The oncology community continues to study the differences in the occurrence (also called incidence), frequency (also called prevalence), and survival (also called mortality) rates of cancer among different populations in the United States. These populations may include members of minority groups, older adults of any race or background, and those who are poor or geographically isolated. Cancer.Net talked with Karen Winkfield, MD, PhD, Assistant Professor, Harvard Medical School, and member of ASCO’s Health Disparities Committee to learn more about health disparities in cancer.
Q: What are health disparities and the contributing factors?
A: In 1999, the National Institutes of Health issued its first official definition of health disparities: “differences in the incidence, prevalence, mortality, and burden of diseases and other adverse health conditions that exist among specific population groups in the United States.” While the term “health disparities” can apply to many different populations (including groups that differ based on age, gender, socioeconomic status and sexual orientation), it is more commonly used to express differences seen among racial and ethnic minorities in the United States. For example, black men and women bear the greatest burden of disease across almost all health conditions in the United States—heart disease, cancer, HIV/AIDS, infant mortality, asthma—to name just a few. The causes of health disparities are multifactorial and closely associated with social and economic disadvantages. However, for many illnesses racial health disparities are seen even after adjustments are made for socioeconomic status. When specific populations are so negatively affected by disease, this becomes more than just a health concern – it enters the realm of social injustice.
The World Health Organization (W.H.O.) defines health as “a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity.” Many factors cited as contributors to health disparities (such as poverty, lack of insurance, low literacy, and mistrust of doctors) are historically linked to discrimination and the systematic exclusion of marginalized people from the ability to achieve social and economic well-being. As such, black populations in the United States have been ascribed a state of “unhealth” for centuries. In order to begin closing racial and ethnic gaps seen in disease prevalence and outcomes, we must focus on ways to improve health equity with greater effort applied to addressing injustices that affect the health of vulnerable populations.
Q: How do health disparities affect people with cancer?
A: Cancer disparities are vividly demonstrated in black American communities. While incredible progress has been made to reduce cancer mortality for all populations, blacks continue to suffer the greatest incidence and poorest outcomes for each of the most common types of cancer. Black men are diagnosed with prostate cancer at almost twice the rate of any other racial/ethnic group. Death from prostate cancer in black men is more than twice that seen in white men. Furthermore, although white women have a higher incidence of breast cancer, black women experience higher breast cancer mortality. Similar racial disparities exist in other cancer types.
Factors associated with worse outcomes for people with cancer include low socioeconomic status, lack of health insurance, and inadequate health insurance. These barriers may negatively affect the ability to seek proactive cancer screening or timely disease treatment. They may also limit access to cancer specialists, clinical trials, or state-of-the-art treatments. These factors can even influence major choices patients make about treatment. I have interviewed women who elected to undergo mastectomy rather than breast conservation following a breast cancer diagnosis because they could not afford time away from work and the potential loss of pay associated with a prolonged course of daily radiation therapy. So health disparities affect cancer screening, available treatment options, disease outcomes, and quality of life.
Q: Can you talk about some of the current research surrounding cancer-related disparities?
A: A recent study published in the journal Cancer analyzed the outcomes of over 2 million people diagnosed with cancer between 1988 and 2007. The study showed that race-based differences in outcome persisted independent of cancer stage and treatment. The survival gap for black Americans has not closed over time despite the well-established documentation that these disparities exist. In addition, several studies investigate genetic variations that may account for disparate outcomes.
I am most excited about qualitative research that focuses on identifying social determinants of cancer-related disparities. Research methods such as semi-structured interviews and focus group data bring a wealth of information that otherwise would be difficult to thoughtfully and systematically evaluate. It is gratifying to know that journals and institutions are seeing the value that qualitative research brings to the complex issue of cancer disparities. Understanding perceptions, behaviors, and cultural circumstances that affect the health of communities is a major step towards developing sustainable programs to improve health equity.
Q: What is ASCO doing to reduce disparities in cancer care?
A: There has been a recent focus on global oncology with a goal of assisting developing nations with cancer care programs. In many instances, funding is readily available to help support international efforts and it can indeed be satisfying since often small changes can make a big impact. But as briefly outlined above, there is so much work to be done to improve health equity and cancer care among vulnerable populations here in the United States.
ASCO is actively engaged and committed to reduce disparities in cancer care. Some of their work includes:
- Advancing the education of the oncology community in the care of patients from underserved and/or minority populations, and the biology of cancer in different populations
- Increasing the diversity of the clinical oncology workforce as a requisite to improving access to cancer care for the underserved. The Diversity in Oncology Initiative (DOI) is designed to facilitate the recruitment and retention of individuals who are underrepresented in medicine to cancer careers. The Medical Student Rotation and the Resident Travel Award offer support through the Conquer Cancer Foundation for clinical or research oncology rotations for medical students and travel to the ASCO Annual Meeting for residents who are from populations underrepresented in medicine. The DOI recently established a diversity mentoring program to provide structured mentoring for medical students and residents who are interested in oncology careers.
- Supporting research and the development of clinical cancer researchers in the area of health disparities
- Advocating for public policy that ensures access to cancer care for the underserved and that supports increased clinical cancer research in health disparities
- Supporting programs to help eliminate healthcare disparities in cancer risk assessment and early detection and providing practical tools and resources to help oncology providers use strategies in their practices to reduce cancer care disparities
To fulfill these commitments, ASCO’s Health Disparities Committee works to develop programmatic and policy solutions to reduce disparities in cancer care and outcomes. The Committee provides recommendations to the ASCO Board of Directors on strategies to effectively address healthcare disparities across the cancer care continuum from prevention to end of life care.