CSPI Sesame Petition filed!!!

[hsw24]

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.

[lakeswimr]

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.

[lakeswimr]

So, I do think it is hopeful that they are focusing some attention on seed allergies. 


Thanks, Homa. 

[LinksEtc]

If Homa doesn't mind, I'm going to put this FARE quote here:

Improving 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.   

[ninjaroll]

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.

[LinksEtc]

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

When Food Is Poison: The History, Consequences, and Limitations of the Food Allergen Labeling and Consumer Protection Act of 2004

By Laura E. Derr

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

The 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.

Melissa Taylor, Petition for Clearer Food Labeling Food Allergy

The 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.

-----

In 2000, nine state Attorneys General petitioned FDA to improve allergen labeling.

Unlike the FAST Petition, the Attorneys General Petition focused only on the Big Eight allergens.

-----

Another 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". 

[lakeswimr]

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.

[LinksEtc]

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:

FDA 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.

[ninjaroll]

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.

[LinksEtc]

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.     



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



ETA - linking to this other sesame thread:

sesame seeds labeling: US specific (laws, loopholes)

[hsw24]

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.

[lakeswimr]

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?'

[lakeswimr]

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.     

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.

[LinksEtc]

I had a couple more nagging thoughts before I give this sesame thing a rest again ....


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

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." 

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

Re: Docs helping patients to surf the internet

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

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.

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

Re: Let's talk about anxiety

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

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. 

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

Tweeted by @michaelseid11


"Kim Vlasnik - ePatient Ignite! Talk"
https://m.youtube.com/watch?feature=youtu.be&v=HwiIZ8TnZJw


1:16

The 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

my disease is not a punch line

3:47

finding 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

No 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 Mortal
Author:  Atul Gawande

Page 2

"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

death is not a subject that his doctors, friends, or family can countenance

No one pitied him as he wished to be pitied

comforted

*********************************************************************************



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

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.

[lakeswimr]

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.