Quote#FAACT speaking on #gettheFAACTs 4 keeping kids safe in school with @schoolnutrition Assoc. & National Peanut Board @PeanutRD @EleanorGarrow

Quote from: Beach Girl on August 08, 2014, 06:59:13 PM
Recently KWFA had a webinar on Flying With Food Allergies.  The doctor who spoke was a member of the National Peanut Board.  Of course, he insisted that there was no risk of a serious airborne reaction if people are eating peanuts on the plane.  We sent them a scathing email.  Their reply was that the doctor does not receive funds from the National Peanut Board, so even though he is a member he is unbiased.  I thought KWFA was better than that.

Quote from: IowaMom on August 17, 2014, 10:31:16 AM
Sooooo, they are thinking that this 4 year old girl was just faking it???  Maybe they should read this.

http://www.dailymail.co.uk/news/article-2724684/Nut-allergy-girl-went-anaphylactic-shock-plane-passenger-ignored-three-warnings-not-eat-nuts-board.html

QuoteThere is no evidence that has been able to show that such dust circulates.

QuoteApart from reactions where one eats a contaminated food, airline reactions most likely occur from allergen that may accumulate on surfaces. This we know happens in many different environments. On the plane, without being aware, one could potentially touch a surface that hadn't been wiped down first, and theoretically ingest some level of allergen.

Quote from: LinksEtc on August 22, 2014, 09:39:07 AM
"15 common food allergy myths, debunked"

http://www.latimes.com/ara-8091700101-20140811-adstory.html

Quote from: CMdeux on October 11, 2013, 10:07:28 AM
I would want to focus on systematic study of the "impossible" patients-- that is, those who react to "impossibly" small traces, or those who are allergic to MANY foods, or foods that are "not allergenic."

A better-designed study of aerosolized allergens-- with a focus on the super-potent nuts and seeds there, but also expanding into other fine dispersions like aerosolized flour/egg/milk.  That kind of thing.  We all know from experience that this is a HUGE problem in manufacturing for the groups in part A of my grand plan...

but I also would like a better study of it.

Quote from: CMdeux on June 02, 2013, 03:57:42 PM

Quote from: LinksEtc on June 02, 2013, 03:12:28 PM
Grocery Manufacturers Association GMA

FDA-2012-N-0711-0063

Quote
Moreover, GMA and the food associations who have joined this letter believe that the Agency should not require any recalls for packaged food products that may contain trace amounts of an undeclared allergen at or below the established threshold as the risk to human health would be extremely low.

This comment alone ought to give the FDA pause in considering any other commentary from GMA.

Because they are quite deliberately sidestepping any responsibility to allergic consumers by conflating risk to the GENERAL population ('extremely low') and that to highly sensitive allergic consumers (moderate to very high).

This suggests that they genuinely have no compunction about killing allergic consumers-- that some people don't, I don't know-- deserve (?) to be able to rely upon food safety and labels.



The notion that oils are hypoallergenic is also based on sampling methodology which is highly suspect, as the working group tasked with threshold determination back in 2004 rapidly discovered.  Those with the lowest thresholds are at greatest RISK OF FATALITY-- not just in a dose dependent manner, as one might anticipate, but in a non-linear fashion as well.

For those people, there may really not be a threshold above the current limit of determination.  I daresay that with sesame, cashew, and peanut in particular, there may not be a threshold above the limit of detection. 

What is problematic about ANY establishment of threshold for 'food safety/labeling' requirements is that it is based upon a confidence interval. 

That means that SOME of the most vulnerable population (that is, those very low-threshold allergic consumers) is going to be thrown under the bus.  The only real question is-- how many of them?

We don't even know the answer to this-- because there has never been a systematic effort to determine threshold for a wide enough swathe of clinical patients.  Those WILLING to undergo DBPCFC's are not necessarily a good population sample for the whole population, and good luck getting an IRB approval to do an oral challenge on a child who has been intubated after a skin prick test.

THAT end of the sensitivity spectrum is an unknown and undefined population.  It just is.  There's no way to get a good profile of those people without risking death for a few of them in the process.

So the real question is...

how badly do we want to know?  What's it worth to us as a community?

Quote
Tweeted by @CUsafepatient

"Not All "Patients" Are Created Equal"
http://sellingsickness.com/not-all-patients-are-created-equal/

QuotePatient engagement and satisfaction have become trendy concepts and we must be aware which "patient" voice is being used.   Industry likes to use front groups, and present its positions through "patients."

QuoteWe need to make sure the patient safety voice is not only represented, but can be heard over the noise of money, politics, and power.

Quote from: CMdeux on December 28, 2013, 02:43:54 PM
When she was five, her allergist espoused the opinion that sending her to school would be "work, but feasible."  He simply didn't believe in aerosol-provocation of systemic reactions.  I knew that he was wrong in DD's case, but no amount of MY opinion was going to budge him.  So I bided my time, and let him SEE that I wasn't crazy or over-reactive.  I graciously told him that we'd have to agree to disagree, because I knew what I'd seen.  We did reach common ground in that he conceded that any environment which was THAT contaminated was probably an unacceptably high risk for eventual inadvertent ingestion anyway, and so it was a good sign to "vacate the location" even if he didn't think that inhalation was a real "risk."  In and of itself, I mean.    I must say that my DH's skepticism a year before that hadn't done much to help my relationship with the allergist at that point in time, either.  Another story, that one.   

After four years of immunotherapy injections, he and his office staff had seen enough weird and impossible things from her that they believed me.    Completely.  Of course, I think that it also has helped that he now has had the personal, delightful experience of turning over a kid with about three times DD's threshold to a school setting, too... so he gets it now in a way that he seriously just couldn't wrap his head around previously.

Quote from: CMdeux on March 01, 2013, 10:46:10 PM
(This really surprised me.  Of course, I probably surprised him by stating baldly that while I respect his opinion, I can't believe that it is 100% correct for everyone.  In fact, I tartly pointed out at one point that I was pleased that physicians are seeing some of the things that I have been hearing from distraught parents for about nine years now.  Welcome to the impossible world of "my food allergy doesn't fit your theory."     )

Quote from: CMdeux on July 04, 2014, 12:18:46 PM
I continue to give back precisely because I will never forget what it was like to feel as though we were completely alone, because even the patient advocacy group that our physician told us about was saying that we must be hysterical, that we COULDN'T really have those needs, etc.

It was the most lonely and isolating experience I've ever had.  I don't say that lightly, by the way.  In comparison, it was MORE isolating that living with T1D, being a family member of a terminally ill loved one, living in a nuclear family with a person suffering from florid psychosis, and living in a highly abusive, dysfunctional home as a child.  MORE isolating.  MORE disheartening.  As noted, I do not say that lightly.

I've never forgotten what that felt like to me as a parent.  Despair-- that's what it felt like.   I would chew off a limb before I would turn my head away and know that by reaching out a hand or just whispering "You're not alone-- it gets better," I could lessen the emotional toll.     This is what family is supposed to do for us-- and it's what so few FA parents do experience with their families.  Being an outsider to EVERY human interaction is so incredibly difficult a journey-- and made more so when you also get the label of "choosing" to be that way, rather than any understanding that you really don't have a choice.

Quote from: LinksEtc on August 17, 2014, 11:12:14 AM
I will say that I see food industry influence (or the potential to influence) all over the FA world ... whether it's FARRP at FARE & FAACT, corporate sponsors for conferences, industry $ funding research,
etc.  Quite frankly, my opinion is that FARRP should NOT be in a leadership position in any FA org ... FA orgs that claim to represent the FA community should be OUR representatives .... talking/communicating with FARRP and/or industry is fine & necessary ... but it would be best if these cozy relationships were severed.

Even in that KFA flying webinar, Laurel Francoeur pointed out how food industry congressional lobbying negatively impacted the rights that FA families have when flying.  That was really interesting to me & was something that I had not known.

Quote from: LinksEtc on August 17, 2014, 11:12:14 AM
My dd does not currently have low thresholds to any food and industry approach to FA issues would probably work fine for families like mine ... at the same time, I fully trust that CM's dd is as sensitive as described ... when docs or orgs try telling me that those people don't exist or that their reactions are impossible ... a big red flag goes up in my mind.

Research on thresholds, school policy, etc. should be of the best quality ... transparency, integrity, honesty, best study design, a full disclosure of the study's limitations, etc.

Quote from: CMdeux on August 17, 2014, 12:00:07 PM
This is what I love about meeting people here, too, Links-- I would not have understood the plight of those who have a "non-Top-8" allergen without all of you.  So when I hear "it doesn't matter-- not a priority allergen" from anyone, now that serves as a huge red flag for me, as well.

 

I think that aiming regulation and policy at the median patient experience is morally wrong.  On many levels.  The people who SHOULD be in our minds as policy is debated are those for whom protections are necessary.  Those for whom those protections MUST exist if they are to have any kind of quality of life.  That's the entire gist of ADAA, really, and was the reason for ADA to begin with.  Trusting others to "just do the right thing" was NOT sufficient for those who were out on the edges of the distribution. 

Same thing with food allergy.  The majority are already living pretty normally and without a lot of worry and "separate-ness" in their lifestyle.  KWIM?  Honestly, that's not the definition of disabled, though.  I understand why most people with food allergy don't consider it a "disabling" condition.  I feel that way about my own and DH's allergies.  No question that I would probably never have a reason to invoke ADA on my behalf or my DH's.    DD's experience is profoundly different; so different that she and we might not even be experiencing the same condition, when you get right down to it.  DH and I have no real impairment in terms of socializing, traveling, education, etc. etc.   DD does.  At every turn.

Her life is hard.  Why on earth a few people with $$ where their humanity ought to reside insist upon making it harder still by denying that what she experiences is authentic and not "all in her head" is beyond me.  Well, it's not-- I have faced it every day for nearly a decade and a half, after all-- but it's disgusting beyond words.

Quote from: SilverLining on August 08, 2014, 07:01:41 PM
http://peanutallergyfacts.org/peanut-allergy-facts

QuoteAccording to the Food Allergy & Anaphylaxis Connection Team, for those who are severely allergic, ingesting even a trace amount of peanuts can cause a reaction, but skin contact and smelling peanuts are unlikely to cause systemic reactions or anaphylaxis.

Who is that?

Quote from: LinksEtc on August 08, 2014, 09:04:50 PM
I'm really not trying to cause trouble with my links    (well except maybe the FARRP & FDA ones b/c I want sesame labeled) ...

so much of what FARE, KFA, etc. have done is great & I really appreciate & they've helped so many & probably saved lives ...

but food industry influence with FA docs & orgs also makes me uncomfortable ... complete transparency is so important.

Quote from: CMdeux on August 08, 2014, 03:37:46 PM
Oh, well-- that's nice.  Apparently my child can't have actually HAD anaphylaxis from inhalation.  Good to know.   


Oh-- wait-- they don't actually SAY that it's impossible.  Clever, that.  They just say that it's-- like-- REALLY unlikely, and point out that "coughing, sneezing, and a runny nose" are really all that will happen.

QuoteMany people fear airborne allergens, but research indicates that ingestion is required for anaphylaxis to occur

QuoteThe National Peanut Board (NPB) has convened a Food Allergy Education Advisory Council

QuoteThe Allergy Council includes the following experts