FAACT's Roundtable

Ep. 233: Learn about California's Senate Bill 68 ADDE (Allergen Disclosure for Dining Experiences)

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We’re exploring new California food allergy-related legislation with change-maker Robyn Huey Lao, who is a nurse practitioner, mother of 9-year-old food allergy advocate Addie, and the patient advocate leading the charge for California SB 68: ADDE, which stands for Allergen Disclosure for Dining Experiences. Robyn shares how passion and necessity turned an average family into advocates working to uplift our food allergy world. A special surprise guest joins Robyn!

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Caroline: Welcome to FAAACT's Roundtable, a podcast dedicated to navigating life with food allergies across the lifespan. Presented in a welcoming format with interviews and open discussions, each episode will explore a specific topic, leaving you with the facts to know or use.

Information presented via this podcast is educational and not intended to provide individual medical advice.

Please consult with your personal board-certified allergist or healthcare providers for advice specific to your situation.

Hi everyone. I'm Caroline Moassessi and I am your host for the FAACT Roundtable podcast.

I am a food allergy parent and advocate and the founder of the GratefulFoodie Blog. And I am FAACT's Vice President of Community Relations.

Before we start today's show, I just want to take a moment to thank the American College of Allergy, Asthma and Immunology for their kind sponsorship and for their support throughout the years.

We're exploring new California food allergy related legislation with change maker Robin Huey Lau, who is a nurse practitioner, a mother of nine year old allergy advocate Addie, and the patient advocate leading the charge for California Senate Bill SB 68 ADDE, which stands for allergen disclosure for dining experiences.

Robin will discuss how passion and necessity turned an average family into advocates working to uplift our food allergy community. And Robyn will be joined by a special surprise guest.

Welcome, Robin, to FAACT's Roundtable Podcast and listeners. There's an extra special surprise here. Addie is joining us. So Addie, welcome. We have two amazing advocates here, so welcome to Facts Roundtable podcast.

Robyn: Yay. Thanks so much for having us.

Addie: Yeah, thank you.

Caroline: You're welcome. I'm so excited.

So we're just gonna jump right into our conversation here and we're gonna start with Robin, can you share when you discovered your daughter's allergy and then what inspired a food allergy advocate?

Robyn: Yeah, we found out pretty early on that Addie had allergies. She was only about three months old where she was nursing and would break out into these rashes and had terrible eczema where she looked so bad, she looked like a burn victim.

And I'm actually a pediatric nurse practitioner. So at first I thought, oh my gosh, am I just paranoid or is this like beyond normal?

Brought her into her pediatrician,

did a lot of testing and found out she was allergic actually to the top seven of the top nine allergens at that time.

So we found out pretty early and I went on an avoidance diet.

Her eczema got better, her skin healed, and that led us to kind of where we are now with now our life of food allergies.

Caroline: Oh, my goodness. Okay, so Addie, you are a fierce advocate at nine years old, which is like, so incredible and amazing.

So what made you say, we got to do something here, we got to create a bill? Like what? What came into your mind?

Addie: Well, when I dine out at restaurants, I always have to be super careful with what I'm eating.

And I think that SB68 ADDE will help restaurants labeled with the top nine allergens.

So kids and grownups like me that have food allergies can eat out safely and not worry about what they're going to eat.

Caroline: That is amazing.

So now let's jump into discussing kind of the why and how you decided to engage in creating this legislation. So, like, what was the process you went through to get this going?

Robyn: Well, I mentioned before, I'm a pediatric nurse practitioner. And so when I moved to Sacramento, my goal was to really start a Sacramento chapter here for our national organization called NAPNAP.

So it's a national association of pediatric nurse practitioners. So I was a San Francisco chapter president in the past. And so moving here, I was like, wow, this is perfect.

We're at the Capitol. And so we started that in 2020. I was the founding president,

and now I'm the current legislative chair.

And so through that, I kind of learned of, you know, how to set up a Day at the Capitol, how legislation works. And Addie saw me doing some of this work and she was like, oh, well, I want to do this and let's do this for food allergy.

You know, she started getting really interested last year.

And so I guess also the why or how we did this, basically we found this really wonderful law review article. So I can't say I did all the research myself.

It was this wonderful Law review by Dr. Doctorov Talking about menu labeling for allergens, and gave me all the background. And so basically brought that with a little two pager summary.

And Addie and I went to the Capitol in October to propose this idea, met with Senate, several legislative offices, and we were happy to find Senator Menjevar.

You know, we targeted asking her to meet because we saw that she was on the Senate Health Committee and she was an EMT by training. But what we didn't know is that she herself has food allergies, which she disclosed later on.

And so, you know, right after we met, they were so excited about it. The following week they told us that she was interested in authoring it.

Caroline: That's incredible. Okay, so Addie, when you first went to the Capitol, were you scared? Were you nervous? Were you confident? Like, what were you thinking and feeling?

Addie: Definitely nervous. But also, I think I felt excited because we get to be meeting with so many Senate aides, we'd have a chance of changing California.

Caroline: I love how you're just saying we met with Senate aides like an old pro.

I love this. You are going to do amazing. Not only this session with this bill, but I don't know, we have to keep an eye on you in the future.

Robyn: Yeah. And Addie would start every meeting, like, she would tell them her little spiel she had memorized. So it was really great to see her in action.

Caroline: That is so good and so powerful. You know, when you look back, when you see a lot of change that happens, people think that kids don't have a voice, but kids have a strong voice.

And so you starting that meeting really proves to everyone that all of us can advocate and make a difference. So bravo, Addie.

Robyn: Thank you.

Caroline: So now let's turn to the bill itself. So can you explain exactly what is California Senate Bill SB16? Adde. Addy.

Robyn: Addie, do you want to say what IT stands for?

Addie: ADDE stands for Allergen Disclosure Dining Experiences.

Robyn: Yes. So SB68 would require restaurants in California to label the top nine allergens on their menus. So, basically, what we're asking for is for restaurants to state exactly what's in their dish.

We're not asking for cross contact. We're only asking for if any of their dishes contain the top nine allergens, and if so, to clearly state that so that people with food allergies like Addie can know what to avoid and know specifically what to ask about.

You know, we're hoping with this bill that it's going to bring more safety to the community,

because we know that there have been accidental exposures. We know that the data has shown that even with verbal communication to the waitstaff,

over 50% of reactions still occur.

With labeling and verbal communication, that percentage has dropped down to 13%, which is huge. Right. And so, really, from a safety standpoint, this is a really important safeguard. And so, through my experience in healthcare, you know, in healthcare, we all the time are trying to prevent medical error.

Right. Cause we know people are human.

So what can we do to really prevent that? And so, really looking at risk management,

there's this Swiss cheese model that I love because I think it really shows it perfectly. Right. So if, basically, if there's layers of cheese with holes in it, the holes are the gaps where mistakes can happen.

Right. So someone forgets to Do X. Oh, you forget, like this food item has dairy in it. Right. So mistakes can happen.

And but the cheeses are the safeguards. But if their holes all line up where then a mistake is able to get through, that's how the mistake ultimately reaches the patient or the person at risk.

And so having more safeguards in place is what ultimately prevents the mistake.

And so often what happens with medical errors, we're always looking at, well, how did this happen? Right. And people like to put the point their finger and blame one person, but often it's the systems, it's the Swiss cheese.

Right. So it's okay, X happened and that's how the medication got released and then X happened and then that's how this was able to happen to this. Right. And so it's basically all the steps and how can we prevent the mistakes is by again, placing these safeguards.

So we really believe that by labeling, this is the ultimate safeguard. Right. This is the gold standard of how do we have informed conversations with our waitstaff? It's us. The patrons can double check first what's on the menu,

what's listed. We could have the conversation with the waitstaff who then double checks with the chef and then can ask about cross contact if needed. And then coming back,

double checking again. Right. Just like when we're giving a high risk medication, we're double checking that with another nurse, with another person, with the medical record. So you're like visual communication,

verbal. So we do all these things in healthcare and why doesn't that exist for something so high risk, such as dining out for food allergy patients? So that's how this was born.

Caroline: I love how you took your experience and your intelligence and your knowledge and then married it into finding a solution for our food allergy world. That's brilliant. And the Swiss cheese example, so relatable.

Once you were explaining the Swiss cheese, I was like, well, of course there it is.

Robyn: They use it in aviation safety as well. You know, all these like high risk settings where life's at risk. Right. And so this is a perfect use for that again.

Caroline: That is amazing. So now how can people find out information about the bill?

Robyn: Yeah. So please go to our website, addictellsall.com that's where we have our signup links. If you want to volunteer in helping,

either reach out to organizations and businesses and restaurants to ask for support, or if you want to volunteer to help, come with Addie and I, either virtually or in person to meet with legislative offices. There will be opportunities along the way for sure.

Caroline: And Actually, on that font right there, do you have any advocacy day plans?

Robyn: Yes. So our Next one is May 12, but I think this is probably airing after that.

You know, our next step is basically we're going to find out if it passes the Senate Appropriations Committee by May 22 and then after that it'll go to the Senate floor that first week of June.

So May 12, we're really hoping to meet with the Senate Appropriations Committee senators leading up to those two big dates, but then there's still opportunities. So after May 12, the dates aren't set yet, but the next step, if we pass the Senate, it's going to go to the assembly side.

And so I'll go to the Assembly Health Committee first.

And that will probably likely be mid June to mid July.

So most likely around late June, early July at the latest, we'll have our next advocacy day.

Caroline: And listeners, I will make sure we have all the links that are in there for that. And so now I have another question on that. So when you spoke to the senator and you were designing the bill, so did you just kind of list out all the things you wanted, like your dream list or how did those conversations go?

Robyn: Yeah, good question. You know, I provided them the law review and then in our two pager we had the data behind it of the. Why? Why is this so important?

The research actually shows that labeling does decrease the risk of reactions.

And then we basically put our wish list, if you will, of like this is what we would want it to include.

They have legislative council that then drafts that. So you know, I'm not a lawyer, but they kind of do that piece. And then we were reviewing it when they have drafts and the senator of course is approving it.

And the senator really wants a workable bill.

And I do want to say this is, you know, very community driven. I think where we are now. It's just been so encouraging to see all the advocates in the food allergy community come out to support us.

New advocates like us food allergy moms, dads and patients, you know, seeing this in social media and wanting to kind of jump in and pitch in their support. So that's been amazing for us to see.

And I think if people are interested in helping, you can still join the effort. We have links on our website to kind of add to our our list of people so we know to contact you to follow up.

But I think where we are is we're really hoping to, you know, gather more organizational support which every day we're receiving more sign ons, which is Exciting.

We're hoping to get more restaurants to sign on.

So we recently got our first restaurant chain to sign on, which is really exciting.

So what people can do is, you know, if they have favorite restaurants that they know are food allergy friendly, whether it be a small restaurant or a larger chain restaurant, to really talk to the restaurant staff, ask their manager, you know, and say, hey, is this something that you'd be willing to support?

Provide them some information, get their contact and send it to us? You know, things like that, that can really help our effort.

Caroline: That is fantastic. And again, I promise all the good links so you can get hold of these, too.

We know that a few weeks ago, you were at the Capitol and you were doing your work there,

and Addie, your class, or huge portion of your class joined you. So can both of you talk about how you organized that? And then did they say things or were they just there giving support?

Did they write letters? Were there signs? You can explain to our listeners what happened, because I saw some pictures and it looked very powerful.

Addie: Well, yeah, most of my class came.

They had signs for me, and they got to say their name and say that they supported my bill.

Yeah. And they also met with a few of the Senate aides in the offices.

Caroline: That's pretty exciting. Not everyone gets to do that in their lifetime, I hope. You know, Addie, this is not just normal, everyday, like, life experiences. This is very special.

Robyn: Yeah. There was even a press conference, and they got to take a picture with the senator and hear her speak directly to them with news media in the room that was taking footage of it.

So they were even on the local news, which was amazing.

Caroline: That is incredible. And so how did you get all of that organized? Or did it just start to snowball?

Robyn: I know. Well, I mean, I guess it started with me telling Addie's teacher she was going to be missing school that day.

But I have to say, you know, she has a very supportive school, very supportive teacher. She's in a rapid learner program.

So the parents are also very invested.

And so I asked them, and I pitched the idea. I said, hey, you know, if her classmates want to join, we could make this a field trip, an educational opportunity.

And they were all about it. They were like, oh, my gosh, yes, this is such a great idea. So I was able to set up meetings with the Senate offices, and we divided them into groups of five.

They all had their little pitch that they had written down where they asked the legislative aide, you know, can you find which menu item has nuts in it?

And Then they weren't able to because it wasn't labeled, you know, so it was like a really good activity. And then the kids were able to give backs. And then we then set up a press conference, really wanted to highlight their support and things like that.

So they all had matching shirts with SB68. So it was really exciting. I think all the kids were really happy to be there to support Addy. And it was just so touching to see.

Caroline: It really is touching to see how the community's coming out and supporting you because it's a long process and sometimes it takes years to make things happen. So it's just so beautiful to see how everyone's coming out.

Robyn: And I just want to add a big shout out and thank you to AAFA, our co sponsor for SB68. We have come so far only because of their support. So thank you, afa.

Caroline: We do love AAFA here.

They're good friends and I personally learned how to do what I did back in the day in terms of advocating from AAFA. So shout out to AAFA for me too.

So our time has come to an end with each other. This has been so much fun.

So before we go, so do either of you or both of you have a parting thought or something you would like our listeners to hear from you?

Addie: I want all kids to know that even though you're still a kid, you can do big things.

Robyn: You know what? I think Addy said it all and.

Caroline: I agree with you 100%. Addie, you nailed it. You're nailing this. Again, thank you to both of you. We really appreciate your time. It's obviously very time consuming for you to get out there and work on legislation like this and change like this.

So we know you making time for us really wasn't easy and we appreciate it and we're all cheering you on and we're looking forward to following you. And again, listeners, I promise, go to the Show Notes.

You're going to have all the links to support, to learn, to participate, and to follow along as well. So thank you to you too.

Yay.

Robyn: Thanks so much for having us and thank you for fact for supporting sb68.

Caroline: You're very welcome.

Before we say goodbye today, we just want to thank the American College of Allergy, Asthma and Immunology one more time for their kind support of FACT's Roundtable podcast.

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