Food Allergy Blogger Summit

Last week, I had the honor of spending time with an inspiring group of food allergy advocates, bloggers and researchers. Mylan Specialty, maker of EpiPen^®hosted a Blogger Summit* to lead an open discussion to share information and brainstorm ideas.

Click on linked names to visit the food allergy bloggers of this inspiring group.

Back row, from left: Keeley McGuire, Liana Burns of Asthma and Allergy Foundation of America, Jenny Sprague, Cybele Pascal, Lindsey Steffensen, Elizabeth DiBurro, Tracy Bush
Middle row, from left: Libby Ilson, Siobhan Cavanaugh of Mylan Specialty L.P., Kelly Rudnicki, Judy Morgitan of National Association of School Nurses, Dr. Ruchi Gupta, Lynda Mitchell of Kids With Food Allergies Foundation, Tonya Winders of Allergy & Asthma Network Mothers of Asthmatics, George Dahlman of Food Allergy Research & Education
Front row, from left: Joanne LaSpina, Ruth LovettSmith, Lauren Kashtan of Mylan Specialty L.P., Lisa Rutter, Sloane Miller, Heidi Bayer, Caroline Moassessi.

The focus on the summit was back-to-school, but any topic related to food allergies was fair game. The highlights for me included:

• 

  Dr. Gupta

  hearing from Dr. Rucci Gupta about efforts to establish a national registry to record anaphylactic reactions. Often these reactions may be documented as "wheezing" or "respiratory distress". Until we have accurate records, it is difficult to determine how many people are affected by anaphylaxis.

• discussing 504 plans with Judy Morgitan from the National Association of School Nurses  and Lynda Mitchell from Kids With Food Allergies . Any student has the right to request a

  

  Judy Morgitan and Lynda Mitchell

  504 Hearing to determine eligibility. Accommodations at school may include guidelines for hand-washing and/or a safe zone in the cafeteria.

• Updates from Tonya Winders, COO, of Allergy and Asthma Network (AANMA), Liana Burns, Manager of Policy and Programs at Asthma and Allergy Foundation of America and George Dahlman, Vice president of Advocacy for Food Allergy Research and Education (FARE). We learned how states vary in terms of access to epinephrine in schools and community

  

  http://www.aanma.org/advocacy/usanaphylaxis/

  emergency services. Check out AAFA's map to find out which US schools require stock epinephrine. Join in AANMA's advocacy efforts on behalf of all states and be on the lookout for news (and ways to get involved) of FARE's efforts in restaurant training, emergency services protocols and access to epinephrine in schools.

• reminders from Mylan Specialty of their continuing work to bring together people affected by anaphylaxis through programs like 25 Years of EpiPen^® featuring Adrian Peterson and Jo Frost, EpiPens4Schools and the Zero Dollar Co-pay Plan.

  

  Lauren Kashtan, Senior Manager
  Communications, Mylan Specialty

  (Isn't it terrifying to imagine dealing with food allergies before EpiPen®??? Twenty-five years ago, patients were told to avoid their allergic food, but in the case of accidental ingestion, get to a hospital immediately for treatment. Yikes!)

Besides all the learning, we enjoyed a fantastic dinner by Chef Kelvin at the Strand Hotel, insightful conversation with one another and a general feeling of hope and empowerment when it comes to food allergies. 

Thank you to Mylan Specialty for sponsoring this event and to Chandler Chicco Agency as well.

View of Empire State Building from The Strand Hotel Rooftop deck

*The information I share about the Mylan Summit is at my own discretion and based on my own opinion. My travel expenses for the summit were compensated by Mylan Specialty in exchange for evaluation and feedback on information presented during the meeting.

EpiPen With Zero Copay

EpiPen

Mylan, is one of the world’s leading generics and specialty pharmaceutical companies, and is also the maker of EpiPen^®

The company is celebrating 25 years of the auto-injector that is used to treat anaphylaxis due to a severe allergic reaction. The celebration means a $0 copay for families through December 31, 2013. This offer is valid for up to three EpiPen 2-Pak cartons or EpiPen Jr 2-Pak cartons per prescription, with an unlimited number of prescriptions until the end of the year. Before you go fill your next EpiPen prescription, head on over to Epipen.com and request a coupon for your $0 co-pay. 

I know this will benefit many of you who have no insurance coverage for auto-injectors or those of us who rack up a big bill on co-pays for multiple injectors.

Lemon Blueberry Cake- Yum!

This celebration calls for some cake. How about some dairy and wheat-free, egg-free, nut and peanut free cake?  

I do love a celebration!

Food Allergy Reactions on Valentine's Day

Candy Heart Molds

A recent survey sponsored by Mylan Specialty indicated that as many as one in three parents report their children with life-threatening allergies have experienced anaphylaxis on Valentine’s Day. This scary statistic underlines the importance of talking to kids before this Thursday's holiday.

Pre-School and Elementary-Age Children- Parents should talk to teachers and staff early this week about special events planned to celebrate Valentine's Day. From classroom parties and crafts, to food sent in for school parties, peanuts, tree nuts, chocolate and baked goods may be prominently featured. Remind young children about your food allergy rules (no eating anything unless it's been approved, checking with a safe adult if unsure, etc.) and make sure they are aware that Valentine's Day may mean that things are different at school this Thursday. Consider role-playing as a way to help them feel comfortable dealing with specific situations.

Teens and Young Adults- While classroom parties may be less of an issue at the middle school and high school levels, there are important reminders for this group too. Sometimes friends exchange Valentine treats and it may be tempting for a young person to "try a bit". This age group is particularly susceptible to food allergy emergencies because they want to fit in...they don't want to feel different. Again, talk to them before Thursday about your food allergy rules (no eating anything unless the label has been checked, carrying their medicine at all times, etc.). 

Food allergy reactions have been linked to kissing, so if you haven't had THE CONVERSATION yet, talking to your teen about dating and kissing near Valentine's Day may be appropriate.

Heart-Shaped Cake Pan

A little planning (and talking) early this week will help you and your family enjoy a safe Valentine's Day this Thursday.

Is your child's school still celebrating Valentine's Day with traditional parties and treats?

Food Allergy Blogger Summit

Last week I had the honor of mixing with a great  group of food allergy educators and advocates in New York City.  Lauren Kashtan of Mylan Specialty hosted our event and we had the opportunity to hear from Dr. Ruchi Gupta and  Sloane Miller (Allergic Girl) in separate presentations. 

There is such a warmth and joy in meeting "in-person". We were 16 bloggers and food allergy parents who all "knew" one another online, but sitting together and enjoying meals and talking directly to one another really was, well...priceless. 

And, let's talk about those meals for a moment. Chef Kelvin prepared the most delicious dishes for us. Several in the group deal with their own food allergies, so the ingredients for each dish were clearly labeled and the servers were ready and able to make sure everyone got a safe meal. The salad was delish, the ribs at dinner just melted in your mouth, and the chocolate cake...well, it was simply a little slice of heaven. Food allergy families should feel very comfortable eating from Chef Kelvin's kitchen. If you've got a New York City trip planned, talk to Kelvin (kfernandez@thestrandnyc.com) before you arrive and let him help you plan a great meal at The Strand Hotel.

I took lots of notes during the scheduled sessions and I'd love to share the ones that jump out at me:

• EpiPen turns 25 this year. It was approved in December 1987. Isn't it hard to imagine managing food allergies without having EpiPen?
• Over 20,000 schools are participating in the EpiPen4Schools program.
• Chicago schools used the slogan, "We're Prepared, Are You?" when rolling out their EpiPen4Schools program. This was an effort to ensure that parents continued to send in their child's medications and didn't rely on the school to have it.
• "Anyone can be allergic to anything at any time."- Dr. Gupta
• "I will not eat for someone, ever." -Sloane Miller
• People with food allergies need to communicate (about their allergies) in a clear and factual way. Be firm in tone, without question and without apology." (This is also from Sloane.)
• Parents need to gradually allow their growing food allergic children to own their food allergies. They need to be given opportunities to speak to their allergists, to restaurant staff, teachers, friends and others so they have practice in communicating and feel comfortable doing it as adults. (This is what I took from Sloane's talk). 
• "We finally have better insurance reimbursement for food challenges," said Dr. Gupta. The hope is that this will result in more allergists conducting food challenges, the gold standard in food allergy diagnosis.
• 30% of anaphylaxis has no skin symptoms (hives, redness, etc.) (Dr. Gupta)
• Using an EpiPen is a hard decision, more so because we are aware of the chain reaction that follows- ambulance, hospital, waiting to see if there will be a bi-phasic reaction. We had a great (and sometimes emotional) discussion around this. We wondered, could there be an anaphylaxis hotline to help provide support?
• Everyone at risk needs an anaphylaxis action plan. Talk to your doctor to come up with a plan that works and then make sure that everyone is aware of the steps to take.

A huge THANK YOU to Mylan for sponsoring this event, to our speakers (including Ritesh Patel who conducted a fantastic blogging workshop), to The Strand Hotel (especially Chef Kelvin and his restaurant staff) and to  my fellow attendees: Caroline of Grateful Foodie, Ruth from Best Allergy Sites, Cybele Pascal of The Allergy Friendly Cook, Tracy from AllergyPhoods, Elizabeth  - Easy Breezy Life, Missy  - The Marketing Mama, Heidi - Brooklyn Allergy Mom, Jenny - Multiple Food Allergy Help, Libby from The Allergic Kid, Lisa from No Nuts Moms, Irene and Sarah - Get Allergy Wise,, ,  Kelly- Food Allergy Mama, Kimberly- The Food Allergy Mom, and Lindsey Steffensen - Frugal Food Allergies.

We'll always have the Rooftop...

Auvi-Q Epinephrine Injector is Coming

Auvi-Q Epinephrine Injector

I first posted about a credit card sized epinephrine auto injector over two years ago. In a December 2009 post, I wrote about two brothers and their company Intelliject. I was most excited about the potential for this new product for teens and young adults. This age group often doesn't carry their epi injectors because it's "inconvenient". An injector smaller than a cell phone- now that sounded convenient.

Fast forward to last week when I had the opportunity to see this new product. I was invited to Sanofi's U.S. headquarters in N.J. to see Auvi-Q^® up close and to provide feedback to the team that has been working on bringing this product to the market. It was a fun day for me as I had an opportunity to hear from Dr. John Oppenheimer on the current state of anaphylaxis (more on that later this week). I also got a history lesson on the new product and shared lunch with some fellow food allergy advocates.

Auvi-Q is short for Audio Visual Cues. As the name suggests, the device carries both visual and audio instructions for use. As soon as it is pulled from the case, a friendly and calm voice begins walking the user through the steps. Here's what I really like about this product:

• the size- it's even littler than I expected and is smaller than my smartphone. My tween really liked the shape and size.
• the audio helper- everyone is nervous about having to use an auto-injector device. A voice guide really decreases anxiety.
• no need to swing device into outer thigh- with Auvi-Q, the user places the device on the outer thigh and pushes firmly.
• hidden needle- the needle in this injector goes into the leg and within one second retracts back into the device. There was always something about having to withdraw the needle that was unsettling. No accidental needle pricks to worry about here either!
• has been waterproof tested- the product can sustain some water and still operate effectively. It does contain a battery for the voice recording, but even if the battery no longer works, the injector itself will still operate and release the medicine.

Here's a little amateur video we made to show how easy it is to use:

Auvi-Q is FDA approved and scheduled to go on the market in the U.S. by the end of March 2013. At this time, the cost of the device is unknown, however, two active devices and one trainer will be the norm for prescriptions. Many epinephrine injector rules will remain the same, such as approximately one year expiration dates, a viewing window to ensure the medicine is a clear color, two different dosages depending on body weight and the need to be aware of temperature extremes.

Check out what some other food allergy bloggers are saying about Auvi-Q:
Grateful Foodie- Inspiring- We Met the Auvi-Q
AsthmaAllergiesChildren- Thoughts About the New Auto-Injector
Multiple Food Allergy Help- Auvi-Q Epinephrine
Amazing and Atopic- The Audio Visual Lifesaver 
Learning to Eat Allergen Free- AuviQ is Coming Soon

You can sign up to find out when Auvi-Q will be available, or keep an eye on Food Allergy Assistant for further updates. Let me know if you have any questions or comments. I am thrilled to have more options in the toolbox for managing food allergies and anaphylaxis.

Full disclosure: My travel expenses and lunch were covered by Sanofi, although I am under no obligation to review this product...but I just wanted to!