2020 IBD advocacy in review

Despite 2020 being a difficult year due to the COVID-19 pandemic, the Foundation saw some great advocacy successes. These could not have been achieved without the efforts of our advocacy volunteers from across the country as well as the leadership of our congressional champions, including the Congressional Crohn’s & Colitis Caucus Co-Chairs Representatives Carolyn Maloney (D-NY-12) and John Rutherford (R-FL-4). 

Ending surprise billing

Just this week, Congress took great strides to improve patient access to care by passing the No Surprises Act in its end of year legislative package. This bill protects patients from being on the hook for surprise medical bills after they pay in-network fees. A surprise bill happens when a patient is unexpectedly treated by an out-of-network provider and is billed the difference between the provider’s fees and what the patient’s insurance reimbursed. The No Surprises Act limits the patient cost-share in these situations to the in-network level for emergency care, and care provided in in-network facilities without the patient’s consent. The bill applies to air ambulances but not ground ambulances. Providers and insurers will have the option to arbitrate fee disputes to be settled by a third party. 

Throughout the year, the Foundation joined with several other patient organizations to urge Congress to end surprise medical billing via sign on letters to Congress and other efforts. We had 243 IBD volunteers email their legislators on this issue via our Action Center, and it was also discussed during Virtual Day on the Hill.

Securing federal medical research spending

The end of year omnibus package also included the fiscal year 2021 appropriations bills, and Congress continued to support IBD medical research. Specifically, the bill allocated:

• $1 million for the IBD epidemiology program at the Centers for Disease Control & Prevention, which is the same funding level as last year
• $42.9 billion for the National Institutes of Health, an increase of $1.25 billion
• Included ‘inflammatory bowel disease’ in the Department of Defense Peer-Reviewed Medical Research Program and funded the program at $370 million 

Just as we do every year, the Foundation worked with Congress on the appropriations process to ensure adequate funding for IBD medical research. This year, we supported the first-ever congressional sign on letter in the House of Representatives and we also continued to support a Senate sign on letter. Additionally, 341 Foundation volunteers emailed their legislators asking for robust funding for IBD medical research via our Action Center.

Removing barriers to colorectal cancer screening

In the end of year package, Congress also passed the Removing Barriers to Colorectal Cancer Screening Act. This bill, over time, removes costs previously associated with colorectal cancer preventative tests and procedures for Medicare patients. Over the last 10 years, the Foundation has consistently supported this bill by joining with patient and provider coalitions. In 2020, we joined coalition sign on letters to Congress urging passage of this bill. 

Advancing step therapy reform

We made immense progress in advancing step therapy reform bills on both the state and federal levels this year. Step therapy reform bills were introduced in Arizona, California, Massachusetts, and Pennsylvania, and will be reintroduced in 2021. At this time, over half of all states have passed step therapy reform legislation. 

In the U.S. Congress, step therapy reform legislation in both the House and Senate gained solid bipartisan support. The bills have 157 co-sponsors in the House, and 18 co-sponsors in the Senate. The congressional step therapy reform bills will also be reintroduced in 2021.

The Foundation participated as leaders in step therapy reform coalitions on both the state and federal levels. This issue was included in our state and federal lobby days, and we led organization sign on letters to decision-makers urging them to pass the bills. In total, 273 volunteers emailed their legislators from our Action Center and 16 volunteers conducted virtual meetings on step therapy reform this year.

Developing coronavirus resources

And of course, 2020 can’t be discussed without mentioning the coronavirus. Our advocacy team pulled together state-by-state relief measures on our coronavirus education webpage. We also sent letters to 18 governors urging them to support access to restrooms for those with medical needs as establishments reopen. This correspondence came in handy when New York threatened to close restaurant restrooms, even for their take-out and outdoor diners. 

Virtualizing our advocacy programs

Like everyone, the Foundation adapted our advocacy program for the virtual environment. For the first time ever, we hosted a virtual Day on the Hill, and we’re excited to share that 127 advocates participated in our virtual meetings and 1,182 signed our World IBD Day petition supporting the passage of step therapy reform. We also hosted virtual state lobby days in California, Massachusetts, and Pennsylvania. Later in the year, we supported volunteers in conducting Summer Advocacy Calls during the usual congressional August in-district work period. The toolkits developed for these initiatives will continue to help volunteers advocate virtually, and can be accessed on our Advocacy Tools & Resources webpage. 

The 117th Congress begins in January, and state legislatures will also begin anew. We will work towards reintroducing our legislative efforts, and we will engage returning and new legislators to garner their support. We hope you will join us in 2021 to continue to push for policies that will support finding cures and improving the quality of life for those affected by IBD. You can receive more updates like this one, as well as alerts on when and how to take action, by signing up for the Advocacy Network. We look forward to another great year of advocacy. 

Sarah Buchanan is the Foundation's director of advocacy.