Karen Winkfield, MD, PhD, is an Ingram Professor of Cancer Research at the Vanderbilt-Ingram Cancer Center and the Executive Director of the Meharry-Vanderbilt Alliance in Nashville, TN. She is the former Chair of ASCO’s Health Equity Committee. She is the 2019-2022 Cancer.Net Associate Editor for Radiation Oncology and Health Equity.
Cancer does not affect all people equally. The phrase “cancer disparities” refers to the differences in the number of new cancer cases, as well as differences in cancer outcomes, that exist among different populations. Disparities more often negatively affect racial and ethnic minorities, poor people, sexual and gender minorities (LGBT+), adolescent and young adult populations, and older adults.
Identifying cancer health disparities helps us work together with the communities at highest risk to find out the best ways to reduce cancer risk and improve access to preventive care and treatment.
Q: What are health disparities?
Here in the United States, health disparities are commonly used to describe differences in illnesses among racial and ethnic minorities. However, it is important to note that health disparities impact many different groups based on factors like age, gender, education level, income, disabilities, and sexual orientation.
Health disparities based on race seem to persist even after taking into account a person’s socioeconomic status, which is typically measured as a combination of income, occupation, and education. For example, Black men and women bear the greatest burden for many conditions, including cancer, heart disease, HIV-AIDS, asthma, and childhood death. These disparities often exist regardless of a Black person’s socioeconomic status. The burden of disease among certain populations represents a form of social injustice based in structural racism. These facts have been highlighted by the recent COVID-19 pandemic.
Q: Who is most affected?
Black, American Indian, and Alaskan Native communities experience the worst cancer health disparities among racial/ethnic groups in the United States. These populations continue to suffer the greatest rates of cancer and the poorest outcomes for each of the most common types of cancer, despite incredible progress in reducing overall deaths from cancer.
The statistics for Black men and Black women are alarming. Black men are diagnosed with prostate cancer at almost twice the rate of any other racial or ethnic group. Black men die from prostate cancer twice as often as white men. Black women have a 13% higher relative risk of dying from cancer, according to a 2019 report from the American Cancer Society. Black women are 40% more likely to die from breast cancer, even though white women are more frequently diagnosed.
Q: Why do certain racial and ethnic minorities experience health disparities?
Health disparities experienced by racial and ethnic populations is linked to a history of discrimination and systematic exclusion that has prevented communities of color from achieving social and economic well-being. The resulting poverty, lack of education, and unstable job opportunities, worsen issues that are specific to health security, such as lack of health insurance and a mistrust of doctors. Black people in the United States have been associated with “unhealth” for centuries, with the beginning of health inequities rooted in the trauma of slavery.
Q: How do health disparities affect people with cancer?
The bottom line is: Cancer outcomes are worse in people who experience health disparities.
Why? Because other diseases affect our ability to treat cancer well.
Heart disease, obesity, diabetes, and infections (including the novel coronavirus that leads to COVID-19) all disproportionately impact Black communities. These health disparities can make cancer treatments, including surgery, chemotherapy and other systemic treatments, and radiation therapy much harder to give, or treatments may cause more severe side effects. Factors that lead to health disparities—including poverty, socioeconomic factors, lack of trust in doctors and medicine, low literacy, and inadequate health insurance—create barriers to good care along the entire cancer continuum, from prevention and screening through treatment and end-of-life care.
Socioeconomic factors such as job security play a major role in treatment decisions and, ultimately, cancer outcomes. I’ve seen this firsthand in my community outreach in many cities, including my work in Boston and Winston-Salem. For instance, I have talked with women around the country who felt forced to choose a mastectomy (surgery to remove the breast) instead of more time-consuming, daily radiation treatments that may preserve the breast because they worried about being able to take time off from work or the potential loss of pay.
Poor people are less likely to enroll in clinical trials for cancer treatments, according to a 2016 study in the Journal of the American Medical Association Oncology. Clinical trials offer new treatments that might improve cancer outcomes. However, people with low income or insufficient health insurance may not have access to specialist doctors or the genetic tests needed to enroll in clinical trials. My fear is that the divide will widen between groups if we don’t create policies to provide equal access to genetic testing and clinical trials.
Q: What research is being done to reduce health disparities?
We’ve known for centuries that health disparities exist. Research continues to show (over and over) that racial and ethnic minorities face poorer cancer outcomes. More reporting on the problem is not needed. Let’s move beyond simplistic reporting of disparities and actually change the lives of people with cancer.
Improving cancer screening is one goal—and the U.S. government has funded several programs for people with low income or without health insurance. Improving how patients navigate the health care system, such as how appointments are made or how clinicians follow up with patients after treatments, is another goal. It can reduce costs and improve cancer screening, according to a 2018 study on colorectal cancer. And a recent workshop explored the topic of patient navigation programs in depth.
Examining the cost of enrolling in clinical trials is another research topic. A recent ASCO policy statement outlines these challenges, but few recommendations for overcoming financial barriers are available.
For me, the most exciting research pinpoints the social issues that underlie health disparities. Semi-structured interviews with people and focus group data bring a wealth of information, and I hope journals and academic institutions continue to support this type of research. They tell us how people’s perceptions, behaviors, and cultural circumstances affect the health of communities and help us develop specific programs to improve health equity.
Q: What is ASCO doing to reduce disparities in cancer care?
I’m proud to say that ASCO has made addressing cancer disparities a key aspect of its mission and agenda for more than 2 decades. The first Advisory Group on Health Disparities was established in 2003, and today the ASCO Health Equity Committee develops programs and policies to address health disparities in all aspects of cancer care.
Increasing the diversity of nurses and doctors who help patients with cancer is a key goal. ASCO’s Diversity in Oncology Initiative awards program helps recruit and retain underrepresented people in medicine, so they may follow careers in cancer. Efforts are also underway to educate providers and patients about health disparities in cancer care.
Another project helps medical practices that serve underserved populations improve the quality of their cancer care through mentorship and support from ASCO. And ASCO continues to advocate for health equity everywhere.
Q: What is health equity?
The Robert Wood Johnson Foundation describes health equity as when everyone has the opportunity to attain their highest level of health. To improve health equity, greater efforts must be made to address injustices that affect vulnerable populations like Black men and Black women. Only then can we begin to positively change differences in cancer prevalence and outcomes.