Cancer, like so many other things in the United States, is not a product of equality.
Black women in the U.S. get 6 percent less cancers, overall, than white women, but have a 14 percent higher rate of cancer deaths. In breast cancer, this racial disparity is further widening. From 2008 to 2012, breast cancer death rates were 42 percent higher for black women compared to white women.
Breast cancers in black women are more likely to be diagnosed when they are more advanced and may be more likely to spread. More black women than white have "triple-negative" (TNBC), a problematic breast cancer to treat as it lacks the biological "targets" of ER or HER2 found on other sub-types, which can be attacked with specific drugs, like tamoxifen and herceptin.
But Otis Brawley, chief medical officer of the American Cancer Society, feels that, while the TNBC issue is important, it's often overstated. (TNBC is found in 30 percent of black, and 18 percent of white, women with breast cancer.) The biggest disparity, he says, is actually seen in the relatively easily treatable ER-positive form of the disease, which depends on a protein (ER) that can be selectively attacked with effective drugs. Why, then, is a relatively treatable form of breast cancer causing such a spike in black female mortality?
"As cancers become more amenable the treatment disparities grow, because some people get treatment and some people don't," says Anne Marie Murphy, executive director of the Metropolitan Chicago Breast Cancer Task Force, a not-for-profit organization dedicated to the fight against breast cancer inequalities in Metropolitan Chicago. But a study published in 2017 suggests that Chicago—where socioeconomic disparities in outcomes can be exorbitant—has flipped its own trend, as the once widening gap between white and black breast cancer survival is now narrowing.
In 2003, the death rate for black women with breast cancer in Chicago was 68 percent higher than their white neighbors, a rate significantly higher than any other major metropolitan city in the U.S. Yet at the same time, in a controlled environment—for example, among employees of the Department of Defense—black and white women's outcomes become very similar.
Brawley attributes some of the lack of disparity in outcomes to the fact that a woman (or her partner) who has served 20 or more years in the military, including performing several tours of duty overseas, has health insurance as well as the cultural skills to get the care she needs.
"She is less intimidated by the big hospital than a black woman from the south side of Chicago," Brawley says. Navigating underserved patients through the system, he adds, goes a long way toward helping people get treatment, and be more comfortable in the system.
Similarly, a middle-class woman is likely to have a mammogram at a dedicated breast center, where the radiographer will usually specialize, and keep his or her skills tightly focused by reading 60 to 80 mammograms a day. She will have the result by the time she gets dressed, and any more tests required will be done before she goes home. A poorer woman will likely be seen in a busy place that can't afford the luxury of specialist staff, will get her results days later, and further tests will require another visit, which may be precluded by precarious employment, or other issues like childcare.
This is where patient navigation is helping change outcomes in Chicago. Navigators who work with the MCBCTF help guide patients through the arduous process of managing their diagnosis while also advocating for their care. Since launching in 2007 to address the severe disparity in outcomes between black and white women, patient navigation has become a vital resource in closing the care gap.
Navigator programs have been successful at removing some barriers to care, including employment, housing, and marital status. But there isn't a national framework outlining best practices for navigator recruitment and training, and one study found that navigated patients who were eligible for a medical treatment known as anti-estrogen therapy were more likely to receive it than non-navigated patients, but navigated patients eligible for radiation therapy were not more likely to receive it, suggesting that outcomes may vary even despite having a navigator by a patient's side.
The MCBCTF navigators are experienced, trained according to comprehensive protocols, and stay with their patients all the way through their cancer journey, with the help of a sophisticated database. They have one oncology nurse navigator, but for the most part are well-trained laypeople.
"They look like the communities that they serve," says Murphy, referring to African-American and bilingual Spanish-speaking members of the navigation team. "It is important that women feel comfortable with whoever it is that is navigating with them."
It seems as if that attention to training and diversity has paid off. MCBCTF's study, started shortly after the group launched its navigation program, found that, in measuring two periods of time—1999 through 2005 and 2006 through 2013—the mortality rate of breast cancer for black women in Chicago dropped by almost 14 percent, compared to only 7 percent for white women. More dramatically, a 51 percent disparity in outcomes from 1999 through 2005 shrank to 41 percent. Those numbers dropped Chicago, which once outpaced the U.S. in mortality rates, below the national average. In the same period of time, mortality rates in other cities with significant African-American populations held constant or grew.
Navigation is perhaps the most visible aspect of the MCBCTF, though not the group's only initiative. It started as an advocacy group, and an effort to monitor and improve the quality of breast cancer screening and care for lower-income women.
"Chicago is the most segregated city in the U.S. Resources are not distributed equally," Murphy says. In addition to navigation, the MCBCTF has worked over the past decade to measure the Chicago health-care landscape and outcomes to identify where inequities begin in high-quality care. It's also put together policy to address the shortcomings in coverage and improve access to comprehensive care. "It's easy to do a navigation program, but if you don't address the differentials in quality, and the differences in accessing comprehensive care, then I'm not sure that you've done everybody as big a service as you could," Murphy says.
Cancer brings a burden of vulnerability to everyone, but in an unequal world, women and members of minority groups can have extra cause to be anxious. To have to remove your clothes and expose your breasts to a member of a medical establishment your ancestors could not trust can be difficult. Research in 2009 involving hundreds of Chicago women identified a wide mistrust of the medical establishment, and, this year, the American Society of Clinical Oncology launched a strategy to tackle the lack of diversity in the oncology workforce, where only 2.3 percent of cancer specialist doctors self-identify as black.
While it's impossible to identify a single reason that Chicago was able to reverse its trend, one thing is certain: The current focus on quality care as opposed to just care can already make a demonstrable difference in outcomes.