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

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

Fighting for Coverage of Elemental Formula for EGID Patients

by Kelley Lindberg


This morning, the Utah Legislature is voting on Utah House Bill 233 – “Insurance Coverage for Amino Acid-based Formula.”

While we’re not sure if this bill will pass or not, we’re encouraged by the response our pleas have received – it looks like, through the tireless efforts of Tammy Zundel, President and Founder of the Utah Eosinophilic Disorders Support Group, and Michelle Fogg, president and founder of the Utah Food Allergy Network, insurance companies may be willing to sit down and discuss the possibility of covering the amino acid-based formulas for EGID patients.

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 aren’t just in meat. Some type of food proteins exists in all natural foods, from milk to vegetables to fruits to, yes, 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 there are some medications that 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 with they are prescribed by a doctor and are the only defense standing between the EGID-affected patient and starvation.

That’s why this legislation is so important. If it doesn’t pass this year, several representatives have already agreed to help us try again next year (Rep. Menlove would be the sponsor and Rep. Moss and Rep. King would be co-sponsors). In the meantime, however, Tammy and Michelle report that because so many Utahns affected by EGID have written letters to their representatives this year, the insurance lobby has agreed to set up one-on-one meetings with insurance companies here in Utah to seek coverage for amino-acid based elemental formulas without a legislative mandate. And that’s a great thing. Everyone involved just wants to see this formula covered so that the people affected by this devastating disease can receive the help they desperately need, whether it’s accomplished via legislation or through negotiations directly with the insurance companies.

Thanks to people like Tammy and Michelle, EGID sufferers have a little more hope this morning.

For more information about EGID, visit the website for the American Partnership for Eosinophilic Disordres (APFED) at http://www.apfed.org/.

Democratic Process in Action

The Utah Legislative session for 2009 is over, and HB 124, which affected the lives of many Utah families who struggle to pay for the formula that keeps their severely allergic kids thriving, didn’t make it to the Senate floor.

That means it failed.

So those families are still faced with paying hundreds of dollars a month for the only formula that their babies can ingest, because insurance companies view it as “unnecessary.”

Frustrating as it was, following the progress of this bill was interesting. I participated in the democratic process for this bill by emailing my local representatives early on, then emailing all of them last week, asking for their support. When it passed the House and was sent to the Senate this week, I emailed Minority Leader Rep. David Litvack asking him to prioritize the bill so that it would get read in the Senate. It was assigned #20 on the list, so it never got read before time ran out.

Despite the fact that the bill failed, this is what I learned: it’s surprisingly easy to participate in this process of government. I sent three little emails. It took maybe a minute of my life each time. Three minutes total. And it came close to making a difference.

What was even more surprising was that I actually got responses from several of the representatives – all but one of the ones who responded said they supported the bill. The one who didn’t outright support it was honest enough to tell me he wanted to learn more about the bill and about why the finance note was removed before he would vote for it. I appreciated that.

These representatives must get tons of emails. They’re faced with a zillion bills to review, make a decision on, and vote on. Most of those bills are either incomprehensible or imbecilic, and this year everything was complicated by the distracting background noise of Utah’s economy being sucked down the drain. And this bill, I admit, probably wouldn’t be high on anyone’s list if they weren’t affected by the diseases that it covers. Yet several of the representatives actually took a minute of their time to write back to me to tell me their stand on it.

It was an interesting experience, even if it didn’t turn out the way we’d hoped. Last year (and the year before that), our allergic families were successful in getting legislation passed that makes it legal for our kids to carry their epinephrine shots in school, and lets responsible adults like teachers, counselors, and coaches get prescriptions to carry and administer epinephrine to kids in their charge. That legislation made it through the legal process successfully. So we know it can happen, and we know there are people in the legislature who care about our medical issues.

So next year, I hope the people who supported us this time will support us again, and we’ll see if this bill gets passed. And I’ll be ready with my mouse poised over the Send button on my email. A little communication with the real people casting the votes really can make a difference. Who knew?

Help Pass H.B. 124

The Utah Legislature is in session. Now before you go and hide, there’s a good thing happening right now in the legislature. Representative Christine A. Johnson has sponsored a bill (H.B. 124) asking for “Insurance Coverage for Eosinophilic Gastrointestinal Disorders and Short Bowel Syndrome.” (Click here to read the text of the bill.)

What are Eosinophilic Gastrointestinal Disorders? Basically, it’s a disorder that “is characterized by having above normal amounts of eosinophils in one or more specific places anywhere in the digestive system.” In terms the rest of us can understand, these people (and we’re often talking about babies and kids here) have intestines that can’t tolerate or absorb regular foods or even baby formulas composed of whole proteins, fats, or carbohydrates.

People with these disorders are allergic to just about everything. Babies with it can’t eat anything but a specific type of formula made from non-allergenic amino acids that are already broken down so that the baby can more easily digest it. Unfortunately, this formula costs hundreds of dollars a month for a single child, and most insurance companies don’t cover it. Hundreds of dollars a month. Hundreds. Did I mention hundreds?

Rep. Johnson’s bill will direct insurance companies to recognize these diseases as the deadly diseases they are, and will get the insurance company to cover this formula as the medically necessary product it is if the child’s doctor prescribes it.

Without this formula, these babies simply do not thrive. They drop well below range on weight and height charts. They grow very ill. They can’t eat anything, not even mother’s breast milk. Yet most insurance companies ignore it.

So we’re very thankful to Rep. Johnson for sponsoring and filing this bill with the Legislature. If you’ve got a minute or two, call or write to your own state representative and let him or her know how serious this disease is, and how essential covering this formula is for the families affected by it.

If insurance companies will cover Viagra to make babies, the least they can do is cover the medically essential formula that is all that will keep some of those babies alive and thriving.

You go, Rep. Johnson!