vitamin ingredients including fish oil

EpiPens Are Not Just for Kids


By now, most people have heard about the unconscionable hike in the cost of EpiPens, the emergency epinephrine auto-injectors used by people with severe allergies to stop the swelling of their throats that can kill them if they’ve been exposed to the food to which they’re allergic. These life-saving devices were earning Mylan, the manufacturer of the EpiPen, over a billion dollars a year by the end of 2015. As has been widely reported in the press, the company decided to hike the price of the auto-injector once again this year, just as they have every year since they acquired the patent in 2008. As a business, this is a brilliant profit-making move. They have a virtual monopoly on epinephrine auto-injectors in this country, and as such, Mylan now earns 40 percent of its total profits just from the sale of the EpiPen.

As a mother, I appear to be a good target for Mylan’s marketing efforts, which are well-documented. After all, parents of children with food allergies are constantly worried about the dangers in a world filled with potential allergy triggers. These mothers — wiping down surfaces, bringing “special” cupcakes to class parties, handing specially-printed cards to waiters and walking back into restaurant kitchens to inspect the cooking surfaces just to be sure — are easily convinced to buy one or two extra EpiPens. One for home, one for the car, one for school, one for Grandma’s house…

Mothers do this largely because we cannot trust children to advocate for themselves in the same way we can advocate for them. Children are more often the ones pictured in the ads, like the ones here and here. These hits parents exactly where they are most vulnerable. Mothers, in many cases, will do almost anything to protect their children.

What mothers are not as likely to do is to protect themselves.

In our house, the person most affected by the hike in EpiPen prices is not the child about whom I’ve written thousands of words of worry in my blog and essays, the one who has followed extreme elimination diets and been in and out of the hospital. The person most affected by the hike in EpiPen prices is me. I have a severe allergy to seafood of all kinds. I’ve reacted to shellfish and regular fish. I’ve reacted to cross-contamination in a restaurant, which made my mouth numb and my throat begin to swell, and, in milder form, to the smell of fish cooking, which makes me wheeze.

The worst reaction of all, though, was to a pharmacy store brand of vitamin C, which did not advertise its bonus ingredient of fish oil on the front of the package. All the front of the package said was “Compare to [Brand Name],” a vitamin I’d used many times without issue.

As I clutched my EpiPen in my hand on the way to the hospital, hoping I could make it without having to inject myself, the reason I hesitated was not the cost of replacing it. I was simply worried that the shaking, heart-pounding, and panic would be too scary for my children in the back seat to watch. However, if I had to choose between feeding my children that week and using the EpiPen — which might cost me $600 to replace — I don’t think the decision would have been any different. I probably would hesitate as long as I could before using it. That’s what mothers do: we put our children first.

Yesterday, I went to my allergist for a checkup and to get a refill of my EpiPen prescription. She scolded me about my decision not to use the EpiPen right away when I’d had the reaction to the vitamin. “If you wait too long,” she said, “it might not work at all. That’s far, far scarier.”

She wrote the prescription for the refill in such a way that I could choose a cheaper, generic auto-injector if I wanted, so when I got to the pharmacy, I planned to ask for that. Instead, the pharmacist had already filled the prescription for the name brand.

“Ooooh,” the pharmacist said when she rang it up. “This is really expensive. $280.00.”

“I know,” I said. “And I have great insurance. That Mylan CEO is going to hell. Can I get the generic instead, please?”

The pharmacist paused. “I don’t think there is a generic for this.”

“Yes, there is,” I said. “My doctor wrote the prescription that way. Please take a look.”

She scuttled back to the pharmacy and came out a few minutes later. “Um, I’ll have to call your doctor to get this authorized.”

“That’s OK,” I said. “Go ahead. But really, it should be on the prescription. I saw her type it in when she faxed it to you.”

The pharmacist sighed audibly. She disappeared again, and I could hear her calling my doctor. When she returned, she said my doctor had said it was fine. “But, you know, I don’t think we have any of that generic in stock. We’d have to order it.”

“That’s fine,” I said, mentally deciding not to eat out until I had a new EpiPen in my purse. “Go ahead and order it.”

She disappeared a third time, this time for quite a while. When she returned, she said, “You know, you may as well get the name brand. The generic doesn’t really save you enough to be worth it.”

I was surprised, but asked, “Really? How much is the difference?”

The pharmacist looked at her screen again. “Only $50 dollars less.”

“$50?” I asked, shocked. “That’s not ‘only’ a little! I’ll take the generic.”

For the fourth time, she disappeared back to the pharmacy and came back with another pharmacist. “He says there’s a coupon online for the EpiPen. You can download it to your phone. Do you want to do that? It should save you more.”

“Oh,” I said, swayed by the possibility of paying a similar price for the name brand as for the generic. “OK, I’ll do it.”

I sat down in the chairs to the side of the pharmacy and filled out the forms on EpiPen.com. At the end, an image of a card, front and back, came up on my screen, and I held it out for the pharmacist to scan.

“Wow,” she said. “I can’t believe it. This brings your total down to $0.”

“They’re free?” I said.

And they were. After all that time, back and forth, discussions and asserting myself and standing my ground, I had the name brand EpiPens in my hand at no cost at all. What had just happened? I’ve learned since this discount program Mylan is offering helps Mylan as much as it helped me, according to the Washington Post,

Let’s say you have a choice between the EpiPen, at $300 with the new coupon, and the generic Adrenaclick, which is $140 with its own coupon. You choose the EpiPen… but since the wholesale price of the EpiPen is greater than the generic, the difference will be picked up by employers, unions and government agencies and other insurance providers. That cost will eventually be passed back to you in the form of increased premiums or prescription drug prices.

So, I saved myself $280 yesterday by pushing against whatever incentive the pharmacist had to keep me using the name brand. In the end, though, my insurance is still paying Mylan for their portion of the price, and the cost of this drug will keep getting higher and higher. Some other mom with a fish or peanut or bee sting allergy will stand in a pharmacy and simply shell out the $280 with her hungry toddler standing nearby. She may choose that medicine instead of something else she needs, or she may hear the price and say, “Oh. I can’t afford that. I’m… sorry. Thanks anyway.”

And she’ll walk away.

And her trip to the emergency room when she has her next reaction will cost her insurance company far more than the cost of an EpiPen. Unless, of course, she doesn’t make it to the ER at all.

It’s not just children with allergies being affected by Mylan’s unforgivable greed. It’s entire families. In the end, perhaps the loss of some of their best customers to death by anaphylaxis will be the motivation Mylan needs to lower its prices.

Related: Here’s What You Should Know If You’re Struggling to Afford EpiPens

RELATED VIDEOS

jimmy kimmel at the emmys

Jimmy Kimmel Took a Dig at EpiPen Prices During the Emmys


On Sunday night’s Emmy Awards, host Jimmy Kimmel did a bit with the kids from Netflix hit “Stranger Things,” handing out peanut butter and jelly sandwiches to the audience.

Before getting back to the awards, Kimmel warned, “If you have a peanut allergy, I guess this is goodbye because we could only afford one EpiPen.”

Kimmel’s dig may have seemed quick and little, but he was referring to a massive problem: Since 2007, EpiPen’s wholesale pricing went from $56.64 to $317.82, a 461 percent increase. Some consumers are left paying upwards of $600 for a two-pack (the only way the drug can be sold). When outrage sparked over another price increase this summer, Mylan, the pharmaceutical company that makes EpiPens, announced it is offering a copay assistance program that will take $300 off the price consumers pay for EpiPens. Mylan claims it is also making it easier to qualify for its patient assistance program which provides free EpiPens to under-insured or uninsured families.

“We’re seeing a lot of [people struggling to afford their EpiPens] because of high-deductible [insurance] plans or patients being inadequately insured,” Sakina Bajowala, M.D, told The Mighty earlier this year. “The root cause of this is that Mylan has made the poor decision to jack up prices by hundreds of percents over the last few years.”

Image of an EpiPen

“I think it’s a shame. Patients are struggling with this and doctors are too,” said Jennifer Caudle, D.O., Family Physician and Assistant Professor at Rowan University School of Osteopathic Medicine. “The first thing I thought was ‘Oh my gosh.’ This isn’t Tylenol. This is a life-saving medication. People die every year from anaphylactic shock.”

According to Food Allergy Research and Education (FARE), up to 15 million Americans have food allergies, including one in 13 children under the age of 18. Anaphylaxis is a severe, life-threatening allergic reaction that causes over 300,000 pediatric visits to the emergency room each year. When the signs of anaphylaxis – difficulty breathing, hives, dizziness – occur, timely delivery of epinephrine, the medication in an EpiPen, can be the difference between life and death.

Kimmel’s quip won’t likely be the most talked about joke of the night, but it’s rare that a health story like this gets any kind of mention in primetime television. Now, if only we could get this problem solved.

Related: Here’s What You Should Know If You Are Struggling to Afford an Epipen

mom sitting on floor with two boys in pajamas

The Crucial Point That's Being Missed in the EpiPen Conversation


Before this starts, let me just say. I am, myself, affected by the EpiPen problem. I, too, have noticed the price increases (though luckily our insurance does cover them), and I get “it.” So before the internet “haters” are going to hate, let me be clear, I’m not arguing with you.

Ever since the first EpiPen post came up on one of my social media feeds, it’s just “rubbed me wrong,” and by that I mean it’s made me want to reach through the internet and grab people by their shoulders and shake them until they gain some insight! Here is why.

This is not news! This isn’t some new conspiracy that’s just popped up overnight! This isn’t suddenly a new concept. I believe the problem is not just the cost of the EpiPen, the problem is that the media has let people think that’s the problem, and that it’s suddenly a “new” problem.

The EpiPen price has been increasing over years, not days, as has the price of other rescue meds, daily meds, and medical necessities on the market. All of these items have the potential of being just as life-or-death as an EpiPen, and all of them are way beyond the reach of thousands of people who need them.

I myself have advocated for these issues, and similar ones, since becoming a special needs parent. I also know hundreds of others through special needs networking who have been advocating harder and longer than I have. I’ve experienced the judgement that almost always comes along with advocating. Friends and family of ours who have openly, and not so openly, judged our own advocacy through the last few years and have suddenly posted several of these EpiPen articles and news updates.

On one side of things, this is great. Finally, something has gotten through to the world. All this advocating we’ve been doing while fighting through the judgement is finally paying off. On the other side, it’s beyond upsetting. The world has finally crossed that line into understanding even just a fraction of what the special needs community goes through, and yet they are missing the point.

I believe the problem is not EpiPens. The problem is these policies have been around for so long, and are upheld by such powerful and “popular” people, that nobody has been listening to the minority of us this entire time. I think this could have been fixed long ago if even just a few more people had stopped judging the special needs advocators, and started listening to and supporting them. Tens of thousands of people have been, and still are, drowning in these policies at an even greater cost than a couple of EpiPens.

I’m not saying we shouldn’t fix the EpiPen problem. I’m saying we should start looking at the big picture and fix thousands of problems at once, before it’s too late.

Follow this journey on Extraordinarily Unordinary.

food plate at restaurant

The Hard Truth About My New Dairy Allergy


The day after my birthday at the end of August, I went out for supper with my family at our favorite brew pub in our small town, just prior to a Bluegrass concert we were playing at the Times Square Gazebo. I asked the waitress to exclude dairy from preparing both my food and the food of my daughter’s 15-year-old boyfriend. The young man had been allergic to dairy all his life and knew how to manage it — he never ate when out. I’ve developed a dairy allergy in the last three months after being a happy milk drinker and ecstatic consumer of stinky cheese for almost every one of my 46 years, from breast milk to sheep, goat, cow to mare and camelid.

It wasn’t until I got home that night and felt the rash literally all over my body, that I realized the sheen of oil on the bottom of my plate must have been butter. So that was why I required three different inhalers to play the concert and was breathless by the end! Lucky I didn’t land in the hospital. I’ll be having an uncomfortable discussion with the restaurant owner this evening. I will itch for days despite heavy doses of anti-histamines. I am still in breathing distress.

Most people don’t know this, but you can acquire an allergy at any time in your life, even if you’ve never had one before. Any time your body undergoes a biochemical shift, you can get allergies. The most likely times are the change from infant to toddler, toddler to child, child to adult (puberty), pregnancy, and adult to old age (menopause). I’m undergoing the last shift a bit earlier than most women. I’ve always had allergies, but as they go, my sensitivity to dairy products is among the most severe of them: anaphylaxis. Any time I ingest dairy, the allergy could flare to life-ending proportions. Allergies are unpredictable like that.

The hard truth: If I don’t have a $700 Epi-Pen on me, I could die. 

I have to stop eating dairy. All of it. I don’t look forward to this new way of eating with much enjoyment, to be honest. Some of the things I loved most are lost to me forever. I cried over chocolate and blessedly found a non-allergen substitute. It doesn’t taste very good, but at least it’s chocolate. I’ve cried over Parmesan cheese and triple-cream Brie, over cream-cheese-and-olives and creamed-chipped-beef on toast, which my father taught me to love and I taught my children to love, which have always meant “family” to me. I’ve cried over my secret Bleu cheese salad dressing. I have to do without them. I’ve found myself sitting outside the ice cream shop, after buying my daughter a cone, weeping. I didn’t become a person “of size” by not loving food, not having addictive food behaviors and emotional attachments to food. Eating even a scraping of dairy means a week of tightness in my lungs, throat and chest, and crawling skin. Somehow, I have to do this.

So as my children go back to homeschooling, I’m learning how to eat all over again. I cope with multiple disabilities: two genetic diseases and a congenital defect all of which cause widespread physical pain and fatigue. I can barely cook at home because I don’t have the energy. I can’t eat out now, in terror of inattentive cooks and vastly underpaid food workers. Food labels have taken on a whole new importance, as have complicated chemical names I must memorize with my sieve-like Fibro-brains. I make constant errors and itch nine days out of 10. I was barely coping with my health issues before.

Image of an EpiPen

Here’s What You Should Know If You Are Struggling to Afford Your EpiPen


Several weeks ago I went to fill a prescription for an injectable medication that requires the use of an auto-injector. While it’s not an EpiPen, it’s similar in that the prescription is delivered through a pen-like device. It’s also similar in that the price doesn’t seem to make much sense. With insurance, the medication costs $15. The plastic pen to inject the medication? $180.

While the medication I take greatly improves my quality of life, not filling my prescription isn’t as life-threatening as not getting epinephrine is to a person with severe allergies. So I took the medication cartridges and set out to find a cheaper delivery device.

In the time I spent searching for an auto-injector alternative, the news of EpiPen’s massive price increases broke. Since 2007, EpiPen’s wholesale pricing went from $56.64 to $317.82, a 461 percent increase. As a consumer, the prices you are going to pay are much higher – with some paying upwards of $600 for a two-pack (the only way the drug can be sold).

Update: On Thursday, August 25, Mylan, the pharmaceutical company that makes EpiPens, announced it is offering a copay assistance program that will take $300 off of the price consumers pay for EpiPens. Mylan is also making it easier to qualify for its patient assistance program which provides free EpiPens to under-insured or uninsured families. 

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“We’re seeing a lot of [people struggling to afford their EpiPens] because of high-deductible [insurance] plans or patients being inadequately insured,” said Sakina Bajowala, M.D, a board-certified physician in pediatrics and allergy and immunology practicing in North Aurora, Illinois. “The root cause of this is that Mylan has made the poor decision to jack up prices by hundreds of percents over the last few years.”

“I think it’s a shame. Patients are struggling with this and doctors are too,” said Jennifer Caudle, D.O., Family Physician and Assistant Professor at Rowan University School of Osteopathic Medicine. “The first thing I thought was ‘Oh my gosh.’ This isn’t Tylenol. This is a life-saving medication. People die every year from anaphylactic shock.”

According to Food Allergy Research and Education (FARE), up to 15 million Americans have food allergies, including one in 13 children under the age of 18. Anaphylaxis is a severe, life-threatening allergic reaction that causes over 300,000 pediatric visits to the emergency room each year. When the signs of anaphylaxis – difficulty breathing, hives, dizziness – occur, timely delivery of epinephrine, the medication in an EpiPen, can be the difference between life and death.

“The times where we need this medicine are usually an emergency. If you are thinking of using it, it’s probably an emergency,” Caudle said. “In a situation that’s potentially life-threatening they are great to use. If someone is not breathing or can’t cope it’s great to have something you can easily use.”

For Those Struggling to Afford an EpiPen

For those who want an EpiPen specifically but can’t afford them at their current prices, coupons do exist. There are coupons marketed as zero co-pay coupons, Bajowala said. “However, in reality for many patients, especially ones with high-deductible plans, their co-pay does not end up being zero,” she added. “It simply takes $100 off the out-of-pocket price of the EpiPen two-pack after insurance pays.” For example, if your bill after insurance is $300, you would now owe $200 for each two-pack you purchase.

“For many of my patients, even after the coupon kicks in they still have an out-of-pocket expense of over $400 for each two-pack that they need,” Bajowala explained. “For children, this is especially problematic because they don’t just need one two-pack. They need one two-pack at home, one two-pack at school, they need another two-pack at daycare, another set at grandma’s or a babysitter’s house – and it adds up if you are spending $400 or $500 a pack.”

Mylan, the pharmaceutical company that makes EpiPens, also offers a program which provides low-cost or free EpiPens to people who don’t have insurance. While this can help uninsured patients, it leaves patients who don’t have the best insurance coverage in the lurch, Bajowala explained: “They don’t qualify for the uninsured program, but they don’t have enough insurance coverage to save their wallet from major damage when they do go to the pharmacy.”

“Families simply cannot afford to spend that much money on a medication [when] the expiration date is only a year and they have to replace it every year,” she said. “It’s a very, very expensive insurance policy when they are already spending a lot of money to have health insurance coverage.”

Alternatives to Using an EpiPen

There are other alternatives to using an EpiPen. “When patients have these issues, I offer them a few options,” Bajowala said. One of those options is Adrenaclick, an auto-injector pen that delivers epinephrine, and has generic alternatives. “The only downside is that it does leave an exposed needle when you are finished with the injection, so you have to be a little more careful when pulling out,” Bajowala said. “But the cost difference for some patients can be substantial, saving them hundreds of dollars on the prescription.”

The other option is to use a syringe and draw the epinephrine out of the vial, said Caudle. “One of the things about using a syringe is that there are many more steps,” Caudle explained. “There are two pieces of equipment. You need to use alcohol to wipe off the vial first. There’s a lot more room for error.”

“Epinephrine is not an expensive drug,” Bajowala told The Mighty. “In fact, it’s a very inexpensive drug.” The New York Times reports that 1 milliliter of epinephrine costs less than a dollar in the developing world, and that less than a third of a that goes into an EpiPen. “The cost is coming into the development on the device and marketing of the device,” Bajowala said. “Most of their expense has been marketing rather than really investing in the device itself, because the device really has not changed much over the last few years.”

Syringes, unlike EpiPens, are not expensive. In many states, you can get 1-milliliter insulin syringes without a prescription. Upon learning this was an option, I went to a local pharmacy in New York City, and bought 10 syringes for $5 without a prescription – thus solving my $180 auto-injector problem.

For those interested in using syringes to deliver epinephrine, there are other factors to consider beyond the price of epinephrine and syringes. Studies have shown it takes patients longer to draw-up the appropriate amount of epinephrine and deliver it, Bajowala said. “Parents took approximately 142 seconds to draw-up the appropriate dose of epinephrine. For physicians it was 52 seconds, for general nurses it was 40 seconds, and for emergency department nurses it was 29 seconds.”

Bajowala also advises against drawing up the medication in a syringe ahead of time. “That’s also been researched and unfortunately epinephrine is very susceptible to the effects of visible light on the stability of the medication,” she said. “For it to maintain its effectiveness, it needs to be protected from light and heat. Therefore, drawing it up in advance could potentially degrade the effectiveness of epinephrine.”

“Talk with your doctor first,” Caudle advises. “There are some patients I wouldn’t recommend this for. What I would say is, ‘You really need to talk to your doctor to see what options they have available. As a doctor, I would need to figure out, is the syringe and vial a reasonable option for this patient given their age and type of allergy?”

If you are thinking of using your expired EpiPen, think again. Both Bajowala and Caudle advise against using expired medication. However, if using an expired EpiPen is the only option you have available, it most likely won’t hurt you – but it may not help you either. “We can’t advise our patients to administer expired epinephrine as a first line because there is no guarantee of the stability of the medication in that device.” If the epinephrine in your EpiPen looks discolored or has precipitation, throw it out, Bajowala advised.

“At the end of the day, we need to not have a monopoly in the marketplace,” Bajowala said. “The FDA is going to need to fast-track approval of alternatives for the EpiPen device so there is competition in the marketplace and the price can be driven down to more affordable levels. Having a monopoly in this area has encouraged greed. We need to have more options available and more safe options available.”

kourtney kardashian in an episode about food allergies

The Major Problem With That 'Keeping Up With the Kardashians' Food Allergies Episode


I can’t keep quiet about this. Nor should anyone else in the food allergy community. Action could and will save lives. It’s that serious.

I was watching an episode of “Keeping Up With the Kardashians” with my 10-year-old son. In it, Scott questions Kourtney’s claim that she is allergic to foods such as gluten and milk. His point is valid: she shouldn’t use the term “allergy” if she doesn’t have one. He is lactose intolerant, which he states during the episode, and is frustrated by her flip-flopping allergic status. He understands the severity of food allergies and intolerances, and wants her to stop saying she is allergic when she is not.

Sounds good, right?

Only, he tries to “prove” her wrong — which, if she was really allergic, could kill her.

During the episode, Scott switches out her substitute foods with the real deal. He empties out her dairy-free milk and substitutes it with real milk without telling her. The same with other foods.

I cannot emphasize enough how outrageously dangerous this action is, not only potentially for her (as we don’t know if she truly has an allergy at this point in the show), but for all people in the allergy community, particularly children.

There is complete and total misunderstanding of our community and the severity of life-threatening food allergies. My son is anaphylactic to certain foods, as are other members of my family, including myself. He was horrified watching this. If someone wanted to “test” our allergies, it would kill us. Kill us. Potentially within minutes.

My fear is these actions could be copied. Kids and adults are already bullied and tested on a regular basis without a major TV show advocating for this type of behavior. It’s totally unacceptable. While Scott’s point was valid, airing his actions to prove Kourtney wrong was wrong of epic proportions.

The episode continues, and Kourtney fakes illness from eating the switched foods.  Then she laughs about not being sick with her mother, Kris, while Scott is verbally and visually upset about it. He tries to convey the seriousness of allergies and that her elimination of certain foods is a choice, not an effort to keep herself alive due to an allergy. In his attempt to prove an important and potentially life-saving point, Kourtney concedes to using different language, but calls it “ridiculous” in the process.

The stigma surrounding food allergies and intolerances is everywhere and hard to fight when you are in this community and trying to stay alive every day. We never know if a food has accidental contamination or cross contamination that isn’t labeled. We never know if we could potentially die from eating. Die from eating.

And, for those thinking: “Just use an Epi-Pen like on TV,” they are not a guarantee.  People die each year after using epinephrine. You can never, ever be too safe.

As a family affected by the stigma surrounding our life-threatening allergies, we are begging “Keeping Up With the Kardashians” to create a public service announcement at the end of this episode discussing the seriousness and life-threatening implications of the actions and attitudes within it.

As a family who has experience bullying due to our life-threatening allergies, we are begging the public to use common sense and never try to test someone’s allergies.

We are begging people to become our allies and help us end the stigma and bullying that prevails.

This issue is real.

The potential for death is real.

I can’t sit idle to this issue out of my instinct to protect my children and myself from misunderstanding.

While we applaud Scott for starting a discussion about life-threatening allergies and food intolerances, we have to speak up about the methods used. We have to use our voices to keep this discussion going.

We want people to live with food allergies and intolerances in a properly educated world that supports us.

We need your help to do it.

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