Support IBD-Friendly Legislation
Published: December 7, 2022
Public policy advocacy has been central to the Foundation’s mission since its founding over five decades ago. Our cofounder, Suzanne Rosenthal, was passionate about creating legislative change for patients like her living with Crohn’s disease or ulcerative colitis. She was known for walking the halls of Congress, drumming up support for critical pieces of legislation AND reminding legislators to get a colonoscopy.
Suzanne was instrumental in helping increase the National Institutes of Health and National Institute for Diabetes, Digestive, and Kidney Diseases inflammatory bowel disease (IBD) research portfolio. She co-founded the Digestive Disease National Coalition with her husband Irwin. She was also recognized for her advocacy work on behalf of patients by Congress following her passing in 2013.
Suzanne is proof that one person’s efforts can truly create change that impacts the lives of many. And that’s why we are so passionate about getting the IBD community involved in our advocacy initiatives on the state and federal level.
In the past year, IBD advocates have made a profound impact across the country. Thanks to the hard work of our volunteers, we saw several key state legislative victories:
• Step therapy reform bills passed in Pennsylvania, Massachusetts, and Tennessee.
• A bill passed in California that requires prescription medication cost information to be available at the point-of-care (in the doctor’s office).
On the federal level, we continued to build momentum around support for the Safe Step Act, Medical Nutrition Equity Act, and IBD medical research funding:
• We secured 191 House cosponsors and 35 Senate cosponsors of the Safe Step Act (HR2163/S464).
• We also secured a commitment that the House of Representatives will hold a hearing on the Safe Step Act in the next Congress – which is important movement toward getting the bill passed.
• We secured 105 House co-sponsors in the House and 24 Senate cosponsors of the Medical Nutrition Equity Act (HR 3783/S 2013)
• We helped lead efforts to support legislation fostering increased diversity in clinical research.
• We also obtained significant Congressional support for the IBD research and outreach through the Centers for Disease Control and Prevention, the National Institutes of Health, and the Food and Drug Administration.
These important milestones couldn’t have been achieved without our advocacy volunteers, who sent over 6,000 messages to Congress this year. During our first-ever Advocacy Action Week, over 3,000 messages were sent to Congress to urge support of IBD-related legislation.
We have made a lot of progress toward improving access to care for IBD patients but there’s still more work to do. Your voice is important, and your story can make a huge difference, like Suzanne’s did. You can help support our IBD legislative priorities in 2023 by joining our Advocacy Network and participating in monthly action alerts, virtual lobby days, and other days of action. Click here to sign up today.
Rebecca Kaplan is the Foundation's Associate Director of Corporate Communications and the caregiver of a Crohn’s disease patient.