Problem: African American women are much more likely to die from breast cancer than White women. Yet they do not take full advantage of breast cancer education and prevention services, even when these services are offered free of charge and in community settings. Public health providers are working to find ways to reach out more effectively to African American women and narrow breast cancer health disparities.
Background: As a young girl, Janice Phillips watched her grandmother fight a losing battle against breast cancer. This experience has motivated her to help others win the battle her grandmother lost.
In the late 1950s, Phillips, PhD, RN, FAAN, was living with her older brother (who suffered from polio) and her grandparents in a cramped basement apartment on the South Side of Chicago. Memories of that difficult time have blurred over the last five decades, but one still stands out clearly: the day a public health nurse came to care for her grandmother, who was battling the final stages of a mysterious disease.
“I remember so vividly this nurse coming and changing my grandmother’s dressing,” recalls Phillips, a Robert Wood Johnson Foundation (RWJF) Health Policy Fellow (2010-2011). “There was a smell. It smelled like raw meat. Then one day I was in nursing school and we were talking about breast cancer, and it clicked; the disease my grandmother had all those years ago was breast cancer. Nobody in my family had ever talked about it.”
For Phillips, the fetid odor of her grandmother’s decomposing flesh is just one of the many painful memories she has of a difficult childhood. She spent her early years under the care of a mother who was mentally ill and eventually institutionalized. She then moved in with her grandparents, both of whom died a few years later. And as a teenager, she was evicted from her home and sent to live with an abusive foster mother.
A helpful guiding hand finally came when she reached early adulthood. A school social worker saw great potential in Phillips and helped her enroll in North Park University in Chicago. She moved away from her abusive foster mother and fought her way to a bachelor’s degree in nursing. After graduating, she spent nearly two decades working at the University of Chicago Medical Center. Then—despite a personal pledge that she would never set foot in a classroom again because she found university life foreign and often difficult—she went on to earn her master’s degree.
With her advanced degree in hand, Phillips joined the public health school at the University of Illinois at Chicago and became a nurse clinician. She worked in Englewood, a low-income, largely African American neighborhood in Chicago, offering residents free breast and cervical cancer education and screening in accessible venues such as beauty parlors and currency exchange shops.
To Phillip’s great frustration, however, many women weren’t taking advantage of the services she and her colleagues were offering. But these services were and still are desperately needed in Chicago; according to the Metropolitan Chicago Breast Cancer Task Force in 2005, African American women are 116 percent more likely than White women to die of breast cancer.
Why were Englewood residents so reluctant to accept free and accessible preventive services, Philips wondered, and what could she and other public health nurses do about it?
It was a question that raised the specter of Phillips’ grandmother, who likely did not have access to the full range of early and comprehensive health care that was available at the time. “I’m assuming her cancer was diagnosed at a very late stage,” Phillips says. “It certainly solidified in my mind the value of people having access to detection and treatment services.”
The desire to know more—and to help other women survive a disease that took the life of her beloved grandmother—burned so great that Phillips sought to advance her education yet again.
She applied to the doctoral program in nursing at the University of Illinois, but was rejected, not once but twice. Still, she persevered and on the third try, she was accepted—and also given a full scholarship and stipend. After admission, Phillips received a prestigious pre-doctoral grant from the National Institutes of Health to study health disparities in breast cancer.
Solution: For her dissertation, Phillips studied barriers to breast cancer screening among three groups of African American women: those who were employed and had access to health insurance; those who were employed but did not have health insurance; and those who were unemployed and without coverage.
Women in all three categories were less likely to be screened than White women, she found. African American women faced particularly high barriers related to accessibility and affordability. Employed women didn’t have time to get screened because health care providers were not available in off-hours in the evenings or on weekends or because they couldn’t afford insurance deductibles. Some women reported a decreased sense of personal susceptibility to breast cancer. This was especially true among middle-income women. And women without insurance—both employed and unemployed—faced other barriers.
Phillips took what she learned from her influential dissertation to the East Coast. There she became the first African American nurse in the country to receive an American Cancer Society professorship in oncology nursing to advance the body of knowledge on breast cancer disparities. As an assistant professor in the nursing school at the University of Maryland, she oversaw the integration of health disparities content into undergraduate and graduate community health and oncology nursing curricula.
She also supplemented her quantitative dissertation study with qualitative research, leading her to coin the oft-cited phrase “fear, fatalism and silence” to describe African American women’s attitudes toward breast cancer screening. Many African American women, she found in focus group research, were reluctant to seek screening for one of three reasons: they couldn’t bear knowing if they had a life-threatening disease or were afraid of being rejected by loved ones (fear); they felt that nothing could be done for them if they were diagnosed with the disease (fatalism); and they didn’t feel comfortable discussing the disease with others, even their loved ones (silence).
She also worked as a consultant for the American Nurses’ Association, the American Federation of Teachers and the Illinois Foundation for Quality Health Care and then as an employee of the National Institute of Nursing Research and the American Institute for Research. Phillips then returned to her native Chicago to manage nursing research at the University of Chicago Medical Center and to teach at the College of Nursing at the University of Illinois in Chicago.
Ever since, she has taken on a greater advocacy role. As a member of the boards of the Metropolitan Breast Cancer Task Force and the Chicago affiliate of Susan G. Komen for the Cure, she has worked to promote legislation aimed at narrowing cancer disparities in Illinois.
The effort has paid off; in the last four years, the state Legislature enacted legislation that established state standards for clinical breast exams and required public and private insurers to cover the procedure (2007); required insurers and the government to take steps that would help eliminate breast cancer disparities (2009); and required insurance companies to cover medical costs related to cancer clinical trials (2011).
In 2010, Phillips moved back to the East Coast to serve as a RWJF Health Policy Fellow in the Washington, D.C., office of Sen. John Rockefeller of West Virginia. In this role, she has worked on health reform in general and on legislation that would combat prescription drug abuse in particular. When she completes the program later this year, she plans to put her newly honed legislative and advocacy skills to use in the campaign to narrow health disparities. “I’ll be stronger advocate because of this experience,” she says.
RWJF Perspective: The mission of the Robert Wood Johnson Foundation is to improve the health and health care of all Americans. A key part of this goal is narrowing health disparities that undermine the health and health care of African Americans and other vulnerable populations. To narrow disparities, the Foundation supports a variety of programs aimed at supporting groups underrepresented in health fields. These programs include the Harold Amos Medical Faculty Development Program, the Summer Medical and Dental Education Program, Project L/EARN, and New Connections: Increasing Diversity of RWJF Programming.
The Foundation also supports the Future of Nursing: Campaign for Action, a collaborative effort to implement solutions to the challenges facing the nursing profession and to build upon nurse-based approaches to improving quality and transforming the way Americans receive health care. The solutions promoted by the campaign are grounded in a report released last year by the Institute of Medicine that encourages nurses to take leadership roles in the nation’s health care system and highlights nurses and nurse-led programs that are working to reduce health disparities. It is called The Future of Nursing: Leading Change, Advancing Health.
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