National Minority Health Month: Identifying Disparities in Access to Cancer Clinical Trials

April is National Minority Health Month, an opportunity for public health advocates to take an intentional look at steps being taken to address disparities in health outcomes in our communities. Significant progress has been made in reducing certain cancer disparities, but to advance that progress we must continue to comprehensively examine all disparities that exist in cancer research, treatment and outcomes.  

Policy and legislative change that addresses those disparities are high priorities for ACS CAN. To that end, we worked with Rep. Elijah Cummings (D-MD), Chairman of the House Oversight and Reform Committee, and Senators Chris Van Hollen (D-MD) and Benjamin Cardin (D-MD) to draft the Henrietta Lacks Enhancing Cancer Research Act of 2019, which was introduced in Congress at the end of March. This legislation aims to identify the reasons for the considerable disparities in access to cancer clinical trials that persist in underrepresented communities. The bill is named in honor of Henrietta Lacks, an African-American woman who died of cervical cancer in 1951 and whose cells have served as the foundation of some of modern medicine’s most significant advances, including the development of the polio vaccine and treatments for cancer, HIV/AIDS and Parkinson’s Disease.

The bill directs the U.S. Government Accountability Office to study current public policies that affect enrollment and participation rates in cancer clinical trials and to recommend policy changes that will reduce barriers that prevent certain patients from enrolling. Clinical trials are a critical component of medical advances in cancer research and treatment, and their success depends on enrollment that is representative of diverse communities.

ACS CAN’s landscape clinical trials report highlights numerous barriers that exist for patients attempting to enroll in a cancer clinical trial and finds that providers fail to discuss discuss trial options with trial-eligible patients, particularly patients from minority communities. ACS CAN shared that research and other resources, including ACS CAN's Cancer Disparities Chartbook, with the bill’s co-sponsors to support our collective goal of advancing legislation that will reduce such barriers and encourage diverse representation in trials. Demographic and socioeconomic disparities in trial enrollment can occur anywhere along the pathway from the design of the trial, to provider patient interactions, to factors affecting patient enrollment decisions.

As ACS CAN President, I’m proud that our organization contributed to the development of this important and necessary legislation; and as a Maryland resident, I’m glad to see our state representatives are taking a leading role in addressing this critically important issue that impacts our ability to ensure communities of color have equal access to the progress we’re making against cancer.