Survey on Thresholds from FARE

[SilverLining]

As long as it is crystal clear that whatever action is taken, it's a FIRST step, not the whole journey, then I don't have a problem with it.

 

Oh, you were being serious?  my apologies.

~~~

I'm not completely sure of what the plan here is.  labelling that says <1mg peanut protein ?  Or if it is <1mg, they don't want a may contain (which means obligation to put may contain if over 1mg?).

I don't want that <1mg to be considered equivalent to peanut free.  They are not equal IMO. 

[booandbrimom]

I understand there are concerns. I just hate to see those concerns derail something that might actually have had value to our community. Whether you would have used the information to avoid foods or include foods, a quantitative assessment had value. It would have been the start of holding manufacturers more accountable.

I use past tense because I am already pretty certain of how this will play out. The cost of this, the uncertainty of the science, and the fact that the food industry will use our own comments against us means this is probably DOA.

I hope I'm wrong. But frankly, I think it's another instance of us as a community not being able to hold two thoughts in our head at the same time. How do we square "no amount of peanut is safe" with "we're already eating some peanut in our food?" It's shameful that the industry uses our emotions against us, but I think they do and we let them.

If we don't measure, we don't know, and we can keep our illusion of a peanut-free world. Maybe (emotional) security really is more important than safety. No one wants to count the fly wings.

[CMdeux]

I'm much more cynical than that, even.

See, I think that this entire thing has ALWAYS been framed in such a way that there is no way for the food industry to have to DO anything differently...

because of the way that they've been asking the questions, see.

They don't WANT to monitor (at least most of them don't).  And they don't WANT to have to track production changes.

They don't.  General food safety fiascos and massive recall efforts should have shined a very bright light into that particular dark heart of the food manufacturing industry.  I don't understand why people WITHOUT food allergies aren't more peeved over that.

<shrug>

In other words, I'm pretty sure that this was never anything more than a set-up to start with.    I don't think its allergic consumers derailing this process, in other words.  I don't think it was genuine to begin with.

[booandbrimom]

In other words, I'm pretty sure that this was never anything more than a set-up to start with.    I don't think its allergic consumers derailing this process, in other words.  I don't think it was genuine to begin with.

I agree (and wrote that in my blog). But my point was we didn't have to take the bait. I wish people would really think through what they want out of FARE instead of rejecting the (imperfect) process!

I wish we could agree as a community that it would be a good thing to measure the allergens in our food. That seems so *simple* to me. Why does it get derailed by crazy conversations about "any amount of allergen is too much" or "it can't be measured" or "thresholds change" or whatever? We spend so much time sniping at each other that there's never consensus. People are too wrapped up with which side of the line they're on (using these numbers to eliminate foods vs. include them) to see that the information would be useful, whichever side.

Where is the fricking outrage that a 21-year-old college kid died after eating cookies that were not labeled for peanut...and the court's response was to shrug and say "geez, he should have known he couldn't eat manufactured food." Why can't we just get behind this as a community, even if it's not perfect?

[CMdeux]

I just don't have much hope on this front when even REGULAR consumers (that is, those who haven't been fried desensitized, if you'll pardon the phrase,  by years of dismissive/cavalier treatment by high-handed food manufacturers) can't get very angry at a company that can't even TRACK where it's sources come from in enough time to stop people from dying from pathogens.

(See "peanut butter contamination" parts I, II, and III... a recall effort that SHOULD have taken at most 72 hours with proper source-materials tracking took, instead, several MONTHS.  Months where people continued to unknowingly eat contaminated food that had been made with the tainted product.)


The FDA is so grossly understaffed and underfunded for such efforts that the foxes are minding the chicken coop and have been for many years.

We're a minority, and therefore, we're even LOWER priority than general consumers.  If nobody can muster enough concern to care about that peanut butter recall and what it signifies about our food processing industry standards, then I'm pretty confident that food allergic consumers are less than insignificant, our physicians and advocacy organizations aside.


I advocate trying, of course.  But I also disagree that it isn't helpful to point out the sheer scope of the problem that the FDA is looking at trying to solve.  Oh, sure-- it's pointing out that we don't have a horse donkey, on our way to tilt at the windmill.  Granted.  But it's a start, and since it's all tilting at windmills to begin with, I don't really see where there's a lot of harm.  I don't think that the FOOD INDUSTRY is listening either way.  So I figure that comments are directed not at them, but at the researchers and maybe the science/research arm of the Feds; they need to know what our concerns ARE, not what they think that they 'should be.'  Until they can get buy in from allergic consumers, they aren't going anywhere, and they won't get that by patting people on the head.

I'd point out that the survey did not ask "would it be a good idea to measure cross-contamination in foods?"

If it had, the answer would have been immediate and obvious.  Heck, even if they'd asked about what kind of cross-contamination (not labeling) would make consumers comfortable, THAT would have given useful information.

Here's what I think needs asking:

a) what kind of threshold are you living with? 

b) what evidence do you have to support that belief?

c) what kind of comfort zone do you have? (this was included on the survey)

d) what would you like for food labels to tell you that they currently don't?

e) in what ways does inadequate food labeling have an adverse impact on you/your family?

f) would you be okay with such an effort being voluntary, at least inititially?



Where I object to the surveys that I have seen thus far is that they don't really parse out the fact that there are WAY different groups here-- with vastly different needs.  The average allergic consumer finds labeling to be onerous because of a perception that advisories are merely CYA, and that "nobody" is "that sensitive" and that such labels force them to do one of two things:

i) ignore the warnings on the basis of past experience and hope for the best, or
ii) avoid the food-- probably unnecessarily.


I get that.  I get that improving labeling NOW would make life much, much, much better for those people.

Here's my problem with this, though--  if you take that group, make THEM happy, then they lose all motivation to improve labeling for the very tiny minority whose lives are still on the line.

We're a small enough minority as it is.  Who is going to listen to just 1% of the 5% in another ten years, hmmm?    That puts consumers like my DD in the position of needing an orphan drug, basically.  No leverage.  None.  So this gets back to (for me, anyway) a Faustian choice between making life "better" for the majority by reducing their stress and widening their horizons... or being selfish and saying "you know, this doesn't help us, and in fact, it introduces additional hubris into things which is likely to prove dangerous." 

We've been treated to some of that attitude in the past five years since so many challenges have shown higher thresholds.   Yep.  Right back to "but I know that you're LYING, because that isn't POSSIBLE..."  It's been disheartening.  In other words, the ONLY way that people believe my DD's threshold is when she proves it to them by reacting to the "impossible."   

[lakeswimr]

Can they really say something like that?  Xcontam is not a stable thing.  It varies GREATLY.  I worry about any attempt to say a product only has such and such amount of allergen in it unless we are talking something like how Turtle Mountain does things. 

I do completely understand your point that an arbitrary threshold would not be a safe threshold for every individual. But why does that mean we shouldn't push to have thresholds quantified in the first place? I would so much rather know "average peanut content <1 mg" than "made in a factory that also processes peanut." The first statement gives me much more information than the second. What I DO with it is up to me.

There is also a difference between saying "this food has <1 mg peanut" and saying "this food is safe for all peanut individuals." I understand how you think one might morph into the other, but they are not the same.

I guess I just don't see it as somehow picking on the weakest in our community. I see it simply as information. Not perfect information, not completely useful information, but information. Better than what we have today.

Unless you buy into the likely food-industry argument that these labels will likely just scare consumers away from peanut-containing foods they're already safely eating?

[CMdeux]

The only way to make such a statement is with statistics and a lot of data.

With in-line, REAL-TIME, CONTINUOUS monitoring, it's possible.  Because that is the way to know what "normal variance" looks like-- and whether or not there are ever serious deviations from that accepted tolerance range.

That can be done.  The pharmaceutical and hi-tech industries do that already.  It's not perfect, but it's damned close in critical manufacturing. 

I think it's also clear that it adds costs which would make it unbearable for all concerned in food manufacturing-- at least for now.    The science isn't there yet to make it truly feasible.

[lakeswimr]

I'm not certain my son is eating allergens in his foods, though.  I call every company because DS had very serious reactions before I knew to call companies.  maybe he does have some xcontam but he has reacted to products that i was told should be safe and I called and got more info and so I think he is pretty darn sensitive to many of his allergens.  If he were eating them I think we would know it.  But you are right--he could have thresholds under which he won't react.

BUT, thresholds can and do change over time.  The longer one avoids the lower the threshold can become.  Also, there is the full bucket theory which seems to hold true for DS.  DS had ana at an event last year when he hadn't even eaten anything.  It was a contact ingestion reaction that must have come from touching residue and touching eyes, nose or mouth.  This happened a week after he had anaphylaxis due to xcontam on food he ate at a restaurant.  I think it is possible his body was on higher alert than usual and that normally he would not have reacted at that party.  I don't know, though. 

But I think the whole idea that there is a threshold that we can know is safe is risky.  My friend's son did desensitization and it was working and then he started reacting and then he started reacting to smaller and smaller amounts of peanut.  And the desnsitization failed after the kid was up to 1 peanut.  My son seemed to outgrow an allergy (passed a challenge) and was eating it at home and then started reacting and I tried smaller and smaller amounts and couldn't find any amount that worked.  What happened there? 

Dr. Wood describes having reacted from eating foods that had his allergen in it, avoiding his allergen, and then having a super severe (5 epi) reaction from xcontamed baked goods.  Eating baked goods containing the allergen hadn't caused nearly as big a reaction but he had those years of total avoidance in between so threshold went from relatively high to exquisitely low.

What I want to know is what is the point of this.  Is it motivated by the food industry or by the FDA's concerns for the FA community.  From talking to the FDA i really have had the feeling they have many people who truly 'get it' when it comes to FAs.  This was a very pleasant surprise.  So, I wonder what is the motivation.  At first I thought it was that we do not have standards when it comes to advisory labeling.  The FDA has cracked down on companies that use advisory labeling to CYA or in place of good cleaning practices.  They have seemed to be on our side.  But what is all this really about?  Does anyone here know the motivation for this survey?

I understand there are concerns. I just hate to see those concerns derail something that might actually have had value to our community. Whether you would have used the information to avoid foods or include foods, a quantitative assessment had value. It would have been the start of holding manufacturers more accountable.

I use past tense because I am already pretty certain of how this will play out. The cost of this, the uncertainty of the science, and the fact that the food industry will use our own comments against us means this is probably DOA.

I hope I'm wrong. But frankly, I think it's another instance of us as a community not being able to hold two thoughts in our head at the same time. How do we square "no amount of peanut is safe" with "we're already eating some peanut in our food?" It's shameful that the industry uses our emotions against us, but I think they do and we let them.

If we don't measure, we don't know, and we can keep our illusion of a peanut-free world. Maybe (emotional) security really is more important than safety. No one wants to count the fly wings.

[lakeswimr]

I guess I don't fully trust FARE.  They are an improvement on the old FAAN but I want to speak my experience fully and truthfully on their survey NOT to derail anything but so that people like my son are considered in whatever they recommend.  Their whole '90% of all FAs are top 8' and ignoring all other allergens didn't serve me well.  I want whatever the try to push for to be something that takes into consideration the needs of the entire FA community.

The fact that thresholds can change is entirely relevant depending on how whatever they are doing with the FDA and food industry gets used. If what results is fewer warnings on labels and less access to info about possible xcontam that will be a very bad thing for ME.  I have to call or email every company to know if food is safe for my son.  I have a very hard time getting this info from some companies while others are fantastic.  I would hate to see an increase in difficult companies as a result of this (which I can easily imagine.)  I can't tell you how many times I have been told that they don't HAVE to tell me anything but whether their product contains a top 8 as mandated by the FDA and that they fulfill the FDA requirement and not a thing more.  MANY times.  I don't know if you deal with non top 8 but non top 8 requires hundreds of hours of time to even figure out what you can feed your child.  I don't trust companies as a whole even though some are fantastic and I feel nervous that my access to info may change negatively as a result of this.  I hope the opposite is true but as CM said, I'm not thinking there is even a chance that I will ever be able to just pick up a label and go from there to know if a food is safe or not without having contacted the company first. 

If I knew the objective of this then I could get behind it.  As things stand I feel nervous about it.  I know how to navigate packaged food products with my son's allergies as things stand now--contact companies and avoid those who wont' give me info.  If things change will I still be able to manage to know which foods are allergy-free for him or not?  I'm not sure of that so I worry. 

In other words, I'm pretty sure that this was never anything more than a set-up to start with.    I don't think its allergic consumers derailing this process, in other words.  I don't think it was genuine to begin with.

I agree (and wrote that in my blog). But my point was we didn't have to take the bait. I wish people would really think through what they want out of FARE instead of rejecting the (imperfect) process!

I wish we could agree as a community that it would be a good thing to measure the allergens in our food. That seems so *simple* to me. Why does it get derailed by crazy conversations about "any amount of allergen is too much" or "it can't be measured" or "thresholds change" or whatever? We spend so much time sniping at each other that there's never consensus. People are too wrapped up with which side of the line they're on (using these numbers to eliminate foods vs. include them) to see that the information would be useful, whichever side.

Where is the fricking outrage that a 21-year-old college kid died after eating cookies that were not labeled for peanut...and the court's response was to shrug and say "geez, he should have known he couldn't eat manufactured food." Why can't we just get behind this as a community, even if it's not perfect?

[SilverLining]

I use past tense because I am already pretty certain of how this will play out. The cost of this, the uncertainty of the science, and the fact that the food industry will use our own comments against us means this is probably DOA.

Until the science is there, the rest doesn't matter.  (And until costs are low enough that companies feel they can recoup those costs it's not gonna happen anyway.)

[lakeswimr]

CM, I like your list of questions!    That survey would have made me less nervous than the one used. 

[CMdeux]

Oh, I disagree with that, Silver.

I think that the science is being driven by demand and perceived needs.  The researchers don't all of them live food allergies day to day, and they aren't always very clued in to what those real needs/difficulties actually are.

So information and discussion is good.  I just don't think that we're at a point where any kind of united front is useful to anyone.

We're still at a point where there is a lot of question about what the "needs" actually are to begin with.  The bottom line is that MOST food allergic consumers are well enough served without advisory labeling, and including that labeling as made their lives more confusing and stressful.

But we can't forget that for a minority, simply exempting food below {threshold} from any need for an advisory is NOT a complete solution.  That will kill people.

I'd hate to look back at the passage of FALCPA's original provisions as a "golden age" of food safety for low-threshold consumers.  But I can see that happening if industry is allowed to unilaterally DECLARE what they consider to be "low enough that nobody can react to it."

[lakeswimr]

What would you like ideally?

I would like sesame to be covered under current labeling laws.  I think it should be already but FAAN's study found it didn't have the numbers in the US to be covered.  I have doubts about this.  I know FAAN knows how to do a study of that type but how can some top allergists claim sesame is more common than peanut, that it is the 4th most common or higher in their practice and have FAAN find the #s were so much lower?  (sigh) 

I would like when I call companies to be able to get info on the phone about shared equip.  I would like to know the following--is there a chance of x-contam with my son's allergens or not?  If they really don't know or can't possibly know I would like to feel they are acting in good faith and not just blowing us off.  Some companies are able to know this and tell us so why can't, oh, Hain Celestial?  You know?  I'd like to be treated politely no matter the situation.  That's what I would like.  I would like Hain  Celestial to HAVE to tell me whether their foods freaking CONTAIN sesame or not. They won't even tell me that.  How can I have any chance at knowing if their food is safe? 

Basically my main goals is this...

I would like to see an increase in companies that will give me the info I need to decide if a product is safe for my son. 

Anything that helps with that I will support fully.  How is this survey aimed at doing that?  I'm not seeing the link between this survey and me being able to get MORE info from these companies that will help me know.  I see a good chance of getting LESS info.  I hope I'm wrong about that. 

[lakeswimr]

What I worry is that we will be told only, 'the product is under the (whatever threshold deemed safe by the industry/FAIR/FDA)' and not get any info on shared equip, etc.  For those of us who are more sensitive we would be totally screwed.  Is there something I'm not seeing here?  This is also how I think CM sees things.  Am I right?

[CMdeux]

 

I would liked for a company like Kraft to HAVE to tell me "is this product produced on a line which is sharing production with a product containing peanut, or these tree nuts?"

Instead, they tell me that their food labels are "the most complete and up-to-date information" about their food, and that they can't tell me what I want to know.  That I should consult with my physician if I want more information about food safety.  And they just keep.repeating.it.