cvs pharmacy sign

When CVS Responded to My Blog About Trying to Afford an EpiPen

Several months ago, I wrote a post called EpiPens Are Not Just for Kids: the Mylan Price Spike Affects Adults. My experience trying to buy a EpiPen from a pharmacy was surprising, and I wanted everyone to know.

I have news about this experience that is even more important to share.

Some background: I have a severe, life-threatening allergy to seafood. I’ve reacted with equal intensity to shellfish and regular fish, and that reaction is terrifying. My mouth begins to itch — an early warning sign — and soon afterward, I begin to feel my throat go numb. Once that sensation begins, I know that I have precious few moments before I will begin to have trouble breathing. That’s my cue to get help quickly.

To avoid dying from the accidental ingestion of seafood, I carry an EpiPen. EpiPens are epinephrine auto-injectors meant temporarily to arrest a severe allergic reaction quickly so that the allergic person can get to a hospital. The term “EpiPen” is actually owned by a company called Mylan, which owns the rights to that particular model of epinephrine auto-injector and, this past fall, came under intense public anger for raising the price of these life-saving devices exponentially. You can read more about this price hike and the history of the EpiPen brand on Timeline.

After the frightening allergic reaction I had to fish oil in a chewable Vitamin C tablet in late 2015, which I wrote about in my original post, I went to my allergist for a refill of my prescription for an epinephrine auto-injector. Though I was careful to get a prescription that would allow me to choose a cheaper, generic auto-injector instead of the Mylan brand EpiPen, I had a very hard time getting the pharmacy to fill the prescription for me. I wrote in September about how the pharmacist first gave me the Mylan brand without asking, charging me $280, then hemmed and hawed about the existence of a generic, then claimed my doctor wouldn’t prescribe a generic and, finally, after I stood my ground, suddenly remembered a coupon from Mylan’s web site that would allow me to get the name brand for free.

It was a maddening experience to have all alone in a pharmacy with no one but myself to keep in check. If I’d had several children with me, I can only imagine that my patience for waiting might have given out long before the pharmacist “remembered” the Mylan coupon.

Recently, though, something interesting happened. I received an email from a PR representative at CVS Pharmacy’s corporate offices. She had read my blog post and wanted to ask me to share some news from CVS about something they’re doing to resolve this problem. You can read their official release here, but some highlights include:

“We recognized the urgent need for a less-expensive epinephrine auto-injector, and are proud to offer a low-cost option at all CVS Pharmacy locations. Patients can now purchase the authorized generic for Adrenaclick® at a cash price of $109.99 for a two-pack – the lowest cash price in the market. This authorized generic is a Food and Drug Administration (FDA)-approved device with the same active ingredient as other epinephrine auto-injector devices.” (emphasis mine)

For those who are doing the math:

  • Without insurance, the Mylan brand EpiPen costs $600 for two auto-injectors.
  • With my excellent employer-sponsored insurance, the Mylan brand EpiPen would cost $280 for two auto-injectors, unless Mylan offers a coupon and you either know about the coupon or the pharmacist bothers to tell you about the coupon.
  • The generic AdrenaClick® autoinjector will cost $109.99 for a two-pack.

When the PR representative from CVS wrote to me (she asked not to be mentioned by name), my immediate response was to ask if there would be any internal PR about their new plan. After all, Mylan coupons were not suggested to me until I’d pushed hard for the generic. The CVS representative wrote back to me right away. She said, in part:

“… all pharmacists at CVS Pharmacy have been educated on the new epinephrine auto-injector option and are able to discuss with customers how medication costs are affected under various health insurance and discount plans that CVS Pharmacy accepts.”

Now here’s the most impressive part of this story, for me. I deliberately had not included the name of the pharmacy in my first post on this topic. I didn’t want to risk legal action or make assumptions about the way the pharmacy chain had educated its employees — after all, maybe I just got a pharmacist who forgot about the coupon or was new to the pharmacy or was having a bad day. However, this email from CVS and, in particular, the response I got from the PR representative, reveals a corporation that seems like it has thought carefully about how to serve vulnerable food-allergic patients and their families. I believe it reveals a corporation with a real heart.

The pharmacy where I had the experience I describe in EpiPens Are Not Just for Kids: the Mylan Price Spike Affects Adults? It was a CVS. And it looks like the experience I had might not happen again.

If you are a food-allergic person or the parent of one, please go to a CVS and ask about filling your epinephrine auto-injector prescription. Write back to me here and let me know how it went. If it goes the way it looks like it should, based on what I learned, let’s fill the web with great stories. Let’s fill Facebook and Twitter with this news. Let’s give CVS as much good press as we can. I’m looking forward to hearing your stories.

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Photo via Wikimedia Commons by Ildar Sagdejev


man pushing grocery cart

Why Food Allergies Are a Disability

Imagine every time you ate a meal, you had to deal with the possibility that what you were eating could make you very sick at best or possibly kill you at worst.

That’s what it’s like for many of us that live with food allergies.

I have been diagnosed with multiple food allergies, sensitivities and something called histamine intolerance. Histamine intolerance is a disorder in which your body cannot break down histamine properly, so you have to stick to eating foods that are low in histamines, otherwise, your body is overloaded with histamine and you become very ill.

Eating out is never really a possibility because you can’t really be sure how the food was prepared and if the waiter/waitress has taken your “food allergy ordering speech” seriously. Going to visit family or friends becomes an ordeal where you have to have prepared meals and snacks on hand. And holidays can be extremely stressful having to cook all special foods for yourself. You have tell your host that it’s not personal and there is nothing wrong with their cooking. Sometimes they insist on making something for you that’s allergy friendly. The problem is, they really don’t know exactly how to prepare it and one innocent mistake could cause you to become violently ill. It’s all very anxiety producing.

Food allergies are a disability. There have been many times where I got sick and had to take high doses of Benadryl. I was left exhausted and “hung over” the next day, forcing me to cancel plans. It makes you unreliable. You never know how you will feel or how your body will react to the food you eat, even when you are taking the proper precautions to avoid your allergens.

I remember one occasion when I bought gluten-free cookies. They were oatmeal raisin. Well, that day I found out the hard way that I am allergic to grapes. My mouth was on fire, I was dizzy and couldn’t breathe and I was red from head to toe, like I had gotten bad sunburn. My mother dialed 911 as I was on the verge of passing out. Next thing I know EMTs were injecting me with needles and I was in the hospital. All that for a f**king cookie! 

Other allergies like chemical sensitivities, allergies to dog/cat hair, allergies to perfumes, etc. —  they can make traveling a nightmare. Will someone be wearing heavy perfume on the flight? Will there be a dog on board? You can’t visit your friend at their house because she just got a cat, so you have to get a hotel room. And not just any hotel room. It has to have a kitchen so you can cook your meals. 

These allergies affect every detail of our day-to-day living, and everything must be planned in advance because eating is something you must do daily, so it’s pretty unavoidable.

Eating the wrong thing can cause severe digestive distress, nausea, painful bloating, vomiting, dizziness, rashes, shortness of breath, fast heartbeat and feeling you might pass out. Sounds like fun, right?

Food allergies are disabling and can really ruin a person’s life. If you know someone who has a food allergy or multiple allergies, please don’t make them feel like they are being dramatic, faking it or making it all up in their head. They’re not trying to be difficult. They’re just trying to stay well. It’s a horrible way to live. Show compassion and understanding.

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Lead photo by Thinkstock Images

a photo of peanuts in their shells.

NIH Changes Peanut Recommendations to Help Kids Avoid Peanut Allergies

Doctors are now suggesting parents expose children to peanuts earlier.

A new statement released by the National Institutes of Health (NIH) suggests children should be fed peanuts in their first year of life  – a significant deviation from previous guidelines set in 2000 by the American Academy of Pediatrics, which told parents to wait until after their child’s 3rd birthday to give them peanuts. The new guidelines are based on a 2015 clinical trial, which found that children with a high risk of developing a peanut allergy who ate peanuts regularly starting in infancy up until age 5, were 81 percent less likely to develop an allergy.

The new recommendations, which are also supported by the American Academy of Pediatrics, set three different guidelines for introducing peanuts into your child’s diet. The first guideline addresses children considered high-risk for peanut allergies – those with severe eczema, egg allergy, or both. Those with a high-risk of developing a peanut allergy, according to the new guidelines, should have foods containing peanuts, introduced into their diets between 4 to 6 months of age. Those in the high-risk bracket should also be evaluated be a physician for skin and blood allergy tests before being fed peanuts.

Children in the second category, those with mild or moderate eczema, should be introduced to peanuts around 6 months. Children in the third category, those with a low risk of developing a peanut allergy, can have foods containing peanuts introduced into their diets as their parents see fit, once they are able to eat solid food.

Doctors are encouraging parents to follow the new guidelines, hoping the new recommendations will decrease the rising rates of peanut allergies. “There is this magic window of opportunity, where you can introduce peanut-containing foods,” Dr. David Stukus, a pediatric allergist in Ohio and coauthor of the new guidelines, told Stat News. “Our immune system undergoes dramatic development and maturation during the first years of life. We introduce peanut-containing foods early, the immune system can get used to it.”

peanuts in shells and eggs next to each other

When Others Can't See My Son's Food Allergies

“He looks perfectly normal to me.”

The woman inspected my son, evaluating him for signs of his food allergies. She stared into his blue eyes. He stared back, trading his glance between his mother and this stranger. He was 3 or 4 at the time, tow-headed and already familiar with his well-learned phrase if anyone offered him food: “No, thank you. I have food allergies.”

“That’s because he is.” I cringe a little inside at the thought that some people are looking for outward evidence of my son’s life-threatening food allergies. If he’s displaying evidence, something has gone wrong. It’s hard to appreciate what we can’t see, but as an allergy parent, I work overtime and do my best to make certain there is nothing to see.

I don’t ever want to see my child turn blue as his blood pressure drops and his throat tissue swells. I don’t want to see the hives bubble unchecked over his entire body, scalp to toes. I don’t want to see my child go limp as I inject epinephrine and call 911 for a ride to the emergency room in case he experiences a rebound and we need to do a second injection. Many of us have been there and done that at least once. My son was diagnosed at 9 months old when he reacted to infant cereal. I can still remember standing in the ER as the nurse whisked him past everyone else into the back. And so began our education. As a parent, it’s your job to learn quickly and learn well.

As parents, we are successful and triumphant if you don’t see a thing. Seeing nothing is a victory.

One year at our annual allergist visit, my son’s doctor told me we handle allergies very well, that being proactive has had a positive impact on his quality of life.

I believe we all want to do the right thing; we just need the knowledge to make good decisions. So, my son would attend parties. I’d talk with the host beforehand to make certain his food “matched” the others’ as closely as possible. We’d bring allergy-friendly snacks for the entire group. We’d answer questions, demonstrate how to use epinephrine and talk about cross-contamination. While we wouldn’t hide his allergies, we did our best to approach the subject in a positive way, explaining we needed help to keep my son safe and healthy.

And people responded tenfold. If anyone found something free of my son’s numerous allergies, we’d find a package on the porch. Friends were triumphant, bringing treasures they’d found to share.

My son and I tuned into a program on the local radio station that was talking about food allergies. We listened intently, hoping perhaps there was something new to learn. My son was fairly quiet throughout, listening to other people’s experiences. When it finished, we talked. He said, “Mom, I’m glad you never treated me like I was in a bubble. I know what to do, and how to share what I need.”

Years ago, we began a neighborhood tradition at our home, “Gingerbread Night.” In the beginning, when we were few, I’d make allergy-friendly gingerbread houses from scratch for every child. As we grew larger and the entire table filled up and then some, we switched to gingerbread people. We’ve also added a modern twist with a few gingerbread zombies as well.

We provide the gingerbread people and frosting bags full of white icing. Guests provide gingerbread toppings that are allergy-friendly. Each year, there’s a hunt and a challenge to provide something new. Ingredient lists are carefully read. Processing is double-checked to make certain there is no cross-contamination. And happy chaos reigns with bowls of ingredients, ridiculous amounts of frosting, and group-judged and photographed cookies. And lots of milk to wash them all down. Everyone leaves with a basket of cookies and a wonderful memory of our holiday tradition. Neighbors stop me in the street in October to see if we’ve set a date for our can’t-be-missed event. Good friends have moved to Germany, and although they have no allergies, a box of our special gingerbread men will find their way across the ocean to be part of our special day.

While it was more difficult 15 years ago (my son’s first birthday cake was a two-pound block of cheddar cheese with a candle in it), time and repetition have made us all comfortable with our approach. We don’t ever let our guard down; we simply follow the plan. And after a while, people learned there was nothing to see, provided we followed those set rules. And after a while, they started to see a blue-eyed, blond-headed boy, and not “that kid with the allergies.”

The rules set in place all those years ago remain, but they are old hat by this time. We know what to do and how to do it. All of us.

And today, at 15 years old, my little boy stands at 6-foot-2 in his bare feet. His skin is clear, his eyes are beautifully blue, and his golden locks are still curly, albeit a bit darker these days. He is joyful, intelligent and already making plans to drive and thinking about how to deal with his allergies in college, how to budget and how to cook for himself. He has a plan.

And, yes, he has food allergies. He is anaphylactic to wheat, eggs, tree nuts, peanuts and barley. He carries epinephrine 24/7. He wears medical ID dog tags. He totes business cards that list his allergies and his emergency contacts. He is very much aware of his allergies and what they mean.

And we are very happy to say there’s nothing to see here, except a teenage boy much like any other young man on his way to becoming an adult.

Image via Thinkstock.

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pharmacist handing a customer a prescription

To the 'Floater' Pharmacist Who Took a Risk With My Prescription

A few years ago, I was diagnosed with having two food allergies after having mind-blowing migraine headaches for four or more years. After finding out I had an allergy, I, like always, developed some sort of upper-respiratory/sinus infection. My normal staff pharmacist knew I had an allergy and usually picked a manufacturer she was sure did not contain wheat and gluten by-products, but she was on vacation. The conversation I had with a floater pharmacist that day blew my mind.

Dear Floater Pharmacist,

When I saw you checking my script, you looked much younger than me. Quite possibly a baby. But what a sweetheart you were. The tech offered to ring up the prescription, but you declined, saying you wanted to speak with me. Worried, I ambled over to the counter, expecting to find out that the script was not going to be covered by my insurance.

Instead, when you came over, you looked at me with a furrowed brow and asked if I had any food allergies. Surprised, I answered, stating yes, I have two food allergies: gluten and wheat. I was careful about the drugs I was prescribed, knowing that sometimes gluten by-products are used in the production of medication.

She looked at me, looked at the script and said the greatest words I had ever heard: “I thought so.” In your support, you told me how you noticed, when looking at my profile, that most of my medications were in tablet format instead of capsule. However, one of the medications I had been taking recently for an infection was known to contain trace amounts of gluten in the capsule. She proffered me the prescription and said, “I hope you don’t mind, but I exchanged out the drug we would normally dispense with the one I know is free of allergens. It may cost you a little bit more, but it will not cause you to develop any extra symptoms.”

Flustered, I smiled and could only utter out a thank you. I had never met someone, even my own doctor, who thought to look and see if the medication I was being prescribed contained those ingredients. You took initiative and a substantial risk, knowing I may have requested for it to be changed back. But you have no idea how much I truly appreciated it.

So, my baby-faced, rookie floater pharmacist, thank you. You truly show the knowledge of a veteran pharmacist. I wish you the best of luck in your career.


The woman with all the allergies

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