CSPI Sesame Petition filed!!!

[hsw24]

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? 

[GoingNuts]

That is so true.  And please rant away.  I'm sure many of us will be happy to join in with you. 

[LinksEtc]

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?

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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

Among 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."

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& we have our OT Vent&Delete thread ... but it is the internet ... no guarantee of privacy.

& of course pm's

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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. 

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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 ...

Tweeted by @99u

"The Most Undervalued Employee in Your Business"
http://www.inc.com/laura-montini/the-most-undervalued-employee-at-any-organization.html

"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."

[LinksEtc]

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.







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ETA - I was just wondering if I will read about Homa & her sesame advocacy in a FDLI paper someday.

[ninjaroll]

...

[LinksEtc]

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  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.

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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.

[LinksEtc]

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.

what motivates us...

A 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.   

and why community organization matters.

"... 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

Tweeted by @SusannahFox

"The internet spins both ways"
http://susannahfox.com/2014/06/18/the-internet-spins-both-ways/

Did you know some doctors once had a hand signal to warn their colleagues about internet-using patients?

the internet can help spin conversations toward misinformation or toward enlightenment

[Macabre]

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)?

[lakeswimr]

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. 

[hsw24]

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!!! 

[lakeswimr]

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.'

[Macabre]

That image is very powerful H. And so is that quote Lakeswimmr.

[LinksEtc]

"A Day in the Life: Lobbying for Sesame Labeling"
http://snacksafely.com/2015/06/a-day-in-the-life-lobbying-for-sesame-labeling/

Considering 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.

[LinksEtc]

'Open Sesame' Are Not Always Magic Words
http://www.huffingtonpost.com/lianne-mandelbaum/open-sesame-not-always-magic-words_b_7482926.html

World 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.

[hsw24]

Now to keep momentum going!