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Roughly 90 percent of white women with breast cancer will survive five years after diagnosis. Only 79 percent of black women will. But even as the mortality gap persists, a small army of passionate advocates are proving this is a failure we can avoid. Sunny Sea Gold reports.
In a quiet little cubicle tucked inside a boxy glass building in Chicago’s medical district, a tall young woman in a long skirt and a white nursing coat picks up the phone. “Hi, this is DeShuna Dickens calling on behalf of South Shore Hospital about your mammogram results,” she says in a practiced, even tone. “The radiologist is recommending you come back for additional testing. Have you had a chance to make an appointment?” Dickens listens as the patient on the other end explains why she hasn’t followed up—some women never received their initial test results in the mail; others said they’ve been too busy—then offers to help arrange further testing. When the conversation ends, she makes a few detailed notes in her files, then moves on to the next patient in her stack.
Illustration: Rebekka Dunlap
By Sunny Sea Gold
Dickens barely looks old enough to have earned two master’s degrees (one in public health, the other in nursing)—and she certainly doesn’t look weary enough to have been doing this job for more than a year: Every day she spends hours making calls just like this one, imploring women to follow up with their doctor and explaining the process of managing their care. She helps them schedule appointments, change doctors and wade through insurance issues. Occasionally, she even goes to doctors’ visits with those who need extra support. “I recently worked with one woman who was so scared and overwhelmed that I offered to go with her to her biopsy,” Dickens tells me on a sunny summer morning. “It helps to have someone there who can understand the terminology and make sure you are clear on the treatment plan.”
Dickens does this on behalf of three community hospitals in Chicago that, for one reason or another, lack the resources to do their own follow-up with all their at-risk patients. “One hospital I work with had a binder of at least 75 women with suspicious or incomplete test results, going back as far as 2012,” Dickens says. “Women in some communities are falling through the cracks.”
But it’s not just “some” communities—specifically, it’s black communities. Right now in America, black women are about 40 percent likelier to die from breast cancer than white women, despite the fact that they’re less likely to get the disease in the first place. That translates to an estimated 1,710 black women each year, according to groundbreaking research released in 2014 by the Sinai Urban Health Institute and the Avon Foundation Breast Cancer Crusade. And the study found that between 1990 and 2009, in cities from Memphis to Los Angeles, the black-white survival gap actually grew. Thirty years ago, black and white women died of breast cancer at about the same rate, but as treatment and screenings improved, more white women survived the disease while the death rate among black women stayed stubbornly higher. “It’s disgraceful how many black women are dying unnecessarily,” says Anne Marie Murphy, PhD, former director of healthcare initiatives for the Illinois governor. In 2007, a group of doctors, researchers, and community activists in Chicago, alarmed by the trend, launched the Metropolitan Chicago Breast Cancer Task Force, an independent research and advocacy group that focuses exclusively on eradicating racial disparities in breast cancer. (Murphy is its executive director.) They wanted answers: Why the deadly gap? And what to do about it? Initially, some experts wrote them off, believing the mortality gap to be rooted in biological differences and therefore largely insoluble. But while it’s true that African American women have higher rates of aggressive breast tumors known as triple-negative (for which there are no targeted treatments) and a higher prevalence of some breast cancer–related gene mutations, those differences don’t account for the sheer size of the problem, says David Ansell, MD, a senior vice president at Rush University Medical Center in Chicago and cofounder of the task force. In fact, the overall breast cancer incidence among black women is nearly 4 percentage points lower than in white women. Nor does biology explain the geographic variance in death rates, even between cities in the same state. (While black and white breast cancer patients in Sacramento fare about the same, black women in Los Angeles are 71 percent more likely to die than white women, according to the Sinai/Avon study.)
Others questioned whether the problem isn’t so much a race issue as a matter of socioeconomics—those with more money survive while those with less die. The truth, according to many experts I spoke with, is that racial health disparities are attributed to biology, poverty, and race—specifically, America’s legacy of racial segregation. In predominantly black Chicago neighborhoods, not a single hospital or clinic has earned the American College of Radiology’s Breast Imaging Center of Excellence seal of approval, and only one carries Commission on Cancer (CoC) accreditation from the American College of Surgeons. Nonaccredited treatment centers typically use older equipment, employ fewer breast imaging specialists, and miss more incidences of cancer than hospitals like Rush and University of Chicago, both of which are accredited and are located in whiter neighborhoods. Breast imaging specialists—radiologists who spend a majority of their time reading mammograms and often have specialized training—are almost twice as likely as general radiologists to pinpoint cancer in a mammogram. In other words, even if women of color do all the right things—go for routine testing, schedule follow-up appointments—they can still fare worse than white women simply by virtue of where they live.
As screenings and treatments for breast cancer improved in the United States, a gap in care developed.
Before Provident Hospital of Cook County—a public treatment facility that serves a majority black population—stopped offering mammograms in June, the conditions in its mammography unit were deplorable. I saw a photo of a manhole cover—which I’m told had an active sewer running beneath it—smack in the middle of the room where technicians read mammography films. The fumes were reportedly so strong at times that staffers had to wear surgical masks. (A rep for Provident Hospital admits that sewer fumes are known to be a problem in the building and says plans for a new state-of-the-art mammography center are under way.) “All you have to do is look at some of these neighborhood hospitals to know how different they are from the large, well-funded ones,” says Teena Francois-Blue, the task force’s associate director of community health initiatives and research.
Read more: O Magazine