Sunday, January 29, 2017

Mylan, Are You Listening?

I admit, the summer of 2016 was VERY intense with all of the Mylan/EpiPen issues that popped up and swirled through every source of social media for weeks. For many/most people within the food allergy community, it became a topic of discussion, anger, disappointment and (sadly) even a way to achieve higher ratings on certain social media platforms. Whether it be radio call-ins, interviews or simply discussing my thoughts with concerned food allergy members, I didn't do it for attention or ratings- I did it to protect everyone's right to stay safe and, in some cases, to stay alive. After all, how can anyone put a price tag on a person's life? How can anyone produce a life-saving medication only to seemingly turn their backs on those who need it? How can a company know how much power they have only to wind up saying they didn't know? I have met families who cannot afford to have their child carry epinephrine and honestly, for each person that I meet that has this dilemma, I automatically associate their family with mine. It doesn't matter that we are not related, it doesn't matter that we do not have the same blood running through our veins or have the same thoughts about anything else- what matters to me is that another child or person could potentially loose their life. I can't be that person who doesn't try to help. I can't be that person that stays silent. Even if all I can do is to write about it or sign petitions - I will do that for every single person who needs it to be done. That is my duty to my food allergy community.

Now? Why Now? Recently, Mylan offered an interview to CBS News after so many months of no response at all ( or, very little). While people were screaming, asking for answers we got none. The air was silent and we were all left in the dark with nothing. Mylan Pharmaceuticals, the company who had done so much good for the community in the past just left us with unanswered questions and a graph chart that didn't show any sign of remorse or empathy for those who needed it. We watched as the questions were unanswered still when the Senate wanted to stand up for us. And we watched months later, after a lot of backlash, when Mylan "suddenly" had an alternative option of a cheaper generic product. Then there was more silence.

A few days ago, the silence ended. Mylan CEO Heather Bresch spoke with Norah O'Donnell of CBS and claimed that "What I realized, and what I went through this summer- EpiPen was a window into a broken system. And what I've conveyed, and I believe the discussion continues to validate, this isn't an EpiPen problem. This is a health care problem."

Why this response now? Five months later, a hearing and a new year that brings multiple new auto injector options, why now?

My Opinion These are just my opinions, I don't claim to speak for anyone else.

Dear Mylan,

This may come across as the whiny person that will never be satisfied but it's quite the opposite. I know you are trying to appease us. I know you are (most likely) wracking your brain to figure out how to get back into the food allergy community on the best of terms. But (yes, BUT) this statement doesn't sit well with me. Who am I? Maybe just a a tiny speck within billions but I am still one of the mothers who doesn't want to watch her son die nor do anyone else's. I feel that this train of thought in the interview is not based on helping others, it seems that it's still based solely on how Mylan can continue on but still not answer the unanswered questions. It's all well and good that you are trying but (yup, another but) I take offense to the statement above. You see, while you were sitting quietly the rest of us were fighting for answers and change. We were coming together to rally for keeping each other safe. We were petitioning to ensure that everybody knew what was going on with the price increases and that it wasn't simply a few people complaining. Where was your voice then? Where was the support when we asked for it?

Your statement "EpiPen was a window into a broken system" doesn't resonate well with me. Perhaps I am over thinking it just a bit. I just cannot shake the feeling that this new effort has nothing to do about supporting your customers and it has everything to do with you trying to sweep the previous concerns under the rug and fast forwarding to a crusade that was not started by EpiPen. In fact, it was started by the community who rallied for this change. Is your company large and powerful? Yes but our community- our community that is made up of other "me's", other tiny specks that came together and got the information out, not you. In edition, regardless of what was broken or needed to be fixed the fact still remains that nobody forced you to continually raise the price of EpiPens. Nobody. I apologize if this seems harsh and abrupt and I sincerely hope that Mylan will do better going forward but stating that your secretive ways were the window for change- not quite correct. Did the controversy force your company to seek change? Yes but it wasn't because of what you did or didn't do, it was because of the public.

Mylan, I am thankful that you finally spoke out and I am grateful that you are stating that you now want to be a part of the solution rather than the problem. All I ask is that you choose your words wisely as well as your actions. We expected great things from you and we will accept nothing less.

Thank you~

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