The number of people in the U.S. with food allergies is skyrocketing.
For the last year, we’ve been working to bring an awareness to the risk that the skyrocketing price of EpiPens creates, and the fact that some families are now priced out of this life saving devices due to its jaw-dropping price tag of about $600.
As recently as the 3rd quarter of 2015, the price of one EpiPen was at $300. But that number is misleading, as the product is sold in a two-pack, so the consumer has to pay $600. In some cases, like this week in Colorado, a parent paid over $700 for the exact same device that just six years ago cost $100. No product changes, no device changes, and the key ingredient inside only costs a few dollars.
So what’s going on?
There is very little competition on the market which only makes matters worse. Last year, Auvi-Q, an alternative device designed by twin brothers who wanted an easy-to-carry option was recalled. The New York Times covered their amazing story in 2013 and the sale of their company to Sanofi. It was short-lived.
According to the FDA, ”As of October 26, 2015, Sanofi has received 26 reports of suspected device malfunctions in the US and Canada. None of these device malfunction reports have been confirmed.”
So the entire product line was recalled because of 26 unconfirmed reports. 26 unconfirmed reports.
Apparently, a very similar device is also used to deliver other medications and no reports have been mentioned or product recalls announced. According to Kaleo Pharma, “on April 3, 2014, the FDA approved EVZIO, the first and only naloxone auto-injector intended to be available for emergency administration by family members or caregivers in cases of known or suspected opioid overdose. The company’s first product approval, Auvi-Q™ (www.Auvi-Q.com) (Allerject™ in Canada), was licensed to Sanofi US which launched the product in early 2013.”
Kaléo, the developer of the Auvi-Q epinephrine auto-injector appears to be planning the return of its “talking” device to market.
The Virginia-based company recently regained the rights to the auto-injector from Sanofi US following a full device recall in the fall of 2015. “We now own the product. We are in the process of figuring out when and how best to bring Auvi-Q back to the market,” Spencer Williamson, president and CEO of Kaléo. According to the Richmond Times “earlier this year, Sanofi US and Kaléo terminated a 2009 agreement that called for Sanofi to manufacture and market the Auvi-Q auto injector.
“A Sanofi representative at the time said the company was able to retrieve some of the 26 devices consumers reported not working correctly but was not able to identify a malfunction in the device.”
The entire product line was recalled because of 26 unconfirmed reports that the company itself was not able to identify.
A competitor can’t come on the market soon enough. Stories of needles breaking and failed EpiPen injections riddle social media conversations and private food allergy groups. Consumers have been priced out by a product that Fast Company called a “faulty design,” and lives are at risk.
The rate of people with peanut allergy in the United States more than quadrupled between 1997 and 2010. A life-threatening food allergic reaction now sends someone to the E.R. once every three minutes in the U.S.
The food industry is getting in on it. Mondelez, formerly known as Kraft, recently acquired Enjoy Life Foods, a popular and well-loved brand in the allergy space, free from many of the top eight allergens and also free from genetically modified ingredients.
It was a $40 million company that was acquired for over $80 million.
What does Mondelez plan to do with the acquisition? Grow it into a billion dollar brand.
What are some other billion dollar brands? Cheerios, Lays, Pepsi, Starbucks….
According to Bloomberg, “In a 2007 purchase of medicines from Merck, drug maker Mylan picked up a decades-old product, the EpiPen auto injector for food allergy and bee-sting emergencies. Management first thought to divest the aging device, which logged only $200 million in revenue. Today, it’s a $1.2 billion-a-year product that clobbers its rivals and provides about 40 percent of Mylan’s operating profits.”
Food allergies are not a niche, it is a growing epidemic that is challenging how we think about our food and how it is made. Genetic factors don’t change this quickly, environmental factors do. Are we allergic to food or to what’s been done to it? A lot of families now pay more for free-from food, because we don’t know the answer to that question.
[su_pullquote align="right"]Researchers report that the costs of food allergies, from medical care to food to pharmaceuticals is $4,184 per child per year, costing our economy $25 billion, including lost productivity.[/su_pullquote]
Researchers reporting in the Journal of the American Medical Association states that the costs of food allergies, from medical care to food to pharmaceuticals is $4,184 per child per year, costing our economy $25 billion, including lost productivity.
On top of that, the costs to families with food allergies is skyrocketing. After insurance company discounts, a package of two EpiPens costs about $415. By comparison, in France, where Meda sells the drug, two EpiPens cost about $85. Back in 2007, when the company was purchased, it cost $57. EpiPens wholesale price rose 400% since 2007 and 32% in the last year alone. EpiPen margins were 55 percent in 2014, up from 9 percent in 2008.
According to Bloomberg, the company’s marketing techniques play on the fears of parents and caregivers. There is no incentive here to find a cure or to stop the condition. Sales are explosive.
To discount this condition in any way is irresponsible, but it is just one of the conditions that is triggering a food awakening around the country.
In the last year, Target, Chipotle, Kroger, even General Mills and Cheerios have responded to this growing demand in the marketplace. Free-from foods are showing up in Dollar Tree stores.
These companies aren’t stupid. They see the escalating rates of diseases in their own employees, they feel the financial impact with their own health care costs, and they hear consumers that are saying they want to eat fewer fake, artificial and genetically engineered ingredients.
While the chemical companies selling these new ingredients say there is no evidence of harm, consumers are saying: there is no evidence since these ingredients were never labeled in the United States.
In other words, if you walked into an allergist’s office and asked if you were allergic to soy that has been in the food supply for thousands of years or if you are allergic to Roundup Ready soy, non-GMO soy treated with Roundup or organic soy, there would be no test to give you that answer. Next time, you are at the allergist’s office, ask which soy they are testing for.
[su_pullquote align="right"]With no labels on GMO ingredients in the US to trace their impact and no test to offer definitive answers, the biotech industry is able to claim that there is not a single documented case of these foods ever causing harm.[/su_pullquote]
The explosion in EpiPen sales is significant. It’s significant to the families that use them and delivers significant revenue to the pharmaceutical company selling them, especially here in the United States. EpiPen actually represents 40% of Mylan’s profits.
A study released in the Journal of the American Medical Association, says yes, living in the United States increases your risk of allergic diseases……“significantly.”
“Living in the US raises risk of allergies,” says the headline.
According to the research, living in the United States for a decade or more may raise the risk of some allergies, reports the Journal of the American Medical Association.
“These data indicate that duration of residence in the United States is a previously unrecognized factor in the epidemiology of atopic disease,” it said.
In other words, the longer you live here, the more likely you are to develop some kind of allergy, asthma, eczema or other related condition.
Food allergies have been skyrocketing in the United States in the last fifteen years. Not only has the CDC reported a 265% increase in the rates of hospitalizations related to food allergic reactions in a ten year period, but the sales of EpiPens, a life-saving medical device for those with food allergies, has also seen record sales growth according to the New York Times.
So what’s going on?
The study aimed to find out. Allergies reported in the survey included asthma, eczema, hay fever, and food allergies.
“Children born outside the United States had significantly lower prevalence of any allergic diseases (20.3%) than those born in the United States (34.5%),” said the study led by Jonathan Silverberg of St. Luke’s-Roosevelt Hospital Center in New York.
Let’s restate that:
Children born in the US have more than a 1 in 3 chance of having allergic diseases like food allergies, asthma or eczema, while kids born in other countries around the world had a “significantly lower prevalence” of 1 in 5.
On top of that, “foreign-born Americans develop increased risk for allergic disease with prolonged residence in the United States,” it said.
In other words, if you move here, your chances of developing any one or more of these allergic diseases increase.
The study went so far as to say that children born outside of the US who moved here showed “significantly” higher odds of developing these diseases.
What’s driving this? Is it really Purel and intense handwashing? And the hygiene hypothesis?
And are we allergic to food? Or what’s been done to it?
Because genetics don’t change that quickly, and the environment does.
This presents a risk not only to these children, but also to our economy, as the financial burden of these conditions and their associated health care costs impact not only families but also our country, our military and our productivity.
So what is triggering this escalating, US allergy epidemic?
According to Reuters report on the study and Dr. Ruchi Gupta, who studies allergies at the Northwestern University Feinberg School of Medicine in Chicago but wasn’t involved in the new research, “This is definitely something we see clinically and we’re trying to better understand, what is it in our environment that’s increasing the risk of allergic disease?” said
“Food allergies have increased tremendously,” she told Reuters Health. “We do see people who come from other countries don’t tend to have it.”
According to Science Daily:
Genetically engineered crops are created by inserting a protein from a different organism into the original crop’s genome. This is usually done to create a plant that is more resistant to insects or diseases.
The Food and Agriculture Organization within the World Health Organization has a structured approach to determining whether genetically engineered foods cause allergies, according to Venu Gangur, MSU assistant professor of food science and human nutrition, who also is a faculty member in the National Food Safety and Toxicology Center. “But it has a major flaw. A critical question in that process asks, ‘Does the protein cause an allergic reaction in animals?’ The problem is that there has been no good animal model available to test this.”
It’s food for thought.
The cost of food allergies is burdening more than just the families dealing with them, it’s burdening our schools, our health care system and our economy. It has become a billion dollar business in less than a decade for the company making EpiPens, so they have no reason to stop it.
Until there’s a cure, there’s EpiPen, but there used to be TwinJect and Auvi-Q, too. They are both gone, and consumers are left with a product on the market that was first originally used by the military, whose patent somehow hasn’t expired and whose design has invited countless criticism from both patients and practitioners for its broken needles. It leaves a lot to be desired and a lot of Americans asking the one question: Why 6 price increases in 6 years for a now $600 device?
It reminds us here of another company and their infamous tagline: Ask Why.
That company was Enron. And it’s time for both consumers and members of Congress to “ask why” we are seeing this outrageous increase in the price of EpiPens.
Lives are at risk.
On October 1, 2013, a 14 year old boy had an allergic reaction that would take his life. On the one year anniversary of his death, I sat down with his mother. Today would have been his 17th birthday.
She reached out again last month with a very urgent email: “Robyn, the price of Epipens are skyrocketing. Families can’t afford them. Can you help me get the word out?”
I was stunned. Here, she had suffered the unimaginable, the loss of her teenage son, and she was asking to help others. Where does a love like that come from?
The heart of a mother. It stopped me in my tracks, because countless parents have reached out over the years. I’ve sat with those who have lost their children to a food allergic reaction. They don’t stop loving that child just because he or she is gone. They put that love into action.
And as I began sharing this, focusing on the meteoric increase in the price of Epipens, up almost 500% since 2009, other parents began sharing their stories, too.
So today, on what would have been Gio’s 17th birthday, we are sharing the story from his amazing mother again.
A mother does not stop loving her child because he is gone. If Georgina is any indication, she loves him more.
Please meet my beautiful friend, Georgina. Her story is below:
When Giovanni was around 18 months old, I made chicken with a peanut sauce. After one bite, Giovanni began to get hives, his eyes swelled…. I called our pediatrician, who told me to give Giovanni a dose of antihistamine and bring him in. Once there, our pediatrician said Giovanni must be allergic to peanuts and advised me to keep an eye on him and to give him antihistamine as directed. His symptoms did not get any worse that day, and we left with a referral to an allergist.
After going to the allergist, Giovanni was diagnosed with allergy to peanuts and other things. I remember the nurse giving me a prescription for antihistamines and an epinephrine auto-injector and showing me how to use it in case of an emergency. I wasn’t given a food allergy management plan. I don’t remember there being any sense of this as a life-or-death situation – just a diagnosis, prescriptions, and the recommendation that we follow up with our pediatrician.
So from then on, that is what I did. Giovanni’s pediatrician was his “go to” doctor for everything. When we asked about seeing a specialist, our pediatrician stated that he would treat Giovanni first.
Giovanni had a few allergic reactions to peanuts. We never thought these reactions were severe. He would usually vomit, get some hives, and have a bit of scratchy or tingly throat. After a dose of antihistamine, symptoms seemed to calm down and go away on their own. Thinking back, these reactions would be considered anaphylaxis, and were severe.
I followed up with the pediatrician, who said I should give Giovanni antihistamine since his reactions were mild, and he should be okay. We were never told that epinephrine must be used for certain symptoms, only that it could be used if we really thought he needed it. But, since he never had a bad reaction, I didn’t think he needed it. That was the extent of our anaphylaxis management planning.
A Severe Reaction
On October 1, 2013, Giovanni and I were settling in early, happy that homework was finally done early, dinner and chores were done, and we were going to be able to enjoy movie night together – just him and me – for the first time in a while since school had started. Giovanni had just started at Holy Trinity High School, so homework, studying, and sports left little time for relaxing and leisure. We popped the movie in and had our snacks ready. One was a snack mix of mini cookies, pretzels, almonds, and M&M’s. I usually always bypass the full food label and go right to the bottom of the ingredients where they usually have an allergy disclaimer. I had read the back of the bag, and all I saw was “MAY CONTAIN TREE NUTS.” Good, I thought, he is not allergic to tree nuts.
I gave Giovanni a few pieces of snack mix from the bag, but within seconds he was saying, “Oh no, there are peanuts in here!” I said he was wrong and read the ingredients again. Although there was no “peanut” disclaimer, it did actually have peanuts as a main ingredient. I just didn’t read enough! I don’t know how in the world I didn’t see it.
I immediately gave Giovanni a regular dose of antihistamine and said we should go to Premier Care, the after-hours clinic, just to be safe. Then I gave him a second dose of antihistamine just as back up. Giovanni was only feeling a little scratchiness in his throat and was giving me a hard time about getting dressed to go to clinic.
At this point, I should have called 9-1-1.
I said let’s go now, just to be safe. The epinephrine auto-injector was on the table right next to my purse, and Giovanni asked if he should use it. I said I didn’t think we needed to, that we should just get to the doctor. I threw all the meds into my bag and left. On the way out, Giovanni asked if he should vomit, since that is usually what happened in the past. I said if you need to then try, but he couldn’t.
Premier Care is about a seven-minute car ride away. Giovanni was still talking on the drive there. He had his inhaler with him and used it a few times. I kept telling him not be nervous, that he was going to be okay. We got to the office, and it had JUST closed. No one answered the door. Giovanni began to panic. We jumped back in the car and immediately started to look for the epinephrine auto-injector. We couldn’t find it.
At this point, he was still okay. He was still talking, just more scared now. I still was thinking we were okay. Now I had to drive to the emergency room, which was about another seven minutes away. All I could do was focus on getting there without crashing, I was beeping my horn and had my hazard lights on, taking every red light I could safely run and reassuring him every minute that he was going to be okay, that we were almost there, to just hold on another minute.
We were around the corner from the hospital when Giovanni must have felt something serious, and he said, “I can’t mom, I don’t want to die.” I was yelling, “No! No! That’s not going to happen. We’re here. Just hold on. I’m there in two seconds.” He didn’t respond.
I turned down the street to the emergency room and realized he was quiet. I grabbed his hand and said we’re here, but I realized he was cold. I looked at him, and he was blue. I started screaming and beeping as I drove to the emergency room entrance. There were people outside and I was screaming, “Help, my son has peanut allergy. He passed out. I need to get him inside!” They all ran over, and I remember about five of us struggling to get him out of the car. At the same time, emergency room staff came running out with a wheelchair, and we threw him in it. I was just screaming, “Help him, please! He is having an anaphylactic reaction to peanuts.”
Staff were running through hallway, yelling “We need a table now!” as I ran behind screaming “Please, help him!” That was the longest hallway ever. Then these nurses stopped me and took me into a small room while they took Giovanni away, and I had to wait and wait and wait. I had called my husband when we were leaving the house and told him what was happening and that Giovanni was okay. Now I had to call and tell him to get to the ER right away.
It was nearly an hour later when a doctor came out to brief us. She told me how they worked on Giovanni for quite a while, that his heart had stopped and that he had been without oxygen for about 3 minutes, but that they were able to save him. They told me he was on a respirator. I was finally able to see him. He was unconscious and needed to be transported to a pediatric ICU.
Giovanni was in a medically induced coma for several days in hopes of alleviating the trauma caused to his brain from lack of oxygen, but he got worse when they tried to bring him out of the coma. Doctors re-induced him into the coma in hopes that he would recover. But after three weeks of exhausting all measures to try to save him – after many hopes and prayers – Giovanni’s body just couldn’t sustain the injury to his brain, and he passed away on October 18.
I am grateful that I was able to hold my little boy in his bed, along with his dad and his sister, and was surrounded by every one of his closest family members, every one of them holding hands, holding each other up, while he crossed over to finally be in peace.
His physician was our pediatrician for more than 20 years. He didn’t take his allergies serious because he wasn’t educated enough about them. When I called him from the emergency room to tell him we are in the ER and why, he just said that there wasn’t anything to do, that the hospital doctors would be the one taking care of him.
The next time I heard from him was 10 minutes after Giovanni had passed away. My cousin had answered the phone, he was calling to see how he was. And didn’t really have anything to say. He never called, did not send a card, did not come to his funeral nothing. I still can’t believe it.
The night of his accident we were to be picked up from other hospital he needed to be transferred to hospital With PICU unit, the head nurse from this other hospital was (unbeknownst at the time) sent to be his angel, our angel. She told us she had just gotten back from an all day conference on food allergies and EpiPen importance. I have kept in contact with her and just the other day called on her to help me figure out how I can reach out to the entire medical field, re: American pediatric association. I am trying to figure out the best way to reach them to express the importance of global change of education to all physicians, nurses, ems, to follow one basic protocol when administering life saving information about food allergies.
When I asked Giovanni’s mom to tell me about her son, the sports he played and his friends, this is what she shared:
He was such a beautiful boy. So loving, caring, helpful. Loved life. He is so very much missed by all. His sister is all alone without him. His friends loved him so much. They still contact me from time to time to see how we are.
The one thing that is consistent when they speak of him is how beautiful his smile was, how he was so happy, always goofing off, making everyone laugh; he knew if you were having a bad day he would ask if you were ok and find a way to make you feel better.
Giovanni had just started high school at a private school, it was a big change for him but he loved it. EVERY single student in that school came to his wake/funeral. They all told us what an amazing kid he was, so many said even though they didn’t get a chance to actually speak to him they remember his infectious smile and that he was always making someone laugh.
Giovanni was an amazing athlete. Since the age of 5 he was playing baseball, soccer, football, basketball. His first love was football but a few years ago decided that baseball would be his career. He was known everywhere he went. Everyone wanted him on his or her team.
Right before the accident he had just gotten back from a travel team tournament that weekend. He was going to be a major league player no doubt. He was an honor student. A best friend, his father’s pride and joy, he was my whole life. He was my Protector, my son, My friend, my SOULMATE!
Communities from so many Towns have come together to remember Giovanni. In the town where dad is from, Our Lady of Peace school, one mom who has a food allergic child and is on the board had their food allergy policy revamped and dedicated to Giovanni. When Giovanni was in school at all times his friends/teachers all were very cautious and mindful of his allergies. His two very best friends were also allergic to peanuts /nuts and some other things as well so it was always a comfort knowing that he would be safe with them.
There was always a smile on his face. He was running from the time he woke up to the time he went to sleep. And even when he was sleeping he was still a restless sleeper. He was a star athlete. He was a best friend. He was the best brother. He was my little boy, my little man. He took care of me, and I took care of him. He was my friend, my partner. He was the reason I did EVERYTHING I did. He was his dad’s pride and joy. His dad is lost without him. He was an honor student. He knew to be helpful, to be of service, to be respectful. He knew how to seize the day and run with it.
Giovanni’s loss is felt not just here in our family, in our community, but all over the country. Giovanni’s loss is awful, it is heart wrenching, it doesn’t make sense. If it has taught us one thing, it is that we know we don’t want anyone to ever have to feel the pain that we feel.
What Do You Want People to Know?
We want to help educate and advocate for all families living with food allergies. We want everyone to know that food allergies are serious. Some people think it’s not that big of a deal, that food allergy parents tend to overreact, and for the simple and lucky reason it hasn’t yet affected them.
“How many more lives need to be lost to prove it is a big deal?”
Food allergies can mean life or death. In the past two months, it has become apparent just how true that statement is. Two more little lives have been taken in our community due to a peanut allergy. More people need to be informed about the dangers of food allergy, including healthcare professionals and parents. If you have a food allergic child, seek consultation with a board certified allergist who has expertise in food allergy. Allergist evaluation and periodic routine follow up are recommended steps in the NIH food allergy guidelines for caring for food allergic children. It is important to do your own research and be your own advocate. Find the very best doctor you can, and even if he’s a little farther away, it may be worth it to go those extra miles. If you advocate for your child and do the research, it is possible that you may be able to help your doctor form the best treatment plan possible for your child. If you are not happy with the treatment or feedback, then find a new doctor. Do not settle! If you reach a point where you are not comfortable with just your primary care physician managing your child’s food allergy, then you have to have a frank discussion with this provider about your desire to involve a food allergy expert in the care.
Know the Signs and Symptoms
The most important information we want everyone to know is that when there are signs or symptoms of anaphylaxis, administer your epinephrine auto-injector (such as an Auvi-Q or Epi-Pen). This is the first line of treatment for anaphylaxis! Always have your epinephrine auto-injectors available. It is wise to have two doses available because some people may need a second dose. Do not hesitate to use this when it is needed! It can save a life. Epinephrine use has virtually no downsides or bad side effects beyond increasing the heart rate and blood pressure, and possibly causing some temporary bruising and pain where the device was injected. Most importantly, make sure you have a written anaphylaxis management plan provided by whoever is managing your child’s food allergy. This must be reviewed until you know it like the back of your hand, and you are comfortable with the steps. The physician creating this plan must be able to clearly explain to you what symptoms require antihistamine, and what other ones can only be treated with epinephrine. It is your responsibility to master this plan, and be ready to act should the need arise.
If you should have to treat your child with epinephrine, call 9-1-1! Call your local ambulance service and tell them that a child is having an allergic reaction and may need more epinephrine. (An ambulance should be called not because epinephrine is dangerous but because the allergic reaction could be severe, needed to be treated with epinephrine, and may require more treatment). Even if you are unsure if your child needs the epinephrine, don’t hesitate. Don’t let fear take over. It won’t harm your child if it turns out not to be needed, but it will harm your child if you don’t use it, and it was needed!
You have some incredible goals. Will you share them?
I have many goals to conquer but educating people about this is at the top of my list And I will be heard if it’s the last thing that I do. Thank you for listening. ❤
“May contain” labels on our food packaging are voluntary. The Food Allergen Labeling and Consumer Protection Act (FALCPA) was passed by Congress to ensure that there would be clearer labeling of food for the millions of people with food allergies. As of January 01, 2006, all food products regulated by the FDA must be labeled in a specific way to identify the eight major food allergens, but there are exemptions and loopholes.
It is painfully clear that not enough parents are aware of these exemptions and voluntary labels. To learn more, please click here.
Read the ingredient list and label all the way through. Do not rely on the “May Contain….” or “Contains….” statements at the bottom of the ingredient list. It is a voluntary statement and not required under the food allergy labeling law.
To learn more about the sign and symptoms of food allergies, please click here.
To learn more about the Food Allergy Labeling and Protection Act and what is voluntary and how to protect your loved ones, please click here.
To read Giovanni’s full story, please click here.
To help prevent another food allergy death, please share this.
To sign the petition urging an investigation into the skyrocketing price of Epipens that are putting lives at risk, please click here
Written By Daniella Knell for SunButter
Sending your child with food allergies off to school can be overwhelming. Trusting others to keep your kid safe is probably your #1 priority! For me, educating myself and others was the only way I could create a safer learning environment for both my children and their caregivers.
As food allergy parents, we constantly wonder, “What if something happens?” In my opinion, a more productive question is, “Does the person taking care of my child know what to do if and when something happens?”
It is all about education.
That’s the key to making sure that your answer to the above question is, “Yes, my child is in good hands.” When people don’t understand food allergies, they don’t know how to protect people who have them. The first step is educating—educating yourself, educating your child, and educating others. This guide will help you educate those around you most effectively.
To effectively educate others, you will need to partner with your school. Know that your attitude sets the tone. This will make or break how your school will or won’t work with you. If you go in with a steamroller approach with demands, you’re likely to meet resistance. Have you ever heard the saying, “you catch more flies with honey than vinegar?” Approach your school with a positive, understanding attitude and you are more likely to see positive, understanding results!
Find Educational Resources YOU Trust. You can direct others to these resources and use them to bolster your position. They will also help you remember that you aren’t alone! Here are links to some of my favorites.
- FAACT – Food Allergy & Anaphylaxis Connection Team FAACT is currently my favorite because I find them the easiest to navigate and LOVE their primary focus on education. TheirSchool Curricula Program offers ready to share presentations for the classrooms, beginning with K thru 3.
- FARE – Food Allergy Research & Education FARE’s ‘Be A Pal: Protect a Life’ program spotlights Alexander the Elephant and his circle of food allergy friends. I still use portions of this program when presenting to preschool and early elementary school children.
- KFA – Kids with Food Allergies KFA hasan entirepage dedicated to keeping kids with food allergies safe at schools, including free guides and handouts!
Find a Food Allergy Action Plan (FAAP) YOU Like. Your allergist fills out this form outlining actions to be taken by a caregiver in the instance your child has an allergic reaction while in their care. Here is one place you can start: Children’s Physician Network Food Allergy Action Plan
4. Management Plan
Figure out WHAT KIND of Management Plan Your Child Will Need. IHP? IEP? Or 504? If your child has life threatening food allergies, they may be considered as a qualified student with disabilities under the Americans with Disability Act (ACT) Amendments Act of 2008.Section 504 of the Rehabilitation ACT of 1973 requires that the school district to provide a “free and appropriate education” (FAPE). Then again, this will depend on whether they are attending a school receiving ANY federal funding, and laws can vary from state to state. DON’T be overwhelmed! Your allergist can help you out!
5. Gather Resources
Find some books and videos you like. My favorites include: the ENTIRE No Biggie Bunchseries, The Bugabees, The Princess and the Peanut, and the Alexander the Elephant Who Couldn’t Eat Peanuts – Gets a Babysitter
6. Create a School Food Allergy Binder
Put together useful Resources and have a copy available to share with the nurse and teacher. I would also include some kind of handy labels you can use to mark ‘SAFE’ snacks or a snack box for your child. Any kind of label will work. Here’s an example of the ones I personally designed: S.A.F.E. Food Allergy Labels.
Find samples of food allergy flyers on line which you like. Just type in ‘peanut free’, ‘allergy free’ pics in your favorite search engine and you will find ALL kinds of different flyers you can use. Have these different options available to share with school personnel.
8. Meet with People
Meet with the Principal. Meet with school nurse. Meet with your child’s teacher. This is your opportunity to meet with everyone and explain your concerns. Let the individuals know you’re wanting to partner with the school to create a SAFE and enjoyable learning environment for everyone. It will be at this time you will find out what previous experiences these individuals have had in managing food allergies. You may be pleasantly surprised. You may be disappointed. Most importantly, you will be prepared to decide what direction you need to go in moving forward with your school.
9. Have Your Child Meet with ALL of the People They Will Meet
This is the opportunity to show your child all the individuals around them whom are working to keep them SAFE. Don’t underestimate the NEED for your child to need to feel this comfort. They don’t WANT to feel singled out, but they also need to feel SAFE.
10. Get Involved!
Set up a time to go in and read stories, show a video, whatever it is you want to do to make learning about food allergies FUN! In the beginning it may be nerve racking.
Daniella Knell, owner of Smart Allergy~Friendly Education, is mother to two children with food allergies. You can find her displaying her public speaking skills in local schools and hospitals, blogging, and presenting allergy~friendly smoothie videos. For allergy~friendly ideas for your household, visit Daniella’s website, Facebook, LinkedIn and Twitter.
Kayleigh Peters is a 17 year old who decided to share a few thoughts for parents of little ones with food allergies in a Facebook group. Her post went viral in the food allergy community and was shared immediately. It is honest, heartfelt and so true, and it shines a light on food allergies and what it teaches us.
Meet Kayleigh, one amazing high school girl:
“Hi, I’m a 17 year old who has lived with a severe (as in contact and airborne reactive) allergy to peanuts since I was born.
Later I added soy and tree nut, and I am now peanut, treenut, soy, lentils, beans, peas, and wheat allergic.
I know that some of parents on this page are just now becoming introduced into the severe allergy world, and I want to offer some reassurance from the child perspective. I went to a public elementary school. I was given a “peanut-free table” at lunch even though on Thursdays the cafeteria served PB&J sandwiches. I ended up in the Nurses office every Thursday. I wasn’t able to play on the playground because of the contact, but still went to class with all the other children.
Throughout my elementary school years I became very close with the school nurse, but I never used my Epi at school even if I know I probably should have. The first time I used it I was 8 years old and I was at a birthday party. I ate peanut butter cup ice cream and within 5 minutes I couldn’t breathe. My parents weren’t there and the friends parents had to give me the Epi and call the ambulance.
This was probably the most terrifying moment for my parents when they got the call. But, I want to tell all of the parents out there that I turned out okay. I was raised in the time before the severity of allergies was understood, but I was still able to live my life.
Severe allergies are scary. I know this as well as anyone. I also have severe asthma. I’ve been in and out of the hospital all my life.
Yes, it’s harder for me to go out to eat or go on the same adventures that the other kids my age go one, but I still live my life.
Don’t let allergies hold you back or hold your child back. Everyone has obstacles in their lives.
Those of us with allergies have to learn til read labels, advocate for ourselves, inform others about who we are, we learn to scan crowds for candy bars being eaten by others, we learn to wipe down seats and tables, we learn to answer weird questions like “what happens if I eat it then lick you?”, we learn how nice the EMSA people can be.
Everything is a learning experience. But we can do it. Do not feel that you have to seclude yourself from the world because of you or your child’s allergies. Yes, this world is scarier when you have allergies. Yes, there are many many people out there who do not understand what we have to go through. But it is our job to not give up. We have to educate those around us. We have to keep living.
I just felt that sometimes that sort of thing needs to be said.
-From a girl who has lived with severe allergies and asthma all her life and has still gone to France for 2 weeks without her parents, dozens of road trips, public schools, airplanes, restaurants, and is going to Bangladesh in a month.
It’s going to be okay. It’s a scary world, but you are all strong. Your child will learn so much. They will be strong, independent, self-advocators.
You can do it.”
One of the biggest pet peeves of American parents is that a lot of food companies have already removed artificial dyes and colors from the products that they sell overseas. The maker of M&Ms, Mars, has always been one of them. Back in 2008, when I was writing my book, I shared this comment when Mars UK decided to remove artificial dyes from their M&Ms. The date was 2006.
“We know that artificial colours are of concern to consumers, which is why, in 2006, Mars began a programme to remove them from our products. . . in November 2007, Starburst Chews became free from all artificial colours. . . . in December 2007, Skittles were made free from all the artificial colours highlighted in a landmark study by Southampton University. . . We have already removed four colours mentioned in the Southampton study from Peanut and Choco M&M’s, and are in the process of removing the final one so they too will be free from these artificials during 2008.”—Mars UK
Mars, Inc.’s finally took action in the U.S. this week, ten years later, announcing that it will get synthetic food dyes out of its entire human food portfolio is a huge advance for parents and children and should serve as a powerful incentive for the rest of the food industry to follow suit.
The Center for Science in the Public Interest has been a leading voice on this for a decade. Their report, “Rainbow of Risks” is one that many of us have leaned on as authors, parents and advocates. They wrote, “We appreciate the fact that Mars listened to our concerns and to the concerns of its customers and that it is exercising this kind of responsible leadership.
The Food and Drug Administration should level the playing field for the whole industry by banning Yellow 5, Red 40, and other synthetic dyes used in food. There is simply too much evidence demonstrating that these artificial dyes trigger inattention, hyperactivity, and other behavioral reactions in children. The use of these neurotoxic chemicals to provide a purely cosmetic function in foods, particularly foods designed to appeal to children, must stop.
Mars’ action is not only a big victory for parents; it is also a big victory by parents. We’ve been pleased to work with moms and dads from around the country who have written to the FDA, contacted food companies, and signed petitions like the one focused on Mars that Renee Shutters started on Change.org. It shows that when consumers make their voices heard, food companies will sometimes actually listen.”
Last year, I was contacted by members of the team from Mars, and I shared my candid thoughts. If these food companies want to remain relevant in the 21st century and in this new food economy, they can no longer deny the will of their consumers who want food that is free-from all of these artificial ingredients.
It is time to #dumpthejunk. Thank you, Mars, for listening.