Archive for the Blog Category

Is Device Design To Blame for Incorrect Epi Adminstration?

Tuesday, April 21st, 2015 | Permalink

This past February I was honored to be a speaker at a training session for support group leaders in London. I learned a great deal about the commonalities as well as the differences in the ways we approach food allergy management. While in the UK, I met some amazing “mums” as well as wonderful professionals working in the field of food allergy. One such professional was Dr. Robert Boyle, a well-known and highly respected pediatric allergist. Of course, I took the opportunity to pick his brain about some of the concerns we see here in the Untied States. One such discussion was the effective use of epinephrine auto-injectors by patients. He let me in on some exciting research he was a part of regarding this very subject. He shared the results with me but I was unable to share them with you until his paper was published. Well, the paper has been published and I think the results could impact the choice of auto-injectors prescribed by doctors as well as the future design of epinephrine auto-injectors.

THE STUDY

In this study, patients were trained to use a specific device (Epipen or Anapen). All patients were able to successfully use the device after initial training.

THEN

They tested the patients’ ability to use the device under simulated anaphylaxis at 6 weeks and at one-year.

NEXT

They switched the devices and did NOT give training with the new device. (This is a real life scenario that we see here in the USA when insurance companies fail to cover a specific device.)

The purpose of the study was to find if device design (rather than just training) impacted the patients ability to correctly use the auto-injectors.

THE RESULTS

“we have shown… that successful adrenaline administration rates using Anapen and EpiPen are low during simulated anaphylaxis, and EpiPen use under stressful conditions carries a significant risk of digital injection.”

Success rates at the 6-week and one-year intervals were similar, hovering just below 45% for both devices used (Anapen and Epipen). Meaning that less than half of the participants were able to correctly use the devices at both the 6 week and one year mark, even given successful initial training.

The low success rate is consistent with another study done in the United States that indicated that patients need more training. However, in this study, the authors conclude that training may not be the only factor but rather device design may be greatly impacting the patients’ ability to correctly use the auto-injectors.

Here is the most significant piece of information for me:

“Over 90% of participants were able to successfully administer adrenaline using Auvi-Q without receiving device-specific training…”

The success rate for Auvi-Q was an astounding 90% WITHOUT training! Success rates for other devices without device-specific training were only 49%. Hopefully, it goes without saying, that training is very important, but this study has me pondering the role of device design as well.

Of course, this is but one study and I would love to see additional studies. However, I believe this information is important to share and has an impact on many of the discussions we are having here in the United States regarding use of stock epinephrine in restaurants, schools and other locations. Could Auvi-Q be a better option in these circumstances?

The authors believe this is worth discussing.

“the high rate of successful adrenaline administration which we found when participants used the audio-prompt device Auvi-Q, in a stressful anaphylaxis scenario and without prior device-specific training, suggests that Auvi-Q is an important advance in AAI device design and may even be suitable for bystander use in public areas such as schools”

Also of interest, were the ways in which people incorrectly used the epinephrine auto-injectors. The authors hope this information will help aid in device design.

The most common reasons for failing to use the auto-injector correctly were:

Failure to remove safety cap
Using wrong end of device
Not holding device in place long enough

I encourage you to read this study for yourself.

Does this information change the way you manage food allergies? Please comment below.

A special thank you to Dr. Robert Boyle for sharing this important study.

References:

Patients’ ability to treat anaphylaxis using adrenaline autoinjectors: a randomized controlled trial.

Umasunthar T, Procktor A, Hodes M, Smith JG, Gore C, Cox HE, Marrs T, Hanna H, Phillips K , Pinto C, Turner PJ, Warner JO, Boyle RJ.

Allergy 2015; DOI: 10.1111/all.12628.

Misuse of medical devices: a persistent problem in self-management of asthma and allergic disease

Bonds, Rana S. et al.

Annals of Allergy, Asthma & Immunology , Volume 114 , Issue 1 , 74 – 76.e2

Do You Know Your Epi?

Tags: allergy, anaphylaxis, Auvi-Q, Epipen, food allergy, management, patient, research, Robert Boyle, study, Success, treatment, use
Posted in Blog, In the News | 10 Comments »

FARE Announces College Pilot Program

Thursday, April 9th, 2015 | Permalink

Image of College of the Holy Cross, a participant in the FARE pilot program. (Image from news.holycross.edu)

Choosing the right college is an exciting and sometimes difficult prospect for any young adult. For those managing food allergies, it can especially challenging. Finding a college prepared and willing to accommodate food allergies can be just as important as the school’s educational offerings. That’s why I was thrilled to see FARE’s publication of the “Pilot Guidelines for Managing Food Allergies in Higher Education” as well as the announcement of a pilot program to implement these guidelines.

Twelve schools across the country have agreed to participate. This impressive list of higher education institutions are to be commended for being leaders in this movement to provide safe and accessible educational environments for those with food allergies.

College of the Holy Cross (Worcester, Mass.)
George Mason University (Fairfax, Va.)
King’s College (Wilkes-Barre, Pa.)
North Carolina State University
Texas A&M University
University of Arizona
University of Chicago
University of Michigan
University of Northern Colorado
University of Southern California
Valparaiso University (Valparaiso, Ind.)
Wesleyan University (Middletown, Conn.)

I look forward to hearing more about this program and I am very excited for the additional options that will be open to young adults entering college in the years to come. Thank you FARE for your commitment to the food allergy community.

Tags: college, FARE, food allergy, George Mason, guidelines, higher education, Holy Cross, King's College, North Carolina State University, pilot, Texas A&M, University of Arizona, University of Chicago, University of Michigan, University of Northern Colorado, University of Southern California, Valparaiso, Wesleyan
Posted in Blog, Food Allergies at School, Free Resources | No Comments »

Do You Know Your EPI?

Sunday, March 1st, 2015 | Permalink

By Gina Mennett Lee, M.Ed. FoodAllergyConsulting.com

As part of our Beyond Awareness Food Allergy Educational Campaign for 2015, this month we are focusing on knowing how to use your epinephrine auto-injector. This month’s campaign is hosted by friend and fellow food allergy advocate, Sharon Wong of NutFreeWok. Her blog post is an excellent read and thoroughly explains our campaign. Below I’ve provided my thoughts and a quick overview.

Why focus on epinephrine training?

A recent study from the University of Texas Medical Branch at Galveston found that out of 102 patients ONLY 16% used their epinephrine auto-injector correctly.

The most frightening statement was made by Rana Bonds, MD, ACAAI Fellow and lead author of the study.

“Most patients made multiple mistakes and would not have benefited from self-administration of the potentially life-saving treatment if the need arose.”

What can you do?

Be sure that you know how to use the epinephrine prescribed to you or your loved one.
Use an epi trainer regularly to make sure you remember. (Experts recommend at least every 3 months.)
Ask your loved one with food allergies where they keep their epi and if they know how to use it.

Please help us to spread this important message by tweeting, sharing or blogging about this topic. Please tag it with #FAEC15 and feel free to share a link to your blog post here.

Links to instructional videos can be found below:

EpiPen
Auvi-Q
Adrenaclick
Epinephrine Autoinject

The “Beyond Awareness Educational Campaign” was created by Gina Mennett Lee, M.Ed. of Mennett Lee, LLC. The purpose of the campaign is to harness social media to provide necessary education to the public regarding food allergy management. Caroline Moassessi of GratefulFoodie and Sharon Wong of Nut Free Wok have joined the campaign to provide an even greater reach. We hope you will join our effort by sharing the campaigns on your social media outlets. Together we can make a difference.

Tags: #FAEC15, #KnowYourEPI, consulting, education, epinephrine use, food allergy
Posted in Blog, Educational Campaign, In the News | 2 Comments »

LEAP Study is “Belle of the Ball” at AAAAI Conference

Friday, February 27th, 2015 | Permalink

By Gina Mennett Lee, M.Ed.

FoodAllergyConsulting.com

“What are you doing?” My husband asked incredulously. My eyes had been glued to my phone intermittently for hours over the weekend.
“Following the AAAAI Conference.”

“What is that?”

“The American Academy of Asthma Allergy and Immunology Annual Conference. I follow it every year to stay up to speed in the latest research. Docs from the conference are tweeting the most recent research and findings.”

As I snuggled into my home, fire blazing in our fireplace, snow falling outside for the umpteenth time this winter, some of the allergy field’s greatest medical minds were gathered to share information, debate current thoughts, and hob-knob.

Twitter is the closest I can be to a fly on the wall at the conference. It allows me access to the thoughts and notes of some of these doctors (some that I have pleasure of knowing) as they are listening to the speakers share their research and findings. Even better, it gives me a chance to ask questions.

I read, “favorite” and retweet furiously so I can refer back later and track down the research to read. Of course, I am partial to information related food allergies and anything relating to the school setting. I was also interested to see lots of discussion on more effective ways to treat asthma patients. I loved reading the tweets about the debate over whether or not OIT (Oral Immunotherapy) is ready for “primetime”. (Seems like the consensus was “not quite yet”.)

But, by far, the belle of the ball this year was the LEAP study.

The Learning Early About Peanut Study debuted as this year’s conference and the food allergy world was literally abuzz. Unfortunately, as this landmark study was released, so were a slew of misrepresentations on the actual implications of the study. Many people wrongly were proclaiming a cure and recommending people expose children with peanut allergies to peanuts.

Unfortunately, this study does NOT apply to the 15 million patients in the USA that already have food allergy.

It is, however, very promising as it indicates a potential to PREVENT peanut allergy in high risk infants. Further studies are being done to see if it applies to other allergens and what the long-term outcomes are for the patients in the study.

Below is a short video describing the thought behind the creation of this study.

For more information on the LEAP study, I invite you to read it as well as this excellent synopsis of it by Dr. David Stukus on the AsthmaAllergiesChildren.com website.

To see more of what I found interesting, you can read my twitter feed. Below are just a few examples.

Disclaimer: Tweets are but a snippet of the information. It is very important to find and read the research that interests you rather than relying on a tweet (or even a news article) to fully convey the information.

I am very thankful to all the doctors and other professionals that took the time to tweet at the AAAAI Conference as well as the dedicated research teams and patients involved in these studies. I hope all this excitement inspires you read some of the research and to follow along with me next year.

Tags: #AAAAI15, #LEAP, AAAAI, asthma, Dr. Stukus, food allergy, LEAP study, peanut, research
Posted in Blog, In the News | No Comments »

#WhereIsYourEpi Campaign Updates

Thursday, January 29th, 2015 | Permalink

By Gina Mennett Lee, M.Ed.

I am a firm believer that when we work together towards common goals, great things can be achieved. There is much work to be done in the food allergy community and it is going to take the hands and hearts of many to accomplish it.

In keeping with the theme of working together, I have two exciting updates to share with you:

1. News From KFA

Kids With Food Allergies will be hosting a year-long campaign named “WhereInTheWorldIsMyEpi”. The purpose of this campaign is the same as my #WhereIsYourEpi? campaign: to encourage those with food allergies to always have immediate access to their epinephrine auto-injectors. Lynda Mitchell, KFA Founder and Senior Director, called me earlier this week to share her campaign and to let me know that it had been in the works for months. Lynda Mitchell stated, “For those of us active in the food allergy community, we see the same concerns and gaps in education and awareness. This means that occasionally we’re going to find out we’re both trying to tackle the same issue at the same time.”

I think this is great news and I could not be more pleased that a wonderful organization like KFA will be devoting an entire year to this important educational campaign. To learn more about it, visit KFA’s website.

2. GratefulFoodie and NutFreeWok Join My “Beyond Awareness” Campaigns for 2015

Speaking of working together, I am honored to have Caroline Moassessi and Sharon Wong partner with me for the rest of the 2015 “Beyond Awareness” educational campaigns. We will be announcing a new campaign each month. Stay tuned to learn how you can become involved too! Feel free to contact me with any questions or leave a comment below!

Reminder: The #WhereIsYourEPI? campaign ends February 14th, so you still have 2 more weeks to get your submissions in. One winner will be chosen at random and will receive a $50 Amazon Gift Card. Be sure to share your photos here on my website, or on twitter (it must be tagged #WhereIsYourEPI to qualify. Thanks so much for participating!

Tags: #WhereIsYourEPI, allergy, Beyond Awareness, Caroline Moassessi, epi, epinephrine, food, gratefulfoodie, KFA, Lynda Mitchell, Mylan, nutfreewok, Sharon Wong, WhereInTheWorldisYourEpi
Posted in Blog, Educational Campaign, In the News | 3 Comments »

#WhereIsYourEPI?

Wednesday, January 21st, 2015 | Permalink

By Gina Mennett Lee, M.Ed.

FoodAllergyConsulting.com

Moving beyond awareness to education: Each month I will launching an educational campaign to help get important information about managing food allergies out to greater community. I hope that you will join me!

The educational campaign for February is #WhereIsYourEPI?

The purpose of this campaign is to emphasize the importance of having epinephrine immediately available at all times.

Did you know that a delay in using epinephrine for a life-threatening reaction (anaphylaxis) can have a huge impact on the outcome of the patient and can even result in death?

What research reveals:

The delay or non-use of epinephrine is risk factor for fatal anaphylaxis (more info here)
The later you use the epi, the higher likelihood of hospitalization (more info here)
In a recent survey, only 40% of those with life-threatening food allergies were carrying their epinephrine

No one plans to have an allergic reaction.

Reactions can happen ANYTIME, ANYWHERE. That is why it is important that those with food allergies ALWAYS have epinephrine immediately available.

LET’S TURN THIS AROUND!

How can you help?

Post the #WhereIsYourEPI? image (above) to social media.
Ask your loved ones with food allergies this important question and encourage them to always have their epinephrine.
Enter my contest. Let’s set a good example. Show us how you keep epi immediately available at all times (whether at home, at school or out and about) by posting a picture to my website or by posting to twitter and you will be entered to win a $50 Amazon Gift Card.*

* All twitter entries must be tagged with #WhereIsYourEPI? and @MennettLeeLLC to be considered. All website entries should be posted here. Not tech savvy? Send your submission to: gmleeconsulting@gmail.com. By entering the contest, you allow Mennett Lee, LLC to use your image. Contest ends February 14, 2015. Winner will be selected on February 20, 2014.

New Food Allergy Agenda: Moving Beyond Awareness to Education

Tags: #Where'sYourEpi?, anaphyalxis, campaign, contest, education, epinephrine, February, food allergy
Posted in Blog, Educational Campaign, Food Allergies at Home, Food Allergies at School, Food Allergies in the Community | 6 Comments »

Do PTA/PTO Events Need to Be Accessible Under Section 504?

Monday, January 12th, 2015 | Permalink

FoodAllergyConsulting.com

There is much confusion about whether or not PTA/PTO’s are legally obligated to make events accessible for students with food allergies (Please, keep in mind that the term “accessible” is going to be different for each child. ). I’ve asked Laurel Francoeur, Esq. to answer this question for us. This information only applies to schools that receive federal funding. We will be addressing these concerns and more in our new book, “The Essential School Food Allergy Handbook” (available Fall 2015).

The content below is written by Laurel J. Francoeur, Esq:

Many wonder whether a school must make Section 504 accommodations at PTO* meetings or events. Section 504 requires schools to make accommodations for children with disabilities throughout the school day, including PTO events that happen during normal school hours. However, when it comes to after school PTO events, it is not a slam dunk question. For a District to accommodate disabilities like food allergies under Section 504 during PTO meetings and after-school activities, the District must provide “significant assistance” to the PTO.

The District is considered to be providing “significant assistance” when the answer to one or more of the following questions is “yes”:

1) Does the District provide free or reduced cost to the PTO to use District facilities?

2) Does the District publically announce PTO events to the student body or parents?

3) Does the District disseminate flyers or other written communications about PTO events?

4) Does the District allow the PTO to identify itself with the school and use the school logo or name in or associated with its meetings and events?

This is the test currently used by the Office for Civil Rights. However, it may or may not be used by a federal court. This test is based on the regulations accompanying Section 504* and a case decided by the OCR called Irvine Unified Sch. District 19 IDELR 883 (OCR Apr 28, 1993).

OCR can also look to state guidelines about food allergies for assistance. For example, Pennsylvania has voluntary food allergy state guidelines that recommend schools accommodate students at PTO functions. Although the guidelines are not binding, they encourage PTO activities to be inclusive. Sometimes OCR uses these state guidelines to shape its decision.

Even if a school does not meet the test for Section 504 above, it may still have to accommodate children with disabilities under the Americans with Disabilities Act. This is a separate analysis and will be discussed in a later blog post.

*PTO refers to any parent-teacher organization.

Related links:

Food Allergy Tips for PTA Leaders Written by Gina Mennett Lee, M.Ed and Michael Pistiner, MD, MMSc

For more legal information, visit the Allergy Law Project.

Do you find this information helpful? Laurel and I will be addressing this and more in our new book, “The Essential School Food Allergy Handbook.” (Available Fall 2015)

Tags: 504, Events, food allergy, PTA, PTO
Posted in Blog | No Comments »

Advocacy Toolkit

Monday, January 5th, 2015 | Permalink

I am so excited to share this excellent resource from the Asthma & Allergy Foundation of America. This is a topic that is near and dear to my heart as a food allergy consultant. At the Food Allergy Bloggers Conference last September, I was honored to speak about advocacy with Caroline Moassessi, Laurel Francoeur, and Jan Hansen. So I was thrilled when I heard that Caroline helped to create this resource for AAFA. Her knowledge and experience are on full display in this toolkit. This toolkit includes information on how to effectively communicate your message, the legislative process, using social media for advocacy, and much more. It is a must read for any advocate. Download it, read it and share it!

Tags: AAFA, advocacy, anaphylaxis, Caroline Moassessi, food allergy, gratefulfoodie, legislation, state
Posted in Blog, Food Allergies in the Community, Free Resources, In the News | No Comments »

A Food Allergy Mission for 2015: Moving Beyond Awareness to Education

Thursday, January 1st, 2015 | Permalink

As 2014 comes to a close, it is a natural time for reflection. In addition to making resolutions in my personal life, I have been thinking about our food allergy community and all that has happened this year. There were high highs like Sean Parker donating $24 million to the cause, and the new and exciting research regarding food allergy therapies. But there were also some very low lows. The ignorance on display in Clawson immediately comes to mind. The lows that tend to impact me most are the stories of food allergy deaths and the many calls and emails I receive from parents worried about exclusion and safety issues at school. Most of these lows seem to have one common denominator: education.

When I first entered the world of food allergies, about a decade ago, there was little awareness of food allergies. People had “heard” of peanut allergies but not much else. It was important to bring awareness to the facts that: one, people can be allergic to any food; and two, food allergies can be life-threatening. But in the years since, I’ve seen a much greater need to move beyond awareness and to focus more of our efforts on effective and meaningful education. Misinformation can be more dangerous than no information at all, and this is especially true for food allergy.

Misinformation can be more dangerous than no information at all, and this is especially true for food allergy.

So in the spirit of making resolutions for the New Year, I hope we can all resolve to work together to make EDUCATION the mission for 2015.

Here are What I View as the Top 5 Educational Priorities:

The importance of food allergic individuals having epinephrine immediately available at all times
How and when to use epinephrine
- Effective epinephrine auto-injector training,
- Emphasis on epinephrine as the first-line treatment for anaphylaxis
- How to identify symptoms of anaphylaxis
How to effectively implement the CDC Guidelines in every school, preschool, and daycare
How food allergies impact individuals, families and communities
How to include those with food allergies in their community

Additional Educational Priorities:

Food allergy testing and what it really means
How to effectively advocate for your child
How to effectively educate those around you
The concept of cross-contact (what it is and how to avoid it)
Methods of exposure to allergens
Labeling laws and their limitations

In the coming months, I will do my best to advance the goal of education. If all of us, in the food allergy community (doctors, nurses, non-profits, support group leaders, food allergy educators/consultants/coaches, parents, etc…) could focus on education with consistent messaging from vetted sources, I know we could make a true and lasting impact.

Will you join me? What do you see as a priority for 2015? Is there anything you add to this list?

Tags: Agenda, Awareness, education, food allergy, New, New Year's Resolution, priorities, Sean Parker
Posted in Blog, In the News | No Comments »

Nothing This Important Has Ever Been Easy

Tuesday, December 23rd, 2014 | Permalink

Yesterday, I wrote a short note to the parents in a facebook group I created specifically to address food allergies at school. Every day there are posts that parents share about their child’s struggles to be safely included at school. Along with the support and advice given, there is a great deal of anger, heartache and frustration. There is so much education that needs to be done in our medical facilities, our schools and our communities that often we can’t see our progress.

We are in the middle of a great a paradigm shift. As change-makers it can be a difficult road, but nothing this important has ever been easy. My dear friend, Caroline Moassessi asked that post my letter on my blog. So, here it is along with the quote I posted to accompany it.

Dear Friends:
I know that there is a lot of frustration out there due to issues at school. As a former teacher, I find it especially upsetting when I hear of these struggles. But I want you to know that we are making huge strides. I work with schools and parents from across the country and I do see a major shift from even a couple of years ago. Those shifts have to do with parents like you taking the time to build positive relationships with schools and other parents and helping to educate them. It takes time to advocate and the effectiveness of that advocacy has everything to do with our behavior, tone and message.
When you are in the middle of the change it can be difficult to see the end, but I know that with polite and firm persistence, these issues will become a thing of the past. I know because I have seen it work time and time again. Know what your personal goals are. Make sure you are taking advice from people that have been effective at advocating. Ask them if their strategies have actually worked before and what the outcome was. I know that some day we will look back on all of this and be proud to say that we were a part change that helped save lives.
Love to you all!

There is a even bigger message here and one that we all need to listen to, parents, doctors, nurses, teachers, and school administrators alike. We need each other. We are partners in this process. Parents need to understand the demands placed on teachers and administrators, the way that schools function and the needs of other students. Administrators and teachers can learn a great deal from listening to parents that have the experience of managing food allergies every day, all day. This is a complicated health issue and we need to work together to manage it effectively.

When we take a moment to view an issue or challenge through one another’s eyes, that moment is never wasted. It doesn’t mean that you will have the same perspective as the other person but it might help build bridges of understanding. It might even allow you to find some common ground and create solutions that work for everyone.

Posted in Blog, Food Allergies at School, In the News | No Comments »

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Archive for the Blog Category

Is Device Design To Blame for Incorrect Epi Adminstration?

FARE Announces College Pilot Program

Do You Know Your EPI?

LEAP Study is “Belle of the Ball” at AAAAI Conference

#WhereIsYourEpi Campaign Updates

#WhereIsYourEPI?

Do PTA/PTO Events Need to Be Accessible Under Section 504?

Advocacy Toolkit

A Food Allergy Mission for 2015: Moving Beyond Awareness to Education

Nothing This Important Has Ever Been Easy

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