Thank you for joining with thousands of other CCFA advocates across the nation who are helping us shape the policies and programs that impact people living with Inflammatory Bowel Disease (IBD).
Below are our advocacy priorities. Download our handouts here, and see more in the Advocacy Toolkit webpage:
We are asking the U.S. Congress to support the following:
Join the Congressional Crohn's and Colitis Caucus
The Congressional Crohn's and Colitis Caucus is a bi-partisan group of Members of Congress that work together to raise awareness of Inflammatory Bowel Diseases (IBD), support IBD medical research, and protect patient access to care. The Caucus is led in the House by Representative Nita Lowey (D-NY-17).
Access to Care
Protect chronic disease patients from insurer discrimination and improve the quality of coverage
As Congress considers changes to the Affordable Care Act (ACA), 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 patients' access to the care they need. For additional information, see the resources on the Be An Advocate webpage.
Co-sponsor HR 2077, Restoring the Patient’s Voice Act
Co-sponsor HR 2999, Patients' Access to Treatments Act
This legislation would enable patients to better afford the medications they need by prohibiting higher cost-sharing for specialty medications than for other prescription drugs in non-preferred tiers.
Provide $1 million for the CDC IBD Epidemiology Program in FY18
The Centers for Disease Control and Prevention (CDC) should complement the existing IBD Epidemiology Study wtih research on IBD's impact on minoirty 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 taret interventions.
Provide $36 billion for NIH and $2.16 billion for NIDDK in FY18
Hope for more effective treatments and a cure for IBD lies in biomedical research. CCFA joins other stakeholders in recommending $36 billion for the National Institutes of Health NIH) in FY18 as well as an increase for the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), the lead institute for IBD research at NIH.
Include 'Inflammatory Bowel Diseases' in the DOD Peer-Reviewed Medical Research Program in FY18
'Inflammatory Bowel Diseases' has been included in the Department of Defense (DOD) Peer-Reviewed Medical Research Program since FY08, and IBD researchers consistently compete successfully. IBD is associated with service in the Persian Gulf and the prevalence of IBD is increasing among veterans.
Biological therapies have been revolutionary for IBD patients by helping to prevent surgery and hospitalization while improving quality of life for these patients. Access to biological therapies, is therefore, a crucial component of medical therapy for our patients. The entrance of biosimilars into the markets would create additional flexibility for patients and providers. Currently, the Food and Drug Administration (FDA) is developing a regulatory approval pathway for biosimilars, and states are updating older state laws on drug substitution. As policies on biosimilars are crafted, CCFA wants to ensure drug safety, limit the risk of immunogenicity, and create transparency between the patient, provider, and payer around the decisions related to switching to a biosimilar. For additional information, download CCFA's position statement on biosimilars, endorsed by NASPGHAN.
- CCFA's written submission to FDA RE Biologics License Application 125544 - February 9, 2016