Access to Epinephrine Testimony

Maine is late to the party in adapting the Access to Epinephrine laws. I have been watching with interest as this was first introduced in Virginia, then as more states adopted it. I cheered on my dear friends in  Nevada who worked so hard rallying support and pushing a MANDATED Access to Epinephrine law within their state~ A law that only weeks after it passed, SAVED A LIFE!!! Again in Michigan, as my friends, who live there and work so hard advocating and educating others, went through the process, finally posting on Facebook pictures of attending the ceremony signing it into law. Where was Maine, my home state, in the process?

I was contacted a few months ago when a school nurse shared with a local food allergy mom who follows me on Facebook, that there was some legislation being proposed and they were seeking input from school nurses. We both emailed Representative Stanley Short with our recommended changes. Then we waited. A few weeks ago we were emailed with information and the dates for the legislative hearing and public testimony to show support for LD 1727, An Act to Allow for the Stocking and Administration of Epinephrine Auto-Injectors in Schools.

This was it! Time to roll up our sleeves! I immediately emailed my friends Homa of Oh Mah Deehness, Caroline, of Grateful Foodie, and Lisa of No Nuts Mom Group to ask them their advice. I contacted my local fire chief to pick his brain about ambulance response times. He advised that I contact the Maine EMS  [Emergency Medical Services] and request statewide stats. I had never considered this, and found the information that they provided to me to be most interesting. I called two of the allergists my family see, to try to get them to come to the hearing, or to get a letter of support. I was pleased to learn that there is a statewide Maine Society of Allergy, which all our state allergists belong to. Our allergist, Dr. Carey, communicated with them and was able to gain a letter in support of the legislation! Then I needed to write my presentation. I drafted and built my own testimony based off of my friend Homa’s, as her testimony is shared on her blog Oh Mah Deenhees. (I teased her and said that there is no sense in reinventing the wheel~ so you will notice similarities and outwrite copying of some of her testimony.)

Meeting agenda

My presentation follows:

Good afternoon Madam Chair and members of the committee.  My name is Jenny Sprague, and I am a mother of 2 children with multiple food allergies. Additionally, I am on the school board for MSAD 15 serving the communities of Gray and New Gloucester. I am an active food allergy blogger, and also founded the Food Allergy Bloggers Conference for food allergy advocates and bloggers held annually in Las Vegas NV.  My older son has life threatening allergies to peanuts, tree nuts and dairy. My younger son has such an extensive allergy list- it would be easier to name only the 10-15 foods he can safely eat.  We carry multiple epinephrine auto-injectors for both boys, as well as a set for my husband who 4 months ago suffered an anaphylactic reaction at work after eating shrimp scampi at lunch. He was rushed to quick care for epinephrine shots. He had no previous food allergy, and growing up in Maine, was not a stranger to shellfish!

I come before you today to tell you why passing LD1727, An Act to Establish Guidelines for the Stocking of Epinephrine in Schools, is so important to me. Let us consider the fact that according to the CDC, 25% of anaphylactic reactions occurring in schools happened to individuals with NO previous food allergy diagnosis.

Additionally, the New England Journal of Medicine has indicated that four of six deaths from food allergy anaphylaxis occur in schools AND were associated with significant delay in treating reactions with epinephrine.  We are talking about mere minutes making all the difference between the life and death of a child.

Take into consideration how rural the majority of our state schools are, even from each other within a district;  and the fact that many of our Emergency Medical Services are staffed by volunteers. Within my children’s district, their schools specifically, it would take New Gloucester rescue 5-10 minutes to reach the K-2 school, and 12-15 minutes to reach the school for the pre-K, 3rd and 4th graders. For the child suffering an anaphylactic reaction, it can best be described as laying stuck at the bottom of a pool, waiting for someone to jump in and rescue you. More than a few minutes is too long to wait.

Passing this bill will protect anyone suffering from anaphylaxis due to allergies from foods, latex, insect stings, and exercise induced anaphylaxis. Consider as well that 1 in 10 children have asthma, which can cause more severe complications for those with both allergies and asthma; and that severe asthma attacks can also be treated with epinephrine.

In the face of over 2 million school aged children in the United States suffering from food allergies, it is important to note that (1) these are ever growing numbers, (2) many food allergies go unreported, and (3) food allergies can present at any time.

I am pleased that the Maine is not waiting for a tragedy to strike, for us to take action and to address the dire need for epinephrine in schools.  I understand that there may be concerns raised about licensed professionals administering epinephrine injections but as I can show you with this epinephrine injection trainer, administration of epinephrine is something that parents and patients are doing every day across the country.

I weep when I read of the death of a child from anaphylaxis. There were 16 souls lost last year alone.  88% of the deaths show significant delays or failure of administration of epinephrine. I do not want the burden of a child’s death in our schools or state to be what launches us into action. We buy smoke detectors, fire extinguishers, and vehicles with seat-belts and airbags- all with the hope we will never need them, but isn’t nice to know they are there when we do?

At our Food Allergy Bloggers Conference this past November, we invited Senator Debbie Smith, who had worked hard at getting a mandated Access to Epinephrine legislation passed in Nevada that year. She shared with us that mere weeks after the stock epi bill passed she received a call to say that a life had just been saved because of this legislation. You too could experience the feeling that you have made a huge difference, preventing a tragedy, and saving a life by passing this legislation! Imagine, if you will, a child has an anaphylactic reaction at school (and this could be something as simple as touching a pencil with nut butter residue and touching their eye or mouth) and their own injector malfunctions.  As written, this bill could save that child’s life if a school chose to keep an epinephrine auto-injector on hand and train in its use.

…Or save the life of a child who does not have an injector sent to school with them.

…Or save the life of a child that has their first ever reaction at school.

…Or save the life of a child that has a worse reaction than they are accustomed to.

I implore the committee to consider the young citizens of Maine whose lives can be saved if schools have stock epinephrine.  Their future is in your hands.

Thank you.

 

Representative Stanley Short, bill co sponsor, myself, and my son, Caleb.


Representative Stanley Short, bill co sponsor, myself, and my son, Caleb.

We went on Monday to present our testimony. I kept my boys out of school that day and brought them along. My older son Caleb was excited because he wanted to show everyone how to use his 2 different epinephrine auto injectors. He practiced his speech the night before. The session began at 1pm. Let me just say, that expecting a 4 year old and a 7 year old with ADHD tendencies to sit, quietly and well behaved for ANY length of time is a challenge. I will also say that from 1-5pm, my boys managed to be better than I could have imagined!! They did so great! Winning over the committee members and audience both! Because props are not allowed during the testimony, the Committee Chair opted to call a 10 minute recess to go into the lobby to hear Caleb’s presentation. I regret I was not able to get any pictures of this- so you will have to trust me when I say he was amazing~ Articulate, answered questions well, and was polite. (I was bursting with pride!) The committee members took some time and asked me a lot of good questions, and I believe they were pleased and impressed with our presentation. Granted LD 1727 is not mandated, the language is prefaced by “may” [a school may carry stock epinephrine]. I feel it could and should be stronger on some points, including requiring ALL school staff to receive training on how to recognize anaphylaxis, and use an auto injector.

8 people spoke in favor of the bill, 1 against, and 2 neither for nor against. I do not know if they will have more workshops on this. If so, I hope to be invited to attend and contribute to the matter. Now? We wait….hoping and praying that it wont take a child dying from an anaphylactic reaction in our schools for this law to be approved!

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6 Responses to Access to Epinephrine Testimony

  1. Heather @ Blue Bear Aware February 5, 2014 at 5:16 am #

    Fabulous work, Jenny & boys! Wow, you’ve inspired me to investigate my own state of Texas (always known to be on the slow side!) and give them a push. Thank you for leading the way.

  2. Homa February 5, 2014 at 2:23 pm #

    So happy that you were able to make your voice heard! I am proud that what I wrote was useful and that you were able to get the stats on response times you needed. Those, I think, are really crucial to impressing upon the public that stock epinephrine saves lives. I know that bringing my children to see the legislative process was something that had an impact and they were younger than Caleb and Jacob so your boys will hopefully see something wonderful happen with the contribution that their presence gave. Can’t wait to hear what happens next!

  3. Gratefulfoodie February 5, 2014 at 3:47 pm #

    Jenny, I could not be prouder of you! We are truly blessed to be living in a country that the citizens can participate in the legislative process–even your children.

    Every word, every action in the right direction will save lives. I know you were under the weather and yet, you trudged forward, found the information you needed.

    Your boys understood the importance of this event and stepped up to the plate too! Please tell them how proud I am of their work towards saving the lives of other children!

  4. Selena Bluntzer February 5, 2014 at 6:58 pm #

    It is simply wonderful that you have made these efforts to protect the children of your entire state! Way to go!!!

  5. Debbie in Pittsfield February 6, 2014 at 12:33 am #

    I hear you did an amazing job! Important first steps!

  6. Elizabeth Hamilton-Guarino February 24, 2014 at 12:39 am #

    This is so important and I’m glad you are involved here in Maine. Thank you for all you do for all of us.

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