What You Need to Know: Federal Disruptions Threaten Progress in IBD
Federal funding disruptions are more than numbers on a page—they represent a critical turning point that could stall life-changing IBD research, erase years of scientific progress, and diminish hope for patients and families in need of new treatments. Continued uncertainty around proposed funding changes carries serious consequences for those living with Crohn’s disease and ulcerative colitis. [i]
The Impact on Medical Research
Changes in support for agencies like the National Institutes of Health (NIH) can slow down research, delay important studies, and limit new ideas. When funding is cut or uncertain, labs may reduce their work, research jobs can be lost, and new discoveries—especially for diseases like IBD—may be delayed or never finished. Steady funding is needed to keep progress going, improve patient care, and help find cures. [ii]
Surveys highlight the severity of recent NIH funding cuts. The Foundation's survey found:
- 42% of federally funded IBD researchers reported negative impacts from administrative changes.
- 62% expressed concern about continuing their work.
- Many researchers are now seeking non-government funding.
- Other countries are actively recruiting U.S. scientists.
The American Association for Cancer Research (AACR) reported:
- 45% of researchers lost access to fellowships.
- 55% saw colleagues leave the field.
- 25% experienced delays or cancellations of clinical trials.
These disruptions directly harm patients and families by halting clinical trials and delaying new therapies.[iii]
What You Can Do to Help
The disruptions to federal funding means fewer new treatments on the horizon, less support for ongoing care, and a slower path to cures for chronic diseases like Crohn’s disease and ulcerative colitis. For many, it means more years of pain and suffering. >But we’re not giving up.
You can make a difference in the fight:
Join Our Advocacy Network: Help us urge Congress to protect federal funding for IBD research. Your voice matters- contact your representatives today.
Make a Donation: Your tax-deductible gift to the Crohn’s & Colitis Foundation directly supports critical research and patient programs.
Spread the Word: Share this information on social media and within your community to raise awareness about the urgent need for research funding.
Together, we can protect the future of IBD research and ensure that patients continue to receive the care and hope they deserve. Please check this page regularly for updates—your engagement is more critical now than ever before.
- Empowering Researchers: Support and Resources from the Foundation
- We provided free access to our IBD Plexus database for a number of academic researchers to help accelerate their projects.
- We increased our flagship research awards by 13%. We also provided a comprehensive, consolidated list of IBD funding sources from the Foundation and other organizations for researchers.
- We shortened our Foundation grant application timelines to get researchers the support they need faster.
- Access To Care at Risk
Millions of Americans—including many living with Crohn’s disease and ulcerative colitis—will be affected by recent changes to federal health insurance programs like Medicaid and the Affordable Care Act (ACA), as a result of legislation passed by Congress. These changes mean that people with chronic illnesses who rely on these programs for diagnosis and ongoing treatment may lose access to essential care and medications. As a result, thousands of IBD patients could face higher medical costs, delays in care, and a greater risk of complications, all of which can seriously impact their health and quality of life. Over the next decade, it’s expected that about 17 million more Americans will become uninsured, with most of these losses affecting Medicaid recipients. [iv]Research shows that patients with Medicaid have much better access to care and preventive services than the uninsured.[v] For IBD patients, early diagnosis and timely treatment are key to avoiding complications and hospitalizations, making Medicaid coverage especially important. Starting in late 2026, new paperwork requirements are expected to cause many people to lose their Medicaid coverage, while the majority of ACA enrollees have seen their premiums increase dramatically, which has caused many people to drop their coverage. Additionally, those who remain on Medicaid may experience higher out-of-pocket costs for certain visits, including specialist appointments.
Recommended Actions
- Many people don’t realize their state health plan is actually Medicaid, just under a different name. If you’re unsure, ask your healthcare provider or look up your state’s Medicaid program online to confirm your coverage.
- If you or a loved one has health insurance through the Affordable Care Act, remember that starting this year automatic reenrollment is no longer available. Each year, you’ll need to re-verify your eligibility and manually reenroll during the open enrollment period, which will run November 1 – December 15.
- Court Challenges Endanger 504 Accommodations for IBD in School and Work
Challenges to 504 plans in courts put critical school accommodations for IBD patients—and similar protections for workers—in jeopardy. If these protections are weakened or eliminated, students with IBD could lose access to individualized support such as flexible schedules, bathroom passes, and modified assignments, making it harder to keep up academically while managing their disease. The erosion of 504 plan rights would create additional barriers for young people with IBD, threatening their educational success and overall well-being, and could also undermine reasonable accommodations in the workplace. [vi]
The Foundation is actively supporting volunteer advocates as they urge State Attorneys General to protect 504 plan accommodations. We are closely monitoring the ongoing court case and will keep our community informed of any major updates.
To make your voice heard, take action here: https://action.crohnscolitisfoundation.org/a/504-2025-sm
- References
[VI] https://www.ed.gov/media/document/ocr-factsheet-inflammatory-bowel-disease-108820.pdf
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