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By: Amy Martin | AFAA Editorial Contributor
Every year, summer break comes to an end and food allergy parents get anxious. Along with packing school supplies, we dutifully assemble emergency kits with antihistamines and epinephrine. In additio
Every year, summer break comes to an end and food allergy parents get anxious. Along with packing school supplies, we dutifully assemble emergency kits with antihistamines and epinephrine. In addition to the set (or two) we send off to school, we keep another set at home or for after school child care. Depending on insurance, these double packs could cost nothing…or up to $300 each.

Because of cost, many families are forced to make the choice to carry beyond the yearly expiration or to even go without necessary life-saving medication. In some cases, parents will even divide up a set of injectors despite the fact that the The American College of Allergy, Asthma and Immunology recommendation to always carry two in case one fails or a secondary reaction occurs.

For us, in addition to epinephrine, my son also needs a preventative inhaler which our insurance only covers under our incredibly high deductible. Nothing has ever punched me in the gut harder than when I realized I couldn’t afford my son’s medically necessary medications. Obviously, he could not go without, but what would our family go without in order to pay for them? With three epinephrine sets expiring at the same time and this new preventative inhaler prescription,  I had to find a way to minimize the cost. As medicine and insurance costs rise and coverage declines, I highly doubt we are alone in our dilemma, so here are some tips that worked for our family that hopefully help others.

1. Coupons

The simplest and most popular way to save is to use coupons found on the pharmaceutical company’s website or even given to you by your allergist. Both Epi-Pen and Auvi-Q have $0 copay cards which cover up to a maximum of $100. For those whose copays are under $100, the injectors can be possibly be free. Check your coverage to determine how many injector sets are covered.

2. Income-based plans through drug manufacturer websites 

Both Auvi-Q and Epipen have income-based discount programs that could potentially cover epinephrine costs for an entire year. Each company has different guidelines, so watch carefully. If you still struggle but don’t meet all the requirements, try calling. Sometimes customer service can assist you in your application and even let you know if an appeal filed after a denial would be accepted.

https://www.auvi-q.com/prescription-coverage 

https://www.epipen.com/en/resources/paying-for-epipen

3.   Samples from your doctor’s office

Doctors are wooed by pharmaceutical companies with a supply of samples to hand out to patients as they see fit. I personally have never asked or been offered epinephrine, but we have received asthma inhaler samples that have saved us considerable amounts of money. 

*All advice is based on personal experience. Your experience may be different based on insurance coverage and income. 

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Amy Martin is a gypsy at heart, with the soul of an entrepreneur and the real, everyday life of a wife, mom, realtor, blogger and food allergy conquistador. She guest blogs and volunteers for AFAA. You can check our her personal blog at www.barefootnpearls.com or find her on Instagram as BarefootinPearls.

 
 
By: | AFAA CEO & Editorial Contributor
Lianne Mandelbaum is a mother and advocate in the food allergy community. Lianne runs the site, "No Nut Traveler", and has subesquently started a petition and movement that led to the introduction of S. 1972 that will essentially, if passed, require: stock epinephrine; require airline crew members be trained on how to administer stock epinephrine; and require guideline changes to food allergy policy for airlines.
Lianne Mandelbaum is a mother and advocate in the food allergy community. Lianne runs the site, "No Nut Traveler", and has subesquently started a petition and movement that led to the introduction of S. 1972 that will essentially, if passed, require: stock epinephrine; require airline crew members be trained on how to administer stock epinephrine; and require guideline changes to food allergy policy for airlines. On Monday, August 10th, 2015 FARE sent out an email to support groups nationwide calling us to action as a community to support Ms. Mandelbaums efforts. You can see the email below, as well as the downloadable template to fill-out and send to your state Senator. 

For those in Arizona it is as follows: 

Flake, Jeff - (R - AZ)Class I413 Russell Senate Office Building Washington DC 20510(202) 224-4521Contact: www.flake.senate.gov/public/index.cfm/contact-jeff

McCain, John - (R - AZ)Class III218 Russell Senate Office Building Washington DC 20510(202) 224-2235Contact: www.mccain.senate.gov/public/index.cfm/contact-form

Call to Action from FARE:

Background:  FARE has been working with Senators and Representatives to encourage improved airline policies with respect to food allergies.  We are pleased to report that Senators Mark Kirk (R-IL) and Senator Jeanne Shaheen (D-NH), along with Senator Mark Warner (D-VA) have introduced S. 1972, which includes the following provisions:

-a requirement that airlines stock epinephrine auto-injectors (EAIs) in all aircraft within six months;

- an interim requirement that the 1:1,000 epinephrine vials currently included in airline emergency kits be labeled for the treatment of anaphylaxis;

- a requirement that airline crew members be trained on how to administer EAIs; and

- a report to Congress by the General Accounting Office on current airline policies regarding issues including the extent to which airline food allergy policies are transparent and accessible,  the steps that could be taken to develop a model policy, and the incidence of inflight allergic reactions and administration of epinephrine.

Requested Action:  FARE is asking all support groups to send letters to their Senators asking that they co-sponsor S. 1972  Attached is a model letter. PLEASE PARAPHRASE THIS LETTER SO THAT SENATORS DO NOT RECEIVE MULTIPLE COPIES OF IDENTICAL LETTERS.  Please prepare two letters (one to each of your Senators) on your group’s letterhead (or with the name of the group clearly visible at the top and contact information at the bottom) along with information that supports who your group is, the geography you serve, etc..  In the body of each letter, be sure to insert the names of each Senator and the name of your support group (in the blank in the first line).  

If you are uncertain who your Senators are, please go to:

http://www.senate.gov/general/contact_information/senators_cfm.cfm?OrderBy=state&Sort=ASC

The mail to the Capitol is extremely slow.  In order for your Senators to receive your letters promptly, please email them to me and I will share with FARE’s Capitol Hill representative:

sriccio@foodallergy.org

We will bring your letter to the attention of each Senator’s office.  
If you have questions about the bill or this request, please do not hesitate to contact me.

As with the School Access to Emergency Epinephrine bill enacted in 2013, FARE’s chances of success in advocating for this legislation requires active involvement of all support groups.  Thanks for working with FARE in our efforts to make airline travel safer for individuals with food allergies.

We also acknowledge the important support of our coalition partners at AANMA, AAFA, and The No Nut Traveler, who have all also endorsed this legislation.  

Thank you all,

Scott
Scott Riccio
Senior Vice President, Education & Advocacy
Food Allergy Research & Education (FARE)
7925 Jones Branch Drive, Suite 1100
McLean, VA 22102
Direct: 703-563-3081 Cell: 202-341-5177 Fax: 703-691-2713
sriccio@foodallergy.org
www.foodallergy.org

FARE’S mission is to improve the quality of life and the health of individuals with food allergies and to provide them hope through the promise of new treatments.  Learn more at www.foodallergy.org.


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By: Amy Martin | AFAA Editorial Contributor
 "Adventure" became the word we used over and over to make it all seem less scary. Mostly for me. The kids were handling it better than the adults.
"We're off!" I told the kids as we pulled out of the driveway, a small trailer packed with all our necessities for the next six months in tow. “Everything is Awesome!” blasted through my speakers. I had been easily convinced by a fellow allergy mom in one of the OIT Facebook groups that if there were ever a time to move to Utah for treatments, it was now. My husband and I discussed it and agreed all the pieces were in place.  We were already selling our house to move closer into town, but had not yet bought another and my son was still young, just about to enter the first grade. He was totally on board for treatments and I knew as he got older it would be harder to convince him to both eat peanuts and to leave his friends.  

All the arrangements had been made and an apartment was waiting for us in Utah as well as our first appointment with Dr. Jones. I planned to homeschool while there so as not to endure the sicknesses involved with starting a new school. Excessive illnesses would prevent us from maintaining regular updoses. My husband would come visit as often as possible, but someone needed to stay home and keep our business going. "Adventure" became the word we used over and over to make it all seem less scary. Mostly for me. The kids were handling it better than the adults.  

Our appointments would be weekly, only to increase his peanut dose. First, he would be getting minuscule amounts of peanut protein in a liquid solution, then move on to peanut flour and eventually, actual peanuts. I would be administering the doses to him morning and evening.  There were rules to follow about proper rest afterward, when to go to sleep, making sure he had food in his stomach and not spacing the doses too far apart or too close together.  I knew these rules coupled with being a temporary single parent with two kids and a dog in a one-bedroom apartment would be a lot.

I also knew if we stayed in Arizona it could be years before a doctor there would offer OIT. I would spend all that time worried about accidental peanut exposures. We would be too stressed about a mid-air reaction to fly and visit family on the east coast. We would not be attending any baseball games. More than anything, I wanted to relieve the stress and worry of touching something with peanut protein on it for my six year old. I never wanted to hear, "Am I going to die?" from him again because he was reacting.

To us, this six months would be but a blip in the grand scheme of things, yet change our entire lives forever. 

 
 
By: Amy Martin | AFAA Editorial Contributor
That day was the catalyst for all the days and mostly nights of research I would do, searching for an answer.
            I must have eaten too much, my stomach hurts, he said. My eyes darted to his plate and instantly I felt sick, too. His fruit was untouched. All that had been eaten was a couple bites of his sandwich.  Our instructions were clear and the same as always, One grilled cheese, cut in half with a side of fruit. He has a severe peanut allergy.  Same as always, we were assured it would be fine.  Clearly, it was not.  I gave my husband the look, then took my son to the hand washing station outside where we washed his face, hands and tongue as well as we could. 

            I made a quick stop at the kitchen to inform them we were having a reaction and they assured me it was impossible as they took proper precautions. I sat down to the table and realized the look meant eat all my fries in my absence to my husband.  Annoyed but preoccupied, I noted that my sons mouth had begun to bleed. It was swelling on the inside. A manager came by to again tell me they prepared his food safely (a conversation with her later revealed there were not peanuts near his food, only peanut butter. PEANUT BUTTER!!!) and to get my contact info for follow up later. 

            Our friends at dinner with us pointed out the hives popping up on my sons mouth. I told my husband that maybe I should inject him with his Epipen, which we keep with us at all times. We hesitated. (Not a mistake I would make again) Instead, we ran out the door and drove across the street to urgent care where they administered my sons first life-saving dose of epinephrine.

            As I contemplated if it was legal to wrap him in bubble wrap and lock him in his room rather than send him to kindergarten, as he was supposed to begin the following week, I decided that I could never trust anyone to prepare his food safely and therefore, avoidance was no longer the only viable option for us.

            As awful as that day was for us, as much as I loathe that restaurant and their carelessness that could have cost me my five-year-olds life, that day had to happen.  That day was the catalyst for all the days and mostly nights of research I would do, searching for an answer. I could not play defense anymore. It wasnt working. In order to stop living in fear of the next time, we needed to meet this food allergy head on.

 
 
By: Lilliana DeSantiago Cardenas | AFAA School Epinephrine Advocate & Editorial Contributor
With the passage of SB 1421 allowing school districts to provide stock general use epinephrine for emergencies it is important that we understand what this means.
Exciting times are here; our children are off to a new school year.  Unfortunately these are also times of anxiety and fear for many families. With the passage of SB1421 allowing school districts to provide stock general use epinephrine for emergencies it is important that we understand what this means.  Also what we can do while schools in AZ become more competent on Food Allergies, Anaphylaxis and how to help our children either with their own epinephrine or with stock.

  1. Most schools will not have stock epinephrine available this year.  By law they are only required to stock if funds have been allocated via the annual budget.  Schools may opt to purchase these through their own funds.  Check with your schools.
  2. Stock epinephrine should never take the place of your child’s prescribed epinephrine.  Bring your child’s prescribed medication to school, make sure it is not expired, label it clearly and provide clear and detailed information to all classroom teachers, aides, and any other adults that will work with your child during the school day on how and when to use it. 
  3. Be prepared and communicate, 504 Plans are essential if your child has food allergies that lead to anaphylaxis. They not only provide information and guidance on how and when to help your child, but it is a legal and binding document that is developed in agreement with school administration, teachers, and parents.   504 Plans also provide you the leverage you need to ensure that necessary accommodations are made in regards to food, medication access, and class room environment.  Also if there are violations to the 504 Plan it is much easier to take legal action and hold people accountable.  Some schools may challenge your child’s ability to carry their epinephrine if there is not a 504 Plan and information outlining your child’s condition and medication requirements.  Make sure you check in with your school administrator and nurse about this.
  4. Share training resources on how to administer epinephrine to all adults who work with your child: http://www.arizonafoodallergy.org/administering-epinephrine.html The thought of injecting epinephrine is scary for most people.  Ease concerns through education and practice with demos.
  5. Be a team! Work with the school as much as possible and understand that they are afraid too. Schools are set up to be educational institutions not healthcare providers so this is totally out of their comfort zone.  They don’t want to put your child in danger.  The more you work with them in a patient and respectful manner, the more responsive they will be.  They need to be educated on the issue, treatment, risks, and emergency management.  The more they understand that the danger is in the lack of responding vs giving someone epinephrine the more they will become comfortable and willing to help.
My experience working with schools for over 8 years on asthma, food allergies, and diabetes is that they want to help, but they don’t really know how.  They are scared and don’t want to get into legal troubles. They don’t want to hurt your child and they sure don’t want a tragedy on their hands.  Education and awareness is key and the way to achieve this is through collaborative partnership between parents, students and school.   

 
 
By: Melissa Enos | AFAA Education Specialist & Editorial Contributor
The more you make this a two-way street, the more complete your child's circle of support will be.
It's back to school time again! If you have a school age child, you are familiar with the shopping and preparing that we get caught up in every single year. If you have a child with food allergies, this entire ritual is also required – and then some. On top of everything you already have to do, you must also take into account the steps needed to make sure your child is safe once school starts. What are these steps, and how can you keep your stress level low while you prep for sending your child back to school? It is not always easy, and the fact that your child's safety is at stake makes this a very serious job. That still does not mean that it has to be a negative experience. With some planning and communication, you can enjoy an open relationship with your child's teacher while keeping your child safe at school.

 

Establish or Update Your Child's 504 Plan

A child's 504 plan should be reviewed every year. The beginning of the school year is a good time to get this done. If your child's 504 plan review is due at a different time, such as mid-year, you can still ask for a meeting to discuss changes or updates to your child's status. This is especially important if there have been changes since the last review.

If your child does not have a 504 plan in place, this is the time to get one. Whether or not children with food allergies can qualify for a 504 plan has been debated in many school districts, but their eligibility has been specifically established in the Americans with Disabilities Act Amendment Act of 2008 (http://www.ada.gov/pubs/adastatute08.htm). You may also wonder whether a 504 plan is necessary if your child's school or teacher has offered informal supports. Although it is great that the school is aware of and willing to work with your child, the truth is that establishing an official 504 document provides your child with the legal protection that verbal agreements cannot provide. Another great resource for getting the process started can be found here: http://www.arizonafoodallergy.org/get-a-504-plan.html. Finally, make sure to have all your documentation together when beginning or reviewing the 504. This means being prepared to provide medical documents and written statements of your child's specific needs. Having all this on hand will help avoid unnecessary generalities in your child's plan and make it as individually specific as possible.

 

Reach Out to School Staff

            A written plan is a great resource, but being active and available as a parent can help establish you as a resource to the school. Get to know your child's teacher and be in frequent contact with him/her via email regarding all school activities, not just those relating to food allergies. Volunteer if possible so that you can see the classroom routines and the teacher's styles. Seeing this first hand can help you work with the teacher to incorporate your child's supports as seamlessly as possible. The more you make this a two-way street, the more complete your child's circle of support will be. An active parent is a great academic and social support for any child, and for a food allergic child, an active parent will also provide that additional sense of safety they need to know they can keep their focus on learning.

 

Prepare Your Child

            How much your child understands and how much your child can participate in his/her own plan is a very individual question. This depends, of course, on your child's age and maturity level. The first thing to remember is to not assume that your child is ready just because he or she is a specific age. One 6 year old might be perfectly ready to carry their own epi and communicate their needs, while another 6 year old is not able to do this yet. As your child's parent, you are in the best position to gauge how much responsibility your child is ready to take.

            Even if your child is not yet able to take responsibility for his or her allergy management, it is still a good idea to talk with your child and inform him or her about being aware to foods and potential dangers. Teach your child to ask questions about whether something is allergy safe, and especially teach your child to only eat foods that are on his or her food plan (packed lunch, snacks provided by mom, etc). For younger kids, AFAA has some great coloring pages that can help to bring up the subject and open the lines of communication: http://www.arizonafoodallergy.org/coloring-pages.html. Ultimately, it is up to the staff at school to keep your child safe, but that also means that school is a great place for the child to begin learning how to manage their allergies independently.

 

            Overall, the fears and anxieties you have when it comes to keeping your child safe at school are well-founded, but that does not mean they have to interfere with the quality of your child's educational experience. It also does not mean that they have to interfere with your ability to enjoy your child's educational experience. After all, soon enough you will have homework, math facts, spelling tests, and science projects to manage! With some planning and preparation, you can reserve your stress for that diorama that your child waits until the last minute to begin. You can also rest easy knowing that you are not alone on this road. The AFAA website has many options for reaching out to other parents, professional organizations, and policy guidelines to help meet whatever needs you may have.

 
 
By: Holly Nace | AFAA Editorial Contributor
I was a young mother, with an incredibly sick child who was not being listened to.
I should have listened.

I knew there was something wrong with my young son.  Appointment after appointment I allowed myself to be quieted by a doctor that was sure I was over-reacting.

What should have been my breaking point was when we rushed to the Emergency Room with our little boy, who was in anaphylaxis shock. Only to return to our Pediatrician, one that we had researched, believed in and trusted with our little one's life, to be shushed again.  It was a freak incident.  "Don't let him have that food." He said.  I felt defeated.

I begged for a prescription for an Epi-Pen.  He said that my son was not big enough for one. My son was over 28 lbs and I was refused a life-saving measure that I felt we desperately needed.  I told them how the E.R. Doctor's said we had just made it in time. WE HAD JUST MADE IT IN TIME. My Pediatrician didn't bat an eye.

All of the memories, the helplessness, and the terror come back to me.  With what I know now, I am ashamed that I did not act sooner.

My young son looked like he was sick on more days than he looked healthy. I asked our Pediatrician if we should be wary of any other trigger foods.  I was extremely hesitant to try peanut butter. I even told our Pediatrician that if and when I had my little boy try peanut butter that we would be in the parking lot of Phoenix Children's Hospital. He laughed at me.  He laughed at me in that small room as I clutched onto my little man.

I was done. I was done being talked down to.  Being talked at, instead of listened to.  I was a young mother, with an incredibly sick child who was not being listened to.

The first visit with our new Pediatrician was for my brand-new baby girl's well visit.  My son was not even present and I told her just a snippet of our history with his illnesses. She immediately gave me an order for allergy testing and a prescription for an Epi-Pen.  I bawled into my new little girl's receiving blanket.  I was just so thankful that she listened, she cared. She assured me that we would figure out what was wrong with him, no matter what. 

I should have listened to the self-doubt, that there was something wrong with my child.  My intuition told me there was an answer.  I let a medical professional make me believe that I didn't know what was best for my child.  That I was overreacting.  I am my child's advocate, their champion, and mother.

My little man is allergic to over twenty-five different foods.  The majority of which were staples in his diet. He is indeed highly-allergic to peanut butter and I am thankful that I at least listened to the tiny voice that said we don't need to try that food.  I did listen.

 
 
By: Samantha St. Vincent, AFAA Event & Education Specialist
Have you ever had the experience where you're looking for something, but can't find it? That happened with his epi-pens. He didn't actually need them, I was doing my paranoid check. But, what if my son needed his medication and I couldn't find it?
Purses are now a black hole for all the things we think we might need. I have everything but the kitchen sink in my bag, and sometimes I throw that in just in case.

When I had to start carrying my son’s Epi-pens I became paranoid and would constantly check, double-check, and triple-check that I had his medications.

Have you ever had the experience where you’re looking for something, but can’t find it? That happened with his epi-pens. He didn’t actually need them, I was just doing my paranoid check. But, what if my son needed his medication, and I couldn’t find it?

Solution? A big, bright-red first-aid bag.

This bag wouldn’t get lost anywhere. It’s easy for anyone to see if I need his medications. I can easily switch bags without worrying about forgetting something.

Here’s a list of everything that is in the “allergy-bag” and why.

I have big pins that say “Epi-pen Inside”. I have one on the diaper-bag and one on his “allergy-bag”. This pin allows others to quickly identify which bag is mine if needed. If I am ever unresponsive, emergency-personnel will check my bag for identification. They will see the pin and quickly locate the allergy-bag, giving them the information needed to protect tadpole since he can’t advocate for himself yet.

The first thing I put in the bag was his epi-pens. No explanation needed.

How will they know the bag is for him? A current picture and information card. Update the picture periodically.

Your information card may have different information. Ours has tadpole’s full name, DOB, home address, emergency contact name and phone numbers (me, hubby and my mom), the name and number of his pediatrician and allergist, list of allergies and medical conditions, and a list of current medications and dosage information. The back of the card has some of his favorite things (ex. toys, characters, food etc.) I’m planning for the worst; I can’t respond and I need to trust emergency-personnel to care for my child until a relative or I can.

Tadpole has asthma so I carry his inhaler. Think of any other medical conditions that your child has and any items needed.

I carry the big bottle of liquid-Benadryl. Use a piece of masking-tape to write the dosage for your child on the outside of the bottle to avoid having to figure it out in a panicked situation. Update this information periodically.

I also carry Benadryl cream and Hydrocortisone. If tadpole breaks out in hives the Benadryl cream will help. The hydrocortisone quickly erases his eczema if needed.

Buy or make a mini-first aid kit. I have band-aids, Neosporin, and gauze pads.

The last item in the allergy bag is hand sanitizer so I can clean my hands before undertaking any mommy-operations.

Is it a big bag? Yes. But, let’s be honest, those of us who have children with food allergies will be spending the rest of our lives hauling around emergency medications, safe snacks and more. 

 
 
By: , | Arizona Food Allergy
PREFERENCE- The Secretary, in making any grant under this section or any other
grant that is asthma-related (as determined by the Secretary) to a State, shall
give preference to any State that satisfies each of the following requirements:... (Excerpt from Text of S. 1884)
President Obama has the School Access to Emergency Epinephrine Act sitting on his desk awaiting signature. Many in the food allergy & anaphylaxis community have seen a lot of buzz about this recently passed School Access to Emergency Epinephrine Act. There are many that are under the impression that this Act is putting epi-pen's in their schools. It. Is. Not. Not directly anyways, although the hope is that it would or may encourage it. So what exactly is this Act all about?

In Arizona, AFAA spearheaded the bill that was already signed into law by Governor Brewer, known as SB 1421. SB 1421 at State level, if budget is provided in that school year - mandates Arizona schools to stock general use epinephrine. If a budget is not provided - allows Arizona schools to stock general use epinephrine. Additionally, SB 1421 provides for school staff to administer epinephrine in good faith and have "good sam" coverage. Arizona also ALREADY has on the books a law for self-carry of epinephrine and asthma medications that predated SB 1421.

So how does the School Access to Emergency Epinephrine Act come into play and what does the bill language say? Well, it is AN INCENTIVE ACT. What does that mean? Does it mean that every state will now supply and stock epinephrine? No. What this means is that if states are able to "check off" all of the requirements listed in the bill, then they will be given preference for ASTHMA EDUCATION GRANTS. It is not guaranteed that they will receive these asthma education grants, only that they will at least be "top of the list" for preference. So for Arizonan's there is no change in our law here, and SB 1421 stands to provide epinephrine in schools as described above.

Where is the silver lining for the food allergy & anaphylaxis community? That said, it sounds like it doesn't really do much for the food allergy & anaphylaxis community - as it is an incentive for the asthma community. The silver lining here is that many in our community have asthma so it is helpful to them, and if anything it is creating more awareness for  the food allergy & anaphylaxis community.