Mylan Ad Frenzy Part II

[DrummersMom]

AdminCM, thanks for clarifying.

[AdminCM]

Sure thing.  Thank YOU for asking directly.   

[lakeswimr]

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*. 

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.

[CMdeux]

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.   

[SilverLining]

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

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.

[CMdeux]

My new ad copy for Mylan:

Epipen:

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

 

[ajasfolks2]

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?

[SilverLining]

Thank you for answering.

[ajasfolks2]

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.   

[lakeswimr]

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. 

[booandbrimom]

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!

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?

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


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.
 

[lakeswimr]

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*. 

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

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.

[SilverLining]

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?")

That was a public service announcement from Anaphylaxis Canada.

[lakeswimr]

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.

[booandbrimom]

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?")

That was a public service announcement from Anaphylaxis Canada.

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