Advocacy Priorities

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

Protect Patients from Insurer Discrimination and Bolster Patient Protections

As healthcare continues to be debated, it is critical that basic patient protections are maintained, including the prohibition on discrimination against pre-existing conditions. Further, more must be done to support timely access to the care that patients need. 

Read more about our position on discrimination against pre-existing conditions in our Healthcare Reform position statement.

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 of the patient's provider-prescribed treatment. HR 2279, the Safe Step Act would strengthen access to care by providing exceptions for patients to skip step therapy protocols when the protocols are not medically appropriate.

Step therapy reform bills are also being considered by state legislatures, Click here for more information.

Limit Patient Out of Pocket Costs

The Patients' Access to Treatments Act, to be introduced in the U.S. House of Representatives, would make medications more affordable for patients by prohibiting higher cost-sharing for specialty medications, such as biologics, than for other prescription drugs in non-preferred tiers.

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 2501, 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.

Medical Research

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 million for the CDC IBD Epidemiology Program in Fiscal Year 2020 (FY20)

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 FY20

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 FY20

'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. 

Awareness

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 Representative Carolyn Maloney (D-NY-12).

See this list of Caucus members for more information. 

Support Restroom Access 

Many IBD patients worry about whether or not they will have access to a restroom when in public. Patients have been denied access to employee-only restrooms in times of emergency, which can lead to unnecessary, avoidable embarrassment.

The Foundation supports and empowers volunteers to be champions of state-based legislation that would allow access to employee-only restrooms in an emergency. See our resources on how you can pass the Restroom Access Act in your state and ensure its implementation.