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People who are underrepresented in health care are generally likely to also be underrepresented in clinical research. Fight CRC works in step with the patient community to discover new ways to improve and extend lives by addressing issues like these.
Research is core to our mission as we work together with scientists, research advocates, and community leaders to improve outcomes, increase participation in clinical trials, and ensure communities of color are not left behind. Over the last decade, Fight CRC has worked to advance overall patient engagement in clinical trial design, awareness, and education within the colorectal cancer community.
Through our efforts, we recognize that clinical trials are arguably the most important step to transition research into the real world, providing benefits across disease states, and improving health outcomes throughout various populations.
COVID-19 has shined a light on the racial and ethnic disparities in our healthcare system that have existed for far too long. As an organization dedicated to the colorectal cancer community, Fight CRC has pledged to do more to not only identify the gaps, but also advocate for equal access to care. We hope you will join us.
Landscape of Health Disparities
Colorectal cancer is the second leading cause of death for men and women combined. However, colorectal cancer incidence and mortality rates are not uniform across race and ethnicity. From 2012 to 2016, colorectal cancer incidence rates (the number of new cases) among Black Americans were approximately 20% higher than those for White Americans. This disparity is also seen in mortality rates, also known as death rates. From 2013 to 2017, colorectal cancer death rates for Black Americans were nearly 40% higher than for White Americans. The disparities don’t end there. Black patients are more likely to have advanced stage colorectal cancer at the time of diagnosis, meaning the disease is much more difficult to treat.
For many late stage patients, clinical trials are a critical care option. Unfortunately, despite the higher incidence and mortality rates, Black Americans are only 60% as likely as White Americans to enroll in clinical trials. The disparity doesn’t only exist within the Black community either. Latinx/Hispanic populations represent a mere 6% of trial participants and in nearly two thirds of clinical trials, there is zero representation from Indigenous communities.
This is a multi-faceted issue with no one solution. Fight CRC is committed to working with our partners in the cancer community and others wishing to address racial and ethnic disparities in healthcare to ensure equal access to healthcare for all Americans. One policy that the patient community has been working on for some time that would be one step toward addressing health care disparities is the CLINICAL TREATMENT Act.
The legislation, sponsored by Rep. Ben Ray Luján and Rep. Gus Bilirakis would ensure Medicaid coverage of the routine care costs of clinical trials participation for patients with life-threatening conditions in every state. Currently, this coverage varies by state, effectively preventing Medicaid patients across the country the option of participating in clinical trials.
For many colorectal cancer patients, particularly those with late-stage colorectal cancer, there are fewer treatment options. Clinical trials represent a critical care option. Lack of coverage for the routine care costs associated with clinical trials should not be a barrier to enrollment. The impact of COVID-19 has made this legislation more important than ever as Medicaid enrollees are increasing and families are facing greater financial strain.
According to a recent survey conducted by Fight Colorectal Cancer, those who lost their jobs or who had a household member lose their job were more likely to report that they were not receiving quality care compared to those who were not financially impacted. Additionally, those who have had their work hours reduced, lost investments, and lost jobs were significantly more likely to report feeling nervous, anxious, and on edge compared to those not financially affected.
Fully addressing the racial and ethnic disparities in our healthcare system will take sustained and dedicated efforts. While passing the CLINICAL TREATMENT Act on its own is not sufficient, it is an important step forward that would have a meaningful impact for colorectal cancer patients across the nation.
Health Equity Through Patient Education
Recognizing that addressing health inequities is complex, Fight CRC has taken a holistic approach to creating patient centric content to address our community at large. We are committed to updating our patient education materials to reflect those that we serve, ensuring we represent our diverse community.
This past summer, Fight Colorectal Cancer translated the majority of our patient education print materials, including the Clinical Trials mini mag. We serve both English and Spanish speaking communities and it became apparent that making these resources accessible was a priority. Fight CRC is working hard to ensure that these resources are available in other languages in the future, and that the content and look and feel resonates within each unique community.
We also launched the Fight CRC Health Equity Committee in August of 2020. The Health Equity Committee consists of collaborative physicians, survivors, caregivers and front-line staff who serve as diversity champions and “model the way,” to address diversity issues, collectively promote health equity initiatives, and positively impact our organization and the communities we serve.
This committee will ensure that together with our community of relentless champions of hope, we can reduce health disparities by keeping our attention focused on the challenges of our country including structural racism, poverty, and barriers to health care and preventive services.
“As a person of color, I view myself as being different; because of these differences, my responses to various medications may not be the same. Therefore, it is critical to public health that we understand the importance of diversity in clinical trials.”
-Wenora Johnson, Stage III Colon Cancer Survivor
Other ways Fight CRC will aim to help reduce health disparities, specifically within clinical trial enrollment include:
A lack of cultural diversity in clinical trials is not new. The reasons that perpetuate this never ending cycle are deeply rooted in racism, inequalities, and biases to name a few. As an organization, we acknowledge that we are unable to solve every single facet responsible for the disparities in research and clinical trial enrollment we see today.
Fight CRC has an opportunity however to utilize our extensive knowledge, established relationships with the community, and our relentless pursuit for a cure to fight for each member of our community to access the best possible care.