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.
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.
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.
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!
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.
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.
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!
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.
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.
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):
@woodrumlaw You look on the specific bill agenda on the legislative website, they’re all videotaped. Nice sunshine.
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!
One phrase has the power to diffuse situations, to make people feel heard, to recognize in them a hurt even though there may be nothing you can do to help.
Ever since we launched the Allergy Law Project, there have been messages, emails, and phone calls from people who are struggling to forge their way in advocacy for themselves and those they care about. A common thread seems to be that they want the dangers of exposure to allergens recognized. Sometimes the desire comes from a place of fear – sometimes from a place of experience – and sometimes from a mixture of both.
As we head into Food Allergy Awareness Week in the United States on the tail end of both Teacher Appreciation Week and Nurse Appreciation Week, it makes me think of how much it has meant to me that the other people in my children’s lives like nurses and teachers understand the preciousness of their charges. Teachers stay up late preparing lesson plans, grade papers on weekends, and support students in extracurricular activities when they probably could use a break instead. School nurses manage medications, histories, and have to know students well enough to tell the difference between the flu and just having a bad day.
My mother is a nurse. My sister in law and mother in law are teachers. I may never have walked in their shoes but I can say to them that I understand the challenges caring brings.
I am able to tell clients that I understand the feelings of frustration that accompany the discovery of false friends, of soured deals, and broken promises. Knowing how nervous I am watching my child eat a new food, or what its like to tell her she can’t have some amazing looking treat just like her peers, my first reaction is one of support when another parent confides in me about their own trials. Maybe they’re worried their child isn’t as tall as the other kids, or that their ADHD gets them into trouble, or any of the other worries we have for those we love.
Sometimes the tables turn and someone understands where I’m coming from and I’m reminded of how important compassion is.
On Sunday I got out on the bike again after a much too long hiatus. I couldn’t keep up well enough with the group so I rode a ways back. But I didn’t ride alone, because someone was willing to ride at my pace and keep me company. When I turned around so as to not overdo my mileage, he volunteered to ride back with me. We had a lovely chat and the 180 mile per week rider told me he understood getting into training all over again. I was beaming, though sore, after the ride – how kind he had been! He made me forget how ashamed I was about all the weight I’ve put on and about the way my fitness has diminished to nonexistence. I promised him I’d come out and ride again and again until my goal race in October.
On another day, one of our librarians at our favorite local library pulled me aside and asked where I get all my cute dresses. She didn’t know I’d been wearing dresses more and more because not much else fits, she didn’t see the “me” that I see in the mirror and it reminded me that we have to get out of our own heads once in a while and see ourselves as others do (unless they don’t have nice things to say, in that case ignore those people of course – I’m no stranger to cutting off contact with toxic relationships!).
Then a friend told me yesterday about a tradition in her home country of Japan for mother’s day – it is not a commercial holiday, but instead red carnations are given to mothers as tokens. White carnations, however, are given to those who have lost their mother so that they might be remembered too. How wonderful to both celebrate and remember at the same time. I think the same should be true for something like Food Allergy Awareness – we can look at how far we’ve come in the food options we have, the awareness, the advocacy…but we also can’t forget the lives lost to anaphylaxis.
The long and short of it is that even when you don’t know what to say, just let someone know you hear them and hope things get better. Life is too precious, depression is too invisible, and self care too absent from frantic days. So my hope for all of you is that you feel heard, that you feel understood, and that you can channel the kindness you receive from others back into your community.
Just to prove how much I mean all this, here’s the very last picture I took with my camera before it was stolen last week. It’s one of the Teal Aprons my mother in law made to help me thank allergy cookbook authors that have helped us make safe food for E. If it feels like an odd juxtaposition, it is, because life is just like that. Take the good with the bad and keep on swimming.