n 2008, South Shore resident Cheryl King found a lump in her right breast.
When she told a health professional at a South Side facility, he dismissed it, saying many African-Americans have lumps in their breasts. In the three months it took to get appointments and tests with other professionals to verify it was cancer, it had grown into a stage 2 tumor.
King, 59, is not alone. Racial disparities in breast cancer diagnosis and survival rates may have more to do with neighborhood than race, according to a new University of Illinois at Urbana-Champaign analysis.
The study looked at patients ages 19 to 91 from breast cancer registries in six states, including Illinois. More than 93,600 black women living in big cities from 1980 to 2010 were included in the data set (approximately 14,000 from Chicagoland), which looked at neighborhood racial composition and segregation, poverty rates and access to mammography.
The study found that residential segregation, defined as living in a neighborhood with a predominantly African-American population, significantly increased black women’s rates of late-stage diagnosis and doubled their odds of dying from breast cancer. White women living in predominantly African-American neighborhoods had comparable mortality rates.
“I feel like if I lived on the North Side or closer to Northwestern or Rush, and I would have gone in for a diagnosis, I think they would have taken my concerns more seriously,” King said.
Dr. Zeynep Madak-Erdogan, study co-author and assistant professor of nutrition at the University of Illinois at Urbana-Champaign, agrees. “Residential segregation, coupled with its high correlation to low-socioeconomic status, is keeping certain communities from having access to essential resources which are pertinent for optimal health,” she said.
Chicago’s segregation issues are well-known — a recent report by Apartment List found it to be the 13th most segregated metro area in the U.S. Data from the Center on Society and Health found that those living in less affluent neighborhoods have shorter life expectancies — for example, 69 in segregated Washington Park versus 82 in adjacent Hyde Park.
But not all cities are created equal.
Dr. Anne Marie Murphy, executive director of the Metropolitan Chicago Breast Cancer Task Force, points to New York City, which has relatively low breast cancer disparities and lower death rates for African-American women with breast cancer.
“You can’t really tell me that African-American women in New York are somehow biologically different from African-American women living in Chicago,” she said. “We know that these things are not mainly biological. … There is a segregation of resources (here) in addition to overall segregation.”
The Task Force is a nonprofit that brings together community leaders, advocates and health care providers to address the racial disparity. More than 50 health care institutions throughout the city have either joined or expressed an intent to join.
Breast cancer oncologist Dr. April Swoboda, an assistant professor of medicine at Rush University Medical Center, a Task Force partner, agrees with Murphy, saying biological factors play a role in breast cancer diagnoses despite race or ethnicity, and that environmental factors like access to health care, stress and racism should not be underestimated in the mortality rate disparity between black and white women.
“It’s very much a multifactorial thing. There is so much work that needs to be done. We need to tackle this problem from every angle,” she said.
Valerie Wilmington, a lifelong South Sider who lives in West Pullman, thinks her neighborhood is a detriment to her care. The 61-year-old had a mastectomy of her left breast in 2017 and is undergoing daily radiation treatments until mid-July.
She said that finding a nearby treatment center — where she feels comfortable with the services — is impossible; insurance gets in the way of choosing a facility and physician she feels is worthy of her care; and getting to and from appointments in a reasonable time frame is cumbersome.
She said that although her radiation treatment takes 15 minutes, the assigned transportation to and from the health facility takes hours because of the number of people who have to be picked up and dropped off en route. She said it’s not atypical for her to leave at 9 a.m. and not be home until around 2 or 3 p.m.
“When you’re diagnosed with something so serious as cancer, it should not be where you don’t have the option to go to whatever doctor or hospital that is most comfortable for you, because you don’t have the right type of insurance. You don’t have any options, so you have to go where they can take you — that’s already depressing,” she said. “You have to fight twice as hard to get the help that should be right there for you.”
The Task Force helped Wilmington get to and from appointments and find services covered by her insurance, but the side effects of the treatments (neuropathy in her hands and feet) are having an impact on her ability to work at a food training facility on the West Side.
Since her diagnosis, both her sister and niece (a mother of four in her 30s) have been diagnosed with ovarian cancer. Both South Siders as well, Wilmington is serving as a guide through their cancer journeys.
“Where are the good places here on the Far South Side? Where do you go? You don’t have a lot of options. Cancer is nothing new. So where are the centers?” she said. “Everyone is going where they can, where they can get to for treatment, and you don’t know if you’re getting the best care or not because we don’t have enough options to tell us one is better than another or one specializes in this type of cancer. … We don’t have those types of things.”
According to Task Force data, of the 12 American College of Surgeons Academic Comprehensive Cancer Programs in Chicago, five are on the North Side, three are in the Illinois Medical District, one is in Maywood, and only three are south of the Loop
Dr. David Ansell, senior vice president for community health equity at Rush University Medical Center and author of “The Death Gap: How Inequality Kills,” says that where you live “somewhat dictates when you die and is independent from your beliefs, behaviors and biology.” He cites structural racism as the root cause of residential segregation and subsequent health disparities, such as proximity to a good-quality mammogram.
Ansell said everything from redlining, varying insurance rates by race, a concentration of affluent communities with no low-income housing (limiting mobility for those looking for better opportunities) and a lack of quality health care facilities in predominately black areas — all contribute to the “spider web of reasons” the study rings true.
Madak-Erdogan said she and co-author U. of I. graduate student Brandi Smith hope the study captures the attention of policymakers and urban planners, as well as African-Americans and low-income women who can take a stand and effect the change that is desperately needed.
Illinois legislators passed the Breast Cancer Excellence in Survival and Treatment Act (BEST) in 2015, which will establish a standard level of breast care for every woman in Illinois. But the law has yet to go into effect, according to state Rep. Robyn Gabel, D-Evanston, who is working to get it implemented during the next legislative session.
U.S. Rep. Robin Kelly, D-Matteson, chairwoman of the Congressional Black Caucus Health Braintrust, says she and her colleagues from other communities of color keep pushing for the Health Equity and Accountability Act to reduce racial disparities when it comes to health, but it too has yet to pass.
“It’s more of a comprehensive bill to improve health care access and deliveries to all communities, but especially to communities of color,” Kelly said. “It’s been very difficult to get certain bills passed,” she said. “It’s very unfair, but that’s the truth of the matter. We’ll just keep introducing it until we get it done.”
In addition to legislation, Ansell says building and improving health care facilities in low-income neighborhoods should be part of the solution.
“It isn’t about race, it’s about who is getting exposed in what neighborhood, and by moving it from a biological problem to a structural problem and tying it to quality of care, we were able to demonstrate improved quality of care,” Ansell said. The Task Force says it has reduced breast cancer disparities by 35 percent between the initial study in 2006 and 2014 by enhancing care in existing neighborhood health institutions.
“It’s solvable,” Ansell said. “But unless we actually get to neighborhood redesign and change and address the historical neighborhood segregation that has resulted from racism in the United States, we’ll never get out of this mess.”