"FDA Urged to Require Better Labeling of Sesame, an Allergen"
http://cspinet.org/new/201411181.html#.VGt4TV0SNvQ.twitter (http://cspinet.org/new/201411181.html#.VGt4TV0SNvQ.twitter)
QuoteThe Center for Science in the Public Interest is asking the Food and Drug Administration to require that sesame be disclosed on food labels in the same manner as milk, eggs, fish, shellfish, tree nuts, peanuts, wheat, and soy are disclosed.
My fingers and toes are crossed!
Maybe FAS could tweet when McC gets a chance?
Oh Please, Please, Please let it happen!!!
:thumbsup: :crossed:
It would be great. And the little part of me that is immature would like to call up those companies that said they would not give me any info on sesame unless the law changed and revisit that topic. :P
:hiding: head smack ... I've just been waiting to see the docket # in my FDA email lists or from CSPI.
I was thinking that it was taking too long so I turned to my old friend google ...
and there it was ... Regulations.gov docket FDA-2014-P-2035
I called FDA & they said the comment period will remain open until FDA gives a formal response, no later than 5/25.
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Comments based on "science", I think, would be helpful from a few of us, if we have time since I have no idea if the major allergy orgs are going to get involved at all with this.
Comments from "individual consumers" are reviewed by FDA, but not posted on the regulations.gov site.
If we want to submit a comment as a group, that's also an option.
Anyway ......
If I become a bit quiet ... not to worry, I'm just busy. :evil:
#SesamePetition
Quote from: LinksEtc on January 14, 2015, 11:06:36 AM
If we want to submit a comment as a group, that's also an option.
^My vote.
Quote from: guess on January 14, 2015, 11:13:02 AM
Quote from: LinksEtc on January 14, 2015, 11:06:36 AM
If we want to submit a comment as a group, that's also an option.
^My vote.
Whatever you all want is fine ... individual and/or group ... I'm happy to do most of the work ...
think about it & let me know. Can pm or email me also.
I tried to read it......................I'm such a SAHM. I googled what you typed twice, both different search results....none of them leading me to sesame anything - LOL! Infertility, invitro, laser something, weight management.....................
and this on the FDA site: Sorry, we couldn't find anything that matched "FDA-2014-P-2035
Quote from: PurpleCat on January 14, 2015, 01:51:00 PM
I tried to read it......................I'm such a SAHM. I googled what you typed twice, both different search results....none of them leading me to sesame anything - LOL! Infertility, invitro, laser something, weight management.....................
and this on the FDA site: Sorry, we couldn't find anything that matched "FDA-2014-P-2035
Lol PurpleCat ...
1) Go to Regulations.gov
2) Where it says "Search" , plug in the following: FDA-2014-P-2035
(Then click on search)
3) You should see
QuoteCitizen Petition From Dr. Carla M. Davis
Other by FDA on 12/02/2014 ID: FDA-2014-P-2035-0001
Comment Now! Open Docket Folder
4) You can open the docket and look around or you can click on the "comment now" button and leave your own comment.
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There's not much to see at this point, but consumers and industry will probably start leaving comments ... many of which will be posted for us to read.
btw, don't underestimate us SAHMs. :smooch:
Thank you!
Wow, that is quite a read. I mean I know all of this, I live it with DD. But still, to see it in writing. As I was reading I just kept seeing her during her sesame reaction. One day in her shoes would show them just how scary it can be.
She recently got a sample of Clinique moisturizer and said Mom, I have to toss this, it has sesame oil in it. Loud and clear, right on the label, thank you Clinique, even on a sample, goodbye moisturizer. She read the label, she did not try it first - gold star for DD. A good label is priceless.
This regulation could really make a difference for DD.
I commented. Thanks!
KFA retweeted about sesame :thumbsup: :heart: :smooch:
I hope they submit a comment ...
it's their decision ... I know they tend to focus on education & support.
(Also a big thank you to @FoodAllergyBuzz for the RT :heart: )
---------------------------
As far as I know, FARE & FAACT have not informed their members about the CSPI sesame petition ...
maybe I'm wrong.
Be nice Links. :-X
Repeat as necessary ... each group gets to decide their own advocacy priorities ... each group has done good things for the FA community.
---------------------------
I know the different FA groups don't always get along, but I do hope that we can all work together as a community to get sesame labeled. This is so important & it can save lives.
---------------------------
Anyway, I know how I feel about this issue & it's time to write it down. :)
I have the business card of FARE's Manager of Online Community. I'll deposit that straight to your inbox.
Quote from: guess on January 15, 2015, 11:34:09 AM
I have the business card of FARE's Manager of Online Community. I'll deposit that straight to your inbox.
Thanks, but don't bother. Many of their medical adv signed the petition ... they know all about it.
The FA-Jedi in me senses conflict ... the
dark side of FARRP & sponsors ... and the Jedi way of truly advocating for us.
Again, maybe I'm wrong. I would like to be wrong. Maybe they are preparing an awesome comment as we post.
Stop.now.Links.
:-X
Do you want me to try? In other words, is the mission objective to secure that tweet? By day's end?
Quote from: guess on January 15, 2015, 11:59:38 AM
Do you want me to try? In other words, is the mission objective to secure that tweet? By day's end?
Sure, you can try ... maybe you can find out why they have been so quiet about it ... are they working hard behind the scenes ... or are they not going to support it (if so, why?).
The objective would be to send an email to their members (many have sesame allergy & would probably like the opportunity to comment on this) & have them tweet, Facebook, etc.
The real ? for me is whether they are planning on writing a comment of support to FDA.
@FoodAllergyBuzz :smooch:
"Food Allergy Petition: Add Sesame to FDA's List of Top Food Allergens"
http://www.foodallergybuzz.com/2015/01/food-allergy-petition-add-sesame-to.html (http://www.foodallergybuzz.com/2015/01/food-allergy-petition-add-sesame-to.html)
QuoteBack in 2008, I wrote a post which I felt very strongly about and still do--Is FDA's List of Top Allergens Complete? I was trying to promote more discussion of the idea to add sesame--a common hidden ingredient in many foods--to FDA's list of top food allergens.
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A trip down memory lane :)
http://foodallergysupport.olicentral.com/index.php?action=page;sa=Sesame_Labeling2 (http://foodallergysupport.olicentral.com/index.php?action=page;sa=Sesame_Labeling2)
jenniferb
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The kids are away this weekend ... will not get another opportunity like this.
get.to.work.Links
I did want to point out that the sesame petition also recommends ...
QuoteFDA should therefore also investigate the prevalence and severity of allergic reactions to other seeds, including sunflower, poppy, caraway, and mustard seeds, to ascertain whether new safeguards should also be established to clearly indicate presence of other seed allergens in addition to sesame.
btw ... I know that I can get a bit carried away with this topic :hiding: (I've been posting about it for what - 6 years?) ...
so if I'm annoying anyone, just let me know in a pm and I'll save some spots and not keep bumping.
100% support and trust.
Very grateful for all you've done 💗
:heart:
"Sesame allergy: a growing food allergy of global proportions?"
Venu Gangur, DVM, MVS, PhD*†; Caleb Kelly, BS*; and Lalitha Navuluri, DVM*
QuoteWe hope that the present article provides an overview of the seriousness of sesame allergy that might help the FDA consider including this food in the major allergen listing for labeling purpose in the United States. Inclusion of sesame in the allergen listing would be of great benefit for labeling-based prevention of life-threatening sesame allergy among US children and adults."
I think that I :heart: Dr.Gangur.
Nice! :)
Currently on page 5 ...
you know, there's just so much helpful information I've collected over the years.
:evil:
It.will.feel.so.good.to.get.this.done.
Well, I submitted.
It's done.
I didn't go for "perfect" ... just "good enough".
--------------------------
Just FYI, I submitted it from a "consumer group", not as an "individual consumer", so hopefully it will soon be posted to regulations.gov.
I wrote it was from "A group of consumers from foodallergysupport.com" ... so not all of us (b/c I can't speak for all of you :P) .... just a group of us :) .
I need to get a comment in! Glad you're done with yours!
I got an email about submitting a comment. I clicked link and then had no clue what to write. Any input on what comment would have the most impact?
Quote from: hsw24 on January 22, 2015, 12:25:22 PM
I need to get a comment in! Glad you're done with yours!
Homa,
I'm out now, but if you want, I can email you my comment later .... maybe it will provide some inspiration :evil:. Try to submit as something other than "individual consumer" ... like maybe your Allergy Project group ... that way your comment will be
seen (& perhaps taken more seriously).
Quote from: momma2boys on January 22, 2015, 12:36:35 PM
I got an email about submitting a comment. I clicked link and then had no clue what to write. Any input on what comment would have the most impact?
I tried to think of what industry might argue when I wrote this last comment ... I had my pretend-I'm-a-lawyer-&-regulatory-expert hat on (which of course I'm not :P) .... & also my I-can-talk-allergy-studies-even-though-I'm-not-a-doc hat :).
Really, I would write about whatever you feel strongly about ... there is no "right" comment ... each of us will approach it in our own way. Speak from your heart. :smooch:
A couple of updates ...
FDA has started to process the sesame comments. To see:
Go to www.regulations.gov (http://www.regulations.gov)
Enter FDA-2014-P-2035
In the "Document Type" area, click "Public Submission"
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Currently, there are 11 posted, even though about 400 comments have been received .... that is because FDA doesn't currently post comments from "individual consumers" .... if you want to see those comments you have to file a FOIA request or (I think) go to the FDA reading room.
The comment from a group of us FASers is FDA-2014-P-2035-0006. For some reason, only the PDF format seems to be working. Grammar police, go easy on me ... all my close people here were too busy to help out much ... I know there are some mistakes like punctuation ... but overall, I'm happy with the content of the comment.
Brian's petition 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 (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) currently has over 5,600 signatures.
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FDA is expected to give a response by 5/25/2015 so if you want to be sure to get a comment in, make sure to submit it soon. Now, it's possible that their "response" might be something like "we need a hearing", but it could also be a full or partial decision ...
so for anybody interested, I'd recommend getting those comments in ASAP.
.
.
Links, I just read your comment on the FDA site and I'm doing a slow clap! It was knowledgeable and thoughtfully written. Excellent, excellent work.
Quote from: daisy madness on March 18, 2015, 09:12:58 PM
Links, I just read your comment on the FDA site and I'm doing a slow clap! It was knowledgeable and thoughtfully written. Excellent, excellent work.
Awwww, thank you for your kind words ... very much appreciated. :heart: :smooch:
Update:
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/10667425 (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/10667425)
QuoteMay 5, 2015 — The FDA has replied to our petition! Thanks for all your help with signatures and spreading the word! We're trying to schedule a time to sit down and talk about adding sesame seeds to product labels sometime this month!
Here's how you can still help -- Please spread the word again, so we can go into the meeting with lots of momentum in terms of numbers of signatures still being added to the petition. Post this petition on your social media pages and try to encourage more signatures. We don't want to go into the meeting with a "stale" petition that no one has looked at in several weeks. Thanks!
(bold mine)
Homa told me that she is attending the meeting.
I am hoping that some allergists (Hopkins, Sinai, etc.) will be going also, although I don't know this info.
Yea. Will post on FB.
Quote from: Macabre on May 07, 2015, 06:36:09 AM
Yea. Will post on FB.
Thanks McC. Do you think that it would help for FAS to RT @briheller tweet about this? It's up to you.
Was so happy to see Allergic Living tweet about the sesame petition today. :thumbsup: :heart:
There's not much time left before the FDA meeting.
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I feel kinda like crossing a boundary and asking my allergist to go to the meeting or to make sure a good allergist is there on our side ...
will.be.good ... kind of
will not ask directly. :hiding:
I have a feeling that my face may turn bright red at dd's next allergy appt.
You know, the goals of "toning it down" & "being a good mom" weren't compatible with this sesame stuff .... i get the feeling that "real" & "honest" are ok.
.
Homa is on her way to DC for the FDA sesame labeling meeting!
You can follow her on twitter at @woodrumlaw
:thumbsup:
:thumbsup:
Way to go Jedi Master Links
Quote from: ninjaroll on May 13, 2015, 03:11:20 PM
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.
So, Homa's on her way home ... I'll let her fill everybody in herself when she has a bit of time ...
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 (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)
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.
I don't want to say more, but I'd suggest waiting for Homa's update before following some of these suggestions.
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.
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/ (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.
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.
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.
@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.
(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.)
I think that the psychological harm of not having sesame labeled is underestimated.
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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.
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Please don't quote ... it's a little more personal than I usually get ... may delete later.
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.
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. :-X
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ETA:
https://mobile.twitter.com/TomVargheseJr/status/581846560981413889/photo/1 (https://mobile.twitter.com/TomVargheseJr/status/581846560981413889/photo/1)
:)
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.
Quote from: hsw24 on May 18, 2015, 12:01:40 PM
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."
Just rereading this part. Sigh.
Quote from: LinksEtc on May 18, 2015, 03:59:07 PM
Quote from: hsw24 on May 18, 2015, 12:01:40 PM
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."
Just rereading this part. Sigh.
Allergists are probably not trained in label reading. I think being an expert in food allergies in terms of diagnosing and anaphylaxis management is the main thing most do. I think most parents of food allergic children end up being more expert in everyday food allergic life, which is not a criticism about allergists. It is just natural.
I do think all allergists and food allergy organizations should make it VERY clear that if you deal with non-top 8 you MUST contact companies to be sure the food doesn't contain your allergen or you can't know. They should make it very clear that you can not tell just by label reading alone. That wasn't made clear to me and my son had multiple reactions. I learned that the hard way.
Please feel free to quote me. To give you more information about my son's reactions, one drop of a soy sauce caused his lips to swell big and eye swelling and hives and vomiting. One corn chip that was about 1/4 cm by 1/2 cm caused repetitive vomiting, stomach pain, and hives. I did not use the epi pen either time in part because according to the label, both foods should have been safe. Neither one had 'spice' or 'natural flavor' or any ambiguous words on the ingredient list. I called both companies and they both said that they didn't know sesame was an allergen, did not treat it as an allergen or clean for it and that there was definitely sesame in non-sesame foods. For me it isn't just about getting sesame labeled but also about getting companies to understand that sesame is even an allergen. I know labeling laws don't cover cross contamination but companies do actively try to avoid cross contamination with the top 8.
I do think the FDA could be considered right that if you do this for sesame, what is to stop having to do it for all foods. And it should be done for all foods. People can be allergic to any food and should not have to go through what I did and what my son did. However, sesame is unique in a couple ways. One way is the potency of sesame. Sesame and other seeds are super potent, as potent as peanut. I first read about this, *I believe*, in Dr. Young's 'Peanut Allergy Answer Book'. I believe it was in the first edition. I am not sure that the second edition has this. Apparently the 3rd edition does not from what I hear. But I have also read about it elsewhere and am asking someone at KWFA about this. If you do not have a source that talks about the potency issue, you might contact Dr. Young or, one of the allergists who signed the petition might provide a source.
The second thing unique about sesame is that it does seem to have the frequency. It has long been called the 9th most common food allergen. While food allergies vary from country to country in their frequency, Canada and the USA almost certainly should have very, very similar, if not identical lists. Sesame is a top allergen in Canada. I think Dr. Wood is another good source. The allergists who signed the petition could cite the approximate % of their patients with FAs who deal with sesame. We could also do an informal poll at KWFA on this topic. While not scientific, this would give us a rough estimate of how prevalent sesame is. Last I knew, KWFA had over 60,000 members so is a big pool poll. I seriously question the results of the last prevalence study that was tagged onto that peanut study. The results do not match what Dr. Woods says is true about his patients and it doesn't match was I seem to see at KWFA. My understanding is that a real frequency study would be very costly.
I think if all seeds were grouped together there would be numbers over many in the top 8 and I think that is probably already true of sesame alone.
If the only question is whether a food is an allergen then everything should be labeled as all foods can cause anaphylaxis. I don't think that is what the point of this petition is, though.
The last thing that might be special about sesame is the types of reactions it tends to cause. Any food can cause anapylaxis but a study found that certain tree nuts are the most likely foods to cause the most severe of reactions. I believe but am not certain that the same study listed seeds as a food most likely to cause very severe reactions.
Other foods, such as egg, certainly can cause anapylaxis and must be treated very carefully, but GI issues like a stomach ache and vomiting are common reactions to egg-allergic children.
I know this article was published a few years ago (the one about the foods most likely to cause the most serious of reactions). If you cite that, it would be helpful. Again, the allergists in the group might know this study. There is someone at KWFA (well, several people) who are very good about saving such links and studies so if you want me to ask them, please let me know.
Please use anything I have written that might be helpful.
Quote from: hsw24 on May 18, 2015, 09:44:20 AM
@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.
Links, I had similar experiences. People thought I was crazy when I tried to explain that label reading alone wasn't enough. They would show me new foods and ask if they were safe and I"d try to explain and they would get that look. We had issues with family not believing or understanding me but that is better now. We had many teachers and social groups not understand. Other parents didn't understand. It was very difficult. If even some allergists don't know that sesame doesn't have to be listed on food labels and the only way to know if a food has sesame in it or not is to contact companies (and that even then, many companies will refuse to give out any info), how could the average person?
i'm sorry you had such a rough time.
IMO sesame is one of the most difficult allergens to avoid. DS has had many other FAs and none have been nearly as difficult to avoid as sesame.
Quote from: lakeswimr on May 18, 2015, 04:58:39 PM
i'm sorry you had such a rough time.
:heart:
You were one of the first sesame moms that I met online .... it was always nice to have somebody to commiserate with ... you "got" the bad-labeling issues, understood them.
:smooch:
Quote from: LinksEtc on May 18, 2015, 06:17:10 PM
Quote from: lakeswimr on May 18, 2015, 04:58:39 PM
i'm sorry you had such a rough time.
:heart:
You were one of the first sesame moms that I met online .... it was always nice to have somebody to commiserate with ... you "got" the bad-labeling issues, understood them.
:smooch:
Yes, ditto. You were the first other person who really got what I was saying and had the same experiences. :heart:
Homa and Links,
I just send you both a message. Please check it and reply. Thank!
Got it!
I'm sitting here laughing by myself ... I figure why not share ...
Homa's
https://ohmahdeehness.wordpress.com/2015/05/18/lobbying-for-sesame-labeling-in-washington-d-c/ (https://ohmahdeehness.wordpress.com/2015/05/18/lobbying-for-sesame-labeling-in-washington-d-c/)
QuoteFinally, I got the feeling that the pending response to the Citizen Petition wasn't what it promised with the term "response."
made me think of this ...
Re: If you were an allergy researcher ... (http://foodallergysupport.olicentral.com/index.php/topic,7910.msg174060.html#msg174060)
Quote"Science." You keep using that word. I do not think it means what you think it means.
https://www.sciencebasedmedicine.org/science-you-keep-using-that-word-i-do-not-think-it-means-what-you-think-it-means/ (https://www.sciencebasedmedicine.org/science-you-keep-using-that-word-i-do-not-think-it-means-what-you-think-it-means/)
Man, I love Dave Gorski. :heart:
{ahem}
Carry on.
I'm going to speak in general terms ... not about any specific org ...
with this on my mind
Re: Docs helping patients to surf the internet (http://foodallergysupport.olicentral.com/index.php/topic,9007.msg181454.html#msg181454)
My opinion (which may or may not be right) is that patient orgs get their legitimacy from 2 primary sources:
1) Medical expert backing (medical boards, medical experts verifying org info).
2) Meeting patient needs.
So many top allergists backed the CSPI petition ... so many top allergy experts think that sesame should be labeled in the USA.
Patient need - of course sesame labeling is a huge unmet patient need.
Now an argument could be made by an org that their resources might be better spent on things like research ... they may legitimately feel that is where they will be able to help the most patients. However, there is a difference between not making sesame labeling a top priority & not lifting a finger to help ... not even sending an email to members informing of the CSPI petition ... not writing a short statement of support (that does not take many resources but shows that they are on our side, it shows intent to support us.)
BTW, these are my own thoughts ... not Homa's ... just my own as I wonder what the orgs will do.
In fact, if Homa or leaders here or my Yoda or CSPI think writing these thoughts causes more harm than good, then I will delete them.
Please don't quote in case I am asked to delete.
Was there a threshold element requiring disclosure in any part of the proposal? Refined oil? At times I get the sense that manufacturers are circling FALCPA with an eye on avoiding recalls through establishing threshold levels after the fact, or mounting challenges to transparency by reserving discretionary power of disclosure on heavily shared lines where cross contact is nearly an undisclosed ingredient.
Quote from: ninjaroll on May 20, 2015, 09:45:13 AM
Was there a threshold element requiring disclosure in any part of the proposal? Refined oil? At times I get the sense that manufacturers are circling FALCPA with an eye on avoiding recalls through establishing threshold levels after the fact, or mounting challenges to transparency by reserving discretionary power of disclosure on heavily shared lines where cross contact is nearly an undisclosed ingredient.
The petition is asking for sesame to be labeled in a way similar to the major food allergens so, for example, no hiding in flavors, must use word "sesame" on labels, use good manufacturing practices, etc.
Thresholds & advisory labeling are not decided for major food allergens, so also not an issue concerning this sesame petition.
For manufacturers, it makes sense that many would not want mandatory sesame labeling b/c that brings issues of $$$, liability, & accountability. That might explain why a company like GM (in my opinion) voluntarily labels for sesame yet backed the FARRP regulations comment advocating against currently mandating the labeling of sesame.
I think you've distilled the situation pretty well, Links - I think that looking at the way groups have power is useful because it is almost trying to force people to agree on a given issue instead of letting them all have their own take. As if the powers that be want people to hone in on a party line - the question is why?
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).
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. I also want to follow up on my email to FARE, they were busy with their conference this past weekend so maybe I'll email them Monday if I haven't heard back by then. I have a name of a contact for KFA and need to reach out to them. I didn't get a chance to reach out to FAACT yet. I'm not doing any of this in any special capacity, just kind of investigative to see if they have statements about this as it progresses. Just like you all, I want to help whatever way I can. Even when the original petition was filed by CSPI I expected the kind of sharing online that would generate support from the major organizations but it didn't ripple much so I hoped that actually going there and "reporting" on the experience might garner support but my wordiness probably caused people's eyes to glaze over! :-/
I hope that whatever happens, companies will not that cold pressed sesame oil (the type use very commonly in Asian foods and salad dressings-the main type of sesame oil used in this country) has its proteins so would need to be declared.
Do companies really use highly refined sesame oil? I haven't ever seen that for sale in any store anywhere.
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.
Of course, I have lots of thoughts :coffee: ...
won't be able to write them down all at once.
----------------------
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 (http://www.nytimes.com/2014/10/31/us/politics/pr-executives-western-energy-alliance-speech-taped.html?_r=0)
QuoteThe 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.
#1 ? for me right now:
Why has FARE remained silent on the sesame petition?
Only those on the very inside circles know.
------------------------------------------------------
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.
:pout:
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?
------------------------------------------------------
Again, please don't quote b/c I'm willing to delete if it will help our efforts.
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.
Quote from: lakeswimr on May 22, 2015, 07:30:42 AM
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 :P ... keep my passion in check ... this is why I have stayed out of this part of the effort.
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.
Quote from: hsw24 on May 21, 2015, 09:45:39 PM
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 :P) 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".
Quote from: hsw24 on May 21, 2015, 09:45:39 PM
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.
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.
Quote from: hsw24 on May 22, 2015, 07:45:04 AM
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.
Quote from: LinksEtc on May 22, 2015, 07:59:12 AM
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.
Quote from: LinksEtc on May 22, 2015, 07:55:46 AM
Quote from: hsw24 on May 21, 2015, 09:45:39 PM
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.
Quote from: lakeswimr on May 22, 2015, 08:52:30 AM
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. :heart: :smooch: :heart:
Well, folks, I tried: https://ohmahdeehness.wordpress.com/2015/05/22/statement-from-fare-regarding-sesame-labeling/ (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.
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.
I love your perspective, lakeswimr - there is a lot to be encouraged about - when I took the screen shot of their "other allergens" page I was noticing just how slim the resources were. Which is why when we were first diagnosed I turned to FAS and KFA for information. Like Links has mentioned, I would like to see a unified voice so we can get this done but all the groups are pretty splintered.
It is disappointing to me to see that their 'other allergens' page still does not clearly say that if you have a non-top 8 allergen your allergen can be in foods and not listed in food labels so you must contact companies in order to know if a food contains your allergen, particularly if there is any ambiguous wording like 'spice' or 'natural flavoring' in the ingredient list. I hope they understand this and include it in their new resources.
My son's various reactions to sesame were from me not having access to any doctor or resources that told me the above. And from no one letting me know that many companies do not know sesame is even an allergen so even if there is no ambiguous wording, it is important to call and ask about cross contamination. My son had needless reactions because I didn't have the right information. And to see that still that information isn't easily accessible is frustrating.
So, I do think it is hopeful that they are focusing some attention on seed allergies.
:)
Thanks, Homa.
If Homa doesn't mind, I'm going to put this FARE quote here:
QuoteImproving education and awareness are critical first steps, but FARE is also engaged in advocacy efforts to determine how FALCPA can allow for the addition of new common allergens, including sesame and other seeds. FARE is committed to working directly with law makers, government bodies, and our food allergy community leaders to advance these efforts to help improve the quality of life and health of patients with sesame allergy.
I'm happy that FARE will educate more about sesame. I hope that they will also educate more for
non-top8 in general ... they did not have good non-top8 info when dd was diagnosed ... I still remember FAAN sending me to FDA & FDA sending me to FAAN to learn the labeling rules. :-/
All food allergy patients/caregivers need food labeling education.
If FARE & CSPI had decided to work together & coordinate their efforts, I think that it would have given the FA community the best chance of getting sesame labeled during the next decade. It's good to know where they stand though.
If AAFA/KFA & FAACT can let Homa know where they stand, I think this would allow CSPI to better plan & guide us regarding what we can do to help.
Thank you Homa for all of your hard work. :heart:
There has been a steady decrease in staff retention at FARE of what I'm personally aware of, not just Lehr. Grain of salt and all with anonymous reviews on the internet. I'd like to see an open financial accounting of their relationship with Mylan with minimal redaction.
Food Allergy Research & Education Reviews
May 3, 2015
"Company needs major improvement! "
Former Employee - Regional Manager in McLean, VA
I worked at Food Allergy Research & Education (More than a year)
Doesn't Recommend
Negative Outlook
Pros
Working towards a purpose to find a cure for those living with food allergies. Loved working with the parents that had children with food allergies; planning regional walks to give the kids something to look forward to in their honor.
Cons
FARE was created after FAAN and FAI merged. Unfortunately, the new team in charge didnt make a smooth transition with the FAAN staff and supporters that continued on with FARE. A HORRIBLE atmosphere was created for the regional offices. Unrealistic goals that overworked the team causing a mass exodus of regional directors and managers. Many directors and managers resigned, or quit without notice due to adverse treatment. Supporters that were with the organization when it was FAAN, felt the direction of the organization changed. It became more about the bottom dollar than helping families with food allergies. A lot of strain was put on the regional offices due to the top team not having a well coordinated plan. Also, the atmosphere wasnt "open door" since the individuals that caused the strife were friends of the exec team - 4 friends that came from another organization, and there was not a way to provide constructive criticism without feeling like you would be retaliated against.Show Less
Advice to Management
I am no longer with the company, but I do keep in contact with current employees. Since the previous exec team left the organization, the climate has improved from a workload standpoint, BUT many directors still getaway with not working as much. They hardly show up to work because the current exec are not holding them accountable. No check-ins. Basically collecting checks and not coming to work. This leaves the regional team pulling all the weight. More turnover is inevitable. Sad because the company never really had a chance to be great because of the original team that overspent and padded their pockets while creating internal chaos.
That's interesting, but at the same time, I don't want to judge based on an anonymous review.
Oh well, we are not joining forces ...
Which got me thinking that it might be a nice time for some FALCPA history ....
Did you know that several groups filed petitions, each proposing somewhat different approaches? :)
-------------------------------------------
Re: Food Allergen Labeling: Using "common sense" when assessing safety (http://foodallergysupport.olicentral.com/index.php/topic,9422.msg153163.html#msg153163)
When Food Is Poison: The History, Consequences, and Limitations of the Food Allergen Labeling and Consumer Protection Act of 2004
By Laura E. Derrhttp://www.fdli.org/resources/resources-order-box-detail-view/when-food-is-poison-the-history-consequences-and-limitations-of-the-food-allergen-labeling-and-consumer-protection-act-of-2004 (http://www.fdli.org/resources/resources-order-box-detail-view/when-food-is-poison-the-history-consequences-and-limitations-of-the-food-allergen-labeling-and-consumer-protection-act-of-2004)
(James Kelly gave me permission to quote from paper)
Pages 102 & 103
QuoteThe first organized consumer movement to petition FDA for more comprehensive allergen labeling began in October 1997 by Food Allergy Survivors Together (FAST), a supportive group and website for individuals with food sensitivities.
QuoteMelissa Taylor, Petition for Clearer Food Labeling Food Allergy
QuoteThe FAST Petition called for FDA to end the spices, flavorings, and colorings exemption completely and to require the declaration of all source ingredients contained in those generic terms.
-----
QuoteIn 2000, nine state Attorneys General petitioned FDA to improve allergen labeling.
QuoteUnlike the FAST Petition, the Attorneys General Petition focused only on the Big Eight allergens.
-----
QuoteAnother major petition to FDA calling for improved allergen labeling was sent by CSPI in October 2001. See CSPI, Regulatory Comments and Petitions, Petition for Rules Regarding the Labeling and Manufacture of Foods Containing Allergenic Substances (Oct. 4, 2001)
-------------------------------------------
Soooo ... even if groups do work separately, I guess that the important thing is that the "get sesame labeled" ball has begun to roll.
-----------
Of course, there's nothing to stop regular FA people from supporting both efforts at once.
I do get the sense, though, that Homa & FAS will not fall into this FARE category: "our food allergy community leaders". :misspeak:
FARE's statement does say, 'FARE is also engaged in advocacy efforts to determine how FALCPA can allow for the addition of new common allergens, including sesame and other seeds.'
If they really accomplish this, it would be fantastic. I would like to know what they have done in this regard so far. It has been 11 years since I first spoke to FAAN about this issue.
They have not and are not clearly telling consumers how to avoid sesame. I pointed this out to them about 11 years ago and a few times since.
So, I hope they are actually going to do something on the labeling issue and I believe them that they will be making materials about avoiding sesame. I hope those materials are actually good and reflect an understanding of avoiding non-top 8.
For so many years reading, '90% of all food allergies are caused by the top 8 food allergens....' had me asking, 'and what do the other 10% do? What about us?'
I will say, that if FARE gets more than just sesame covered by FALCPA then that would be better than just getting sesame labeled. But I hope their pace is going to be much quicker than it has been regarding sesame thus far.
Quote from: lakeswimr on May 23, 2015, 06:08:15 AM
I will say, that if FARE gets more than just sesame covered by FALCPA then that would be better than just getting sesame labeled. But I hope their pace is going to be much quicker than it has been regarding sesame thus far.
Lakeswimr,
The CSPI petition also does leave this type of thing open as a possibility with this wording:
QuoteFDA should therefore also investigate the prevalence and severity of allergic reactions to other seeds, including sunflower, poppy, caraway, and mustard seeds, to ascertain whether new safeguards should also be established to clearly indicate presence of other seed allergens in addition to sesame.
Quote from: LinksEtc on May 22, 2015, 11:18:36 PM
That's interesting, but at the same time, I don't want to judge based on an anonymous review.
Judging without insight would be inadvisable in any circumstance. Oversight and transparency, however, are integral parts of doing business. The former is more of an unsubstantiated opinion where the latter is gathering facts, and the facts do support large turnover or "churn rate" as the more proper statistical term is used. The turnover was something I knew of through personal channels quite a while ago. And quite frankly open sources of information are legitimate sources of actionable intelligence with the sophistication of social media.
Regardless, this doesn't move sesame forward. On topic I would attribute it largely to the churn and number of projects FARE rather than lack of interest or priority. Many of the longer term people are simply not there.
I'm going to cut back on my FA time again, but if anyone needs me, pm me here or dm on twitter ...
willing to help if needed. :heart:
---------------------
ETA - linking to this other sesame thread:
sesame seeds labeling: US specific (laws, loopholes) (http://foodallergysupport.olicentral.com/index.php/topic,319.0.html)
This discussion is so refreshing - I think the history is especially instructive, as is thinking about the changing corporate culture of FARE. Individuals I meet from various organizations are supportive so the politics of the given entity as a whole do baffle me. Is it about sponsors? Is it about wanting to do fundraising? Heck, if they push for a change in the law, I'm in support but I'm hearing they want to focus on research for a cure. Maybe the attention on the CSPI petition will move this up the priority list.
Hugs to all of you, you've been fighting these battles longer than I have and your comments really help.
I can't speak about FARE but FAAN told me a number of times that getting sesame labeled or getting a sesame frequency study was low on their priority list. They asked, 'which is more important, finding a cure or labeling for sesame?'
Quote from: LinksEtc on May 23, 2015, 08:52:05 AM
I'm going to cut back on my FA time again, but if anyone needs me, pm me here or dm on twitter ...
willing to help if needed. :heart:
Take care. :) Same to you. PM me if you need me. I don't always check here daily but I will eventually see your message.
I had a couple more nagging thoughts before I give this sesame thing a rest again ....
-----------------------------------------------
Quote from: hsw24 on May 18, 2015, 12:01:40 PM
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."
Quote from: lakeswimr on May 18, 2015, 04:38:28 PM
Allergists are probably not trained in label reading. I think being an expert in food allergies in terms of diagnosing and anaphylaxis management is the main thing most do. I think most parents of food allergic children end up being more expert in everyday food allergic life, which is not a criticism about allergists. It is just natural.
I do think all allergists and food allergy organizations should make it VERY clear that if you deal with non-top 8 you MUST contact companies to be sure the food doesn't contain your allergen or you can't know. They should make it very clear that you can not tell just by label reading alone. That wasn't made clear to me and my son had multiple reactions. I learned that the hard way.
-----------------------------------------------
Re: Food Allergen Labeling: Using "common sense" when assessing safety (http://foodallergysupport.olicentral.com/index.php/topic,9422.msg153441.html#msg153441)
Quote from: LinksEtc on September 22, 2014, 07:18:12 PM
Re: Docs helping patients to surf the internet (http://foodallergysupport.olicentral.com/index.php/topic,9007.msg143205.html#msg143205)
Quote from: LinksEtc on July 01, 2014, 02:13:01 PM
Tweeted by @pash22
"Can patients get and use the information they need?"
http://www.kpmg.com/global/en/issuesandinsights/articlespublications/what-works/creating-new-value-with-patients/articles/pages/can-patients-get-and-use-information.aspx?utm_medium=social‐media&utm_campaign=2014-hc-what-works&utm_source=twitter&utm_content=gbl+2014+jul+27&utm_term=info+tw+promo (http://www.kpmg.com/global/en/issuesandinsights/articlespublications/what-works/creating-new-value-with-patients/articles/pages/can-patients-get-and-use-information.aspx?utm_medium=social‐media&utm_campaign=2014-hc-what-works&utm_source=twitter&utm_content=gbl+2014+jul+27&utm_term=info+tw+promo)
QuotePatients need information that is often very different from the information that doctors think they need.
Our research into patient groups across the world consistently showed that, what patients felt was crucial information was ignored by clinicians. In fact for some patients groups the biggest gap between what patients needed and what they got was information.
-----------------------------------------------
Re: Let's talk about anxiety (http://foodallergysupport.olicentral.com/index.php/topic,8230.msg114476.html#msg114476)
Quote from: LinksEtc on December 26, 2013, 10:52:36 AM
With FA, we know that the majority of reactions can be prevented, but it takes such constant vigilance which can be stressful. Plus, we have incomplete or sometimes incorrect labeling information to work with which, I think, is part of the reason FA people are so active online (which manufacturer/product do you trust type conversations). There's a million little risk-benefit calculations we do.
Re: Let's talk about anxiety (http://foodallergysupport.olicentral.com/index.php/topic,8230.msg113366.html#msg113366)
Quote from: CMdeux on December 18, 2013, 11:16:51 AM
Quote
Can allergists diagnose anxiety? Can mental health professionals truly understand the FA life and how some behavior (that may first appear to be over-the-top) might have a rational basis?
Unfortunately, while both groups SHOULD have insights, they often don't have a full enough picture to really distinguish for an individual just when anxiety crosses from 'rational' to 'irrational' but it doesn't stop them from making pronouncements about it. The best allergists seem to live with it themselves-- otherwise, they can't really fully grasp what it is to live with FA day after day. Harsh, but true. Similarly, mental health professionals too frequently seem to think that "food allergy" that can result in death is a "rare" thing that can't possibly apply to YOU... in which case, you need help with your "irrational" beliefs.
Quote
Have you ever been unfairly accused of being anxious?
Absolutely. Most hurtfully by my spouse and closest friends, by my mother, even. I have been vindicated many times over in the years since, but yes-- this was lonely and horrible beyond my words to explain it. I do think that this experience has left me with PTSD, every bit as much as any of the horrific life-threatening reactions that I have witnessed.
-----------------------------------------------
Re: Social Media (http://foodallergysupport.olicentral.com/index.php/topic,9647.msg163114.html#msg163114)
Quote from: LinksEtc on December 05, 2014, 10:24:56 AM
Tweeted by @michaelseid11
"Kim Vlasnik - ePatient Ignite! Talk"
https://m.youtube.com/watch?feature=youtu.be&v=HwiIZ8TnZJw (https://m.youtube.com/watch?feature=youtu.be&v=HwiIZ8TnZJw)
1:16
QuoteThe hard part of living with diabetes for me is the psychosocial impact. It's the cognitive burden of trying to manage a disease so insidious and pervasive and never getting a break from it.
2:30
Quotemy disease is not a punch line
3:47
Quotefinding a community of people who "get it"
-----------------------
Although many try, docs often can't "get it".
Tweeted by @kevinmd
"The cancer metamorphosis is different for each patient"
http://www.kevinmd.com/blog/2015/02/cancer-metamorphosis-different-patient.html (http://www.kevinmd.com/blog/2015/02/cancer-metamorphosis-different-patient.html)
QuoteNo matter how much family or medical caregivers try to empathize, to connect, to understand, surviving cancer is a deeply changing and highly personal experience. The patient I quoted at the start is a gifted, loving and highly experienced cancer provider, with three decades at cancer's bedside. None-the-less, she was astonished to experience the transformation in her own life, which is before and then after cancer.
-----------------------------------------------
Book:
Being MortalAuthor: Atul Gawande
Page 2
Quote"What tormented Ivan Ilyich most," Tolstoy writes, "was the deception, the lie, which for some reason they all accepted, that he was not dying but was simply ill
Quotedeath is not a subject that his doctors, friends, or family can countenance
QuoteNo one pitied him as he wished to be pitied
Quotecomforted
*********************************************************************************
ok, so where am I going with all of this ....
some of my thoughts ...
1) My opinion is that allergists need to understand labeling rules & limitations in order to best advise allergy families on avoidance. Especially for the non-top8, the risk of reaction should be balanced with quality of life & family mental health considerations (imo). Unless medically necessary, pls don't set almost impossibly high avoidance standards.
Re: Oral Food Challenges - Links & General Info (http://foodallergysupport.olicentral.com/index.php/topic,8623.msg128499.html#msg128499)
2) Docs & orgs sometimes complain about overstepping patients/forums ... at least in my case, I was somewhat a monster of their own making imo .... my needs were not being met ... in terms of "how to read a food label for sesame" education & for making advocating for better sesame labeling a priority.
3) Hopefully, sesame will get labeled. However, for those with other non-top8s, docs & FA orgs shouldn't leave patients/families feeling alone. Provide them with education on label reading. Empathize with & acknowledge how difficult their situation is. One of the worst things is when people misjudge risk and think that you are crazy ... they don't understand how difficult the situation is ... they think that a quick look at the label is all that is needed (which is usually not the case with non-top8s unless dealing with a high threshold).
So, finally, I'd just like to include a reminder to patients that I'm not an expert and that they should ask their allergist about any questions they may have about things discussed in this thread.
That.is.all.for.now.
I have never had a food allergy organization or allergist tell me I had to contact companies to find out if foods contained non-top 8 allergens. I figured that out myself, unfortunately the hard way. I had to tell allergists this because they didn't seem to know it themselves. Even those who knew sesame didn't have to be labeled didn't know it could be listed as 'spice' or 'natural flavor' or be in foods in enough amount to cause ana and not be on the label in any way, shape or form, even 'hidden' with ambiguous language. I think things are getting better but without sesame having to be labeled, it will be a risky allergy to have.
This is so true, Links: "Patients need information that is often very different from the information that doctors think they need. Our research into patient groups across the world consistently showed that, what patients felt was crucial information was ignored by clinicians. In fact for some patients groups the biggest gap between what patients needed and what they got was information."
I had a rant written out but decided against posting it. I'm just having a moment of feeling defeated. Tomorrow is another day, right?
That is so true. And please rant away. I'm sure many of us will be happy to join in with you. :grouphug:
Quote from: hsw24 on May 27, 2015, 11:29:11 PM
I had a rant written out but decided against posting it. I'm just having a moment of feeling defeated. Tomorrow is another day, right?
:grouphug:
--------
You might appreciate this link ...
"The Lost Art of the Unsent Angry Letter"
http://www.nytimes.com/2014/03/23/opinion/sunday/the-lost-art-of-the-unsent-angry-letter.html?_r=0 (http://www.nytimes.com/2014/03/23/opinion/sunday/the-lost-art-of-the-unsent-angry-letter.html?_r=0)
QuoteAmong public figures who need to think twice about their choice of words, the unsent angry letter has a venerable tradition. Its purpose is twofold. It serves as a type of emotional catharsis, a way to let it all out without the repercussions of true engagement. And it acts as a strategic catharsis, an exercise in saying what you really think, which Mark Twain (himself a notable non-sender of correspondence) believed provided "unallowable frankness & freedom."
--------
& we have our OT Vent&Delete thread ... but it is the internet ... no guarantee of privacy.
& of course pm's
--------
I have found certain things very disheartening about this process ... but, you know, regular sesame-allergic people want this ... it will help them greatly. Top allergists think sesame should be labeled.
This whole thing has made me appreciate FAS policy re commercial posters & sponsors more. We have no conflicts of interest.
---
I think that many see our group as trouble & it's true that we can be a little rambunctious, but I think many of us fall into this category:
Re: If you were an allergy researcher ... (http://foodallergysupport.olicentral.com/index.php/topic,7910.msg162160.html#msg162160)
Quote from: LinksEtc on November 25, 2014, 05:53:10 PM
Tweeted by @99u
"The Most Undervalued Employee in Your Business"
http://www.inc.com/laura-montini/the-most-undervalued-employee-at-any-organization.html (http://www.inc.com/laura-montini/the-most-undervalued-employee-at-any-organization.html)
Quote"Disagreeable givers are the people who, on the surface, are rough and tough, but ultimately have others' best interests at heart," Grant said. "They are the people who are willing to give you the critical feedback that you don't want to hear--but you need to hear."
This is probably going to be a long road.
See what AAFA decides to do ...
Then you & CSPI can better plan.
There are many who are willing to work together.
There will probably be a lot of waiting time when patients/consumers don't have to do much ... just let this sit in the background.
:heart:
--------------
ETA - I was just wondering if I will read about Homa & her sesame advocacy in a FDLI paper someday.
:)
...
Quote from: ninjaroll on May 28, 2015, 08:39:11 AM
Have you considered a topical op-ed submission to immunology journals? Whatsoever shall be opined could be couched within the relevant, recent process with the FDA. Consumer protection and food science trade journals would be a great placement as well, it's both much easier for one to refer to academic pubs and harder for opposition to dismiss an academic pub even if it's a little sneaky to get it in as an op-ed.
I'm not sure that I'm following you NR ... what would be the benefit of submissions to those journals?
Who would we be trying to inform/influence? I wouldn't feel comfy submitting something to an immun journal ... if I tried such a thing, one of these :hiding: would not be enough to bring to dd's next allergy appt ... overstepping way too much, I think. Most of the allergists on twitter have been very quiet about the whole thing even though I'm 99% sure that most know about the petition ... not sure why that is ... maybe many are involved with the orgs that aren't on board? So much of the FA community politics are a mystery to me. Industry politics & FDA politics, I feel that I somewhat understand.
-----
Now ... one weakness so far has been reaching the sesame-allergic folks who are not active with FA social media. A lot of them are probably on FARE's email list, which of course, is no good to us. How do we reach them through other means? Shows like GMA, popular mags, etc.? Any ideas? Also, Homa & CSPI are doing a lot of effort to help the FA community ... maybe CSPI could set up a sesame fund so people could help them out with donations?
Anyway, I'm glad that CSPI has a lot of experience with FDA petitions. I figure, at this point, I'll only be active with this if they request some kind of help/action.
Quote from: ninjaroll on May 28, 2015, 08:39:11 AM
Quote
In a nutshell, that is my job: a professional skeptic. I act as an agent of positive change within the Department by having the freedom to be independent and objective and to speak truth to power. I am here to ask the difficult questions, to challenge...
You know, I hear a lot about forums containing bad info & certainly that is often true ... but I have a suspicion that what sometimes annoys/infuriates more is the challenging (even when polite & from a solid knowledge base) ... it goes against the top-down culture.
Quote from: ninjaroll on May 28, 2015, 08:39:11 AM
what motivates us...
QuoteA mother's love for her child is like nothing else in the world. It knows no law, no pity. It dares all things and crushes down remorselessly all that stands in its path.
Yeah, don't mess with the moms. :)
Quote from: ninjaroll on May 28, 2015, 08:39:11 AM
and why community organization matters.
Quote
"... no people, however warlike in spirit and ambition, in natural courage and self-confidence, can be made at once, by uniforms and guns, a military force. Until they learn drill and discipline, they are a mob..."
-William Howard Taft
Whatever else we each were before LTFA, are in addition to LTFA, now we speak truth to power but until and unless we are disciplined we are a mob. Yes, FAS does have a charter of independence, but it attracts those with disciplined key skills as well.
We have some very educated & smart members ... this, I think, is something that many would not expect.
Re: Docs helping patients to surf the internet (http://foodallergysupport.olicentral.com/index.php/topic,9007.msg141679.html#msg141679)
Quote from: LinksEtc on June 15, 2014, 10:10:39 PM
Tweeted by @SusannahFox
"The internet spins both ways"
http://susannahfox.com/2014/06/18/the-internet-spins-both-ways/ (http://susannahfox.com/2014/06/18/the-internet-spins-both-ways/)
QuoteDid you know some doctors once had a hand signal to warn their colleagues about internet-using patients?
Quotethe internet can help spin conversations toward misinformation or toward enlightenment
I know Homa posted about it in the sesame FB group.
What I think would be helpful would be to create some memes or other graphics as part of a social media strategy.
I am not even sure what the process for things is going forward and I know I can't explain it to friends. If there is something that is still actionable by people, having an extremely concise statement and image with a link to take the action would be great. Like the campaign for TF.
Is there something that is still actionable for the public? And if so, can we reduce it to 150 words (that will likely need to get edited down from there)?
Quote from: Macabre on May 28, 2015, 06:37:56 PM
I know Homa posted about it in the sesame FB group.
What I think would be helpful would be to create some memes or other graphics as part of a social media strategy.
I am not even sure what the process for things is going forward and I know I can't explain it to friends. If there is something that is still actionable by people, having an extremely concise statement and image with a link to take the action would be great. Like the campaign for TF.
Is there something that is still actionable for the public? And if so, can we reduce it to 150 words (that will likely need to get edited down from there)?
Yes, this.
Sorry I've been away! Catching up now... I've been trying to think of a meme, I guess the question is what we want conveyed. The hidden aspects? I once got a lot of shares of a blog post that had a photo of a bag of spinach with a nut warning on it so maybe a label we know has sesame but doesn't list it? Then we could do a caption like a true/false question asking if there's sesame in that item, perhaps?
I think the issue is being able to explain things to others not in the loop, I had a call yesterday with someone who is writing an article about sesame labeling and they read me their piece in its current draft over the phone. They were telling me the key is to put a human face on an issue and we'd found someone willing to do that luckily so I'm hoping that is something that is share-able on social media that will reach a lot of people outside the usual spheres.
I am back and forth with KFA about scheduling a call but though FAACT acknowledged receipt of my email I haven't heard back.
I've been saying I only care that labeling happens so if attention ends up making FARE act the way they seem to be saying re: legislation, more power to them. In the meantime, I had an update today that the "Dear Colleague" letters have been drafted so that is another push to get a response from the FDA.
Thank you all!!!
I think the label is a good idea.
I like the quote, 'while other food allergy mothers were teaching their child to read food labels, I was teaching mine not to trust food labels. Sesame can be in foods and not listed on the label. Please help get sesame labeled.'
That image is very powerful H. And so is that quote Lakeswimmr. :)
"A Day in the Life: Lobbying for Sesame Labeling"
http://snacksafely.com/2015/06/a-day-in-the-life-lobbying-for-sesame-labeling/ (http://snacksafely.com/2015/06/a-day-in-the-life-lobbying-for-sesame-labeling/)
QuoteConsidering how lax US label disclosures of the FDA's "Top 8″ allergens can be, those with sesame allergies have a much harder time finding foods that are safe for their dietary restrictions. And if feedback from our blog is any indication, the incidence of sesame allergy is skyrocketing.
'Open Sesame' Are Not Always Magic Words
http://www.huffingtonpost.com/lianne-mandelbaum/open-sesame-not-always-magic-words_b_7482926.html (http://www.huffingtonpost.com/lianne-mandelbaum/open-sesame-not-always-magic-words_b_7482926.html)
QuoteWorld renowned professors of Pediatrics, Allergy and Immunology at Icahn School of Medicine at Mount Sinai, Dr. Scott Sicherer and Dr. Hugh Sampson who have researched the prevalence of food allergies, including sesame, are among those who have signed their names on a CPSI (Center for Science In the Public Interest) citizens petition currently under consideration (since November 2014) on the FDA docket that would require labeling of sesame in a manner similar to labeling requirements of the other top eight allergens.
Now to keep momentum going! :D
Quote from: hsw24 on June 09, 2015, 08:53:47 PM
Now to keep momentum going! :D
I say you go for the NYT, Wash Post, Chicago Tribune, etc. next. ;D
I feel like my sesame work is done ... this project is in great hands. :smooch:
Ninja,
I noticed you deleted some stuff ... if you want me to delete your quotes in my posts let me know, or if I'm not around, you can have a mod do it. Otherwise, I'll leave them as is.
Yes, I hope the momentum keeps going.
I can't seem to get people to share the HuffPo piece, I was hoping it would get more traction, but maybe labeling just doesn't get people thinking? I can't see why they wouldn't see it as a positive effort. Granted, with the big orgs being silent it isn't reaching a wide audience.
I sent you an email Homa.
Re: Docs helping patients to surf the internet (http://foodallergysupport.olicentral.com/index.php?topic=9007.msg158427#msg158427)
Tweeted by @michaelseid11
"Patients don't need permission."
http://bennettgamel.blogspot.com/2015/05/patients-dont-need-permission.html (http://bennettgamel.blogspot.com/2015/05/patients-dont-need-permission.html)
QuoteWhen I believe that change must begin from the top, I am unknowingly telling myself I can do nothing from the bottom.
QuoteI must go forward, whether my CF clinic, my hospital or the CF Foundation chooses to come along or not.
Quotethose who deal with this awful disease day in and day out, with no relief, have no time to wait for others to do it for us.
We have an opening for contact with Senators re: the CSPI petition - I'm not allowed to post about it generally so if anyone is interested, message me here or email me at homa at woodrumlaw dot com and I'll give you the details. :happydance:
Thank you!
Another update.
"Sesame Labeling Update – Senators Support CSPI's Labeling Efforts"
https://ohmahdeehness.wordpress.com/2015/06/24/sesame-labeling-update-senators-support-cspis-labeling-efforts/ (https://ohmahdeehness.wordpress.com/2015/06/24/sesame-labeling-update-senators-support-cspis-labeling-efforts/)
:thumbsup:
:clap: Now that's how it's done. Links, FA Jedi Master, in the most sincere conviction I can muster this is an incredible project gaining speed. Congratulations on getting traction.
Quote from: ninjaroll on June 24, 2015, 04:21:45 PM
:clap: Now that's how it's done. Links, FA Jedi Master, in the most sincere conviction I can muster this is an incredible project gaining speed. Congratulations on getting traction.
;D
It's not me anymore Ninja ... Homa & CSPI are leading the way :heart: .... I/we get to sit back & enjoy the show!
Links *is* a Jedi Master! Feeling like this will really come to pass! My KFA call was supposed to be tomorrow but they just rescheduled for July 2 so at least we have this news in the meantime!
Quote from: hsw24 on June 24, 2015, 06:35:08 PM
Links *is* a Jedi Master!
:smooch:
---------------------
Tweeted by @AACMaven
"Senate Dems urge FDA to issue labeling rule for sesame products"
http://thehill.com/regulation/246026-senate-dems-urge-fda-to-make-labeling-of-sesame-products-mandatory (http://thehill.com/regulation/246026-senate-dems-urge-fda-to-make-labeling-of-sesame-products-mandatory)
QuoteSenate Democrats are calling on the Obama administration to issue a mandatory labeling rule for products that contain sesame or sesame seeds.
:happydance:
Geeking out over here!!!
They actually have an error in that article ...
QuoteFALCPA does explicitly regulate sesame that's included in processed food as an allergen.
was so happy ... didn't notice that initially.
Tweeted by @NutFreeWok
MURPHY, BLUMENTHAL, MARKEY CALL ON FDA TO LABEL AND REGULATE ALL SESAME PRODUCTS
http://www.murphy.senate.gov/newsroom/press-releases/murphy-blumenthal-call-on-fda-to-label-and-regulate-all-sesame-products (http://www.murphy.senate.gov/newsroom/press-releases/murphy-blumenthal-call-on-fda-to-label-and-regulate-all-sesame-products)
Quote"Currently, the inclusion of sesame as a major allergen in processed food is not explicitly regulated by FALCPA, making it difficult for those with sesame allergy to determine which products may contain this allergen," said James R. Baker, Jr., MD, CEO of Food Allergy Research & Education (FARE), an organization representing the 15 million Americans with food allergies. "With a significant documented increase in the prevalence of sesame allergy, which can be life-threatening, we are pleased to see Senator Murphy bring attention to the need and means for improving labeling to help families managing food allergies keep themselves and their loved ones safe."
I get so frustrated that people won't support sesame labeling because they want better labeling on other things like cross contamination for the top 8, etc. Just looking at the amount of time it would take to roll out a label change for sesame makes me believe we need to take care of sesame NOW and then we can talk about rolling out other changes on the same schedule since manufacturers will be looking at changing things anyway. I love that Snack Safely is boosting the signal on sesame but I had to say something in response to their latest because I know people reading their piece will write off the sesame efforts as something that "isn't enough" for their own concerns: https://www.facebook.com/SnackSafely/posts/861392987280340 (https://www.facebook.com/SnackSafely/posts/861392987280340)
My KFA call was supposed to be today but they had to reschedule for next week - hope hope hoping that I can get a firm endorsement from them. I emailed FAACT again this morning - my last email was May 23rd so hopefully this update will spur some response.
It's extremely myopic for any stakeholder in allergy advocacy to ignore the inroads CSPI Sesame Petition has made. The process, the networking contacts, the cartographical value that is entirely transferable to subsequent efforts in regulatory updates. Trailblazers need the roller derby support model.
:grouphug: Homa.
This petition process is quite an emotional roller coaster.
Myopic is the right word for it! Thanks, guys... neat to see the Baker quote considering that FARE gave such a guarded statement before - I think what we need next is the meme idea mentioned upthread... maybe appealing to non top 8 folks with the "I teach my child not to trust labels..." theme? I just don't understand the "this isn't far reaching enough" approach when ninja is so right about mapping a course. I did try to Google what the roller derby model is but couldn't find it, though!
lol ... I also used google to try & figure out what Ninja was getting at w/ the roller derby analogy.
;D
I often struggle to keep up w/ her thought process. :bonking:
I think she will have to explain.
You throw your gal ahead, the one that's going to score for your team, at the cost of staying behind and block any attacks from opposition that would stop her. It must be true because I saw it on television once.
Quote from: ninjaroll on June 27, 2015, 10:26:53 AM
You throw your gal ahead, the one that's going to score for your team, at the cost of staying behind and block any attacks from opposition that would stop her. It must be true because I saw it on television once.
:)
Ahhh, that makes sense. I feel some are utilizing this strategy ... Homa, FAS, etc. ....
but a lot of the FA community isn't behaving much like a "team" ... me thinks "getting credit" & "being seen as the leader" may be highly important to some.
This was a merging of efforts (Homa, Brian, FAS, etc) but CSPI took the lead ... we should support them as they are using their resources & expertise to help the community.
I asked the FA orgs many times to advocate for sesame labeling over the years ... most said better sesame labeling would be good but that they were focused on other priorities ... it doesn't seem fair that they get bent out of shape when we finally move ahead without them ...
now FARE wants to do it
their way (instead of supporting our efforts by endorsing the CSPI petition, informing their members, etc. - steps that would be fairly easy for them to do) ... whatever.
Reminder - snark is not helpful here Links. Drop it.
Thinking nice thoughts of community & teamwork.
Homa, I just tried to give you a little push on twitter.
:smooch:
Love the roller derby analogy! And thank you, Links! It would be awesome if Allergic Living featured CSPI when all was said and done (wishful thinking). They are a great group of people and if this ultimately comes from a push outside the usual FA suspects, it means the story could reach other outlets for awareness.
FARE sent an email. Glad to see.
QuoteFARE Supports Calls for Addition of Sesame as a Major Food Allergen
QuoteLast week, U.S. Sens. Chris Murphy (D-Conn.), Richard Blumenthal (D-Conn.) and Ed Markey (D-Mass.) called on the U.S. Food and Drug Administration (FDA) to require labeling of products that contain sesame or sesame seeds.
It links to this:
http://www.murphy.senate.gov/newsroom/press-releases/murphy-blumenthal-call-on-fda-to-label-and-regulate-all-sesame-products?tr=y&auid=15752517 (http://www.murphy.senate.gov/newsroom/press-releases/murphy-blumenthal-call-on-fda-to-label-and-regulate-all-sesame-products?tr=y&auid=15752517)
Quote from: LinksEtc on June 30, 2015, 10:30:49 AM
FARE sent an email. Glad to see.
QuoteFARE Supports Calls for Addition of Sesame as a Major Food Allergen
QuoteLast week, U.S. Sens. Chris Murphy (D-Conn.), Richard Blumenthal (D-Conn.) and Ed Markey (D-Mass.) called on the U.S. Food and Drug Administration (FDA) to require labeling of products that contain sesame or sesame seeds.
It links to this:
http://www.murphy.senate.gov/newsroom/press-releases/murphy-blumenthal-call-on-fda-to-label-and-regulate-all-sesame-products?tr=y&auid=15752517 (http://www.murphy.senate.gov/newsroom/press-releases/murphy-blumenthal-call-on-fda-to-label-and-regulate-all-sesame-products?tr=y&auid=15752517)
That's great. I think that the bigger FA organizations will support this now that it has gone 'mainstream' via these senators. :)
I haven't seen the FARE email yet, ooo!
Did get a letter from one of my senators, though! https://ohmahdeehness.wordpress.com/2015/06/30/letter-from-senator-dean-heller-regarding-sesame-labeling/ (https://ohmahdeehness.wordpress.com/2015/06/30/letter-from-senator-dean-heller-regarding-sesame-labeling/)
Great job Homa.
:yes:
FARE Supports Calls for Addition of Sesame as a Major Food Allergen
Posted at 1:58 pm by FARE, on July 1, 2015
http://blog.foodallergy.org/2015/07/01/fare-supports-calls-for-addition-of-sesame-as-a-major-food-allergen/ (http://blog.foodallergy.org/2015/07/01/fare-supports-calls-for-addition-of-sesame-as-a-major-food-allergen/)
QuoteAs the leading advocacy organization representing the 15 million Americans with food allergies, FARE supports the addition of sesame to the list of "major food allergens" that are required to be identified on ingredient labels of processed foods.
Who knew the Senate was the best way to reach FARE? ;)
Quote from: hsw24 on July 02, 2015, 10:52:42 AM
Who knew the Senate was the best way to reach FARE? ;)
:-/
I've put a muzzle on my snarky side for the greater good.
I wanted to work with them all along.
Sigh.
----------
I figure any support for sesame labeling is a good thing. I'll take it.
Don't you have your AAFA call today?
Quote from: ninjaroll on June 26, 2015, 11:28:23 AM
It's extremely myopic for any stakeholder in allergy advocacy to ignore the inroads CSPI Sesame Petition has made. The process, the networking contacts, the cartographical value that is entirely transferable to subsequent efforts in regulatory updates. Trailblazers need the roller derby support model.
I was thinking in the future, CSPI might be the perfect partner for getting mandatory allergen labeling in restaurants like in Europe. I'm pretty sure that I'm done with advocacy stuff, but I get the feeling that some like Homa are just getting started. :)
Yeah, I was being snarky but it feels like a bit of an about gave.
KFA call was fantastic!!! So many ideas for how to tackle labeling transparency - I took tons of notes, hoping to write about it soon! Debating another DC trip, which made my husband roll his eyes...I just want to do everything I can!
Quote from: hsw24 on July 02, 2015, 04:09:31 PM
KFA call was fantastic!!! So many ideas for how to tackle labeling transparency - I took tons of notes, hoping to write about it soon!
So glad to hear :heart:.
Looking forward to reading more when you get the chance to write!
Homa, would you consider a GoFundMe for the trips?
Oh, no worries, I can manage the ticket and stay with friends. It's just the being away from the kids that gets tricky. The meeting I want to go to is at the end of August - right after school has started again. Decisions, decisions!
Quote from: hsw24 on June 26, 2015, 10:44:24 AM
I emailed FAACT again this morning - my last email was May 23rd so hopefully this update will spur some response.
Any news on that front?
Quote from: hsw24 on July 02, 2015, 11:20:52 PM
Oh, no worries, I can manage the ticket and stay with friends. It's just the being away from the kids that gets tricky. The meeting I want to go to is at the end of August - right after school has started again. Decisions, decisions!
Too true. I have a mandatory conference end of year. No matter how much my husband reassures me it's going to be fine I'll be on tenterhooks the entire time.
No reply from FAACT - I'm not sure why they post that email address on their website if they don't respond to inquiries even with some sort of auto response to confirm receipt. Hrm.
I know someone who might know someone's more direct contact information. Everyone is going to be on holiday until next week. Let's see what happens then.
Hmm, I could forward it to EGH - I have her e-mail address somewhere from when I did the whole conference thing. I'll calendar that for Monday so I don't disturb her weekend.
So much happened while I was on vacation! Wow.
I was interested to see some trickle down:
http://www.cosmeticsdesign.com/Regulation-Safety/Sesame-fated-to-be-labeled-as-an-allergen-by-the-FDA (http://www.cosmeticsdesign.com/Regulation-Safety/Sesame-fated-to-be-labeled-as-an-allergen-by-the-FDA)
Great link! I have to hunt and hunt for sesame free cosmetics - luckily some Clinique products have been good options for me when I have to get gussied up. ;D
Ninja, I got a vacation autoresponder from my latest email on the FAACT front, I'll let things simmer a bit more. I also emailed FARE to see if they'd put their blog post on the FDA docket as a support statement. Gave KFA the heads up as well.
Had a very encouraging phone call with FARE yesterday, and FAACT emailed back this week. My next to do is to get on the phone with CSPI and find out what they need next to move the process along!
Quote from: hsw24 on July 08, 2015, 09:18:30 AM
Had a very encouraging phone call with FARE yesterday, and FAACT emailed back this week. My next to do is to get on the phone with CSPI and find out what they need next to move the process along!
Homa - I've said it before & I'll say it here - I think you are amazing, a uniter.
You are probably one of the few people who could successfully work with all of the different groups/orgs involved ... (even though some of the groups/orgs can't seem to get along with each other :-/) ...
Very happy to see everybody communicating with you. :yes:
:heart:
:yes:
"Meet FARE's Champion of Stock Epinephrine Laws"
http://allergicliving.com/2015/07/08/meet-fares-champion-of-stock-epinephrine/1/ (http://allergicliving.com/2015/07/08/meet-fares-champion-of-stock-epinephrine/1/)
Quoteyour readers may have seen the recent press release from Senator Chris Murphy of Connecticut, along with Senators Blumenthal and Markey. FARE is supporting their letter to Acting Commissioner Ostroff at the FDA to expand FALCPA to include sesame as the 9th top allergen. We issued a statement of support, and there's a quotation from Dr. Jim Baker [FARE's CEO] in the press release.
She was very knowledgeable and nice when we spoke, funny timing to see the Allergic Living piece today!
So, FDA has posted this ... not really a surprise ... delaying their decision.
"Interim Response Letter from FDA CFSAN to Dr. Carla Davis, Texas Children's Hospital"
Regulations.gov
FDA-2014-P-2035-0014
http://www.regulations.gov/contentStreamer?documentId=FDA-2014-P-2035-0014&attachmentNumber=1&disposition=attachment&contentType=pdf (http://www.regulations.gov/contentStreamer?documentId=FDA-2014-P-2035-0014&attachmentNumber=1&disposition=attachment&contentType=pdf)
QuoteThis letter is in response to your petition (2014-P-2035), filed on November 25, 2014, requesting the Food and Drug Administration to require sesame based ingredients be listed by name (sesame) in the ingredients lists of all foods; and to add sesame to the FDA's list of allergens in Sec. 555.250 of the Statement of Policy for Labeling and Preventing Cross-contact of Common Food Allergens.
In accordance with 21 CFR 10.30(e)(2), this letter is to advise you that we have not been able to reach a decision on your petition within the first 180 days of its receipt because of other agency priorities and the limited availability of resources. We will complete our review of your petition and consider any amendments to our regulations as warranted and in the context of other program priorities within the Center.
Should you have additional questions, do not hesitate to contact us.
Just FYI ...
www.regulations.gov (http://www.regulations.gov)
FDA-2014-P-2035-0017
http://www.regulations.gov/#!documentDetail;D=FDA-2014-P-2035-0017 (http://www.regulations.gov/#!documentDetail;D=FDA-2014-P-2035-0017)
Quote
The following is a petition from 800+ physicians advocating labeling of sesame in the United States. Many of the physicians are pediatricians and allergists who agree they are seeing a rise in sesame allergy and not labeling is putting thousands of children and adults at risk.
---
I wish that we could read, but ...
Quote
Reason Restricted:
This attachment is restricted to show metadata only because it contains personally identifiable information data.
----
Very powerful.
:heart: :smooch: to the docs
Interesting, we were told by our first allergist (who was not great) that sesame was the next up and coming big one...and that was when DS was 4, he's 11 now.
I can tell you something of interest is coming next week re: sesame (on the 17th after 10am EST)!
Good interest or bad interest? :evil:
:thumbsup:
:happydance:
Hoping you all think it is of good interest but your candid opinions are more important to me than my characterization of it - I have been involved in getting the release reviewed and circulated so I think it is a positive step but how different outlets present it and how it is received remains to be seen. /vague, I know!!
I can confirm Allergic Living will run an article about it tomorrow. I've sent it to KFA, FARE, and Snack Safely as well. FAACT didn't reply to my offer of the advance report re: sesame labeling.
I am not sure what kind of coverage to put on my own site, if any, I think the more mainstream, the better. The FDA did respond to Senator Murphy last month and seemed to acknowledge the authority to change the regulation which was promising. I need to get that letter uploaded somewhere but I did provide it to Allergic Living earlier this week.
Here's a link to the article
http://allergicliving.com/2015/09/17/demand-for-sesame-to-be-added-to-top-allergens-list-gets-louder/ (http://allergicliving.com/2015/09/17/demand-for-sesame-to-be-added-to-top-allergens-list-gets-louder/)
YES!!! :happydance:
Now this article has to be picked up by mainstream media, because an article in Allergic Living is essentially preaching to the choir.
But, still... :thumbsup:
I'm trying to get the local paper interested - maybe in conjunction with some halloween coverage? Snack Safely posted this: http://snacksafely.com/2015/09/cspi-rips-food-manufacturers-calls-on-fda-to-designate-sesame-an-allergen/ (http://snacksafely.com/2015/09/cspi-rips-food-manufacturers-calls-on-fda-to-designate-sesame-an-allergen/)
I saw the article on Facebook this morning! Promising!