CSPI Sesame Petition filed!!!

[LinksEtc]

Way to go Jedi Master Links

You make me smile.  I don't know about the "Master" thing ... but if I remember correctly, you're the one who so nicknamed me the FA-Jedi which I quite like.

I've been fighting the desire a lot lately to go to the dark snarky side ... which probably just wouldn`t be helpful ... must respect that my natural strength is not people skills and leave that to others.
Will try to concentrate on the positive ... a lot of progress has been made during this past year ... many worked together to make that happen.

I'm waiting to hear from Homa about the FDA sesame labeling meeting that was held today.

[LinksEtc]

So, Homa's on her way home ... I'll let her fill everybody in herself when she has a bit of time ...

[GoingNuts]

Please see update below:

https://www.change.org/p/fda-add-sesame-seeds-as-an-allergen-to-us-product-labeling-laws-require-them-to-be-disclosed-on-us-food-labels/u/10775981?tk=XziED4Jc0lHVAf_wdczHqa0Kt0Y8a-HllxMiBwvuA0o&utm_source=petition_update&utm_medium=email

[lakeswimr]

Good to hear the update.  There used to be more products that I knew contained sesame but didn't list it on the label. I hope that he can collect some good data on the things he requested.

It sounds like the FDA wants very specific examples with product names, etc.  I will write about our experience and the reactions my son had to products that did not list sesame in the ingredients but had xcontam with it. 

[LinksEtc]

I don't want to say more, but I'd suggest waiting for Homa's update before following some of these suggestions.

[LinksEtc]

Time for another internet break 4 me I think ... otherwise, I can't seem to resist being a PITA ...

too much passion for this topic, I have.

[hsw24]

I have been so swamped since I got back but I wanted to get *something* up about the trip - I have a call with CSPI this week to talk about next steps and I'm also coordinating with AAFA/KFA about support.  It's been observed that FARE may be taking the perspective of wanting to amend FALCPA instead of going the rule making route but that is just based on tweets from their conference this weekend.  One tweet even seemed to indicate a speaker thought sesame was on the same level as wheat re: allergies but of course with twitter things are so brief you can't get a good feel.

https://ohmahdeehness.wordpress.com/2015/05/18/lobbying-for-sesame-labeling-in-washington-d-c/

I'm going to try to contact my state Senators and Congress-folk about joining in the upcoming "Dear Colleague" letters that are being prepared for the Senate and House - I believe there's one letter for each and then reps sign off on them.  If anyone is itching for action, it might be a place to start exploring on a more local(ish) level. 

[lakeswimr]

Thank you for the update.  There are people here and at KWFA and I'm sure elsewhere who would be happy to help.  It would be VERY helpful to us if you would tell us exactly what we can do to be most helpful. 

[lakeswimr]

Thanks for the link to your blog.  That was very interesting.  Thank you for doing that advocacy work.

You wrote, 'they kept circling back to the concept of showing the harm that not labeling for sesame would be causing.'  I think one of the main things is that because sesame does not have to be listed in food labels, it can be in foods and consumers have no way to know.  In addition, because sesame is not considered a 'top allergen', companies tend to lack awareness of it as an allergen and tend to not clean for it. 

My child had multiple serious reactions to products that did not list sesame as an ingredient and didn't list 'spice' or 'natural flavor', either.  I called the companies and was told, "Oh, we didn't realize sesame was an allergen" and "we don't clean for it" and "our lines are littered with sesame seeds.  There is certainly sesame in the product." 

That is the harm that not having sesame be required to be labeled causes.  It causes serious reactions in children like my son.  No one warned me this could happen.  I found out the hard way.   That should not have to happen. 

I learned I had to call every company and when I did, I was often told they would not give me any information.  So, my son's diet was very, very restricted.

It took me two years of calling companies to find a bread that was safe for my child and 2 1/2 years to find a salad dressing.  Every bread company I called for those two years told me their products were made on the same equipment with sesame.  There was little to no awareness that sesame was an allergen among bread companies. 

I also found products that contained sesame but listed it as 'spice' or 'natural flavor'.  (There are additional words that mean sesame such as gingilly and till and others that Anaphylaxis Canada has on their how to read a label for sesame cards.)  And there were many companies that refused to give me any information about sesame so even if I did the right thing and called companies, I still could not get the information I needed to know if a food was safe for my child or not.

There is a quote in the petition that says, "while other food allergy mothers are teaching their child to always read labels, I am teaching mine that you can't trust labels."  This is something that has been so difficult for me to explain to others including family and my child's teachers.  Lack of understanding that with sesame allergy, you can't just simply read the label and know if a food is safe could lead people to accidentally feed children allergens.

Sesame is a super potent allergen.  Like peanuts, it takes 1000 less amount to cause a reaction than most other allergens.  Combining super potency with lack of labeling laws and lack of awareness on the part of many manufacturers and you create a risky situation for those dealing with sesame allergy. 

Those are the things that I want the FDA to know and those answer the FDA's question very well IMO.

[hsw24]

@lakeswimr - You are so very right on all fronts - I remember calling companies about my daughter's oat allergy and having them say "isn't that gluten free?" and wondering how they could be in the business of food without getting the basics.  I was surprised that after a long period of time talking about the life and death impact of knowing about the presence of a known allergen (they did not deny that sesame was an allergen), they wanted to imply that if FALCPA covered 90% of allergens for people, it would be some sort of slippery slope to cover more.  At one point Brian suggested a "seeds" label that would group sesame, mustard, etc. like the "tree nuts" classification which I was puzzled by but I think it was a signal that the conversation had veered into a question of prevalence.  They wanted data on how many people have sesame allergy but CSPI's representatives accurately (to me, anyway) stated that the only question should be "is this an allergen?" and if so, it needs to be regulated through labeling and to come up on an existing inspection framework.  Potency was one of our big talking points and I think it has to continue to be one.  May I save what you wrote for the next time I talk with CSPI?  Thank you so much for sharing.

[hsw24]

(And yes, I want to give updates as soon as I know how we should mobilize - Laura from CSPI emailed this morning saying she'd let me know more about what comes next later this week.)

[LinksEtc]

I think that the psychological harm of not having sesame labeled is underestimated.

--------------------


I feel like for years, I was in an impossible position:

Our first allergist told us to very strictly avoid ... even for shared equip that had been cleaned. 

Sesame is very potent & causes severe rxns so you don't want to mess up & hurt child.

Another non-allergist doc told close family member that dd didn't have a sesame allergy b/c blood test at time negative (latest blood test finally positive).  Instead of support, I pretty much got emotionally beat up on for years for trying to follow allergist advice.

2 allergists refused to do OFCs on dd b/c of rxn history & size of skin prick so I couldn't "prove" to family member that dd really had an allergy.  1 was going to do a challenge, but I think he had second thoughts b/c he never got to the "oral" part.

I couldn't tell if most food products met allergist's safety criteria b/c of lack of labeling.  People think you are being unnecessarily anxious, over-protective for not trusting the labels ... they don't understand the risk, they don't understand labeling inadequacies.

Something had to give ... it was like standing in a box & pounding on the sides ... better labeling, proof of allergy, permission not to be as strict ... something ...


In the end, events unfolded that pretty much broke me, I was the thing that gave out.   

--------------------


Anyway, things are great now ... I don't even need this labeling as much for our family as dd is able to currently tolerate small amounts of sesame (with allergist approval).  I would say that our current allergist is an expert in risk management & that this is really perfect for our family ... she's not going to make us go crazy with avoidance levels that are not medically necessary. 

Soooo ... let's just say that this whole thing has left me with an emotional scar ... but that scar has motivated me to see this sesame labeling thing through ... I know that this is something worth our efforts ... it is something that the food allergy community should work together on.  Sesame needs to be labeled in the USA.  We can save others from physical & psychological harm.

--------------------


Please don't quote ... it's a little more personal than I usually get ... may delete later.

[hsw24]

I'll try to reply without referencing anything specific in case you do delete what you shared, but the idea that allergists are willing to tell us "Avoid, Avoid, Avoid" but then when I approach them about labeling issues they tell me they either don't discuss them with patients or patients don't come to them with the concerns and it makes me wonder, you know?  It took us three tries to find an allergist that wasn't casual about the idea of anaphylaxis, they had this notion that if you have the epi you'll be fine but I kept saying "I don't wan't my child to react in the first place."  Recently there was an article on Asthma Allergies Children where they talked about a child being exposed to an allergen and the parent finding out that way that the blood test had been inaccurate - it reminded me of meeting with our allergist and having him say that I was "too good of a mom" when it came to avoidance because most families discover false positives through accidental exposure so we should have found out about the allergies E did outgrow, sooner.  There's no winning, is there? 

I had an email yesterday from a visitor to my blog who is anaphylactic to celery - it baffles me that anyone would want to conceal ingredients that are IgE mediated allergy triggers.  I am debating an outlet for grassroots efforts on the lines of interviewing companies that *do* label and giving it some sort of a catchy hashtag like #whywelabel to show that they're being decent corporate citizens.  But I don't want it to seem like I'm endorsing anyone, just maybe getting industry support for labeling in case the FDA is worried manufacturers will throw back their heads and howl?  Just thinking aloud, I guess.

I do think personal stories have an impact, we just need to get the decision makers to listen.

[LinksEtc]

I think we need to stay focused & not get sidetracked.

I empathize with those having other non-top8s ... I suspect that dd now has another non-top8 ...

but it is so clear to me that sesame is the allergen that absolutely needs to be labeled for now in terms of prevalence/potency/severity.  This issue has been neglected for too long.

Voluntary efforts are nice ... but again, I don't want to get sidetracked.  For consumers to be protected, sesame labeling must be mandatory, standardized, & enforceable ... every label, every time.  It must be given the same serious treatment by FDA & manufacturers as the current "top 8".  FDA knows this. 

At this point, in my mind, it's not about the data (more than enough info has been provided to FDA to justify labeling sesame) ... it's about politics .... is FDA going to do the right thing and protect public health ... will FDA delay this thing for a decade, putting so many at risk of serious harm/death ... will allergy orgs advocate for us ... will industry fight this hard or will they partner with us for the health of their customers ... politics.  I hope that people decide to do the right thing.


Enough Links.   


----------------


ETA:

https://mobile.twitter.com/TomVargheseJr/status/581846560981413889/photo/1

[ninjaroll]

With regard to regulatory compliance and trade I would point out that including sesame in top allergen labeling would be consistent with our largest trading partner. While there are other mandates involved in labeling compliance for trade, alignment would not hurt US manufacturers. It may even facilitate one move closer to a consistency that contributes positively to expanded distribution.