Food Allergy Support

http://blog.onespotallergy.com/2012/05/misleading-and-dangerous-epipen-ad-campaign-launched-by-mylan-specialty-continues/comment-page-1/#comment-1008 (http://blog.onespotallergy.com/2012/05/misleading-and-dangerous-epipen-ad-campaign-launched-by-mylan-specialty-continues/comment-page-1/#comment-1008)

The controversy IS very much like abstinence-only education. The "stay pure" (no may contains) message may not actually work, but we can feel good about Mylan promoting it.

All those Epi-Pen-less slacker parents need is more abstinence-only education! Right?

Well, I certainly have fewer issues with this ad than the TV spot.  I think it's a bit clever, actually.  It would be nice if it were so obvious.  Truly.  I'd prefer a flashing neon sign to indicate cross-contamination, myself.  <ahem>

Still...


it is doing mass-marketing promotion of the idea that an epipen is a complete "failsafe" and that life can proceed EXACTLY as it does for everyone else as long as you have on in hand.

This is probably an okay message in a specialty publication like Allergic Living, etc.  In those publications, the general public probably isn't who is reading in the first place.  It bothers me more in a mainstream, broad demographic target like in People.

The reason that it bothers me so much is that this is precisely the attitude that we've been fighting over-and-over-and-over again for over a decade... ignorance...  because the ads are telling others that what they WANTED to believe all along is true!  (Yay, right?)

The thing is, we're really NOT helicopter parents when we won't just "let {DD} carry one of those epipen things and be responsible for herself" in very high-risk environments/events, YK?

Even as an adult, I'm thinking that DD will have the common sense to use the buddy system at those kinds of events-- or avoid them entirely.  She seems to have more sense on this subject than most adults without food allergies do, but the problem is that "risk benefit analysis predicts that the risk here is too high to be worth it even with my EpiPen, but maybe next time!" doesn't fit into a cheery sound-bite or glossy two page ad.

It's just more "Well, just teach your kid what they can't eat, then..." but dressed up under the guise of selling autoinjectors.  I'm pretty sure that Mylan doesn't especially care whether or not this saves lives.  As long as this campaign sells autoinjectors, it's all good, YK?

While we're at it, then, why not a twin ad that has a vomiting child with reddened, teary eyes, looking miserably into the camera, with a tee shirt* that says "This isn't Viral-- Anaphylaxis in Progress."


If only it were so obvious.     :thumbsup: 


(Just saying.)  Because, see, that would also be educational in exactly the same way that this particular print ad is educational.  Yes?  Just a little less appealing.  But hey, it does nicely avoid the issues surrounding whether or not the cross-contamination Nazis or the slacker-livin-my-life parents are the crazy ones.

Because Barfy the wonder kid could belong to either one of them, right?


* late editorial change.  Needs to be written across the hiney of the pair of sweats.  That way the child's head can be in the toilet. 


Snark.  Yes.  This is me, being snarky.  Well, sort of.  I guess I do have some questions about why the birthday cake is "cute/clever" but MY idea isn't.   ;)

the thing I don't like is how some people are "gurus" in the food allergy community and because "they approve" its all good/okay. 
I especially didn't like Nancy's message from annma.org
I appreciate that they are trying to get people to carry epi pens, but why not put out a complete message....avoidance, preparedness, etc.

I have recently seen a tv ad from Dey that does have kids describing their ana symptoms with the voiceover saying that kids die from ana everyday and go to allergic living for a list of questions to see if your child may be at risk for ana and how to protect them.  The ad is running during prime time.  No menion of epis. 

Yes, I saw one of those quite a while back. 

I think that letting people know that HEY, "he just vomits for a few hours" is, um... fairly serious in terms of an allergic reaction  is a responsible and ethically correct tactic. 

People tend to underestimate severity in most allergic conditions-- asthma included.  So that kind of patient education (which avoids the entire lifestyle debate in the first place) is more appropriate, I think. 

Then again, Boo's point about it being impossible to "scare" people motivated is also worth bearing in mind.  At some point (and it isn't the same threshold, I suspect, for everyone) the subject is simply so unpleasant that they will not think about it instead of acting.  That may be an alternative explanation for the studies of behavioral leveraging that show that positive (and superficial) messages that make the action EASIER TO TAKE seem more effective than those that are more serious and factually seem more motivating (gory car crash pictures don't motivate people to wear seatbelts-- social pressure and widespread laws do).

So what best motivates people to carry epinephrine without out-and-out LYING about food allergy?  That's the real question.

This print ad doesn't bother me at all. 

And I'll add, everything I have seen objecting to it, seems to go back to onsepot.  Elizabeth seems to encourage knee jerk reactions.  It's why I chose to "unlike" her fb page.  I have nothing against her personally, and everyone I've heard who ordered products from her is a happy customer.  But, I don't usually agree with the comments made by people on her posts, which often seem to promote the knee-jerk.  This is just my own opinion.

Quote from: SilverLining on May 08, 2012, 06:58:59 AM
...everything I have seen objecting to it, seems to go back to onsepot.  Elizabeth seems to encourage knee jerk reactions. 

She's focused on making money. That means she has to pander. Since I've been blogging, I've been looking at all the "advocates" and "bloggers" who really run side businesses selling holders or bracelets or books. It's amazing how much money underlies our community.

And I feel terrible for Nancy from ANNMA. She gave an honest answer and those girls are gonna to hang her out to dry if she comes back. Charming advocacy!

I think the print add is equally bad to the tv spot.  I think both send the wrong message.  i don't think it is the same as abstinence-only education.  People can have sex pretty darn safely with the use of some protection.  People can't eat who knows what cakes with the same safety.  One is a life or death issue, the other not so much. 

I still think it is an education issue.  The other FA parents in my district for the most part see pediatricians who give them less than complete info about FAs or they see an allergist who isn't very good and so isn't giving them enough info.  These are people who bothered to take their kids to a doctor for allergies and got less info than they needed.  We see people all the time on food allergy message boards who do not know when to epi, who were not given a written emergency plan, who weren't told how to read labels (esp if they deal with non-top 8 but even for top 8), who weren't told basic things and so they don't know these things.  I have a great allergist but even he didn't have time to tell me everything and I had to learn some things the very hard way as a result. 

I know there are parents who don't take proper care of their kids across the board but they are not the majority of parents.  I have seen some shocking things from some parents but even if they are 30% of parents they are not 80% of parents or 90% or whatever that statistic was about people who don't carry epis.  Parents who otherwise are involved, caring parents, I think those people WOULD carry epis if only they had access to the right information and doctors who knew what they were taking about. We still have the majority of ER staff not knowing to give the epi, monitor for at least 4 hours and send the person home with an epi script and these are people telling parents to give benadryl and that the reaction wasn't that bad, etc.  And these people go home believing this.  I have seen this happen to people in my family and to my friends and read countless stories of this and the 2 studies by FAAN back this up. 

We have a vaccination rate of close to 100% in this country.  We have the majority of parents taking their kids to well visits with the pediatrician, for hair cuts, for new clothes, for dental appointments.  This type of parent who does these things would carry the epi, IMO if they knew to do so.  They would not feed bakery cakes if they knew the risk.

I can't count how many people have posted that they used to do all these risky things (have kid eat non-nut varieties of ice cream, bakery cakes, not mention FA to wait staff and restaurants, etc) until they realized it wasn't safe because *no one told them otherwise*.  I remember when DS was small I let him eat baked goods friends made who told me they were allergy-free.  I wouldn't do that now unless it was from someone with very similar allergies and comfort zone.  I also let DS have a bakery cookie once! i wouldn't do that, either.  He had big anaphylaxis at a restaurant because I didn't understand what we were dealing with.  And I was trying to get this info very hard. 

So, I don't know.  For parents who aren't going to take good care of their kids anyway I'm not sure these adds are going to do the trick but they are going to damage others so I don't like these adds and I do not agree that they are going to help the 90% and hurt the 10%. I don't think those numbers are accurate. 

Quote from: lakeswimr on May 08, 2012, 08:26:20 AM
I think the print add is equally bad to the tv spot.  I think both send the wrong message.  i don't think it is the same as abstinence-only education.  People can have sex pretty darn safely with the use of some protection.  People can't eat who knows what cakes with the same safety.  One is a life or death issue, the other not so much. 

I didn't mean that the situations were 100% equivalent. I meant that the advocacy approach is equivalent. Those who believe in abstinence-only education, whether for sex or food allergies, are completely unwilling to consider any other type of education because it trips their moral bells, even if that education might work better.

IMO, this part of our community is just so incensed at these other mothers that we really don't want them having Epi-Pens. They're cheaters! They make us look bad! We hate them! Their kids deserve what they get!

(Whew...time for more coffee.)

Quotei don't think it is the same as abstinence-only education

This isn't an ad by an advocacy group....it's from a for profit business.  They are advertising their product.

If we could absolutely 100% always always alwyas completely avoid our allergens we would not need their product.  But we cannot do that.  Accidents happen, and so we carry our epi-pens with us.

This print ad (to me) shows it more in that light.  maybe there is nobody in the entire world that you trust to cook anything for your child.  (I'm not judging or criticizing...just commenting.)  But, there is someone I trust.  She makes dinners and baked goods and I eat them.  She often calls me to verify what brand of an ingredient is safe.  But, what if.....Brand X used to be safe but no longer is and no warning is added?  She might use that Brand and contaminate the birthday cake she bakes.  Accidental cross contamination....and I'm a very careful person.....but it could still happen.

My concern is self-centered: I want an agnostic approach to epinephrine auto-injector delivery systems, one that leaves market entry open to newcomers with hopefully improved delivery systems and unique form factors that provide better drug stability for longer shelf life or excursions, ease of carry for people who must carry multiple doses for multiple persons or any other improvement/development I haven't covered.

In that regard I have an interest in Dey's ability to report to share owners, i.e., stock owners (of which I was probably one years ago), so that Dey is around to make branded EpiPens - which I currently prefer for the kids. I also have a vested interest in others doing as well so that I have reliable auto injector choices in epinephrine delivery.

The problem is that they're doing it wrong, like incompetently wrong. Yes, while it is theoretically true that any company can internally position a product as anything (hey, it's theory) Dey has chosen an ad campaign that concentrates on repositioning the therapeutic role of epinephrine in allergic disease management rather than their patented drug delivery system. Their brand strength is military grade technology, years on the market, proven reliability, word of mouth evangelism, and increasingly the use of EpiPen to stand in for "epinephrine auto injector" probably because it's a good name EpiPen. Easy to write, say, conveys what it is efficiently. Why this is noticeably absent I can only guess they don't want to acknowledge competitors like Shionogi.

The next issue is that it is a prescription only control usable only by the patient it was prescribed to. If Dey is not hitting the medical side HARD then they are even more incompetent than I currently believe. If the doctors don't believe in prescribing multiple EpiPens for good coverage at home, at school then what exactly do they hope to accomplish by going directly to patients who were told they don't need it. I'd say the bottleneck resides more in the doctors than the patients.

As for the blogs, Facebook groups, etc., no comment. I don't follow them. I do know that E-cue just settled with Pfizer (was it?) and I think cleared their last FDA hurdle. With our needs and our insurance I go through about 20 epinephrine auto injectors a year. Already I've started to mix up what I carry from all Dey EpiPens to include some Twinject. Part of this is form factor, Twinject is smaller even in two doses, and has an opaque carry case to block light. When the card hits the market I'm sure either myself or DH will start carrying one of those as well.

Quote from: twinturbo on May 08, 2012, 09:00:41 AM
Dey has chosen an ad campaign that concentrates on repositioning the therapeutic role of epinephrine in allergic disease management rather than their patented drug delivery system.

...

The next issue is that it is a prescription only control usable only by the patient it was prescribed to.

I don't think they see it that way. Their press release after the first brew-ha-ha was very informative. They said  90% of allergic people do not carry epinephrine. We could quibble with the accuracy of that statistic...but since they do it for a living, I'm gonna assume they're right and the vast majority of allergic people do not.

Would you rather try to keep 90% of a 10% market with new competitors on the horizon, or convert even 15% of an unpenetrated new 90% market?

P.S. And I don't think they're going to put their energies into open-use legislation. That WOULD look self-serving and the advocacy groups (the real ones with money and lobbyists) are moving that along nicely.

What I think about Dey's campaign in action is a statement on the therapeutic role of epinephrine was as a lifestyle drug (again not why their auto injector is better than a competitor) if we're talking about the commercial that was pulled.

What I think about their Dey's numbers is looking at gaining new (white, English speaking, suburban moms?) American customers rather than looking at which segments of their market use EpiPen brand auto injectors and how many which would drive total sales. It's a suicidal move to sacrifice your core heavy users... unless you think they have no choice. I read that they were also going for a larger market presence in Europe, how it's unfolding I haven't seen so I can't compare it to the US.

What I think is ethically challenging and self-serving, if we're going to go there shortly, is the Dey-FAAN corporate partnership which is essentially a marketing outlet. Sorry, ain't nuthin' should be happening "behind the scenes". The last thing I either need or have time for is to resurrect the beaten dead horse of FAAN good FAAN bad so I'm leaving it at that.

My choice in action from here on would be to talk less about Dey in particular to become more agnostic towards auto injectors, examine delivery system choices in pro/con format of Adrenaclick, Twinject, EpiPen and follow E-cue's entry. Maybe look closer at licensed generics.
Considering the same heavy users and believers of epinephrine auto injectors also employ social media that could be a powerful force in change.

I certainly can't related to thinking anyone doesn't deserve epis because they are cheaters and have  hard time imagining anyone thinking that way. 

I just think this is a false dualism.  We don't have to either have factually accurate, positive message adds that encourage proper actions across the board (avoidance and carrying epi pens) or adds that say, 'well, you are going to eat that bakery cake so carry epi pens'.  We can have another type of message that doesn't go for either.  I think the ones I have seen recently where they show people who have some symptoms and encourage people to take the test and talk to their doctor about whether or not they might need and epi pen, the one with the mother sending her child off to school on the bus and saying something like, 'thank goodness for epi pen' are very good ads and don't involve either issue.

I agree with whoever said they don't think epi pen companies are the ones who should be doing advocacy work.  They also shouldn't undo advocacy work as they have with these adds. 

Quote from: booandbrimom on May 08, 2012, 08:32:04 AM

Quote from: lakeswimr on May 08, 2012, 08:26:20 AM
I think the print add is equally bad to the tv spot.  I think both send the wrong message.  i don't think it is the same as abstinence-only education.  People can have sex pretty darn safely with the use of some protection.  People can't eat who knows what cakes with the same safety.  One is a life or death issue, the other not so much. 

I didn't mean that the situations were 100% equivalent. I meant that the advocacy approach is equivalent. Those who believe in abstinence-only education, whether for sex or food allergies, are completely unwilling to consider any other type of education because it trips their moral bells, even if that education might work better.

IMO, this part of our community is just so incensed at these other mothers that we really don't want them having Epi-Pens. They're cheaters! They make us look bad! We hate them! Their kids deserve what they get!

(Whew...time for more coffee.)

I would much rather see an add made by you, Silverlining--'accidents happen and that's why we carry epi pen'.  No matter how careful, accidents can happen.  That's a much better message.

Quote from: SilverLining on May 08, 2012, 08:58:14 AM

Quotei don't think it is the same as abstinence-only education

This isn't an ad by an advocacy group....it's from a for profit business.  They are advertising their product.

If we could absolutely 100% always always alwyas completely avoid our allergens we would not need their product.  But we cannot do that.  Accidents happen, and so we carry our epi-pens with us.

This print ad (to me) shows it more in that light.  maybe there is nobody in the entire world that you trust to cook anything for your child.  (I'm not judging or criticizing...just commenting.)  But, there is someone I trust.  She makes dinners and baked goods and I eat them.  She often calls me to verify what brand of an ingredient is safe.  But, what if.....Brand X used to be safe but no longer is and no warning is added?  She might use that Brand and contaminate the birthday cake she bakes.  Accidental cross contamination....and I'm a very careful person.....but it could still happen.

twinturbo--very interesting posts.  I was struck with the idea that they could and should push for docs to write scripts for multi epis for home, school, etc.  That alone would generate a lot of business.  Insurance companies might revolt, though.

Quote from: booandbrimom on May 08, 2012, 09:28:07 AM

Quote from: twinturbo on May 08, 2012, 09:00:41 AM
Dey has chosen an ad campaign that concentrates on repositioning the therapeutic role of epinephrine in allergic disease management rather than their patented drug delivery system.

...

The next issue is that it is a prescription only control usable only by the patient it was prescribed to.

I don't think they see it that way. Their press release after the first brew-ha-ha was very informative. They said  90% of allergic people do not carry epinephrine. We could quibble with the accuracy of that statistic...but since they do it for a living, I'm gonna assume they're right and the vast majority of allergic people do not.

I would estimate that's an accurate number based on people I know IRL.  Including fa's, insect and latex allergies.  About 90% of the people I know with allergies do not carry an epi-pen.  And those that do, often don't bring them if they don't think they'll need them.  (e.g. not planning to eat)

That 90% doesn't match with people I know.  I think that of people in my father's generation and in my generation or basically anyone over about 20 years old it is probably pretty accurate.  For those who are school aged now with food allergies I don't believe it is that high.  Schools will REQUIRE people to see a doctor and get them many times if the parent says the child is allergic to a food.  They can't accommodate without a doctor's letter or something.  My son's school has had about 1 child out of all FA kids (about 20 total maybe) who say they don't need epis and just use benadryl.  I have worked in lots of different schools and have seen the food allergy info lists and this is similar to what I see at other schools.  There is the occasional child who has benadryl only for a reaction but that's the odd ball and very rare.   

But what about the parents that don't tell that their kids have food allergies or insect allergies or are just under the assumption that a school nurse has blanket meds for everyone?

Let's just say that I know a few people who go by that train of thought.  Wanna know how many of them don't read labels and trust their child's instincts (mouth burning) as the first line of defense?

I know the school populations and the #s on the official school list would easily correspond with expected rates of Fas.  I know there are parents like that but I am not seeing it in the schools where I have worked except in one very poor school but that is more to do with financial reasons and even those kids tend to have epis, just a few more than usually don't or have some weird emergency plan.

Wowza. One of the members of Team Anaphylaxis just posted over in the comments on this blog that Mylan "need people (our children) to go into anaphylaxis." 

Them's fighting words!  :watch:

Gotta go lick my wounds now and try to improve my "capability to discern information and respond in an informed way" so people stop ignoring (most of my) posts. 

It was the "most" that made me so glad I wasn't drinking :coffee:. Just bought a new computer screen.   

Quote from: lakeswimr on May 08, 2012, 10:50:49 AM
That 90% doesn't match with people I know.  I think that of people in my father's generation and in my generation or basically anyone over about 20 years old it is probably pretty accurate.  For those who are school aged now with food allergies I don't believe it is that high.  Schools will REQUIRE people to see a doctor and get them many times if the parent says the child is allergic to a food.  They can't accommodate without a doctor's letter or something.  My son's school has had about 1 child out of all FA kids (about 20 total maybe) who say they don't need epis and just use benadryl.  I have worked in lots of different schools and have seen the food allergy info lists and this is similar to what I see at other schools.  There is the occasional child who has benadryl only for a reaction but that's the odd ball and very rare.   

But, how many kids is there no accomodation and therefore you may know nothing about?  I personally know of several in my son's grade.  they have no epi-pens and never did.  One has never even had benedryl left at school.

I just don't like the message that as long as you have the epi pen, you're good. 
Do you have any idea how long it took me to clarify that to a lot of people in my life? 

lakeswimmer, I'd like to add to my last post....it is very possible you live in an area that doesn't fit the 90% without.  I'm sure it is not the same percentage in every community, and every state.

I've looked at this ad a few times now.  I don't have a major problem with it. I wish they put in "Accidents" happen instead of "life" happens, but I much prefer it over the tv ad.

For those moms who already carry epipens, their allergy management or epi carrying won't change.

For the general non-allergy population, I don't think they're going to spend more than a millisecond on the ad.  I don't think they're going to pick up on the subtle aspects people think this ad implies...that it's ok to eat the cake no matter what...so bring the epipen.  If those actual words were printed, then I'd have a huge problem.  If anything, seeing an ad in print with May Contains and life threatening may add legitimacy in the general population's mind.  Wow? It really can be life threatening?

I don't know how it would affect those moms who don't carry them...it may work on some.

I don't think Dey is out to make kids go into anaphylaxis.  I think many commenters on that blog (I only skimmed the responses) are getting too fired up and people need to step away and cool off.

Quote from: booandbrimom on May 08, 2012, 08:12:43 AM

Quote from: SilverLining on May 08, 2012, 06:58:59 AM
...everything I have seen objecting to it, seems to go back to onsepot.  Elizabeth seems to encourage knee jerk reactions. 

She's focused on making money. That means she has to pander. Since I've been blogging, I've been looking at all the "advocates" and "bloggers" who really run side businesses selling holders or bracelets or books. It's amazing how much money underlies our community.

And I feel terrible for Nancy from ANNMA. She gave an honest answer and those girls are gonna to hang her out to dry if she comes back. Charming advocacy!

Agreed.  And whether I like her statement or not (and I liked parts of it, and not others), there ought to be room for some debate on this one.  This is effectively a debate about comfort zones. 

I'd like to think that I'm not so unbearably petty that I have to force someone whose life isn't so limited (because hey-- not everyone IS allergic to a ubiquitous food, and not everyone is contact sensitive, YK?) into walking in MY shoes just so that I don't look like such a loon. 

I have to stop reading this thread.  I click that link and want to respond.  But, honestly, it's not worth it.

I suspect some of those posting are the same people that sent hate mail to Joel saying they hope his son develops pa.  And I'll bet many had a celebration when his son did develop pa. 

Quote from: CMdeux on May 08, 2012, 01:15:12 PM

I'd like to think that I'm not so unbearably petty that I have to force someone whose life isn't so limited (because hey-- not everyone IS allergic to a ubiquitous food, and not everyone is contact sensitive, YK?) into walking in MY shoes just so that I don't look like such a loon.

I think that's my new favorite quote.

Honestly - the people who think we're crazy are ALWAYS going to think we're crazy. It's taken me years and years to get there, but it's so freeing once I did. Mylan's ads aren't going to help or hurt that, so more power to them if they want to get more Epi-Pens in mothers' hands, regardless of how they do it.

Food allergies are an individual disease. When it comes to walking in each other's shoes, we're all Cinderella.

Quote from: SilverLining on May 08, 2012, 01:37:07 PM
I suspect some of those posting are the same people that sent hate mail to Joel saying they hope his son develops pa.  And I'll bet many had a celebration when his son did develop pa.

I did nominate him for a Bitchie Award. Not because his son is PA, but because he made a point of telling all us crazies that he's NEVER going to send his kid to a nut-free school. If I've learned anything during this crazy journey, it's never say never.

He lost to Myley Cyrus though: "Gluten is CRAPPPP."

But boo....were you happy his kid had an allergic reaction?  Had you wished it on him?

I don't think so.

Quote from: booandbrimom on May 08, 2012, 09:28:07 AM


I don't think they see it that way. Their press release after the first brew-ha-ha was very informative. They said  90% of allergic people do not carry epinephrine. We could quibble with the accuracy of that statistic...but since they do it for a living, I'm gonna assume they're right and the vast majority of allergic people do not.

I am woefully behind in this thread - hope to have time to catch up if I get a day off on Thursday.

But - just had to respond here.  I meet an astonishing number of people who have FA's , insect allergies and drug allergies who do not carry epi.  I work with several of them - all health professionals.  ~)  And it's not just them, but some of their children.  And yes, all have been formally diagnosed.

True story - my friend's DH did have an epi, but used to leave it in the car.  As in, for years.  One night she came home and he was in bed at 6 PM, unresponsive.  He had been stung by a bee and decided to just come home and "sleep it off".  She called an ambulance, and fortunately, he was OK.  You would think he would have seen the light after this incident, but you would be wrong.  He was DS's baseball coach, and was always out there in the field that was filled with clover and the accompanying bees.  Without his epi.   :disappointed:

I have no doubt that their 90% estimate is correct.

yeah, my nephew has bee sting allergy, but pretty much refuses to carry epi pen
my ds friend's dad has bee sting and when my ds realized he doesn't have an epi pen, ds wanted to give him one for his birthday. 

you have to wonder.  do people really not "get it" that not having an epi pen is risky?  or do people just think they will be okay? 

Quote from: SilverLining on May 08, 2012, 03:45:30 PM
But boo....were you happy his kid had an allergic reaction?  Had you wished it on him?

I don't think so.

I don't think I hate anyone enough to wish this life on them. No melodrama...just think that's a horrible thing to do. When I heard his kid had an allergy, I was very sad for them.

Cassandra Stein must truly be a saint.

Quote from: booandbrimom on May 08, 2012, 03:34:27 PM

Quote from: CMdeux on May 08, 2012, 01:15:12 PM

I'd like to think that I'm not so unbearably petty that I have to force someone whose life isn't so limited (because hey-- not everyone IS allergic to a ubiquitous food, and not everyone is contact sensitive, YK?) into walking in MY shoes just so that I don't look like such a loon.

I think that's my new favorite quote.

Honestly - the people who think we're crazy are ALWAYS going to think we're crazy. It's taken me years and years to get there, but it's so freeing once I did. Mylan's ads aren't going to help or hurt that, so more power to them if they want to get more Epi-Pens in mothers' hands, regardless of how they do it.

Food allergies are an individual disease. When it comes to walking in each other's shoes, we're all Cinderella.

Awww-- thanks. 
:yes:


Those of us who are-- er, "lucky" enough to have multiple generations/family members with varying food allergies know this one.  Management is highly individual because the condition is, too. 

As noted before, this is one that we live every day in our house.  My DD and I both have to be a lot more cautious than DH does, in spite of the ubiquity of his allergen (soy) relative to ours.  It's a matter of sensitivity and threshold in our specific circumstances.  Another family might have exactly the opposite situation, with a PA child who is far less limited than a soy-allergic parent.

  There isn't anything wrong with how any of the three of us manages, but it sure looks dramatically different to outsiders.    It has to be confusing to them, I think.  We're like the three bears.   ;D DH seldom mentions his FA in a restaurant, (though he's VERY careful what he eats when out, and avoids high risk items completely), and DD's allergies are so limiting that she's never set foot in our local schools and has eaten in only a small handful of restaurants in her entire life.  I'm somewhere in between those two extremes.  It's as though calling us all "food allergic" is ludicrous, since there really ought to be two or even three different terms.

I think this leads us to be a little more forgiving of ignorance in others.  People really can't know what they don't know, in some ways.  If they've seen "food allergy" equal my DH's reality, they can't really understand what my DD's reality is in that context.  Seeing/experiencing is truly believing.  I would have been skeptical, too.   I'm oddly glad for Joel Stein himself, in that he's learned something by walking a mile in the shoes of those he dismissed as crazy... but I'm certainly not glad for his child, nor would I really have "wished" this on anyone's family. Mostly I'm terribly sad for them, and to have the diagnosis play out amidst that kind of publicity and eating a heaping plate of crow must have been truly god-awful.

And amen to never saying "never" with this thing.  I've felt off-balance for a decade and I've finally decided that I'm just never going to be that sure of myself again.  LOL.

I've known those medical people that seem to have profound cognitive dissonance at work, too.  I'm not sure how to reach those people.  Because they already "know" in the hypothetical sense, but they've based their decision-making on some form of denial that I can't quite wrap my head around.  So I'm not sure that there is a good way to break through that without making them uncomfortable.  They've constructed a world-view in which they are "not like those people" despite all evidence to the contrary, and they can rationalize (or just deflect/avoid) endlessly to just not face the reality that they ought to be carrying emergency meds.  That would be admitting that they are like "those" people.  KWIM?

It's the same logic that some people use to avoid recieving public assistance even while your kids are hungry.  As long as you avoid thinking about it, you can avoid facing the fact that you ARE one of those "unfortunate" people.  There's some really interesting psychology surrounding this, for sure. 

I'm curious to know what your take on that strange quirky thought process is, Boo.

Quote from: Mfamom on May 07, 2012, 07:44:53 PM
I appreciate that they are trying to get people to carry epi pens, but why not put out a complete message....avoidance, preparedness, etc.

Q:  Why not?

A:  Because Mylan is not in the business of selling avoidance or true preparedness.  They are in the business of selling Epipen Jr. and Epipen.



;)

You know, I've thought a lot about what I would do if I were that Mylan brand manager. (I'm connect to the guy in about 20 different ways on LinkedIn...) I just don't have an answer. This is a really, really hard marketing puzzle to crack. That's why I suppose I'm willing to give Mylan more leeway. My guess is that they've done quite a bit of market research already and, for whatever reason, this message at least partially works.

It's taken me a while to realize that the reason it probably doesn't bother me is that I *have* written other people off when it comes to social judgment. Now it's just about getting what we need and not investing emotionally in others. Of course, my kid is older -- I certainly didn't feel that way during grade school, when parents were still picking sides. (Incidentally, one of the top search term is that brings people to my blog is "crazy peanut allergy parents." Wish I were kidding.)

I do think skipping the Epi is not about expense or hassle. I think it's about that coolness thing. My SIL has a bee sting allergy. She's been to the ER at least twice that I know of, and yet she wouldn't be caught dead carrying an Epi-Pen. (Bad expression?) She's very, very cool. Her kids are not wussie.

I wish there wasn't such an association between food allergies and WIMP, but there just is. I watched a re-run from "The Big Bang Theory" last night where they essentially set Howard up as a big wuss because of his peanut allergy. How do you fight that? Can you blame people for wanting to keep an allergy quiet and saying things to the school like "my child is not that allergic"? I wonder sometimes which is really more risky: the possibility of an allergic reaction or the outcome of the stigmatization and bullying. 

And I suppose that's why I've stuck with the blog, despite some rather nasty feedback. I'm not going to judge parents who choose not to go all-out with precautions. Someone called me divisive for trying to give them a voice, but the truth is we're already divided. It's just that the 90% don't post on chat boards. They're busy trying to pretend we don't exist.

I do think in-your-face advocacy and one-size-fits-all solutions are the wrong approach. It will make us look even crazier. But what do I know? The woman from Anaphyaxis 911 says she speaks for the food allergy community - does she? Is the definition of the food allergy community only those parents who practice Total Avoidance with capital letters and carry epinephrine? Should we just write off everyone else?

I don't think so.  I think there is a cumulative effect from the media on how people with FAs and their families are perceived and that this will add to that in a negative way.  Is it the worst thing ever?  Is it on par with the bashing articles and the things like Mr. Stein's article?  Not by a long shot in that sense.  But it is very serious in that I think it could cost some people their lives rather than that it will save any of the lives of those who don't already have an epi pen.  Having an epi pen alone isn't really enough, anyway.  One has to know not to put it in the fridge, leave it in the car, how to use it, when to use it.  Those people who don't carry are going to hold off unless things are very dire and by then who knows.  I personally think this is a more harm than good ad campaign. 

The #s are very, very different for adults than they are for kids.  I can't believe 90% of children under 20 who have epi scripts don't fill them.  I can believe that a high % over 20 don't. 

Quote from: booandbrimom on May 08, 2012, 03:34:27 PM

Quote from: CMdeux on May 08, 2012, 01:15:12 PM

I'd like to think that I'm not so unbearably petty that I have to force someone whose life isn't so limited (because hey-- not everyone IS allergic to a ubiquitous food, and not everyone is contact sensitive, YK?) into walking in MY shoes just so that I don't look like such a loon.

I think that's my new favorite quote.

Honestly - the people who think we're crazy are ALWAYS going to think we're crazy. It's taken me years and years to get there, but it's so freeing once I did. Mylan's ads aren't going to help or hurt that, so more power to them if they want to get more Epi-Pens in mothers' hands, regardless of how they do it.

Food allergies are an individual disease. When it comes to walking in each other's shoes, we're all Cinderella.

I think there are different ways to look at the group who doesn't carry.  The idea that they won't carry even though they know the risks almost sounds like a judgement they at least a good % are *stupid* and *negligent*. I'm sure some are but I don't think that is true of most.  I sound like a broken record but I think for many it is lack of education.  And for those over 20 they didn't get the right info and have lived all these years doing things a certain way.  It has worked so far.  My thoughts on asthma control are outdated because i grew up before current standards of treatment existed.  I luckily fit into a category where my way of handling my almost non-existent asthma is OK per my allergist but if my asthma got worse I would feel resistant to changing how I handle it *because I'm used to living the way I have all my life*.  I know the same is true for others who have ana allergies and should carry epis.  They have been fine so far and don't have the same concepts about anaphylaxis that those who are younger or have younger kids and got good info from docs do. 

I think Mylan should make ads that encourage people to carry epi pens, that encourage those who may have FAs to see an allergist or at least a doctor of some sort, that make carrying an epi seem like no big deal. 

Quote from: booandbrimom on May 08, 2012, 05:17:26 PM
You know, I've thought a lot about what I would do if I were that Mylan brand manager. (I'm connect to the guy in about 20 different ways on LinkedIn...) I just don't have an answer. This is a really, really hard marketing puzzle to crack. That's why I suppose I'm willing to give Mylan more leeway. My guess is that they've done quite a bit of market research already and, for whatever reason, this message at least partially works.

It's taken me a while to realize that the reason it probably doesn't bother me is that I *have* written other people off when it comes to social judgment. Now it's just about getting what we need and not investing emotionally in others. Of course, my kid is older -- I certainly didn't feel that way during grade school, when parents were still picking sides. (Incidentally, one of the top search term is that brings people to my blog is "crazy peanut allergy parents." Wish I were kidding.)

I do think skipping the Epi is not about expense or hassle. I think it's about that coolness thing. My SIL has a bee sting allergy. She's been to the ER at least twice that I know of, and yet she wouldn't be caught dead carrying an Epi-Pen. (Bad expression?) She's very, very cool. Her kids are not wussie.

I wish there wasn't such an association between food allergies and WIMP, but there just is. I watched a re-run from "The Big Bang Theory" last night where they essentially set Howard up as a big wuss because of his peanut allergy. How do you fight that? Can you blame people for wanting to keep an allergy quiet and saying things to the school like "my child is not that allergic"? I wonder sometimes which is really more risky: the possibility of an allergic reaction or the outcome of the stigmatization and bullying. 

And I suppose that's why I've stuck with the blog, despite some rather nasty feedback. I'm not going to judge parents who choose not to go all-out with precautions. Someone called me divisive for trying to give them a voice, but the truth is we're already divided. It's just that the 90% don't post on chat boards. They're busy trying to pretend we don't exist.

I do think in-your-face advocacy and one-size-fits-all solutions are the wrong approach. It will make us look even crazier. But what do I know? The woman from Anaphyaxis 911 says she speaks for the food allergy community - does she? Is the definition of the food allergy community only those parents who practice Total Avoidance with capital letters and carry epinephrine? Should we just write off everyone else?

Quote from: SilverLining on May 08, 2012, 06:58:59 AM
This print ad doesn't bother me at all. 

Agreed. What I get from it is acknowledgement that sometimes living with allergies involves calculated risks, not "You can eat anything if you carry an epi-pen." Frankly, that's a message I'd like to see more: particularly as kids with allergies grow up, the idea of informed decision-making becomes much more applicable to their lives than uniform, blanket precautions.

Frankly, most people with LTFA will, at some point, make a stupid decision or take a calculated risk--and even extreme, highly-conscientious avoidance isn't a guarantee. EVERY precaution we choose to take--or skip--is a matter of playing the odds; and some people will always play more conservatively than others. Frankly, it's nice to see an ad acknowledging the extent to which ever one of those choices is a gamble.

I just wish that the message wasn't put forth in a way that could translate to Eat that Cake with Who knows what since you have your epi pen you're good.

I have a person in my life who lives just this way.  Any time I try to say "maybe the toppings at the make it yourself place aren't such a good idea since there are peanuts, walnuts and other stuff in the bins right next to the gummy bears?"  Oh, I have the Pen. 
This ad seems to reinforce this message. 

Quote from: ajasfolks2 on May 08, 2012, 05:12:31 PM

Quote from: Mfamom on May 07, 2012, 07:44:53 PM
I appreciate that they are trying to get people to carry epi pens, but why not put out a complete message....avoidance, preparedness, etc.

Q:  Why not?

A:  Because Mylan is not in the business of selling avoidance or true preparedness.  They are in the business of selling Epipen Jr. and Epipen.

Ajas, I've wondered all day since I saw that post from your compatriot. Do YOU agree that Mylan wants kids to go into anaphylaxis so they can sell more pens?

I think it is so funny thinking that carrying an epi pen is considered "uncool".  I think it is a combination of things.  You would think that when your child is dx with a food allergy or you've witnessed them during a reaction, your instincts to protect would kick in. 
I think back to when my ds was born.  I read every book about babies, read every manual for carseats, made it my business to know how to take care of my baby.
My friend had a baby same time.  She never put the handle down on the infant carrier when she put him in the car.  A segment was on about it in the news where a baby had died or something.  She still never put the handle down.  not because she didn't love her kid, I don't know why she didn't act on the information she had.
We see parents who love their kids not insist on them wearing seatbelts or bicycle helmets.  They know it is a law (both) but they don't act on the information. 
Maybe just human nature, IDK

Quote from: Ra3chel on May 08, 2012, 05:56:18 PM

Quote from: SilverLining on May 08, 2012, 06:58:59 AM
This print ad doesn't bother me at all. 

Agreed. What I get from it is acknowledgement that sometimes living with allergies involves calculated risks, not "You can eat anything if you carry an epi-pen." Frankly, that's a message I'd like to see more: particularly as kids with allergies grow up, the idea of informed decision-making becomes much more applicable to their lives than uniform, blanket precautions.

I think about this all the time. There's no guarantee because I deal with allergies one way that my soon-to-be-emancipated child will deal with them the same way. There comes a point where they have to own the risk.

The worst case would be that my over-reaction is programming my kid to under-react. I hope I've struck the right balance...but I won't know until he's out there.

Well, people who are objecting to the "let them eat cake" aspect of the ad.....do your kids EVER eat in a restaurant, take out, etc.  EVER

Cuz, if your child EVER eats food in a place like that, it is the equivalent of eating the cake.  Both are things that you can speak to whoever prepared it and make a decision.  And both can result in an inaccurate reply.

Would you feel better about the ad if the picture were a restaurant?  And what food should be served?  I think the cake works.

I think the cake is a sore spot with a lot of us because that type of food seems to be higher risk and because of the homebaked/bakery crap we see in school. 

and all the moms who swear it is peanut free because she used betty crocker and the eyerolls when we say "thanks, but no thanks". 

That's my thoughts about why the cake is such a sore spot.

Quote from: lakeswimr on May 08, 2012, 05:28:21 PM
<snipped>
I think Mylan should make ads that encourage people to carry epi pens, that encourage those who may have FAs to see an allergist or at least a doctor of some sort, that make carrying an epi seem like no big deal. 
</snipped>

I think that this was precisely the intent of the TV spot.  I'm just not sure that this is a good idea when you look at the practical aspects of that approach.  It is kind of a "big deal" to go to the ER. :-/

Quote from: Mfamom on May 08, 2012, 06:54:27 PM
I think the cake is a sore spot with a lot of us because that type of food seems to be higher risk and because of the homebaked/bakery crap we see in school. 

The higher risk is why I think it's the most appropriate food for the ad.

I had initially thought a cupcake would have been better for the ad....decided no beause of the school crap.

It may be only if you have talked with the person who made the cake in detail about the child's allergens and how to prevent x-contam, read ingredient lists, etc as people usually do when eating out with FAs.  That's not the scenario I"m imagining. I'm thinking it is a person who thinks that *cake* isn't likely to contain, say, peanuts or tree nuts or whatever and just lets her child eat it or asks, 'there aren't any nuts in there, are there?" and gets a 'no' and lets her child eat it.  Not the same at all as eating out in a restaurant after asking about x-contam, ingredients, etc. 

Quote from: SilverLining on May 08, 2012, 06:47:13 PM
Well, people who are objecting to the "let them eat cake" aspect of the ad.....do your kids EVER eat in a restaurant, take out, etc.  EVER

Cuz, if your child EVER eats food in a place like that, it is the equivalent of eating the cake.  Both are things that you can speak to whoever prepared it and make a decision.  And both can result in an inaccurate reply.

Would you feel better about the ad if the picture were a restaurant?  And what food should be served?  I think the cake works.

I would feel better if the ad did not imply that it's normal to just play Russian roulette which is what the ad implies--that it is also no big deal to do so.  I would rather the ad say something like, 'even when we are careful reaction can happen' or something like that.  The ad implies it is OK to eat a cake that might have x-contam or whatever without asking about this and without knowing for sure but not to worry--you have epi pen.

Yes, and there are other ways to show this idea.  We don't need to encourage the idea that it is OK to eat mystery food in the process.  I like a lot of the other ads I have seen lately. 

Quote from: CMdeux on May 08, 2012, 06:59:29 PM

Quote from: lakeswimr on May 08, 2012, 05:28:21 PM
<snipped>
I think Mylan should make ads that encourage people to carry epi pens, that encourage those who may have FAs to see an allergist or at least a doctor of some sort, that make carrying an epi seem like no big deal. 
</snipped>

I think that this was precisely the intent of the TV spot.  I'm just not sure that this is a good idea when you look at the practical aspects of that approach.  It is kind of a "big deal" to go to the ER. :-/

Quote from: booandbrimom on May 08, 2012, 06:27:57 PM

Quote from: ajasfolks2 on May 08, 2012, 05:12:31 PM

Quote from: Mfamom on May 07, 2012, 07:44:53 PM
I appreciate that they are trying to get people to carry epi pens, but why not put out a complete message....avoidance, preparedness, etc.

Q:  Why not?

A:  Because Mylan is not in the business of selling avoidance or true preparedness.  They are in the business of selling Epipen Jr. and Epipen.

Ajas, I've wondered all day since I saw that post from your compatriot. Do YOU agree that Mylan wants kids to go into anaphylaxis so they can sell more pens?

Ajas?

I'm having a lot of fun with that thread over there, but it's a serious issue. Is Team Anaphylaxis really on board with believing Mylan is intentionally harming children?

Quote from: SilverLining on May 08, 2012, 06:47:13 PM
Well, people who are objecting to the "let them eat cake" aspect of the ad.....do your kids EVER eat in a restaurant, take out, etc.  EVER

Cuz, if your child EVER eats food in a place like that, it is the equivalent of eating the cake.  Both are things that you can speak to whoever prepared it and make a decision.  And both can result in an inaccurate reply.

Would you feel better about the ad if the picture were a restaurant?  And what food should be served?  I think the cake works.

Or manufactured food. Or. Or.

The point is: Calculated risks. EVERYTHING. Especially for those of us whose allergies didn't come as a static set.

I think it's not only okay but important to acknowledge that.

Yes, I was thinking manufactured food too. 

I read labels and I call companies....and still I've been caught on occasion.

I really really don't understand these Team Anaphylaxis people.

They complain to the company that they should be teaching absolute avoidance.

Then they say a for-profit should not be teaching the how-to's of living with allergies.

MAKE UP YOUR MIND.

They have every right to advertise their product.  It's legal.  And, soon there will probably be another competitor in the market.

So, TA, decide whether you want them educating or not and stop flipflopping like a fish out of water.

AND, please DO NOT say you speak for the allergic community.  As far as I'm aware, you are self-appointed.  And the majority of people you hear from are the OMGTHEYCAN'TDOTHAT people who jump on every allergy wagon that travels past them.

I am NOT saying none have valid opinions and comments.  I am only saying you are hearing from only a small number of people....and that does not give you the right to say you speak for an entire community.

I see Elizabeth at OneSpot deleted the entire conversation between me and the woman from Team Anaphylaxis. She also sent out an advertisement for Allerbling on Twitter today.

~)

What a f***d up community we have. That's why I take screen captures of absolutely everything now.

Just lowers my respect for her and the team.

Who runs Team Anaphylaxis? Call me stupid, but for some reason I thought it was a person from here.

Found the answer:
https://sites.google.com/site/teamanaphylaxis/about-me (https://sites.google.com/site/teamanaphylaxis/about-me)

Quote from: DrummersMom on May 09, 2012, 02:41:37 PM
Who runs Team Anaphylaxis? Call me stupid, but for some reason I thought it was a person from here.

No.

One of our committee members has had a relationship with Team Anaphylaxis, but that person's role has been very minimal in the past few months, and the person has also elected to resign from that position.  I gather that this is the result of "philosophical differences" as much as it is a lack of time, which has been a factor for some time.

The FAS committee and administrators have been aware of this person's involvement with TA from the beginning.  We do (all five) make a VERY concerted effort to disclose potential conflicts of interest to the other four people and answer any and all questions that they have.  Just noting that.  I'm not saying that we don't make mistakes-- but we are very conscientious, and we take very very seriously the notion that FAS is a free-to-everyone resource, and a not-for-profit one.

AdminCM, thanks for clarifying.

Sure thing.  Thank YOU for asking directly.   :yes:

I don't understand what you mean.  Eating a cake that someone else made or a bakery cake is a way higher risk than eating manufactured food that reads as allergy-free.  For one you have a food label and may have called the company even. For the other it is literally russian roulette.  I'm not seeing these as the same in any way.  The fact that I buy some processed foods doesn't mean I am going to let my son eat that birthday party cake someone else serves.  What am I not seeing? 

Of course there is always a risk but the risk of my son eating food that I have researched is quite a bit different than taking a chance on a total unknown or *very high risk food*. 

Quote from: Ra3chel on May 09, 2012, 12:36:48 PM

Quote from: SilverLining on May 08, 2012, 06:47:13 PM
Well, people who are objecting to the "let them eat cake" aspect of the ad.....do your kids EVER eat in a restaurant, take out, etc.  EVER

Cuz, if your child EVER eats food in a place like that, it is the equivalent of eating the cake.  Both are things that you can speak to whoever prepared it and make a decision.  And both can result in an inaccurate reply.

Would you feel better about the ad if the picture were a restaurant?  And what food should be served?  I think the cake works.

Or manufactured food. Or. Or.

The point is: Calculated risks. EVERYTHING. Especially for those of us whose allergies didn't come as a static set.

I think it's not only okay but important to acknowledge that.

The point is that you've assessed "how well do I trust the source of this information to be HONEST" in both instances.

Your assumption (unstated) is that another parent or friend or family member is less likely to be fully forthcoming (or knowlegeable?) than a CSR for a company.  That may not always be true.  I've been burned by processed food about as often as I've been burned by restaurant food, and far less than I've been burned by friends and family that I trust to cook for me.  That's my anecdotal experience, and I realise that it may not apply to anyone else with a SFA, nevermind any other food allergy.

Which is the point, when you get right down to it.  BOTH things are risks.  One is (presumably, as noted) lower than the other, and some risks we decide are NOT WORTH TAKING... but what right does any person have to tell others which risks are "okay" for themselves and which are NOT?

We don't.  Not unless it is also okay for others to tell US which risks we're "overestimating."  You and I, for example, have radically different opinions on the trustworthiness of Kraft/Nabisco.  Which of us is "correct" in our opinion of them?  Both of us, right?  We do what is right for us, and you do what is right for your own family.  As long as we're both avoiding reactions fairly successfully, maybe we're each correct-- you for their sesame policy, and us re: disclosure of shared processing with pn/tn.   

Is it okay that different people evaluate risk and benefit differently?

I think that it is.   :thumbsup:

QuoteEating a cake that someone else made or a bakery cake is a way higher risk than eating manufactured food that reads as allergy-free

Do you mean the label actually says "<allergen> free" or do you mean the label doesn't list a may contain warning for a specific allergen?

If I only ate food that actually says "sesame seed free" on the label, I wouldn't be able to buy anything.

So, I trust some companies to label well.  And, occasionally I end up having a reaction.  And I trust some people to cook for me.  They verify brands, and they understand about cross contamination.  I don't see that as any riskier then trusting a company to list "may contains" because sometimes when you go through detailed questions with a CSR....well sometimes you find out they don't have separate facilities or separate lines.  No laws about labeling really sucks.

And, as for restaurants, I see them as a higher risk then either processed foods or the few people I trust.

My new ad copy for Mylan:

Epipen:

for when "all you can eat seafood buffet" isn't saying much.

:thumbsup:

Quote from: booandbrimom on May 09, 2012, 09:25:05 AM

Quote from: booandbrimom on May 08, 2012, 06:27:57 PM

Quote from: ajasfolks2 on May 08, 2012, 05:12:31 PM

Quote from: Mfamom on May 07, 2012, 07:44:53 PM
I appreciate that they are trying to get people to carry epi pens, but why not put out a complete message....avoidance, preparedness, etc.

Q:  Why not?

A:  Because Mylan is not in the business of selling avoidance or true preparedness.  They are in the business of selling Epipen Jr. and Epipen.

Ajas, I've wondered all day since I saw that post from your compatriot. Do YOU agree that Mylan wants kids to go into anaphylaxis so they can sell more pens?

Ajas?

I'm having a lot of fun with that thread over there, but it's a serious issue. Is Team Anaphylaxis really on board with believing Mylan is intentionally harming children?

Pardon my slowness in responding.  (ETA -- when our usernames are posted here, it does not, unfortunately, send a note to us like Facebook can to notify that you've been "addressed".  So, as I've maintained for more than a decade now, if you NEED to reach me directly or get me back into a particular thread, please PM me.  Now more than ever!)

boo,

First, the comment I believe you are referring to was not made by me and did not speak for me.  Additionally, I do NOT agree with that comment about Mylan.  Technically, yes Mylan would "need" there to be anaphylaxis in existence in order to justify their product and continue its existence.  But I certainly would not claim that Mylan -- or any company for that matter -- would WISH anaphylaxis on anyone so to perpetuate its product.

Second, I am not sure I even saw all of the comments posted at the end of that blog, so it will be hard to comment on much/all.  (Honestly, I don't have the time or inclination.)  It appears that there has been some deletion of the comments at that blog as there were some I did read that are now gone, including some of yours boo?

Thank you for answering. :)

Quote from: AdminCM on May 09, 2012, 02:55:06 PM

Quote from: DrummersMom on May 09, 2012, 02:41:37 PM
Who runs Team Anaphylaxis? Call me stupid, but for some reason I thought it was a person from here.

No.

One of our committee members has had a relationship with Team Anaphylaxis, but that person's role has been very minimal in the past few months, and the person has also elected to resign from that position.  I gather that this is the result of "philosophical differences" as much as it is a lack of time, which has been a factor for some time.

The FAS committee and administrators have been aware of this person's involvement with TA from the beginning.  We do (all five) make a VERY concerted effort to disclose potential conflicts of interest to the other four people and answer any and all questions that they have.  Just noting that.  I'm not saying that we don't make mistakes-- but we are very conscientious, and we take very very seriously the notion that FAS is a free-to-everyone resource, and a not-for-profit one.

Just bringing this forward to say this is correct and


Thank you.   :smooch:

a whole lot more people have ana from things like eating bakery bday cakes and than from eating things that they bought themselves from companies they trust and products they have label read.  There is a risk that when I walk across a semi-traveled cul-de-sac of being run over but it is a lot less than walking across a busy road blind fold.  The two are not equivalent risks. 

It isn't just that the friend etc is less likely to be as knowledgeable but that even if they do everything right if they have used that sugar before, that flour before, etc then their whole entire pantries are already x-contamed.  To eat a cake made by another without asking anything (which to me is what that ad implies), whether a bakery cake or one made by another parent is a high risk activity and much riskier than eating something with a label made by a company one trusts. 

People can't evaluate risk if they do not know there is a risk.  I didn't know that the vegan cookie at the bakery was high risk when I fed it to DS very soon after he was diagnosed.  Had I known I would not have done that!  My actions were not due to having a different 'comfort zone' than I do now.  They were from lack of info.  The people in the Mylan ads seem to lack info.  If someone KNOWS that food allergy organizations all recommend against eating bakery cookies etc with a peanut or nut allergy and that doing so is considered very high risk and choose to do so then that's their decision.  If they don't know and do it because some ad makes it look just fine and they haven't been given any better info then that's something else entirely.

Not everyone will have the same comfort zone.  That does exist.  However, do I respect my friend's method of dealing with food allergies -- uses his tongue to check if a food has nuts in it, does not carry an epi pen, etc.  No.  I don't respect it and I worry about him.  He doesn't know how very risky what he is doing is.  (shrug)  I just hope this will always work for him.  Doesn't seem smart in the least.  Xcontam isn't always some static thing.  He could easily get a big chunk of nuts in a bite later on, etc.  I don't have to respect that.  Telling people that any old way to handle an allergy is OK would leave people like me who didn't know better doing something very dangerous.  I'm thankful I realized that bakery cookies were not a good idea.  If I hadn't I would have wanted someone to cue me in on that.  Beginners have to learn a HUGE amount of info and the learning curve takes YEARS.  i don't think there is anything wrong thinking it is good to help those people get the info they need to make informed choices. 

Quote from: ajasfolks2 on May 09, 2012, 04:21:01 PM

First, the comment I believe you are referring to was not made by me and did not speak for me.  Additionally, I do NOT agree with that comment about Mylan. 

Oh, thank heavens!

Quote from: ajasfolks2 on May 09, 2012, 04:21:01 PMIt appears that there has been some deletion of the comments at that blog as there were some I did read that are now gone, including some of yours boo?

The blog owner deleted the entire exchange. That's fine - I was inappropriate. But I didn't start it.  :tongue:


Back to the ad content, I was thinking today about an ad that show a girl and boy on the point of kissing with the "do you know what she ate an hour ago?" type messaging. ("Is that an Epi-Pen in your pocket, or are you just glad to see me?")

See, in that case I think we could all get behind the risk a little more. My heart aches when I think about my son having to check out the girl's past food consumption for a half-day. How awkward! You can see why our kids would take this risk early on in a relationship, even if they shouldn't.

And personally, I see eating at a restaurant as FAR, FAR riskier than eating unknown cake (assuming just PA - the cake is never o.k. for milk). In a bakery, they are usually making a type of cake at a time. In a restaurant, there are different meals going on all over the place, and a huge chain of communication. If there are peanuts in both kitchens, where are they more likely to get out of control?

What happens if your waiter doesn't believe in food allergies? Or the line chef is busy? Or the plate dresser doesn't speak English well enough to skip the nut garnish? Or the dishwasher had a bad night and the plate/knife/counter/whatever isn't really clean?

We're never going to agree as a community (whatever that even means) on a risk that's both appropriate to portray and that non-compliant mothers will find compelling. We can't even agree among this little group.

We have 4 non-top 8 allergens.  My son has had multiple serious reactions from products that didn't list any allergens or ambiguous words so I call every company or email.  There is no way for me to go by label reading alone without calling a company.  I recommend it in general even to those with just top 8.  One call to the many big companies lets me know if I can go by label reading alone on quite a few products or not.  So, no, I would not mean that someone with a non-top 8 allergen would just go by an



Having someone cook who is aware of x-contam prevention and xcontam that probably already exists in basic cooking ingredients in their home is a lot different from eating the mystery cake in the mylan ads as for how *I take the ad's meaning*. 

Quote from: SilverLining on May 09, 2012, 03:29:25 PM

QuoteEating a cake that someone else made or a bakery cake is a way higher risk than eating manufactured food that reads as allergy-free

Do you mean the label actually says "<allergen> free" or do you mean the label doesn't list a may contain warning for a specific allergen?

If I only ate food that actually says "sesame seed free" on the label, I wouldn't be able to buy anything.

So, I trust some companies to label well.  And, occasionally I end up having a reaction.  And I trust some people to cook for me.  They verify brands, and they understand about cross contamination.  I don't see that as any riskier then trusting a company to list "may contains" because sometimes when you go through detailed questions with a CSR....well sometimes you find out they don't have separate facilities or separate lines.  No laws about labeling really sucks.

And, as for restaurants, I see them as a higher risk then either processed foods or the few people I trust.

QuoteBack to the ad content, I was thinking today about an ad that show a girl and boy on the point of kissing with the "do you know what she ate an hour ago?" type messaging. ("Is that an Epi-Pen in your pocket, or are you just glad to see me?")

That was a public service announcement from Anaphylaxis Canada.

We only eat at a handful of restaurants--the types that handle FAs the way Disney does.  I do not think that is the same level risk as eating mystery cake.

I think those who just deal with peanut sometimes do things that blow my mind because risks are different than with MFAs and non-top 8.  I have friends who assume any and all pizza is always safe for peanut allergy and this isn't actually true but usually is. They don't even mention their allergy when they get pizza.  I can't imagine that.  but bakery goods ARE high risk for peanut and treenut people.  a lot of milk allergic can eat baked milk so there could be more options at a bakery for them than peanut and tree nut people.  (shrug) 

I guess it depends on which type of restaurant you frequent.  We are extremely picky.  We hardly ever eat out.  the number of allergens, types of them and DS's pickiness with what he will eat make it tricky.

Quote from: SilverLining on May 09, 2012, 08:53:52 PM

QuoteBack to the ad content, I was thinking today about an ad that show a girl and boy on the point of kissing with the "do you know what she ate an hour ago?" type messaging. ("Is that an Epi-Pen in your pocket, or are you just glad to see me?")

That was a public service announcement from Anaphylaxis Canada.

Complete with the "Epi-Pen in your pocket" line?  ;D

Hmph.  Well, I'm just offended that nobody seems interested in MY promotional ideas.   ;D

I think that a backside portrait of a person worshipping the porcelain god is VERY compelling.   :evil:



Maybe if my later ad copy included a fun image?

Quote from: booandbrimom on May 09, 2012, 09:12:31 PM

Quote from: SilverLining on May 09, 2012, 08:53:52 PM

QuoteBack to the ad content, I was thinking today about an ad that show a girl and boy on the point of kissing with the "do you know what she ate an hour ago?" type messaging. ("Is that an Epi-Pen in your pocket, or are you just glad to see me?")

That was a public service announcement from Anaphylaxis Canada.

Complete with the "Epi-Pen in your pocket" line?  ;D

I had to look it up on youtube and watch it because I couldn't remember. 

No mention of epi-pen.  But, it could have easily been an ad for epi-pen.  And there would still be people upset that it insinuates it's OK to eat what your SO is allergic too.

The makers of Viagra don't have this problem.   :misspeak:

lol CM

Quote from: booandbrimom on May 08, 2012, 08:32:04 AM

Quote from: lakeswimr on May 08, 2012, 08:26:20 AM
I think the print add is equally bad to the tv spot.  I think both send the wrong message.  i don't think it is the same as abstinence-only education.  People can have sex pretty darn safely with the use of some protection.  People can't eat who knows what cakes with the same safety.  One is a life or death issue, the other not so much. 

I didn't mean that the situations were 100% equivalent. I meant that the advocacy approach is equivalent.

I've been thinking about this ever since I wrote it and I have to revise my opinion: the situations are also equivalent.

The mortality rate in childbirth is 24 per 100,000 That's probably very equivalent to the rate of food allergy death. And I'm sure there are many more doctor's visits for STDs than there are for food allergy reactions - many of them resulting in women not being able to have children. That's a more serious outcome than most of us walk away from the ER with.

It comes down to whether we want to admit the behavior is going on (sex, parents taking risks with questionable foods) and do practical things to try to support the best outcomes (distributing condoms, marketing Epi-Pens differently)...or not.

This issue of morality superseding practical public policy is at the heart of America's issues. I am not surprised to find it at the heart of the controversy over this ad.

As I said before,  you assume this ad will be effective on people who do not yet carry epi pens and that the net result will be fewer FA deaths.  I do not agree.  I think this ad will make many LESS safe, may case more reactions and even some deaths.  I think there is a huge lack of info esp about the dangers of bakery cakes and other mystery cakes and this ad is going to make it more difficult for people to get that info.  I admire you desire to think outside the box and question things but I do not agree with your conclusions.  Patting someone on the head who is clearly doing very unsafe things and saying, 'well, that's your comfort zone.  Who am I to say my way is better' could be talking down to people who just simply lack info and it could be a big missed opportunity to get that info to them. 

I have had people here get pissed at me when I pointed out they should have epid their child who was having serious breathing difficulties during a reaction.  What if no one speaks up and newbies see that who don't have good docs and think that is an appropriate way to handle anaphylaxis?  I had an allergist tell me that my father's reaction where his whole body swelled up and he was almost passing out because he couldn't breath well was not serious and benadryl was all he would need ever.  There is a lack of info.  It costs people their lives.  The fatality list is full of these people. 

If your way makes more people collectively safe, great.  I'd support it.  But I do not believe it does or will.  I do think it clearly will put some people at greater risk. 

lakeswimr, I think this is the first time we've ever totally agreed.  ;D Your last post summarized my thoughts on the matter.

I think there is a contingent of people who probably *could* benefit from education. Never said there wasn't.

But there's an even larger one that's rejected the education they've received. You haven't experience it apparently...but too many of the rest of us have for it to just be imaginary.

I didn't say this ad would work. I don't know if it would or wouldn't.

We'll never know. We were too afraid to let them try.

Boo, I agree that there are a lot of people who have rejected the education/don't apply it etc.

I think its same as the moms you see carting kids around without seat belts, parents who don't "insist" their kids wear bicycle helmets (not negotiable in our house), parents who let their kids go to the movies unaccompanied etc.

they know seatbelts save lives, they know they are breaking the law by not buckling up seatbelts and making their kids wear helmets. 

People know risks of sexual encounters...unwanted pregnancy, stds etc. but peoplestill engage in unprotected sex. 

People speed on the highway even though they are breaking laws and probably at greater risk of serious injury in an accident.

same with smoking....ny has these horrible smoking commercials and they've talked about how they are ineffective in getting people to quit. 

I think same thing for managing allergies.   

I haven't seen it very much at all. What I see is that most people with food allergies *first* see a pediatrician or general doctor and in almost all cases they receive incorrect or a lack of information from these doctors.  That is nearly true of everyone.  We do not pass go and get to go directly to an allergist.  We see the pediatrician first.  Sometimes people see an ENT or GI doctor and get lack of info or incorrect info from there most of the time as well.  And then there are the allergists who do not specialize in food allergies or are not up to date on them, of which there seem to be a good % as well and they also tend to give incorrect info or a lack of info or out of date info.  so, most Fa people are exposed first to the wrong info or lack of info and falsely think they know how to handle FAs when they do not.  So, what you think is a rejection of info I see as info that was less than optimal and lacking.  I think that is so much more common than people seeing good allergists who specialize in food allergies and are up to date first of all and getting clear info and then rejecting it.  Even among very good allergists most recommend joining faan and do not go into things such as 'don't eat bakery cakes' even though all would say that one should not eat bakery cakes, etc.  They don't have time for all that. 

Of course we shouldn't think it is a great idea to 'let them try' something that is clearly going to hurt some people.  I don't want random ads that do damage in the process of maybe brining mylar more business.  you are putting a whole lot of eggs into the basket that this ad is more beneficial than harmful and now say you don't know.  Well, I KNOW it is at least harmful to some.  That I can clearly see with my eyes.

Quote from: booandbrimom on May 10, 2012, 07:26:17 PM
I think there is a contingent of people who probably *could* benefit from education. Never said there wasn't.

But there's an even larger one that's rejected the education they've received. You haven't experience it apparently...but too many of the rest of us have for it to just be imaginary.

I didn't say this ad would work. I don't know if it would or wouldn't.

We'll never know. We were too afraid to let them try.

lakeswimr, if you haven't gotten my point by now, it's not possible for me to make it. You clearly have a vested interest in believing what you believe.

It's moot anyway.

Quote from: booandbrimom on May 10, 2012, 09:07:01 PM
lakeswimr, if you haven't gotten my point by now, it's not possible for me to make it. You clearly have a vested interest in believing what you believe.

It's moot anyway.

No, I do not think we are going to agree on this topic. I do not have a 'vested interest'.  i have a brain in my head an experience and this is my opinion based on those things.  Your brain is telling you something very different and you think you are right. 

As to upping the numbers of Epi carrying: 
I think the pharmaceutical companies have a better chance of increasing the number of epinephrine-carrying patients than do the doctors or anyone else.

When the "cool" factor comes into play with the new card-sized epinephrine, then those might be carried more.


Now, CARRIED is one thing.

Actually USING it is entirely another.


Maybe Apple needs to build one into an Ipod and THAT will make a significant difference in the number of carrying patients.

I'm joking.

But not really.



They need to make it a status symbol.  THEN it will be the "have-to-have".

But it will NOT be about life-saving first. . . for now anyway.


It's what we've become in the USA.

And those who cannot afford will continue to NOT be able to afford.



Just MHO, as usual.

I'm done editing that now.   ;D

:banghead:  stupid dying sony with the jumping cursor 

I have an idea for new ad copy:

Epipen: Let Them Eat Cake!  :happydance:

Quote from: Momcat on May 12, 2012, 08:40:39 PM
I have an idea for new ad copy:

Epipen: Let Them Eat Cake!  :happydance:

perfect. 

Isn't that what everyone some people are upset the two ads say?

I have had at least one person if not more say this to me after telling them DS can't eat something they looked at me as though I'm stupid and said, "don't you have epi pens?" lol 

Yes-- in all seriousness, it may be raising awareness of epinephrine autoinjectors for the general population...

but... um...


it's made OUR lives harder recently.  I've also had no less than three people say similar things to US in the past three weeks.

"Why don't you just have {DD} carry an epipen?" (in respose to my assertion that something was not a safe environment for a parental "drop-and-go"

"Doesn't she have epipens?" (when I politely but firmly refused a restaurant meal invite)

"She should learn how to use one of those pen things." (unsolicited, 'helpful' advice from an acquiantance of DH's re: DD needing to 'go to a regular school')

It may be coincidence, but I'd not actually heard people say such things to me in quite some time.  The frequency seems alarmingly high right now, and they generally don't want to hear my additional information, preferring to believe that I'm "ignorant" because they saw something about it on TV, I'd assume.  THAT part is definitely new, as always before now, such remarks were more vague and considerably less authoritative in nature. :-/  It's emboldening people who have NO BUSINESS making this kind of decision to decide that my daughter needs nothing more in the way of accommodations-- and that anything we might ask for is unreasonable.  Thanks, Mylan. :-[

Quote from: SilverLining on May 13, 2012, 07:26:48 AM
Isn't that what everyone some people are upset the two ads say?

I think she was kidding.   ;)

Heck, if Epipen were perfect solution then along with the pair of Epi's my family members might also resort to wearing garlic necklaces.

;D

There might be a fall campaign commercial (airing about Halloween time) in there for Mylan.  Just sayin'.

;)

Mylan Press Release for Food Allergy Awareness Week

http://www.prnewswire.com/news-releases/mylan-specialty-lp-commemorates-15th-annual-food-allergy-awareness-week-151348915.html (http://www.prnewswire.com/news-releases/mylan-specialty-lp-commemorates-15th-annual-food-allergy-awareness-week-151348915.html)

Quote from: CMdeux on May 13, 2012, 02:51:15 PM
Yes-- in all seriousness, it may be raising awareness of epinephrine autoinjectors for the general population...

but... um...


it's made OUR lives harder recently.  I've also had no less than three people say similar things to US in the past three weeks.

"Why don't you just have {DD} carry an epipen?" (in respose to my assertion that something was not a safe environment for a parental "drop-and-go"

"Doesn't she have epipens?" (when I politely but firmly refused a restaurant meal invite)

"She should learn how to use one of those pen things." (unsolicited, 'helpful' advice from an acquiantance of DH's re: DD needing to 'go to a regular school')

It may be coincidence, but I'd not actually heard people say such things to me in quite some time.  The frequency seems alarmingly high right now, and they generally don't want to hear my additional information, preferring to believe that I'm "ignorant" because they saw something about it on TV, I'd assume.  THAT part is definitely new, as always before now, such remarks were more vague and considerably less authoritative in nature. :-/  It's emboldening people who have NO BUSINESS making this kind of decision to decide that my daughter needs nothing more in the way of accommodations-- and that anything we might ask for is unreasonable.  Thanks, Mylan. :-[

Really? I've been getting that particular line for *years*...

Thing is, the first two were from people who have KNOWN us for years.   :-/  That part was definitely new.

I guess the part that I found irritating (and novel) was the fact that these people were sort of annoyed that I was "choosing" to be... DIFFICULT... about how we handle DD's allergies.  You know, INSTEAD OF just carrying one of those pen-thingies.
~)

Most people in the past have been trying to be helpful and telling us something that they felt we might not know.  Yes, perhaps ignorant in light of DD's extensive history, but still-- well-meaning and sincere/friendly.

Contrast that type of statement:

"Oh, wow-- she should really carry one of those emergency pen things!!  Do you know about those?"

with

"Why don't you just have her learn to carry one of those pens for herself?  She's got to learn to do that at some point, you know."

  The latter has a vibe more of "why are you such enormous PITA's about this whole thing?"   :-[

Quote from: CMdeux on May 14, 2012, 06:17:28 PM
Thing is, the first two were from people who have KNOWN us for years.   :-/  That part was definitely new.

I guess the part that I found irritating (and novel) was the fact that these people were sort of annoyed that I was "choosing" to be... DIFFICULT... about how we handle DD's allergies.  You know, INSTEAD OF just carrying one of those pen-thingies.

CM, I don't want to get booted for continually flogging my blog here...but you gotta read today's entry. Just for you, honey!

http://foodallergybitch.blogspot.com/2012/05/food-allergy-public-service.html (http://foodallergybitch.blogspot.com/2012/05/food-allergy-public-service.html)

EXACTLY.   :evil:

Quote from: CMdeux on May 15, 2012, 12:25:21 PM
EXACTLY.   :evil:

I'm gonna be laughing all day. Don't even care if anyone else reads it!

I think I'm going to make up some napkins.

Quote from: booandbrimom on May 15, 2012, 12:22:34 PM

Quote from: CMdeux on May 14, 2012, 06:17:28 PM
Thing is, the first two were from people who have KNOWN us for years.   :-/  That part was definitely new.

I guess the part that I found irritating (and novel) was the fact that these people were sort of annoyed that I was "choosing" to be... DIFFICULT... about how we handle DD's allergies.  You know, INSTEAD OF just carrying one of those pen-thingies.

CM, I don't want to get booted for continually flogging my blog here...but you gotta read today's entry. Just for you, honey!

http://foodallergybitch.blogspot.com/2012/05/food-allergy-public-service.html (http://foodallergybitch.blogspot.com/2012/05/food-allergy-public-service.html)

Loved your blog about milk bans in elementary schools.

Quote from: booandbrimom on May 15, 2012, 12:22:34 PM

Quote from: CMdeux on May 14, 2012, 06:17:28 PM
Thing is, the first two were from people who have KNOWN us for years.   :-/  That part was definitely new.

I guess the part that I found irritating (and novel) was the fact that these people were sort of annoyed that I was "choosing" to be... DIFFICULT... about how we handle DD's allergies.  You know, INSTEAD OF just carrying one of those pen-thingies.

CM, I don't want to get booted for continually flogging my blog here...but you gotta read today's entry. Just for you, honey!

http://foodallergybitch.blogspot.com/2012/05/food-allergy-public-service.html (http://foodallergybitch.blogspot.com/2012/05/food-allergy-public-service.html)

BRILLIANT.