From Awareness to Action with AAFA's Kenneth Mendez
Transcript Disclaimer:
This transcript was generated using AI software from the original podcast audio and may contain errors, omissions, or minor inaccuracies. It has been lightly edited for readability. Please refer to the full podcast episode for the most accurate representation of the conversation.
Amanda Whitehouse, PhD
Welcome back. In today's episode, I am so excited to be joined by Kenneth Mendez, president and CEO of the Asthma and Allergy Foundation of America, also known as AAFA. AAFA is one of the leading nonprofit organizations dedicated to improving the quality of life for people living with asthma and allergic diseases through education, advocacy, research, and community support. Their work has helped to shape conversations and legislation around food allergy safety, asthma care, stock epinephrine access, public awareness, and patient advocacy across the country. We are so thankful for their work. Before joining AAFA, Kenny spent many years working in healthcare leadership and advocacy, and throughout this conversation, you'll hear his passion as a food allergy parent as well. In this episode, we talk about AAFA's advocacy efforts happening nationwide, their work behind California's new restaurant allergen labeling law or Addie's Law, stock epinephrine, and the importance of helping families feel supported and empowered within the allergy and asthma community. This conversation is informative, hopeful, and such an important reminder this allergy and asthma awareness month that progress happens when communities come together. Welcome to the Don't Feed the Fear podcast, where we dive into the complex world of food allergy anxiety. I'm your host, Dr. Amanda Whitehouse, food allergy anxiety psychologist and food allergy mom. Whether you're dealing with allergies yourself or supporting someone who is, join us for an empathetic and informative journey toward food allergy calm and confidence.
Amanda Whitehouse, PhD 1:34
Thank you so much for being here to join me on the Don't Feed the Fear podcast.
Kenneth Mendez, CEO & President of AAFA 1:38
Thanks for having me.
Amanda Whitehouse, PhD 1:39
Of course. For people who may not know you, who may not know the organization, who may be a little confused like I once was about AAFA and KFA, tell us all about what you do and the organizations and yourself too, please.
Kenneth Mendez, CEO & President of AAFA 1:52
I'm CEO of the Asthma and Allergy Foundation of America. We're the oldest and largest nonprofit patient group advocating for the 100 million Americans with some form of allergic disease, whether that's asthma, allergies, food allergies, eczema. There are other atopic conditions. It's Atopic March. We've got a division called Kids with Food Allergies, which we acquired back in 2015 which really focuses on the food allergy component of things. But as an organization, we've always done all the allergies. KFA is a division within AAFA, but we generally do the same thing. It's through advocacy, support, and research to help our community.
Amanda Whitehouse, PhD 2:35
Wonderful. And how did you end up in that position? What was your career path that brought you there
Kenneth Mendez, CEO & President of AAFA 2:39
Sure. I have asthma and allergies myself, but the reality is two of my three kids have had severe food allergies and asthma. They're in their 30s now, or late 20s, early 30s. And so when you think about back when they were young, younger, years ago, things were completely different in terms of being a parent and trying to advocate and help your kids. So that's really how I got on this track with AAFA. Prior to AAFA, I was working for the trade association for the medical device industry, and that was the first exposure of mine to the healthcare field. But I was more in business operations, running the organization that way. And prior to that, I was working for a conservation organization in the nonprofit world, and then in the corporate world.
Amanda Whitehouse, PhD 3:29
I have so much empathy for anyone who was a food allergy parent that long ago. My oldest is 14. He's the one that has the food allergy. And even since he was young, the world has changed so much, and there wasn't a lot for me back then. But I can't imagine when your kids were that young.
Kenneth Mendez, CEO & President of AAFA 3:44
Yeah. It was challenging. Just the other day we were cleaning out our h- we were purging stuff, and my wife was going through the binders of information they had... she had from all the different groups that were out there then and the notes she was taking. But clearly back then, and one of the really interesting notes that we found on it was she had written down, she takes really good notes, was avoidance. And that has completely changed since then. But back when my kids were young, it was always about avoidance as opposed to early introduction, where we are today. So that was the major difference back then. But I still think you have many of the issues that we have today, which is once you're diagnosed with food allergies and you've got young kids, you have to figure out how to put a meal on the table, how to do play dates, how to navigate the whole school system. And, in our family at least, it was so it wouldn't take over their identity, that it was pretty much they could be with everyone else. But there were certainly occasions where I remember in preschool days the head of I think it was a summer music camp or something like that, she said, we're not equipped to deal with that. Go find someplace else." And, that, that's really hard, and I'm not sure we had the kind of protections that we do now for food allergies in a school setting or a camp setting or outside your home.
Amanda Whitehouse, PhD 5:10
Yeah, so much has changed. Unfortunately, I think some people do still hear responses like that. We're not equipped to, to help you. But so much has changed, and obviously you've gotten to be a part of that, being at AAFA. What are the main areas or ways that the organization is supporting and working on behalf of the allergy and asthma community?
Kenneth Mendez, CEO & President of AAFA 5:27
Yeah. So we do... w- we do research, advocacy, and support. So some of the research that we do, for example we do our Allergy Capitals report, our Asthma Capitals report, which gets a lot of media attention. A hundred largest cities and the ones that are most challenging to live in if you either have asthma or allergies. We also have a series called My Life With, and we have one that's My Life With Food Allergies. We've got Atopic Dermatitis in America. But the idea of all this and what we try and do as an organization is to bring the patient voice and to elevate the patient voice in these discussions, which helps fuel some of the advocacy work that we do. It's a circle where the person who's got the condition, the chronic condition, is at the center of everything we do. So we provide support through an online community we provide support through education, so all the materials we put out on our website. We've got an Ask the Allergist section of our website. We've got... Our KFA website has a food a recipe database, which had historically been, the attractive part of that. But so we do all those things. But when we pull the community together, we also hear stories we understand where people are coming from, and we want to make sure that whether it's regulators, school policy, or even companies that are developing new therapies, that they take into account the patient voice. So it's all those elements that, through our research reports, through our advocacy work, that we try to help the community.
Amanda Whitehouse, PhD 7:05
Yeah, all so helpful. One of the things we wanted to focus on today was all of the advocacy work that you're doing and some of the legal pushes that are getting exciting from the, obviously, the patient perspective being at the center of that work.
Kenneth Mendez, CEO & President of AAFA 7:19
Yeah. So on the advocacy front, we've been very active on a federal basis since I joined in 2018. FAA reauthorization, for example, having epinephrine delivery devices, to supporting price caps on epinephrine delivery devices, but also opening up the aperture and the ecosystem of the drug pricing system, where it's not just one element, there are others involved that really drive some of the access issues for people who need to afford their medications, whether it's epinephrine, asthma medications, inhalers, all those kinds of treatments. So that's on a federal basis that we had started. And then most recently, probably in the last two years, we've been involved more thoughtfully and strategically on a state basis, because we're still a small organization compared to a lot of the other organizations out there. We've got a staff of about 23 people based in Washington, D.C., just outside of Washington, D.C. in Arlington, Virginia. So the federal advocacy made sense because we were here. But because we put out all these state-based reports and we use them for federal advocacy when we go meet with offices, we also decided let's strategically pick certain states. So we hired someone to do state advocacy for us. And then recently a year and a half ago, was when we really got involved in the menu labeling law in California and helped co-sponsor that and co-lead that, which was just-- As we're doing more of that now, it, it's incredible that we got that through because to introduce it in one year and have it go all the way through and passed into law is really challenging to do in any state because we're finding that in other states, not only with this law, with others. But it's that state advocacy work that we've been really trying to push because it's tough to get things done on a federal basis. And what we're hearing now is if you could get things done on a state basis, it can be really helpful on a federal basis.
Amanda Whitehouse, PhD 9:28
Especially in a state as influential as California, that's really creating a wave of motion now in other states. I just want to mention people I think will know this as ADDE Law. Robin and Addy Lao are the ones that people know as the face of this bill, and it's really exciting for us. So yeah, please tell us more about it and what the momentum is looking like moving
Kenneth Mendez, CEO & President of AAFA 9:47
Sure. First and foremost, we're lucky to have Robin and Addie. What you always need when you're doing state-based advocacy, even federal advocacy, but specifically in the States, is you need an advocate. You need people on the ground who can tell their stories. We hear this all the time from lawmakers is, "Tell us your story," because that really puts a face and an experience to whatever the wonky policy is that you're putting out. So when this first started when we st-first started with this, I think it was in January of twenty twenty-five, so this was last year, Robyn and Addie came to us, and we were happy to participate with them on this and really help ev-along the way, developing support, providing our staff. Alexa Jordan was the state-based person that we hired, who joined AAFA, had been an advocate herself when she was an undergraduate at Harvard. She joined us and then went out to Sacramento and helped educate the advocates and helped to quarterback this as it went through the legislature, because it's got to go through various committees. You need to get letters. You need to have people testify. And you need to have someone who's willing to be the voice of that, and then someone to coordinate that. And we were able to do that with Robyn and Addie, both because they had the network out there. We also had a network, so we worked together to push this through.
Amanda Whitehouse, PhD 11:13
Yeah, and I know that Robyn said multiple times that Alexa was just amazing at, guiding them through that process and we're so thankful for the work that she and that all of you did. If anyone's listening isn't really familiar with the bill, tell us more about it and what changes it's going to bring about. What are the gaps that it addresses?
Kenneth Mendez, CEO & President of AAFA 11:30
Sure. What it addresses in California is for restaurants that have 20 or more locations, they must label their menus with the nine allergens declared by law. And so that starts in July of 2026. The arguments we made is in Europe already, there are laws there. They've got more allergens than we do by law. I think there are 12 or 13 there. But when you go to the restaurants there, there's a labeling process so people can read the menu and understand what allergens are in the menu. Addie always told a great story. It's like playing, I think it's telephone, where you go to a restaurant. We experienced this with our own, with my own kids and myself, where the server will come to you and in the best of all cases, they'll say, "Do you have any food allergies?" And you'll say, "Yes." And then or you'll mention things, they'll go back and they'll check with the chef, but then the food comes out and sometimes there might be a mistake there.
So unless you look at the menu and you could drill down on what that menu item is and have the allergen listed there, then there's still a bit of uncertainty between the front of the house and the back of the house, when the server comes to you and asks you or looks at the menu.
When you start to put things in writing, then there's some accountability and there's some tracking, so people deserve to know what's in their food. And there's no uncertainty there, or at least it reduces the amount of uncertainty because they're having to put it on the menu in those restaurants, the ones that are 20 or more. And when you go to other parts of the world, like in Ireland, for example, I spent a lot of time talking to them about this. They take great pride in it, that they're able to know. They feel it's their responsibility. They want to protect their customers. They want it to be safe. So it's, they feel like it's their responsibility to know what's in their food, down the entire supply chain. So those are restaurant owners.
And, hopefully we can create that same culture here in the US because we don't have that. So when this starts in July of 2026 in restaurants in California, we're hoping that'll pave the way. And for people who have food allergies, who have historically avoided going out to certain restaurants, like I always know what it's like with our family. There are a few restaurants that you know are reliable and you trust them, but other ones you just don't go out to those restaurants because you just don't want to take the risk. And so it makes it very difficult because restaurants and eating, the people with food allergies realize how social it is and how much of that is part of our culture. So a lot of people don't go out to restaurants because they're worried that they can't trust what's in the food that's being served to them. So we believe that by doing this and by the restaurants that do this, then it'll ha- actually, hopefully increase business from people who are on the sidelines. And maybe some of the smaller restaurants will then adopt this kind of approach, and then hopefully this will pave the way for other parts of the country.
Amanda Whitehouse, PhD 14:44
That's what I always keep thinking about it. Once I feel like they realize how loyal we are when we are made to feel safe, there is so much business that we want to give them if they can accommodate us. But it wasn't as a smooth path. I know there was some pushback and lots of things around this bill. Can you talk about what some of the resistance and pushback was?
Kenneth Mendez, CEO & President of AAFA 15:03
Sure. In general, what always happens is when you put more regulation on an industry, they don't like it. And so we had to navigate that in the whole legislative process, where we tried to make the argument to industry that this is actually a safety issue. There are already food allergy regulations and training regulations in California. This just takes it a step further to provide safety for the community and for those patients. It was surprising to us at the last minute that when we went to testify, we had a whole bunch of kids. Alexa testified, Addie testified.
And so it was clear that it was a safety issue, but then when you have industry pushing back and saying there's a better way to do this, or we need to remove this burden then that's troubling. And so we had to navigate around that. And I would say not everyone in the food allergy community was supportive of it, so we had to navigate around that too, to basically say, listen, this is a best practice in other places like in Europe. Why reinvent the wheel? Let's just go simply just write down what those allergens should be on your menu, and let's not overcomplicate this.
Amanda Whitehouse, PhD 16:21
I'm glad you're willing to touch on it a little bit. As a psychologist that division within the community was really difficult for a lot of people. So I want to thank you and everyone there for stepping up and making us feel like we are supported and someone does have our back. This is what's best for us, because that was complicated for a lot of
Kenneth Mendez, CEO & President of AAFA 16:38
Yeah it is. Sure. And I appreciate that. I appreciate your support and the community's support. You know, our culture here at AFA and what we tend to do is, we're a little bit more behind the scenes. We try and drive things for what's best for our community. We're science-based, we're evidence-based. And so all those things were clearly what was driving our efforts in California. There's also a piece that there's the reality of putting together legislation where sometimes you have to compromise. So one of the things that we heard about was it might be a challenge to get this thing through because there are minimum wage requirements, for example, for restaurants now in California. It might hurt small businesses. So that's the kind of thing where, as an advocate, you have to weigh the benefits and the trade-offs around that and maybe start small and then build from there. So we never compromised in terms of what we wanted to do and what we wanted the disclosure to be. We started out asking for all restaurants, but I think as we got further in the legislative process, it was clear that it might have been tough to overcome some of the other external forces related to minimum wage and small business in California. I think the governor probably owned restaurants too, and might have had come from that background. So again, we wanted to make it easy for the governor to sign this and for legislators to basically support this.
Amanda Whitehouse, PhD 18:14
I think we all know that it's a win even though it might not look exactly how it started. I would love for you to then talk about how do we continue this movement? What's the effort look like moving this to other states and beyond?
Kenneth Mendez, CEO & President of AAFA 18:24
Yeah, absolutely. We're working on this. Once we did this, we had many advocates come to us who wanted to do this. And again, as we have started to do this... So that was last year this October that it basically passed, and then we started to have people. You have to get this going, close to a year ahead of time and develop your advocates, and sometimes you're not going to get it through the first time around. I think there's six states that we are looking at right now. We-we're close in some. The one that's probably the most promising right now is New Jersey, where we have had it their parallel bills co-sponsored in both chambers. Their legislative session doesn't end until the end of the year, close to January, so we've got some time line to basically get this through. So it needs to be heard in committee and then needs to continue to evolve through that legislative process. So that's the one where, you know as we talk about this, if you've got any listeners out there, having advocates on the ground who could reach out to us, where we could have you come in and testify in a committee meeting. And it's really easy. Just tell your story of what it's like to go out to a restaurant, and then how you would feel much more comfortable if you had something like this in place. That will educate lawmakers and help them get over the hump of additional regulation that they might be getting pushback from industry.
Amanda Whitehouse, PhD 19:57
Yeah, that's a good note. I think it's telling the stories that really connects people and makes it practical, not just another thing on the list of topics for the day.
Kenneth Mendez, CEO & President of AAFA 20:07
Absolutely. And I think what people have to understand about advocacy work is it's hard. It's not easy. You have to stay with it, and it takes time. We had a bill introduced in Maryland, time ran out. Their session just closed. We're working in New York. We're hopefully, we're hearing any day now, maybe something will get introduced there. We're working with leadership in New York City, for example. That, that, that is an interesting aspect because, first we went from federal to state, now on a municipal basis, but a place like New York City could be quite interesting for the rest of the state. So you have to try different creative approaches and prioritize. But again it boils down to having the right people in place, having advocates who could tell their stories, and then finding receptive legislators per what you're saying. When you go in and you tell their story, someone knows someone who's got a food allergy and then that can be really helpful to get things passed.
Amanda Whitehouse, PhD 21:09
Absolutely. And I love that progression, like you said, from the federal and down. but down isn't even the right word because it's all important and I think im- impactful in a different way. But a lot of people, myself included, don't understand very well the differences. So can you talk about what it's like to work on these laws on the state level versus when we're talking about a federal bill.
Kenneth Mendez, CEO & President of AAFA 21:28
Yeah. I would say the big picture from my point of view is that if you're doing something on a federal basis, apart from the politics and what we're seeing with Congress right now, but just from a structural point of view and government 101 they do this for a living. They get paid to do it, even though a lot of people feel like there's not much happening because we're not getting very many laws passed. But they're paid to do it. They have staff, and they're accessible. They're here and you could advocate with them. In fact, the last federal law we got passed was the FASTER Act, which actually created Sesame as the ninth allergy. So we were very much involved in helping to lead that. When you get to the state level, what happens is it really depends on the state. Some of the legislators are actually volunteers, or they get a small stipend. So they've got day jobs, but their legislative work is over and above what they do for a daily, for the- their daily lives. And there, there's a limited amount of time in session. So depending upon the state, some states' sessions are quite short or meet every couple of years. Some are more rigorous. So it just depends on the state. So you have to figure out what the structure is of government in each of those states, what the timelines are like, what the process is like. So that's in all 50 states. So then when you get to a municipal level like New York, so that's the city council, basically. How many members are there? 51 council members throughout, spread throughout New York City. So then you have to figure out how that works on a council basis. That's new for us. But again, that, that's an example of how it takes a lot of arms and legs to figure out how to navigate the various advocacy initiatives within state, federal, or municipal.
Amanda Whitehouse, PhD 23:27
Yeah, it's so complex, and I think that intimidates a lot of people
Kenneth Mendez, CEO & President of AAFA 23:30
It does. You're right. You're absolutely right. And again, the number one thing, if I could-- people leave here is if you could tell your story, come to us. And i- if we are working on a state, we obviously have to prioritize because we have a small staff, as I discussed with you. A lot of times what happened before we made this commitment to state advocacy and prioritized state advocacy, we would get things over the transom. People would write to us and say, "Can you write a letter of support?" Which we're always happy to do when we know about a bill. But in this case, where we're trying to drive things, we don't have the bandwidth to cover all the states, so we tend to partner and prioritize which states we have really strong advocates in.
Amanda Whitehouse, PhD 24:15
Yeah. one of the other things that I'd like to touch on before we wrap up this episode that's, bouncing back and forth between those state and then federal movement is the stock epinephrine laws. So I know in New York we've had some progress. It's one that people really care about.
Kenneth Mendez, CEO & President of AAFA 24:28
Yeah. One of the things that we're trying to do, at least on a state basis from the start we're working on this on the federal basis too, but on, on a state basis, is making sure that states understand that there are new delivery systems in place, that there's new technology. I think one of the things since I've been with AAFA in 2018, and I think about my own kids, generally it was only the auto-injector that was around, and now you've got many new technologies. You've got a nasal spray coming. There's sublingual under the tongue that's coming. So all these things are really exciting for our community because our community needs choice. So on an advocacy basis it's reaching out to the various states who have these laws in place to help make sure that it's not limited to old technology, that they're aware that there's new technologies. So right now, 10 states require epinephrine stocking in schools. Four of those states now, of the six-- four of those six states have the new language in that we helped to work on, which is basically to say epinephrine delivery device and not just an auto-injector. And then we've added six new states which will happen next year, that are where you'll have epinephrine stocking in schools. So that is really exciting for us. It's not going to happen until 2027, but some of that stuff is in the works right now. So again, that's really exciting for us, but it's state-by-state basis. We've got a whole database. We've looked at all the laws and, cataloging all that and making sure that we reach out on a systematic basis to states.
Amanda Whitehouse, PhD 26:12
Yeah. It really is meaningful. I think a lot of people think, "Oh, it's just all this, government legal stuff that's over my head." But these are really meaningful changes that are impacting us as people with different allergic diseases.
Kenneth Mendez, CEO & President of AAFA 26:22
If people can think about it this way, you walk around and defibrillators in public places, and you know that it would be great to have epinephrine delivery devices in those places as well, bundled with that. That would be terrific for our community because, there are federal laws, Dylan's Law, there's that passed in Wisconsin. There are ones where, you could train someone in understanding an anaphylactic reaction, have a Good Samaritan law in place where you could deliver epinephrine. Wisconsin's an example where you-- once you're trained, you can get epinephrine and carry it with you, so in case someone... you're recognizing someone has an allergic reaction, you could deliver that device to them that's the vision for the future. We'd love to be able to have that out there.
Amanda Whitehouse, PhD 27:11
Yeah. It's really exciting all of the progress that's been made so far. You mentioned a little bit about people being willing to get out there and tell their stories. Let's wrap up by telling them how they can get involved with AAFA and with KFA, and then how they can-- if they want to advocate, too, what should they do?
Kenneth Mendez, CEO & President of AAFA 27:27
Sure. If they visit our website, aafa.org, there's all sorts of good information in there if you're, you've newly diagnosed, if you have food allergies. But there's a way to get involved there. You could register. It's completely free to do that. You could just send us an email. If you're interested, just raise your hand and say, I live in this state. These are some of my issues, and I'd love to stay in the loop." And then we'll reach out to you as stuff starts happening in those various states.
Amanda Whitehouse, PhD 27:55
Wonderful. I'll put all of that in the show notes, and I hope this will encourage people to know they can be involved, they can make a difference, too. But it takes organization like you to pull us together and help us do that. So thank you for all of that work.
Kenneth Mendez, CEO & President of AAFA 28:06
Thank you and definitely your work here in, in making sure you amplify that is helpful for our community, so I really appreciate that.
Amanda Whitehouse, PhD 28:13
Thank you for listening today, and thank you to Kenny Mendez and AAFA for the work that you do to pull us together as a community and to create safer, more supportive environments for people living with asthma and allergic disease. Here are three simple ways you can get involved after listening today.
First, explore AAFA's educational resources and advocacy tools. They offer incredible information for people navigating asthma and allergies. You can find all of it by going to their website, aafa.org. From there, you'll find so many categories of programs, research and reports, advocacy work, ways to get involved, and ways to join the community that we heard about today. You'll also find a link to Kids with Food Allergies, where you can find the recipe database that we discussed.
Second, follow AAFA on social media to stay informed about advocacy efforts, legislation, awareness campaigns, and opportunities to take action within your own community. You can find them on Instagram and on Facebook at AAFA National. And again, that's A-A-F-A.
And third, we didn't even mention it today, but if you love podcasts, check out AAFA's podcast AAFANoon Chats, where they share conversations and updates about important topics impacting the allergy and asthma community. As always, you'll find links to all of those resources in the show notes. And if you found this episode meaningful, please consider sharing it with someone who could benefit from it, leaving a rating or review, or subscribing to the podcast to help it grow and reach more people who need to hear these conversations. Thanks for being here, and I will talk with you again next week The content of this podcast is for informational and educational purposes only, and is not a substitute for professional medical or mental health advice, diagnosis, or treatment. If you have any questions about your own medical experience or mental health needs, please consult a professional. I'm Dr. Amanda Whitehouse. Thanks for joining me. And until we chat again, remember don't feed the fear.