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Of all the dire health issues in the city, perhaps none is more troubling—and mystifying—than the black-white disparity in breast cancer mortality, which grew from a crack to a gap to a chasm over the course of two decades. Throughout the 1980s, breast cancer killed black and white women in Chicago at roughly the same pace, resulting in about 38 deaths per 100,000 each year. But starting in the early nineties, the rate for white women began to nose downward, while the rate for black women remained stubbornly aloft. By 2003, the rate for white women had fallen to about 24 deaths per 100,000; for black women it had actually ticked upward, to about 40 deaths per 100,000—producing a 68 percent divide, according to Sinai data, nearly double the size of the national black-white gap.
The improvement for white women was easy enough to explain. The best defense against cancer is to catch tumors early and treat them before they can grow and spread havoc to other parts of the body. Years of efforts to raise awareness about the importance of breast self-exams and regular mammography screenings—x-ray images that can often reveal changes in the breast before they can be felt by hand—coupled with improvements in mammography technology, meant that more tumors were getting detected early, literally making the difference between life and death for growing numbers of women. Meanwhile, advances in treatment further upped survival rates. It wasn’t that the incidence of breast cancer for black women had climbed locally—it remained below that of white women, says Monica Peek, an assistant professor of general internal medicine at the University of Chicago. “It’s that black women were not seeing the benefit of what medicine had to offer.”
“For black women in Chicago, we are exactly where the whole nation was 20 years ago,” says Carol Ferrans, deputy director of the Center for Population Health and Health Disparities at the University of Illinois at Chicago (UIC) Cancer Center. “And other big cities, such as New York, have kept pace much better. It’s an embarrassment for us, because it’s not an urban problem all over the United States. It’s particularly bad here in Chicago.”
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What could explain the divide? Some theories are not specific to Chicago. A growing body of evidence suggests, for example, that women of African descent are susceptible to a form of breast cancer—the one that Martha Haley is fighting—that attacks at a younger age, progresses more aggressively, and is less responsive to treatment than the breast cancers that strike women of European descent. What’s more, studies on the subject—including one at the University of Chicago and one at the University of Illinois at Chicago—are examining how stress from the social environment may make women more vulnerable to sporadic gene mutations that can trigger this early form. “I think the mistake we’ve made in health disparities is we’ve said it’s either nature or nurture,” says Sarah Gehlert, director of the University of Chicago’s Center for Interdisciplinary Health Disparities Research. “We think it’s an interaction of things—maybe 30 percent genetic, 40 percent health behavior, with shortfalls in health care, environmental exposure, and social circumstances making up the rest.”
Important as that research may prove to be—suggesting, for example, that African American women may need to get regular mammography screenings earlier than the age of 40 that is now the recommended benchmark for all women—it does not adequately explain why Chicago’s disparity in mortality is so large and apparently getting larger. Among local health care leaders and breast cancer experts, there’s no shortage of other theories, many of them having to do with the kind of intractable underlying social issues that can be found in any big city but may be particularly acute in parts of Chicago.
“Women who are disadvantaged face tremendous hurdles in trying to access the sort of health care that women who have insurance and money have easy access to,” says the UIC’s Carol Ferrans. “We all know that not all women of color are low-income, so the problems we’re identifying are true of all financially disadvantaged women in Chicago. But because we have a disproportionate number of women of color at the low end of the income spectrum, we use color as a surrogate for financial problems.” For many such women, she says, something as critical as an annual mammography screening, which can cost $50 to $150, is simply “not a priority in their lives because they have so many other crises and need money for so many other things, like food and rent.”
With the erosion of employer-sponsored health care coverage swelling the ranks of the uninsured and underinsured, basic medical care has gotten too expensive for growing numbers of working women. “If people have to choose between health care and feeding and clothing their kids, they often put off health care,” says Elizabeth Marcus, a breast cancer surgeon at John H. Stroger Jr. Hospital of Cook County. Result: “Their diseases get treated at a much later stage,” she says, “when it’s harder and more expensive to care for them.”
Even women who understand the importance of annual screenings can find it confusing to navigate the system. The city’s health care network is a hodgepodge of public and private hospitals and clinics, with little communication between them and little coordination between supply and demand. “For women in the southland—Ford Heights, Chicago Heights, Harvey, poor areas on the South Side—access to mammography screening sites is really poor,” complains Barbara Akpan, a breast cancer survivor and advocate. “Women are falling through the gap—they don’t know where to go.”
Then there are the logistical hassles that must be overcome. “If you live in Roseland or South Chicago, you may have to travel all day [on public transportation] to get to a place for screening,” says Richard Warnecke, director of the Center for Population Health and Health Disparities at the UIC Cancer Center. Arranging for child care and enduring long waits at overburdened clinics and public hospitals only add to the problem. “If you’re the only income winner for the family, you may not be able to take time off work” for screening or treatment, says Ruta Rao, assistant professor of medicine in the division of hematology and oncology at Rush University Medical Center. “Or you may not be able to find someone to watch your kids.”
At every stage of medical need, from screening to diagnosis to treatment, these challenges accumulate. Having breast surgery may require missing a week of work and spending additional time on follow-up visits; radiation treatment may require daily visits to a medical facility for weeks. Faced with so many barriers, many women fail to follow through with care. At institutions in Chicago that serve low-income women, the rate of loss to follow-up care can run as high as 25 to 30 percent, says Ansell.