A Contract of Adhesion (or: Paying for Priceless Medicine)

A Contract of Adhesion (or: Paying for Priceless Medicine)

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 Next?

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.

UPDATE – Epi-Pen and Auvi-Q Expiration Dates

(Note: see my latest post about the cost of Epinephrine here)

I wrote to both Mylan (EpiPen) and Sanofi (Auvi-Q) and shared my previous post “Epi-Pen and Auvi-Q Expiration Date Frustrations” along with the wonderful and informative comments I received from readers and received the following responses I wanted to share here.  Please, depending on which product you purchased with an expiration date that was unsatisfactory, read below (for Auvi-Q purchasers, you may be able to get a savings card that offers an up to $400 benefit and for EpiPen purchasers, be sure to call customer service).  Both companies understand that expiration dates are very valid concerns for purchasers of epinephrine auto-injectors.

AuviQandEpiPen
Child doses of Auvi-Q and EpiPen

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Epi-Pen

From makers of the EpiPen, Mylan Specialty:

To help facilitate consumers providing us with the necessary information, please share our customer service contact information. Consumers can call Mylan Customer Relations to speak with a representative at 1-800-395-3376 or email at Customer.Service@mylan.com.

We also wanted to provide additional information related to product expiration dates to support you and your readers.

When picking up epinephrine auto-injector prescriptions, we encourage patients or caregivers to check what is dispensed at the pharmacy prior to leaving. If there are concerns about the expiration date, they should speak to the pharmacist immediately.

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Auvi-Q

From makers of the Auvi-Q, Sanofi:

Patients or caregivers who, within the last 31 days, purchased an Auvi-Q that expires in less than 12 months are eligible to receive a savings card with a maximum benefit of $400 off one two-pack of Auvi-Q for each Auvi-Q purchase that meets the terms and conditions. Savings cards are valid for useJanuary 1 – June 30, 2015.  Patients or caregivers who purchased an Auvi-Q in the past 31 days with 6 months or less of dating may receive a replacement Auvi-Q or they can opt to receive a savings card.  For more information, including terms and conditions, patients or caregivers should call Sanofi Customer Service at 1-800-633-1610.

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Our collection of expired Epi-Pens and Auvi-Qs, the ones in the belt are current through early next year.
Our collection of expired Epi-Pens and Auvi-Qs, the ones in the belt are current through early next year.

In the meantime, it is my understanding that both companies are following issues about epinephrine expiration dates and are taking all consumer comments and concerns into consideration.  They want to hear about issues people may or may not be having as they get prescriptions filled.

No matter what hurdles you face in filling the prescription, by the way, you need to be carrying epinephrine.  See this great post by “Marketing Mama” Missy Berggren: Why do people need to carry EpiPens? Why not just call 911?

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Disclosure: I attended Mylan’s Summit in April but my opinions are my own – more detailed disclosure here and here.  Sanofi and Mylan have both been sponsors of the Food Allergy Bloggers Conference, of which I am a co-owner.  My opinions, as always, are my own and are not representative of my position at Food Allergy Bloggers Conference LLC or the real or perceived benefits from either company.  Representatives from both will be at the conference this September 2014.

Mylan Summit 2014 (and My Trip to Washington, D.C.!)

I’ve created a new Disclosures page to cover in greater detail what Mylan Specialty covered for the trip I’m about to discuss as well as other benefits I’ve received related to this blog.  Their provided disclosure is as follows but I didn’t think it covered everything a reader might ask about so feel free to scroll to the bottom of the disclosures page for more detail (though there is a spoiler in there about the DC leg of my trip that I covered myself):

I disclose in any communication made by me about EpiPen® (epinephrine) Auto-Injector and/or the Mylan Specialty Blogger Summit that such communication is at my own discretion and based on my own opinion.  I also disclose that my travel expenses were compensated by Mylan Specialty in exchange for evaluation and feedback on information presented during the meeting.

It is odd to say on the one hand my opinions are my own (they are) but in reality I do think I left the summit with a more favorable opinion of Mylan Specialty than before.  I don’t think it was because I had my travel covered as much as the act of traveling there and meeting with people passionate about food allergy awareness and advocacy in conjunction with their product (the “EpiPen”) did impact me.  I can see now why Jenny‘s story of starting the Food Allergy Bloggers Conference began with her experience gathering with other bloggers at a prior incarnation of the summit.  When she approached me about helping her bring the conference to life, she even said that she wanted the experience of connection and education to be available to not just the invited few but a broader audience.

It was such a boost to visit with some wonderful advocates on April 10th and 11th.  They say much of business is conducted before or after actual business hours in the form of relationship building but like true multi-tasking food allergy moms we made every minute together count.  Studious notes were taken, suggestions were made, and there were more than a few laughs thrown in for good measure.

So!  My husband points out to me that there’s the regular, concise way of saying things and then there is the “Homa” way.  I’m going to go with the latter though never fear, I won’t be pasting my type-written notes from the summit for readers to get through.  Thank heavens for small favors, right?  I won’t overload any of my e-mail subscribers with this full post because it is l-o-n-g so here’s the debut of my first ever “read more” tag on the blog, something I really can’t stand on other sites but I’m hoping you will click through and I promise it isn’t a pageview grab or anything.

Continue reading

Stock Epinephrine in Nevada Schools and Onward to Restaurants and More

Today, thanks to a heads up from Caroline of GratefulFoodie.com, I was able to attend the Nevada Legislative Committee on Healthcare Interim Legislative Session hearing.  In Nevada, we only have legislative sessions every other year.  Last year was a great year for food allergy advocacy as Senator Debbie Smith championed Senate Bill 453 regarding Stock Epinephrine in Nevada Schools.  The bill eventually passed with unanimous votes in both branches of the state legislature.

pre
Getting Ready to Start

This was not my first time on the fourth floor of the Grant Sawyer Building near downtown Las Vegas but it certainly was my quickest visit as our contingent was called up right after the public comment section of the meeting.  I was able to visit a bit with representatives from Mylan (makers of the “Epi-pen” epinephrine auto injector) and their Nevada lobbyist as well as the co-leader of our local Food Allergy Parent Education Group, Susanne Stark, Senator Debbie Smith, and Chef Keith Norman of the South Point (and most recently board director at FAACT).

SenS
Senator Smith Addressing the Committee

Senator Smith began by letting the committee know about the success in the last year with stock epinephrine in Nevada. She poignantly told of how when the bill passed we did not know when it would be needed but now we did (Andrue Casado being one of the lives saved). The work is not yet done, she cautioned, because access can extend to restaurants.  Colin Chiles of Mylan would next expand on this point by referencing other states where unique situations were covered like New York summer camps and Alaska hunting guides carrying stock epinephrine.

KandS
Susanne Stark and Chef Keith Norman Speaking About Expanding Stock Epinephrine

Susanne followed with her account of the uses of stock epinephrine in private schools that were open to acquiring it and how in Clark County, Nevada alone there had already been 20 uses of stock epinephrine since the bill passed last summer.  Keith spoke about his experiences in food safety and the need for epinephrine in restaurants and the like.

Kacey
Kacey Larson Offering Testimony from Carson City via Video Feed

Attention turned to Kacey in Carson City, brandishing the front page of the Reno Gazette Journal featuring Andrue Casado and how his life was saved when he had his first ever anaphylactic reaction at school in Reno. After some closing remarks by Senator Smith, the committee chimed in with their words of support and personal experiences with food allergy. Senator Jones and Senator Dondero Loop had direct family connections. Senator Jones’ wife recently had an anaphylactic reaction and Senator Dondero Loop’s family member navigated food allergy at a time when epinephrine autoinjectors were not prevalent or the norm.

From Left to Right: Senator Debbie Smith, Homa Woodrum, Keith Norman, and Susanne Stark (Courtesy of Susanne Stark)
From Left to Right: Senator Debbie Smith, Homa Woodrum, Keith Norman, and Susanne Stark (Courtesy of Susanne Stark)

We laughed at taking a “selfie” after the hearing but I think it is a great way to make sure everyone is in the photo. Thank you for sharing this photo, Susanne! I care deeply about each of these great individuals and get chills just thinking of the difference each of them is making in their work. Senator Smith for her work for Nevada, Susanne (and her co-leader Debbie Bornilla) for the parents and the community in Las Vegas as a support group leader, and Chef Keith for making so many happy and safe.

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After the hearing Susanne raised the question to Mylan’s representatives about expiration dates on epinephrine (we were advised to feel free to return Epi-Pens with shorter than one year until expiration when issued as the pharmacy can readily exchange them for “fresher” stock).

Excitingly for me, Colin informed me the Mylan headquarters in Pennsylvania are a great space as I am traveling tomorrow to Pittsburgh to see it for myself at the invitation of Mylan. I was not sure if I could/should accept the opportunity when it was offered to me a few weeks ago but I think what I learn could be useful to the work we are doing in Nevada. Granted, this will require a lot of disclosure on my part as my plane trip, transportation, hotel, and meals are being covered and that does create the appearance of bias but hopefully longtime readers will know that I value my editorial independence. I look forward to sharing my experience especially since it will be my first time away from my children overnight (well, except for the night I was in the hospital in labor with my son and my daughter was home with my mother in law).

I will miss my kids tremendously and am very nervous about all the new social situations but there’s a sliver of excitement about the trip and getting to see the other attendees at the “Mylan Summit” April 10-11. Here we go!