Trust and Food Allergies

The candles are off the cake, slices served to eager children.  A little girl has her fork by her mouth, a small bite of cake hovering and awaiting a response.  She was dropped off to the party, so there’s no one in particular for her to ask, so her tentative voice asks no one in particular. . .

“Does this have tree nuts?”

I ask her if she’s allergic, she says she is.  I ask her if she has her EpiPen and she pauses and then reveals she does not.  She really wants the cake.  She seems to regret asking the question.

I can’t get it out of my mind, what would I want another mom to tell my child?  How can I frame this in a way that doesn’t come off as judgmental because I am not in that other family’s shoes and I don’t know what advice they follow to manage allergies?  As I contemplate the situation a few things converge – food allergy awareness week, whether I’m quick to discount lay advice online, and community generated parenting advice.

First, we’re almost upon “Food Allergy Awareness Week” – I will actually be away from my own family for a few days to present at a conference in Orlando as a one-third representative of the Allergy Law Project (“ALP”).  I was invited because of ALP and will be reimbursed for my air travel and will have a room provided (see, there’s my disclosures at work). That has me contemplating audience – who are we trying to reach in an awareness context – could it be diagnosed individuals as much as people who may not know about allergies except for seasonal ones?

Second, a friend has made some very cogent points about a concept floated in an ALP post where we discussed non-lawyers dispensing legal advice.  She cautioned me that in law, medicine, and the like, we can’t discount the power of community information shared by informed individuals who have lived a given scenario.

Third, I’ve been reading the book “Parent Hacks” by Asha Dornfest – I pre-ordered a copy of my own but also received a review copy and Asha’s site and book have elements of empowerment and community based information that had me thinking about the tips, recipes, and more that food allergy parents share on social media and elsewhere.  (I reviewed the book on Amazon, so you can see my specific thoughts there via this affiliate link.)

Does anyone recall the part in Donald in Mathamagic Land where Donald Duck is advised to tidy his mind?  I’ve viewed my mind that way often – jumping to and fro – so blogging is often a way to achieve some organization.

Source: The Encyclopedia of Disney Animated Shorts
Source: The Encyclopedia of Disney Animated Shorts

Unrelated aside, well, aside, these things connect for me but they probably appear hodge podge to anyone else.  I promise I’m going somewhere with this.

A few things I know, in relation to the thoughts above:

  1. Communities have power, especially through the internet, to share useful and even life saving information.
  2. There are awareness battles to fight within a community as well as without.
  3. Bringing together 1 & 2 is a matter of safe spaces, supporting one another, and cogent discourse.

When there was nowhere else for me to go, there were blogs and other forms of social media.  Perhaps my law license gives me a little more ability to dig deeper into what I read, but I absolutely am sure the first place I heard about 504 plans was on a food allergy mom blog.  The first book about food allergy I read was Robyn O’Brien’s The Unhealthy Truth from our local library.  Who am I to discount parent based medium when it helped me so directly?  Well, there’s a balance, much like when I rambled on about FTC dot com disclosures.  Common sense comes into play with any information you read about online, in the news, or elsewhere – but the scaffolding we each build upon is different.

I was at a self help center “ask a lawyer” meeting and the prospective client had some bad experiences with attorneys.  She wanted my advice as an attorney but not representation by anyone because of her bad experiences.  I can’t fault her.  The same would go for a person who had a bad experience with an allergist or professional who was not an adequate shepherd of their trust.  Which all goes to say that I don’t fault people for looking elsewhere when they may have reason to believe they aren’t getting the truth from a segment of professionals.  But we can’t move from one extreme to another.  I wouldn’t presume to say a food was “safe” for another child, I can only know what works for our family – and yet you’ll find people posting online “we have x, y, and z allergies – is food abc okay?” and relying on the responses.  Is the asker or the answerer more at fault in that scenario (if any fault were to be placed)?

We have a responsibility to share accurate information about food allergies because we live it every day, but with the appropriate caveats we can share as well as protect one another.  For example, let someone know the limits of advice (“this worked for us, your mileage may vary” versus “this is how it is done”).  Community message boards, forums, and even facebook can all be very effective awareness and advocacy tools but we should disclaim and warn wherever appropriate.  I do see this form of appropriate disclosure quite a bit, but there are some situations where people become defensive and hostile if asked to clarify their experience or acknowledge the limits of their advice.

This leads me to thinking of my presentations next week at the FARE Food Allergy Conference in Orlando.  Mary and Laurel both have conflicts and can’t attend so it was up to me to carry the Allergy Law Project banner, so to speak, and take this great chance to reach others within our allergy community to share our resources and mission.  I know, however, that these are well informed individuals at different stages in their out advocacy journey and I would not presume to imply that their personal experiences are diminished in the face of the letter of the law.  On the flip side, I do think I want to address how to recognize when one is maybe out of their depth and needs more resources.

Just as physicians bemoan the snake oil salesmen of the world, lawyers do get frustrated at the harm that can be done when someone gets bad advice.  That said, bad advice can come from lawyers just as it comes from lay people, but professionally there are remedies for people harmed by bad advice from a lawyer.  You have reason to believe a higher expertise is at play, after all.  The next layer of complication though comes from giving a presentation as a lawyer, or writing an article, and the recipient changing the message or making it their own.  If I talk about 504 plans or rights under the ADA, I do want people to feel empowered to advocate for themselves.  I really do.  But I wouldn’t ideally want them to claim some authority if they share that information with another person.

Back to the little girl at the party, a lot of this comes down to trust.  Who we trust and how.  Whether trust is enough – we can trust that we won’t get in an accident or we can also wear a seatbelt.  We can trust that a label is accurate or we can also carry epinephrine.  We can trust that a school administrator is on the side of our child’s safety or we can advocate for a 504 to supplement what are hopefully already sound school policies.  What we should avoid is implying that something is a safeguard when it is just a shared experience -the audience doesn’t always have the ability to tell the difference so it is up to the speaker to relay that to the listener proactively.  That is simply being a responsible person.

At the outset of any business relationship, I tell clients, there’s a point where everything is going to be great – you and your business partner get along great, you trust each other, it is simply going to be awesome.  And then down the line people change and circumstances change.  At that point there’s an appreciation for the operating agreement that seemed so specific and pessimistic.  If you’re the one to point out to a fellow allergy parent, for example, that maybe they shouldn’t send their kid to a birthday alone and without epinephrine, you have a situation ripe for conflict.  Allergy Awareness Week is a time and a chance to share information and perhaps reach people within the community who have received poor advice or who are relying on sources who are not responsible about the effect of the information they provide.  People should absolutely have access to resources to represent themselves, they just shouldn’t be effectively representing someone else outside of their own sphere.

While I’m in Orlando, by happenstance, Asha from Parent Hacks will be stopping on her book tour and I really hope I can make time to go meet her because her community based website has been such an inspiration to me as a blogger.  She always keeps her own voice, even if something is sponsored, because she discloses whenever a concern could be raised and is not afraid to spark discussion.  I remember when she wrote about the pressure parents can feel about Valentine’s Day.  She suggested that we remember what our children feel about what may simply be a Hallmark holiday.  But she made no apologies for not being a fan of the day when her kids were small.  She didn’t claim that her approach was better or worse, she just offered her personal insight.  That is the power of blogging and community based information.  Putting something out into the world without judgment but so that someone else maybe sees their own struggle put into another’s words.

I hadn’t really looked through the Parent Hacks book when my ordered copy arrived because because I’d been in the middle of some health issues at the time and everything about life and the universe pretty much managed to put me in tears.  And then I saw this…

To Caron Arnold, Sara Carlstead Brumfield, Kara Hagen, Tracy Hengst, Adrienne Jones, Jim Jones, Elana Kehoe, Stu Mark, Rob Monroe, Duane Morin, Heather Petit, Jill Pohl, Kendra Riemermann, Marjorie Wheeler, Homa Woodrum, and the readers of ParentHacks.com. This book and my gratitude are yours. We made this together.
“To Caron Arnold, Sara Carlstead Brumfield, Kara Hagen, Tracy Hengst, Adrienne Jones, Jim Jones, Elana Kehoe, Stu Mark, Rob Monroe, Duane Morin, Heather Petit, Jill Pohl, Kendra Riemermann, Marjorie Wheeler, Homa Woodrum, and the readers of ParentHacks.com. This book and my gratitude are yours. We made this together.”

And I teared up anyway.  There’s something amazing about feeling like you are friends with someone you’ve never met in person and then somehow having your life weave into theirs in something so concrete as a book you can hold in your hands.  A book that is about bringing a parenting community together with tips, tricks, and “hacks” to make taking care of kids a little easier.

There’s this larger parent community with islands of compassion and support like ParentHacks.com and I think there are those islands similarly in the food allergy world in the form of in person support groups, conferences, meetings, KFA, FARE, social media groups, and more.  The tone we set is important and the information we give is as well.

Like Asha, my gratitude is this community’s.  I can’t wait to meet some of you next week and share my hopes for continued legal safeguards, labeling, and the strong food allergy community at large.  Hopefully I’ll figure out what to do about the little girl from the party in the process – I need advice on that front for certain.  Thank you to FARE for this upcoming opportunity and for embracing the independence that is at the heart of the Allergy Law Project‘s mission.

Dreamy Desserts: Las Vegas Storefront Kickstarter Campaign

Dreamy Desserts was founded by Penny Redlin and has been doing awesome custom orders for a number of years so when I found out she was launching a Kickstarter campaign to open a storefront I was so excited!  Here’s the cake she made for my son’s birthday last year – it was free of my daughter’s allergens as well as vegan!

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My reasons for why this is an awesome idea:

  1. Las Vegas is an International City – visitors come from all over and many of them deal with food allergies.  How cool would it be for them to stop by an allergy friendly bakery?
  2. Allergy Friendly on the Fly – Friends ask me all the time where they can get safe treats for my kids.  Sometimes a gathering comes up last minute and you can’t plan ahead, being able to grab some fresh cookies or beautiful cupcakes would be great!
  3. Dreamy Desserts is already part of the allergy community – Penny’s son cannot have peanuts or tree nuts so she knows what we go through.
  4. Dreamy Desserts is ready to grow – this is not an idea that came out of thin air, Penny has been successfully operating an online bakery and she is already a seasoned businesswoman with the frameworks in place to hit the ground running.
  5. You’ll brighten someone’s day – the campaign just started, put a smile on Penny’s face with even a small pledge!

Penny has made several things for my kiddos’ birthdays, look at these vegan, nut, oat, and sesame free cupcake push pops!  They tasted lovely and made every guest feel included.

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Click here to check out her campaign and support it – just 24 days to go!

 

Food Allergy Labeling Woes

I never used to be a label reader until food allergies.  Now I find myself reading labels even when I’m not with my daughter.  As dependent as I’ve become on labels, there are situations where we have to accept what we’re told about a food or go without any indication of ingredients at all.

There’s a sliding scale of comfort – if I can talk to a chef or baker I can feel out their level of awareness of food safety.  I recall talking to  Chef Keith Norman at the South Point and learning once that someone with celiac disease can’t even assume shredded cheese is gluten free because flour can be used to make pre-shredded cheese not stick together.  They’re cautioned to ask for freshly grated cheese.  Or someone with a dairy allergy can’t just order hummus because maybe food service has added milk powder.  Still, these details can be teased out the closer you get in the hierarchy to the person who actually made the food in question.

I’ve been trying to put together a draft of a piece about a fairly recent food allergy case involving the grocery store Publix.  I have the pleadings printed out and on my desk and keep reading and re-reading them.  The ultimate goal was to discuss the case on the Allergy Law Project but the time doesn’t feel quite right as the case is still playing out.

It is incredibly difficult to even write out the facts of what happened in the case because when an allergic individual or their family demands better treatment and uses the law for assistance, invariably there are those who would pick the facts and pass judgment.  I’ve written before about the dangers in doing so. Further, it is simply heartbreaking to consider the loss of a loved one, let alone to anaphylaxis.  That said, I’ll try because I think this highlights the complexity of the road ahead for labeling.

Derek Landon Wood died after eating an unlabeled cookie at a Publix grocery store after being assured that it did not contain nuts.  In the family’s complaint filed in the Middle District of Tennessee Nashville Division, they do not simply ask for compensation for the negligence alleged against Publix, they seek “to raise awareness of potential fatal food allergies in American children.”  (See the Complaint at pg. 1).

Derek, along with his mother and aunt, was at a Publix Store in Clarksville, Tennessee when his aunt purchased a cookie for him at the bakery counter on June 3, 2014.  He requested the Chocolate Chew cookie and, given his diagnosis of a tree nut allergy 7 years prior, his aunt inquired of the store clerk whether or not the cookie of Derek’s choice had tree nuts.  Assured that it did not contain tree nuts, she purchased the cookie.  Breaking off a piece and eating it, she saw there were no nuts and gave the cookie to Derek but shortly thereafter he experienced anaphylaxis and ultimately (and tragically) died.

Derek was 11 years old.

A suit in Tennessee Federal court ultimately ensued, brought by Derek’s legal guardian (his grandfather) as well as his aunt and mother.  Publix attempted to have claims brought dismissed by stating that the case was one meant to attack the unlabeled nature of bakery counter products while Derek’s family had alleged that the misrepresentation of the clerk was what they had to rely on for lack of ingredient information.

Disturbingly, the case implies that though Publix creates the illusion that products are baked on site, products like the cookie Derek consumed are not baked on site.  It bears repeating, though the sales clerk purported to know about ingredients in the cookie based on the implication that they were backed in that area, “no Publix bakery products offered for retail sale are made fresh or prepared in the store locations where they are offered for sale.”  Id. at 3.  Even the batter used to prepare the few items that are made to order is mixed at a bakery plant. Id. at 3-4.

What does this mean?  When Publix takes a product that may be sold elsewhere in the store and places it in the bakery display, they are removing any ingredient information and simply placing the item in an unmarked bag when selected by a customer.  Id. at 4.

Derek’s mother carried epinephrine but despite best efforts of his mother and medical professionals, 11 year old Derek was pronounced dead at 10:19 p.m., about 4 hours after he and his family had entered the Publix store in Clarksville.

The suit alleged negligent training of the employee that assured the family that there were no tree nuts present, failure to warn consumers of allergens, violation of the Tennesse consumer protection act, as well as strict liability claims and a breach of implied warranty of fitness.  The suit also sought declaratory relief under FALCPA.

It is still ongoing but the encouraging thing for advocates has been that the judge in the case could see something concerning about taking a labeled good and removing it from its immediate packaging to effectively package it under the guise of an on-site bakery.

Going back to the way we tend to trust communication the closer we get to a perceived source such as a chef or baker, it is one thing to have an unlabeled good.  Most people would pass on that.  It is another thing to remove labeling information and substitute it with verbal assurances.

 

Yesterday I came across a cookie that had me snapping a photo because instead of an actual ingredient list they just had a “may contain” statement.

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The label reads: “May contain the following: flour, sugar, brown sugar, margarine, butter, oatmeal, eggs, cream, chocolate chips, raisins, craisins, eggs [sic], vanilla chips, peanut butter, peanuts, almonds, walnuts, pecans, coconut, cocoa, baking powder, baking soda, salt, vanilla, and various extracts.”

First of all, the kind part of me sees this as interesting because they’ve gone to the trouble of letting us know everything they use in their kitchen.  This is just a small local bakery and they don’t have the FALCPA requirements at play.  I also chuckled at the fact that eggs made an appearance twice.  The skeptic (aka lawyer) in me wonders if this is not a label but a disclaimer.  A label tells us something about the product, a disclaimer tries to make it our fault if we eat it anyway and come to harm.

The cookie looked like a sugar cookie with frosting, sprinkles, and a candied cherry of some sort.  I showed a photo to my daughter (aged 7) and asked her what she thought it was made of.  She said “I think it is flour, sprinkles, sugar, jam, and water.”

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I read the label to her and she looked concerned.  “May contain?” she asked, her brow furrowed, “Not good.”  She went on to say it wasn’t good because “it has all the allergies.”

Even in commercially labeled products “may contain” statements aren’t regulated or mandated but this cookie made me think of Derek.  How delicious the cookie must have looked, how his family asked questions and even checked the cookie.  How they might have turned away from the counter if the employee had said “I don’t know what is in our cookies, we don’t make them.”

Allergy advocates talk a lot about epinephrine, I know I have spent my fair share of time doing that, but reactions are what we want to avoid in the first place.  Sometimes epinephrine fails.  Sometimes epinephrine isn’t given in time.  Sometimes epinephrine isn’t nearby.

Allergen avoidance isn’t a perfect strategy, true, but I find communication one half of so much in the allergy world.  Working with a school to keep your child safe, the label on a food, the assurances of a waitress at a restaurant. . . .  The other half is a disparity of power.  The look of an enticing treat, the pressure of a social situation, the clout of organizations trying to downplay the allergic storm, and even the cost of epinephrine.

Where does all of this leave us in the day to day?  Sometimes I think things are getting better but perhaps I’m just brushing off the things I’m used to – like all the food fundraisers at school (I can’t fathom how cookie dough sales are more helpful than buying some paper and pencils for the classroom directly, for example, or how being invited to buy McDonald’s products served by teachers is as useful as volunteering in the classroom).  I’m laughing at labels like the one I featured above as a coping mechanism because it just is a signal of a greater disregard for the complex relationship between people and food.

There’s so much more to food than nourishment.  It can comfort, welcome, and include.  It can also be a part of anxiety, dysfunction,  and exclusion.  We can’t rely on those who have the upper hand, be it drug or food companies, to “do the right thing.”  We can’t prepare for all contingencies but we can work together and not judge one another in our own personal battles.  We can speak softly.  We can push for labeling of one allergen while knowing there are many more in need of disclosure.

Most of all, we can try to be compassionate and inclusive of others outside our allergy sphere.  As usual, I don’t have answers.  I can share how I frame the question to unpack ways to help any way I can.  The irony of fighting for labeling of allergens while not wanting people to label my child simply as food allergic is not lost on me.  However, the example of consideration and kindness we show will shape the next generation and the balance of the bargains they must make.

10/28/15 – All Auvi-Q Epinephrine Autoinjectors Recalled

Today Sanofi US announced a large scale recall of their .15 and .3 mg epinephrine autoinjectors.  A few folks subscribe to this blog because of the pricing and expiration date updates I’ve provided about autoinjectors so I wanted to link to their announcement right away: http://www.news.sanofi.us/2015-10-28-Sanofi-US-Issues-Voluntary-Nationwide-Recall-of-Auvi-Q-Due-to-Potential-Inaccurate-Dosage-Delivery

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I’m disturbed that I learned about this via twitter even though I’ve registered for emails from Sanofi about the Auvi-Q and received an email from them on October 22 reminding me to use discount cards before they expire.

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Questions folks have right now include:

  • What autoinjector do we get in the meantime if we’re returning recalled ones?
  • Do we need a new prescription?
  • Will Sanofi reimburse for replacements and if so, do they have to be of the same brand or can they be for a competitor model?
  • Will the failures as reported be confirmed and if so, how?
  • Will the expense and public relations fallout mean even higher prices for Auvi-Q in the future?
  • Are expired Auvi-Q models affected or those only within the current expiration date range?

Also, the wording of the announcement has a lot of people confused because it talks about specific expiration dates and then also says all injectors on the market are impacted.  The announcement also talks about hypersensitivity which is odd wording.

You could view the recall as being in an abundance of caution and therefore showing how sensitive Sanofi is being to consumers or you can wonder about the timing and the lack of actual clear instructions for how to handle the issue.  People who have relied on EpiPens may be saying “told you so” while those who embraced Auvi-Q may be wondering about making a switch, we still don’t know enough at this point except that how this is handled going forward will certainly impact consumer perceptions.

The costs of replacing medication, between new doctor’s appointments for prescriptions, potentially missing work or school to sort matters out, and more are factors that Sanofi can’t control.  I have preferred the Auvi-Q in form and function since it was released but will be sending my daughter to school tomorrow with a set of EpiPens.  The sheer expense of a mid-year replacement (ie, replacing the EpiPen with an Auvi-Q if new batches ship) make reverting back to the Auvi-Q another year away for us.

No matter what take we have as the story develops, safety is always a priority.  Though I’m no medical expert or professional, my standard operating procedure for food allergies is: Avoid allergens and respond appropriately in the event of known ingestion or a reaction.  Always carry two autoinjectors and practice your allergy action plan.  If all you have is an Auvi-Q in the event of a reaction before you can replace it, use it.  The same goes for using an expired autoinjector – if it is all there is and there’s no time to waste, use what you can safely use.

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/

Lobbying for Sesame Labeling in Washington, D.C.

In January 2013 I first became involved in the Center for Science in the Public Interest (“CSPI“)’s efforts to petition the FDA to require labeling of sesame in a manner similar to labeling requirements of the “top 8” allergens under FALCPA.  By November 2014 when their petition was lodged, they had put together a solid argument and gathered support from allergists as well as families impacted by the lack of sesame labeling under current law.  The Citizen Petition specifically requests that the Food and Drug Administration issue a rule that would:

1) require sesame-based ingredients to be listed by name (“sesame”) in the ingredient lists of all foods and;

2) add sesame to FDA’s list of allergens in Sec. 555.250 of its Compliance Policy Guides Manual, “Statement of Policy for Labeling and Preventing Cross-contact of Common Food Allergens” to address both labeling and cross contact issues related to food manufacturing practices.

November 18, 2014 Citizen Petition, pg. 2.  Note that this is different than amending 2004’s FALCPA to add sesame, that would be amending a law while this requests a rule-making approach.

In March of this year, Laura MacCleery, Chief Regulatory Affairs Attorney for CSPI reached out and inquired about my availability to attend a proposed meeting with the FDA near Washington, D.C.  I didn’t know any particulars but I discussed the expense of the plane ticket with my husband, knew I could find a friend’s (comfy) couch on which to crash, and just needed the date to put everything in motion (and secure my mother in law to watch the kids).  By the time I did buy the ticket to D.C., I was able to fly for an approximately $11 fee each way, plus the $99 annual fee for the credit card that afforded me the bonus points I needed to fly.  That helped a great deal when it came to justifying a trip that put me in Washington for about only 28 hours.

Unlike other advocacy opportunities I’ve had in the food allergy arena when I wanted to make my voice heard regarding an issue, I wanted to make listening my priority (instead of speaking) on this trip.  Coming from a standpoint of believing disclosure of allergens is not remotely partisan, I wanted to know why there might be resistance to the idea of labeling for the presence of sesame in food products.  I’m not sure I have an answer at this point but I know where and with whom to start looking (I’m hoping to update on those efforts soon).  I also now understand the long process we may be in for.

I landed in Washington at about 3:30 p.m. on Tuesday, May 12th, and navigated the Metro to CSPI’s office to meet my friend (and possessor of the above-referenced comfortable couch) Jessica Almy, who is the Senior Nutrition Policy Counsel at CSPI though we met a while before that role as a result of her website Vegbooks.org (where I’m a contributing reviewer).  She introduced me to Laura and we went over the itinerary for the next day.  We’d all have folders with information about everyone in our group as well as the individuals we’d be meeting.  I’d brought a teal scarf for Laura as a gift – she knew it was Food Allergy Awareness Week so it was neat that the upcoming “Lobby Day” fell during that time.

Meeting Folder and Teal Ribbon
Meeting Folder and Teal Ribbon

I got to have a lovely dinner with Jessica, her family, my friend Jennifer from college and Chris from high school that evening on the rooftop of a pizza place in Adams Morgan.  I should have been tired but there is something electrifying about the capitol even after a day of travel.  There’s a line in Jane Austen’s “Persuasion” that comes to mind:

 ‘My idea of good company…is the company of clever, well-informed people, who have a great deal of conversation; that is what I call good company.’

‘You are mistaken,’ said he gently, ‘that is not good company, that is the best.’

And so, I had an evening with the best of company, not to mention yummy pizza!

My view by the Metro station on my way to meet my sister in law
My view by the Metro station on my way to meet my sister in law

The next morning I had made plans to meet my sister in law – we had never met in person before so I was thrilled to be able to coordinate breakfast on short notice.  My brother introduced us over the phone right before he deployed last year (he won’t be back stateside until late 2015).  She was incredibly sweet and our breakfast together breezed by at a place near the Senate office buildings where my first meeting had been set.  She even gave me a ride to the Hart Building which was great because we got to visit a little longer that way.

Senate Office Building
Senate Office Building

Once inside the Hart Building, I navigated the marble halls to find the office of Senator Murphy of Connecticut.  Laura was waiting along with Rachel Clark, the legal fellow for regulatory affairs at CSPI, and two other parents of a child with sesame among his allergies, Rob and Christine (Rob asked me to just use their first names in my post, I’m happy to oblige though it feels very informal).  Brian Heller, who operates a change dot org petition started 9 months ago seeking sesame labeling and which was cited in CSPI’s Citizen Petition to the FDA, had e-mailed to indicate he’d skip the morning meetings (and lunch) but link up with us at the 3 p.m. FDA meeting later in the day.

Laura handed me a small red cloth bag, remarking “one good turn deserves another,” and inside was a turquoise ring she’d handmade.  I know it may seem off topic to mention these details but each time I try to write this post without the personal aspects it just doesn’t match the way my brain processes experiences.  I think understanding people as both professionals and as people has always been a crucial part of advocacy to me.  I love that so many aspects of ourselves can co-exist in a given person.  We can be mothers and crafters and lawyers all rolled into one.  Her personal connection to food allergy is that her husband has an allergy to shellfish – I think if we include just one degree of separation with the 1 in 13 affected by food allergy, we’d have a very big portion of the population included, indeed.

With Laura MacCleery (left) at the Hart Senate Office Building
Me (right) with Laura MacCleery (left) at the Hart Senate Office Building

At any rate, we met with Senator Murphy in his office and told him our stories.  My story focused on label reading and touched upon when E was diagnosed, but Rob and Christine’s story of their son got to the heart of the issue.  Encouraged by a pediatrician to expose their approximately 8 month old son to other flavors when he wasn’t interested in solid foods, they’d touched the tiniest bit of hummus (which contains tahini, derived from sesame) to his lips when he began vomiting, breaking out into hives, and swelling.  He thankfully survived the experience but their lives were forever changed.

Senator Murphy was gracious and attentive, but also compassionate especially since his own family had been touched by food allergy in the past.  (He did ask about the support of other food allergy groups which has spurred me since to contact AAFA’s Kids With Food Allergies and FARE to see where they stand regarding sesame labeling.  Responses are still pending and I’ll update when I hear back with something official.)  I managed to tweet after each meeting at the Hart building though the day became so much more fast paced afterwards that I didn’t get much documented online.

Next we were able to meet with staff at Massachusetts Senator Markey’s office – it felt strange to tell our stories again but each time we’d find more of a rhythm.  Christine had to run an errand so Rob and I took turns sharing our history with sesame allergy and food allergies in general.

The response we got was inquisitive and receptive.  I was really enjoying getting to see all the offices and take in the questions that people were offering.  I had a printed picture of my kids with me at Laura’s suggestion – it was from a recent comic book convention we’d attended so they were in costume as Gandalf and Galadriel from Lord of the Rings.  I so closely guard their identities online that it felt strange to be showing off their picture but I think they would have liked that they were there with me in that way.  Plus, my mother in law is pretty great at making costumes!

Our final meeting “on the hill” (see, I’m using the lingo!) was with staff from (CT) Senator Blumenthal’s office.  I had to snap a picture of the Lego display in the waiting area!

Lego Capitol Building
Lego Building

For this round of storytelling I took out the expired Auvi-Q set I carry in my purse (I always carry the most recently expired auto-injector set we have just in case it is of use) and offered information about needing not one, but two doses and how that related to emergency service response times.  I wanted to convey the seriousness of exposure and how lack of disclosure puts us all at risk.  Rob also was sure to share the fact that even restaurants trying to do the right thing for food allergic patrons would often have to correct themselves when they learned that bread items could contain sesame even if the familiar seeds were not seen on their exteriors.

We then left the Hart building – we even walked past Senator Bernie Sanders (a presidential hopeful) as we headed to lunch which was really neat.  At lunch we were joined by CSPI Co-Founder and Executive Director Michael Jacobson, PhD. and Jane Welna, the Development Director at CSPI.  The conversation was great, especially since Michael Jacobson was at the forefront of CSPI’s efforts to get cochineal (aka carmine) labeled by the FDA 10 years after CSPI’s citizen petition was filed in 1998.  It is a red dye that can cause allergic reactions, aside from the fact that it is derived from an insect.  It, like sesame, was hiding on labels.  Carmine would previously be labeled as “color added” or “artificial colors,” which makes sense since people aren’t keen on bugs in their food.  I’d hate for sesame labeling to take 10 years but I do recognize that time shouldn’t be a barrier to trying to seek change.

Union Station
Union Station

The group that headed to the Metro to go to the FDA’s Center for Food Safety and Applied Nutrition included myself, Laura, Rachel, Rob, Christine, and Michael.  Unfortunately we didn’t get to meet Brian in person as planned as we discovered he’d mapped his way to a different FDA office location 20 minutes away just as we were being called into the meeting room by April Kates and Carol D’Lima with the FDA.  We were able to get Brian on his cell using the speaker phone system in the conference room so he could participate, however.

Laura talked about the Citizen Petition from November and stated our purpose in being present was to find out what the FDA thought of it and to learn if there was anything we could do to assist in processing it.  We were informed that there were other petitions ahead in line and that responses were of late in excess of 40 pages (some even 70(!) pages) – the implication being a response takes time to get to and time to draft even when its time has come.  We pressed on.  I knew from the packet we’d been given that Carol D’Lima, FDA Compliance Officer, had a background that included work researching undeclared food allergens and their impacts.  From the discussion it sounded like she had already began researching data from which to prepare the FDA’s response so it is encouraging that she understands the interplay between labeling and hidden allergens.

There were two points of confusion that I made note of during the over one hour meeting.  One was the distinction between the change dot org petition administered by Brian and the Citizen Petition filed by CSPI.  A few times the FDA representatives looked confused when a piece of information was referenced regarding the change dot org petition because that same request or information was not a component of the Citizen Petition before them for review.

The other issue was that it seemed as though the FDA wanted to find out if they needed certain forms of data to support adding sesame to labeling – the law doesn’t seem to mandate it but they referenced needing information for a preamble a few times.  The resolution ended up being that they would verify what data may be needed, if any, before efforts are made to mobilize and provide the information.  They seemed concerned about putting anyone through the trouble of marshaling resources before they’d verified what they may (or may not) need.  So no call to action at this particular instant, though they kept circling back to the concept of showing the harm that not labeling for sesame would be causing.

Some other takeaways from my notes… Though many arguments for labeling sesame begin with pointing up north (Canada) and across the point (the UK) for the proposition that it would not be burdensome for many manufacturers to comply if the FDA mandated sesame labeling stateside, the suggestion was met with the remark that the FDA has to look at US data/needs.  Which I understand, though I don’t think it negates the extent to which worldwide impacts are instructive, especially since one of the things implicated by increasing US sesame allergies is exposure to ethnic foods featuring the seed and its derivatives.  There’s also immigration and international travel to consider to a much lesser extent.

Finally, I got the feeling that the pending response to the Citizen Petition wasn’t what it promised with the term “response.”  What I mean is that I had envisioned that the FDA was preparing to dispute or agree with points in CSPI’s filing when instead they were trying to anticipate push-back depending on whatever position they take and address that commentary in advance.  I get into that trap when I draft legal briefs, I anticipate the response to my words and try to head off those arguments while also making my own.  It is a tough spot to be in but I can see how wanting to get something right would benefit an underlying cause even if it front loads a lot of the waiting time.  And let’s hope we’re not talking about 10 years like labeling carmine, especially with “Dear Colleague” letters hopefully coming from the legislative branch voicing support for sesame labeling.

By the end of the meeting, as we were being walked to the exit to return our security badges/stickers, our hosts had warmed up considerably and thanked us for our time.  My first thought as we walked out was that as encouraging as the Capitol Hill meetings had been, receiving resistance on the issue with the FDA made taking the effort to have the meeting all the more important.  Better to know now what concerns there are and how to counteract them (even if their basis seems more related to industry than to being legally enabled to make the regulation).

People have asked me how the day went and I’d say it was fascinating and amazing.  I feel like I made new friends and connected with existing ones.  I made it to my plane on time for my trip home and arrived in the wee hours of the morning on Thursday so that I could be there for my daughter’s school musical debut as a member of the ensemble – keeping that promise to my baby girl was incredibly important to me.

I’m sorry it took so long to get something online about the whole day.  I wrote notes and typed drafts of this post and would put them away.  I’d return and tinker and tinker again.  I sent emails to KFA and FARE, I messaged back and forth with other advocates.  I had no idea what to expect from a “Lobby Day” and now feel like I’ve learned a great deal – hopefully some of it has been of interest!

Even with listening as the theme of my trip, I did find myself honing my story as May 13th progressed.  For example, some don’t even realize that not all ingredients have to be listed for a given food.  Sesame can hide under alternative names (tahini and the like) but the scarier situation is one where sesame hides as “natural flavor” or “spice.”

Also, there’s the idea that my daughter, at almost age 7, is reading labels for herself and I want, I need, for those labels to tell her the truth.  I will not always be here for her and traveling across the country to talk about labeling is an outgrowth of the fact that I can’t actually keep her safe now or in the future.

I can’t guarantee that she won’t be exposed to her allergens, or that in my efforts to keep her safe I’m not opening her up to censure from her peers.  In the same way that I didn’t know if I’d always be around to make meals for her (this blog was meant to chronicle recipes she could actually eat), I won’t be there to call companies or ask questions on her behalf.  I need to teach her what I can but also see what I can do to change the world around her.

My mother often told us that the reason she worked to teach her fellow nurses was because she wouldn’t always be around and she wanted to help the next generation of nurses so they’d be effective caregivers for her children even as adults.  I feel the same way about access to affordable epinephrine, stock epinephrine, labeling, and disability rights for those with food allergies.  And to be honest, much like hand washing is beneficial for the health of all students, not just those with food allergies, disclosure on labels benefits so many.  Even those who may react to foods for the first time and have no way to even begin to inquire whether something like sesame is the culprit because it simply isn’t on the label.

When someone leaves an allergist’s office with a food allergy diagnosis, they are given a prescription for (often costly) epinephrine but they’re also given a prescription that is harder to fill – allergen avoidance.  In that sense it is fitting that regulation of both foods and drugs come under one organization’s control, because they are entwined.  I’ve referenced this quote before, but it continues to be apt:

‘Let food be thy medicine and medicine thy food.’  – Hippocrates

Avoiding certain foods is a minute to minute prescription when you live with food allergies and knowing where sesame may lurk is a medicine whose time has come.

If you’d like to support food allergy labeling efforts, you can learn about donating to CSPI here.  I’m hoping to write more about labeling on the Allergy Law Project in the future but in the meantime, my posts on this blog about labeling are here, here, and here.

[Update 5/22/15: You can read FARE’s statement here.]

Advocates in Action – AB158 in the 2015 Nevada Legislative Session

Caroline Moassessi - 5/4/15
Caroline Moassessi – 5/4/15

Caroline Moassessi and Kacey Larsen (among many others in Nevada) drop everything and spring into action multiple times a month when the legislature is in session.  Last minute hearings?  They’re there and rallying everyone else behind the scenes.

The best part is that I’ve had the chance to see them blossom into seasoned agents of legislative change just between last legislative session (2013) and this one.  They get to the point but manage to bring personality and passion into the mix.

Thanks to my colleague Marc Randazza, I’ve learned it is easy peasy to get video from legislative hearings downloaded and made readily available.  As Marc says, it is “[n]ice sunshine,” a reference to the sunshine act (in Nevada it is known as the open meeting law):

I’ve done just that with Monday’s AB158 hearing regarding epinephrine in camps, restaurants, and other public non-school areas (since schools have already gotten the stock epi treatment in Nevada).  I wasn’t able to watch it stream live since I was at an appointment with my son but it was posted online in about two days.

Senator Hardy gets things started and is followed by Marsheilah Lyons from the Legislative Counsel Bureau, Michael Hackett, who is so kind to continue donating his time to this cause, then Caroline Moassessi of Grateful Foodie, her daughter, RN Kacey Larsen, and Dr. Stuart Stoloff.  The clip is not that long and gives some great talking points as well as showing “how it’s done” when it comes to legislative testimony.  Keep it brief, clear, and informative but also give it a little heart.

Did you catch Dr. Stoloff’s point about reactions to medications?  And the percentage of reactions that occur outside of the home?  Very useful tidbits if you’re putting epinephrine access in a broader scope.  People often pre-submit written testimony so their spoken testimony supplements the written remarks a lot of the time.  I’ve linked to some of the testimony that was submitted for this particular hearing (and this is the news article Caroline shows briefly in her testimony):

Thank you to everyone working on this, including those who’ve submitted comments on the legislative website and who have written notes of thanks to their representatives in the Senate and Assembly.  This enabling legislation will make such a difference.  Go Nevada!