Why Are So Many Black Women Dying of Breast Cancer?
How does this bias play out in black lives? African Americans are less likely than whites to receive recommended medications and treatments for illnesses from HIV/AIDS to heart disease to diabetes, even when they have the same insurance. That isn't Ansell's opinion; it's straight from a report by the Institute of Medicine (IOM), a nonprofit established to provide objective healthcare information, often at the direct request of federal agencies and Congress. The bottom line, according to the IOM: There's "strong, but circumstantial, evidence for the role of bias, stereotyping and prejudice" in racial health disparities.
Yet the task force takes heart from the otherwise bleak findings, since the research confirms what they've long believed: that the black-white mortality gap is fixable. Racial disparity can be reduced—and possibly eliminated—when black women with breast cancer get access to the same level of care as white women. "We don't need a magic bullet to fix this," says Patricia Ganz, MD, a member of the Breast Cancer Research Foundation Scientific Advisory Board and professor of medicine and public health at UCLA. "We just need to give black women the same standard of care." All it takes is awareness, manpower, money and buy-in from a city's healthcare community.
That's exactly what the Chicago task force set out to secure, first parsing the city's breast cancer survival statistics to see just how bad the mortality gap was. Then, with significant funding from the Avon Foundation for Women and Susan G. Komen, the grassroots team persuaded 160 healthcare providers across the state to share their data, such as tumor detection rates. The group also identified hospitals with undertrained mammography technicians or radiologists who weren't breast imaging specialists and arranged free continuing education courses. And perhaps most important, they launched their patient navigation program, in which a staff of six fields calls from and gives guidance to more than 1,400 women in need of care every year. Navigators steer their charges to the city's highest-quality medical centers, even if those hospitals are 60 minutes and two bus transfers away; they call doctors' offices to request records or schedule visits and make sure clients get there. In one Chicago institution, the task force observed that women weren't going back to get diagnostic mammograms, Ansell recalls. "So we investigated and learned that the phone number the women were told to call had no one there to pick up." Discoveries like this are what led the task force to partner with hospitals that don't have adequate follow-up programs in place.
It was as a navigator that DeShuna Dickens reached out to Gerri Murrah in May. When a lump in Murrah's right breast became swollen and sore, she'd gone to the emergency room. The doctor didn't even suspect cancer; she was given antibiotics and sent home. When the lump persisted, Murrah, 60, went to a different clinic and requested a mammogram. The results were suspicious, and it was at this point that Murrah's file ended up on Dickens's desk. While the two traded voicemails, Murrah was assigned to a surgeon at a community hospital who made two blunders: Instead of doing a needle biopsy, per National Comprehensive Cancer Network guidelines, he surgically removed the lump—a procedure both costlier and more painful. Then, without even telling Murrah the stage of her breast cancer (it was stage III), he recommended a mastectomy. When Dickens finally got hold of Murrah, she suggested Murrah see a top surgeon at the University of Chicago for a second opinion. There, Murrah learned she didn't need a mastectomy. "DeShuna came in just in time to stop me from having my breast cut off," she says, angry and grateful at the same time.
Daphne Johnson feels equally indebted to the task force. Three years ago, Johnson, now 54, found herself suddenly laid off from her job at Hewlett-Packard. "For the first time since college, I was without insurance, and I didn't know what to do when it was time for my annual mammogram," she says. "A friend told me there were ways to get free screenings, so I called a hospital I'd been to in the past." The hospital gave her the task force's number, and a staffer quickly set Johnson up with a free screening. When the results came back suspicious, Johnson's navigator, Yomaira Molina, arranged for a second mammogram, an ultrasound, and eventually a needle biopsy at the University of Chicago. That test confirmed that the lump in Johnson's right breast was stage II cancer. While Johnson digested the diagnosis and broke the news to her family and friends, Molina took charge, getting her signed up for Medicaid, which covered the rest of her costly cancer treatments. "I'm so grateful to have received such amazing care," says Johnson now, looking robust and relieved after a lumpectomy, radiation, and chemotherapy, sporting a chic close-cropped haircut. "I don't even want to think about what might have happened had I not been connected with the task force."
Johnson and Murrah, who just began chemo herself, are prime examples of the task force's dramatic impact. In just two years—between 2008 and 2010 (the most recent data available)—breast cancer deaths among black women in Chicago fell by an incredible 35 percent. What makes the task force's success even more remarkable is that the programs are so simple: Find women who are falling through the cracks of the healthcare system and connect them with better care.
Now major cities across the U.S. are taking steps to replicate the task force's work. "I sob sometimes when I get off the phone with these women," says Elaine Hare, whose three-person staff at the Memphis-Midsouth chapter of Susan G. Komen helps arrange free mammograms and biopsies for thousands of women. Hare is a founding member of the fledging Memphis Consortium, a group of advocates and public health experts who want to create a task force–like program; in that city, black breast cancer patients are roughly twice as likely to die as whites.
Initial efforts in Memphis—and similar initiatives in Houston, Boston, and Los Angeles—consist of essential baby steps like community research and awareness campaigns. But that doesn't mean advocates aren't dreaming big. On task force director Anne Marie Murphy's wish list: a revised federal Mammogram Quality Standards Act that would hold hospitals and clinics accountable for the quality of their mammograms and their ability to interpret them; bipartisan legislators to champion it; and a law that would require Medicare, Medicaid and insurers in every state to include at least one CoC-accredited program and one ACR Center of Excellence in their network. "It's sad that we even have to ask for this," says Murphy. "These women's lives matter."
Sunny Sea Gold is a health writer living in Portland, Oregon.