Resources for Anaphylaxis Awareness Day

Today is Anaphylaxis Awareness Day on our Food Allergy Action Calendar! We encourage everyone to learn about anaphylaxis and how to use an epinephrine auto-injector, or train someone else if you are already knowledgeable.

To help you educate yourself and others, we’ve provided a list of anaphylaxis resources below. From posters to emergency care plans, these materials and information can help you learn and spread the word about how to recognize and treat this life-threatening reaction:

Information about anapyhlaxis:

About Anaphylaxis: Symptoms, Treatment, and Coping
Treating & Managing Reactions
Webinar recording: “All About Anaphylaxis: Understanding the Risks, Symptoms & Treatment” with Dr. Robert A. Wood
Your Questions Answered: Anaphylaxis

Epinephrine resources:

Epinephrine Auto-injectors
2014 Patient Assistance Resources for Epinephrine Auto-injectors

FAAEPthumbMaterials:

Food Allergy & Anaphylaxis Emergency Care Plan (English and Spanish versions available)
Common Symptoms of Anaphylaxis Poster
Common Symptoms of Anaphylaxis Poster (premium version for purchase)
Common Symptoms of Anaphylaxis Magnet

Fast Facts About Anaphylaxis:

  • Food allergy is the most common cause of anaphylaxis, although several other allergens – insect stings, medications, or latex – are other potential triggers.
  • Anaphylaxis often begins within minutes after a person eats a problem food. Less commonly, symptoms may begin hours later.
  • Teenagers and young adults with food allergies are at the highest risk of fatal food-induced anaphylaxis.
  • It is possible to have anaphylaxis without any skin symptoms (no rash, hives).
  • People who have both asthma and a food allergy are at greater risk for anaphylaxis.
  • Epinephrine (adrenaline) is a medication that can reverse the severe symptoms of anaphylaxis. It is given as a “shot” and is available as a self-injector, also known as an epinephrine auto-injector, that can be carried and used if needed.
  • Epinephrine expires after a certain period (usually around one year), so be sure to check the expiration date and renew your prescription in time.
  • About 1 in every 4 patients have a second wave of symptoms one to several hours after their initial symptoms have subsided. This is called biphasic anaphylaxis.

What’s so funny about anaphylaxis?

By Veronica LaFemina, Vice President of Communications at Food Allergy Research & Education (FARE)

Growing up in a food allergy family, I lived in a world where people barely knew what a food allergy was, let alone that it could be life-threatening. It wasn’t always easy to explain to my friends that they couldn’t bring candy or snacks with peanuts or tree nuts over to my house, but this rule was always met with curiosity and compliance – not eye-rolling or jokes.

Today, as someone whose work is dedicated to increasing awareness of food allergy as a serious, potentially life-threatening and growing public health issue, I know there is still much work to be done, but I am heartened by the significant progress that’s been made in ensuring people with food allergies are safe and included. From advances in research and improved laws and regulations at the federal and state levels to national education initiatives, grassroots advocacy movements and nationwide news coverage – all of these efforts have contributed to greater awareness, empathy and action in support of the food allergy community.

One area that’s lagging behind, though, is the portrayal of food allergies in movies and television. These mediums are so powerful in tackling tough issues, shaping our cultural conversations, and shedding light on societal trends in ways that make us think, discuss, question and laugh.

But when it comes to food allergies, many movies and television shows are still living in the Dark Ages. In the last week alone, at least three primetime television shows included scenes that made light of food allergies.

All too often, food allergies are played for a cheap laugh – they’re the topic of a prank or the target of a joke. Reactions are portrayed unrealistically and in such a way that could cost characters their lives, and characters who don’t have food allergies are disproportionately depicted as people who are strangely excited at the possibility of sending someone to the hospital. These portrayals are not only untrue and hurtful – they are dangerous.

Some will say that the mere presence of food allergies and anaphylaxis in popular culture is a sign that the disease is gaining ground in the national consciousness. It is, and that is important. It’s also true that there are many different ways to broach a topic and bring attention to it, including using humor appropriately to educate and raise awareness.

But as a society, we can do better. And as a community, we can help by pointing people in the right direction.

In that spirit, for the producers and writers of movies and television shows who are interested in including food allergies in their story lines, I’d encourage you to keep the following in mind:

  1. Food allergies can be life-threatening. The most insidious fact about food allergy is that there is no way to know how severe a reaction will be until it happens – which means that every reaction has the potential to lead to a hospital visit, or worse. Today, without a cure or preventive treatments that can reduce the risk of life-threatening reactions, avoiding the food completely is critical (and much harder than it sounds). A person with a diagnosed food allergy should also be prepared for a severe reaction (anaphylaxis). That means having two epinephrine auto-injectors with them at all times, and knowing how and when to use them (for young children, it’s important for a responsible adult to carry and know how to use the auto-injector). When a severe reaction does occur, the person must be treated immediately with an epinephrine auto-injector and then 911 should be called to transport them to the hospital for further treatment and observation for at least four hours to ensure the symptoms don’t return.A recent episode of a network television sitcom depicted a character self-injecting epinephrine and then remaining at her desk while co-workers laughed about the incident – in the real world, this scene could have ended in tragedy. To treat it so lightly is irresponsible and could be dangerous. If you’re going to show a reaction, then show what it’s really like – not an unrealistic version that downplays the severity and potential consequences.
  1. 15 million people in the U.S. have food allergies. That’s enough people to be our fifth largest state. Since this is a common disease, it makes sense to incorporate characters with food allergies into your work. But it doesn’t make sense to play into a stale stereotype. Food allergy is an invisible disease that doesn’t discriminate based on race, geography, economic status or any other factor. It affects a diverse array of adults and children throughout the country, disproportionately affects African Americans, and is a reality for professional athletes, scientists, actors, musicians, and even those who live at the White House. When you determine which character will have a food allergy, it’s important to keep these facts in mind.
  1. Food allergy bullying is real and can have dire consequences. Movies and television have taken on the broad topic of bullying and explored the issue in meaningful and poignant ways. So what makes food allergy bullying different? A third of kids with food allergies have been bullied specifically because of them, and half of those kids didn’t tell their parents about it. Watching popular shows model ways in which to bully kids with food allergies is terrifying – for adults and children alike – and for what? A lame filler laugh? If exploring food allergy bullying is important to the story you are trying to tell, avoid showing exactly what happened and be sure to show the consequences the bully faced. Don’t make bullying look cool or even acceptable. You can learn more about this subject via FARE’s “It’s Not a Joke” campaign to address food allergy bullying.
  1. Approach this topic in the same way you would other life-threatening medical conditions. Humor can be excellent for softening difficult scenarios and supporting the healing process. And food allergy certainly isn’t the only disease that movies and television shows poke fun at. But when you’re writing a scene about food allergies, I’d ask you to consider this – would you make the same joke about cancer, or diabetes, or a heart attack? More often than not, the answer will be no. This isn’t about special treatment – it’s about being evaluated by the same standard.

Next Monday, March 31, the food allergy community will remember those individuals who have lost their lives to anaphylaxis, and this spring, we as a community will be promoting events like World Allergy Week and Food Allergy Awareness Week to help increase understanding of and support for our cause. Despite these tragedies and the need for greater understanding, food allergies still face skepticism in a way that other diseases rarely seem to.

We are at a critical time in the national discourse around food allergies. Movies and television shows are in a unique position to shape the cultural conversation about the disease. My hope is that they will continue to include stories about food allergy – because food allergy does touch all of us, and it needs to be better understood – and that they do so in a more realistic and empathetic way.

Veronica LaFemina is Vice President of Communications at Food Allergy Research & Education (FARE). Her father and younger sister have food allergies. You can learn more about food allergies on FARE’s website – www.foodallergy.org.   

2014 Patient Assistance Resources for Epinephrine Auto-Injectors

If you have been prescribed epinephrine, FARE recommends that you carry two epinephrine auto-injectors with you at all times to make sure you have quick access to this life-saving medication. It’s also important to replace any expired auto-injectors right away so that you always have an up-to-date device.

We know those prescription costs can add up, so we encourage individuals and families who are managing food allergies to take advantage of the following options to help make this medication more affordable.

copaycard-cc1. Mylan Specialty’s “$0 Co-Pay Offer” for EpiPen® Auto-Injector

Available to both cash-paying and commercially insured patients, the “$0 Co-Pay Offer” is valid for up to three EpiPen 2-Pak® cartons or EpiPen Jr 2-Pak® cartons per prescription, as patients may need to access two EpiPen or EpiPen Jr® (epinephrine) Auto-Injectors in multiple locations. Eligible patients can use the offer with an unlimited number of prescriptions until the coupon offer expires on December 31, 2014.

Learn More

auviq2. Sanofi’s “$0 Co-Pay Offer” for Auvi-Q® Auto-Injector

With the savings offer, most insured patients will pay $0 out of pocket for their Auvi-Q prescription. Cash-pay patients can receive up to $100 off per two-pack of Auvi-Q, up to a maximum of three two-packs per prescription. Fill out the form to join the “Support & Savings Program” to access the offer. This offer can be used an unlimited number of times until the coupon offer expires on December 31, 2014.

Learn More

genericcoupon3. Lineage Therapeutic’s “$0 Co-Pay Offer” for Generic Epinephrine Auto-Injector

The approved generic for Adrenaclick® is available as of June, 2013 and may provide a lower-cost option to patients. Commercially insured patients will receive their epinephrine auto-injector at $0 cost. Cash paying patients will receive up to $300 off their out-of-pocket cost (This offer is valid for a maximum savings of $100 per pack (limit of 3 packs)).

Learn More

Be advised that the devices operate in different ways, so it is important to discuss your options with your doctor and be properly trained to use the device. You can find tips for getting the auto-injector you want and links to important information about each product, and training videos on how to use them on our the epinephrine auto-injector page of our website. Please note that these offers are not valid for prescriptions covered by or submitted for reimbursement under Medicaid, Medicare, or similar federal or state programs.

Food Allergy Research Update

FARE’s Fall edition of Food Allergy News contained a research update on four new food allergy studies, two of which received funding from FARE. Excerpts about the findings of each study are below; click the links to read the full text in our e-newsletter.

Awareness May Be Stabilizing Emergency Department Visits

In 2011, researchers reported that food allergies were responsible for a significantly higher number of emergency department (ED) visits than previously thought. That FARE-funded study, published in the Journal of Allergy and Clinical Immunology, found that food allergies caused 224,000 visits to the ED each year. The prevalence of food allergy continues to rise and one might expect that this growing number of people with food allergy would increase the number of ED visits caused by food allergy. However, a new study conducted by the same research team, also with funding from FARE, suggests that ED visits are not keeping pace with population increases in food allergy. The data suggest that greater awareness and education are having a favorable effect on the number of ED visits caused by food allergy.

Read more on page 4>

Impact of Food Allergy on Inner-City Children with Asthma

Food allergies and asthma often go hand-in-hand, but researchers do not fully understand the relationship between the two diseases. A research team led by Dr. James L. Friedlander (Boston Children’s Hospital/Harvard Medical School) surveyed 300 elementary school students with asthma who participated in the School Inner City Asthma Study (SICAS) from 2008 to 2011 to learn more about the connections between food allergy and asthma. Read more about the findings of the study, published online by the Journal of Allergy and Clinical Immunology: In Practice in September 2013.

Read more on page 4 >

Understanding Anaphylaxis

A new study out of Australia examines a large number of cases of anaphylaxis. This analysis also provides information about the many different inflammatory mediators—proteins and other substances released by the cells of the immune system—that play a role in potentially life-threatening reactions.

Read more on page 5 >

Vitamin D and Food Allergy

Babies who are deficient in vitamin D are more likely to have a food allergy, according to a study of over 5,000 one-year-old infants conducted by Australian researchers. The study, published in the April 2013 issue of the Journal of Allergy and Clinical Immunology (JACI), provided the first direct evidence that an adequate vitamin D level may protect babies against food allergies.

Read more on page 5 >

The full research update was published in the Fall 2013 issue of FARE’s Food Allergy News. Read more of the newsletter here.

Your Questions Answered: Anaphylaxis

In our October webinar, Dr. Robert A. Wood, a professor of pediatrics and chief of Pediatric Allergy and Immunology at Johns Hopkins, and professor of International Health at the Johns Hopkins Bloomberg School of Public Health, focused on anaphylaxis, a severe allergic reaction that is potentially fatal.

Dr. Wood, who is also a member of FARE’s Medical Advisory Board, discussed the risks, symptoms and treatment of anaphylaxis; dispelled myths; and answered questions from the audience. Dr. Wood’s full presentation can be viewed on our website, but here are his responses to some of the questions submitted by audience members.

  1. How can you distinguish between symptoms of anaphylaxis and other illnesses? (e.g., asthma attack, random hives, stomach cramps, or anxiety attack)
    The symptoms can be identical. What we want to do is interpret the symptoms in the context of the overall situation and the chance that there’s been a food exposure. So if your child gets random hives or stomach aches and they’ve been home for the last several hours, and you know what they’ve eaten, and you’re confident they’ve not had an exposure; you can be quite confident these are random hives or stomach cramps. On the other hand, if you’re out at a family party for the holidays, and the food has not been under your complete control, and they show up with these same symptoms, we would be more worried that this may indicate a food exposure and the beginning of an anaphylactic reaction.
  2. Are there any clear differences in the way anaphylaxis progresses in children versus adults?
    The overall answer is no. The thing that does change is that as people get into middle age they’re actually more prone to the cardiovascular or blood pressure effects of an allergic reaction. One reason we don’t see blood pressure being the cause of death in children is that the heart and blood pressure systems in kids and young adults is very strong and typically can keep going in spite of a reaction. But as we hit middle age and older, our blood pressure system may not be as sturdy, and adults in that age group will be more prone to have the low blood pressure or anaphylactic shock.
  3. Is there any way to find out how much allergen it would take to cause an anaphylactic reaction in our child?
    We generally don’t have a clear answer to this. With the patient who comes in and has had 10 or 15 or 20 reactions, we can carefully look at each of their exposures and be able to say, “Okay, with this reaction, with this much exposure and that’s how they reacted.”  Otherwise I cannot look at a test result, I cannot look at a prior reaction or two and make any real prediction about what the reaction will look like or how much allergen it will take to cause that reaction. Some people want to undergo formal food challenges to get this answer. In a food challenge, we’re obviously intentionally feeding someone what they might be allergic to, and many times inducing an allergic reaction. But it is not designed to answer the question posed here, which is how much allergen it would take to cause an anaphylactic reaction. It doesn’t answer that because when we do a food challenge, we stop the challenge at the first sign of the reaction. We don’t push it to say, “How much more would it take to lead to anaphylaxis?” That would not be an ethical way to practice. So even a food challenge does not typically answer that question.
  4. If a person is having an anaphylactic reaction and doesn’t respond to epinephrine, is there anything that a hospital can do at that point?
    Absolutely yes. Now, there are cases where the reaction has gone too far by the time the patient gets to the hospital that there is nothing more to do. But, if for example someone was still having breathing problems after getting epinephrine, it is possible in those cases to put a breathing tube in place or to put a tracheotomy in place to make sure that air is still being provided into the lungs to maintain breathing. If someone is having low blood pressure because of their reaction that epinephrine didn’t stabilize, IV fluids and the use of these other medications can be extremely helpful. So, thankfully in most instances, if we’ve done the appropriate home management of an anaphylactic reaction, the response you get from the emergency room is, “What are you doing here? Your child looks fine.” The truth is that they look fine because you treated them appropriately. In most instances, a single dose of epinephrine along with a dose of antihistamine will completely reverse the reaction. So they do look fine but it doesn’t mean they shouldn’t be there. You want them there for the 20% of the time that additional medications are needed.
  5. Are people with asthma more at risk of fatal anaphylaxis, and why?
    Yes. Because the main reason that people die of anaphylaxis is that their airways shut down. Because of the underlying asthma, your airways are likely to be more sensitive to an allergic reaction.
  6. Does the risk of an anaphylactic response increase with each exposure to an allergen?
    Absolutely not. The next reaction is completely unpredictable. The biggest variable in that next reaction will be the dose of exposure. Since we have no idea what that dose will be, we can’t predict the reaction severity. Think back to the examples I was giving: If this reaction occurred to a contaminated cookie that had 1/100th of a peanut, and the next reaction occurred to eating a full cookie that had well-disguised peanut that had the equivalent of five peanuts in it, that reaction just had a 500-fold higher dose and will be much more severe than the one before. Again, you can’t take any reassurance that the last reaction wasn’t severe. If someone has had a huge exposure with only a mild response, that is a little bit reassuring. But because these allergies can change over time, even that wouldn’t make us say, “Throw away your epinephrine.”
  7. For people with peanut or tree nut allergies, how dangerous are ball games, airplanes, and other places with lots of nuts?
    As a general rule, because ingestion is the main root of exposure that poses risk, being around nuts is not going to be dangerous. Now, airborne reactions can occur. They will typically only happen though if the nuts are being disturbed in a way that will create a dust and if you are in a very confined space. So if you think about how that might happen, you will definitely get more peanut allergen in the air if you’re cracking open nuts, especially if you’re throwing nuts on the floor and walking on the shells. Each of those activities may create some dust that does contain allergen. If you’re in a contained space – if you’re in the waiting area of a restaurant and everyone is cracking open nuts, and the floor of that waiting area has an inch-thick peanut shell on it – that is a place that you could have a dangerous airborne reaction. That same amount of peanut at a ball game, though, virtually never causes problems. In the outdoor air, it’s very rare to see true airborne reactions. Now on airplanes, if everyone was cracking open nuts, airplanes would be a scary place. But the truth is that just by opening bags of peanuts, there’s very little peanut allergen getting into the air. We can’t say that it’s a zero risk situation. I can’t say that ball games are zero risk; I can say they’re very low risk. For me and my peanut allergy, I don’t worry about ball games or flying at all. I have no concern about it whatsoever. If my patients want to avoid ballgames or be on peanut-free flights, I don’t say that’s wrong. Although I think that normalizing life as much as possible and finding a cooperative airline that won’t serve peanuts, at least for peace of mind, may be a reasonable approach to be less anxious and still enjoy a family trip or vacation.
  8. You have had several anaphylactic reactions. In your own words, can you please describe what you or someone experiencing this type of reaction may be feeling?
    I can tell you that I’ve been very fortunate going nearly 20 years since my last anaphylactic reaction. But the memory of my last reactions is still very vivid, so this is something that sticks with you. I can tell you that my reactions, of which I’ve had 5 or 6 in my lifetime in the very severe category requiring epinephrine, one requiring multiple shots of epinephrine, all looked different. None of them looked the same. One had a very abrupt onset, one took 20 or 30 minutes, one had a lot of GI symptoms. All of them thankfully gave me an immediate reaction in my mouth, so I had a warning sign that I was eating a problem food. I was eating a food that was supposed to be completely safe, was promised to be safe, but while I was eating it I recognized that my mouth was itchy and I knew something was wrong. Then I could intervene, obviously to stop eating but also to begin treatment. Since I have this history of severe reactions, I will immediately administer epinephrine; there would be no reason for me to wait at all.

Questions about Treatment:

  1. Should RAST [blood test] or skin test scores be used to change an emergency care plan? If not, what are they useful for from a severity standpoint?
    The answer to the first question is absolutely not. They have no bearing on an emergency care plan. For the second question – they have very little use from a severity standpoint. So these are valuable tests to make a diagnosis. They are problematic even in making a diagnosis, but they are truly not useful in designing your child’s emergency care plan. You can have people with low scores and severe reactions, people with high scores and less severe reactions. If you take a large group, if you took 100 people with peanut allergy, you would see somewhat more severe reactions in those at the very high end of the scale. But you would see dramatic exceptions at either end. Meaning you would see some people at the very high end of the scale who have very minor reactions and some people at the very low end of the scale with very severe reactions. So we have never, and until we get better tests never will, devise our action plan around a test score.
  2. Can a person’s allergy severity worsen to the point that their anaphylaxis plans should change?The answer is absolutely, positively yes. One of the most important things that we do, is every time a reaction happens, we review that reaction. We review it from several standpoints. One of them is we want to think about how it happened – is it a situation that could be avoided the next time? There are always lessons to be learned from a prior reaction that may help the next one. We want to think about what was done during the reaction – was it done consistent with or not consistent with the action plan that we’d established? And was the reaction different than we expected? We may get very good news. We may get news that this child has virtually outgrown their milk allergy because they just got a whole big slug of milk and they barely reacted. That would downgrade their action plan. But more so we want to be in the knowledge of worse reactions to be able to upgrade the emergency care plan to have a more aggressive treatment plan if someone has presented with a more severe reaction than what we anticipated.
  3. Can antihistamines help after epinephrine is given?
    Antihistamines have no life-saving capacity, but they can help. They can help some more mild symptoms. We’ve seen people get epinephrine up front in a reaction, look very good, and then get hives later. I think that giving the antihistamine up front may prevent some of those later hives from happening.
  4. Is it ever worth giving oral antihistamines if that might mean losing time to administer epinephrine during what might rapidly progress to an anaphylactic reaction?
    Clearly, if we knew that reaction was progressing rapidly to anaphylaxis, we wouldn’t wait around and give an antihistamine. But if we’re in one of these situations where we interpret that this might not be such a severe reaction, giving antihistamine at that moment might be very appropriate, while having the epinephrine immediately on hand to administer if the reaction progresses.

We host an educational webinar every month. A recording of our November, “Safely Navigating the Restaurant Scene,”  is available on our website here: http://www.foodallergy.org/tools-and-resources/webinars

New Action Plan for Food Allergy and Anaphylaxis Now Available

FAAEPthumb FARE has released the new Food Allergy & Anaphylaxis Emergency Care Plan, formerly the Food Allergy Action Plan. This written document outlines recommended treatment in case of an allergic reaction, signed by a child’s physician and includes emergency contact information. It should be on file for every student with food allergies.

The updated plan was revised by FARE’s new Education Working Group, a multidisciplinary group of food allergy experts that includes support group leaders, two members of FARE’s Medical Advisory Board, experienced parents of children with food allergies, an adult with food allergies, a dietitian, psychologist and a school nurse. The plan was approved by FARE’s Medical Advisory Board.

The document presents critical information including allergen(s), symptoms and treatment instructions in an easy-to-follow format—critical in an anaphylactic emergency.

Download the write-able PDF to see what the new plan looks like, and please let your physician, school nurse, or other parents know it is now available!

2013 Patient Assistance Resources for Epinephrine Auto-Injectors

If you have been prescribed epinephrine, FARE recommends that you carry two epinephrine auto-injectors with you at all times to make sure you have quick access to this life-saving medication. It’s also important to replace any expired auto-injectors right away so that you always have an up-to-date device.

We know those prescription costs can add up, so we encourage individuals and families who are managing food allergies to take advantage of the following options to help make this medication more affordable.

cardfront-screen1. Mylan Specialty’s “$0 Co-Pay Offer” for EpiPen® Auto-Injector

Available to both cash-paying and commercially insured patients, the “$0 Co-Pay Offer” is valid for up to three EpiPen 2-Pak® cartons or EpiPen Jr 2-Pak® cartons per prescription, as patients may need to access two EpiPen or EpiPen Jr® (epinephrine) Auto-Injectors in multiple locations. Eligible patients can use the offer with an unlimited number of prescriptions until the coupon offer expires on December 31, 2013.

Learn More

support_callout_copay2. Sanofi’s “$0 Co-Pay Offer” for Auvi-Q® Auto-Injector

With the savings offer, most insured patients will pay $0 out of pocket for their Auvi-Q prescription. Cash-pay patients can receive up to $100 off per two-pack of Auvi-Q, up to a maximum of three two-packs per prescription. This offer can be used an unlimited number of times until the coupon offer expires on December 31, 2013.

Learn More

body-what-is-epi-options-15mg3. Generic Epinephrine Auto-Injector

The approved generic for Adrenaclick® is available as of June, 2013 and may provide a lower-cost option to patients.

Learn More

Be advised that the devices operate in different ways, so it is important to discuss your options with your doctor and be properly trained to use the device. You can find tips for getting the auto-injector you want and links to important information about each product, and training videos on how to use them on our the epinephrine auto-injector page of our website.