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The Mylan Hearings

After the public uproar over the unconscionable price increase of EpiPens, Mylan CEO Heather Bresch was called to Washington. She was there to answer to Congressional Representatives, who she and her company went to a few short years ago, asking for their support to get stock epinephrine into schools.  It was not such a warm and fuzzy conversation as happened last time. Not at all. The line of questioning went much how I thought it would. Lawyers had coached Ms. Bresch well. I lost count of the number of times she mentioned “the unprecedented action of introducing a generic” product. There were many great questions, and there was pretty much one answer to all of them – they have raised awareness of anaphylaxis and access to EpiPens, as well as the price.

We, the allergy community in general, do understand that businesses are here to make money. I don’t think anyone will fault any business for that here in the US. The problem lies in the extreme price jump, when the reality is that the medication hasn’t changed in 100 years and the device itself hasn’t changed significantly in many years.  All the marketing and awareness is also something many of us are grateful for, because it does help us all. As a consumer, I don’t get to dictate Mylan’s budget. But if I could, perhaps I wouldn’t advertise on TV so much or take out as many ads, if that meant even a handful more people were getting this life-saving drug. It’s not worth the tradeoff to me – but I’m a parent of a child with allergies and not a CEO who makes $18 MILLION dollars. As one Representative mentioned, “I will never make $18 M in my entire LIFE serving in Congress.”

The problem is not only with Mylan.  The FDA was also in the hot seat yesterday.  The waiting period for drugs to make it to market stands at about 48 months (according to one statement). As of October 1, they are changing that to getting some “answer” to developers in 10 months, but the backlog of meds waiting to get through is staggering.  While the FDA does not get into the price-setting structure, they are just as culpable when they are not letting alternatives through to market.  We obviously need these devices to work flawlessly, or as flawlessly as possible (we all know in allergy land, nothing is 100% except our low or in some cases high anxiety surrounding food).  We don’t want a half-researched device making it into the hands of people for whom it can very well mean the difference between life and death. But we do want responsible manufacturers to be let into the system to help break Mylan’s virtual monopoly at 94% of the market.  94%, as one representative said, “doesn’t even pass the giggle test” when trying to deny Mylan’s stranglehold on us. They also refused to answer if, and more importantly WHEN, any new epinephrine products will be available.  I’m sure some of that has to do with legal issues and IP rights and things I can’t even begin to understand in the land of medical and government bureaucracy, so I won’t even try.

This isn’t JUST a Mylan issue. This isn’t JUST an FDA issue. This is a healthcare issue. It’s happening across the board. My child’s generic thyroid medication, for which I have paid $11 per 100 pills for the past 6 years, cost our family $65 two weeks ago at the pharmacy (and for only 90 pills now).  Martin Shkreli, Valeant, and now Mylan. This is the tip of the iceberg.

I spoke with my 9-year-old, who watched about 30 minutes of the hearings after school, if he had any questions about what he was hearing.  He seemed to get it. “How can they put a new label on it and sell it at half the price? Why can’t they make the price normal? It just doesn’t make any sense.”

 

From the mouths of babes.

Thanks so much Robyn!

Thanks so much Robyn!

Thanks so much Robyn!

Thanks so much Robyn!

Thanks so much Robyn!

Thanks so much Robyn!

 

I ❤️ Cleveland #turnitteal #terminaltower #cle #thisiscle

A photo posted by Sally Vinikoff (@sally1962) on

Terminal Tower turns it teal for food allergies! #turnitteal #foodallergyawareness #foodallergy #cle @kidswithfoodallergies @faactnews @foodallergy

A photo posted by TurnItTeal (@turnitteal) on

University East Building turns it teal for food allergies! #turnitteal #cle #foodallergyawareness #foodallergy @kidswithfoodallergies @aafanational @faactnews @foodallergy

A photo posted by TurnItTeal (@turnitteal) on

#NYC, my one true love ❤️. Photo from last Wednesday's @timeoutnewyork #TimeOutSummer @hornblowercruises cruise around the @statueellisnps 🗽 #dontsithome #iloveny

A photo posted by Don't Sit Home® (@dontsithome) on

 

My husband snapped this picture of the Empire State Building tonight lit up in teal for #FoodAllergyAwareness Week. Here's to spreading awareness, understanding, and compassion for those with a #foodallergy. #TurnItTeal

A photo posted by Gluten-Free & Nut-Free Living! (@theallergyfreewife) on

 

 

While we try to teach our children all about life, our children teach us what life is all about. – Angela Schwindt . 05.09.16 Twilight at The Reservoir, Central Park, New York City. . Last night the Empire State Building was lit in teal to honor #FoodAllergyAwareness Week . #artofvisuals #beautifuldestinations #cbviews #citypicz #everyday_shooter #Freedomthinkers #fantastic_shotzs #gottolove_this #globalcapture #igersusa #ig_great_shots #ig_myshot #inspiring_photography_admired #igpowerclub #igworldglobal #igworldclub #ig_sharepoint #ig_unitedstates #mycity_life #phototag_it #splendid_shotz #usaprimeshot #waycoolshots #weekly_feature .

A photo posted by Gigi A (@gigi.nyc) on

The Empire State Building is lit up with teal in support of FOOD ALLERGY AWARENESS. What a beautiful sight. Photo credit: Emily Wang. @emtrem9210 #TurnItTeal #empirestatebuilding #foodallergies #foodallergyfriendly #foodallergyawareness #health #cityskyline #skyline #lightswillguideyouhome #lights #awareness

A photo posted by Wizdy (@wizdygames) on

#EmpireStateBuilding is teal tonight in honor of #FoodAllergyAwarenessWeek (Photo taken by my mom)

A photo posted by Art of Dessert (@artofdessert) on

To support Food Allergy Awareness, Blair House is glowing in teal this week. #TurnItTeal #FoodAllergyAwareness

A photo posted by The Blairs (@blairapartments) on

The Arches at the PSC lit up in Torquoise! #TorquoiseTakeover #americanlungassociation #PacificScienceCenter

A photo posted by Collin Castañeda (@therealcastaneda) on

#turnitteal #foodallergyawareness #wellsfargo #dukeenergybuilding #dukeenergy #tealtakeover #teallove #allergymom #foodallergyfamily #charlotte #nc #momtographer #momtogs #nikonmom #reactwithrespect #foodallergyweek @foodallergy @turnitteal

A photo posted by Amber Soraseun (@4mb3rs) on

When you're an Allergy Mom, and the Duke Energy Center in your home town of Charlotte, NC is illuminated in teal for #foodallergyawareness, you drive into the city at 9:00 on a school night to see it! Thank you @turnitteal for making this happen and spreading awareness here in Charlotte! #turnitteal #foodallergyweek #kidswithfoodallergies #allergymomdepot #allergymom #allergymoms #FAAW2016 #foodallergyawarenessweek @foodallergy #reactwithrespect #tealtakeover #teallove

A photo posted by Allergy Mom Depot (@allergymomdepot) on

I think #lax #losangelesairport was turning it teal just for me today! #turnitteal #tealtakeover #foodallergy #foodallergies

A photo posted by Angela (@celiachashigirl) on

Zakim Bridge Boston May 14,2016

Zakim Bridge Boston May 14,2016   From a supporter. Love the perspective on this shot!

#Boston supporting #FoodAllergyAwarenessWeek at the Zakim Bridge #TurnItTeal

A photo posted by Perfectly Free (@wikifoodsinc) on

The Big Dam Bridge- Little Rock

The Big Dam Bridge- Little Rock

National Food Allergy Awareness Week! What a site to see! It's amazing to know there is support for those of us who must live with fatal food allergies. There is no known cause or cure. Hopefully with all of the support, we will be able to find some answers on what causes these allergies and a cure. #turnitteal #tealtakeover #tealribbon #anaphylaxis #anaphylaxisawareness #foodallergymovement #peanutallergy

A photo posted by M. 👑 (@fancypants1128) on

Day 2 of the Nature Photo Challenge: Niagara Falls turned teal for Food Allergy Awareness Week 👌 today I nominate @galnegunnar2 to post a nature photo for 7 days. More pretty Gotland photos coming my way! 😉 #turnitteal #foodallergies #niagarafalls #ontario #naturechallenge #waterfall #teal #canada #allergyawareness

A photo posted by Danielle (@danibarryy) on

 

Thanks Dawn

Thanks Dawn

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Thanks Naperville Oral & Maxillofacial Surgery

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Thanks to http://endallergiestogether.com for the lighting and http://www.foodallergykidsatl.org for the photos.

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Columbia Tower in Seattle Washington. Thanks so much Kate.
JFK Air Traffic Control Tower- Thanks Loren

JFK Air Traffic Control Tower- Thanks Loren

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Make A Wish Castle- New Jersey

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The Mississauga Clock Tower-Canadian Anaphylaxis Initiative

#torontosign #torontocityhall #cityhall #toronto #canada #ontario #firsttimeincanada #city #cityphotography #photos #photography #travels #places #happiness #life #tourist #snaps #ohcanada #streets #streetphotography #night #water

A photo posted by After Movie Diner (@aftermoviediner) on

Another addition from Canadian Anaphylaxis Initiative

Thanks to the Canadian Anaphylaxis Initiative for helping to Turn It Teal up north!

Thanks to the Canadian Anaphylaxis Initiative for helping to Turn It Teal up north!

Montreal City Hall May 15 2016 by www.ByeByeAllergies.ca

First time ever teal lighting of Montreal's City Hall, initiated by www.ByeByeAllergies.ca

First time ever teal lighting of Montreal’s City Hall, initiated by www.ByeByeAllergies.ca

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