African American women in the U.S. are 41 percent more likely to die of breast cancer than white women, even though they are less likely to be diagnosed with the disease. They also have the highest rates of the most aggressive and most difficult to treat breast cancer subtypes—such as triple negative breast cancer. African American women are more likely to be diagnosed at younger ages than white women and are often diagnosed with late-stage diseases when treatment options are limited and costly, and the prognosis is poor.
These inequities are often attributed to a variety of biological, socioeconomic, and cultural factors, but no single factor or combination adequately explains them. One thing is clear: Breast cancer mortality rates in the African American community constitute a health crisis that cannot be ignored.
We must get beyond the mantras of “bad genes,” “bad luck,” and “bad lifestyle,” to change these appalling statistics and prevent untimely deaths by ensuring equal access to high-qual¬ity care and life-saving treatment.
Since 1982, the Susan G. Komen breast cancer organization has invested more than $37 million in over 1,800 community health programs, specifically addressing breast cancer disparities through root cause solutions encompassing community collab¬oration, health systems improvement, and patient navigation. Komen has also provided about $90 million in groundbreaking medical research grants to aid our understanding of the bio¬logical, environmental and social factors that contribute to disparities.
One of the most promising community approaches supported by Komen is the Metropolitan Chicago Breast Cancer Task Force (the “Task Force”). Physicians, community leaders, and public health advocates across Chicago convened to form the Task Force in 2007. Komen provided $2.6 million to support the work of the Task Force, which is a collaboration of the Sinai Urban Health Institute, Avon Foundation for Women, Blue Cross Blue Shield of Illinois, National Institutes for Health, Illinois De¬partment of Public Health, Telligen and a host of other public and private entities.
Upon its creation, the Task Force set out to reduce breast cancer mortality rates, which were an alarming 62 percent higher for women in Chicago’s most economically disadvantaged neigh¬borhoods versus more affluent areas of the region. In five years, the work of the Task Force has reported stunning progress: a 35 percent reduction in the death rate gap between African-American women and white women in the region.
The Task Force Model informs the strategy and lights the path toward closing the gap in breast cancer disparities in commu¬nities across the U.S.—a fight that Komen believes is winnable.
The following is a summary of the 2014 Metropolitan Chicago Breast Cancer Task Force Report: “How Far Have We Come? Improving Access to and Quality of Breast Health Services in Chicago.” Citations have been omitted. The full version of the Report can be found here: http://www.chicagobreastcancer.org56.
Across the United States, healthcare disparities affecting African-American women in certain locations, such as Chicago, have re¬sulted in significantly worse outcomes for many different major diseases, including breast cancer. As a result, African-American women in Chicago are far more likely to die of breast cancer compared to white women, at rates above the national average and averages of other cities. These realities most recently came to light in 2006 when researchers published a disturbing study documenting a large and growing inequality in survival from breast cancer in Chicago.
In the 1980s, black women and white women died of breast cancer at relatively comparable rates. By 2006, improvements in screening and treatments caused breast cancer death rates to fall by half for white women. Those improvements, however, did not seem to reach African-American women, who were dying of breast cancer at a 62 percent higher rate than white women in the region. Additionally, death rates for African-American women in Chicago remained higher in comparison to other cities such as New York, Baltimore, and San Francisco. These facts suggested that the health system in Chicago, rather than biology, was at play.
Call to action
Community concern surrounding the published disparities data led to a Call to Action that mobilized the Chicago metropolitan area to demand change and resulted in the creation of the Task Force.
The Task Force published an initial report in October 2007 that highlighted three possible issues causing the increased breast cancer death rate for black women in Chicago: less access to mammography, lower quality of mammography services, and less access to and lower quality of treatment.
The Task Force created a specialized healthcare collaborative program called the Chicago Breast Cancer Quality Consortium. The Consortium collects mammography screening and treat¬ment data from area institutions to determine if they are meeting national standards of care for finding and treating breast cancer. Through the Consortium, the Task Force demonstrated that quality of care varies in Chicago, especially for mammography services. This variation and fragmentation of care, particularly on Chicago’s South Side, is likely to affect the stage of diagno¬sis, the adequacy of treatment, and survival.
The Consortium has also shown that Chicago has systemic barri¬ers that inhibit access, including: lack of financial resources, including insurance; public health programs that provide free services but are unreliable because of chronic underfunding, suboptimal equipment, and inadequate staff training and ex-pertise; variation in the quality of care with potentially more lower-quality care provided to poor, uninsured, and publicly insured women; and inequitable distribution of high quality breast care resources and low participation in screening by public providers.
It has also been found that the breast imaging centers of excellence are generally absent from areas where the breast cancer mortality is highest and are absent from where women of color live. Many other quality resources are inequita¬bly distributed.
The Task Force addresses these challenges by collaborating with health care partners to improve the quality of care and by providing free trainings to health care professionals, especially in safety net venues where resources to pay for trainings are scarce.
Community outreach
The Task Force’s community organizing and public policy pro¬grams are working to address breast cancer mortality disparities in Chicago. Importantly, the Task Force engages grassroots organizations that serve African American and Latina women, helping to increase success while empowering the community.
Through Screen to Live, a free community-based outreach, education, navigation, and quality improvement program, over 1,000 women in Englewood and West Englewood receive ser¬vices. This area has one of the highest breast cancer mortality rates in Chicago with less than 25 percent of women aged 40 and over receiving regular screenings.58
In 2012, the Task Force launched Beyond October to address the chronic shortfall in mammography services for both unin¬sured and underserved women, offering free mammograms to women across Metropolitan Chicago. Through Beyond October, the Task Force worked with health institutions to donate free mammograms, with a goal of providing 1,000 free mammo¬grams by 2013. Both highly resourced hospitals and safety net hospitals generously donated mammography services to Beyond October.
The Task Force then worked with commu¬nity organizations to organize outreach events and initiatives in the community. In addition to education and mammogram services, the Task Force also provided navigation services to free diagnostic and treatment services, and collaborated with organizations, such as the Sinai Urban Health Institute to reach, educate, and navigate women to breast care.
Where do we go from here?
This report documents the first sign of a decrease in the mortal¬ity disparity in Chicago since 2005 after a persistent increasing trend over 20 years. Since 2007, the Task Force and others, such as the Sinai Urban Health Institute’s Beating Breast Cancer program at the University of Illinois, have partnered to improve women’s access to high quality breast care and to navi¬gate women to care. The Task Force has become a leader in com¬prehensive assessment of the breast health system, measuring quality for breast cancer screening and treatment.
Our goal is to eliminate this disparity completely. We are proud of the work Chicago has done to close this gap and are commit¬ted to forging ahead by:
Increasing access to quality breast health care for all women. We will navigate more than 2,000 women in partnership with 18 institutions, which is a 25 percent increase from 2013. Through the Extra Help, Extra Care, Beyond October, and Beyond Enrollment programs, women in need of diagnostics and treatment will receive more cohesive and comprehen¬sive navigation.
Improving the quality of mammography services for all women. Through our Mammography Quality Initiative, we expect a 5-to-10 percent participation increase in mam¬mography facilities and radiologists providing feedback on the quality of mammograms. This would be the first effort nationwide to build such an informative mammography sur¬veillance system, with an estimated 650,000 mammograms expected statewide. Armed with this data, we will continue to engage stakeholders in custom process improvement initiatives to collectively increase the quality of mammog¬raphy at the provider, technician, and facility level. This in¬formation-intervention approach represents one more step towards eliminating the disparity.
Improving access to high quality treatment and understand¬ing of breast cancer treatment disparities. We will build upon our treatment quality data project to comprehensively measure the full complement of breast cancer treatment and variation in breast cancer types in Chicago.
Advocating to enact policy changes to strengthen our health¬care system and prevent cuts to the Illinois Breast and Cervi¬cal Cancer program.
Partnering to expand the Chicago Model as a replicable and scalable model to address breast cancer disparities across the country.
It is our hope that this report inspires action. Together we can work to ensure that every woman has an equal chance at surviv¬al from breast cancer.
Judith Salerno, MD, MS, is president and CEO of Susan G. Komen for the Cure.
Reprinted from the Kelly Report on Health Disparities in America. (http://robinkelly.house.gov/sites/robinkelly.house.gov/files/2015%20Kelly%20Report.pdf).
