Louise Tatum did what most women do when they find a lump in their breast –– she scheduled a mammogram.
But Tatum had problems with her community hospital from the start: unreliably scheduled appointments, missing mammogram records, lost biopsy records.
The bureaucratic troubles mounted while 47-year-old Tatum waited and feared the worst.
“I was in a panic,” said Tatum, who lives near Altgeld Gardens on the Far South Side. “I didn’t know what would happen to me.”
Her story doesn’t surprise Anne Marie Murphy, the executive director of the Metropolitan Chicago Breast Cancer Task Force. It’s a typical one African-American women in Chicago face, particularly for those who are low-income or uninsured, Murphy said. But it’s also one on the cusp of change.
Chicago is leading the nation in closing the disparity in breast cancer mortality rates between African-American and white women, an accomplishment announced last year with much fanfare.
From 2006 to 2013, a 2017 study published in Cancer Causes & Control showed that the mortality rate from breast cancer among black women dropped by 13.9 percent, driving it below the national average.
The results were so dramatic that the Chicago Department of Public Health gave the Murphy’s group and its partners –– Cook County Health and Hospital System; Rush University Medical Center; Mile Square Health Center; Sinai Health System and Centro Comunitario Juan Diego –– $700,000 to expand their model, which had been credited nationally for the success. The task force is housed at Rush.
Overall, the goal is to take aim at what experts call structural inequities in the quality of care black women receive.
For example, many African-American women have access to community hospitals rather than comprehensive care centers, which offer streamlined services others take for granted.
At a community hospital, a woman may be able to get a mammogram, but she is likely to be referred to one or more other offices for diagnostic tests and treatment. Imaging tests are often read by radiology generalists rather than breast specialists. Often, Murphy said, women at community hospitals may be treated with outdated and unnecessary procedures, such as mastectomies rather than lumpectomies. Many often don’t even get to their initial appointments because they cannot figure out the insurance system.
“Think of it as ‘some people get good stuff and some people don’t,’” Murphy explained.
Even so, in the past year, Chicago has made headway. Vida Henderson, a research scientist at the University of Illinois Hospital and Health System, said they have screened 511 women, and of those, seven were diagnosed with breast cancer. Six of those women were uninsured.
To be sure, the gap in the number of deaths from breast cancer between Chicago’s black and white women has not been eliminated, although for those 65 and older, it has come close. The mortality gap for black and white women ages 40 to 49 is 93 percent, and for those under 40, a startling 157 percent gap, Murphy and other experts said.
The average age of the women they see is 52, she added. The youngest is 26; the oldest, 78.
And it’s those younger women –– women like Tatum –– the task force is now focusing on. The mortality rate for young black women is high for a variety of reasons, including hormones, obesity and familial risk. However, the latest guidelines for mammograms recommend women don’t start getting them until age 50 and to repeat them every two years.
“Those guidelines just don’t apply to young African-American women,” said Dana Wint, a spokeswoman with the Metropolitan Chicago Breast Cancer Task Force. So it’s imperative to get the word out to them, she added.
The task force’s model relies on community outreach and on patient navigators to reduce those inequities. Representatives, for example, attend public meetings and events to spread the news of the services the task force offers.
That’s how Tiffany Johnson, 42, got her first mammogram –– and learned her lump was benign. Johnson, of Auburn Gresham walked up to a table of friendly women at an African festival, she said, and the women, who worked for the task force, persuaded her to take care of her health.
“I never would have done anything on my own,” she said.
Navigators usher women through the entire process, including screening, diagnostics, treatment and survivorship, and connects women to services they need. They will make appointments, pick up records, drive women to appointments. They educate women about the disease, treatment and options, and will refer them to therapy and other social services. Sometimes, the best thing they can do is sit and listen.
Retha Cooper, 74, often finds herself doing just that, despite her caseload of 170 women. She’s also been assigned to assist Tatum, who was recently diagnosed with Stage I to Stage II cancer.
“Well, I describe it as making sure the client is not there by herself,” Cooper said.
But for Tatum, who nearly missed getting a diagnosis had it not been for the task force, the navigator role is far more important than that.
Cooper taught her what to ask doctors and helped her learn medical terms. She has escorted her to an MRI appointment and even took Tatum shopping to buy household items to keep her home germ-free while she undergoes radiation therapy.
“She’s been a great spirit and the one person right by my side right now,” Tatum said.
With two years left on the grant, there’s a lot of work still to be done, Murphy said, yet they are confident the efforts will continue to save lives.
“Too often the story about Chicago is dark –– lives lost, the violence that exists in some parts of Chicago. Hower there are bright lights shining, and one is the reduction in breast cancer rates for African-American women, and it’s something the city can be proud of.”
Uninsured women who need a mammogram can call the Metropolitan Chicago Breast Cancer Task Force for help at 312-942-3368.