mind, I want to look back next year at refill time and have accomplished something even for just one other family who may be struggling to afford epinephrine but doesn’t qualify for assistance that may already be out there.
Road trip to Canada, anyone?
Update: 3/23/15 – Check out Danya Glabau’s post – Pricing Health: Skyrocketing Prices for “Drugs for Life” – she eloquently brings her perspective as a social scientist to the pricing issue.