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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: Beth Blankenship | AFAA Editorial Contributor
Have you ever wondered how to live with food allergies while also being on a budget?  Over the last few years I have tried to do just that. 
Have you ever wondered how to live with food allergies while also being on a budget?  Over the last few years I have tried to do just that.  I have helped my family learn to be healthier and kept them safe.  Here are a few tips that I hope will help you to live with food allergies and stay within your budget.
*  Be on the lookout for sales, close out prices, etc. of your favorite safe products.  For example, I recently bought shelf stable rice milk for my youngest at about 40% off at Target.  Scan sales and clearance areas and stock up when you can.
*  Sign up for emails, coupons, etc. for your favorite brands.  For my daughter who is gluten free (and for other allergies too), I have saved a lot just by finding coupons.
*  Freeze safe, healthy produce when it is on sale. 
*  Stick to your favorites.  When I was new to being a food allergy mom I tended to buy multiple varieties of the same kind of food.  
*  Don't be afraid to try new things, all while being careful of course.
It takes extra time to make these tips work, but it will be worth it.
Let us know if you have any other tips to share!
 
 
By: Melissa Enos | AFAA Editorial Contributor
"When you feel like keeping your child safe and well-nourished at home is a full time job already, how can you possibly even think of leaving the city, the state, or even the country to take a family vacation?" 
It's vacation season!

The kids will be out of school for the summer before we know it. If a road or airplane trip is in your plans, you know that it is never too early to start preparing.  

When you feel like keeping your child safe and well-nourished at home is a full time job already, how can you possibly even think of leaving the city, the state, or even the country to take a family vacation? As a parent of a child allergic to multiple foods, I have been there and done that a few times already and have lived to tell the tale. Even better, my child has lived to tell the tale, and my family has some wonderful memories to share. This is what family vacations and family time is all about, after all, so the extra hassle is worth it. In the end, you will be glad that you did it. Some extra planning is always necessary, and once you do that, you will end up with a much happier and less stressful vacation. Here are a few steps to consider as a good starting point for that awesome trip:

Check with Your Airline Carrier

Every airline has their own policies for managing children and adults who have food allergies. The problem can be that they often pass out bags of peanuts or trail mix during the flight and this can obviously cause a danger to people who have allergies to these foods. Some airlines are more helpful than others, so it's good to check around and see the experiences that different people have had on different airlines. This could have a major effect on who you book besides just the cost of seats on the plane. JetBlue, for example, has a policy of not serving peanuts or tree nuts at all, however this does not mean that passengers boarding the plane will not have peanuts or tree nuts on them. United has begun a new policy of asking passengers who sit near the food allergic person to not eat foods with nuts in them. However, they have no way of actually enforcing this if the person chooses not to comply. Again, always read reviews, check experiences online, and call the airlines for specific policies before booking your flight. Once you have done that, make sure to talk with the staff on board the plane to make sure they are aware of your child's needs and to see how you can work with them and make sure that everybody has a safe and enjoyable flight. In these cases it works best to "kill them with kindness" instead of making demands. This is less stressful for the flight crew, less stressful for you, and also a good way to get your vacation started on a good note.

Plan Your Pit-Stops

So a road trip is more your style? It is for us! A well-planned road trip doesn't mean simply knowing what highways are clear at what time. Having kids in the car demands always having a toilet stop in mind anyway, so it helps to pair your planning with snack stops in places that have safe foods to eat. Call ahead, research websites, and know what's safe to order. That way, you're not left scrambling or wondering what your child can eat while driving an unfamiliar highway with the "I'm hungry!" and "I need to go potty!" chorus echoing from the back seat. If you reach a planned stop and the chorus has not yet begun, stop anyway. Trust me, they will end up needing to go, and they will want a snack. Your blood pressure will thank you in the end.

Book Your Hotel Wisely

So you've figured out how to get to your destination! Great! Now, what about your hotel? Many hotels have free continental breakfasts, and this is a great thing for many of us. Unfortunately, this is not such a great thing for children allergic to the majority of what most hotels offer. One thing my family has learned is to simply book a hotel that has a kitchen already included in the room. No, this doesn't mean an expensive suite. In fact, in my family we are firmly of the belief that the hotel is just where you crash, and the money should be spent on all the fun that goes on outside the hotel. At least a couple hotel chains offer rooms with kitchenettes at reasonable rates, Days Inn being the one that we tend to frequent. Besides offering a more safe and convenient way of feeding your child hot and nutritious food, a kitchen can actually save you money by having breakfast "at home" instead of going out. The practical mother in me also loves kitchenettes because they save me time. This means I don't have to wake up early to make sure everyone is ready on time to leave early to get to the restaurant (a great way to start the day frazzled when no one has eaten yet). We can simply have breakfast while other members of the family are showering, doing their hair, or getting dressed. It's a great way to sleep in and start the day with a more normal and familiar routine, and as hard as my family plays, this is a very good thing!

Communicate With Your Destination

Most popular vacation spots, especially amusement parks, have very strict policies as to what foods you can and cannot bring into the park. Most times, simply letting the attendant know at the gate is all you need to do. However, other parks, like Sea World, are much stricter. Sea world boasts their food allergy friendly menus and their ability to cater to persons with food allergies. Therefore, they are likely to suggest you talk to the person serving your food for food allergy friendly options. In our case, having a child with so many food allergies as well as food aversions, a complete meal that he could eat safely is simply not realistic to expect any park to prepare. I emailed the park weeks ahead of time to let them know of my situation, and after a few back-and-forth emails (where the staff was sure they'd be able to offer suggestions that could work), they finally wrote a letter for me to present at the gate allowing me to bring in my own food for my son. Although this is the most work I've ever had to do in communicating with an amusement park, I was very impressed with the way that Sea World handled my situation. They are truly making an effort to cater to persons with food allergies, and frankly if they had been able to offer something that would work, I would've been thrilled! It would've meant that I wouldn't have to carry food for my son, and that would've meant one less bag on my shoulder. The main thing to remember when working with any vacation attraction is to communicate with them in writing ahead of time to see what their specific policies are and how they can work with you. It is always best to take care of this before you reach the location in order to avoid any unnecessary stress (yes, lessening stress is very much a theme in everything I do!). The last thing anyone wants is to be stuck at a gate waiting to explain your situation to a manager when all you and the kids want to do is go play.

Make a List - And Check it Multiple Times!

There are many things that tend to get forgotten when we go on vacation - Epi pens should not be one of them! This, I'm ashamed to admit, is one mistake that I have made, and it was an expensive one. Sure, I checked my list before we left the house. I had the Epis with me when we got in the car. But after switching to a rental car at a family member's house before heading out on our road trip, the purse with the Epis was left in our family car. We ended up calling our pediatrician to have her call in a prescription for us to pick up at our destination. That was $300 we didn't want to spend right off the bat, but a lesson definitely learned. Make sure you know where your emergency materials are at all times, and check for them before you leave any car, restaurant, museum, park, etc.

Identify your Child

Take extra steps to make sure your child is safe in the event that he or she gets separated from you. If your child is too young to provide park staff with your contact information - and just as important, allergy information - make sure they are wearing that information on med alert IDs of any type that is convenient for them to wear. It's one thing for a well-meaning staff member to have your cell phone number to call with your child's location, but the same well-meaning staff member might also be tempted to try soothing your frightened child with a chocolate chip cookie while they wait. It's best to avoid this situation if at all possible.

Take a Deep Breath, and Know the Hassle is worth it.

Yes, this can be a lot of work. If, like in my case, your child's list of allergies includes most of the "top 8," the work can be even more daunting. All I can say in response is that it's worth it. If the thought of managing allergies is the only thing keeping you from making the decision to book that trip, I say go for it. There is enough that our children have to say "no" to when food and socializing is involved, the last thing I want is to tell my son that vacations and trips are on the "no" list as well. I can say from first-hand experience that all the trouble was worth it 5 minutes after walking into Disneyland when I got to see my little boy run into Pluto's arms. That first trip was scary to plan, but the more we do it, the more it becomes part of our normal planning, and the more grateful I am that I decided not to listen to my "crazy over-protective mom" inner voice.
 
 
By: Melissa Enos | AFAA Editorial Contributor
When you think of what you fear your child getting a hold of, what comes to mind?
Quick: Think of the question from a parent's perspective – what is dangerous to eat? When you think of what you fear your child getting a hold of, what comes to mind? For a food allergy parent, the answers might surprise you. Back in the early days of having a mobile toddler and the challenges that come with this milestone, I learned this lesson in the most interesting way. It was easy to protect my kid before he could crawl or walk. The only things he could put in his mouth were those that I put within his reach, right? It was great! Then he discovered the joys of movement, and…well…every parent knows the adventures that come next.

            We all know about the marbles, the building blocks, and anything else smaller than the diameter of a toilet paper roll. Being a good parent, I thought about those things as well. Maybe I was a little bit obsessive about it all, but better safe than sorry was my line of thinking. The funny thing is that even my obsessive nature didn't manage to stop all possible threats. One cold and rainy afternoon (translation: an afternoon with two young children bored out of their minds and wreaking havoc around every corner of the house), I finally managed to settle them down with a table full of paper and crayons. My little guy, being 2 ½ years old at the time, couldn't wait to follow his big sister's lead in creating a masterpiece. You can probably guess that I ended up pulling a crayon from his mouth not five minutes later. No big deal. At least I had to deal with that and not the two of them getting on each others' nerves.

            I never predicted what happened next, however. Just like one of those movies where the crazy dramatic action sequence happens in slow motion, I noticed my son reaching for a random cheese cracker that had been left on the table at some point. I practically dove over the table in an effort to reach the kid before that cracker made it to his mouth, thoughts of his severe reactions to milk products going through my head in torturous detail. Surely the characters from The Matrix movies would have been proud of me. Even better, I did manage to keep him from eating the cracker. I was so pleased with myself that I hardly even noticed the ache in my hip from having rammed it into the table when I landed.

            This was, for me, the moment when I realized that I truly am living a different kind of life now. I guess I kind of knew it before then to the point that I just made sure to give him only foods and drinks that were safe for him, but this is when the reality of it being much more than that actually hit me. Food allergies are so much more than just something I think about at feeding time. They're part of my family's life in every aspect starting with playtime, but I knew that soon enough it would be preschool, birthday parties, friends' houses, school, and everything else he might want to do. It was all suddenly as overwhelming as the day we got the list of allergies that affect my son to this day, and even more memorable to me than the actual diagnosis day. It was the day I realized this was a whole new way of life – not at all the one I had planned on for my children. When my son was first diagnosed at the age of 6 months, we were told there was an 85% chance he would outgrow everything by his third birthday. At the time of The Great Cheese Cracker Debacle, he was only 2 ½ years old. Maybe that was when I realized that things wouldn't be okay with less than 6 months to go before his birthday. I was living in a type of "temporary problem" denial that was shattered one afternoon when I dove over a table for a snack that's found on and under car seats all over America.

            Hard as that day was, it was also kind of liberating. I was finally free to put together a new life for my son and family – one that is safer, more realistic, and more inclusive of his unique needs. I was finally free to move forward and accept things as they are without the shadow of denial clouding my vision. I'll admit it's still tough sometimes. I wish the sight of a popsicle could make my little boy happy and not anxious, and I wish our entire kitchen didn't have to become a hazmat zone whenever someone spills a glass of milk. I wish this wasn't the reality of our life, but it is. It is our reality, and until it isn't, I'm finally at peace with this life.

            Moving forward in this new year, I resolve to take my acceptance one step further. The food that my son can have will no longer just be what we provide to keep him safe – it will become a central and integrated part of our entire family's diet. Our meals will be those that all of us can have and we will move on from simply providing a separate meal for my son. I guess that means a new adventure in learning to cook, but it's a good next step to take. Acceptance took quite a while in my case, but it's a great feeling, and a great opportunity to move past the fear and denial of those pesky cheese crackers.