The Crohn’s & Colitis Foundation advocates on behalf of IBD patients, caregivers, and healthcare providers.
Consistent with our mission, we are asking Congress, the Administration, and state legislatures to support medical research to find cures for IBD, and to improve patient access to care. Below are our legislative priorities. Where appropriate, we indicate federal bills, and provide links where you can learn more about state-based legislation. Speak out to help improve research funding and patient care nationwide. Together, we can make a difference.
Access to Care
Reform Step Therapy
Step therapy, also known as fail first, is a practice used by health insurers requiring a patient to try and fail on one or more insurer-preferred medications before approving coverage for the treatment selected by the patient and their provider. S464/HR 2163, the Safe Step Act would strengthen access to care by requiring employer health plans to establish a clear and expedient exceptions process including circumstances in which patients should be approved to skip step therapy protocols when the protocols are medically inappropriate.
Similar step therapy reform bills are also under consideration by state legislatures, Click here for more information.
Ensure Coverage for Medical Nutrition
Medical nutrition is an important treatment option for patients with Crohn’s disease and ulcerative colitis that is often not covered by insurance. HR 3783/S 2013, the Medical Nutrition Equity Act would ensure that private insurance, Medicaid, CHIP, Medicare, and the Federal Employees Health Benefits Program cover medically necessary foods if they are prescribed by the patient's provider.
We need robust medical research funding to achieve our mission of finding cures for IBD. That’s why we work to make sure that IBD has adequate funding in the annual federal budget.
Provide $1.5 million for the CDC IBD Epidemiology Program in Fiscal Year 2023 (FY23)
The Centers for Disease Control and Prevention (CDC) is studying the impact of IBD on minority and underserved populations. The study's goal is to learn more about the causes, variations, and other factors of IBD in order to improve care and target interventions.
Increase funding for NIH and NIDDK in FY23
Hope for more effective treatments and cures for IBD lies in biomedical research. The Foundation joins other stakeholders in recommending an increase in funding for the National Institutes of Health (NIH) as well as the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), the lead institute for IBD research at NIH.
Include “inflammatory bowel disease” in the DOD Peer-Reviewed Medical Research Program in FY23
'Inflammatory bowel disease' has been included in the Department of Defense (DOD) Peer-Reviewed Medical Research Program since FY08, and IBD researchers consistently compete for funding successfully. IBD is associated with service in the Persian Gulf and the prevalence of IBD is increasing among veterans.
Increase the Membership of the Congressional Crohn's & Colitis Caucus
The Congressional Crohn's & Colitis Caucus is a bipartisan group of members in the U.S. House of Representatives that works together to raise awareness of IBD, support IBD medical research, and protect patient access to care. The Caucus is led by Representatives Carolyn Maloney (D-NY-12) and John Rutherford (R-FL-4).
See this list of Caucus members for more information.
Support Restroom Access
Many IBD patients worry about whether they will have access to a restroom when in public. Patients have been denied access business restroom in times of emergency, which can lead to unnecessary, avoidable embarrassment.
Since 2005, the Crohn’s & Colitis Foundation has supported patient advocacy to promote legislation at the state level, which has led to the passage of Restroom Access Act (also known as Ally’s Law) in 18 states. After many years of working on this issue, we find that awareness of those laws is very low, and compliance by businesses is still a major issue for patients.
In partnership with other nonprofits, the Foundation is now calling on stakeholders in the public and private sectors to recognize the issue of restroom access as a basic human need and permit public access to restrooms wherever possible. We believe that businesses and governments can help solve this problem with a simple act of human kindness by opening their bathrooms.
The Crohn’s & Colitis Foundation has launched a new restroom app called, “We Can’t Wait.” Learn more about the app.
Find out more about advocating for Restroom Access in your state.