CSPI Sesame Petition filed!!!

[lakeswimr]

Good luck when you contact the food allergy organizations.  It sounds like KWFA/AAFA and FAACT are interested in supporting this.  If they both do, hopefully FARE and others will want to give their support as well.  The fact that it is now being supported by a group of top allergists is powerful, IMO.

If you want to generate buzz I think some organization could post things on FB and other social media such as the following.

*  'Quick Quiz - which of these foods contains sesame'?  (Picture of food labels that have 'spice' or 'natural flavor' listed in the ingredients.)  The only way to know is to call the companies and ask.  Did you know that sesame can be in foods and does not have to be declared on the label.  Support the CSPI petition.  Let's get sesame labeled. (link to where people can sign their support.)

*  We could have the quote, 'While other mothers were teaching their food allergic children to always read labels, I was teaching mine you can't trust labels.'  Did you know sesame does not have to be listed on food labels?  Please support the CSPI petition to get sesame labeled.  (link to petition)

*  (Picture of a lot of breads.)  'Which of these breads is unsafe for sesame allergy? #1, #2, #3, or #4?  The answer is none of them as safe.  Almost all breads in America are made on shared equipment with sesame.  This does not have to appear on the label.  Sesame can also be in foods and not listed on food labels.  Please support sesame labeling in the USA.  Sign the CSPI petition.  (link to petition)

etc. 

I can think of more such as one referencing that sesame is required to be labeled in Canada, the EU, and other countries around the world.  Let's get sesame labeled in the USA.  etc, etc.

But I think having someone officially contact all those big food allergy organizations in an official capacity will have a big effect.  So, thank you for doing that.

If you have something in particular you want people like us to do, please let us know.

I think the trouble with this issue is probably the talking points.  It is difficult to get people who don't have food allergies or who deal with top 8 allergens to fully understand what not having sesame have to be labeled entails.  I have explained it over and over to many people over the years who NEVER get it.  And thankfully now that DS has outgrown sesame we don't have that stress.  But I still care about this issue. 

Sesame is a super potent allergen and it can be in foods without being on the label.  That's dangerous.  It should be on labels.  While having it have to be labeled would not mean cross contamination would have to also be labeled, it would make companies more aware of sesame as an allergens and more companies would try to prevent sesame cross contamination so more foods such as more breads would be safe for sesame-allergic people. 

People like me who want to support this will do what we can to help but we need some direction.  If you or someone at CSPI lets us know what we can do to best support this, we will help.  But otherwise, I'm confused as to how I can help. 

I think step by step instructions on what we can do would be important.  It doesn't have to be a long write up but something that explains what we can do would help generate people doing those things, whatever they may be. 

I signed the petition, I talked it up with other FA parents.  I posted about it.  Please let me know what more I and others can do.

[LinksEtc]

Of course, I have lots of thoughts    ...

won't be able to write them down all at once.

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One thing is that politics can get ugly ... just look at this if you need a reminder ...



Hard-Nosed Advice From Veteran Lobbyist: 'Win Ugly or Lose Pretty'
Richard Berman Energy Industry Talk Secretly Taped
By ERIC LIPTONOCT. 30, 2014

http://www.nytimes.com/2014/10/31/us/politics/pr-executives-western-energy-alliance-speech-taped.html?_r=0

The company executives, Mr. Berman said in his speech, must be willing to exploit emotions like fear, greed and anger and turn them against the environmental groups.

[LinksEtc]

#1 ? for me right now:

Why has FARE remained silent on the sesame petition?

Only those on the very inside circles know.

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Part of me is very frustrated with them.

Part of me wants to apply pressure in ways that are not nice ....

ex - have CSPI/Brian come up with a joint statement to be posted on his change.org petition asking the 6500+ people who signed to contact FARE asking for FARE to support the petition.

Sigh.

We should not have to beg or strong-arm our "own" main advocacy org into supporting this petition.

We should be on the same side.

We should be working together.

Sigh.

We shouldn't have to lobby our own org.






Acting on frustration is almost never a good thing.

Please, please, please ... can we work together as a food allergy community for the health & safety of those having a sesame allergy?

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Again, please don't quote b/c I'm willing to delete if it will help our efforts.

[lakeswimr]

I am choosing to think in a positive way about this.  If the other big FA organizations support this, FARE may as well, especially now that there are top allergists supporting it.  I think they will not want to be the only one not supporting it.  I think if we urge them to support it, it should be in a positive way.  I think many of us would be willing to email and call them and post on their FB page and etc asking that they support the CSPI petition.  I think that in politics what you said might be true.  In general in life, approaching people and groups in a positive way seems a lot more effective.  I don't want to focus on the problem but on the solution.  So, whatever may be the cause of them not supporting this so far is not my concern.  My focus is on getting sesame labeled.  If we can get FARE to support this, that would be a good thing.

Yes, i agree that they should be supporting this.  They told me years ago when they were FAAN they supported this but that they had other more pressing issues to deal with first. 

[LinksEtc]

I am choosing to think in a positive way about this.  If the other big FA organizations support this, FARE may as well, especially now that there are top allergists supporting it.  I think they will not want to be the only one not supporting it.  I think if we urge them to support it, it should be in a positive way.  I think many of us would be willing to email and call them and post on their FB page and etc asking that they support the CSPI petition.  I think that in politics what you said might be true.  In general in life, approaching people and groups in a positive way seems a lot more effective.  I don't want to focus on the problem but on the solution.  So, whatever may be the cause of them not supporting this so far is not my concern.  My focus is on getting sesame labeled.  If we can get FARE to support this, that would be a good thing.

Yes, i agree that they should be supporting this.  They told me years ago when they were FAAN they supported this but that they had other more pressing issues to deal with first.

Lakeswimr,

You are a wise one ... I know "people skills" are not my strength ... infuriating them probably would not be helpful  ... keep my passion in check ... this is why I have stayed out of this part of the effort.

[hsw24]

The confusion people have between the two petitions is pretty widespread - in a sense, the CSPI petition is submitted and being reviewed but people signing the change dot org one may believe that is being seen by the fda when the contents need to be uploaded to the docket if they haven't already been.

I want to give concrete information on what we can do - going to get it soon!  I will say the Canadian argument did not impress, the fda seems to think that it doesn't tell them what US consumers need.  Because borders are magical, right?   

I do like the idea of trying to get allergic families in the top 8 to understand what it is like.  But I see conflict between even nut allergic folks and milk allergic ones in terms of the latter feeling the former group isn't compassionate on their plight since nut free classes exist but milk free is a harder battle.

I asked allergy eats about sesame labeling and the reply was that restaurants don't even want to disclose the top 8.  Which we all know, but labeling benefits them so they can offer customers labels to review instead of potentially having to have a chef guess.

[LinksEtc]

I have had a killer week - I really want to sit down and, post meeting, go through FALCPA and the CFRs, etc. and see if anything jumps out at me.

Homa, what I am somewhat good at imo (unless I'm suffering from something like the Dunning-Kruger effect  ) is this type of thing.  Please let me know if I can help you in any way here ... I've read that FDLI law paper "When Food is Poison" several times ... I've been at this "let's get sesame labeled thing" a long time).  I know some pretty detailed info about things like that 90% statistic .. which let me somewhat sarcastically point out, there is no peer-reviewed USA study that proves the accuracy of this so-called "fact".

[LinksEtc]

Sesame oil was discussed at the meeting - the FDA folks asked if sesame oil was like peanut oil in that (in theory) it would be refined to the point of not having the protein.  I think they wanted to know if we were asking that sesame oil be labeled as well but not in a threshold sense, just about the binary proposition of it being allergic (or not). 

My understanding is that sesame oil is often unrefined which means it still has proteins that can cause a rxn.  That being said, I would think that FDA could still use the same sort of regulatory language for sesame about highly refined oil not needing to be labeled as it does the major food allergens ... now whether sesame oil could ever meet that highly refined definition is a question for experts like allergists ... but FDA could take the same approach it does with the major allergens.

[LinksEtc]

I think at this point CSPI needs to let us know how we can best help & imo any updates to Brian's petition, at this point, should be approved by CSPI so that we are all on the same page, coordinating our efforts, speaking with one voice.

[lakeswimr]

The confusion people have between the two petitions is pretty widespread - in a sense, the CSPI petition is submitted and being reviewed but people signing the change dot org one may believe that is being seen by the fda when the contents need to be uploaded to the docket if they haven't already been.

I want to give concrete information on what we can do - going to get it soon!  I will say the Canadian argument did not impress, the fda seems to think that it doesn't tell them what US consumers need.  Because borders are magical, right?   

I do like the idea of trying to get allergic families in the top 8 to understand what it is like.  But I see conflict between even nut allergic folks and milk allergic ones in terms of the latter feeling the former group isn't compassionate on their plight since nut free classes exist but milk free is a harder battle.

I asked allergy eats about sesame labeling and the reply was that restaurants don't even want to disclose the top 8.  Which we all know, but labeling benefits them so they can offer customers labels to review instead of potentially having to have a chef guess.

The argument for sesame labeling with the FDA is different than what I would argue to FA organizations and maybe different than I would argue to other people dealing with FAs.

To the FDA I think the argument is to address their question--how does not having it label affect people.  Well, it causes anaphylaxis like it did in my child because sesame was in a food and not listed on the label.  I found I had to call companies or email them to learn if foods contained sesame but couldn't get companies to give me this information.  It made buying packaged and processed foods other than from a few companies that did label for sesame something that meant going without or taking a risk at the unknown.  What can sesame allergic people do in this situation when companies don't have to label and won't disclose needed info?

Also at issue is the super potency of sesame.  Along with peanuts and other seeds, sesame is the most potent of allergen and according to The Peanut Allergy Answer Book it takes 1000 times less sesame to cause a reaction than other allergens. 

There is also the frequency issue.  While the study by Mt. Sinai tagged onto the peanut study found sesame to be a somewhat low % of the population, Dr. Wood has stated that the % of sesame allergic people in his practice is higher than that and higher than a bunch in the top 8.  So, CSPI could poll the allergists who already support sesame labeling to get the % of their patients who deal with sesame allergy.  We could also do an informal poll at KWFA, which while not scientific, would give some indication.  I believe these would show sesame allergy to be much more common than the frequency study showed.

So, the arguments are that it is super potent and that it is increasing in prevalence and prevalence on par with the top 8 (pending that info from allergists, etc), and that companies often are not aware it is an allergen and often will not disclose any information about sesame as an ingredient or potential cross contamination.  (Most companies will give information about the risk of xcontam with the top 8.)  When you combine all these factors, not requiring sesame to be labeled is a very dangerous situation.  It's super potency means trace exposure can cause reactions.  But companies are not nearly as aware of sesame as an allergen as they are of the top 8 and many still do not take precautions to keep sesame from cross contaminating other foods.  And it can be in foods and not listed on labels and companies often will not give any information about this to consumers. 

As for an argument for other FA people, I would just politely and positively ask for their help in supporting this new FA legislation.  Give simple, easy, directions on something they can do (sign the CSPI petition) and have it be something that doesn't take much time in their busy days to do. 

Seriously, I want to support this and I'm not 100% certain if I signed both or only one of the petitions and if so, which one.  If even someone like me is confused the average person who would support this might not even realize all this is happening. 

As for food allergy orgs, I would let them know that top allergists are not supporting this, that the FDA is listening to CSPI and is going to consider the petition and here is what they can do to help make this happen.  I would let them know as soon as any one org gives a written statement that that is the case to help encourage all of them to support it as well. 

[lakeswimr]

I think at this point CSPI needs to let us know how we can best help & imo any updates to Brian's petition, at this point, should be approved by CSPI so that we are all on the same page, coordinating our efforts, speaking with one voice.

I agree. 

As for highly refined sesame oil--I think that some food scientists, not allergists, would be the one to ask about that.  I would assume that highly refined sesame oil, if such a thing is even used in foods, would be OK for most sesame-allergic but I'm not a food scientists.

[ninjaroll]

Sesame oil was discussed at the meeting - the FDA folks asked if sesame oil was like peanut oil in that (in theory) it would be refined to the point of not having the protein.  I think they wanted to know if we were asking that sesame oil be labeled as well but not in a threshold sense, just about the binary proposition of it being allergic (or not). 

My understanding is that sesame oil is often unrefined which means it still has proteins that can cause a rxn.  That being said, I would think that FDA could still use the same sort of regulatory language for sesame about highly refined oil not needing to be labeled as it does the major food allergens ... now whether sesame oil could ever meet that highly refined definition is a question for experts like allergists ... but FDA could take the same approach it does with the major allergens.

What the allergists won't be able to take into account is that sesame oil is typically not a domestic product and all product entry into US commerce is determined by human judgment interpreting classification according to the HTS. If there's no distinction in production and no distinction upon classification upon entry its status is one of regulation not truly measurable for allergenic purposes.

It may be distinguishable more if you buy by the bottle because the manufacturer for marketing purposes may choose to extoll the virtue of its cold-pressed method - which is still likely from imported whole sesame seeds it processes at facility. But as a flavor or spice the oil is more likely used than seeds whole or ground. Whether the seeds whole or ground are more likely to be disclosed under current voluntary manufacturer custom than the use of oil I don't think is a minor point. Usually it's the oil that is considered the flavoring agent amongst cuisines where the use of sesame is native, the seeds whole or ground for texture with or without imparting a strong flavor.

That is what I see as a major difference between peanut and sesame, as one is most likely a protected domestic product we know to be high heat processed for refinement, the other largely manufactured elsewhere with little to distinguish the extraction method. This is if the oil issue is to be tackled at all for exemption by framing it "like peanut" according to FALCPA.

In that sense there is another gatekeeper here that does not much exist for peanut: CBP.

[LinksEtc]

As for highly refined sesame oil--I think that some food scientists, not allergists, would be the one to ask about that.  I would assume that highly refined sesame oil, if such a thing is even used in foods, would be OK for most sesame-allergic but I'm not a food scientists.

I could open a big discussion about this, but probably wouldn't be helpful ...


Anyway, I won't do anything else related to the sesame petition until/unless requested to take action by CSPI and/or Homa.           

[hsw24]

Well, folks, I tried: https://ohmahdeehness.wordpress.com/2015/05/22/statement-from-fare-regarding-sesame-labeling/

This was just one avenue though, I've got a lot more fight left in me!  I'm glad to have a firm response because so many were wondering what FARE's position was.  Now we know and can plan accordingly.  I have a call with KFA I'm coordinating scheduling and I still have to write to FAACT (maybe after the holiday weekend).  Given that the FDA has regulated labeling carmine because of it being an allergen, I think the attempt to get sesame labeled through a similar process is very worth pursuing.  Also, the statement from FARE acknowledged hundreds of thousands affected so that's good to see. 

[lakeswimr]

I'm glad they are going to create some new sesame resources.  Their resources to date have not been enough.  I hope the new resources will be good. 

I wonder why they are going the route of exploring if they can get sesame covered by FALCPA rather than the CSPI petition.  I know that FAAN told me many times that if enough people were found to have sesame allergy based on a prevalence study it would be automatically covered, something that turns out to not be the case.  I'm not sure how they got that idea. 

They have not done enough for the non top 8 yet so if they do more, that will be a good thing.