Local groups counter sub-par cancer care in underserved Chicago communities
At 31, Roshanda Randle of Englewood knew she was younger than most women who develop breast cancer. But it concerned her that three healthcare providers in Chicago told her three different things about the lump in her breast, while saying that she was too young for a mammogram.
Randle, who did not have a regular primary care doctor, had relied on her instincts and pushed for answers at hospital emergency departments throughout the city.
The first emergency medical provider told her the lump was “fatty tissue,” or fat necrosis, a round, firm lump in breast tissue, and the second said it was a cyst, a fluid-filled sac. A third told Randle she had an infection in her breast and prescribed an antibiotic.
Recognizing that the lump was getting bigger, Randle sought a fourth medical opinion at yet another Chicago hospital emergency department.
“At first, I didn’t think they were going to let me in to see a doctor. I started crying and saying nobody is listening to me. The young lady at the front desk said she’d get me back to see a doctor,” Randle recalls. The attending physician ordered a mammogram and ultrasound.
Following the test, Randle returned home. An hour later, the doctor called and said, “This is serious. You need to have a biopsy.” A biopsy confirmed Randle’s instincts: She had breast cancer.
“I can’t say I was shocked. My mother was treated for stage 4 breast cancer and now has cancer in her bones,” says Randle, who was diagnosed with stage 2 breast cancer. Randle underwent a mastectomy and chemotherapy and still faces radiation therapy.
What Randle, who is Black, had to go through before being diagnosed with a disease that claims the lives of more than 42,000 U.S. women each year, is an example of what Chicago healthcare providers and community leaders say they are working to eliminate in communities of color — sub-par cancer care, or lack of care altogether, due to years of systemic racism resulting in healthcare inequities.
Equity in healthcare means that each person is able to reach their full health potential, without limitations due to economic stability, healthcare access, education, or neighborhood environment.
Yet, there remain stark health inequities in communities of color. And these show up in lower life expectancies and higher rates of disability and death associated with diseases like cancer.
At first, I didn’t think they were going to let me in to see a doctor. I started crying and saying nobody is listening to me.”
For example, while people of all backgrounds develop cancer, Black people have the highest mortality rate of any racial and ethnic group for all cancers combined, according to the U.S. Department of Health and Human Services’ Office of Minority Health. Black people also have the highest mortality rate for most major cancers individually.
The Metropolitan Chicago Breast Cancer Task Force — developed and housed at Rush University Medical Center — was established in 2008 as a response to research showing that between 2005 and 2007, Black women in Chicago died of breast cancer at a rate 62% higher than white women. Within a decade, the figure dropped to 39% through a comprehensive approach to improve the quality of breast cancer diagnosis and treatment in underserved areas of the city, says Anne Marie Murphy, PhD, the group’s executive director.
Building on this success, in November 2019, the task force changed its name to Equal Hope and expanded its mission to address other women’s cancers, “because all women should have equal hope of high-quality women’s healthcare, and anyone facing serious illness should have equal hope for their future,” Murphy says.
Research and trust
When trying to address inequities in cancer care, there is the issue of trust, says Chicago mental health counselor Detrall Dearbone, a Black military veteran. Many Black people have grown up hearing about unethical research, she says.
Their medical distrust traces to many exploitative incidents, such as medical schools stealing Black corpses to use as cadavers — a practice that continued from the late 1700s to the early 1900s — and the U.S. government’s research that denied Black men syphilis treatment so researchers could see how the disease progressed, an experiment that ran from 1932 to 1972.
Dearbone, who underwent treatment for breast cancer in 2011 and experienced a recurrence in 2020, says she has no complaints about the medical care she receives as a U.S. military veteran. “But I know there are many health inequities that people of color face,” she says.
She says solutions include conversations to help people of color gain — and maintain — trust in the medical profession and to encourage them to volunteer for clinical tests for cancer-treating drugs. “I want to tell them to not be afraid,” Dearbone says.
For generations of Black men, Black-owned barbershops have been places for haircuts and intimate conversations, says Karriem S. Watson, DHSc, MPH.
Now those conversations are turning to healthcare. In Chicago and across the country, Black barbers and beauticians are informing clients about cancer prevention and treatment, Covid-19, and other illnesses through public health partnerships, says Watson, who is associate director of community outreach and engagement for the University of Illinois Cancer Center and associate executive director of the Mile Square Health Center, a group of federally qualified health clinics.
In addition to Black barbershops, churches, and community centers, it’s important to spread cancer education to younger Black men and those of diverse sexual orientations in spots like recreational centers, gyms, bars, stores, restaurants, homes, and on the street, according to a 2016 article in the Journal of Community Health.
Educational outreach to boost awareness and encourage medical checkups and cancer screenings involves reaching out to people in a way that is effective for them, says Joanne Glenn, RN, a registered nurse who volunteers as a patient advocate with the University of Illinois Cancer Center’s patient brigade.
“It doesn’t work to treat everybody with the same cookie-cutter approach. We need to meet people where they are,” Glenn says.
Early and often
“Early detection is so important when treating cancer,” says Pam Khosla, MD, associate professor of medicine and chief of the division of hematology-oncology at Sinai Chicago. The earlier the detection, the less likely for cancer to spread, she says.
But early detection doesn’t always happen. If underserved communities have decreased access to affordable, quality healthcare, cancer can be missed, as Randle’s story shows. Yet, outreach groups make a difference.
When preparing for the biopsy that revealed she had breast cancer, Randle signed paperwork that allowed her contact information to be shared with agencies that could provide her assistance on the medical road ahead. One of those agencies was Equal Hope.
An Equal Hope patient navigator made appointments for Randle and followed up with her. Perhaps most importantly, the navigator helped Randle remain hopeful. “I was just so tired and didn’t have the energy,” Randle recalls. “She told me she was not going to let me give up.”
That follow-through made the difference as Randle underwent a mastectomy and chemotherapy, while her mother was being treated for metastasized cancer that had spread to her bones.
Randle says she looks forward to good health, a job, and quality time with her 13-year-old son after her radiation treatment is finally finished.
While there is quite a distance to go — for Randle and for Chicago communities of color — local health institutions and community groups have pledged to do their part to reduce cancer care inequities in Chicago.