Caring for Crohn's & UC

Congress Commits Funding to Find a Cure for IBD

January 5, 2016 at 9:59 am roemottola Leave a comment

While a mention of the United States Congress is often met with an exacerbated sigh, we IBDers and caregivers have a reason to thank our Congressmen and women this new year. The week prior to Christmas, Congress gave us a gift by passing the Fiscal Year (FY) 2016 spending bill. The bill included $32 billion for the National Institutes of Health (NIH), which funds important medical research on a wide array of illnesses, including inflammatory bowel diseases. This is funding increase of $2 billion from the previous year represents a significant commitment by Congress to finding cures.

In the bill, Congress also supported the Inflammatory Bowel Diseases Epidemiology Study in the Centers for Disease Control and Prevention.

While this sounds all great on paper, I wasn’t sure what exactly this meant for patients like me. To answer my questions, I spoke with Sarah Buchanan, Director of Advocacy at the Crohn’s and Colitis Foundation of America, for more information. Here’s what I learned:

Caring for Crohn’s: Can you tell me about the Centers for Disease Control and Prevention’s Inflammatory Bowel Disease Epidemiology Study? What is the focus?

Sarah Buchanan: The CDC funds research that addresses important questions about the epidemiology and effective outcomes related to IBD, including quality of life and work productivity. Epidemiologic studies also focus on identifying psychosocial, economic, demographic, clinical, and biological elements associated with outcomes in IBD.

Through a competitively awarded cooperative agreement with CCFA, CDC also supports the Ocean State Crohn’s and Colitis Registry (OSCCAR) Study in Rhode Island, which links OSCCAR enrollees to the Crohn’s & Colitis Foundation of America Partners in IBD Research registry, and communicates important information back to patients affected by the disease and their providers to improve outcomes. The registry link also expands and enhances descriptions of the disease and outcomes.

Caring for Crohn’s: Is the goal of the CDC study to find a cure, or to find better way to manage IBD?

Sarah Buchanan: The goal is to better manage IBD. By understanding the epidemiology of IBD, we can effectively target interventions and inform best clinical practices. The study does this by:

• Gathering national prevalence and incidence data.
• Supporting population-based studies to describe the incidence, prevalence, demographic, and clinical characteristics of people with IBD, and to assess the impact of the disease and various clinical practices in managing IBD.
• Adapting and expanding current studies to capture socio-economic, racial, and geographic differences among the population.

photo credit: Washington Dc ~ United State Capitol ~ Historic Building via photopin (license)

Caring for Crohn’s: What was the CCFA’s role in securing this money?

Sarah Buchanan: CCFA and volunteers advocate Congress to provide funding on an annual basis for CDC’s IBD program. Advocacy includes contacting Members of Congress and providing justification for continued study of IBD epidemiology. CCFA works closely with the IBD Caucus, co-chaired by Congressman Ander Crenshaw (R-FL) and Congresswoman Nita Lowey (D-NY), and Senate champions to ensure support for the program.

Caring for Crohn’s: What does the CDC study mean for the everyday IBD patient and their families?

Sarah Buchanan: While research outcomes take time, the findings of this research will inform how patient characteristics and physician characteristics affect patient outcomes. This could lead to changes in practice to improve outcomes for patients with IBD.

The IBD Epidemiology Study is following up on 400 participants of the OSCARR study to develop descriptive and prescriptive models of disease, including:

• clinical predictors
• modifying factors
• disease outcomes

The study also addresses issues related to gender and sexuality, and fatigue and quality of life.

(Read the CDC’s report to Congress on the study for more information.)

Caring for Crohn’s: This is great. Now, how can we get involved in securing more money for research and for advancing CCFA’s advocacy program?

Sarah Buchanan:  Advocacy from patients and caregivers is critical for securing support for IBD research in Congress. Persons interested in advocating for the CDC medical research funding, as well as other federal research on IBD, have a number of options to participate in advocacy:

• Join the CCFA Advocacy Network listserv to receive email updates on advocacy and action alerts
• Participate in action alerts. Alerts provide instructions on how to contact your member of Congress and what to say to encourage them to support IBD medical research as well as patient access to care. Action alerts are posted online in the Action Center and are announced through CCFA newsletters, social media, and the Advocacy Network
• Join CCFA for the annual Day on the Hill in Washington, DC. CCFA provides training and coordinates meetings for participants with their legislative offices. This is a key opportunity for patients/caregivers/families to tell their story and explain why more research is needed on IBD. Registration will open in late January for the next Day on the Hill, scheduled for May 11 and 12, 2016.

Many thanks to Sarah Buchanan at CCFA for taking the time to chat with me and for her continuous work in securing funding for IBD studies. Like anything else, it is vitally important for all of us to get involved in this fight. We will get back what we put into it. If we want more visibility for IBD, we will have to work for it, and I think you’ll agree that it’s a worthwhile fight.

Please let me know if you have any questions in the comments section.

Entry filed under: IBD News, Legislation. Tags: CCFA, CDC.