Food Allergy Resolutions January 7, 2020

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Happy New Year!

 

Each new year brings the hope of getting things right, of bettering ourselves.  When we set new year’s resolutions, we often seek self-improvement, time for personal passions, valuable social interaction, travel and adventure.

 

For those with food allergies, a key component to all of those resolutions is sticking to good food allergy management practices.  There’s nothing you can’t do with food allergies, but you need to make sure you’re safe and prepared when you do it!

 

Setting small achievable goals will help reset your habits and keep you safe as you pursue your dreams.  Here are some food allergy resolutions we ALL should keep this year:

 

1. Always carry 2 epinephrine auto-injectors.  There are many varieties on the market today in all shapes and sizes.  Find one that fits your lifestyle and carry it with you everywhere (yes, everywhere).  This may take some creativity, but it’s critical because early use of epinephrine is shown to save lives and reduce complication at the hospital.

 

2. Know the signs and symptoms of an allergic reaction.  A severe allergic reaction, called anaphylaxis (ANA-FIL-AXIS) can be VERY SERIOUS and even fatal.  That’s why it’s key to know the signs of a reaction and to know what to do in the first few minutes.  The Language of a Food Allergic Reaction outlines both the symptoms as well as how a young child might describe them.

 

 

photo credit: mia! via Flickr, creative commons (CC BY-SA 2.0)

3. Know the labeling laws. Food manufacturers are required to label for the Top 8 allergens – these are responsible for 90% of all allergic reactions.  But they are not required to label for cross-contamination or any allergen outside of the Top 8.  Are your allergens in that list?  What else should you know?  The Ins and Outs of Reading Food Labels is critical to help you make safe decisions for yourself and your family.

 

 

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4. Teach ONE person how (and when!) to use an epinephrine auto-injector.  Food allergies are a growing problem.  Statistically, 2 kids in every classroom have them. So do 1 in 10 adults.  We either know someone with a food allergy or we are allergic ourselves.  To protect patients and create food allergy allies, let’s teach one friend or family member (who doesn’t yet know) how to use an auto-injector.  Let them use a trainer if you have one – this will empower them should they need to use the real thing in an emergency.  Even elementary school kids can recognize symptoms of an allergic reaction and be taught to get an adult or nurse and call 911.  It’s easy!

 

 

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Send us your new year’s resolutions!  We love to hear what kinds of wonderful and exciting things you have your sights set on!

 

 

Donate These Allergy-Friendly Foods This Holiday Season November 25, 2019

 

Happy Thanksgiving!

 

There is so much to be grateful for this holiday season – family, friends, and good health among so many other things to be thankful for.  But some families are struggling, worried about where they will get their next meal.  When you add food allergies to their list of concerns, their situation goes from difficult to dire.

 

Food banks and food pantries will be feeding families through the holiday season and throughout the year.  And, reflective of the prevalence across the United States, 1 in every 10 adults and 1 in every 13 kids that uses these services will have a food allergy.  Many will not list their food allergy, as food allergies often go undiagnosed.  But obtaining a ingredients to make a safe meal will not be easy.

 

If you donate to food banks or food pantries this season, please consider donating some of these much needed, shelf-stable items for clients with food allergies:

• Gluten-free bread (shelf-stable, unrefrigerated)
• Soy, Rice and Almond-Milk (shelf stable, unrefrigerated)
• Gluten and nut-free cereals
• Sunbutter, Soynut butter, and almond butter
• Nut-free granola bars (such as Enjoy Life, Made Good, etc)
• Gluten-free pasta and GF pasta meals
• Soy-free cooking oil (such as canola, olive, etc)

 

Antihistamines May Endanger Patients Experiencing Severe Allergic Reactions November 20, 2019

When to use antihistamines and epinephrine has always been a point of confusion for the food allergic patients and caregivers.  But a 2019 study out of New York helps to clarify the role of antihistamines in serious allergic reactions.

 

Severe allergic reactions, called anaphylaxis, are serious and can become life-threatening very quickly.

 

 

 

 

A recent study by Dr. Evan Wiley et al. suggests that administering antihistamines, such as Benadryl and Claritin, to patients who may be experiencing anaphylaxis can put them at risk for a more serious reaction.

 

 

The four year study which was just presented at the American Academy of Pediatrics national conference in October 2019, reveals that 72% of patients who use antihistamines at home to treat an allergic reaction delayed seeking medical care.

 

This puts patients at risk.  

 

Old, now outdated guidance, used to suggest that the first line of defense for an allergic reaction was Benadryl or another antihistamine.  No more.

 

 

We now know that delayed administration of epinephrine is associated with more severe reactions – reactions which require more medication and more frequent hospitalizations.  That means the longer a patient goes without epinephrine and the attention of emergency care, the worse their condition may be and the longer it will take to recover.

 

The author notes that epinephrine is the ONLY known lifesaving medication and a delay in receiving epinephrine can prove fatal.

 

IMPORTANT TAKEAWAY

At the first sign of a severe allergic reaction (anaphylaxis), patients and caregivers should use their epinephrine auto-injectors and seek emergency medical care IMMEDIATELY.

 

The new advice is “Epi first. Epi fast.”  And call 911.

 

 

Review the symptoms of anaphylaxis here.

Here’s how a child might describe an allergic reaction.

Needle-Free Epinephrine May Soon Be a Reality October 15, 2019

 

By now, we all know that epinephrine is the first – and best – line of defense against a severe food allergy reaction called anaphylaxis.  But when symptoms of anaphylaxis first appear, many patients and caregivers hesitate to give it.  Why?

 

Not only are patients unsure about the timing to deliver a dose of the life-saving medication, but they tend to pause at the idea of giving an injection.  Parents worry that it will be difficult to administer or that it will scare/hurt their children. And, patients are at risk for minor injuries associated with delivery such as lacerations and misfirings.  Doctors and clinicians say epinephrine auto-injectors are “underused” in an emergency.  Delays in administration of epinephrine during anaphylaxis put the patient at risk for a more severe reaction that could require more medication to stabilize.

 

To date, patients have had a single option for getting a dose of epinephrine: an injection given to the patient through the outer, muscular part of the thigh.  But the food allergy community has long wondered, is there another way?

 

Enter: intranasal epinephrine.  

Essentially: epinephrine delivered through a nasal spray.

 

Researchers have examined how well the body absorbs epinephrine when it is given intranasally as compared to intramuscular injection (the way epinephrine is currently administered through auto-injectors).  What they found surprised us all:  epinephrine can be absorbed and distributed throughout the body as a nasal spray just as well as it would an injection.

 

This is wonderful news for patients and caregivers that are afraid of needles.  But it’s also good news for those wanting to help in an emergency.  Because nasal sprays are a less invasive treatment, patients and caregivers may find themselves more likely to act quickly, administering much-needed epinephrine sooner and more frequently than they would otherwise.  Nasal sprays could make acting in those first critical minutes of anaphylaxis easier which could make follow-on emergency treatment less complicated and would ultimately save lives.

 

A few pharmaceutical companies have begun developing intranasal epinephrine products.  One such company is Bryn Pharma which developed a portable, easy-to-use spray (currently referred to as BRYN-NDS1C). BRYN-NDS1C was granted Fast Track Designation by the FDA and is currently undergoing human trials.  Bryn’s nasal delivery device has already been approved for use in other conditions by the FDA.

 

Another company, ARS Pharmaceuticals, whose product is called ARS-1, was also given Fast Track Designation to develop intranasal epinephrine.

 

Studies and trials continue, while questions remain about the efficacy of this delivery system when a patient experiences such factors as nasal/sinus swelling or moderate to severe congestion.

 

Although final approval by the FDA and ultimate delivery of this medication to customers is still unknown, we should all have high hopes for more and innovative epinephrine options to consider in the future.

 

What Food Allergy Kids are Wondering October 3, 2019

 

I just returned home from the ever-impressive FACES conference in Chicago. This wonderful conference puts patients and caregivers in the room with researchers, physicians, psychologists, counselors, advocates and experts who lead them in discussions about the present and future of food allergy.  It is a fascinating, energizing, and supportive event.

 

 

I learned so much over the course of my FACES experience, but one session stands out.  Throughout the day, any attendee – child or adult – could put a question in a box that would be read anonymously and answered during a session, titled, “FACEless, What Do You Want Your Parents to Know?  What Do You Want Your Kids to Know?”

 

The information gained from this session was enlightening – and it wasn’t just the answers (however incredibly informative) that interested me most.  It was the kinds of  concerns on our children’s minds that truly stood out.

 

Do you trust us when we’re out with our friends?

Are my food allergies a burden to you?

Do my food allergies scare you?

What worries you the most about my food allergies?

 

In addition to managing their own concerns and regulating their own emotions, some food allergic children are worried about how their parents are coping.  This is an additional weight they carry on top of the demands food allergies naturally come with.

 

Food allergies have been cited to lower the quality of life for patients, increasing incidences of:

• anxiety
• stress
• depression
• social isolation

 

At the root of this emotional strain is the hardship of food allergy management.  Patients are saddled with many additional responsibilities – often beginning at a young age.  They must understand where risk exists, how to react in an almost-inevitable emergency, cope with feelings of insecurity and fear and they bear the obligation of educating others, communicating their condition and remaining firm in the face of misunderstanding or objection.

 

How do we address these silent concerns our children may carry with them?  

 

How can we allay their worries so they can concentrate on the busy work of childhood and adolescence?

 

 

Talk the talk and walk the walk:

 

• Demonstrating a can-do attitude and verbalizing problem solving can be very empowering.

 

• Model positivity and embrace the values and guiding principles that are important in your lives (kindness, inclusion, empathy, etc).

 

• Validate the emotions patients are experiencing and discuss productive ways to manage uncomfortable feelings.

 

• Involve kids and adolescents in overcoming obstacles.  Teamwork and supportive coordination is critical to security and well-being.

 

• When it comes to the sensitive conversations about how you (the caregiver) are coping, model healthy emotional management and focus on your love for the patient.  It’s okay to acknowledge your feelings with your children – it shows you’re human.  Be sure to also show them your resilience.  Talk about how you handle these feelings and ask them what they do when they feel overwhelmed or insecure. Talking about how you feel encourages your children to be honest about their real feelings and experiences.

 

• Let negative emotions help motivate you in positive ways.  Focus on the outcomes you’d like to see.  An example conversation might begin, “When you leave the house without your auto-injectors, I do get worried you’ll be unprepared for a reaction. I never want you to feel sick and be caught without your medicine. Let’s come up with a way I can help you remember and find an easy way to carry it.”

 

• IMPORTANTLY, reassure your children that you will do everything you can to keep them safe and take care of them.  Make sure they know they can talk through future food allergy anxiety and challenges with you.  Reinforce that you are right there with them, partnering with them to overcome any obstacles in their way.

 

The FACES conference was so incredible and this session will sit with me for a very long time.

 

For more information about the psychological side of food allergies, please read:

Parenting Positively in the Face of Food Allergies

Identifying and Recognizing Emotions

Managing Food Allergy Anxiety

 

 

FDA Review of Aimmune Peanut Therapy September 13, 2019

 

AR101 Mtg

FDA APAC Mtg Re: AR101

Food & Drug Administration

FDA APAC Mtg Re: AR101

Open Hearing

 

FDA APAC Mtg Re: AR101

AR101 Mtg

Erin Malawer, Executive Director, AllergyStrong

Open Hearing

Food & Drug Administration

FDA APAC Mtg Re: AR101

 

I was so honored to be chosen as a speaker at the US Food & Drug Administration’s (FDA) Allergenic Products Advisory Committee (APAC) meeting (September 13, 2019).  The purpose of this groundbreaking hearing was for the APAC to have a discussion and make recommendations to the FDA on the safety and efficacy of Aimmune’s AR101 peanut allergy treatment at reducing the risk of severe allergic reaction (anaphylaxis) after accidental and unintended exposure in children and teens with peanut allergy.

 

Representatives of major food allergy non-profits, knowledgable doctors with deep experience with desensitization, experts in psychology, the underserved population, patient advocacy as well as affected families offered an honest and complete picture of the lives and challenges of living with food allergies to the APAC panel.  Testimony focused on quality of life, psychosocial impact of food allergy, daily challenges, and unmet needs.  Discussion also centered on medical guidance, patient choice in regards to risk/benefit of AR101, and education as it relates to AR101 therapy.

 

It is my hope that the committee approves this treatment.

 

Until now, food allergy families have had only one management option: avoidance.  If the FDA approves AR101, it will standardize dosage, treatment protocol and, hopefully, increase its accessibility.  AR101’s approval could pave the way for more treatment options down the road.

 

APAC has recommended AR101 for approval.  Stay tuned for the full-FDA update.  Approval expected January 2020.

 

Here is the testimony I gave today:

---

Erin Malawer

Executive Director, AllergyStrong 

 

Food allergies are a challenge that affect both the physical safety as well as mental health of patients and caregivers.  Bringing AR101 (Palforzia) to market as a treatment option has the potential to greatly improve quality of life for these families.

 

What is the experience of having food allergies for patients?  In the words of my 14 year old son, “it’s a second, full-time job.”  And it starts the moment patients wake up beginning with:

• The toothpaste they use to brush their teeth;
• The sunscreen they wear;
• The laundry detergent they wash their clothes with; and
• The lip balm I wear when I kiss my son goodnight.

 

Everything is a risk.

 

And, then there’s the FOOD!  Meals, snacks at school, the baseball stadium, the movie theater.  Patients must be knowledgeable about ingredients; how and where food is prepared and processed; as well as how to communicate and educate others about their condition.  The burden falls on families and caregivers to prepare safe food for holidays, school celebrations, birthday parties, field trips, and travel.

 

The thought and preparation is endless.  Food allergies are always on our minds.

 

Anything misread, any small misstep could potentially endanger a patient’s life.

 

 

The solution we’ve been given to keep him safe is simple, but daunting:  Avoid.

 

In order to do that effectively, each patient and their caregivers must understand both the seriousness of food allergies and the risks of cross-contamination.   But, we also need to be intimately familiar with labeling laws and loopholes as well as manufacturing practices. 

 

That keeps my child relatively safe at home.  But what about when he – and millions of other allergic children – step outside and navigate the real world?

 

Avoidance is challenging – it relies on the understanding of others – who are less experienced – for our health and safety.  Avoidance is cumbersome – labeling laws are incomplete, manufacturers aren’t always forthcoming and decision-making, even at its best, is difficult.  Avoidance accepts food allergies and all the associated worry, guilt, and burden as a life sentence and – because we all make mistakes – it accepts reactions as an inevitable. 

 

From an early age, my son understood these risks.  He has lived under the stress and reality that the next meal could cost him his life. 

 

At age 8, my son educated his own grandparents on what it’s like to live with food allergies.  “Grandpa,” he said, “I can’t be careful 75 percent of the time.  I need to be perfect 100 percent of the time.”

 

AR101 has the potential to change that.  If only he could have undergone treatment to lessen that incredible emotional burden.  AR101 (Palforzia) has the potential to make childhood easier for food allergy families.

 

Food allergic children and caregivers often struggle with anxiety, depression, and social isolation.  Many children experience bullying at the hands of peers as well as adults. 

 

In desperation, families are sometimes driven to turn to unregulated alternative treatments that leave them vulnerable and at risk.  Allowing for well-studied, standardized, accessible food allergy treatment outlines an established course of action for those looking for help.

 

AR101 (Palforzia) would be life changing for patients.  It offers much-needed hope for food allergic families; relieves mental strain on the patient as well as caregivers; allows room for inevitable error; and it dampens accidental exposure and threat of severe reactions.

 

It could specifically be transformative for patients in underserved communities where food allergy resources are often lacking, where emergency room visits are more common, and where reliance on those outside the food allergy community is necessary. 

 

I’d like to end by saying, at the present time my own child is ineligible for this treatment.  No matter what the outcome is today, he will continue to live under the specter of food allergies.  But professionally, I must advocate for patients who lives can be improved by AR101 (Palforzia) and the possibility of leading a more normal life. 

 

With this treatment, it may be possible for food allergy families to thrive and not merely survive.

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“Spell It Out” PSA – The ABCs of Food Allergies September 10, 2019

Food allergies are a life-threatening condition that know no race, gender or economic status.  However, lack of awareness, education and preparedness are disproportionately affecting underserved families and communities where there is a higher percentage of dangerous reactions as well as higher costs of emergency care.

 

Filmed at a school that serves this population using real students with food allergies, “Spell It Out” is a public service announcement aimed at school children and their caregivers that addresses several key concepts about food allergies that are often misunderstood:

 

1. Food allergies are real.  

Food allergies can be serious and life-threatening – different from a food intolerance which is an uncomfortable digestive condition but not life-threatening.

 

2. Anyone can be allergic to any food at any age.

Food allergies are not simply a passing childhood condition. In fact, recent findings tell us that 1 in every 10 adults have food allergies, too.  And, despite their reputation, peanuts are not the only food to cause a serious reaction – you can be allergic to almost any food.

 

3. Food allergies should be monitored by a doctor.

If you experience symptoms after eating, it’s important to talk to a doctor or nurse.  They can confirm a diagnosis, teach patients how to manage their food allergy, and help them get epinephrine – the only medicine capable of slowing or stopping a life-threatening reaction.

 

“Spell it Out” comes straight from the thoughtful and generous heart of Sammi Mendenhall, an Emmy-nominated producer who admits to being “that person who demanded peanuts on airplanes.” But after seeing the tragic story of Elijah Silvera on the news, she knew she had to learn more and educate others like herself.  She envisioned a project that could help and give a voice to those most at risk.  This project is a result of an amazing collaboration between several powerful advocacy organizations: End Allergies Together, AllergyStrong, Change for Kids, Elijah’s Echo, Natalie Giorgi Sunshine Foundation and Red Sneakers for Oakley.

 

Please visit spellitoutpsa.org for more information.

 

Feel free to share “Spell It Out” with your school – and contact us if you’d like information about an educational school visit for AllergyStrong or one of our outstanding partners.