Stock Epinephrine Laws Save at Least 2 Lives So Far

By Kelley Lindberg

Two school students’ lives were saved this month because of the new law in Nevada allowing schools to keep stock EpiPens on hand. An 8th grader suffered their first allergic reaction during a cooking class, and a school nurse grabbed an EpiPen and administered it while others called 911. Then, two days later, a 9th grader suffered anaphylactic symptoms during lunch, and the school staff administered an EpiPen while 911 was called. (See "EpiPens Saving Lives on School Campuses.")

So far, 27 states have made it legal for schools to keep “stock” epinephrine auto-injectors on hand to use on students who don’t have their own prescriptions. A surprising number of the allergic reactions that happen at school are first-time reactions in students who didn’t previously have an allergy. (You can develop a food allergy at any age, often to foods you’ve eaten without any problems for years.) Since those kids obviously won’t have their own prescriptions, it’s essential for schools to have their own supply on hand.

On November 13, 2013, President Obama signed into law the School Access to Emergency Epinephrine Act, which encourages states to pass laws allowing schools to stock epinephrine and treat students who don’t have a prescription for it. The law enables states that pass such laws to be eligible for grants that will allow them to stock their schools with epinephrine auto-injectors. Fortunately, Utah is one of the 27 states that allow stock epinephrine in schools.

In addition, Mylan Specialty, the company that manufactures EpiPens, has a program called EpiPen4Schools that provides free EpiPens to schools to improve the access to epinephrine for students who have reactions while at school.

The following is the list of the 27 states that allow schools to stock epinephrine auto-injectors as of October of last year (2013). Additional states may be considering similar legislation this year. If your state is on this list, call your local school to make sure they have EpiPens or other auto-injectors on hand. If they don’t, let them know about Mylan’s generous and life-saving EpiPen4Schools program.

• Arizona
• Arkansas
• California
• Colorado
• Florida
• Georgia
• Illinois
• Kansas
• Kentucky
• Louisiana
• Maryland
• Massachusetts
• Minnesota
• Missouri
• Montana
• Nebraska
• Nevada
• North Dakota
• Oklahoma
• Oregon
• South Carolina
• Tennessee
• Utah
• Vermont
• Virginia
• Washington
• West Virginia

It’s a Law! The School Access to Emergency Epinephrine Act Is Official

By Kelley Lindberg

This Thanksgiving, we have another reason to be grateful: on November 13, 2013, President Obama signed into law the School Access to Emergency Epinephrine Act. This law is important because it recommends that states pass their own laws requiring schools to stock epinephrine auto-injectors. Read FARE’s announcement and watch a video of the President signing the bill here: “School Access to Epinephrine.” 

Why is it important to ask schools to stock their own epinephrine? A big reason is because studies show that 20 – 25% of all of the epinephrine injections administered in schools are given to students or adult staff WHO DIDN’T KNOW THEY HAD AN ALLERGY, and who therefore didn’t have their own medication. All too frequently we read about another child who died from a food allergy reaction because they didn’t have immediate access to epinephrine. This law will encourage schools to make sure that scenario never happens to one of their students.

Anyone can develop a food allergy at any time in their lives, often to foods they’ve been eating uneventfully for years. I developed allergies to avocado and brewer’s yeast in my 20s and to barley in my 30s. Then I developed a contact allergy to aluminum and other metals in my 40s. Just because a student hasn’t even shown signs of a food allergy doesn’t mean they won’t develop one. And if it happens at school, the consequences can be tragic.

This new law doesn’t, in and of itself, require schools to stock epinephrine. Instead, it encourages states to pass their own laws requiring stock epinephrine auto-injectors, and it provides incentives for states to do that. It raises the priority level of dealing with food allergies across the nation, pointing a spotlight at this very serious problem and illuminating a very simple way to deal with it – consistent and effective school policies that require epinephrine autoinjectors be added to each school’s medical first aid kits.

Mylan, the pharmaceutical company that makes EpiPen auto-injectors, is supporting this effort with a program called EpiPen4Schools, which allows eligible schools to receive up to 4 EpiPen or EpiPen Jr. auto-injectors at no cost. With this program, any school, no matter how tight their budget, can make sure they have the medication on hand to save lives.

So as you celebrate Thanksgiving this year, remember to offer a word of thanks for the tireless advocates and legislators who worked hard over the last couple of years to make this Act into a Law. And many thanks to President Obama and his peanut-allergic daughter Malia, who recognized the importance of this law and its potential to save lives.

Flying Safely with Food Allergies

By Kelley Lindberg


This week, I’m a guest blogger for Living Without magazine, a magazine about gluten-free and allergy-free living that’s been a great resource for several years. So click on over to their blog to read my new article called “10 Tips for Flying Safely with Food Allergies,” where I share survival tips for airline travel.

While you’re clicking, you might want to read an excellent opinion piece that was published on the New York Time’s website this week, called “EpiPens for All.” Curtis Sittenfeld writes about the need for the national School Access to Emergency Epinephrine Act, which will allow schools to stock ephiphrine autoinjectors that can be used for anyone in an emergency, whether or not they have a prescription. Not sure why that's so important? Sittenfeld explains it well.

See you back here next Monday!

Thanks Sen. Hatch! Now on to Rep. Matheson!

by Kelley Lindberg


Last week, I wrote about UFAN’s efforts to encourage Senator Orrin Hatch to co-sponsor Senate bill 1884, “The School Access to Emergency Epinephrine Act.” This bill would encourage states to ensure that epinephrine is available in schools and that school personnel are trained to administer it in an emergency.

You did it! Enough of us called Senator Hatch that his staff realized how important this legislation is to Utah families. His staff met with FAAN executives last week, then recommended to Sen. Hatch that he support the bill. And guess what? He has now decided to co-sponsor S. 1884! That is great news!

It’s incredible to watch our political system in action, and see that our individual efforts really do make a difference!

So this week, we are trying to get U.S. Representative Jim Matheson to support and co-sponsor the HR version of the bill. In the House of Representatives, the bill is called HR 3627. Almost 80 U.S. Representatives, both Republican and Democrat, have signed on as co-sponsors, so we need to make sure Rep. Matheson signs on to support Utah families.

The person to contact in Rep. Matheson’s office is Joel Bailey. His email address is:
joel.bailey@mail.house.gov

By phone, he can be reached at:
202-225-3011

So pick up the phone again and make another quick phone call. It’s painless, easy, and life-saving. How often do you get to do something like that?

Here is the email I just sent to Joel Bailey:

Hi,

I am a Utah constituent. I understand you can help Rep. Matheson decide on legislation to co-sponsor.

HR 3627 is life-saving legislation that can help prevent more food allergy tragedies at school, such as the one that took first-grader Amarria Johnson’s life last January in Virginia. This bill would encourage states to ensure that epinephrine is available in schools and that school personnel are trained to administer it in an emergency.

Statistically, food allergies now affect approximately one student in every Utah classroom, and more than 15% of school-aged children with food allergies have had an allergic reaction in school. That’s a lot of Utah kids having reactions at school, despite our best precautions.

The scary part is that allergies can develop at any time, and some students may not even know that they are allergic, so they won’t have epinephrine available. 25% of epinephrine administrations in schools involve individuals with a previously unknown allergy. Those injections usually come from bystanders who happen to have EpiPens with them, or from emergency personnel who arrive on the scene – but because anaphylactic reactions can kill within minutes, emergency personnel may arrive too late, like in Amarria Johnon’s case. Having epinephrine immediately available is crucial.

Anaphylaxis (a severe life-threatening allergic reaction) can also be triggered by venom (such as bee or wasp stings), by medications (such as antibiotics), or even by physical activity in some individuals. So it isn’t just food-allergic children who may be helped by this law. Fast access to epinephrine injectors can mean the difference between a close call and tragedy in all of these cases.

The American Academy of Allergy, Asthma and Immunology, and the American Academy of Pediatrics both recommend that epinephrine injectors should be part of the emergency medical kit kept in all schools, and that school staff should be trained in its administration.

Those of us affected by food allergies hope that you will agree that having epinephrine injectors in schools is an important step to saving the lives of our children.  Almost 80 Republican and Democrat Representatives have already signed on to co-sponsor HR 3627. Please encourage Rep. Matheson to strongly support and co-sponsor HR 3627.

Sincerely,
Kelley Lindberg
Mother of a 13-year-old Utah public school student allergic to peanuts and all tree nuts

Make a Call, Save a Life (Support Senate bill “S. 1884”)

by Kelley Lindberg


It’s scary to think your child could have an anaphylactic reaction to food when you’re with him or her. It’s even scarier to consider what might happen if they have an anaphylactic reaction at school. Will anyone be able to find and administer the epinephrine that can save your child’s life?

Last January, Amarria Johnson, a first-grader in Virginia, died from a peanut reaction at school. The school had told her mother she had to keep her EpiPen at home, so none were available at the school to save little Amarria’s life. This tragedy could have been easily prevented.

U.S. Senate bill 1884, the School Access to Emergency Epinephrine Act, is life-saving legislation that can help prevent more food allergy tragedies at school. This bill would encourage states to ensure that epinephrine is available in schools and that school personnel are trained to administer it in an emergency.

This is even more important for kids that may have a food allergy reaction for the first time – since allergies can develop at any time during an individual’s life, you may not know your child is allergic until they’re having a deadly reaction. In those cases, their life may depend on the school having its own epinephrine auto-injector available.

The state of Virginia has already enacted its own law consistent with S. 1884. But we don’t want other states to wait until they lose one of their own students before they recognize the importance of asking schools to stock their own epinephrine. That’s why the Food Allergy and Anaphylaxis Network (FAAN) has been working with several Senators to build support for S. 1884. So far, about 35 Senators, both Republican and Democrat, have signed on as co-sponsors of this important bill. And the following organizations have all joined FAAN in endorsing S. 1884:

• The American Academy of Allergy, Asthma and Immunology 
• The American Academy of Emergency Medicine 
• The American Academy of Pediatrics 
• The American College of Allergy, Asthma and Immunology 
• The National Association of Elementary School Principals
• The National Association of School Nurses 
• The Utah Food Allergy Network (UFAN)

We in the food allergy community can help this bill become a law by letting our Senators know how important we think it is. All it takes is a one-minute phone call.

In Utah, UFAN is targeting Senator Hatch, who is not yet a co-sponsor. But he has two staff members responsible for recommending whether he should co-sponsor the legislation: Hayden Rhudy and Karen LaMontagne. After several of us called Hatch’s office this morning, his assistants have directed us to contact one of these two staff members directly so that they can see how important this legislation is to Utah children.

So take a quick minute and call one of these staff members. It’s easy:

1. Call 202-224-5251 and ask for Hayden first. If she’s not available, ask for Karen.
2. Just say you’re a Utah voter and that you’re calling to ask Senator Hatch to strongly support S. 1884, the School Access to Emergency Epinephrine. That’s all you have to do!
3. If you leave a voicemail, you can send a quick email follow-up, too:

        Hayden_Rhudy@hatch.senate.gov
        Karen_LaMontagne@hatch.senate.gov

When I called Hatch’s office earlier this morning, the assistant who answered said that Hatch isn’t necessarily opposed to it, but that he might prefer that it be a state law instead of a federal law, so he wondered if that’s why Hatch hasn’t signed on as a co-sponsor.  But I reminded him that it’s not really an education issue but a health issue, and that I really hope Hatch doesn’t oppose it when it goes to a vote. I also reminded him that statistically Utah is up to 1 food allergic kid in every classroom. The assistant seemed understanding and supportive, and he suggested I also contact my Utah legislators.

If you can, call as soon as possible so that they receive a significant number of calls. A few UFAN members have already called this morning, and we’ve been told by Hatch’s assistants that the more calls they receive, the better it is for our cause – it lets the Senator see just how important his constituents believe this bill is. We’d love to have at least 50 calls, and 100 would be even better!

So take just a minute out of your busy schedule and make a fast phone call.

Then tonight when your spouse or a friend asks “What did you do today?” you can honestly answer:

“I helped save a child’s life.”

HB 211 – Fighting for Coverage of Elemental Formula for EGID Patients

by Kelley Lindberg


They say the third time is the charm, so let’s keep our fingers crossed that 2012 is the year the Utah Legislature comes through in passing a law for uniform insurance coverage of amino-acid based elemental formulas for eosinophilic gastrointestinal disorders (EGIDs).

Eosinophilic Gastrointestinal Disorders (EGID) are a group of diseases that are characterized by having a large amount of a particular type of white blood cell, called eosinophils, in various places in the digestive system. These blood cells basically make it impossible to digest the proteins in food.

Food proteins exists in all natural foods, including vegetables, fruits, dairy, fish, and meats. Symptoms vary widely, and include just about every gastrointestinal agony you can think of, including nausea, diarrhea, severe pain, malnutrition, and reflux that doesn’t respond to any therapy. Because sufferers can’t eat many – or in some case, any – foods, symptoms can lead to severe malnutrition, failure to thrive, and starvation. The only way to confirm a diagnosis is with an endoscopy and biopsies.

While some medications can relieve some of the symptoms, the only treatment is an elimination diet. It’s not uncommon for EGID patients to be forced to eliminate so many foods that they can literally count their “safe” foods on only one or two hands. In many cases, these patients must resort to what’s called an elemental diet – that means, literally, no food. The only form of nutrition these patients can tolerate is a special “elemental formula” that contains amino acids, fats, sugars, vitamins, and minerals. Sometimes it can be drunk. Other times it must be administered through a feeding tube.

Can you imagine being a child or an adult, and being hooked up to a feeding tube and its machine every day for your only source of nutrition? And yet, you still have to go about all the same daily routines as everyone else – going to school or work, getting together with friends, raising your children, or doing the grocery shopping for the rest of the family who CAN eat?

As if eliminating all food weren’t difficult enough for these people (which include both children and adults), this elemental formula can cost as much or more than a mortgage payment EVERY MONTH.

Adding insult to injury, insurance companies don’t cover elemental formulas, even when they are prescribed by a doctor and are the only defense standing between the EGID-affected patient and starvation.

That’s why this legislation, HB 211 - Insurance Coverage for Amino Acid-based Formula, is so important.

Thirteen states have already passed laws for coverage, and six other states (in addition to Utah) are trying to pass uniform coverage laws this year. The food allergy and EGID community would greatly appreciate your support of this bi-partisan initiative.

If you’d like to help make a difference in the lives of families suffering from the financial hardships of living with EGIDs, here is a quick and simple thing to do – write some emails! Here are some tips for doing that:

First, email the members of the House Rules Committee and ask them to vote in favor of moving HB 211 out of the House Rules Committee and on to the Health and Human Services Committee. If you have personal experience with this awful disease, explain how the lack of coverage for this disorder has impacted your family, emotionally and financially (or for physicians, your treatment of patients). Don't make your email too long, but emphasize how the current status harms families.

In the Subject line of your email, put: HB 211 - Please Prioritize on Agenda

The following representatives are the most important people to contact. If either of these men are your representative, change your email subject to: HB 211 - I am your Constituent - Please Prioritize

• Rep. Wayne A. Harper, Chair, wharper@utah.gov
• Rep. Ryan D. Wilcox, Vice Chair, ryanwilcox@utah.gov

Next, send the same email to the following committee members, but change the email subject to: HB 211 - Please Support & Move to Committee

Again, if any of these are your representatives, change the email subject to HB 211 - I am your Constituent - Please Support

• Rep. Jim Bird, jbird@utah.gov
• Rep. Jack Draxler, jdraxler@utah.gov
• Rep. Neal Hendrickson, nhendrickson@utah.gov
• Rep. John Mathis, jmathis@utah.gov
• Rep. Mike Morley, mikemorley@utah.gov
• Rep. Larry B. Wiley, lwiley@utah.gov
• Rep. Bill Wright, billwright@utah.gov

If you are unsure who your representatives are, click here to easily find out http://www.le.utah.gov/GIS/findDistrict.jsp. Emails from constituents are much more powerful.

Finally, make sure you sign every email with your full name and mailing address. You can also include your phone number if desired. They do check to make sure we are real people in Utah and/or their constituents!

If you would like more information, or if you would like to add your name to the list of supporters so that you can be emailed about this legislation’s status in the future, please send an email to either Tammy Zundel (from the Utah Eosinophilic Disorders Association, eos.utah@gmail.com) or Michelle Fogg (from the Utah Food Allergy Network, mfogg@utahfoodallergy.org).

THANK YOU for your help as we fight to gain coverage for this vital and life-saving medical formula used to treat those with EGIDs and multiple food allergies in Utah.

P.S. The Utah legislature is transitioning email address suffixes by the end of the 2012 session, but some have reported returned undelivered emails to particular representatives. If this happens, please re-send using the suffix @le.utah.gov

Why Are Voluntary Guidelines Useful?

by Kelley Lindberg


On January 4, 2011, President Obama signed into law the Food Allergy and Anaphylaxis Act (FAAMA), which directs the federal government to create national, voluntary food allergy management guidelines for schools. It also provides for school-based food allergy management incentive grants to help public schools implement those management guideliens.

This is great news. Right now, every school, every school district, and every state is on their own when it comes to forging food allergy guidelines for teachers and administrators to use in those schools. That means a whole lot of wheels being reinvented from scratch every year – and, more likely, a whole lot of wheels that will never even get built because schools are just too busy and financially strapped to take the time to start something that sounds that complicated.

By tapping a coalition of groups including the Food Allergy and Anaphylaxis Network (FAAN), the National Association of School Nurses (NASN), and the National School Boards Association (NSBA) to create these national guidelines, this new law will make it so much easier for all of those thousands of different school districts to use or adapt the guidelines, instead of starting from scratch. The easier something is to create, the more likely it will be to 1) be created, and 2) be supported and followed.

But many people in the food allergy community are upset to hear that the guidelines will be voluntary instead of mandatory.

For now, voluntary is a huge step forward, and will likely garner much more support than mandatory would have.

Chris Weiss addressed this issue in his FAAN blog. Read his take on the situation in his posting, “Reflecting on FAAMA.”

In addition, Michelle Fogg, the president and founder of the Utah Food Allergy Network (UFAN), wrote a response to a concerned parent, explaining why voluntary guidelines are a vital, useful, and necessary step, even though they aren’t mandatory. Here is what Michelle says:

Mandates are nearly impossible to pass in government and receive huge opposition no matter what the subject is. I can't speak directly for FAAN as to their motives for 'voluntary' BUT I do know that no 'one size fits all' approach would be applicable for every state and every school. The States don't want big government coming in and telling them what and how to do things. In my opinion, having a national set of guidelines for states to use when creating their own would give more uniformity generally and would save many states from having to create guidelines out of thin air. At least now there will be credible uniform information available to any state or school district wanting better management of food allergic children. It is up to us as citizens to make sure the powers that be know we want statewide guidelines in place...again these will be voluntary as no one approach is innately best for all. I have already spoken with the UT State School Board and Office of Education and the moment I said "voluntary guidelines" NOT a mandate, they began to listen and show interest. I understand your frustration because as a mother we think this should be a no brainer - a must have!! I think it will be standard in the future but unfortunately there is political red tape and it is going to take us as parents and a community speaking up and demanding it from our individual schools, districts, and representatives. Watch for info to come soon on how you can help support UFANs efforts to get statewide guidelines created and the information disseminated.

...I am currently engaged in the battle to get the State to mandate insurance coverage for medical formulas for EGIDs and it is crazy trying to get a mandate to go through (this is our second attempt)! The FAAMA took almost eight years to pass and had to be rolled into the larger Food and Safety Bill to even make it through. I'm happy because I think it's a victory to have any guidance out there and hopefully many will take advantage of it. If they don't then we'll have to demand it, right?!

Thanks for sharing your feelings with me,

Michelle Fogg
President & Founder
Utah Food Allergy Network
http://www.utahfoodallergy.org/