Meeting highlights progress, hurdles black women with breast cancer face
This article first appeared in the St. Louis Beacon, July 15, 2013: Sandra Garrett knew something had gone wrong inside her body a decade ago when her left hand became limp, falling from her chin and sliding down her chest. She later found a lump on her left breast and “had no idea how long it had been there.”
Lacking health insurance but feeling no pain, Garrett, now 54, put off seeking medical attention. But after she did seek care through a health center, she ran into delays at the health center, causing her to have to wait more than six months before she eventually got first-rate treatment at the Siteman Cancer Center at Barnes-Jewish Hospital.
One thing support groups didn’t discuss with her, she says, is depression. “They really don’t touch on that part of it.” But she praises the assistance she got from Siteman while saying she was clueless about resources most of the time. “I didn’t know where to turn or what plan of action to take.”
About a year after Garrett’s experience, Patricia Speed, now 62, suspected she might have breast cancer after she found a lump during her monthly self-examination. In no time following her diagnosis, an oncologist, a radiologist and a nurse practitioner were walking her through her treatment at Siteman. Speed’s uplifting message is: “Cancer is a scary thing, but so many women have survived. If you listen to your body and examine yourself once a month like you should, you’ll find it’s not a death sentence.”
The experiences of the two women, shared during a town hall meeting this past Saturday, held at People's Health Center on Delmar near DeBaliviere, underscored both the ease and the hurdles for African Americans seeking treatment for breast cancer. The women are participants in the St. Louis Komen Project, headed by Sarah Gehlert, a professor at Washington University in St. Louis.
While pleased with the progress being made in improving breast care for minority women, Gehlert said, "It's important not to rest on our laurels, but to focus on all that still needs to be accomplished."
Her research, funded by the the Susan G. Komen group, has included in-depth interviews with about 100 breast cancer survivors from several ZIP codes with high concentrations of cancer in parts of in north St. Louis and Jennings. The area included 900 women diagnosed with breast cancer between 2000 and 2008. Gehlert’s study seeks to determine where the women were diagnosed and treated and pinpoint every conceivable hurdle that might have thwarted their search or desire for medical care and other resources for breast cancer.
Answering those questions, Gehlert reasons, can improve care and offer ways to eliminate black-white cancer disparities. Her research team opened an office on the north side. Part of programs there now include tutoring for youngsters by students from Washington University.
The news at Saturday’s town hall session wasn’t all bad. A St. Louis Regional Health Commission report notes a 30 percent decrease in local breast cancer deaths among local black women in the high mortality ZIP codes. The drop is attributed in part to work by several local organizations, even though barriers still are a big worry. Still, much more work has to be done on disparities. Near the end of the meeting, smaller groups held brainstorming sessions to highlight things needed to be done to improve services for those living with breast cancer.
The top barrier, most agree, is lack of health insurance. Others include poor coordination between clinics and specialists, poor communication between providers and patients, and lack of knowledge about services among some cancer victims.
“Connecting community health centers with specialty care is key,” Gehlert says. “We have fought really hard in the region to do that, and it may have contributed to some of the decrease in rates of breast cancer.”
What frustrates her the most, she says, is that “some women have lost hope because they don’t have one resource that they can access for care, whether it’s due to (lack of) money or insurance.”
While some of the black-white gap in cancer deaths has eased in St. Louis, Gehlert says the gap “is still too high” for black women. That gap is the main reason black women are the focus of Komen-funded projects. The Centers for Disease Control and Prevention says the mortality rate for these women nationally is about 40 percent higher than for white women -- even though the incidence of breast cancer is higher among whites.
Still, Robert Fruend, head of the Regional Health Commission, says it’s worth calling attention to improvements shown by local data, which show that “you’re more likely to die of breast cancer if you are a white women in the county than if you are a black woman in the city.”
He’s not suggesting “everything is perfect,” but he’s impressed by local efforts and he shakes his head, saddened by the time it took Garrett years ago to get a diagnosis and treatment. “That’s not right; it should take days or weeks,” he says, reinforcing his point with a family experience.
“When my wife got breast cancer, she went from knowing something was wrong with her breast to the biopsy, to chemo flowing in her blood within two weeks. That should be the standard for everybody, regardless of what they look like, regardless of what their job is, and regardless of what insurance they happen to have or not.”
The local effort to reduce breast cancer disparities has involved several local groups and programs. At the top of the list is Siteman, where Susan Kraenzle manages the breast health center, the mammography program, and the program for underserved women.
“When I got into this about 10 years ago, there wasn’t a whole lot going on in reaching our underserved people to tell them they needed to have these services because women are dying.”
A “huge call to action” came, she says, with the finding of “these huge clusters of late-stage breast cancer in north St. Louis city and north St. Louis County. That was my first month on the job in 2004.”
While the programs are making headway, she concedes that what’s being done still is not enough. “It’s hard to tell women to get a mammogram when you can’t pay your bills, can’t feed your kids. That moves the mammogram to the bottom of the list. But the way we look at it is to say, ‘OK, we know it’s at the bottom, but let’s move it to the top. Get it done and you have it checked off, and we’ll help you get the rest of it done.’ ”
Siteman’s partners include the St. Louis Integrated Health Network, a collection of health centers that have focused on quicker diagnoses and treatment to reduce experiences like those that Garrett encountered years earlier. The health network is part of a Siteman-funded Program for Eliminaton of Cancer Disparity or PECaD. Among those assisting with this effort is Dr. Heidi B. Miller, a physician at Family Care Health Centers. One of the big challenges, she says, is allaying the fear among those needing treatment.
“I provide breast health care to my patients within the exam room and try to reduce barriers to care for referrals for a breast surgeon or breast radiology studies regionally. The two most essential ingredients to rapid, smooth, and compassionate breast care are a breast health navigator and a means to cover the expense of breast care.”
She calls breast health navigators her heroes because they “weave our patients through a patchwork of financial resources, but the path is inevitably more difficult and potentially tragic with the lack of health insurance.” She believes expansion of Medicaid is essential for women's health, for rapid detection of breast cancer, and for addressing other problems, such as depression, that plague women with breast cancer.
Just as important has been Siteman’s partnership with groups like the Breakfast Club, which is the brainchild of Sherill Jackson, a 21-year breast cancer survivor and a pediatric nurse practitioner at the People’s Health Centers. She and two other women started the club 15 years ago and have helped it grow into a major force to help address breast cancer.
“When women are newly diagnosed, we follow them up to nine months through their breast cancer journey,” Jackson says. Club activities include arranging for mammography vans to visit churches in north city and north county, hosting speakers, and sponsoring a seminars, including one in December for breast cancer survivors and their families.
Like others, Jackson says there is no way of getting around some remaining barriers women still face in “navigating the system and the fear of not having health insurance. We’ve made improvements. But we can’t stop. It’s not that women can’t get care. But we want to help them get it sooner.”
Genies Jordan, a community liaison officer at the St. Louis County Health Department, says the challenges go beyond helping the cancer victims. She is learning, she says, that services are needed to help accommodate children and grandchildren affected by caretakers who end up coping with breast cancer.
“Some are grandparents who have picked up another generation of children to raise,” Jordan says. “If the grandparent has cancer and needs to take care of herself, who is going to take care of the grandkids? There still are a whole bunch of challenges for women who have cancer.”