The magnified impact of the COVID-19 pandemic on Black and brown communities clearly exposes systemic inequities in healthcare in the United States. Data from the Centers for Disease Control report that Black, Latinx, and Indigenous people represent a disproportionately large percentage of confirmed COVID-19 cases and are hospitalized and die of the virus at several times the rate of whites.
Similar disparities have persisted for decades in cancer research and treatment. For instance, Black people in the United States still have the highest death rate and lowest survival rate of any racial or ethnic group for most cancers. Hispanic Americans are more likely to be diagnosed with advanced stages of disease and experience poor quality of life following a cancer diagnosis.
The most recent data available from the U.S. Food and Drug Administration show that only four percent of cancer clinical trial participants are Black and five percent Hispanic. Without more robust participation consistent with the proportion of diverse populations in the United States, the cancer research community cannot be confident that all patients are benefitting equally from new targeted treatments. These conditions cannot be allowed to persist.
Determinants of health
“Social determinants of health” are economic and social conditions that influence individual and group differences in health and wellness, such as how lack of transportation limits a person’s ability to travel to a cancer center to participate in a clinical trial. It is incumbent on the medical community to systematically break down the barriers that hinder diverse participation. Though numerous, these barriers are not insurmountable with informed and intentional mitigation.
It’s important to recognize that there is no single fix, and it’s not as simple as mandating a specific threshold of diverse participation.
But important first steps have been implemented, such as Stand Up to Cancer’s (SU2C) Health Equity Initiative, which requires research teams supported by the organization to meet a new set of guidelines, goals, and milestones.
Newly funded research teams are required to create a plan reflecting the cancer being studied and whether an ethnic population is at increased risk or experiences different or more severe outcomes. They must also identify barriers to recruiting and retaining diverse patients as well as measures taken to mitigate their impact, such as collaborating with the community.
Community-based organizations can help teams improve awareness and provide more effective patient education. Documents should not simply be translated — but developed using culturally relevant messaging. Because more than 80 percent of cancer patients are treated in local community settings, it is important to bring trials to patients rather than forcing people to travel to major cancer centers in cities in order to participate.
These measures are not simply aspirational suggestions. Accountability is essential. When SU2C awards a new team grant, these plans will be integrated in the contractual scope of work and used to measure progress during formal reviews. Failure to meet milestones can affect continued funding.
SU2C is also receiving proposals that are specifically focused on addressing health equity in cancer research by integrating social and behavioral determinants of health, and will provide supplemental funding to teams to address education and research on lung cancer diagnosis and treatment in Black and underserved communities.
The bigger picture
Addressing disparities in cancer research is not going to be solved by any single organization. Beyond SU2C’s efforts, increased attention to health disparities in connection with both COVID-19 and cancer research should amplify conversations and drive all advocacy organizations and research institutions to explore new approaches to address inequities in clinical trials.
Research paradigms can change, and with collective purpose throughout the research community, we will achieve equity in cancer clinical trials and in the new more effective treatments developed.