Sesame Labeling Update – Senators Support CSPI’s Labeling Efforts

I just received the following via CSPI – we met with Senator Murphy and staff from Senator Blumenthal’s office and Senator Markey’s office in May when I was in Washington, D.C.!   Since then, I’ve been on the lookout for problematic labels so I will share one of my finds here before pasting the release I received via CSPI.

Example of labeling as
Example of labeling as “tahini” instead of the allergen “sesame”

WASHINGTON – Today, U.S. Senator Chris Murphy (D-Conn.), a member of the U.S. Senate Health, Education, Labor, and Pensions Committee, U.S. Senator Richard Blumenthal (D-Conn.), and U.S. Senator Ed Markey (D-Mass.) called on the U.S. Food and Drug Administration (FDA) to take swift action to require labeling of products that contain sesame or sesame seeds. Currently, sesame is not required to be labeled as an allergen on food products, yet sesame allergies are growing in prevalence. The senators heard directly about the dangers and challenges individuals with sesame allergies face from not having accurate information about what is in their food. The senators wrote a letter to FDA Acting Commissioner Stephen Ostroff requesting that the agency require that sesame – one of the most common allergens in the United States – be listed specifically by name on ingredient lists and that sesame be included in inspections for cross-contact. 

“Given the severity and growing prevalence of sesame allergies, we respectfully ask the FDA to move expeditiously under its current authority to require sesame labeling and inspection of sesame cross-contact to help protect the health and safety of our constituents,” wrote the senators. “Without required uniform labeling of the presence of sesame, consumers with this serious allergy have no way of protecting themselves or their family members from its potentially life-threatening consequences. As Congress recognized when it passed FALCPA, accurate and comprehensive allergen labeling is essential.”

“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.”

The Center for Science in the Public Interest Chief Regulatory Affairs Attorney Laura MacCleery said, “Several hundred thousand Americans are allergic to sesame, and their allergy is no less serious and no less life-threatening than that of those allergic to peanuts, shellfish, or other common allergens. The Food and Drug Administration could easily protect these consumers by including sesame among the so-called Big 8 food allergens for purposes of labeling and education.  We’re grateful to Senator Murphy, Senator Blumenthal, Senator Markey, and others who similarly wish the FDA would follow the lead of Canada, the European Union, Australia, and other nations that require labeling of sesame and sesame-based ingredients.”

The full text of the letter is below:

The Honorable Stephen Ostroff

Acting Commissioner

Food and Drug Administration

10903 New Hampshire Avenue

Silver Spring, MD 20993

Dear Commissioner Ostroff:

We write to urge the Food and Drug Administration (FDA) to take swift action to require sesame seeds and sesame products to be labeled and regulated in a manner similar to the rules that apply to the eight current labeled major allergens.

Sesame is now one of the most prevalent, and most dangerous, food allergies in the United States.  When Congress passed the Food Allergen Labeling and Consumer Protection Act (FALCPA) in 2004 to require the labeling and regulation of allergens then considered the “Big 8” (milk, eggs, fish, shellfish, tree nuts, peanuts, wheat, and soy), it was thought that these categories covered around 90% of all allergies in the United States. However, if FALCPA were enacted today, sesame would be included on this list. Allergists consider sesame to be an emerging allergy concern, affecting an estimated 300,000 to 500,000 people in the United States.  Robert Wood, the director of the division of pediatric allergy and immunology at Johns Hopkins University School of Medicine, notes that sesame allergies “have probably increased more than any other type of food allergy over the past 10 to 20 years” and are “now clearly one of the six or seven most common food allergies in the U.S.”  In addition to its mounting prevalence, sesame poses a particular danger due to the severity of the allergy: for some, sesame exposure can trigger potentially-fatal anaphylaxis.

A recent Citizen Petition—FDA-2014-P-2035, filed by the Center for Science in the Public Interest and a number of prominent allergists and concerned parents—outlines the need for action in this area. We support the petition’s request that the FDA require sesame to be listed specifically by name on ingredient lists of foods and be made part of inspections for cross-contact, to better protect our many constituents who suffer from such allergies.

FDA has the authority to regulate sesame in the same manner as other major allergens under FALCPA.  Under 21 U.S.C. § 343(x), the Secretary may promulgate regulations requiring disclosure of allergens other than the allergens listed in the original statute, and has already done so in the case of the coloring carmine/cochineal. This provision also gives the FDA the authority to determine the manner and extent of such disclosure.

As Congress recognized when it passed FALCPA, accurate and comprehensive allergen labeling is essential to enable allergy sufferers to avoid specific ingredients and potentially fatal reactions.  This need is especially critical for sesame, which is often listed under unfamiliar names, like “tahini” and “gingelly,” and is sometimes not identified at all as a component of “spices” or “natural flavors.”  Without required uniform labeling of the presence of sesame, consumers with sesame allergies, and the families of children with this serious allergy, have no way of knowing whether sesame is present in the foods they are eating, and cannot protect themselves or their family members from its potentially life-threatening consequences.

FALCPA was enacted to improve allergen labeling so that consumers can identify the presence of an ingredient they must avoid.  Given the severity and growing prevalence of sesame allergies, we respectfully ask the FDA to move expeditiously under its current authority to require sesame labeling and inspection of sesame cross-contact to help protect the health and safety of our constituents.

Sincerely,

Christopher S. Murphy

United States Senator

Richard Blumenthal

United States Senator

Edward J. Markey

United States Senator

____

Update: 6/26 – here are links to coverage about the above:

http://thehill.com/regulation/246026-senate-dems-urge-fda-to-make-labeling-of-sesame-products-mandatory

http://www.murphy.senate.gov/newsroom/press-releases/murphy-blumenthal-call-on-fda-to-label-and-regulate-all-sesame-products

snacksafely.com/2015/06/senate-dems-to-fda-label-sesame-as-an-allergen/

Statement From FARE Regarding Sesame Labeling

When I wrote about my experience on May 13, 2015 lobbying for sesame labeling in Washington, D.C. I was still awaiting statements from food allergy organizations in hopes that they would support the Citizen Petition of CSPI on the FDA’s docket.  The Citizen Petition is open for comments until May 25, 2015 from what I’ve heard so if you wish to register support as an individual, you can do so here: http://www.regulations.gov/#!docketDetail;D=FDA-2014-P-2035

What follows is Food Allergy Research and Education‘s statement in response to my inquiry.  My hope was for a resounding statement of support for CSPI’s November 2014 Citizen Petition but there may be interests at play that I don’t fully understand as a layperson in this arena.  It does sound like FARE might have independent plans regarding FALCPA that I will follow with keen interest.

Screen Shot of http://www.foodallergy.org/allergens/other-allergens#seed
Screen Shot of http://www.foodallergy.org/allergens/other-allergens#seed

Special thanks to Anna Luke, Manager of Online Community for FARE for going above and beyond to secure the following statement just after a busy period of time post-FARE conference in California at the end of Food Allergy Awareness Week.  Thank you, Anna!

The title below is mine, but everything after that is unedited and complete as provided to me today via e-mail:

May 22, 2015 Statement from Food Allergy Research and Education Regarding Sesame Labeling

Sesame allergy can be severe — individuals who are allergic to sesame can experience potentially life-threatening reactions such as anaphylaxis. A 2010 survey showed that hundreds of thousands of Americans are affected by sesame allergy, and several reports have shown that sesame allergy has increased significantly in the worldwide population over the past two decades.

Currently, the inclusion of sesame as a stated ingredient in processed food is not explicitly regulated by the U.S. Food Allergen Labeling and Consumer Protection Act of 2004 (FALCPA), making it difficult for those with sesame allergy to determine which products may contain this allergen.

Given the importance of education and awareness about this important health issue, FARE will be releasing new information and resources regarding sesame allergy in 2015, including a webinar dedicated to sesame allergy and a tip sheet on how to read a label to help consumers determine if a product contains sesame.

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.​

Update as of 7/1/15:  FARE has issued a statement of support on their blog: http://blog.foodallergy.org/2015/07/01/fare-supports-calls-for-addition-of-sesame-as-a-major-food-allergen/

The Court of Public Opinion

It goes without saying that we understand there are multiple sides to a given story that 140 characters or bold headlines can’t possibly encapsulate.  Hopefully we’re all discounting lead-ins and click-bait but even when you don’t read on or click through, exposure to information in brief can wedge into our minds and impact our perception.  Put another way, reading case law in a given area makes King Solomon’s child custody dilemma of old seem quaint.  Over at the Allergy Law Project, Laurel, Mary, and I have talked about speaking softly but also knowing your rights and standing firm while on this blog I’ve pontificated about issues with legalities in labeling and personal responsibility.

When I watch old movies with my mother she’ll cringe at inaccurate depictions of Germans (sorry mom, I still love Bedknobs and Broomsticks!) and I change the channel for most legal dramas (no one would really want to watch a show about what most attorneys do all day!). . .so watching the fallout from the recent #AAAAI LEAP study announcement has me empathizing with friends in scientific fields.  The furor has not left us “law talkers” (yes, a Simpson‘s reference) without reasons to want to chime in about issues like disclosure and liability.  And yet, I’ve refrained because I genuinely am out of my element except that the scientific method and peer review are things I esteem so I will keep reading about food allergy research even though I roll my eyes at proclamations about “cures.”  Still, when a friend forwards some article my way I feel appreciated because it got them thinking about food allergies or capacity or whatever is the topic at hand.

IMG_20150313_093414

Aside from feeling prone to parentheticals this beautiful spring-like Las Vegas morning, I did set out to talk a bit further about why it is important to take much of what you read with a grain of salt.  The “TL;DR” version is that there’s always more to the story.

For example, when a suit against PF Chang’s was recently filed regarding discriminatory pricing for gluten-free versus standard menu items, my knee jerk reaction was to think of how class actions tend to benefit attorneys most of all.  Trying to find the original complaint in the case was not simply a matter of using Google so once it was located the work of combing through the allegations began.  Even so, there has been discussion on the Allergy Law Project facebook page about the resulting piece covering the lawsuit about the risks of taking on a company that is actually trying to serve food allergic individuals safely.  Even I had trouble articulating why it is not okay to tell food allergic individuals to not eat somewhere if they don’t like a policy until I read Mary Vargas’ remark – “If the choice is whether to experience discrimination or not, that would seem a false choice [,] wouldn’t it?”

Debating whether or not there is something I could have done differently so that my daughter wouldn’t have food allergies is not going to get me anywhere, but railing against study approaches is equally unfruitful.  If suing a company with allegations of discrimination results in the ire of a community, what chilling effect is there on rights advocacy, or even in other fields, research, with that negativity?  I’m no Pollyanna, pessimism and worst case scenarios are the name of the game for me, but there’s a difference between being realistic and being in a constant state of attack.

Going back to Mary’s point, it is a false choice to say to a family they can keep their child home if they’re worried about safety (“just homeschool” is the refrain).  It was a false choice when I was in middle school and my parents had to leave me to be bullied by students and staff or keep me home in 7th and 8th grade.  The other remark seems to be that my child needs to “get used to” discrimination.  I’ll teach my child well enough about the cruelness of the world without someone turning basic social situations into minefields, thankyouverymuch.

I’ve written often about how lucky our family is to have the support of those that care about inclusion but sometimes it means biting your tongue.  Sometimes it means not fighting the small battle because of the larger one.  We’ve been refused service at a restaurant because of food allergies and walked away only to find a much better option to save the evening (thank you, random balloon twister at Macayo’s!). And sometimes it means calling a restaurant to task who is doing great most of the time but who makes a misstep in their approach.  Read a snippet of the argument in PF Chang’s response to the suit where they claim celiac disease isn’t a disability:

“Counsel for P.F. Chang’s has not found a single case where a court has held that celiac disease qualifies as a legal disability within the meaning of the Unruh Act, the DPA, or the ADA. There is no basis for this Court to blaze that trail here. Under any reasonable interpretation of these acts, a person cannot be considered “disabled” just because he or she cannot eat certain foods containing gluten.”

(Source: Motion to Dismiss, see page 6).  To add our grain of salt here, of course the attorneys for PF Chang’s are making the arguments they can.  I’m not faulting them for that.  But it does mean that there would be some that argue that suing them in the first place pushes them to make claim about disability.  I don’t know how the case will turn out, nothing is without nuance and there are a lot of procedural arguments in the motion that could carry the day depending on how the court views matters.  Another way to look at the corner PF Chang’s is in:  Just as the attorneys for the restaurant ignore the case by case analysis mandated by the Americans With Disability Act for disability determination by summarily stating there are no cases that hold celiac disease to be a disability – a case about a dollar surcharge may end up opening different doors than anticipated.

I had the privilege of doing some consults yesterday with seven very different individuals (thank you to my mother in law for watching the kids!) and though I know I’m a rambler by nature, fifteen minutes apiece as mandated by the Ask-A-Lawyer program was not remotely enough to get a real feel for each person’s case, let alone give them the advice I would like to.  Fifteen minutes isn’t enough, one news article isn’t enough either.  One headline.  One meme.  One piece of he-said-she-said.  It can be something that discourages us or something that emboldens us to seek deeper into issues that polarize us.  Get uncomfortable, try to see the other side(s).

I get calls from time to time, though I mainly practice elder law, from adults that have experienced anaphylaxis while eating out.  People of all ages and walks of life tell me they do not want to get anyone in trouble, that they don’t want to harm their ability to eat out in the future, that they don’t want everyone else to think they’re after money when what they really want is an apology.  A college student served a coffee drink containing milk, a man that begged staff at a hotel to call 9-1-1 while he fumbled for his epinephrine after being assured a dessert was nut free, a mom given real milk for her toddler instead of soy milk as requested. . .every one of them spoke to me of businesses that demanded to know what damages they wanted.  “I don’t want money,” one of them said, he just wanted to know his daughter won’t by left lying on the floor like he was.

So even if you read about a lawsuit about a death, or a surcharge, or what have you, consider that litigation is the arena our American system gives us to redress grievances, consider that many of the rights that are protected now are often the result of someone willing to weather the storm in the court of public opinion.  I want to leave you with the story of Jenny Hatch shared with me yesterday.  It moved me and I hope it moves you too:

Thanks for reading!

The Allergy Law Project

allergylawprojecttitle

I’m excited to share something that has been in the works since mid-2014 – the Allergy Law Project!  Countless e-mails and a number of telephone conference calls between Laurel Francoeur, Mary Vargas, and myself have brought us to the point where I can share the site with readers here.  Laurel had the idea to make a resource for folks navigating the intersection of law and allergy (celiac fits in with a lot of the framework too of course) in the United States.  Laurel is an author, attorney, and advocate and Mary is an attorney that focuses on disability rights.  We all understand one another’s schedules and are trying not to get too excited by the already positive reception the site is receiving in the community but it certainly feels like being in a study group back in law school.  Our ideas spark other ideas and before we know it we’re miles away from our initial topic of discussion.  Needless to say, I’m learning so much from them both of them as the least experienced of the trio.

Our first collaborative piece was born out of an idea I had to cover some basic terms – we’ll switch back and forth between “101” style topics and more detailed resources that may end up being useful to other attorneys like case histories and references.  The post is called “Terms of Art in Disability Law & Food Allergy” and while it may not contain new information for some, I know that there was a time when I had no idea what a 504 plan was.  There’s much more in the works, some of it in my inbox as I type this actually.

allergylawproject

Most of all, I feel incredibly privileged that my day job is something that can be one of service and even compassion.  Lawyers can have a bad reputation but law is both a sword and a shield – we can be frustrated with the system but understanding the way things are can give us tools to change them.

The resource is free (I was able to piggyback the hosting into a framework I already had and the $15 domain registration fee was really the only specific start up cost) because our time is donated which also keeps matters independent.  Below I’ve linked to the posts I’ve done here that touch on legal-type issues but you’ll see that our first post on the Project is not an advocacy piece as much as an informational one by comparison to what I post in this space.  With all of that comes the disclaimer that the Project isn’t about specifically advising anyone, it is about serving the idea of inclusion and safety.

CSPI Files Sesame Labeling Regulatory Petition

FTC Dot Com Disclosures and Food Allergy Blogging

When a School Tries to Split Up Epinephrine Auto-Injectors

Food Allergies and Travel in Recent News

Amtrak’s Unaccompanied Minor Policy Explicitly Excludes Food Allergic Youth (this post is what lead me to getting to know Mary!)

UPDATE: Suit Filed Against Amtrak re: Unaccompanied Minor Policy’s Exclusion of Food Allergic Youth

Amtrak Quietly Changes Their Unaccompanied Minor Policy

Ingredient Disclosures for Prescription Medications (or: A Worthy Cause)

A Brief in (Semi) Brief – Understanding the Amicus Brief of FARE and COPAA in T.F. vs. Fox Chapel Area School District

The Stories We Tell (or: Legalities in Labeling)

Stock Epinephrine in Schools in Nevada and Onward to Restaurants and More

“An Emerging Epidemic: Food Allergies in America” and NV SB 453

My Prepared Statement About Stock Epinephrine

As is probably apparent from my own forays, I’d love to do research on travel, labeling, and of course epinephrine access issues in addition to the obvious discrimination issues that come up.  We’ve even been discussing food allergy and prison populations behind the scenes so there’s no shortage of content.  In a way, these are things a lot of us research and take notes on, we’re just taking an extra step to make that effort into a service for others.  Thank you to Laurel for inviting me to be a part of this and letting me play webmaster/designer for the site to boot.  Which reminds me, I need to run accessibility tests on the site and get it prepared so that more people can access it (such as those that are blind).

I always say that most things I do bring me back to my webdesign roots and this is no exception.  I had fun tinkering with the logo idea as well and got invaluable feedback from my dear friend from all the way back when I was a student at Wasilla High School – Chris Swasey.  I also received early encouragement in this arena from Sharon Wong (who introduced me to Mary, actually!), Lisa Musician, Karen P., and Caroline Moassessi.

You can subscribe to the RSS feed for the site, follow on facebook or twitter, or if you comment here with topics you’d be keen on reading about I can certainly log those.  Comments on the site itself are closed.

CSPI Files Sesame Labeling Regulatory Petition

We have 8 planets and 8 top allergens – that’s about to change!  Well, we’re hoping it will change and a fantastic organization called CSPI (the Center for Science in the Public Interest – a Washington, DC based non-profit health advocacy group) has taken a major lead in doing so.  No, Pluto isn’t coming back (at the moment) but CSPI and many other folks would love to see sesame added to FDA labeling requirements for allergens.

Food Label Example from
Food label example from a prior blog post

I’ve discussed labeling legalities on my blog in the past as well as specific examples of labeling woes, but to those that don’t live with a sesame allergy this may not seem like the exciting step it really is.  If we open the door to the “top 8” notion expanding, what else are we capable of changing?  

Background

My dear friend Jessica Almy is not only the founder and editor at Vegbooks.org, a site focusing on kid movies and literature reviews with a compassionate (vegan and vegetarian) lens,  she is Senior Nutrition Policy Counsel with CSPI.  Jessica is one of those people I say I want to be like when I grow up, she has even changed the way I think about food and I thought I was pretty entrenched after 6 years of being a food allergy mama.  Two of the campaigns she has worked on look at the use of icons that appeal to children to sell junk foods/candy (ex: Hello Kitty on just about everything, How to Train Your Dragon with candy “advergames”).  These are pressing issues – just yesterday my husband e-mailed me this article from the New York Times about the ubiquity of Disney’s Frozen to sell products to children.

In January 2013 Jessica connected me with Janna dePorter, a research associate at CSPI, about CSPI’s work on a petition for the FDA to get sesame labeling going.  I was able to reach out to my own networks so that Janna could speak with other great individuals that wrangle sesame allergies in their life.

cspi

The Petition

I’m used to keeping mum on things but here we are in November and I get to finally share that yesterday CSPI’s petition went up!  Read the press release here, and download the pdf of the actual petition here.

From the petition (internal citations omitted):

The sesame seed (Sesamum indicum) is an oilseed crop and edible seed that is used in many food and consumer products.  It is used in an increasing number of foods and might be listed in the ingredient list under an unfamiliar name, such as benne, benne seed, benniseed, gingelly, gingelly oil, gingelly seeds, gomasio, halvah, seed paste, seed oil, sesamol, sesamolina, sesamum indicum, sim sim, tahini, and teel or til.

This is part of the background research that Janna and others were involved with when they reached out to food allergy families – where and how does sesame, one of the top 10 allergens labeled for in Canada already, hide and endanger an at-risk population?  Sesame also hides under terms like “spices” or “natural flavorings” in food.

My statement in support of the petition is featured on page 13 as pictured below, I’ll also paste it in for easier reading but it gives a better idea of why I think this is such an important step:

Wordy as usual!
Wordy as usual!

September 21, 2014
H. W.
Las Vegas, Nevada
My daughter was diagnosed with multiple food allergies shortly after turning 1. She’d had reactions before the confirmation of her condition but it took time to isolate her triggers. She was initially allergic to peanut, tree nut, oat, sesame, corn, milk, egg, wheat, soy, and grape. This made cooking and shopping a challenge and it still is a challenge even though she did narrow her list after outgrowing a few allergies to peanut, tree nut, oat, and sesame. Having a “mainstream” allergy mixed with a “non-top-8” allergy makes a life of constant vigilance that much more challenging. You could say “just avoid the allergens” but when companies don’t have to disclose the presence of sesame or use the commonly understood name of sesame, things get tricky. 5+ years into our allergy journey I know how to pick up a product and hunt for the clues that tell me about the presence of something like sesame but even my food allergy mama sleuthing skills can’t see into the mind of a manufacturer that just lists “spices” as an ingredient. “Tahini,” or ground sesame paste, is another nebulous ingredient that I try to work on with my budding reader but which inhibits the ability of others to assist in keeping her safe. Which is to say that I may know that tahini equals sesame but a teacher or other parent may not know that. It really boils down to disclosure for our family – sesame is a fairly major allergen not being labeled for. No one is asking companies to stop using sesame in their products, just to let the consumer know that it is there. The precedent set by adding to labeling requirements will open the door for more transparency and safety for consumers in the United States. How do I teach my child to be responsible about her allergies if companies that make food products aren’t required to tell her the ingredients of their “spices” or that tahini lurks within. I distinctly remember buying tomato sauce and seeing that one variety had sesame. I was shocked and wondered if the absence of sesame on the other brands’ labels meant it was present and they didn’t feel obligated to tell anyone. The broader issue is not whether I’m going to walk out of the store with tomato sauce, it is that if we’re consenting to have food production so removed from the end user, we should be heard when we ask for assistance knowing whether we can safely provide a food product to our families.

What can you do?

Be sure to share the press release with others to raise awareness of non top 8 allergens.  You can even share your own story of dealing with sesame or another allergen that isn’t mandated for labeling.  More disclosure benefits all of us and may put companies on notice that they should take a step further than what is legally mandated already by FALCPA.

My daughter is reading labels as her reading skills improve, it is exciting and scary for me at the same time because she believes the things she reads (this goes back to the other work CSPI does about children and marketing) and relies on them.  She does know that the next step is calling the company or emailing them to find out about other allergens and manufacturing practices and that will still be our norm, but maybe things can change.

Keep sharing also your own stories about living with food allergies with people in your community.  Just as there are “teaching moments” when you spend time with a child, there are teachable moments in everyday conversation with others.  We may each only be one person but you never know how far a message can spread!

___

Edited to add: Here’s a link to Brian Heller’s Change.org petition CSPI’s filing references, if you’d like to show support that way!

A Brief in (Semi) Brief – Understanding the Amicus Brief of FARE and COPAA in T.F. vs. Fox Chapel Area School District

I was excited to see that FARE (Food Allergy Research and Education) posted their Amicus Brief recently filed in TF and DF and TSF v. Fox Chapel Area School District for download on their blog.  Speaking with other allergy advocates, many had seen the brief go up but had not had time to read through.  I found it to be a great overview of food allergy accommodations in federally funded schools and had the idea to try to distill the brief into a post in honor of Food Allergy Awareness Week (starting tomorrow, May 11, 2014) here in the United States.  I tried to also cover some questions people may have, like what an Amicus Brief is, and why there are citations to cases as well as parts of the US Code in the brief.

Remember that briefs and settlements are not binding precedent (I see some people cite the Lesley University settlement as binding in other cases) and analysis of food allergies as a disability are a very individualized thing even if we can all agree that food allergies are a disability.  For example, in a private daycare, you could use the Americans With Disabilities Act to seek accommodations for your child but the factors and balancing at play could very well leave you having to look elsewhere for services.  With federal money involved, however, your chances get significantly better.

Generic policy does not meet the requirements for a free, appropriate public education under the law. The major theme is individualized planning, from inputs to process, to outcome. As an aside, for most lawyers there are three answers to any question: Yes, No, and It Depends – individualized case by case planning falls in the third category. As a parent of a child with multiple food allergies and also one aware of the co-existence of other issues unique to each child, I think the brief is a great resource.

Amicus Brief re: TF and DF and TSF v. Fox Chapel Area School District (download the original brief here)

From the caption we can tell the case was initiated by a minor and his parents against a school district. It is on appeal by the parents & child so we can guess that there was an unfavorable aspect of the decision below.  From the FARE Blog:

A federal judge previously ruled that the school district did not discriminate against the child in violation of Section 504 of the Rehabilitation Act, and that the school offered reasonable accommodations, and had not retaliated against the student’s parents when it filed a truancy petition after the parents withdrew their child from school. Among the accommodations that the school offered was special lunch seating at a nut-free table that was actually a single desk in the cafeteria. 

Amici Curiae

An “Amicus Brief” is one filed in a case not by anyone that is a party to the dispute but usually by organizations that have a vested interest in the outcome of the case. They can highlight unique impacts on their organization depending on the outcome of the case or just show support. Here, we have FARE (Food Allergy Research and Education) joining with the Council of Parent Attorneys and Advocates to support TF, DF, and TSF.

Table of Contents and Other Introductory Material

If you’ve had experience with your local court system, you may notice the greater formality in a federal brief. Ideally, we should all be well organized in our writing (headings, etc.) but you simply don’t always have time to draft the perfect document in regular motion practice. In other words, don’t hold your divorce attorney to the standard you see when you’re reading a brief like this.

Relevant Statutes and Regulations

They start off with 29 USC (s) 794. This citation tells you the title of the United States Code and the section where the provision quoted is located. The ellipses let you know portions that were perhaps not relevant have been removed. This provision of the US Code states that if you otherwise qualify (so subject to any exceptions that may apply from other laws), if you have a disability in the US, you can’t only because of your disability be excluded from, denied benefits of, or be discriminated against by/through a program or activity that receives federal financial assistance. It goes on to define what a program or activity would be, including educational agencies or a school system. Note that it specifically says in this provision that they have to receive Federal financial assistance. If you’re looking at this brief to apply broadly then you’re out of luck because a private school system would require you to find a different provision, if one exists, to apply to your circumstances.

Many times, the key here is knowing how the court gets jurisdiction on an issue, that is, how do they have the “right to speak” on the topic and bind the parties that come before them. For things to hit Federal Court, one great way is for an issue to be one of Federal Law.

Next up is 34 CFR (s) 104.33. We see that under Title 34 of the Code of Federal Regulations, Section 104.33 we can find the provision cited. Title 34 of the CFR is titled “Education” so that would also clue you in that you could look under that title for related subjects.

When laws are passed, they often set into motion a framework to make rules to apply those laws. So these are rules that are also binding under the law. This particular portion of the CFR states that a recipient of federal assistance operating an education program has to provide “free appropriate public education to each qualified handicapped person” in their area, “regardless of the nature or severity of the person’s handicap.” So we see from this that a school getting federal money can’t turn away a student even if they are handicapped and the accommodation for that handicap may be great. This is different than the American’s With Disabilities Act provision that a private entity that is classed as a “public accommodation,” such as a daycare, won’t have to accommodate a disabled individual if, among other things, it would be unduly burdensome or change the nature of the service they offer. Here, if you’ve got a school that is getting federal assistance they have to take a student on and figure out how to make it work so that their education is still free to the family and appropriate.

A subsection goes on to point out that “appropriate education” is defined to include any special services and aids to meet the person’s needs “as adequately as…” the needs of people non-handicapped person. There are more provisions about how to determine the placement procedures for a handicapped individual.

Title 34 of the Code of Federal Regulations, section 104.36 is an additional rule that provides for procedural safeguards, notice, opportunity for parents to examine records, a review procedure, and an impartial hearing with participation of the child’s parents.

Statements of Interest

This section details the resume of FARE and their focus on research and allergy education and is interested in the case because of a belief that “students with the disability of a severe food allergy have the right to individualized plans that ensures their access to education and safety while in schools.”

The Council of Parent Attorneys and Advocates is described as a nonprofit organization for parents of children with disability and those that advocate for them. They assist counsel for families on disability law.

Argument

The Importance of Protecting Students with the Hidden Disability of a Severe Food Allergy

Pretty much general statistics here, ones advocates are all too familiar with. Some that were new to me:
– Over 160 foods can cause severe food allergy reactions
– The Food Allergen Labeling and Consumer Protection Act also requires federal agencies like the CDC to monitor and research “the growing prevalence of food allergy.”
– Peanuts and Tree Nuts account for 50-62% of reactions and 15-30% of the fatal/near fatal reactions in emergency rooms.

Schools are Required to Develop Individualized (s) 504 Plans to Ensure a FAPE for Students with Disabilities

Before section 504 of the Rehabilitation Act of 1973, discrimination regarding disability was viewed by Congress as careless, not intentional. Now, under a section 504 claim, a student has to prove:

“(1) he is ‘disabled’ under the meaning of this Act;
(2) he is ‘otherwise qualified’ to participate in school activities;
(3) the school or the board of education receives federal financial assistance; and
(4) he was excluded from participation in, denied the benefits of, or subject to discrimination at, the school.”

Ridgewood Bd. Of Educ. v. N.E. ex rel., 172 F.3d 238, 253 (3rd Cir. 1999).

FAPE, or “free appropriate public education” (and individualized needs) to students with a disability so that they can participate in education. The protections of section 504 are procedural and include extracurricular activities as well with a mind to meaningfulness for the student with a disability.

The two procedural safeguards are that a person that is “knowledgeable about the child” to be part of the group evaluating their placement and that guardians have notice and opportunity to see the records informing decisions about placement.

An IEP may be needed, or a 504 plan, depending on the circumstances and even if other provisions are in place for the student.

The Court Should Require Schools to Develop Individualized 504 Plans for Students With the Hidden Disability of a Severe Food Allergy

A school can’t simply decide on a policy for all students with food allergy, they have to adjust to each unique circumstance with parental and expert involvement.

In 2011 the Food Allergy & Anaphylaxis Management Act (FAAMA) was passed by Congress to require national guidelines to assist implementation of plans for individuals to manage food allergy and anaphylaxis risks in schools. The individualized mandate appears again and again.

The brief is requesting that the court rule that 504 and IEP plans be individualized based on the regulations, case law, and United States Code. Schools can’t bypass families and administer a generalized policy if the court rules that individualization is the “minimal bright line rule.”

Components would include individualized accommodation for meaningful participation at school as well as an emergency care plan specific to the student. The factors requested for consideration are (1) medical history, (2) type and severity of allergy, (3) number of allergies, (4) atopic conditions, (5) mental health, age, and maturity, (6) any developmental or learning disabilities, (7) past bullying and harassment, (8) school nurse presence or absence, and (9) transportation needs.

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Special thanks to Laurel Francoeur and Kim Pebley for the encouragement to drive this post forward.  I hope it is of use.  Special thanks also to my daughter’s teacher and her school, she is wrapping up her kindergarten year in the next month and we are truly lucky for the support and compassion of the staff, students, and other families when it comes to keeping her safe.

Also, check out our latest post over at FABlogCon.com, our Mother’s Day gift/Food Allergy Awareness Week contribution of a video session from last year’s conference entitled “Facing Adversity With a Smile.”  I make a teary appearance but to those that know me that isn’t a surprise.  I can argue cases just fine but when it comes to food allergies I get very emotional!   

The Stories We Tell (or: Legalities in Labeling)

In what is not an uncommon experience for food allergy gumshoes (I was going to say Food Allergy sleuths, but that is the title of my friend Jessica’s fantastic blog and I don’t want to encroach on her territory!), I was told just last month that if I had any questions about the safety of a food item, I should just not purchase it.  Last year the version from a restaurant was “we don’t know what is in our food, you shouldn’t risk it.”  To hear from a seller of shaved ice that I could not see the labels for his syrups and that I should not purchase anything was puzzling because water and sugary syrup is not a bad market for sweet sellers.  You’d think they’d want to include more people.

But I don’t mind being told that someone doesn’t want my custom, it is just that the blame often lies with over lawyering.  It also comes up when discussion gets to stock epinephrine (access and administration).  Now, that gets under my skin a little bit.  Seems to me I need to clear the air on this one for myself and my sister/brother attorneys, as I promise that the knee jerk reaction people have (to think lawyers are stirring the pot or being polemic) is not entirely true.  I believe that litigation and the adversary system can hone and focus practical issues in an ever changing world of challenges to health, happiness, and safety.

In law school I took a products liability course and if you ever want to fear just about every activity or item known to modern man, it is a great class to take.  (The professor was the fantastic Pavel Wonsowicz (now at UCLA) and I mention that because he was brilliant and hilarious.)  At any rate, there is a lot of misinformation when it comes to public perception of tort (a civil wrong as opposed to a criminal one) law as I learned even at that stage in school because I know all too well some of the stereotypical cases used to imply that we are a litigious country.

I’ll mention, for example, the “McDonald’s coffee case” (Liebeck v. McDonald’s).  In short, the public heard in snippets about the perception that a woman received a big payday because she spilled coffee on herself after obtaining it at a fast food drive-thru.  The disturbing untold element is that the Plaintiff’s case looked at what the company knew about how hot they intentionally made their coffee and the foreseeability of harm to customers or that they arguably ignored warnings in the form of hundreds of prior complaints about scalding coffee.  Does, for example, their claimed desire to have coffee stay hotter longer as drive-thru customers make their way to their destination tip the scales when compared with the increased risk of third degree burns like those suffered by the octogenarian Ms. Liebeck?

When you start breaking down your assumptions about motivation and responsibility, you start to understand the struggle between the letter of the law and the spirit.  We can know instinctively that people should be careful with a cup of hot coffee but as a society where does defaulting to personal responsibility end?  Can/should corporate entities be allowed to enjoy protection from liability, profit from consumers, and then not be responsible themselves for the strategic decisions made in product delivery and development?

Swinging back to the food disclosure issue, if a customer with food allergies were to eat at a restaurant without informing the staff of their disease and experienced a reaction, generally we could say that a reasonable restaurateur would not anticipate that their patron could have a reaction.  Even so, could we argue in the face of the epidemic of food allergies that a restaurant should be on notice in a general sense and therefore make affirmative disclosures about the contents of their food?  And while I’m asking questions, what would be so bad about disclosure of ingredients to shift the burden of deciding whether to consume an item onto the consumer?  Refusing service is not the only way to protect against liability, after all.  In the labeling context, the manufacturer that labels with a default “may contain milk” warning, for example, is refusing to serve the milk allergic customers in the same way the restaurant that tells me I should not risk purchasing their food for my child.

The decision to exclude in this case is most likely an economic one.  A great read is Jonathan B. Roses’ 2011 Food and Drug Law Journal article entitled “Food Allergen Law and the Food Allergen Labeling and Consumer Protection Act of 2004: Falling Short of True Protection for Allergy Sufferers.” (You can download the full pdf here.)  Roses writes:

Because of the expense of analysis required to determine if trace amounts of allergens are present in foods, or the risk of contamination in a food production or processing facility, manufacturers have a substantial cost-savings incentive to simply place precautionary warnings on all their products, ensuring protection against potential allergy litigation.

Volume 66 No. 2, pg 229.

Oddly enough, the manufacturer or food service entity may be concerned with monetary risks but I submit that it might be even cheaper to engage in safe food handling and appropriate disclosure because the benefits would reach beyond just avoiding being sued by someone secondary to an allergic event.  A little prevention and mindful safety could prevent food poisoning, even.

For all the fear of litigation, Roses’ article indicates that only 6 cases from 1992 to 2000 regarding anaphylactic reactions.  Id. at 232.  This could be because of extensive settlement and the fact that the case law that is out there can be contradictory.  If a person has a rare allergy, it might not be foreseeable that the allergen would require disclosure but if the person has a common allergy, courts have found that the allergic individual should foresee that a given food item contained that allergen.  Id. at 234.  Take a minute to digest (unintentional pun!) that contradiction and you’ll see the way we chip away at concepts to create law.  A new case occurs and we look to the prior ones to see what precedent was set.  Often the case law is such a mess than there has to be legislative intervention to change the way things work faster than would be the case through the progression of court cases when they frequently end in settlement anyway.

I have been working on this post, turning over my approach in my mind over and over only to not have a satisfactory way to distill my unease into clear terms.  Brevity has never been my strong point but the benefit of a blog as a writing space is that I don’t have to write something comprehensive, I can mull and ponder and post at my own pace.  Tort litigation is not the only thing on my to do list as it intersects with food allergy, but much like the famed McDonald’s case, it is my hope that if you encounter the argument that a policy is the product of “frivolous” litigation, there is more than meets the eye.  Much like the incomplete food allergy label there’s a bigger story lurking in the wings.

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Disclaimer: I’m a Nevada licensed attorney and solo-practitioner but this is in no way legal advice or intended to create an attorney client relationship.  The State Bar of Nevada does not certify any attorney as an expert.