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Community Advocacy

As the leading celiac disease organization focused on accelerating discovery, development and access to new treatments and a cure, Beyond Celiac focuses our advocacy efforts on maximizing investment of public funds in research and public policy supporting these desired outcomes.

We also recognize that not everyone has access to the care and treatments they need. To indicate our dedication to ensuring this is resolved, we have signed on to the National Health Council’s Health Equity Consensus Statement: in short, we, as an organization representing and advocating for health care for all people regardless of race/ethnicity, gender identity, sexual orientation, disability status, or country of origin, etc., must commit to take action within our organizations and the communities we serve to reduce health inequities.

Our community has the power to drive change by encouraging our legislators to support initiatives that make it easier for people with celiac disease to safely consume gluten-free foods, beverages, medications and supplements AND to drive funding for celiac disease research.


How You Can Help

  • Watch this page for new initiatives that you can support.
  • Get a Beyond Celiac shirt to help spread awareness here!
  • Contact your Legislator here.

Current Initiatives

The ADINA Act

On June 21, 2023, the Allergen Disclosure In Non-food Articles Act (ADINA Act) was introduced to the United States House of Representatives. This bill would require drugs that contain any of the top 9 allergens or gluten to be labeled as such.

In the words of Nancy Ginter, our director of administration, “Ingredient transparency enables individuals to make informed choices when selecting medications. This information empowers them to manage their condition effectively and avoid unnecessary risks.”

We firmly endorse this guidance and encourage you to contact your representatives on this bill, H.R. 4263 / S. 2079.

Get a sample letter or script from Gluten-Free Watchdog

Read the full text of the bill

Learn more about our work on gluten in medications


Improve Alcohol Labels

Alcoholic beverages need better nutrition, ingredient, allergen, and alcohol content labeling! We joined 34 organizations and academics to call for more robust labels.

Read the full letter


Sign the Petition to Label Gluten As a Major Allergen

CALL TO ACTION: Submit Your Comments to the FDA to Support Citizen Petition to Require the Labeling of Gluten as a Major Food Allergen on All Food Products

10-year-old Jax Bari submitted a Citizen Petition to the FDA to require the labeling of Gluten on all food packages in the US to eliminate the gluten guessing game.

Labeling gluten, found in wheat, barley, and rye, as a major food allergen on all packaged foods in the US, like it is in more than 85 other countries around the world, will better protect 3.3 million Americans with celiac disease.

Labeling gluten will reduce the treatment burden, food insecurity and diet-related disease for millions of Americans with celiac disease.

Share your lived experience with the FDA! Visit www.celiacjourney.com/comments where you’ll find a sample letter, talking points and step by step instructions of what you need to do to submit comments to the FDA.


The Food Labeling Modernization Act of 2023 (FLMA)

UPDATE: This bill was reintroduced into the Senate in spring of 2023. The new bill numbers are H.R.2901/S.1289. There have been slight changes to sections of the bill unrelated to gluten. The gluten-free labeling provision remains the same, and we continue to support it.

PRIOR STATEMENT: In August 2021, Representatives Frank Pallone, Jr. (D-NJ) and Rosa DeLauro (D-CT), along with Senators Richard Blumenthal (D-CT), Sheldon Whitehouse (D-RI) and Ed Markey (D-MA) reintroduced the Food Labeling Modernization Act of 2021 (FLMA) to the House and the Senate. This bill is extremely significant for those living with celiac disease and non-celiac gluten sensitivity as it requires all manufacturers to disclose any gluten-containing grains on their labels. 

Beyond Celiac supports the Food Labeling Modernization Act (H.R 4917/S. 2594) and encourages everyone in our community to contact their representatives and senators to urge them to support it as well. 

Those wishing to get involved can copy and paste the following sample letter and share with your representatives. Adding personal stories and experiences is also encouraged:

We need your support for a new bill that requires that products disclose gluten-containing grains on labels.

Congressman Pallone and Senator Blumenthal have reintroduced an important Bill into the House and the Senate: The Food Labeling Modernization Act of 2021 (FLMA). The FLMA is a comprehensive effort to address numerous food labeling issues and includes amending FALPCA (Food Allergen Labeling and Consumer Protection Act) to require that food product packaging must disclose gluten-containing grains. 

This Bill amends FALPCA. If an FDA-regulated food product includes a gluten-containing grain, this must be disclosed in the ingredients list or separate Contains statement – just like for wheat and the other major allergens. This would be required regardless of whether the food was labeled gluten-free.

Thank you for your support of H.R 4917/S. 2594.


BENEFIT Act

The FDA has created and developed patient-focused drug development (PFDD) over recent years. Now, FDA will accept patient experience or preference data as a part of a new drug application. However, there is little clarity regarding how that data is used. The The Better Empowerment Now to Enhance Framework and Improve Treatments (BENEFIT) Act, H.R. 1092, would require that the FDA indicate whether it used the submitted data in the review process and if it had any impact. Providing this information to the public, and patient communities making significant investments in developing PFDD, creates transparency and will accelerate PFDD strategies more broadly.


NIH Clinical Trial Diversity Act

The bipartisan NIH Clinical Trial Diversity Act was developed with input from a variety of stakeholder groups including NIH, HHS, AdvaMed, PhRMA, BIO, ASCAN, and FasterCures. The bill is endorsed by No Health Without Mental Health, National Organization for Rare Diseases, Leukemia and Lymphoma Society, Faster Cures/Milken Institute, the Association of Black Cardiologists, the American Psychological Association, as well as Beyond Celiac. The bill is headed up by Congresswoman Robin Kelly.


Supporting the Congressional Celiac Disease Caucus

On August 24, 2021, the Congressional Celiac Disease Caucus was launched with the goal of advancing legislation that will support the needs of the celiac disease community and address the need for increased federal funding for celiac disease research.  Importantly, it will work to raise awareness of celiac disease across congressional districts. 

A congressional caucus is composed of a group of members of the United States Congress that meets to pursue common legislative objectives. Introduced by Congresswoman Betty McCollum (DFL-Minn.), this bi-partisan Congressional Celiac Disease Caucus will provide the impetus to address the needs of the celiac disease community directly. 

Along with Congresswoman McCollum, the inaugural members of this caucus are Representatives Jake Auchincloss (D-MA), Earl Blumenauer (D-OR), Matt Cartwright (D-PA), Madeleine Dean (D-PA), Brian Fitzpatrick (R-PA), Josh Gottheimer (D-NJ), Chrissy Houlahan (D-PA), John Joyce (R-PA), Tim Ryan (D-OH), Mary Gay Scanlon (D-PA), Glenn Thompson (R-PA), David Trone (D-MD), and Susan Wild (D-PA).

Our immediate goal is to increase the strength of this caucus by encouraging representatives to join the Congressional Celiac Disease Caucus. Please contact your Congresspeople asking them to join the Congressional Celiac Disease Caucus in order to make progress in addressing the needs of the 3 million Americans with celiac disease. 

Call or write to your Congresspeople and request that they join the Congressional Celiac Disease Caucus today!

Download a sample letter to send to your Representatives asking them to join the Congressional Celiac Disease Caucus in order to make progress in addressing the needs of the 3 million Americans with celiac disease.


RISE Act

The RISE Act would authorize approximately $25 billion in emergency relief for federal research agencies. This crucial funding will help prevent life-saving medical, public health, and scientific progress from becoming another of COVID-19’s victims.

Download a sample letter to send to your congressperson.


Other Legislation We Support

  • Fiscal Year 2023 Appropriations Bills Alongside more than 115 organizations, we signed onto Research!America’s organizational letter urging timely action on FY23 appropriations to meet the very real research funding needs before us. Our nation’s progress against health threats like celiac disease relies on the longstanding bipartisan commitment to medical research, and this year is no different. Read the letter.
  • 2024 Defense Appropriations Act We support the enactment of the fiscal year 2024 Defense Appropriations Act, to ensure full funding levels for the Defense Health Research Programs, including the Congressionally Directed Medical Research Programs (CDMRP). We collectively represent millions of American veterans, military retirees, military families, and civilians who benefit from the ongoing research funded by the CDMRP.
  • Creating an Office of Autoimmunity within NIH Alongside the National Coalition of Autoimmune Patient Groups, we call upon the Committee on Appropriations to pass a final appropriations bill that includes the National Institutes of Health will establish an Office of Autoimmunity within the Director’s Office.
  • DIVERSE Trials Act DIVERSE stands for Diversifying Investigations Via Equitable Research Studies for Everyone Trials Act. This bill would require activities that increase diversity in clinical trials and requires a study be done on data collection and data sharing during public health emergencies. S.2706
  • ENACT Act of 2021 ENACT stands for Equity in Neuroscience and Alzheimer’s Clinical Trials. This bill lays out requirements in order to increase the participation of underrepresented populations in research and clinical trials for Alzheimer’s disease and related dementias. H.R.3085 / S.1548

Contact your representatives and encourage them to support these legislative initiatives.

  1. Call, write, email, or send a message to your Senators and Congressional reps. Include a personal story.
  2. Set up district meetings as Senators are back home during recesses.
  3. Attend local events and talk to your Senators and their staff at the events urging them to cosponsor.


Past Advocacy Actions

April 2023

  • BEYOND CELIAC SIGNS LETTER IN SUPPORT OF SAFE STEP ACT 2021 (H.R. 2630 / S. 652)

Step therapy is a tool used by health plans to control spending on patient’s medications.  While step therapy can be an important tool to contain the costs of prescription drugs, in some  circumstances, it has negative impacts on patients, including delayed access to the most effective  treatment, severe side effects, and irreversible disease progression. Currently, when a physician  prescribes a particular drug treatment for a patient, the patient’s insurance company may require them  to try different medications and treatments before they can access the drug originally prescribed by  their physician. This protocol is known as “step therapy” or “fail first.” Step therapy protocols may  ignore a patient’s unique circumstances and medical history. That means patients may have to use  medications that previously failed to address their medical issue, or – due to their unique medical  conditions – could have dangerous side effects.

Aug 2022

On Apr 19, 2022, the The Food and Drug Administration (FDA) announced the draft guidance “Evaluating the Public Health Importance of Food Allergens Other Than the Major Food Allergens Listed in the Federal Food, Drug, and Cosmetic Act.” The guidance proposes that the FDA should only consider adding a food to the top 9 allergens when it elicits certain IgE-mediated immunologic reactions (among other criteria). This would prevent any petitions to add barley or rye to the top 9 list from moving forward.

We firmly oppose this guidance. Read our full response.

The commenting period has closed. Thanks to all of those who used our sample text to comment on the FDA website!


We Support the Gluten in Medications Bills

On December 11, 2019, Senator Richard Blumenthal [D-CT] introduced S.3021, to the Senate floor. This bill is meant to amend the Federal Food, Drug, and Cosmetic Act to require the label of a drug that is intended for human use and contains an ingredient that is derived directly or indirectly from a gluten-containing grain to identify each such ingredient, and for other purposes. It will also be known as the Gluten in Medicine Disclosure Act of 2019.

On April 3, 2019, Representative Tim Ryan [D-OH] introduced H.R. 2074, the Gluten in Medicine Disclosure Act of 2019 to the to the House of Energy and Commerce Committee’s Subcommittee on Health. It uses the same language as the Senate version of the bill.

On April 8, 2021, Representatives Tim Ryan (D-OH) and Steve Stivers (R-OH) reintroduced the Gluten in Medications Disclosure Act to the House floor. This legislation would require drug manufacturers to label medications’ ingredients, their source, and whether gluten is present. (Learn how to help get this bill passed here.) 

If passed, these bills would amend the Federal Food, Drug, and Cosmetic Act to require gluten be labeled in all medications.


How We’ve Made an Impact

Early in our history, Beyond Celiac stepped into the field of advocacy when we learned that there were not any celiac disease organizations actively involved in addressing the risk of potential gluten exposure through medications.

Beyond Celiac has expanded its advocacy initiatives and has focused on advocating for access to high quality healthcare, along with gluten-free food and drug safety standards by providing training and resources to the foodservice industry and regulatory agencies. 

Our current advocacy focuses include getting the Gluten in Medications bills passed as well as maximizing investment of public funds in research and public policy supporting these desired outcomes.

Below are some of our advocacy highlights:

Addressing Challenges for U.S. Gluten-Free College Students

In 2012, Beyond Celiac continued its work in the college and university setting by surveying nearly 1,000 U.S. gluten-free college students to strengthen our ability to advocate for improved training for college foodservice operator. This survey revealed a continued and pervasive lack of awareness and accommodation for students with gluten-related disorders.

More Details »

Involvement with the Digestive Disease National Coalition (DDNC)

Beyond Celiac is a member of the Digestive Disease National Coalition (DDNC), an advocacy organization focused on improving public policy related to digestive diseases and increasing public awareness of and government funding for digestive diseases.

More Details »

Participation in the U.S. Food and Drug Administration (FDA) Patient Representative Program

In 2012, Alice Bast, Beyond Celiac President and CEO and Kristin Voorhees, MA, Beyond Celiac Director of Healthcare Initiatives were chosen to serve as FDA Patient Representatives for celiac disease as part of FDA’s program to ensure that patients have a voice in its regulatory decision-making.

More Details »

Drug Information Association (DIA) Participation

Kristin Voorhees, MA, Beyond Celiac Director of Healthcare Initiatives was a 2013 Patient Advocate Fellow for the Drug Information Association (DIA).

More Details »

Education of Pharmacists and the Labeling of Gluten in Medications

Beyond Celiac works with the FDA and private organizations and corporations to meet our shared goal: safe pharmaceutical care for those who must maintain a medically necessary gluten-free diet.

More Details »

Gluten-Free Food Labeling

Beyond Celiac actively worked to secure regulations that define the requirements for food companies manufacturing packaged products that make a gluten-free label claim.

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Working with Celiac Centers of Excellence: Providing Data to Advance a Better Understanding of Celiac Disease

Beyond Celiac collects information and data from patients and their families about their concerns, attitudes and health outcomes, partnering with experts to advance a better understanding of the disease and how to manage it.

More Details »

Speaking Engagements and Industry Presentations

Beyond Celiac influences decision makers that impact all aspects of life to advance the interests of the celiac disease community.

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Beyond Celiac in National Media

Beyond Celiac engages in press outreach and fields press inquiries from national media and industry reporters looking for expert input.

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Expanding Access to Gluten-Free Food

Beyond Celiac signed on to a 2023 letter urging the expansion of access and accommodations for patients with celiac disease utilizing WIC. The final rule was published on April 18, 2024, and can be viewed on the government website

Ongoing Advocacy for Safe Medications

  • From 2011-2014, Beyond Celiac spearheaded a study with a grant from the FDA demonstrating that gluten in medications is a significant issue for the celiac disease community that needs to be addressed, and launched the GREAT Pharmacists training program. Read more about the study here.
  • In late 2017, the FDA released draft guidelines for labeling gluten in medications. While the efforts were a start, the action was not enough. The FDA accepted comments about the guidelines through February 12, 2018. Beyond Celiac officially responded and worked with the celiac disease community to get the most responses we could on the draft. Click here to read the letter we wrote to the FDA regarding their draft for our community members to send. We asked our community to send it in response during the open comment period. Over 800 comments were received.
  • On April 3, 2019, Representative Tim Ryan introduced the Gluten in Medicine Disclosure Act of 2019 to the congressional floor. If passed, the bill would amend the Federal Food, Drug, and Cosmetic Act to require gluten be labeled in all medications. (Learn how to help get this bill passed here.)
  • On December 11, 2019, Senator Richard Blumenthal introduced S.3021, to the Senate floor. This bill is meant to amend the Federal Food, Drug, and Cosmetic Act to require the label of a drug that is intended for human use and contains an ingredient that is derived directly or indirectly from a gluten-containing grain to identify each such ingredient, and for other purposes. It will also be known as the Gluten in Medicine Disclosure Act of 2019 and uses the same language as H.R. 2074, the bill Representative Tim Ryan [D-OH] introduced to the House in April. 
  • On April 8, 2021, Representatives Tim Ryan (D-OH) and Steve Stivers (R-OH) reintroduced the Gluten in Medications Disclosure Act to the House floor. This legislation would require drug manufacturers to label medications’ ingredients, their source, and whether gluten is present. (Learn how to help get this bill passed here.) 

More Details »


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