*I attended the Mylan Blogger Summit meeting last week (May 2015) in California. Mylan paid for all of 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 opinion.
When I started my blog in 2011, I had no idea of the friends, adventures, and support it would bring me. I started it to help others, which, in a karmic twist, ended up with it helping me. Now before I get teary thinking of all many wonderful people I have found through blogging and social media, let me tell you about my recent experience attending the 2015 #MylanEvent.
This was the forth Mylan blogger summit I have attended since 2013. There is always a thrill wondering who will be in attendance! My Starstruck moment came that first year when I actually met Cybele Pascal! Her cookbooks saved my sanity when we started eliminating more and more foods in Jacob’s diet! (I may or may not have gotten teary thanking her!) It was the second Mylan Summit when Caroline Moassessi of Grateful Foodie and I had that fateful dinner together, and she planted the seed about me “doing a conference” ~ The THIRD annual Food Allergy Bloggers Conference will be this November in Denver Colorado! But I digress… The point is, these attendees are passionate, advocates and parents, who blog, read, research, and listen to all of our readers issues and concerns. These women are smart, and compassionate, and we have a chance to have our thoughts and opinions heard, by people who have the power to help us make improvements to managing allergies and anaphylaxis. If you doubt the power of that, let me share what happened last year: The [American] Red Cross shared a training they had for treating anaphylaxis. It was grossly inaccurate, and those of us in attendance began tweeting, writing and sharing the issue and how to remedy it. The course is being re-done based on this feedback.
L-R: (Kelly Rudnicki, Jenny Sprague (Me), Cybele Pascal, Keeley McGuire, Libby Ilson) I will list all bloggers at end of this post! (also in right photo are: Sharon Wong, Tracy Hancock-Bush, Dr. Martha White, Kimberly Pellicore, Caroline Moassessi, Rachael Haden, Elizabeth DiBurro, Colette Martin, Missy Berggren)
We enjoyed a nice dinner the opening night at the Grand Californian Hotel, which gave us a chance to catch up with each other, and to chat about allergies, issues, and life in general. Monday morning we hit the ground running. Our topics started by addressing all the new Legislation for Access to Epinephrine, being introduced in many states. At this time 47 states have adapted Access to Epinephrine in Schools, and 15 States have passed Access to Epinephrine for Public Entities legislation! (Yes- I took part in this process for my state of Maine as well- and DO need to post about that too!)
Mylan/Disney Partnership: Mylan has partnered with Disney, so that now in ALL parks, and printed on the maps, you can find Epinephrine available at the first aid stations. Now, for allergy families, maybe you are thinking, “Hey- when and IF I am going to Disney- I am bringing at least 2-4 Epinephrine injectors with me on that trip” ~ Which you SHOULD! ~ But the catch is, the number of people we are seeing that are having first time reactions, with no previous diagnosis nor injectors, are using and being helped by having the unprescribed injectors available. We all know that when treating anaphylaxis, time is of the essence- We MUST use epinephrine early, (preferably within 7-15 minutes of the exposure) to stop a reaction. We have heard too many cases where delay or failure to give epinephrine results in death.
Epi4Schools Survey: We heard from Dr. Martha White who shared the findings from the AAAAI meeting which went over the results from the 2013-2014 Epi4Schools Survey results.
- >40,000 Schools Registered with the Epi4Schools program
- 77% of surveys were filled out by school nurses
- 11% of schools reported a total of 919 anaphylactic events
- 852 events = 757 were students, 84 were staff members, 5 were visitors
- 22% had no known allergy!
- 636 people needed to use an EAI, 310 of them used a stock EAI (49%) and 289 used their own (46%), and 4% had another EAI.
- 54 people needed a second dose (9%)!
The facts that really stood out for me were these:
Antihistamines were administered in 157 (77% of 215) of the events NOT treated with Epinephrine. In spite of ALL the recent studies and knowledge that antihistamines WILL NOT STOP ANAPHYLAXIS!
24% of individuals (215 people) were not treated with Epinephrine, and 17 (8%) received no treatment!
20% Were NOT taken to the hospital!
Clearly there is still much work to be done educating schools, nurses, and families about treating anaphylaxis. This is why having an anaphylaxis care plan is so important. You can check out the Anaphylaxis Tool Kit for more information, or I also recommend AllergyHome‘s website (Run by two allergists- this is a terrific resource!) We also did bring up the issue of cost of epinephrine. There are Zero Co-Pay/ or $100. off- cards being offered by both epinephrine auto injector manufacturers, but for some people who fall in the gap between to rich for medicaid, and too poor for decent insurance prescription coverage- this can still be an expensive necessity.
If you want to read the twitter feed from the event you can search #MylanEvent ~ The tweets were flying! As is bound to happen when you get a bunch of Bloggers in a room together!
On Location Campaign: We next learned about the new campaign Mylan is running, the EpiPen® On Location™ campaign, a national call-to-action for those living with potentially life-threatening (severe) allergies and their caregivers to understand the importance of avoiding allergic triggers and having access to two epinephrine auto-injectors, such as EpiPen® (epinephrine injection) Auto-Injectors, everywhere they go. To help get the word out, three On Location Ambassadors are sharing personal stories of how they manage severe allergies:
- “Project Runway” judge and Marie Claire Creative Director Nina Garcia has a son who lives with severe allergies to peanuts and tree nuts and was diagnosed as a young child after experiencing anaphylaxis.
- Chef Amanda Freitag was diagnosed with a severe allergy to hazelnuts as an adult after experiencing allergic symptoms prompting her to see an allergist.
- “Girl Meets World” actor Auggie Maturo and his parents work together to manage Auggie’s severe allergies to tree nuts, peanuts, sesame and coconut.
We got to meet Auggie and his mother, Maha. We were moved listening to Maha talk about her son’s anaphylactic reactions. There is a common bond, that instantly unites us all, the shared understanding among food allergy parents, the fear, and anxiety that runs as a constant undercurrent to our daily lives, in both the fear and management of allergies.
Dining at Disney: We then met with Disney Chef Bill Orton, who spoke about the training that Disney staff under goes, and he showed us the new Allergy-friendly menus that they have created for all the Disney restaurants. We were most impressed with the inclusive feel of the menus, but did express concern that guests may find it confusing as we are so programed to read “Contains:” allergens. The Disney menus say the dish then “For X,Y,Z allergies” Meaning if you are allergic to “X,Y,Z” you can eat this dish. Disney Chefs do an amazing job handling accommodations for allergies or restricted diets. If you are going, it is suggested to call ahead of time to let them know, be sure to tell your server of your particular allergies, and do not hesitate to ask to speak to the chef!
For Lunch we went “on Location” into the Disneyland Park, where we first went to check out the First Aid station. They are clearly marked with Epi-Pen signs. Then onto to Carthay Circle for lunch, where we were all intrigued by the menu offering for “Rose Soda” however most of us agreed afterwards it tasted rather like licking a bar of rose soap. ~I guess rose is not a flavor I happen to enjoy! 😉 I did enjoy my Wildberry Lemonade!
After lunch we were escorted on a tour of the new Carsland in the Disney California Adventure Park. It made me sad I could not have my boys there- because they would have loved it! We had a blast getting to ride the Cars “Radiator Springs Racers” roller-coaster type ride. After which we were free to explore the parks which gave us all ample time to pick up souvenirs for our kiddos at home.
It was a wonderful event to get to attend, and I am so grateful to Mylan, for thinking I am worthy of participating, and to all my fellow attendees, my dear friends, whom I do not get the pleasure of seeing nearly enough! Amazing ideas get discussed when you gather such passionate intelligent people together! Until we meet again (perhaps at the Food Allergy Bloggers Conference in DENVER!)~XO!
*I attended the Mylan Blogger Summit meeting last week in California. Mylan paid for all of 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 opinion.