Fight CRC is Engaging in Research Advocacy
As a patient advocacy organization, Fight Colorectal Cancer (Fight CRC) is actively engaged in disease-specific education and awareness. Fifteen years ago, before the term “patient centricity” was coined, our founder Nancy Roach passionately requested to be included within the research community as a patient voice for colorectal cancer (CRC) patients.
In 2015, we launched the research advocacy training program (called “RATS”), training survivors and caregivers to meaningfully engage in the research process. The curriculum covers cancer biology 101 and in-person academies at academic institutions. With over 25 RATS members in 15 states and two countries, our RATS are actively participating as advisors, grant reviewers and IRB members for local, state and national organizations including the National Institute of Health (NIH), the Department of Defense (DoD), and the Patient-Centered Outcomes Research Institute (PCORI). Our research advocates bridge the gap between the research and the patient perspectives.
Curating from a Patient's Viewpoint
In January 2017, Fight CRC’s research advocacy went a step further. We partnered with Dr. Tom Marsilje, a stage IV colorectal cancer survivor and scientist. He proposed the idea that patients could continue to be at the forefront of research advocacy by curating a clinical trials list specifically for patients with MSS colorectal cancer tumor types. Over the course of a year, Fight CRC launched the Late Stage MSS- CRC Trial Finder: A Curated List Powered by Patients in partnership with Flatiron, a New York-based health technology firm. The interactive, online tool allows patients to search for and print a manageable list of clinical trials specific to MSS-CRC with custom links and notes based on selected criteria. Tom first developed this list, curating it from a scientist and stage IV patient perspective. He passed in November 2017, but Fight CRC’s RATS program has continued to host, update and curate the trials, ensuring the tool is available for patients.
Convening the Experts
In 2016, colorectal cancer had a breakthrough for MSI-high patients. Working with a multidisciplinary group of thought leaders, Fight CRC began to explore the role of immunotherapy treatment options for CRC patients. This was new territory but Fight CRC saw the value in tackling this effort. During a resurgence of research efforts into immunotherapy for CRC, Fight CRC collaborated with the Cancer Research Institute (CRI) to publish a blueprint outlining what is needed to advance immunotherapies for colorectal cancer. In November 2017, “A Blueprint to Advance Colorectal Cancer Immunotherapies” was published in the journal Cancer Immunology Research (doi: 10.1158/2326-6066.CIR-17-0375).
The blueprint created a framework to guide research in identifying immunologic factors that may be regulated to improve immunotherapy for CRC patients. The blueprint described the need to incorporate biomarker testing into routine clinical guidelines, ensuring that MSI testing is conducted for each CRC patient, based on the premise that biomarker testing can match patients to the most efficacious treatments for their disease status. The immunotherapy blueprint was a huge success thanks to multi-institutional research efforts and is pivotal in directing CRC research and policy.
Colorectal Cancer Awareness Month
Online and in person, we are advocating for research funding. One Million Strong is Fight Colorectal Cancer’s awareness campaign uniting the over one million survivors of colorectal cancer and their loved ones to get behind a cure and prevent future cases.
This March, during Colorectal Cancer Awareness Month, will be the 12th year we’ve gone to the Hill for Call-on Congress. Our legislative priorities in 2018 surrounding federal funding of CRC research include:
- Increase funding for the National Institutes of Health to at least $38 billion, an increase of $2 billion above last year, including 21st Century Cures Act funding and $6 billion for the National Cancer Institute for 2019. From 2011 to 2015, the NCI’s funding of CRC research dropped by more than 20%. We must make sure we support research efforts for the #2 cancer killer in the U.S.
- Fund the DoD PRCRP at $60 million for FY 2019 and ensure that colorectal cancer research continues to be included as eligible for funding under this program. The PRCRP funds high-risk, high-reward science that is not funded by NIH. From 2009 to 2015, the PRCRP funded over $14 million in colorectal cancer research.
We continue to honor Nancy Roach’s original intent in founding Fight CRC by working with researchers, training patients and advocating for funding to support medical research. As a member of Research!America, we hope to continue building our collaborative efforts with partners and coalitions across the country. For those who’d like to learn more, visit us at FightCRC.org.