Changing the System: Marginalized Communities and Cancer
- Sylvester Comprehensive Cancer Center’s outreach and research offer the framework to begin addressing disparities in cancer care.
- Erin Kobetz, M.D., Ph.D., says marginalized communities are less likely to have access to quality healthcare and live under the stress of systemic racism and poverty, which leads to poor health.
- Black women are 40% more likely to die of breast cancer than white women and Black men are more than twice as likely than white men to die of prostate cancer.
When it comes to cancer, members of marginalized communities have higher rates of mortality than other groups.
For example, Black Americans have higher death rates for many kinds of cancer, according to the National Cancer Institute. Despite having similar rates of breast cancer, Black women are more likely than white women to die of the disease. Hispanic and Black women have higher rates of cervical cancer, with Black women having the highest rates of death from the disease.
Sylvester Comprehensive Cancer Center, part of the University of Miami Miller School of Medicine and South Florida’s only National Cancer Institute (NCI)-designated cancer center, is working to identify and quantify the root causes of these disparities and taking strides to right them.
“Marginalized communities are often disenfranchised from the formal healthcare system,” said Erin Kobetz, Ph.D., M.P.H., associate director, community outreach and engagement at Sylvester and the John K. and Judy H. Schulte Senior Endowed Chair in Cancer Research. These community members tend to have a more difficult time accessing higher-quality care, distrust the medical system and have “lower levels of health literacy, which translates to lack of generalized awareness about cancer and the importance of early detection of disease.”
Members of marginalized communities are also more likely to live under more stress, including from systemic racism and poverty. Stress leads to poorer health and disease outcomes in families.
“It’s the perfect storm in which disparity takes root and becomes institutionalized over time,” said Dr. Kobetz.
Cervical Cancer: A Family Affair
In 2021, the World Health Organization (WHO) designated Sylvester as the first WHO Collaborating Centre for Cervical Cancer Elimination in the world. Sylvester is recognized for its diligent efforts and enduring commitment in creating outreach programs that raise awareness and provide screening opportunities for marginalized communities.
Human papillomavirus (HPV) causes six different cancers, including more than nine out of 10 cases of cervical cancer. But most people don’t realize cervical cancer can be eliminated and it isn’t just about women.
“Prevention and early detection of cervical cancer is a family affair, as it is a combination of both routine screening for mothers and grandmothers and vaccination for children,” said Dr. Kobetz, who mentioned the HPV vaccine, which can be offered to people starting at age 12.
Risk Factors That Increase Cancer Disparities
Members of marginalized communities tend to be more affected by social determinants of health. Living in poverty may mean chronic stress and living in locations with higher levels of pollution.
Marginalized and minority communities also overlap, Dr. Kobetz said. The stress of systemic racism can play a role in worse health outcomes and higher cancer risk.
That plays out in cancer mortality rates. For breast cancer, Black women are 40% more likely than white women to die of the disease. Hispanic and Latino women are more likely to be diagnosed at a later stage with a more aggressive form of the disease.
Through the Miami Breast Cancer Disparities Study led by Sylvester surgeon-scientist and social epidemiologist Neha Goel, M.D., M.P.H., researchers are working to understand the multilevel nature of disparities and how and where one lives affects breast cancer outcomes, particularly aggressive breast cancers.
“We aim to figure out how one’s neighborhood ‘gets under the skin’ to impact breast cancer outcomes and, more importantly, use what we find to tailor treatments and cancer control interventions to improve breast cancer disparities,” said Dr. Goel, also an assistant professor of surgical oncology and the John and Judy H. Schulte Endowed Chair in Cancer Research.
Cancer Care Disparities and Outcomes
Prostate cancer also has much higher mortality rates in Black men than white men. Black men are more than twice as likely to die of the disease.
In a recent paper published in Lancet Digital Health, Brandon Mahal, M.D., assistant professor of radiation oncology at Sylvester, showed that mortality disparities come down to differences in care, not genomics.
“When patients are treated in more equal care settings, the risk of dying from prostate cancer equalizes,” he said.
In the study, he and coauthors looked at the genomic profiles and treatment patterns of nearly 13,000 men with advanced prostate cancer. They found that men of African ancestry, despite being at greater risk of developing advanced disease, are less likely to get comprehensive genetic profiling of their tumors earlier in treatment.
That means they don’t get targeted treatment, which would improve outcomes. They were also less likely to participate in prostate cancer trials, thus shutting off access to newer, more effective treatments for advanced disease.
Targeted Outreach and Screening for Prostate Cancer
Sylvester’s precision outreach program uses a proprietary tool called SCAN360 to identify neighborhoods with high prostate cancer burdens.
Little Haiti is a hot spot for prostate cancer. In September 2022, Sylvester started mobile screening via Sylvester’s Game Changer vehicles that introduce cancer screenings and health information to underserved communities in South Florida. Since then, 324 men have been screened for prostate cancer. Seventy-four percent of those men had never been screened and most had elevated PSA, an early warning sign for cancer.
“We’re coordinating care for those men because, when you catch prostate cancer early with screening, it can be very curable,” said Dr. Mahal.
SCAN 360 has also been used to identify areas with high levels of cervical and other gynecological cancers. Sylvester’s outreach team uses that data to plan listening sessions to understand the needs of those communities and determine the pathways to encourage screenings.
The sessions prompted a self-sampling method for HPV screening that addresses community concerns about provider-collected screenings. Self-sampling is also used by the Game Changer vehicles.
Funding for Cancer Programs
Disparities in cancer rates won’t be fixed without analyzing research funding. In a recent study, Shria Kumar, M.D., a colorectal cancer researcher at Sylvester, led a team that showed the wide disparity in federal funding for cancer research.
The results, published in the Journal of the National Cancer Institute, found that the National Cancer Institute and non-profit funding increases the more frequently a cancer occurs in white patients. In contrast, cancers with a higher incidence in ethnic minority populations are relatively underfunded.
“On a system level, it should be really easy to allocate money fairly,” she said. Agencies can use this research to change how they distribute funding, like “perhaps using cancer lethality as a measure for funding allocations.”