Friday, August 26, 2016

The FAACT Is, You CAN Help the EpiPen Issue

I want to begin this by first applauding each and every person that has helped to voice their opinions regarding the EpiPen cost issue. It doesn't matter if you have been in an article, on television, shared posts or tweets- whatever you have done is another voice that has been heard. I cannot repeat it enough- our food allergy community is a tight knit extended family that takes care of each other. My child is your child. Your aunt who had a close call with an allergic reaction is my aunt. There is not one person that doesn't immediately feel a personal connection with another who shares their food allergy ups and downs. I want to say thank you from the bottom of my heart and soul to all of you- I am truly blessed to be a part of this powerhouse of a village.

Cost is Still an Issue After constant media blasts and outrage, Mylan finally released their form of a response to our questions and comments. They came forward and offered some new options to help the situation which include a larger copay card discount of $300 per EpiPen prescription, continuing the EpiPen4Schools Program and there is some talk of trying to give consumers a direct ordering of EpiPens from Mylan rather than the usual pharmacy route (statement here). This is a start BUT, how many of you are satisfied with this response? I will be honest and say that I am not and this is why:

  • The $300 Copay Discount Card Option- (deep breath) Does this help some if not many families? Yes. However, this STILL is dependent on the same rules of the previous $100 copay discount card which means many will still not be eligible or won't even get close to an affordable price. A page member of mine shared her personal story of what happened when she went through this option: "We have a high deductible. Three weeks ago, using their $0 copay coupon would have cost us more for our EpiPens. I still do not totally understand it but the pharmacist printed us out three different pricing scenarios using Mylan's coupon, the pharmacy coupon and no coupon. The price of the EpiPen was still higher after Mylan's coupon than if we chose the other two options. How is that possible?" So, Mylan- care to explain?
    Photo courtesy Memegenerator.net
  • Patient Assistance Program- Yes, many of you may be asking "They have a patient assistance program?!" Which, again, is a great idea...if it worked.  Another page member shared her experience with this option as well " I am one of those people who no longer has an EpiPen since mine went out of date November 2015. For seven months in 2015, I was out of work with my health issues. I have multiple food allergies and am anaphylactic to corn. When I contacted Mylan to try to get an EpiPen through their program I found it quite extensive and confusing. I'm an intelligent person and I found it difficult to deal with them and forged through the paperwork. In my personal opinion, I feel they do this on purpose. They make it hard for people to do this application. The person who answered the phone made me feel uncomfortable like you're somebody looking for a free handout. I expected to speak with what would have been someone professional and non-judgmental. At the beginning of the call everything was going fine- the lady was all excited about telling me that there are discounts and that it's possible to even get EpiPens for free with insurance. Then when she heard I  did not have insurance her demeanor changed. They took my information and forwarded me the information on how to possibly obtain an EpiPen. It takes months to get through all the paperwork and if you are approved, then it gets sent to your doctor and you have to go pick it up. The application information was sent back earlier this year and I still have not heard anything from Mylan." Seems as if Mylan loves to look happy and helpful but skirt around giving some actual answerson many topics. 
  • Mylan Pathway Option- Ok, so explain this to me also- Mylan is going to create a "pathway so patients can order an EpiPen directly from the company, thereby reducing the cost". Am I the only one asking things like "How does that work if I need an EpiPen immediately- not in a week, not in two weeks and not in two months when the paperwork gets mishandled and it goes missing?" or "Um, your company has drilled into our heads that EpiPens are very specific about temperature control so how will they ship them without the threat of making the epinephrine unusable?" And no offense Mylan- why would you assume that most consumers would get a warm, fuzzy feeling with this? Mylan, if you are not quite sure where my concern for this option comes from, please reread the previous statement I shared above.

The Price OK, I don't run a huge pharmaceutical business but consumers are not stupid either- plain and simple, if Mylan has the power to increase the cost of an EpiPen, they also have the power to decrease it. Let's just be blunt about this- consumers do not care that you are running a business. Consumers do not care if you have supposed red tape here, there and everywhere to deal with (um, it's YOUR business that you purchased soooo it's something you need to deal with, that's why you get paid). Consumers also aren't buying into the excuse that you need to get back money for other things that your company has done. As anyone will clearly see on Mylan's website, they manufacture and market over 1,400 pharmaceuticals. It doesn't take a genius to understand that your budget can be adjusted accordingly. And by adjust the budget we do not mean the newest option that you have presented to us- we mean just lower the price of the EpiPens. And, in case you didn't hear it the first time or understand it let me repeat it for you again - JUST LOWER THE PRICE OF THE EPIPENS. Consumers understand it. Senators understand it. Hilary Clinton understands it. Multiple spokespeople understand it. So, Mylan- why are you the last to understand this? 

What Else Can We, The People Do? You can help gather more factual research by the click of a button. The Food Allergy & Anaphylaxis Connection Team (FAACT) is asking everyone to complete a brief survey to get more specific information on your experience with auto-injectors. This survey will gather not only the cost of auto-injectors from different companies but also pharmacy information, insurance coverage and copay information, school polices and a few other areas that are said to effect the cost of epinephrine. This information will be compiled to be able to increase our power as a community to move forward. The survey closes on Friday September 7th at 7 P.M. EST. This is, by far, one of the easiest ways to make your voice heard! Complete it and share it now- go to www.surveymonkey.com/r/FAACTEpiAnswers . Upon completing, please share with others and tag it using #FAACTEpiAnswers.

Be a part of the change and be someone who will be proud to say that they saved lives. 



4 comments:

  1. Very well written. It's not that difficult. Drop the price.

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  2. Tracy, thanks for all you are doing to shed the spotlight on this problem. I think after the NBC news appearance we can all say we know someone famous!!

    I do not disagree with what you have written, but want to add a few points in the interest of a complete story:

    Administrative issues notwithstanding, Mylan also announced in their press release yesterday that they were expanding the patient assistance program to 4X the poverty level -- a family of 4 making $97K or less per year would qualify.

    I think it's important to note that the issue of runaway drug prices is not just about epi-pens and not just about Mylan. There are many drugs that have skyrocketed in price. These tend to be lifesaving drugs because the market will bear the cost.

    In the US there is no regulatory body that focuses on drug prices. In fact, the biggest insurance provider (the government via Medicare and Medicaid) is prohibited from negotiating price with drug companies.

    Also, to round out the balanced perspective, no discussion of price can be had without discussing stockholders. Mylan's responsibility, first and foremost, (and whether we like it or not) is to the stockholders. That said, I do think they have hit the wall on the price that the market will bear.


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    1. I appreciate your thoughts but I am stubborn- I understand that stockholders are in a bind as well however, I'm sure they aren't feeling that wonderful with the way Mylan stock has been decreasing. There is also the factor that within the next few years, there are expected to be at least two additional epinephrine items coming to the market that (I feel) will give the EpiPen a run for their money (no pun intended) due to their smaller size and other perks that consumers find not so lovable about the EpiPen. Either way, I am grateful to be a part of such a wonderful community and glad you are a part of it too <3

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