Friday, August 26, 2016

The FAACT Is, You CAN Help the EpiPen Issue

I want to begin this by first applauding each and every person that has helped to voice their opinions regarding the EpiPen cost issue. It doesn't matter if you have been in an article, on television, shared posts or tweets- whatever you have done is another voice that has been heard. I cannot repeat it enough- our food allergy community is a tight knit extended family that takes care of each other. My child is your child. Your aunt who had a close call with an allergic reaction is my aunt. There is not one person that doesn't immediately feel a personal connection with another who shares their food allergy ups and downs. I want to say thank you from the bottom of my heart and soul to all of you- I am truly blessed to be a part of this powerhouse of a village.

Cost is Still an Issue After constant media blasts and outrage, Mylan finally released their form of a response to our questions and comments. They came forward and offered some new options to help the situation which include a larger copay card discount of $300 per EpiPen prescription, continuing the EpiPen4Schools Program and there is some talk of trying to give consumers a direct ordering of EpiPens from Mylan rather than the usual pharmacy route (statement here). This is a start BUT, how many of you are satisfied with this response? I will be honest and say that I am not and this is why:

  • The $300 Copay Discount Card Option- (deep breath) Does this help some if not many families? Yes. However, this STILL is dependent on the same rules of the previous $100 copay discount card which means many will still not be eligible or won't even get close to an affordable price. A page member of mine shared her personal story of what happened when she went through this option: "We have a high deductible. Three weeks ago, using their $0 copay coupon would have cost us more for our EpiPens. I still do not totally understand it but the pharmacist printed us out three different pricing scenarios using Mylan's coupon, the pharmacy coupon and no coupon. The price of the EpiPen was still higher after Mylan's coupon than if we chose the other two options. How is that possible?" So, Mylan- care to explain?
    Photo courtesy Memegenerator.net
  • Patient Assistance Program- Yes, many of you may be asking "They have a patient assistance program?!" Which, again, is a great idea...if it worked.  Another page member shared her experience with this option as well " I am one of those people who no longer has an EpiPen since mine went out of date November 2015. For seven months in 2015, I was out of work with my health issues. I have multiple food allergies and am anaphylactic to corn. When I contacted Mylan to try to get an EpiPen through their program I found it quite extensive and confusing. I'm an intelligent person and I found it difficult to deal with them and forged through the paperwork. In my personal opinion, I feel they do this on purpose. They make it hard for people to do this application. The person who answered the phone made me feel uncomfortable like you're somebody looking for a free handout. I expected to speak with what would have been someone professional and non-judgmental. At the beginning of the call everything was going fine- the lady was all excited about telling me that there are discounts and that it's possible to even get EpiPens for free with insurance. Then when she heard I  did not have insurance her demeanor changed. They took my information and forwarded me the information on how to possibly obtain an EpiPen. It takes months to get through all the paperwork and if you are approved, then it gets sent to your doctor and you have to go pick it up. The application information was sent back earlier this year and I still have not heard anything from Mylan." Seems as if Mylan loves to look happy and helpful but skirt around giving some actual answerson many topics. 
  • Mylan Pathway Option- Ok, so explain this to me also- Mylan is going to create a "pathway so patients can order an EpiPen directly from the company, thereby reducing the cost". Am I the only one asking things like "How does that work if I need an EpiPen immediately- not in a week, not in two weeks and not in two months when the paperwork gets mishandled and it goes missing?" or "Um, your company has drilled into our heads that EpiPens are very specific about temperature control so how will they ship them without the threat of making the epinephrine unusable?" And no offense Mylan- why would you assume that most consumers would get a warm, fuzzy feeling with this? Mylan, if you are not quite sure where my concern for this option comes from, please reread the previous statement I shared above.

The Price OK, I don't run a huge pharmaceutical business but consumers are not stupid either- plain and simple, if Mylan has the power to increase the cost of an EpiPen, they also have the power to decrease it. Let's just be blunt about this- consumers do not care that you are running a business. Consumers do not care if you have supposed red tape here, there and everywhere to deal with (um, it's YOUR business that you purchased soooo it's something you need to deal with, that's why you get paid). Consumers also aren't buying into the excuse that you need to get back money for other things that your company has done. As anyone will clearly see on Mylan's website, they manufacture and market over 1,400 pharmaceuticals. It doesn't take a genius to understand that your budget can be adjusted accordingly. And by adjust the budget we do not mean the newest option that you have presented to us- we mean just lower the price of the EpiPens. And, in case you didn't hear it the first time or understand it let me repeat it for you again - JUST LOWER THE PRICE OF THE EPIPENS. Consumers understand it. Senators understand it. Hilary Clinton understands it. Multiple spokespeople understand it. So, Mylan- why are you the last to understand this? 

What Else Can We, The People Do? You can help gather more factual research by the click of a button. The Food Allergy & Anaphylaxis Connection Team (FAACT) is asking everyone to complete a brief survey to get more specific information on your experience with auto-injectors. This survey will gather not only the cost of auto-injectors from different companies but also pharmacy information, insurance coverage and copay information, school polices and a few other areas that are said to effect the cost of epinephrine. This information will be compiled to be able to increase our power as a community to move forward. The survey closes on Friday September 7th at 7 P.M. EST. This is, by far, one of the easiest ways to make your voice heard! Complete it and share it now- go to www.surveymonkey.com/r/FAACTEpiAnswers . Upon completing, please share with others and tag it using #FAACTEpiAnswers.

Be a part of the change and be someone who will be proud to say that they saved lives. 



Tuesday, August 23, 2016

When EpiPens Attack

Sometimes, when we are trying to do a good thing, bad things happen by mistake. Sometimes, we pick up what we think is an EpiPen training device and...it's not. You're day is going along pretty well, you are trying to educate a friend on how to properly administer an EpiPen and hey, whoops! Wow....that was a real EpiPen. Oh, THAT WAS A REAL EPIPEN! So what do you do? What happens? Is it dangerous when your body is not in the same allergy- reacting mode when epinephrine would normally be used for good rather than evil? Luckily, I had a page member who shared details about the experience.


Hello, My Name is (Withheld)
The first thing this page member requested was that I not share who they are. There was a bit of embarrassment over the whole experience but I am here to say I'm happy they decided to talk about it. It happens- none of us are perfect so why not share it? NutriSon has asked me many times what would happen if it was used by accident. Although it has been told to us time and time again that the risks are minimal, I had always wondered myself. So Name Withheld, I am thanking you ahead of time and please don't be embarrassed- you were trying to show someone how to use an EpiPen. In my eyes and, I'm sure many others, you are a rock star. You may save one of us someday and that would be far from embarrassing. It's the exact opposite of embarrassing.

Just a Small Pinch
Photo courtesy EpiPen.com
Accordingly to Name Withheld (who is an adult) the item was an EpiPen Jr. dosage and it expired in 2012 so this may have lessened the possible side effects. For those of you who don't know, an EpiPen Jr. dosage contains 0.15 mg of epinephrine versus an EpiPen 0.3 mg and the box is green rather than yellow. Still, when someone is so engrossed and is passionate about training someone to save a life, sometimes even different colors and labels are easily missed in the process. Name Withheld told me that they never even realized the auto injector expelled until they saw a tiny amount of bleeding on the area. As a parent who wonders what it will feel like if my son has to have a dose of epinephrine, this makes me feel a bit more at ease. No matter how many times we all see the cool video posted by Dr. Julie Brown or hear people telling is "You will barely feel it" it's still a needle and it still freaks us all out. In case you haven't seen it before, watch below (thank you Dr. Julie for posting this!)


Is your computer spazzing out & won't let you watch it? Click here

See, not too bad right? So then what happens? According to Name Withheld, the area where the injection was given felt a little tender but nothing too terrible. Name Withheld also happily reported that although there was a small amount of dizziness, there was no racing heart beats or anything else. What I did find interesting was that Name Withheld stated there was conflicting information on the internet about what to do if you accidentally inject yourself. For instance, according to Poison.Org it may "sometimes lead to an emergency room visit" and an article on NCBI states "these devices are not without risk: myocardial infarction (aka heart attack) from injected epinephrine has been reported". As a Food Allergy Blogger, I have been told the correct protocol is always call 911 and/or go to the emergency room after using an epinephrine auto injector.

Paramedics It Is
Name Withheld has a family member within the Emergency Medical Service so they were called in to check everything out. No side effects were noted, no rapid heart beat or heart attacks and no other noticeable symptoms other than the embarrassment of it all. And although I hesitated to share the following photo with all of you, I felt it was a must to share. Think about it- you are surrounded by friends and family during this event so of course, someone in the crowd would feel compelled to take a picture of you while you are angry about the entire situation. After all, what are friends for if not to use a photo to sabotage you later on. If you don't have those types of friends, don't like snarky humor or get offended easily, please don't look at the photo below.

And there lies the used EpiPen!
Food Allergies Are Serious
Although I poke fun, I do it because food allergies are so serious. It's terribly nerve-wracking to be a parent and wonder if your child could have a reaction any minute. I don't poke fun to make anyone mad or to make light of such a serious situation- I do it because, in the midst of all of the stress of food allergies, there has to be a place where we can allow ourselves to escape and exhale, even for just a minute. Laughter is essential but so is making sure you are always prepared for a reaction.







Monday, August 15, 2016

Something To "Pique" Your Interest

Crystallized tea packets by Pique Tea
Many of us travel, which can often be challenging with food allergies. Most of us travel with food, which is also a hurdle in itself- finding good products, the ability to bring items with you that are compact and (most importantly) finding products that also taste good. Good food makes us all feel comforted no matter where we are. Maybe it's similar to having a little piece of our home with us while we travel.One of my comforts has always been tea. As a child I can remember having tea and cinnamon toast when I was feeling under the weather. I can also remember those terrible headaches I got before I figured out what triggered them and often, the warmth of tea was a life saver. Now, as an adult and a busy mom, I am always looking for items that are healthy, easy and save me a little bit of time, even if it's a few minutes. That's why I was intrigued when Pique Tea approached me for a product review.

Pique Tea is the Newest Trend in the Tea World
Picture all the comforts of your tea without a messy tea bag to worry about. Picture instant coffee meets the world of tea but in a healthier, organic and travel-worthy way. Picture having your home with you no matter where you are at any given moment. Is tea drinking just a ritual or is it something that many of us use for other reasons as well (you know that tea contains antioxidants, right?). Is there such a thing as making a bad cup of tea? Yes, believe it or not, you can ruin a cup of tea. These are all the things that ran through my mind as I tried this nifty product out for myself. The tea above is the Mint Sencha Organic Green Tea. This was a wonderfully fresh, "clean" tasting tea that was very mild and pleasant.

Rip, Stir, Sip
English Breakfast Organic Black Tea
I know it may sound corny but I am such a person of habit. I wake up, I get myself some tea and this is how I begin each and every day. When I have no tea, I am (admittedly) grouchy and you may not want to talk to me for a few hours. There have been countless times when I have been stuck in a hotel room and I would have given anything for a good cup of tea with a few crunchy treats on the side. I am by no means a tea connoisseur but I know what I like and what helps me get going for the day ahead. Admit it, this English Breakfast Tea looks perfectly inviting...come on, admit it! The individual packets that Pique Tea provides even makes it easy for your kids to bring it to you. Hmmm, this may be a future mommy guilt thing in the works for me! I can see it now Everybody needs something from mommy but when does mom get a special thank you? I could really use just a cup of tea....you get me, right? One of my other newest favorite tea flavors over the years has been Earl Grey so I was extremely excited to see that Pique Tea had sent me a sample of this too.  After many years of personal, hard to diagnose symptoms, I was told that there is a natural antispasmodic found in bergamot (one of the ingredients of Earl Grey tea). I do have to say, this was the best Earl Grey tea I have had- the taste isn't too strong and there is a subtle hint of a citrus taste. Very nice!
Earl Grey Organic Black Tea

Other Flavors
Jasmine Organic Green Tea
I also received a packet of Jasmine Organic Green Tea and, admittedly, I had to go onto the Pique Tea website to see what it was all about. I had never had Jasmine tea before. The official description is "Delicate. Fragrant. Like sipping summer flowers"... I hesitated for a moment as I, Nutrimom, can be picky about certain flavors and aromas since they seem to be one of my headache triggers. But I also knew I couldn't not try it out. I proceeded with baby steps- (sniff). Yes, it smells like flowers but it almost had a hint of honey in it too. Ok, it smells pretty but does it taste pretty? (sip). Still flowery but the taste was a very mellow floral taste- not overwhelming, not too sweet. The end result- I definitely liked it. I also learned that I may need to be a bit more adventurous in my food selections, thanks Pique Tea. I do recommend visiting their website to see their complete line of flavors and products.

Calling All Coffee Lovers!
THIS was the fun part (well, for me anyway). It doesn't matter what I say about Pique Tea if you are a coffee person and not a tea person. It happens. We all have choices and I get it. BUT what if I told you there is an easy way to enjoy your cup of coffee with added natural antioxidants and even a splash of something a little bit on the dessert side of things? I realized that there is a unique quality to Pique Tea (among others)- if you place their crystallized tea onto a wooden spoon and leave it for approximately 30 minutes, the tea hardens to the spoon. You may see this as a waste but I saw it as the perfect way to bring the qualities of the teas to all of my coffee people. Are you intrigued? Do you want to know now?! Click to watch and begin your new coffee experience courtesy of Pique Tea, Enjoy Life Foods, Winona Pure Oils and ME, naturally...well, honestly me since I figured it out ~

(is your device wonky? Click here to watch it now)

Reasons To Try Pique Tea
I always say that products are wonderful but products that offer multiple benefits are even better. Check out the reasons I recommend that you try Pique Tea as well:

  • Organic All of Pique Tea is certified organic and are free from from artificial flavors and preservatives
  • More antioxidants Twice the amount of antioxidants of your typical tea bag (if you are not sure why you need antioxidants, read here)
  • Hot or cold Whether you prefer hot tea or iced tea, these packets can offer you both
  • Heavy metal testing Each batch is tested to ensure there are no heavy metals
  • Variety If you can't choose or like multiple flavors, you can purchase their Variety Pack
  • Gift it There is also an option to send a friend or love on a Pique Tea gift card
 I want to extend an extra thank you to Pique Tea for not only sending out samples but for being patient while waiting for me to post this product review (months, yikes!!) but I do like to show my best for the products that I enjoy. Be sure and visit Pique Tea at www.piquetea.com as well as Facebook, Twitter, Instagram, Pinterest and YouTube.




Never any compensation except for the products themselves to review as my reviews are always honest 














Friday, August 12, 2016

My Dishwasher Broke...Well, Crap!!

Most of us know how it is during the summer with the kids at home. I admit, I am lucky as I can work from home and be with them. But each summer begins the same and ends the same. In the beginning, my days are filled with being grateful for many, small but wonderful things- like not having to wake up at 4:45 AM to make sure everyone gets to school on time. Like not having to rush around to get everyone breakfast and lunches. I get extra hugs and I get to see my kids and... I cook. Ok, cooking- I do that anyway soooo.... I can handle that. But, NutriKids are older now and NutriSon is a teenage boy. Does anyone know how much a teenage boy eats?! What used to be enough for a meal and leftovers is now devoured for the meal, then the rest later that night when I am asleep. It's as if I never feed them. STILL, I can do this! I love summer! I love my kids! Then, tragedy happened.

Don't Know What You Got Til' It's Gone OK, before I even explain, does anyone else know who sang that song? If you do, don't comment but I know you also had big hair like me. About halfway through summer, our dishwasher just died. I saw it coming and one of my friends even told me it would happen. According to her "Yeah, we bought the same dishwasher and the motor died after a year. Good luck." Did I listen? Nope. It was cheap and we could get it home that day so we bought it....one year later, we are in the same boat. I honestly thought I could tough it out for awhile. Well, I did for a bit. I thought it would give me a sense of being humble....how stupid of me. I say this not to sound snobby but because, as fellow food allergy parents know, THERE ARE ALWAYS FREAKING DISHES! It stresses me out! (I wrote a previous post on the subject, just click) I'm sure it stresses you out too. It went something like this:

Week 1:  OK, this isn't so bad. The kids will just dry whatever is in the rack. It'll work, we'll save a bit of money for awhile.

Week 2:  Wow, I didn't realize how much I really cook. And, how many dishes I use when I cook. And how small the dish rack is... It's ok. Everybody has pitched in, they are drying. My kitchen is just a little more messy than usual.

Week 3:  OK, really? REALLY?! I cannot wake up one more day and see dishes- on the counter, in the sink "HEY!! WHO KEEPS FILLING UP THE ENTIRE SINK? I CAN'T WASH THEM IF THERE'S NO ROOM!" And what is that smell? I can't get rid of it...baking soda, lemon juice, boiling water- it's still here! People are going to walk into my house and think I don't even know what. And how am I going to take my food photos when my kitchen looks like it puked on itself?! (breathing, walking outside, pacing...) A voice in the distance Mom, I'm hungry (turning blue, breathing, sighing, opening something frozen. Thank goodness we have chicken nuggets!)

"Dishes" It, I Give Up ......even families like the Duggars who have a ton of kids to help do dishes are also STILL washing dishes! There are probably Amish people somewhere right now washing dishes and I am complaining about it but I can't, I just can't... Not to mention that having a dishwasher is a HUGE help with making sure that there is no cross contamination with any foods that my son is allergic too. One morning, I made myself eggs (he is allergic) and I realized that I had no way to clean everything unless I got a new sponge, cleaned out the sink and wiped everything down with wipes whereas, with a dishwasher, it's rinse, put into the dishwasher, push the little button. Am I spoiled? Am I whining? Maybe but I am not too proud to say, I give up.

Wash Your Sadness Away Just as I was about to turn into a scene from Mommy Dearest, I got a call about a dishwasher. I have never driven so fast in my entire life. And although NutriHubby was on vacation (and I know he probably thought horrible, evil thoughts about me when I asked) he just sighed and got to work hooking up the new dishwasher. I appreciated it. I calmed down. I felt like everything in the universe was beginning to go back to it's normal balance. Does anyone else know where I'm coming from? I mean, if your kitchen looked like this all summer, wouldn't you be losing your mind just a little? Tell me, please- tell me I'm not just a crazy blogger who still loves what she does.

On the plus side, we had Spinatos pizzas ;) 


Friday, August 5, 2016

Make a Mad Dash for Enjoy Life Foods!

#WaradyWonka ;)
Ok, well, maybe the term "mad dash" may not be the correct way to phrase it- who could ever be mad when they get more Enjoy Life Foods products? And it's uber-awesome how I've seen so much more availability in many of my local food stores as well. Less gas, less zooming to and fro and more allergy-friendly items right at my fingertips. What else can a food allergy parent ask for? Well, I could ask for exactly that- having Enjoy Life Foods right at my fingertips. Literally.

So now there is a really cool feature that has been introduced called the Enjoy Life Foods Amazon Dash button. Why do I love this button? Let me list just some of the reasons:
  • If you are not as lucky as me & need to get faster access to Enjoy Life Foods this will do that
  • You can actually get the Dash button for free (see details here)
  • When the weather is bad, just push and you shall receive
  • A great way to make sure your allergy-friendly snacks never run low
  • You can rename it your "panic button" and use it for fast, last minute needs like birthday parties, school events, sports practice and more
  • It comes in a cool, little box and hooks onto things
  • As a parent, you (may) even use it as leverage to get your kids to do chores and homework
  • Your husband can secretly order your favorites without telling you
How Does it Work Exactly?!
Do you love Enjoy Life Foods? Do you have an Amazon account? Order a button and you are done! Push, order and in a few days, watch for the package to arrive on your doorstep. Make sure you watch for it- some neighbors may get wind of it and be inclined to "borrow" your Enjoy Life Foods products...how rude. 

For complete details on this new feature, visit the Enjoy Life Foods blog here, go directly to the Enjoy Life Foods Amazon page here or if you are still not sure, watch this quick video that shows you how it all works. Then all you need to do is relax and eat, which I like to do....did I mention that I like eating? 

What This Button Cannot Do
Sadly, there are a few minor flaws to this new age contraption. 
  1. You cannot keep it within your childrens' reach or you will wind up housing waaaay too many Enjoy Life Foods products before you planned too. 
  2. You cannot give it to anyone's cute baby to play with (for the same reason I just mentioned) plus, the button would get all full of baby slobber. 
  3. You cannot use it as an emergency spoon
  4. You cannot wear it as a cool new fashion trend because too many people may get jealous (well, and people will want to push the button and we already know how that goes). 
  5. You cannot reuse the little box it comes in because nothing else actually looks like it...well, maybe you can fill it with some Enjoy Life Foods Mega Chunks but then they would fall out of the cute little window thingy
  6. And, it is not a magnet so you cannot put it on your fridge for easy access...hmmm, hey Enjoy Life Foods, can you do that? Make it into a magnet for the fridge? And maybe compensate me for the idea? I accept all forms of payment including products :) 
Order yours now (here's the link again in case you are too lazy to scroll back up) and for goodness sakes- somebody pick up the button off of my floor- you know I'll wind up stepping on it and breaking it! Broken button means no extra goodies to NutriFamily and what kind of a mother would I be then?!








#eatfreely #dashbutton 

Monday, August 1, 2016

Bring the Beach To You

Eating gluten free can sometimes mean extra budgeting. Extra budgeting  an also mean more staying home and less trips away. Staycations are cool but bringing the beach right into your own home can be even better. No, WAIT! I meant to say that having your beach and eating it too can be fun, delicious and just the right way to have everyone in the family enjoy a gluten free summer. Dare I say, a safer summer?

No Need To Avoid the Water
It's a bummer when you get to the beach only to find out that there are signs posted warning you to stay out of the water because of sharks. It's not your first choice but nobody wants to be the actual scene from Sharknado. So I say, if you are afraid of the sharks, bite them back! These are the only foolproof way to have gluten free sharks that will end up in your belly and a smile on your face (as opposed to the real beach where a shark warning may leave you with no face....no face means no eating..).

Make these NOW- watch here
Vanilla frosting of your choice
Blue food coloring

Bake Time:          12 Minutes
Assemble Time:  10 Minutes

  1. Prepare the Sugar Cookie Mix as directed and let them cool completely* 
  2. Using a pastry bag, frost the cookies with your choice of vanilla frosting. I recommend using the pastry bag to make the waves look more realistic.  
  3. Add a few drops of blue food coloring onto a plate. Dip one end of a toothpick into the color, then use that to make the wave swirls. 
  4. Cut a Glutino Frosted Blueberry Toaster Pastry into small triangles, making sure the ends expose the blueberry inside (do not use the edge of the pastry).  
  5. Insert one triangle into the frosting of each cookie.
  6. DON'T throw away those extra pieces of Frosted Blueberry Toaster Pastry! I have an easy 3 ingredient recipe for that too- click here for the recipe 
Serving sizes vary

* Are you egg free? Great news- the Glutino Sugar Cookie Mix can be made egg free! Add 2 teaspoons Ener-G Powdered Egg Replacer into the dry mix and stir. Then add 1- 4 oz. applesauce into the mix. 

Sharks Avoided, Now Put Your Feet Up
Phew! No biting except what is being done by you so now it's time to relax. Even when you are not at the beach, most of us think summertime means sandals and walks on the beach. Nothing beats the feeling of sand between your toes- or, does it? How about if the beach was made of Chocolate Covered Pretzels? And what if you could eat your sandals too? 

Easy tutorial here

Glutino Chocolate Covered Pretzels (ground or crushed)
Vanilla frosting of your choice
Glutino Lemon Wafers

Bake Time:          12-18 minutes
Assemble Time:  5 Minutes

  1. Prepare your Glutino Decadent Chocolate Cake Mix as directed in a cupcake tin and let cool completely.
  2. In a mini chopper, add your Chocolate Covered Pretzels and pulse until you reach desired texture
  3. Frost each cupcake with your choice of vanilla frosting
  4. Sprinkle the crushed Chocolate Covered Pretzels onto each cupcake and set aside
  5. Using a cutting board, cut one Glutino Lemon Wafers in half (1 wafer will provide 4 sandals)
  6. Using a sharp knife, gently carve out a sandal shape
  7. Very gently cut the sandal shape in half, keeping the wafer texture side up
  8. SAVE those extra Lemon Wafer pieces! I have an extra recipe for those too! Go here
  9. Take one Surf Sweets Sour Worm and cut it lengthwise in half
  10. Leaving the top intact, begin to cut each half in half as well 
  11. Place each on one sandal, trimming the top and side of the Surf Sweets Sour Worm to fit on each sandal but still wrap around to the back
  12. Place each sandal onto your frosted cupcake
  13. Optional- top with a small umbrella 
Makes approximately 12 cupcakes

Being healthy can be fun, it should be fun! There is no reason to fear your gluten free products. Can eating and preparing gluten free recipes be tricky? Yes but never, ever stop trying. Let your mind think about new ways to utilize your gluten free products and see where it leads to. What's the worst that could happen? You may wind up loving your foods even more ~






Thursday, July 28, 2016

EpiPen- Money Vs. Living

There has been a lot of coverage in the news as well as within our food allergy community over the past few years regarding the increasing costs of EpiPens. With food allergies on the rise, it's frightening to think that an innocent life could be lost just because the necessary life-saving medicine was not something that could be afforded. Everyone always says a person's life is priceless but saying that and actually being able to make sure of that are two very different things. What's sad is that many of us are being forced to choose between having EpiPens to prevent a possible tragedy or not having it and holding our breath in hopes that we won't have ever be in a situation that can never be forgotten.

EpiPens Cost Money
This is just the cold, hard truth. But the real question is WHY? This is a difficult subject for me to discuss as I have shared my thoughts in the past with Mylan (marketing company for EpiPen) and I truly am a person that always tries to give others the benefit of the doubt. You may have noticed that there has been a flurry of spokespeople working to discuss food allergies and EpiPen. Do I appreciate that celebrities are sharing their personal allergy stories? Of course but (there is always a but) the life of a famous celebrity is not quite the same as your everyday food allergic person. In every day life, most of us do not have the extra income to keep as many EpiPens on hand, most of us do not have a live-in chef or nanny to give us the added cushion of knowing that the chance of an allergic reaction will be much less. When I reached out to the representative at Mylan about why EpiPen costs had increased, this was the answer I received "Mylan does not set the final retail cost or out-of-pocket expense charged to patients. The pharmaceutical supply system is complex and, in addition to pharmaceutical manufacturers, involves multiple parties such as wholesalers, pharmacy retailers, pharmacy benefit managers and payors. These parties all play a role in determining access to, and the ultimate retail price of prescription drugs. Any changes within this broader system can effect the final retail price charged to a patient throughout the course of a year. We encourage consumers to check with local pharmacies before having a prescription filled. Websites and apps offer tools to compare the price of prescriptions in local pharmacies." IF this is how the EpiPen prices are increased as well as any other necessary medication, why are we not hearing about people complaining about other drugs too? Some of my thoughts were shared on a WSOCTV by Jason Stoogenke.

View the tv segment here

YOU Can Be the Change
Our voices and the voices of our families can make a difference- they always have! One of the newest ways is to sign a petition on ForeChange.com to help make life-saving EpiPens affordable for everyone (click HERE to sign). If this system is so complex, as stated from my Mylan representative, then let's begin at square one and work together. Let's stop pointing fingers and be a part of changing the cost. Let's show the industry that we are the ones who want to be a part of this system to make it easier for everyone. Is there data that states who should be eligible for the medication to keep them alive and who should not? No and there never should be. Those children that succumbed to an allergic reaction because they did not have the EpiPen they needed- I consider those my children. That teen who ate a cookie that unknowingly had trace amounts of their allergen- that could be my son. Those people who tried to wait to get to a nearby hospital to use their EpiPen because they could only afford to have one - that could be my family member or even me. Make your voice heard and sign the petition now. Go to https://forcechange.com/159185/make-life-saving-epipens-affordable-for-everyone sign it and share it. It may not be the answer but it's a start and from a few voices comes an army of support. There is also another petition (hey, if you want to be the change, do it with everything that you have, everywhere!) go to http://www.petition2congress.com/20720/stop-epipen-price-gouging/. 

The Price Tag
Is there help for some of us to be able to get EpiPens at a discount or even free? Yes but the few alternatives don't always mean they apply to you and your family. The EpiPen $0 copay card can be used in conjunction with some insurance plans but even with this option, they may only cover $100. As you can see in my receipt, without insurance and the EpiPen copay card, our EpiPens would have cost us $1,819.08....how many people do you know that could actually afford this? Ever?! And how does a food allergy parent ever begin to justify not being able to pay this to keep their child alive? In fact, there should never even be the thought of having to watch your child die because of this. That is not acceptable to me and it should not be acceptable to anyone else. Our family is lucky- our insurance covered three EpiPen Twin Packs for $50, then we applied the EpiPen copay card which brought it down to zero. This was wonderful for us but this is not just about how it effects me and my family- it's about making sure everyone else's family is safe as well. It's about support and  helping others stay safe. I keep a set of EpiPens in my purse in case I ever come across someone who needs it- it doesn't matter if it's not my allergic son, what matters is that I help someone who needs it.

More Money Saving Tips
One tip I wanted to share that was passed on to me from our pharmacist Gunar Stowers at Robinhood Family Pharmacy- have your doctor write out the EpiPen prescription for 3 Twin Packs with refills. The prescription will be filled as such (rather than fill one Twin Pack, then go back a month later) and it allows you to get all three EpiPens for the cost of one. This may take some extra work between your pharmacist and your insurance company but it's an easy way to save on the medication and have more of it. Having extras means one less change of a reaction that cannot be treated.

A second way to ensure longer access to EpiPens is one thing that everyone should do- BEFORE your pharmacist rings up your prescription and BEFORE you leave the pharmacy, check the expiration dates on your EpiPen boxes. You are paying for one full year of this medicine and that is what you should be receiving. If your EpiPen expires in less than one year, ask the pharmacy to look through their stock for another box. If they give you grief about it, you may want to consider looking for a new pharmacy that does have your family's best interest at heart. Much like your doctor, your pharmacy is a part of keeping your family alive and well and they are there for you, not the opposite.

I Still Have Hope
Dear Mylan, your company has done wonderful extraordinary things for our community over the past few years. You have provided free EpiPens for schools, you have continued the $0 copay card and you have even been a part of helping multiple states mandate that schools carry EpiPens. I ask you for my family and for others to please help our community with this struggle- continue to be the better company, continue to show your gratitude for all of the people that appreciate what you have done in the past. To be very blunt, what is more important to you- knowing how much money will be inside of your pocket at the end of the year or knowing how many lives your company alone has saved?



I went back through my son's receipts and was astonished at the price difference! 


Share Your Thoughts Below
I want to hear your thoughts about this situation and how it effected your family. A few years ago, Mylan had a website that showed all of the faces using an EpiPen- I am asking all of you to share your photo or a comment below to show Mylan all of the faces that NEED EpiPens but cannot afford them.