New EpiPen TV ad . . .

[GoingNuts]

Carefulmom, I assumed that that's what they meant.  But it is hardly clear from the commercial (unless it was in the fine print at the bottom that I couldn't read), and not the conclusion that 99% of the viewers would come to.  Very, very damaging, IMHO.

[Mfamom]

Well, I think that even if they are targeting the group who doesn't carry it, there are better ways to give the message and I still think that particular ad didn't really accomplish that anyway. 
I think that a person of AUTHORITY like a doctor heading up the commercial and addressing
why carry it, strict avoidance, that previous reactions don't predict future ones would be a good. 

I still think a lot of this needs to roll back to doctors giving a better education at time of dx.  If I hadn't come to a support board soon after dx, I might not have become as vigilant and educated.  We got our first epi pen prescription in the ER.  The doctor wrote an epi prescription, showed me how to use one, said avoid peanuts and sent me on my way.

Similar scenario when we followed up with allergist.  (this was 11 or so years ago).
I do know that both times we visited Dr. Sicherer, he asked to see our epi pen, had us demonstrate with a trainer, asked a couple questions about lifestyle etc.  In a non threatening/easy friendly way. 
More doctors should do that IMHO. 
Wondering if epi pens are under prescribed or not refilled ?
or is all of this a Branding campaign?  afterall, Epi--pen is sort of like Kleenex, Xerox but maybe they are worried that new devices will be considered so they need to keep the brand alive?
totally rambling now.  sorry


 

[Carefulmom]

Carefulmom, I assumed that that's what they meant.  But it is hardly clear from the commercial (unless it was in the fine print at the bottom that I couldn't read), and not the conclusion that 99% of the viewers would come to.  Very, very damaging, IMHO.

I agree.  Someone outside the food allergy world would never guess that is what they meant.  And I don`t think that is what they meant.  I think the ad must have been written by some advertising person who spent a few minutes researching what an epipen is and was totally ignorant about food allergies.  Now that I have had a few hours to think about it, that is my take on it.

[SilverLining]

Seriously, I think it's good that the commercial got pulled but I really don't feel like cheering about it. This might have actually helped moms who don't have Epi-Pens get Epi-Pens. Now they won't.

Kids without Epi-Pens. Yay.

It's a complicated issue. I hate how our community always makes it so black and white. You're either with "us" or you're not worth saving. I really don't see advocates stepping in and trying to reach these mothers and, as Mylan pointed out in their letter, there are a ton of them.

I don't think that ad would have convinced anyone not carrying an epi-pen for their child to get one.  I know two kids in my son's grade with pa (one is mfa).  Neither carry epi-pens, both allow their kids to eat may contains.  They both feel epi-pen is a great invention, and isn't it great it's so easy to give ....for kids that need it.  You know, kids like the one going to Max's birthday.

Neither would see that commercial and say "Wow!  What a great idea.  I should get one of them."

I have never lectured either of them on why they should do what I do.  Both know if their kids reactions get worse and they need or want help figuring out what's safe, etc., I'm willng to help. 

But, we haven't talked allergies in years.

[socks on a rooster]

Just out of curiosity I did a google search on how to make people care about having diabetes. They are saying the same thing in those forums as we are here. How can I make so and so eat better when he knows he has this health issue? Why does he ignore all the medical advice? How can I make him care?

We all know this population exists. And, I doubt any slick marketing ploy's going to reach them. They simply don't believe_____ (fill in the blank). These people look at advocates sharing information like people peddling a strange cult, and they want nothing to do with it.

It's not illegal not to carry an epi pen, but if parents don't, have been given the proper instruction and consistently engage in risky behaviors, isn't it negligent parenting? How is it any different than letting toddlers swim unsupervised, or allowing young children to cross a busy street by themselves? If a child drowned in a pool and the parent said, "He always swam alone and it's always been fine....until today." We would be horrified. Everyone recognizes it is dangerous--except the parent. Just because the parent didn't believe the danger was real doesn't let them off the hook for acting negligently.

[booandbrimom]

I don't think the comparison to diabetes is valid, because ignoring the disease can result in changes in the body over time. What burns our britches about these mothers is that their kids go swimming, have fun, and almost 100% of the time there are no consequences.

Will this disease ever be truly understood and respected as long as there's a huge number of parents who avoid precautions? Won't we always be seen as crazy as long as they're out there? Mylan's press release said 90% of parents don't carry an Epi-Pen!

If 90% are letting their kids swim and 10% are keeping them out of the water, who looks prudent and who looks crazy?

[Mfamom]

the 90 percent figure is mind boggling. 
I wonder how many of those parents were never issued an epi pen prescription and how many have not refilled etc.
Does 90 percent of parents don't carry epi pen mean they have one, but its in the cabinet at home?

[booandbrimom]

My last blog post does have a link to a better study about moms who don't get prescriptions filled. HMO data is generally very reliable, as it crosses all types of people.

http://foodallergybitch.blogspot.com/2012/04/converting-slacker-allergy-moms.html

If we just keep hating on them, the perception of allergies will not change. Yet the community attitude most of the time seems to be "good riddance - they deserve what they get."

If we keep preaching to the choir, the choir gets anxiety disorders while the church remains empty.

[socks on a rooster]

I don't hate anyone. I pity those people's children. It's like drunk drivers who are LUCKY most of the time, until the spectacular crash that kills someone. I most certainly do not admire them for getting away with it most of the time.

All anyone can do is provide accurate information to them, they have free will to accept or reject the information. If they have mental health issues preventing them from accepting reality I hope they get help. But, the ignorance is bliss method of management only pretends everything's normal.

[Mfamom]

I also don't hate anyone.  I think that my ds leads a very normal life.
I have pretty much stopped advocating/educating some people in my life whose comfort zones/allergy management seems "risky". 
I have pretty well chalked it up to "I tried.  They don't get it.  Move on". 
I generally don't use "scare tactics", but I'll send an article once and awhile that discusses unpredictablity of reactions or a topic that pertains to their objections/justifications for their allergy management.
Sometimes I think it is like seatbelts.  It is PROVEN they help save lives, but still people don't wear them, still don't always make their children wear them.  Its a law that you have to wear one, but people still don't abide by it.
example of someone in my life.  her ds has a reaction at least once a month.  benadryl always works.  same symptoms, itchy mouth, a few hives, coughing, vomiting.  Every time the same.   I realized she thought anaphylaxis is throat closing and I sent her an article about when to use the epi pen.  Another reaction, she still didn't use it.   I sent her notes from my QA with allergist and he talked about using epi sooner than later and why.  Still didn't change anything.
After the child died from Subway, we talked about it in general.  Two months later, we were at a gathering and needed to kill some time.  we went to the mall food court and what did she feed her ds?  A sandwich from Subway.
she's smart.  she has medical people in her family.  she won't change their lifestyle one bit for the allergies though. 
I don't understand why though.
Every time I see a heartbroken parent saying "I didn't know"  I hope its the last one, but it never is.  That's what I don't understand

[CMdeux]

I think, having lived as a member of that community as well, that the comparisons with Type I diabetes ARE valid.
Most of those diabetics that prefer a more laissez-faire approach to management are "fine" for a long time.  They, too, THINK that they are choosing to "not let this thing get to me" or to "live my life anyway."

I think that the underlying psychology is quite similar.  It's a form of denial, in any case.  That part is comparable. But only to a point, because at least everyone diagnosed with Type I diabetes is actually impaired in terms of insulin production. 


The compounding factor here, IMO, is that some of that group really doesn't have the same disorder.  That is, thanks to bad diagnostic criteria, there are probably a fair number of people who are labeled as "FA" and even prescribed injectors-- who really do not have food allergies at all.  Then there are the majority of food allergic people who have relatively high thresholds in this mix, as well.

My DH has a very high threshold for walnuts.  <shrug>  Is he wrong to not carry epinephrine?  Probably not, realistically.  The odds of him actually ingesting enough to cause him to anaphylax are pretty much zero.  He's one of those people who can smell/taste the allergen and he knows the likely hidden sources well enough that he just avoids them completely unless he is 100% confident in the ingredients.   He's never actually anaphylaxed, in spite of his many allergies to a variety of things.  He may not have the genetic potential for it, in all honesty.  There's no diagnostic way, at least currently, to identify those people who are NEVER (well, probably never) going to anaphylax because their immune systems aren't made to do that.  (This is different than component testing a la peanut seed-storage proteins, btw.)

My DD and I are another story entirely; both of us have ample and robust anaphylaxis history.  We both carry epinephrine.

All three of us live in such a way that we're not taking excessive risk-- but DH appears almost unlimited, while I'm definitely more limited in my 'dining out' options, though not much otherwise... and DD is one of the people who looks "crazy" in terms of avoidance. 

Until the public is capable of understanding the nuanced picture that emerges just in looking at the three FA individuals in my own family, there will be problems in the way that the <1 to 5% of people who are/must be as careful as my DD are percieved.

Heck, physicians aren't always sure what to make of the three of us and the story that our anecdotal experience has to tell. 

Point being-- how many people in that HMO sample were diagnosed with a PA on the basis of a high RAST alone?  Does having an elevated RAST to peanut mean that they all NEED autoinjectors?  Probably not.  Estimates are that at least some percentage (20?  30?) of them aren't allergic at all to begin with, and that some other fraction have an allergy to one of the components that doesn't put them at risk of a systemic reaction... and then there are the people like my DH, who would have to literally EAT pb in order to really react.

It's a very complicated picture.  The only really clear thing is that kids who have already had very severe reactions or react to very small traces are likely to be at highest risk.  Beyond that, it's mostly speculation and the picture that emerges, mirage-like, shifts a little with every research study.

[lakeswimr]

I think it is education.  I have met various students who had very wide 'comfort zones'.  I put that in quotes because it isn't a 'comfort zone' if it is based on ignorance IMO.  Several years later I have seen these same students with up to date 'comfort zones' (suddenly carrying epi pens and not eating baked goods from bakeries, now having good emergency plans, etc that they didn't have in the past.)  What changed?  They had serious anaphylaxis that scared them and their parents.  Ditto another mother I know personally.  When her child first reacted I suggested very gently she get epi pens 'just in case'.  One reaction where her child couldn't breath and turned partly blue later and she was a lot more educated and prepared.  Comfort zones differer but I have yet to meet someone who had a child have a *severe* reaction who wasn't trying very hard to not repeat that situation ever again WRT *food allergies*.

However, WRT stinging insect allergies I know plenty who are lax about carrying the epi, particularly if they live in the north where it isn't needed for a good chunk of time each year.  My father hasn't had severe anaphylaxis in over 30 years and is so lax.  I get on his case to carry his epi pens.  One time my brother told me he left epi pens that had long since expired (as in maybe a decade old) in the fridge at my brother's house, 'to keep them save'.  He retains almost nothing of what I say to him about this.  I gave up and focus on having my mother carry for him.  I got stung at their house not that long ago so it isn't impossible.  Luckily he lives in a city with good ambulance service and hospitals close by.

[YouKnowWho]

If they want to focus on those that don't carry - wouldn't it be better to contact those on our "In Memory Thread" and showcase them.

Remind those who think Benadryl will be fine, it's never been serious before, their doctor said they don't need one, they are expensive, etc.

Those are the people they want to reach.

Those are not the parents who won't go to birthday parties because they don't have an epi pen, kwim?

[YouKnowWho]

This is the ad they need to make

Our Children Matter

[CMdeux]

I'm not sure.  I think that Boo's point here is worth considering.

I think that emphasizing the "death" part of things to the parents who are deep in denial tends to just push them further from being able to wrestle that baggage to the ground and come to grips with what, is, when you get right down to it, a VERY frightening thing-- your own child's mortality.

Scaring them further isn't doing it.  That scares them SO much that they'll do pretty much anything to just not think about it-- including not processing anything associated with food allergy as it might apply to themselves.

You can see this in some people-- you can watch them tune you out when it gets too unpleasant for them.  It's as though their brains shut off.  Like an absense seizure or something. 

Those are the people that need to be reached.  They need to somehow internally recognize a message that whispers... "Hmm, maybe this DOES apply to me... I should think about this some more..."

 I'm just not sure that scaring them is working.