Fifth annual American Cancer Society 5K Walk to raise funds to fight breast cancer, Oct. 28, 2001, in Pasadena, Calif.
David McNew/Getty Images

In September 2012, Sabrina Fields was in the middle of one of those moments where everything—work, love life, family, future—seemed to be assured. Even ideal.

Then 32, Fields had just finished a master’s degree while working full time. She was a highly valued employee in the finance division of the U.S. Department of Homeland Security. Her cohort of friends, including a twin sister, often turned to her for advice, and the man she loved had just proposed. It seemed like the right time to reward herself with a weekend trip to homecoming at her alma mater, Hampton University.

She bought a new dress for the occasion and then set out on the obligatory search for the elusive, perfect strapless bra—something both pretty and capable of maintaining order. A self-described curvy girl, Fields walked into one of those lingerie shops where the staff know women’s figures, the help comes inside the dressing room and it is very hands-on.

“We were in the dressing room, and the saleswoman just kind of casually mentioned my left breast seemed larger than my right,” says Fields. “She said that’s perfectly normal. But in the back of my mind I remember saying, ‘Let me monitor this. Something may be really wrong.’”

That turned out to be a fateful conversation.

In the United States, the once-dense fog of shame and silence around breast cancer has given way to a sort of well-known narrative. A woman—frequently white, usually age 50 or older—discovers a lump and fears that the growth is cancer and potentially a death sentence. Then there’s a diagnosis and an often grueling course of treatment for breast cancer, which, if caught early, has one of cancer’s highest survival rates.

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Then—in one version of the familiar story—there is the victory lap taken by a woman who stared down, battled or somehow bested cancer.

But in reality, breast cancer can develop in different forms and present an array of symptoms and—depending on when the disease is detected and how it is treated—a list of factors too long and sometimes too mysterious to quantify, which can still claim some women’s lives. And it’s a disease with which white women are far more likely to be diagnosed, but from which black women are far more likely to die.

Racial Survival Gap

In December 2013, the New York Times turned its spotlight on Memphis, Tenn., laying bare the story of a community where some combination of poverty, limited access to health care, cultural barriers, fear and superstition combines to create the largest racial breast-cancer-survival gap in the entire country.

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In Memphis between 2005 and 2007, the period during which a Chicago-based Sinai Urban Health Institute study examined the racial survival gap (pdf), the white breast-cancer death rate sat around 21 percent. By comparison, about 45 percent of black women (pdf) diagnosed with the disease in Memphis died. Across the country, black women are 40 percent less likely than their white counterparts to survive, according to National Cancer Institute data.

The same year Fields made her discovery, over the holiday season she watched her breast continue to swell. It grew warm to the touch. The texture of her nipple took on the quality of pebbled leather, and a thick layer of skin at the bottom of her breast began to protrude. By the time she was able to get an appointment with her doctor early the next year—a meeting during which she had initially planned to discuss her post-wedding plans to conceive—her doctor was alarmed. And a few days later she received the diagnosis: stage 3, inflammatory breast cancer. Stage 4 is often terminal.

“Of course I wondered, ‘Why is this happening to me?’ I believe in karma,” Fields says, “so, it was like, ‘What did I do to deserve this?’ I’m barely 30. I wasn’t prepared to die.”

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Because the racial survival gap is a problem so acute and seemingly intractable—it has widened since the 1970s—some women’s health-advocacy organizations have begun to describe it not only as a medical issue but as a pressing social-justice issue as well.

And earlier this month, U.S. Department of Health and Human Services Secretary Kathleen Sebelius unveiled a policy change heralded by the Susan G. Komen Foundation—the nation’s largest private nonprofit raising funds for breast-cancer research—as part of the effort to reduce breast cancer’s annual human toll, some 40,000 lives.

Under the terms of the Affordable Care Act, better known as Obamacare, health insurance companies will now be required to provide access to women at high risk of breast cancer, free of charge, to a pair of drugs that Sebelius described as capable of preventing some from developing the disease.

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However, the types of fast-growing and often virulent forms of cancer more common among black women and younger women of all races—inflammatory and triple-negative breast cancers—don’t adequately respond to these drugs, so when it comes to narrowing the racial survival gap, the change isn’t likely to be a game changer.

“Any opportunities to make a drug readily available is an important gain for women’s health,” says Valerie Rochester, director of programs and training at the Washington, D.C.-based Black Women’s Health Imperative. “However, as wonderful as this news is, for many black women—the group most likely to die from this disease—there will be no benefit.”

That’s a difficult projection, given the politics around Obamacare and what many women and minority health care advocates, including the women at the Black Women's Health Imperative, say the Affordable Care Act will do to narrow a myriad of racial health disparities. The HHS announcement, according to three women’s health-advocacy organizations contacted by The Root, will have little impact on the long and rarely explored list of reasons that a disproportionate share of black women continue to die.

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“The breast-cancer survival gap is really racism at its best,” says Black Women’s Health Imperative President and CEO Eleanor Hinton Hoytt. “It is a failure to be accountable to a population that is suffering most, to be responsive to a disturbing reality and treat patients and their risk equally.”

Across the country, there is ample evidence that black patients—including those with the same education, insurance and income as their white counterparts—frequently receive lower-quality health care, including fewer diagnostic tests and less medication to relieve pain.

And there are often significant structural barriers to better care. In Chicago, for example, in 2007 the kind of mammography machines known to detect smaller tumors sooner than others—and tumors inside the harder-to-read, “dense” breast tissue more common to black women and women under 40—all sat outside the city lines. None of these facilities was easily accessible via the city’s public transportation routes. So black women in that city weren’t just failing to get the annual mammograms that the nation’s official (age 50) and unofficial cancer-prevention guidelines (age 40) suggest. Many black women weren’t getting the right kind of care at all.

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In Chicago, between 2005 and 2007, about 23 percent of white women died within five years of a breast-cancer diagnosis, compared with nearly 38 percent of black women.

“If you really want to understand the survival gap,” Hinton Hoytt says, “you have to be ready to talk about quality of care, access to care, the willingness of patients to receive care, and you have to be willing to look at the real causes and implications of something as complex as residential-segregation patterns.”

For instance, while a family history of breast cancer seems to be highly predictive of breast-cancer risk among white women, many black women have no family history of breast cancer.

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Environmental and lifestyle factors may play a bigger role for black women,” says Rochester. “And that is something we are only beginning to [see] a focus of attention in the research world.” According to her and others, boosting funding for research is critical to reducing the number of people diagnosed and improving survival rates, particularly among minority communities, as outlined by a 2013 report (pdf) released by the Interagency Breast Cancer and Environmental Research Coordinating Committee.

“Determined to Do What She Could”

In Sabrina Fields’ case, her own proactivity was key.

Now 33, she isn’t one of those women who waited to see a doctor out of fear. She went as soon as she could. She’s both practical and has health insurance and a job. When she revealed that she was ill, just after accepting a new post at the Department of Defense, her supervisor reassured her that she was still the candidate they wanted.

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She’s also such a strong proponent of the proactive approach to health care that she overruled her fiance’s request that she get a second opinion and started treatment for her fast-growing form of breast cancer right away.

The plan: chemotherapy, followed by a double mastectomy (surgical removal of both breasts), radiation and genetic testing to see if she and her family members carry a mutation that puts them at greater risk for the disease and, finally, breast reconstruction. 

Fields was so determined to do what she could to eradicate cancer from her body and her life—and then move on—that she strongly recommended to her twin sister that she undergo an elective mastectomy if the genetic test found a mutation. That test was negative. And Fields’ doctor found a drug that protected her eggs, ovaries and chance to someday have babies.

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“I certainly wish the form of breast cancer I had was better understood,” she says, “and that the information young women need to understand [that] this disease can affect them, and what … if anything, they can do to avoid it, was more widely available. Right now, I’m not sure any of that is there.”

Now, just over two years since she was diagnosed, she’s preparing to complete treatment in March. And in October—God and wedding budget willing, Fields says—she will be walking down the aisle.

Janell Ross is a reporter in New York who covers political and economic issues. She is working on a book about race, economic inequality and the recession, due to be published by Beacon Press next year. Follow her on Twitter.