In 2008, South Shore-based Cheryl King found a lump in her right breast.
When she told a health expert at a facility in the South Side, he dismissed her and said that many African Americans had bumps in their breasts. In the three months it took to get appointments and tests with other professionals to confirm that it was cancer it had become a stage 2 tumor.
King, 59, is not alone. Racial disparities in the diagnosis and survival of breast cancer may have more to do with neighborhood than with race, according to a new University of Illinois at Urbana-Champaign.
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 major cities between 1980 and 2010 were included in the data (approximately 14,000 from Chicago), which examined the racial composition and segregation of the neighborhood, poverty rates, and access to mammography.
The study found that housing segregation, defined as living in a neighborhood with a predominantly African-American population, significantly increased the rate of late-stage diagnosis in black women and doubled their chances of dying from breast cancer. White women living in predominantly African American neighborhoods had comparable mortality rates.
"I feel like I live on the north side or closer to Northwestern or Rush, and I would have gone to a diagnosis, I think they took my worries more seriously," King said.
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Dr. Zeynep Madak-Erdogan, study co-author and Assistant Professor of Nutrition at the University of Illinois in Urbana-Champaign, agrees. "Segregation of residential areas, coupled with their high correlation with low socio-economic status, discourages certain communities from having access to essential resources that are important for optimal health," she said.
Chicago's segregation problems are well-known – a recent report by Apartment List revealed that it is the 13th most segregated metropolitan area in the US. Data from the Center for Society and Health show, for example, that in less affluent neighborhoods a shorter life expectancy exists, 69 in the secluded Washington Park against 82 in adjacent Hyde Park.
But not all cities are the same.
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 levels and lower mortality rates among African-Americans with breast cancer.
"I can not really say that African American women in New York are anyhow biologically different from African Americans living in Chicago," she said. "We know that these things are not primarily biological … besides the general segregation there is (here) a separation of resources."
The Task Force is a non-profit organization that brings together community leaders, lawyers, and health care providers to tackle racial differences. More than 50 health facilities in the city have either joined or have announced their intention to join.
Breast Cancer – Oncologist Dr. April Swoboda, assistant professor of medicine at Rush University Medical Center, a task force partner, agrees with Murphy that biological factors play a role in breast cancer diagnosis despite race or ethnicity and that environmental factors should include access to health, stress and racism in the discrepancy between black and white women should not be underestimated.
"It's a multifactorial thing, there's so much work to be done, we have to tackle this problem from all sides," she said.
Valerie Wilmington, a lifelong South Sider living in West Pullman, thinks her neighborhood is a disadvantage to her care. The 61-year-old had a left breast mastectomy in 2017 and is treated daily until mid-July.
She said it's impossible to find a nearby treatment center – where she feels comfortable with the services -; the insurance prevents the choice of an institution and a doctor which they consider worthy of care; and it is difficult to get to and from appointments in a reasonable time frame.
She said that although her radiation treatment lasts 15 minutes, the assigned transportation to and from the healthcare facility takes hours, due to the number of people who need to be picked up and dropped off on the way. She said it was not atypical for her to leave at 9 in the morning and come home at 2 or 3.
"If you have something as badly diagnosed as cancer, it should not be where you do not have the opportunity to go to the doctor or hospital that is most convenient for you because you do not have the right kind of insurance. You have no options, so you have to go where they can get you – that's depressing, "she said. "You have to fight twice as hard to get the help that should be there for you."
The task force helped Wilmington find and find appointments and find services covered by their insurance, but the side effects of treatments (neuropathy in their hands and feet) affect their ability to work in a nutrition training facility in the West work page.
Since her diagnosis, both her sister and her niece (a mother of four in her 30s) have been diagnosed with ovarian cancer. Both South Siders, Wilmington also serves as a guide to their cancer travels.
"Where are the good places here on the Far South Side, where are you going, you do not have many options, cancer is not new, where are the centers?" She said. "Everyone goes where he can, where he comes for treatment, and you do not know if you get the best treatment or not because we do not have enough ways to tell ourselves that we're better than others in this way specialized in cancer … we do not have such things. "
According to Task Force data, 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 of community health equity at Rush University Medical Center and author of "The Death Gap: How to Kill Inequality" says that where you live dictates something when you die and regardless of your beliefs, behaviors and biology "He names structural racism as the main cause of residential segregation and the resulting health differences, such as proximity to a good quality mammogram.
Ansell said everything from redlining, varying insurance rates to race, a concentration of wealthy communities without low income housing (limiting mobility for finding better opportunities) and a lack of quality health facilities in predominantly black areas – all contributing to the "spider web the reasons, "the study sounds true.
Madak-Erdogan said she and co-author U of I. Student Brandi Smith hope that the study will attract the attention of politicians and city planners, as well as African-Americans and low-income women, who can take a stand and make the change that's urgent necessary.
Legislators in Illinois passed the Survival and Treatment Act (BEST) Breast Cancer Excellence in 2015, which will set a standard level of breast care for every woman in Illinois. But the law still has to come into force, according to state Rep. Robyn Gabel, D-Evanston, who is working to implement it in the next legislature.
US Representative Robin Kelly, D-Matteson, Chair of the Congressional Black Caucus Health Brain Trust, says she and her peers from other color communities continue to push for the Health Equity and Accountability Act to reduce racial diversity, but also that still has to happen.
"It's more of a comprehensive bill to improve access to health care and deliveries to all communities, but especially to communities of color," said Kelly. "It was very difficult to get certain bills," she said. "It's very unfair, but that's the truth of the matter, we'll introduce it until we make it."
Ansell says that in addition to legislation, the construction and improvement of health facilities in low-income areas should be part of the solution.
"It's not about race, it's about who is exposed in which neighborhood, and by turning it from a biological problem into a structural problem and binding it to the quality of care, we have been able to demonstrate improved quality of care," Ansell said. The Task Force says it has reduced breast cancer disparities by 35 percent between the first study in 2006 and 2014 by improving care in existing neighborhood health facilities.
"It's solvable," Ansell said. "But if we do not really redesign the neighborhood and change the historical racial segregation that has arisen through racism in the United States, we'll never get out of this mess."
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