Carrying Epinephrine: Stunning Stats and Easy Solutions October 16, 2018

We all know that the best treatment for anaphylaxis, a severe life-threatening allergic reaction, is an immediate dose of epinephrine.  So, why then do patients not carry it?

 

Some patients do not have access to epinephrine.  Although the drug epinephrine itself is not expensive, the devices used to administer it can be very costly.  Sometimes prohibitively so.  Many are working to reduce the price families must pay at the pharmacy.  The makers of Auvi-Q, for example, are offering their product for free to those with commercial insurance (including those with high deductibles and for whom it is not covered) in an effort to get epinephrine in the hands of patients who need it [read more here].  A generic EpiPen has just been approved by the FDA to be introduced in the coming year.

 

Teens are a group known for their non-compliance in carrying epinephrine.  Teenagers, wired to take risks and extra concerned about fitting in with peers, are often found without epinephrine when they critically need it.  In an effort to be like everyone else,  they some times purposely leave their auto-injectors when socializing with friends.  Adolescents will also mentally minimize the perils of leaving their auto-injectors at home and/or not reading ingredient labels while basking in the potential benefits of acting and operating like their friends and not drawing attention to themselves – a dangerous combination.

 

An Alarming Study

 

Dr. Dave Stukus and his colleagues from Nationwide Children’s Hospital conducted a study  four years ago of patients and their caregivers being seen by an allergist at their clinic.  Among their patients at high risk, only 40% carried auto-injectors even though 60% knew that epinephrine should be carried with them at all times.  Nearly 50% of patients carried expired devices and of the 60% diagnosed with asthma (which could make an anaphylactic reaction even more serious) only 38% carried had epinephrine with them at their clinic visit.

 

But Adults Surely Know Better…

 

Nope.

 

Adults with food allergies fared no better.  A survey was conducted earlier this year (March – June 2018) of 597 people representing themselves and their children (a total of 917 patients).   While the majority of those questioned filled their prescriptions for epinephrine, almost half (45%) didn’t have their auto-injectors with them at the time of their most severe reaction.  Shockingly, 21% didn’t know how to use their epinephrine auto-injectors (EAIs).

 

#AlwaysCarryTwo

 

In the same 2018 study, fewer than 25% of patients or caregivers routinely carried multiple auto-injectors despite the advice that all patients carry at least two self-administering epinephrine auto-injectors.  Carrying two EAIs is critical in case one fails or a second dose is needed before emergency services arrives.

 

To Sum It Up

 

According to Dr. Stukus, there are several reasons for not carrying epinephrine:

• inconvenience
• cost
• forgetfulness
• complacency if a long time has passed between reactions
• expiration of previous EAIs
• lack of understanding that patients should carry two EAIs at all times

and, I would add

• denial of severity of conditions and the reality of a reaction

 

Solutions

 

First, all patients need access to epinephrine.  Financial assistance is available!  If you need help affording an auto-injector, please consider savings programs offered by the various pharmaceutical companies.  The non-profit Kids with Food Allergies has an excellent article to help make EAIs more affordable,  What to Do if You Can’t Afford Epinephrine Auto Injectors.

 

Second, education about the difficulties and dangers of managing a severe allergic reaction without epinephrine is needed.  This begins in the doctor’s office.  Physicians should ask about how and how often patients carry their auto-injectors and discuss best practices to make carrying two EAIs a habit.  In between visits, patients can learn how to properly use an epinephrine auto-injector and why there’s no need to be afraid of using it.

 

Smart placement of epinephrine will help you remember to take it with you.  It is important to note that you cannot store auto-injectors in your car (temperature fluctuations can affect whether the device will fire properly and how well the medication will work once injected).  Instead, consider leaving it on a hook by the door you exit out of, next to your phone or keys, or set a reminder on your phone to alert you 10 minutes before you’re due to leave the house.

 

There are always many ways to carry epinephrine.  A purse makes it easy.  But a drawstring cinch bag, gym bag or a backpack will work for men.  Some auto-injectors fit right into a pant pocket!  There are specialty products that help you carry your auto-injectors in inventive ways, such as running belts, wristlets, arm bands, leg holsters, clip-on bags, etc.

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Lastly, make it a habit.  You know that feeling when you forget your phone?  Or your lunch?  With regular practice, remembering your epinephrine will become second nature.

 

As Dr. Stukus sagely points out, emergencies are never planned.  They are not predicted.  Epinephrine auto-injectors are meant to be kept in arm’s reach.  Carrying your epinephrine is certainly a lot less hassle than going to the emergency room for the night.

Yes, You Can Get a Food Allergy at Any Age October 1, 2018

Food allergies aren’t always something you’re born with.  Many believe that once they reach preschool age without a food allergic reaction, both they and their children are out of the woods.  Not so, says allergists.

 

Unfortunately, food allergies can begin at any age.  In fact, you can get a food allergy to any food at any age.  We can all agree; that’s a bummer!

 

Unfamiliar with symptoms and without epinephrine, many adults discover their allergy through a reaction.   My own father-in-law had enjoyed seafood for decades before having a severe allergic reaction (called anaphylaxis) on an airplane when he was in his forties.  Thirty thousand feet over the Atlantic Ocean, he was served shrimp – something he had eaten many times before.  No sooner had he finished his meal than his symptoms begin: swollen eyes and esophagus, itchy mouth and skin.  Thankfully, he made it to their destination with the help of an overwhelming amount of Benadryl.  But I think we can all agree, that’s no place to discover a food allergy.

It can be confusing to adults (as well as to their families and friends), when someone can tolerate a food one day and react to it the next.  As with all families adjusting to food allergies, there is a huge learning curve that accompanies diagnosis.  Adult food allergy patients need to relearn how to shop, cook, order food and – importantly – they must learn to recognize symptoms of allergic reactions including anaphylaxis.

 

Just as with pediatric food allergies, symptoms range from mild to severe to include:

• Itching or tingling mouth, lips and/or tongue
• Hives, itching skin, eczema
• Swelling of the tongue, throat, lips, eyes, face, or other parts of the body
• Wheezing, nasal congestion or other trouble breathing
• Abdominal pain, diarrhea, vomiting
• Dizziness, lightheadedness, fainting

 

Symptoms of a severe reaction (called anaphylaxis) include:

• Constriction of the throat or tightening of the airway
• A swelling or lump in the throat that makes it feel hard to breath
• Shock, a severe drop in blood pressure
• Rapid pulse
• Sense of impending doom
• Dizziness, lightheadedness, loss of consciousness

*Emergency medical care is needed if experiencing any symptoms of anaphylaxis.  Even after administering an epinephrine auto-injector, seek immediate medical attention.

 

Busy adults sometimes miss symptoms of food allergies.  On occasion, adults experience vomiting without itching, swelling or hives – a symptom which imitates a virus or the flu.  After a suspected reaction, adults should meet with an allergist.  At their first appointment, patients should also discuss their other medical conditions as well as bring a list of prescription medication they take.  Specialists can help decipher between symptoms of one condition and food allergic reactions as well as give advice about any issues with administering epinephrine or taking antihistamines.

 

Too little is known about why adults develop food allergies.  Fifty-one percent of people with food allergies developed at least one as an adult.  Approximately 5% of adults live with food allergies in the United States.  The most common among them is shellfish (present in 54% of adults with food allergies), followed by tree nuts (43%).  But adults suffer reactions to all kinds of food allergens.  Although you can truly get a food allergy at any age, most adult reactions occur between ages 30 and 40 and affect women more often than men.

 

There is an initial emotional burden of being diagnosed with food allergies.  This is common. Food allergies can be especially stressful as patients are adjusting to their condition and retraining their behaviors or overcoming a severe reaction.  Experiencing anxiety is normal to some degree [please read Managing Food Allergy Anxiety]; however, if the stress and anxiety of food allergies becomes overwhelming, it is recommended that patients reach out to a mental health professional and mention it to their allergist.  Both can work to give you practical and easy-to-implement strategies to reduce fears.

 

Including Food Allergic Students at School September 17, 2018

It’s the beginning of the school year!  Now is the perfect time to discuss best practices to keep kids with food allergies included in the classroom and beyond.  What are the best ways to keep a child safe at school?  How is teaching a food allergic child different from one without dietary restrictions?  How can teachers and parents better communicate to ensure a productive year together?

 

One of the most difficult and important places to manage food allergies is at school.  Parents, faculty, staff and administrators want and need to keep food allergic students physically safe during the school day – a place children spend the largest portion of their time outside the home. Inclusion at school is the “safe place” they need to develop psychologically and socially.

 

Where do schools begin and what factors should they consider?  

 

Education:  Not surprisingly, it all begins with EDUCATION.  Faculty and staff should be educated and reeducated about food allergies each year.  They should not only know:

• how to recognize the signs of severe allergic reactions (called anaphylaxis) and what those symptoms might sound like in the words of a young child
• how to react to an allergic reaction; and
• understand the basics of cross-contamination and ingredient label reading;

but they should also learn about the perspective of their food allergic students who experience anxiety and exclusion at higher rates than their peers.

 

I urge all schools to consider adding Food Allergy Education to their Health curriculum.  Students are exposed to the idea of food allergies without understanding exactly what that means. Understanding food allergies is shown to build inclusion and community, stoke empathy and protect peers in students pre-K through high school.  In less than 20 minutes, a teacher can cover a basic lesson plan on food allergies and reap all of the above benefits in his/her classroom for the entire year.

Exclude the FOOD (not the CHILD).

Eating In the Classroom:  Parties, holiday celebrations, and special events should be as inclusive and safe as possible.  I’ve heard from many families across the country whose children have been sent out of the room during class parties because their allergen was being served;  children who are sent to eat with the school nurse instead of their friends; children who are told to stay away from the group who are eating an allergy-laden snack while they watch.  When such a thing occurs, the message that student receives from their teacher is that their classmates’ enjoyment is more important than they are.  At such times, the student will struggle with feeling of self-worth and the [correct] impression that their teacher doesn’t know how to handle food allergies.

 

Eating Outside of Class:  Prepare for field trips by remembering food allergic students.  Snacks and lunches need to be safe.  And, don’t forget to bring emergency medication (and store it with a chaperone AT ROOM TEMPERATURE).  The best way to keep these special learning experiences special is with advanced preparation and by communicating with parents and the students directly to address concerns and implement solutions.

 

Think through the full school day for an allergic student.  How will they fare on the bus ride home?  What is the school’s policy on eating on the bus?  Is it enforced?  Is the bus driver trained and prepared to deal with an allergic reaction?  Is an allergic student allowed to carry their own epinephrine?  How does the driver handle bullying on his/her bus?  Addressing the entire school day from door to door will make a child with food allergies feel protected and looked after.

 

Bullying by Peers or Adults:  Exclusion, name-calling or verbally doubting sets an example for the other students that such behavior is acceptable and results in stigmatizing the food allergic student. Bullying is another serious problem for all students but can have serious and even deadly results for students with food allergies.  Read the statistics here to understand the scope of the problem which is often based at school.

 

Uninformed Teachers:  Students with food allergies are savvy about their condition and quickly note when others aren’t as knowledgable.  Teachers who demonstrate a lack of knowledge do not instill confidence in even the youngest food allergic child.  Students who are concerned about surviving the day in their classroom, cannot learn.  Creating “safe zones” is psychologically beneficial to students with food allergies.  One such example is a peanut-free table or a classroom that bans a certain food for the health and protection of a student’s life. Another method is to establish a special line of communication between the teacher and student so they can express their concerns privately.  I recommend that teachers meet with a food allergic student and their parents to acknowledge that they understand the parameters of that child’s allergy, that they take it seriously, and agree upon the best method of letting parents know about upcoming events so that the family can prepare.

 

Solid and Protected Food Allergy Policies:  Schools must create a safe environment for students with life threatening food allergies. This protection begins with a comprehensive food allergy policy – one that balances safety with an emphasis on maximum inclusion.  The policy and procedures regarding food allergies need to be widely communicated, easily accessible, consistently applied and protected.

[Read: Food Allergy Policies at School (Aug. 14, 2018) – Considerations and Perspectives for more on what goes into a well thought-out policy.]

 

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Inclusion means everything to food allergic students who already feel different from their peers.  Inclusion gives students a supportive platform from which to conquer the world.  Schools need safe places for kids to learn, socialize and play.   They are more than a place to grow academically; schools should be a space for students to blossom psychologically as well.  A lot of thought should go into how to include every child in the classroom – it might make all the difference for your students AND their families.

 

 

FDA Approves First Generic EpiPen September 6, 2018

The U.S. Food and Drug Administration (FDA) has recently approved the first generic EpiPen to be made by Teva Pharmaceuticals.  There are currently several brands of epinephrine auto-injectors available to patients:  Mylan makes EpiPen, EpiPen Jr. and its own brand-sponsored generic; kaléo offers Auvi-Q; and Impax Laboratories markets Adrenaclick.  However, this generic EpiPen by Teva Pharmaceuticals will be the first time a non-brand alternative is available.

Obtaining approval from the FDA for a generic was complicated by the fact that both the medication (epinephrine) as well as the device itself had to be reviewed.  There is no firm estimate on when to expect this new generic on the market or the cost of the product once it gets there.

 

The competition generated by a generic should help the epinephrine auto-injector market. To date, Mylan’s EpiPen has nearly monopolized the market but its exorbitant cost has gained unwanted attention.  Mylan’s EpiPen price has risen over 400% in the last 10 years to over $600 a set.  To counter the negative press, Mylan created their own generic EpiPen which still average $300 per set.  Patients and families are hoping the introduction of a true generic device will drive down the cost of the absolutely necessary, life-saving devices as well as help to prevent epinephrine auto-injector shortages like the one we’re experiencing presently.  They’re also hopeful this generic will help expand options covered by their insurance plans.  Doctors, emergency workers and advocates are also optimistic that this may help get epinephrine in the hands of patients who may otherwise be unable to afford it.

 

 

In-Flight Free-From Meals – Airlines Addressing Dietary Restrictions August 29, 2018

 

If you’re taking to the air soon, you may be pleased to be able to request a special meal from your air carrier.  Airlines all over the world are responding to calls for special meals ranging from low-sodium and halal (made without pork or alcohol) to gluten-free.

 

Requests for special meals have increased over the years.  Historically, passengers have asked for specific meals for medical reasons or those that adhere to their belief system.  Experts wonder if the number of requests has increased because of the popularity of certain diets or the idea that special meals may be healthier or better tasting than those regularly served.  While that remains to be seen, the willingness to offer such meals is uplifting to patients with food allergies.

 

Both domestic and international travelers can take advantage of special orders covering a wide range of meal choices, but which ones your airline offers will vary from carrier to carrier, ticket type and destination.

 

Here’s a sampling of available allergy-friendly meals by airline.  As you will see, the meals Click on each airline to be directed to their site more details, including their policies on nuts and other allergens.

 

 

Domestic Flights:

 

American Airlines

Glutose-Intolerant

Lactose-Intolerant

Vegan

 

Delta Airlines

Gluten-free

Vegetarian

 

United 

Vegetarian

Gluten-Intolerant

United policy for passengers with food allergies

 

 

International Carriers:

 

ANA

Allergen-Free Meals (choice between the 7 Allergen Free Meal and the 27 Allergen Free Meal)

7 Allergen Free Meal for Children

Gluten-Friendly

Low-Lactose

Seafood Meal (does not contain meat)

 

British Airways

various Vegetarian Meals

Gluten Intolerant

Low Lactose

 

JAL 

Gluten-Free

Vegetarian

Seafood Meal

Minimal Allergen Menu Meals

 

Luftansa

Gluten-Intolerant

Lactose-Intolerant

Vegan

Vegetarian

 

Malaysia Airlines

Gluten-Intolerant

Low Lactose

Vegan

various Vegetarian Meals

Seafood Meal

Special Meals

 

Qatar Airways

Gluten-Free

Non-Lactose

various Vegetarian Meals (also excludes fish, seafood, eggs and dairy)

 

Singapore Air

various Vegetarian Meals

Vegan

Gluten Intolerant

Low Lactose

Non-Strict Nut Free Meal

 

Turkish Airlines

various Vegetarian Meals (also excludes fish, seafood, eggs and dairy)

Gluten-Free

Low-Lactose

 

 

Please comment below if you’ve had one of these meals and let us know how it was!

EpiPen Shortage: What You Need to Know Now August 27, 2018

 

You’ve likely heard that there’s a shortage on EpiPens through the United States, Canada, United Kingdom and Australia.  What began as spot shortages throughout Australia and North America has escalated into a worldwide panic.  Let’s separate fact from fiction to better understand this ongoing problem and talk about interim solutions.

 

1. There is NO epinephrine shortage.  The life-saving drug epinephrine, also known as adrenaline, is in full supply.

 

2. The shortage refers to pharmacy stock of Mylan’s EpiPen , EpiPen Jr. as well as its authorized generics in North America and the UK and only EpiPen 0.3 (300 mcg) in Australia.  According to Mylan, this shortage is due to manufacturing delays by their partner Pfizer/Meridian.

 

3.  There had been a shortage of Impax Laboratories’ Adrenaclick, but that appears to have been resolved.

 

4.  Some pharmacies in the United States (including Kaiser) are reportedly rationing out only ONE pen to customers.  This is not recommended.  Customers should always carry two auto-injectors in case one pen malfunctions or two doses of epinephrine is required while waiting for emergency services.

 

5.  There IS NO SHORTAGE of Auvi-Q – the innovative epinephrine auto-injector that talks you through how to administer a shot and has a retractable needle to prevent accidental injury.

 

While this problem affects everyone trying to refill a prescription at this time, I am particularly concerned with those trying to fill a prescription for the first time.  Those patients and families who are just getting a diagnosis and hoping to find a little security in the sometimes overwhelming world of food allergies may find themselves unprepared or totally confused by the process.  I’m also worried for schools and daycares, whose stock epinephrine program saves lives.

 

What can you do while you’re waiting for the EpiPen supplies to increase?

 

1. The U.S. Food and Drug Administration has extended the expiration date of Mylan’s EpiPens by 4 months.  There is a list of which batches are affected and their extended expiration dates listed on FDA’s site – be sure to check your boxes.

 

2. Should you need a set of epinephrine auto-injectors now, there ARE alternatives to EpiPens:

• In the United States, Auvi-Q is in full supply.  Please visit Auvi-Q’s website for instructions on how to arrange direct delivery.
• Adrenaclick is also in stock in the United States.  Talk to your doctor and pharmacist about getting this filled in EpiPen’s place.  Be reminded, you’ll need to order a free trainer from Impax Laboratories to practice on this device.  It’s smaller than an EpiPen but operates just a little differently.  You may call Impax Laboratories at 1-855-EPINEPH to order them directly.
• In the UK, both Jext and Emerade are available epinephrine auto-injectors.

 

3.  Should you prefer to wait for EpiPen to become available: 

• Check the expiration date on your auto-injectors.  As long as they are stored at room temperature (and not, for example, in the car in the heat), you should be fine to use them past their expiration date according to the FDA.  According to Dr. Baker (formerly director of FARE), EpiPens can be used up to 6 months past their expiration date.
• Check the epinephrine in your EpiPen.  If you look through the window of your EpiPen and see that the epinephrine is discolored or cloudy, it is no longer good.
• Be sure to speak with your child’s school about the expiration date extension so that you will be allowed to store that set of EpiPens there.
  • Make a plan (and put it on the calendar!) to replace the EpiPens and deliver a fresh set to school when they become available;
  • Discuss if and how procedures will change with an expired EpiPen.  Will the school use that auto-injector or will they choose to use stock epinephrine instead?  Does that effect the timing of a call to emergency services? What is YOUR preference?
• As always, store your epinephrine properly.  That means keeping them at room temperature as much as possible.
• Be careful about accepting a refill from a pharmacy that wants to give you only one auto-injector, splitting up a set.  Heads up: We have heard reports of pharmacies charging a regular co-pay for even just ONE pen.  And, again, patients at risk for anaphylaxis must ALWAYS CARRY TWO auto-injectors at all times.
• The beginning of a school year is the perfect time to review food allergy safety with your children (wash hands with soap and water before eating, no sharing food, symptoms of a reaction, what to do and who to tell).  Here are some great books to use as a jumping off point for your conversations.

 

If you’re new to the food allergy world and getting an epinephrine auto-injector for the first time, consider one of the available auto-injectors on the market if possible.  They are all equally effective and potent.  You may even find that they fit your needs and lifestyle Discuss with your doctor which one may be most appropriate for you based on your age, capabilities and lifestyle.

 

For more information, please read WebMD’s article “EpiPen Shortage Causing Concern as School Starts”.

Food Allergy Policies at School – Considerations and Perspective August 14, 2018

 

As the school year beings for some and approaches for others, now is an excellent time to reflect on the food allergy policies and procedures at your school. As research and information about best practices emerge, schools should know that small changes can have a big impact.  Camps may also wish to track these same kind of policy shifts to keep campers safe while in their care next summer.

 

Why do schools need a food allergy policy?

 

Schools must create a safe environment for students with life threatening food allergies. Administrators should begin by creating a comprehensive food allergy policy for the entire school or school district.  Policies may vary from school to school depending on their experiences and limitations.  In fact, allergists are hesitant to suggest blanket recommendations for that reason.  Whatever each school decides, the policy and procedures set regarding food allergies need to be

1.  widely communicated;

2.  easily accessible; and

3.  consistently applied and protected.

These policies serve as a baseline for food allergic families to make decisions about additional measures they may need to take in order to keep their child safe.

Where do schools begin and what factors should they consider in regards to their food allergy policies and procedures?  

When formulating food allergy policies and procedures, schools should consider some of the following factors:

1.  Age of students and their cognitive and physical development:  Schools may have different policies for students of different ages.  For example, elementary schools may forbid a child from carrying his/her own epinephrine auto-injector while a middle and high school may allow that.
2. Common risks facing the age group of their students:  Are the students allowed to share food without permission?  What are the school’s thoughts on classroom parties and celebrations? Do your students commonly face peer pressure or bullying? Are they allowed to snack/eat independently (away from a cafeteria or not during a traditional lunch time)?
3. Stock/unassigned epinephrine: In many states, schools are either required or allowed to keep unassigned (or stock) epinephrine on-hand in case of an anaphylactic reaction.  That means that if a student, staff, or faculty member has a reaction and does not already have epinephrine prescribed to them and stored at school, the unassigned epinephrine may be used.  Consider whether your school should carry this useful medication and who should be in charge of administering it.
4. Nursing schedule and availability:  Does your school have a full-time nurse?  How many students is he or she responsible for looking after?
5. How and where to store epinephrine: Is the nurse’s office centrally located or would it be wise to store epinephrine with a trained administrator closer to a lunchroom or classrooms?
6. Hand washing: Hand sanitizer does not remove the proteins that can cause a food allergic reaction.  Only a scrub with soap and water can do that. Are the students required to wash hands at any point in the day?
7. Communication with parents:  This piece may not make it into policy, but it should be discussed.  Advanced communication with parents regarding upcoming class parties, school celebrations involving food, field trips, and other food-related events allows parents and teachers to make appropriate accommodations to keep their food allergic student safe.
8. The classroom versus the lunchroom: How will food allergy policies differ by location within the school?  Rules in the classroom regarding food may be very different from rules in the cafeteria.  Who will be responsible in which location?
9. Field trips: Each school should consider who is responsible for carrying and administering epinephrine when students are away from school.  Go over a plan should someone have a severe allergic reaction.  Be reminded that epinephrine must be kept at room temperature, so if you are spending time outside in hot or cold weather, epinephrine will need to be temperature controlled.  Communicate this plan to teachers and parents so that everyone is on the same page.
10. Faculty and staff education:  Faculty and staff should be educated and RE-educated about food allergies each year.  They must learn to recognize the signs of severe allergic reactions (called anaphylaxis) and what those symptoms might sound like in the words of a young child.  [See The Language of Food Allergies for the symptoms and language students may use to describe an allergic reaction.]  They need to learn how to respond to an allergic reaction.  Understanding the basics of cross-contamination and ingredient label reading, among other lessons, will help protect food allergic students in their classrooms.

 

Food allergies are often misunderstood.  Not only can they cause severe allergic reactions that can be fatal, but they cause a great amount of time, preparation, and anxiety for students and parents alike.  This anxiety can hamper a student’s ability to learn. Therefore, it is imperative that schools make every effort to provide a safe environment for learning both academically and socially.  With two students in every classroom suffering from food allergies, it is critically important that schools consider how they can best prepare families and teachers to protect these students.