Jun
06

Disclosure: This blog post outlines details from a Mylan Blogger Summit I attended in May 2015. Mylan (the pharma company that makes EpiPens) paid for my travel expenses and for my Disneyland Resort park ticket in exchange for my evaluation and feedback on information presented during the meeting. All comments made by me about EpiPen (epinephrine injection) Auto-Injector, Mylan, and/or the Mylan Blogger Summit are at my own discretion and based on my own opinions.

My love and drive to keep my daughter safe from her multiple, severe food allergies motivates me to learn as much as I can about anaphylaxis.

As a food allergy parent and advocate (see food allergy posts here), I occasionally have the opportunity to partner with various companies to help increase awareness of food allergies and anaphylaxis. Those of you who know me understand that I’m very cautious about these types of relationships and am very careful to make sure that the relationships are mutually beneficial. By this, I mean that I’m not willing to simply be a “mouthpiece” for a company in exchange for a free meal or, in this case, a free trip. There needs to be something compelling that will either help me to be a better parent/manage my daughter’s food allergies and/or allows me to help other families as an advocate.

I’ve been invited to attend multiple blogger events hosted by Mylan over the past few years. I’ve been able to attend one a few years ago in New York and, most recently, one in California last month. They definitely make these events worth my while because they give me the ability to:

a) Learn the latest news from experts in the food allergy community (doctors, researchers, etc.)

b) Provide feedback on important topics to food allergy families (such as using an EpiPen, traveling with food allergies)

c) Connect and build relationships with fellow food allergy advocates

As someone who works tirelessly to keep my daughter safe from anaphylaxis (a severe, life-threatening allergic reaction), events like these give me the ability to learn, advocate and work with others to make a difference — not only in my family’s life, but the lives of others as well.

Although we learned about a number of things during this visit, there are three things that stood out the most that I want to share with you: 1) An update on the EpiPens 4 Schools program 2) a new initiative at Disney Parks and 3) advocating at the event.

EpiPen 4 Schools Program Updates

Food is a common trigger of anaphylaxis and the prevalence of food allergy is increasing among school-aged children. Mylan created the EpiPens 4 Schools program to provide stock EpiPens for free for interested schools. This is to provide access to epinephrine for people who may have an allergic reaction and either not have their own epinephrine and/or did not previously know about their allergies. I’ve been very interested in this program and helped spread the word about it last year.

For the blogger event, Martha White, MD, reviewed the results of a survey of those schools who participated in the 2013-14 school year.

There were more than 40,000 schools registered with EpiPen4Schools program in 2013/14 year (amazing!) and 6019 surveys were completed from throughout the country.

Here are some of the results:

  • 11% of schools reported 919 anaphylactic events (more than one in 10 schools)
  • 69% of those who had anaphylaxis had a known allergy
  • 22% had of individuals had no known allergy
  • 75% of people who had anaphylaxis were treated with epinephrine
  • Of those who received epinephrine, 49% came from the schools stock epinephrine
  • Antihistamines were administered in 77% of the events not treated with epinephrine
  • 20% of patients who had epinephrine were not taken to the hospital
The data demonstrated that the stock EpiPens are making a big difference, and that they were used in many of the anaphylaxis incidents during the school year. If those people didn’t have access to EpiPens in that situation, there could have been very different outcomes (as anaphylaxis can be life-threatening and people die every year from severe food allergy reactions).  You can see a full report of the survey findings online here.

 

New Initiatives at Disney Parks

Disney is known for having a great approach to preparing food allergy meals at their restaurants. My family experienced this first hand at Disney World in Florida last year, when my daughter enjoyed a safe and delicious meal at one of their restaurants. At the blogger event, Disney Chef Bill Orton shared about their new allergy-friendly menus for the sit-down restaurants at the parks. The goal is to help people with food allergies easily identify which meals might be safe for their allergies. The chefs at the restaurants are still happy to come out to the tables to directly speak with guests about their allergies, food choices and safe meal preparation. Chef Orton said that last year they served more than 100,000 allergy-friendly meals and more than 650,000 at all Disney properties. This is a very big deal for families with food allergies and I’m very grateful for how well educated and kind they are about making people feel included and enjoy their day!

We also learned about Disney’s new partnership with Mylan to put EpiPens throughout their parks. The First Aid stations with EpiPens are now marked on park maps and there are EpiPen signs both outside and inside of the stations. For years, people in the food allergy community have been advocating for having EpiPens stationed in public places, similar to automated external defibrillators (AEDs) at schools, hospitals, malls and stadiums. The great news is that many States are now approving bills to make epinephrine available without needing to have a doctor’s prescription. Placing EpiPens throughout the Disney parks is one of the first initiatives to make this possible (in addition to the school program above) and will most definitely save lives! I’m very impressed by this partnership and give a lot of props to both Mylan and Disney for making it possible.

 

Advocating at the Blogger Event

The Mylan team was also interested in our experiences traveling with food allergies. The group shared our thoughts and experiences with airlines, hotels, restaurants and identify areas for improvement. As a large company with a wide reach, there are opportunities for Mylan to make a difference in this area – both in the travel industry and in how they support families with food allergies who wish to travel safely. This is a topic important to me, so it was meaningful to be able to share my thoughts and ideas. You can check out my posts Traveling with Food Allergies and 8 Tips for Flying with Food Allergies.

Finally, it was wonderful spending time so many wonderful food allergy bloggers and advocates. Here we are below, along with EpiPen® On Location™ Ambassador Auggie and Maha Maturo, from Girl Meets World.

 

Top row (left to right): Sharon Wong, Rachel Hayden, Kelly Rudnicki, Caroline Moassessi, Missy Berggren, Libby Ilson and Jenny Sprague. Bottom row (left to right): Cybele Pascal, Keeley McGuire, Elizabeth DiBurro, Tracy Bush, Maha and Auggie Maturo, Colette Martin and Kimberly Pellicore

You can find more of my food allergy posts, tips & recipes on my Food Allergy page. I’d also love to connect with you on my Marketing Mama facebook page and twitter. This post, and all posts on this blog, are written from my experiences as a parent of a child with food allergies. I am not a medical expert and encourage you to consult with a doctor on your personal medical situation.

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