Season 2 Episode 1: Advocacy in Celiac Disease

Vanessa Weisbrod:

Welcome to Season Two of Raising Celiac, a podcast dedicated to raising the standard of education, awareness, and research on celiac disease and related autoimmune conditions. We have some exciting changes for this season. The Boston Children’s Hospital Celiac Program has teamed up with the Celiac Disease Foundation to expand the reach of our educational podcast. Our goal is simple, to provide education to as many health providers and patient families as possible.

I’m Vanessa Weisbrod, and I’ve started a new role as the chief education and community engagement officer at the Celiac Disease Foundation. In every episode, you’ll also hear from Janice Arnold, an incredible social worker at Boston Children’s Hospital, who is the voice of our patient stories. Each month on the podcast, we will invite leading experts to dive into a hot topic related to celiac disease and look at how it impacts a patient family, the latest research, and offer suggestions for health providers to manage these complex cases.

Every episode of the Raising Celiac Podcast is accredited by the Boston Children’s Hospital Continuing Education Department for physicians, nurses, social workers, dieticians, and psychologists. To claim your credits for listening to today’s episode, please visit dme.childrenshospital.org/raisingceliac. We’ll also drop that link into the show notes. Thank you to the Global Autoimmune Institute and the Celiac Disease Foundation for making this podcast possible. Now, let’s get started with this month’s Raising Celiac patient story.

Janice Arnold:

For the past 15 years, Elena has been a devoted teacher known for her love of literature and dedication to her students. She had a completely normal childhood with no notable health concerns. She met her husband while in college in Wisconsin and has two healthy children. But just after her 37th birthday, her life took an unexpected turn when she began experiencing persistent health issues that left her puzzled and exhausted. It all began with unexplained fatigue, digestive issues, and a constant feeling of being unwell.

Initially, she attributed it to stress from work. But as the symptoms persisted, she knew something was amiss. Elena’s journey to a diagnosis was a winding road of doctor visits, tests, and uncertainties. Though it was only four months, it felt like four years of feeling unwell. Finally, after multiple consultations with her primary care doctor and a referral to a gastroenterologist, she received the life-changing news. She had celiac disease.

Vanessa Weisbrod:

Getting a celiac diagnosis isn’t always easy, and it doesn’t always happen on the first trip to the doctor. Because there are so many symptoms of celiac disease that often mimic other conditions, it can take some time. As awareness of celiac disease grows, the time to diagnosis is going down, but there is still more work to do.

Janice Arnold:

Elena found herself overwhelmed with the celiac diagnosis. Adapting to a gluten-free lifestyle while managing the demands of teaching proved to be a significant challenge. She had to rethink her daily routines, from lesson planning and meal planning to navigating the school cafeteria where lunch was provided free of charge to staff members. Despite the hurdles, Elena’s experience ignited a newfound passion.

Recognizing the lack of awareness about celiac disease in her school community, she decided to become an advocate. She started by sharing her personal story during a staff meeting explaining the impact of celiac disease on her daily life. She organized gluten-free awareness activities like hosting a fully gluten-free food table at every school festival. At her school’s festival of cultures, instead of her traditional Irish table, her culture was celiac disease.

Elena collaborated with the school cafeteria to provide gluten-free options, which helped more than a dozen other students and two other faculty members at the school who also had celiac disease. And she started integrating lessons about celiac disease and other food intolerances into her teaching curriculum.

Vanessa Weisbrod:

Advocacy is crucial in the celiac disease community. Advocacy efforts help raise awareness about celiac disease among the public, healthcare professionals, and policymakers. Increased awareness leads to better understanding, early diagnosis, and improved management of the condition. Advocacy plays a significant role in ensuring that people with celiac disease have access to necessary resources, including gluten-free food options, educational materials, and support networks.

Advocacy can influence policymakers to direct more funds to celiac disease research. Increased research funding support studies aimed at better understanding the disease, developing new treatments, and improving the quality of life for patients with celiac. And advocacy efforts can contribute to changes in government policies, such as gluten-free food labeling regulations and food safety standards. These changes are essential for ensuring the safety and well-being of people with celiac disease in all aspects of their lives.

Janice Arnold:

Elena’s efforts extended beyond the school walls. She reached out to local health organizations, participated in community events, and even spoke to her primary care doctor about how she could educate other physicians in the area about celiac disease so others might get a quicker diagnosis. Together, they presented a lunch and learn to the other practitioners in the practice. For Elena, this was just the start. She wanted to educate more doctors and make the community better for everyone with celiac disease.

Vanessa Weisbrod:

Advocacy efforts can lead to the development of legislation and regulations that protect the rights and well-being of people with celiac disease. This includes advocating for accommodations in schools, workplaces, and public spaces to ensure a safe and inclusive environment. Advocacy can also greatly impact research and disease understanding when it leads to increased funding for scientists.

But how can patients like Elena and doctors be involved in advocacy efforts in a productive way? Should everyone start calling their members of Congress, or are their coordinated national efforts to join? We’ll discuss this and more on today’s episode of Raising Celiac. Today, we talk about advocacy in the celiac disease community with Marilyn Geller, the chief executive officer of the Celiac Disease Foundation.

Marilyn is the primary spokesperson for the patient and caregiver perspectives on celiac disease at North America, speaking at numerous domestic and international conferences, and most importantly, testifying before the House Committee on Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies.

Under her leadership, the Celiac Disease Foundation secured annual appropriations language directing the NIH to devote sufficient focused research funding to the study of celiac disease for the first time ever at $9 million. Also for the first time ever, the Department of Defense is now dedicating highly coveted research dollars to celiac disease. Welcome, Marilyn, to Raising Celiac.

Marilyn Geller:

Hello, Vanessa, and thank you for inviting me here.

Vanessa Weisbrod:

So let’s start with how you got to the Celiac Disease Foundation. Tell our listeners your story.

Marilyn Geller:

Well, my story began in 2008 where my son, who was 15 years old, was diagnosed with celiac disease. He actually had been ill from birth. We had seen every specialist there was to see and we had no answers. And he was scheduled for a sinus surgery because they had determined that the reason why he could no longer get out of bed and had such GI issues could possibly be from the sinus drip that was going down the back of his throat because of his extensive allergies.

So they were going to do sinus surgery. And by this time, I can’t even enumerate the number of visits that we had had over his lifetime to try to figure out what was wrong with him. So they ordered a preoperative blood panel. And I said to his pediatrician out of desperation at that time, “Order everything and anything you can possibly think of because we know that our child is really ill and we really don’t believe it’s because of allergies.” And so she did, and she gave me a call.

And again, this is 2008 and we had never heard of celiac disease. And she said that he tested positive for celiac disease, that his antibodies were off the chart. I have to tell you, having never heard the word celiac before, I’m thinking the animal, the seal at the zoo. And then she said that we cannot eat gluten, and I’m thinking gluten, some chemical compound. We found ourself in the same situation that so many other parents do. And I’ll have to say that on top of this, my husband is a physician and he had not diagnosed our own son.

So at that point, she had said because his antibodies were off the chart that he actually did not need a biopsy, they were that high, which is not the recommended way to go, but I’ll just tell you our story. And the 15-year-old son who was an athlete and played football and soccer and tennis said, “If you are telling me that for the rest of my life I’m never going to be able to eat my favorite foods, pizza, pasta, burritos, I want a biopsy.” And of course, it came back positive. So at that point in time, it was everything that I could do to figure out how to feed him gluten-free foods.

In 2008, it was a very, very different market. And so I spent the first year really trying to make bread in the bread maker, cook our gluten-free food, and I was really just consumed with that. But about a year later, I realized that our child has a serious disease, a serious genetic autoimmune disease. Why are we not involved as a family with a foundation, with fundraising? And so we were very fortunate to find the Celiac Disease Foundation. I was actually invited to join the board of directors.

I served as the treasurer for a couple of years. And when Elaine Monarch, the founder, retired, there was an opportunity to step into her position. The board asked if I would consider it, and I did. And so 12 years later, here we are. My son is now 30. I will say it has still been a bumpy path from diagnosis to today, but that’s what keeps me going. Because for all of the parents, all of the children, the grandparents, our collective goal is to make sure that we get treatments and eventually a cure for this disease.

Vanessa Weisbrod:

Absolutely. It’s such an inspiring story to see how you used your son’s struggle with celiac disease and are now giving back in such a big way. So can you talk to our listeners about the historical landscape of advocacy and research funding for celiac disease at the federal level?

Marilyn Geller:

To me, it’s a very interesting story. In 2004, the Celiac Disease Foundation was instrumental in helping convene the Consensus Conference on Celiac Disease at NIH. And up until 2004, apparently our country believed that celiac disease was a rare pediatric disease that you could grow out of.

And Elaine Monarch served on the steering committee with other names, other KOLs in our field, key opinion leaders, and we were able to collectively convince NIH that this was not that rare pediatric disease, but that it was really one of the world’s most common genetic autoimmune disorders affecting both adults and children and you certainly can’t grow out of it. So from that meeting, led a 10-year effort to get the gluten-free labeling rule that the FDA put into place, voluntary labeling rule, in 2014.

So in 2019, I was invited to speak before Congress for the House Appropriations Subcommittee as to why there should be celiac disease research funding. Very, very fortunate that in our testimony, the chair of the committee, Rosa DeLauro, when I finished my testimony, said, “I have a colleague here in Congress and I’ve watched her all of these years be so careful in what she eats. She has celiac disease, but I never understood until now that this was really a serious disease.” And because of that, we were introduced to Betty McCollum, who is now the chair of the House Celiac Disease Caucus.

And through her efforts, we’re able to establish the caucus and be introduced to NIH. And since 2020, through the work of our patient advocates and the House Celiac Disease Caucus and all of the medical and research community, we’ve come together with Congress to assure that there’s been funding at NIH. So every year we work to renew this. Now, two years ago, we actually put in a request to the Department of Defense to find out if we could get celiac research dollars in what they call the Congressional Directed Medical Research Program.

And after only two years of asking, celiac disease was entered into the topic area just in 2023. And I’m very proud to say that in addition to the $9 million a year that’s been awarded through NIH since 2020, this year we have $7 million additional in grants through the Department of Defense.

Vanessa Weisbrod:

That’s so amazing. It’s really fun to hear this history. So I remember that NIH Consensus Conference in 2004. I was actually there with another hat on though. I was working as a reporter for Cox Newspapers and was assigned from their healthcare desk to cover that conference. And that was the day that I learned about celiac being a genetic condition.

My mom was diagnosed in the ’90s and her doctor never told her to have the rest of our family tested. So it was a long time later that I got tested in 2004, but it was because of that meeting that I learned about the genetic link and got myself tested. So it’s good to hear that history and how it all came to be. I want to hear more about the celiac caucus. Can you tell us how you were able to make this happen?

Marilyn Geller:

Certainly. So again, sometimes it’s better to be lucky, and we were certainly very, very lucky that Rosa DeLauro was compelled to speak with her colleague Betty McCollum about my testimony. So one of the things that happens in Washington, DC is you need to retain a respected advocacy firm to make certain that your disease voice is heard on the Hill. And we were very, very fortunate to be introduced to a firm called Baker Donelson, who has been representing celiac disease now again since 2020.

And we were also able to create a patient advocacy program where we’ve done in-person training and online training. And for those of you who are interested in the online training program, you can find it at iadvocate.celiac.org. But between the patient advocates that come from this program and the work with Baker Donelson, we were able to help rally other House representatives to join the caucus under Betty McCollum’s leadership.

Vanessa Weisbrod:

How is the level of funding for celiac research evolved over the years at NIH and DOD and what factors have contributed to those changes?

Marilyn Geller:

So as I mentioned, since 2020, NIH has allocated about $9 million a year for celiac disease research. And then again, DOD, this first year, $7 million. The factors are having researchers submit quality applications to both institutions. They go through rigorous review. And so it’s very, very important that not only is there a number of projects to choose from, but that the projects be well-supported in the institutions and have goals that really align with what the celiac disease community wants.

So in order to grow the funding, we just have to make certain that we submit more quality applications with, again, projects that resonate with our community.

Vanessa Weisbrod:

So to all of our researchers and scientists out there listening, submit great projects so that we can keep getting those dollars up. So how do you continue to increase the amount of funding allocated for celiac?

Marilyn Geller:

Well, in addition to the funding available at the federal level, we, the Celiac Disease Foundation, sponsor research grants directly. So from our donors, from our work in the celiac community, through our patient recruitment for Biopharma, we’re able to take those dollars and put them towards research grants.

So we now sponsor a number of research grants to put new investigators into the pipeline, to provide student mentored experiences during the summer, and looking forward to announcing next month a couple of more grants that will be in the health equity area and pilot projects in nutrition and education.

Vanessa Weisbrod:

That’s wonderful. Can you talk to us about the Celiac Disease Foundation’s collaborations with NIH and DOD?

Marilyn Geller:

So part of working with NIH is to make certain that the goals of the celiac community are heard when researchers are putting together their applications and they’re being selected. So beginning with the discussions at NIH that happened after my testimony, the next thing that happened is we sponsored a workshop with the organization, a medical society that I highly recommend that everyone listening to today join, the Society for the Study of Celiac Disease.

And we were able to bring NIH leadership to that workshop to really understand the goals of the celiac disease medical community, as well as the patient voice. From there, the Autoimmune Coordinating Committee at NIH invited celiac disease researchers and myself to again testify before the Autoimmune Disease Coordinating Committee, which does look at all of the different institutes at NIH that touch on autoimmune disease.

From there, they created a model where we could have a joint workshop, again, across the NIH institutes that would be involved to come up with a plan of what funding would look like. It’s become such a successful model that this is being utilized by both the Autoimmune Disease Coordinating Committee and NIH itself to look at how you can take diseases that have such great impact. We have about 1% of our country affected by celiac disease, again, making it a really common disease, and how those common diseases can receive funding.

Out of that has also come the NIH’s desire to establish an office of the OADR, which is going to be a coordinating office that will be directly responsible for coordinating all autoimmune funding across NIH, but again, based on the model that we were able to help put in place for celiac disease.

Vanessa Weisbrod:

So I know that you’re only in the early days of this and funding is only a few years old, but how do you envision the future of federal funding for celiac disease research, and what areas do you believe require increased attention and support?

Marilyn Geller:

Well, across the board for celiac disease, I think we would all say all of it. So there’s definitely folks looking at prevention. What could that look like? Certainly diagnosis, creating better diagnostic tools. We have research out there that is actually looking at being able to do a blood test without having to be consuming gluten for a long period of time to make the blood test work. Even the effort of drying the blood and mixing the blood with gluten ex vivo to determine if somebody has celiac disease.

So it’s certainly some very interesting things that can be done in diagnostics. And really important with those diagnostics because if we’re going to have celiac disease drugs in the future, we need to be able to test that they’re working. The other piece, of course, is disease management, how are we going to take care of people today, and then a cure, which I guess prevention could be a cure.

Vanessa Weisbrod:

Absolutely. So how does advocacy play a role in influencing federal funding decisions for celiac research? Do you have any success stories that you could share?

Marilyn Geller:

Well, I mean, certainly if we look at the fact that through our relationship with the Celiac Disease Caucus and the patient advocates who have taken the time to make personal appeals, either in their local districts with their representatives or at Washington, DC, but certainly rallying the troops to send emails. We have software at celiac.org where with a couple of simple clicks, you can fill out the template letters. It populates your name and your email and your address, and it directs it to the right people in the representative’s office to review it.

So between the thousands and thousands and thousands of email letters that have been sent by our advocates, these personal visits, the work of the caucus, all of those things really create the momentum on the Hill, and certainly in terms of the DOD funding to get that through in a couple of years to be added to the program when we’ve been told that there are other diseases who have been really struggling to be included for a decade plus. Again, just working on this focused effort with our advocates in the caucus.

Vanessa Weisbrod:

So we have a large audience of researchers, scientists, and medical providers who listen to this podcast. Any advice for how they can support advocacy efforts?

Marilyn Geller:

Well, I mean, certainly the iadvocate.celiac.org training program is fabulous for personal efforts. But of course, if anyone has a relationship with a representative or a senator or a special project, they can email us directly at advocacy@celiac.org. And then for those who come in contact with patients, certainly letting the patients know about the opportunity to advocate, again, starting with iadvocate.celiac.org.

Vanessa Weisbrod:

Great. So let’s shift gears and talk about patients like Elena. Obviously Elena had great motivation and passion for advocacy, but not everyone does. What are some simple ways that patients can join in with advocacy efforts?

Marilyn Geller:

Well, I keep saying join iadvocate.celiac.org, because what it really is is a series of video trainings so that it really explains to you, and then there’s links to resources and tools. And so you can self-serve on that. The simplest way is, again, on our website, there are email templates to support pieces of legislation. So if you go to celiac.org and you click on Get Involved, there will be a dropdown that talks about legislation.

So for instance, medical nutrition therapy for people with celiac disease under the Medicare program right now to receive dietician coverage for visits is legislation that we’re working on. You click the link. You put in your name and your address and your email. And you click the button again and your letter gets sent to Congress. And if you really want to, you can share again with a click of a button on your social media to encourage others to do it.

So to me, that’s the simplest way, click the links, and that email makes a dramatic impact. Because the more that the office hears about their constituents wanting these types of legislation, the more it happens.

Vanessa Weisbrod:

Absolutely. Can you talk to our listeners about current efforts to expand gluten-free labeling of food and medications?

Marilyn Geller:

All right, so I talked about the Medical Nutrition Therapy Act, but there is another act that is also on our website that you can click the button and encourage your congressperson to support, which is the Food Labeling Modernization Act. And what this does is it updates the front-of-package food labeling requirements. It requires updates to the ingredients list on packaged foods, and it makes the consumer friendly labeling view. So that when you go to look at your packaging, you can more readily tell if a product contains gluten in addition to the label of gluten-free.

So there’s that. The other thing that we have done is in terms of gluten and medication, we know that this is a concern of the celiac community, there is not an FDA guidance that has been implemented. There’s been a draft guidance that has been there for a number of years with comment, but right now no legislation regarding gluten in medicine. So what we have done is we have partnered with industry. We just announced our partnership with Mark Cuban Cost Plus Drug Company.

We’ve been working with Mark Cuban’s company for over a year to make sure that for our celiac population, they can have the consumer confidence for the drugs that they can get through Mark Cuban, that they’ll be able to be told, there’s an email line, there’s a telephone line, whether those drugs have gluten in them. So that’s another way that we’re trying to work not only with Congress and the federal agencies, but work with private industry to address our audience’s needs.

Vanessa Weisbrod:

Great. So there are lots of voices online and on social media talking about different hopes and dreams for advocacy. What is the best way for people to coordinate their requests for these federal agencies here a unified message?

Marilyn Geller:

Well, it keeps coming back to join iadvocate.celiac.org. One more time, iadvocate.celiac.org. Again, if that is too big a lift, you can go to get involved under celiac.org and you can click on the legislation and click those emails to support the legislation that’s of interest to you. Again, also so that you can know what new legislative opportunities come aboard, certainly on our website, on the homepage, celiac.org, you can sign up for our email updates. And then that’s really simple because it will just email to your inbox, “Here’s legislation to support.”

You click the link. It takes you directly to that piece of legislation. Again, you put in your name and your address, you click it, and you’re done. So again, iadvocate.celiac.org and use the celiac.org’s email templates for Congress. And of course, if you have a relationship that you’d like to strengthen with your congressperson or introduce to Celiac Disease Foundation, or if you have specific projects, please reach out to us at advocacy@celiac.org.

Vanessa Weisbrod:

And if for any reason someone did not get what the URL is, we’ll be sure to include it in the show notes. Before I let you go, Marilyn, let’s talk about the growing number of food insecure families with celiac disease. We know our healthcare providers, many who are listening today, are seeing them in their clinics and they need resources to help these patients treat their disease.

A number of these families are currently enrolled in the WIC program, but are struggling to find gluten-free products that are included. Can you tell our listeners about your work with the WIC program to improve access to gluten-free products?

Marilyn Geller:

Yes, thank you. So in addition to having our patient advocates send emails or meet individually with their representatives, we do work directly with the agencies. And so in the case of WIC, right now, currently, there are packaging and ingredients requirements that exclude gluten-free products like bread from the program. So for example, a loaf of bread has to be a certain weight and size. They have to contain whole wheat.

And if they don’t contain whole wheat, they can’t have added sugar and oil, which for those of us who eat gluten-free products unfortunately know that without the gluten, the sugar and the oil is what gives it the flavor. So based on that, the people who are enrolled in food subsidy programs are really struggling, as you said, to find gluten-free products, and particularly ones that are nutritious.

So in ’22, we were able to lead an expert group of 21 medical professional and nonprofit organizations in a letter that was addressed to the US Department of Agriculture to improve food safety for patients with celiac disease and who do participate in the special supplemental nutrition program for women, infants, and children, also known as WIC.

So the WIC program is designed to safeguard the health of low-income women, infants, and children up to age five who are nutrition risk by providing nutritious foods to supplement diets, information on healthy eating, and referrals to healthcare. So we recognized the agency for including naturally gluten-free products in the program, fruits, vegetables, proteins, but we really wanted to make sure that included in that were the products that we all need, bread, cereal, and those types of options.

And so again, that’s again how we can work directly with the agencies on behalf of the celiac community, and we regularly survey our celiac community to find out what the priorities are. And certainly food insecurity is first and foremost, particularly after the pandemic, on people’s minds.

Vanessa Weisbrod:

Absolutely. Well, Marilyn, this has been such an amazing discussion and it really highlights how there is so much room for advocacy engagement both from the public and from healthcare providers. Thank you so much for all of the wisdom you shared today. And now my favorite part of the podcast, let’s find out where Elena is today.

Janice Arnold:

Elena is still hard at work advocating for the celiac community. Her journey is a testament to the transformative power of advocacy. Her commitment not only improved her own life, but also positively impacted the lives of those around her. In her own words, Elena says, “I’ve witnessed a positive shift in understanding and support within my community.

However, raising awareness wasn’t without its challenges, mainly due to misconceptions about celiac disease. Overcoming these hurdles requires persistence and education. I’m dedicated to the cause and can’t wait to see what the future brings for us, perhaps a cure.”

Vanessa Weisbrod:

And now a word from the Global Autoimmune Institute.

Global Autoimmune Institute:

The Global Autoimmune Institute works to empower solutions in the diagnosis and treatment of autoimmune diseases through research, education, and awareness, while supporting multidisciplinary approaches to health. We are thrilled to support the production of this educational podcast.

Vanessa Weisbrod:

Thank you for listening to this episode of Raising Celiac. A special thanks to the generous contributions from the Global Autoimmune Institute to make this podcast possible. A reminder to all physicians, nurses, social workers, dieticians, and psychologists. To claim your continuing education credits for listening to today’s episode, please visit dme.childrenshospital.org/raisingceliac.

If you like what you heard, be sure to write a review, like and subscribe wherever you get your podcasts. For more information, check us out on social at @bostonchildrensceliac on TikTok, @childrensceliac on Twitter, or @celiackidsconnection on Instagram. Have a great month.