Allergy Shmallergy

Simplifying life for families with food allergies.

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

Filed under: Preparedness,teens — malawer @ 9:00 am
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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.

 

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.

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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.

 

 

 

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

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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.

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

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  • 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

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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.

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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.

 

#MinutesMatter: Be Prepared for Severe Allergic Reactions March 2, 2018

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I hope that no one finds themselves in the situation of experiencing a severe allergic reaction.  But it pays to be prepared.  Studies have shown that delayed use of epinephrine is the leading cause of negative outcomes during anaphylaxis.  That’s why #MinutesMatter in the event of an emergency.

 

What can you do to prepare for an unexpected allergic reaction?

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1. Have a current Emergency Action Plan (EAP) and review it.  Emergency Action Plans are forms filled out by your doctor or allergist which outline actions to take in the event of an allergic reaction.  They are arranged into If/Then actions based on symptoms making it easy to determine what you should do. And, EAPs should always note the presence of asthma in a patient, as asthma can complicate a reaction.  To learn more, please read Allergy Shmallergy’s Emergency Action Plan or obtain a copy like the one created by the American Academy of Pediatrics.

2.  Lay patient down.  If the patient is vomiting, lay them on their side. Elevate the legs if possible.  This position helps with blood flow.

3.  Administer epinephrine.  The sooner, the better.  Should you need to administer epinephrine, do not wait.  Early administration of epinephrine is associated with the most positive results, including less medication needed at the hospital.

4.  In the case of severe allergic reaction (anaphylaxis) first administer epinephrine, then call 911.  You will need to go directly to a hospital after experiencing anaphylaxis even if symptoms subside.  This is because patients require additional monitoring and because secondary reactions can occur – even hours after contact with a suspected allergen.

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Other keys to success:

Always carry two epinephrine auto-injectors with you wherever you go. Most allergic reactions occur between seconds to 60 minutes after coming into contact with an allergen.  However, in rare cases, allergic reactions can be delayed.  Epinephrine is the only medication that will stop an anaphylactic reaction.  

Train your tween, teen and friends about the symptoms of anaphylaxis, how and when to use an epinephrine auto-injector.  Make sure they understand that there’s no major downside to using an epinephrine auto-injector.  Remind them to inject first, then call 911.

Carry Benadryl liquid or Zyrtec syrup for minor allergic reactions.  In the case of anaphylaxis, patients will still need epinephrine to stop this type of severe allergic reaction.  However, if someone is experiencing minor reactions (for example: hives, itchy mouth) products containing active ingredient Diphenhydramine will help make things more comfortable.

 

 

Most importantly, follow this Emergency Room mantra:  If you THINK you need to use epinephrine, you DO need to use it.  

 

In a severe allergic reaction #MinutesMatter.

 

 

 

 

Prep Your Meds for School: Refill Options July 28, 2017

Time to get your emergency medications ready for school.  Don’t worry:  there’s still lots of summer fun to be had!  But to maximize summer fun over back-to-school frenzy, there are a few things you can do.

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  1. Check the Date:  Check the expiration dates on your epinephrine auto-injectors.  If they are due to expire between now and December, it may be a good time to consider refilling your prescription.
  2. Know Your Options:
    • There are several choices of epinephrine auto-injectors these days and they all efficiently deliver the same life-saving drug (epinephrine) in different ways.  I’ll outline those different auto-injectors below.
    • Talk to your doctor and consider your lifestyle when choosing your auto-injector.
    • Be sure you, your school nurse, caretaker, and child are all familiar with how to operate the auto-injector(s) you choose to stock at home, school and elsewhere.
  3. Update Your Emergency Action Plan:  Your doctor may have provided you with one or you can take Allergy Shmallergy’s Emergency Action Plan to your doctor on your next appointment.  Make a copy for home, your car, on-the-go, and school.
  4. Ask Directly:  You may need to ask your doctor specifically for the auto-injector you wish to use.  Some doctors prescribe only one without discussion, but are certainly willing to write a prescription for the auto-injector that works best for you.

 

What ARE the options for epinephrine auto-injector:

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Auvi-Q:

Yes, it’s back on the market and better than ever.  Auvi-Q delivers epinephrine via a compact package that speaks to you.  You heard that right: it talks you through an injection, even counting down the length of time you are supposed to hold the device in place.  Plus, the needle automatically retracts, reducing the possibility of post-injection injury.  Each Auvi-Q is about the size of a deck of playing cards, easy to carry for everyone (especially teens, young adults and fathers – who can fit them in their pockets).

 

*Auvi-Q automatically ships and delivers their auto-injectors directly to you.  Initiate this process with your doctor.  To read more about their direct delivery service as well as their cost-coverage programs, refer to the Affordability program page.

 

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Adrenaclick:

Adrenaclick has a slimmer profile than the well-know EpiPen, but is about the same length. Adrenaclick is a no frills epinephrine auto-injector, often used as a generic for EpiPen.  In fact, responding to the rising costs of brand name epinephrine auto-injectors, CVS pharmacies (among others) replaced its stock of auto-injectors with Adrenaclick. In their words, “Patients can now purchase the authorized generic for Adrenaclick®… This authorized generic is a Food and Drug Administration (FDA)-approved device with the same active ingredient as other epinephrine auto-injector devices.”

 

*IMPORTANT, Adrenaclick operates differently than EpiPens and they DO NOT come with a trainer.  If you choose to use this useful auto-injector, be sure to also place an order for an Andrenaclick trainer.  And, do your research for best pricing locally.

 

EpiPen:

EpiPens are the most widely used and most familiar of the epinephrine auto-injectors.  In fact, its familiarity is what keeps many customers coming back.  School nurses and even non-allergic individuals may be more accustomed to its look and how to use it.  In addition, EpiPens are substantial – making them easy to find in a backpack or purse.  In 2016 Mylan, the manufacturers of EpiPen, released a generic of its own product in response to public pressure over its pricing.  Both products contain the same medication and use the same or similar injector mechanisms.  EpiPen’s price has not been reduced in any way and is the most expensive auto-injector on the market.  The generic version is less expensive, but still a price worth considering for many.

*Mylan does offer coupons which can be found on their website.

 

Food Allergy Retrospective: How Far Have We Come? May 17, 2017

When the term “food allergies” was first mentioned in our lives in 2005, my son was only a few months old.  Already suffering from severe, body-encompassing eczema and a family history of food allergies, my pediatrician mentioned that we’d have to approach first foods very carefully with him.  I thought she was being WAY overcautious.  Like a ridiculous amount.  I was told to avoid feeding him anything with peanuts, tree nuts, milk, egg, wheat, soy, shellfish, fish, strawberries, pork, and corn in it.  I remember thinking, who had ever heard of anyone allergic to corn?!  And, so much for Cheerios as a finger food!

 

Now twelve years later, I think about what a genius that same pediatrician was and what a long way we’ve come since that first discussion about food allergies.

 

In 2005, there were approximately 11 million Americans living with food allergies.  Today, there are 15 million. And that number is growing.  Back in 2005 there may have been 1 child with food allergies per class; now there are at least 2 in every classroom.

 

In 2005, there were no food allergen labeling laws.  Manufacturers could “disguise” ingredients under a variety of names.  If you were allergic to dairy, for example, you had to memorize over 45 different names of ingredients that contained milk protein (whey, cream, casein, lactose, curd, rennet, ghee, flavoring… read the complete list here).  There were no suggestions to include voluntary “may contain” statements.  And, manufacturers were not well informed about how to respond to customer service questions about the safety of their products.

 

In 2005, consumers had less choice of emergency medication but it was far more affordable.  A pair of EpiPens cost only about $50. Other epinephrine auto-injectors were hard to come by and Auvi-Q wasn’t even invented yet.

 

In 2005, I felt alone with my son’s condition.  I started writing about food allergies, in part, to reach out to other like-minded parents experiencing the same daily struggles and triumphs that I was.  There was no research about the psychological impact of growing up with food allergies.  I was figuring out how to parent a confident, competent kid AND how to safely navigate the world with food allergies all at once.

 

I am so thankful to you all today for being part of the Allergy Shmallergy community – for giving me feedback, reminding me that we’re not alone running into and overcoming food allergy-obstacles, and for supporting each other, helping to make each other’s lives simpler and happier.

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