Bridging the Divide

When African-American women die from breast cancer at a higher rate than other women, area advocates ask: What will end the disparity?

By Meagan Parrish
Photographed by David Watkins and David King

Twenty years ago, WillieMae Conklin needed encouragement. Although she had found a small lump in her breast, she was convinced it was nothing.

Her boyfriend thought otherwise. He urged Conklin to see a doctor and when she didn’t comply, family members joined the chorus of concern. When Conklin finally went to a doctor, she was told the lump was benign. Conklin’s boyfriend insisted she seek a second opinion, and the next doctor delivered the diagnosis: Conklin had breast cancer and 21 infected lymph nodes.

When asked why her boyfriend so strongly insisted she see a doctor and not accept the initial diagnosis—did he have prior experience with breast cancer?—Conklin’s lips curl into a grateful smile. “No,” she says. “He was just afraid he was going to lose me.”

In recent years, the number of women dying from breast cancer has declined in Wisconsin, but medical advances improving survival have not benefitted everyone equally; although Caucasian women are diagnosed with breast cancer at a higher rate, mortality rates for African-American women have remained stubbornly high.

At 62—an age she proudly admits—Conklin’s survival is a testament that breast cancer is not a death sentence. But she fears many in her community are not getting the message.

The lines are clear. When studying a graph of the death rates since 1995 of all Wisconsin women diagnosed with breast cancer, the trend is a gradual decline. But, if you draw separate lines for white and African-American women, a gap appears. Both lines slope downward slightly, but the line for African-American women remains on top.

The most recent Wisconsin Cancer Incidence and Mortality report offers the same conclusion: Although Caucasian women in Wisconsin were diagnosed more often with breast cancer than any other group, African-American women were 12 percent more likely to die from the disease. Wisconsin isn’t alone in the fight. Overall, breast cancer is the leading cause of cancer death for African-American women in the U.S.

The numbers tell a simple story, but untangling their meaning is another matter. Nationwide, the explanations often point to factors associated with poverty, and for Wisconsin women living in lower-income communities, the story is the same. For many, the challenges to staying healthy begin long before seeking medical care.

Barriers to preventing disease emerge from all sides. Less access to healthy foods and higher rates of obesity may work to
increase the risk of developing cancer while stigmas associated with breast cancer,
a lack of knowledge about screening for the disease and being underinsured all play a role in keeping women from seeking preventative care. If diagnosed, these same barriers become a hindrance to survival. For many women in underserved or underinsured communities, battles for health extend beyond fighting illness and become battles for access, comprehension and time to heal.

Factors that are trickier to measure could be making an impact as well.

“There is a component of stress that can’t be denied,” says Susan Corrado, a parish
nurse who has worked at the Allied
Wellness Center—a neighborhood center promoting health awareness for a range of
issues including breast cancer in the
Allied Dunn’s Marsh neighborhood—since it opened in 2004.

“Working on Allied, [I see that] people are dealing with a lot of complex social issues related to poverty,” she adds. “[African-
American women living on Allied Drive] have the lion’s share of responsibility for caring for children…Taking care of one’s health gets put on the back burner.”

Yet, even if these conditions improve, a more insidious factor could be to blame: Because African-American women often develop more aggressive tumors, some researchers point to potential biological differences and genes as the culprit of the disparity.

Although debate continues over why African-American women have a lower chance of surviving breast cancer—The American Cancer Society estimates the five-year survival rate for an African-American woman is 77 percent, compared to 90 percent for white women—most doctors agree on one point: Early detection saves lives.

Generally, cancer treatment is most
effective against tumors in earlier stages of development, which is why the mantra from health officials has typically been to get screened early and often.

Public efforts to make a dent in breast cancer mortality by boosting early
detection have been in existence for
decades. In our area, the Wisconsin Well Woman Program (WWWP) makes free mammograms available to underinsured and lower-income women throughout Wisconsin. Over the last 15 years, the
program has sought ways to reach high-risk populations and in 2005 began making efforts to target African-American women within these communities. Initially, their efforts made little impact.

“I’ve been disappointed that we have not, in my opinion, been doing enough to reach African-American women about breast health and education so that they know resources are available,” explains Kari Sievert, program coordinator of WWWP. “We tried doing things differently with existing staff [at WWWP] who are not African-American and it was not very successful,” Sievert explains. “We developed materials but they weren’t very good, and we tried to get them into different places in the community but did not have someone who could really make connections.”

What the program lacked was a peer-driven campaign—with women reaching out to other women in their community—to spread awareness about the need for screening.

Convinced an African-American woman
would serve as a better liaison, WWWP partnered with the Allied Wellness Center in 2009 and applied for a grant through Susan G. Komen for the Cure, an international breast cancer advocacy organization with a branch in Madison, to fund a new position for a part-time specialist to do outreach.

To fill the new job, WWWP found Carla Dawkins. As a board member of the Allied Wellness Center, Dawkins was already working to elevate breast cancer awareness in the neighborhood. Both bubbly and determined, Dawkins was a perfect fit for the outreach position.

Dawkins’ message to women in this community is simple: Get screened.

 With funds from Komen, Dawkins and WWWP designed a new initiative offering
incentives—such as a salon gift card—to women over 50 who have their first mammogram, and the stated goal is to get 30 African-American women in for screening over the next year. But Dawkins personally hopes for 100 or more. Part of the challenge in reaching out is battling misconceptions.

“I could give a 15-minute presentation and it would dispel the myths they have about [breast cancer]…that it’s caused by underwire bras, caffeine, deodorant,” Dawkins explains. “[For that reason] I want to be the person you can call if you have reservations.”

Dawkins, who says she became passionate about fighting breast cancer after seeing family members battle cancer, makes sure she can be identified as a resource. Gesturing toward the trademark pink ribbon pin on her shirt—hers with an African flag in the center—she says, “I wear my little pink pin all the time, even if it doesn’t match my outfit [laughs].”

Dawkins’ new position began in May 2010, and although it has only been a few months, Sievert says she can sense change.

“I’ve already taken calls from six women.
It may not seem like a lot, but they’ve had personal contact with [Dawkins],” she says.

Sievert hopes if women have a positive experience with WWWP, they’ll spread the word that screening is free and that if diagnosed, the program can help women find treatment.

“We’re trying to eliminate as many barriers as possible. You don’t have to come in [to an office], applications [for free mammograms] are sent with a postage-paid envelope,” Sievert says, explaining how WWWP attempts to make the process of applying for help as smooth as possible.

Yet, there is only so much public programs can accomplish. Even with the availability of free screening, many women still struggle to bridge the divide.

“We’re doing extra follow up with women who are enrolling. But I’m getting
a pretty consistent message about not
having time to go [for screening] or get time off work,” Sievert says. 

Although African-American women have been hit hard by disparities in breast cancer treatment and survival, other communities in Wisconsin face their own unique challenges.

Sievert says in the future, she would like to see targeted initiatives for lesbians, who statistically are in less frequent contact with a doctor. Michelle Heitzinger, executive
director of the Susan G. Komen for the Cure Madison Affiliate, also hopes more help will come to rural women, who struggle
with finding acces to clinics and to the Amish and Hmong communities, where a distrust of government often keeps women from receiving care.

Even as the death rate from breast cancer among all women subsides, Heitzinger believes there is still a tremendous amount of work to be done to reduce disparities in Wisconsin. 

“We’re barely putting our fingers on the holes in the dam,” Heitzinger maintains. “Until a woman can hear the words ‘You have breast cancer’ and not be scared and not fear death, we have a long way to go.”

 For at least 20 hours every week, Conklin can be found at the Allied Wellness Center. Outside the center, development on the northern stretches of Allied Drive 

suggests a neighborhood transforming, moving forward. Inside, Conklin helps local residents reshape their lives with new jobs. As an employee for Experience Works, she assists with writing résumés and wading through work-related documents. 

Although Conklin has spent most of her life as a secretary, she considers herself a “jack of all trades.” If someone needs to know about breast cancer, she’s there to field questions.

One of nine children in a family from Missouri, Conklin is plain spoken and unabashed about her experiences—from the anger that followed her diagnosis, to enduring chemo and radiation therapy, to discovering a recurrence 10 years later and, ultimately, undergoing a mastectomy.

“I was sort of glad that I was around for people to ask me…they look at me and they’re not afraid of the word cancer anymore because I’m still around to tell my story,” she says.

Unlike Dawkins, Conklin has no official
role in fighting breast cancer—but she understands the need for women to hear about the disease from someone in their community. To spread the message, Conklin tells her story at church, the
Allied Wellness Center and at neighborhood meetings. Conklin also accompanies Dawkins in her awareness campaigns—handing out leaflets in the neighborhood and attending small meetings with local
residents to show them how to screen themselves for cancer and maintain a healthy lifestyle. Dawkins points out that in one instance, Conklin even went with a woman for a mammogram.

“There was one young lady who was very afraid [to get a mammogram]. Myself and [Conklin] were both willing to go with her hand-in-hand, just so she wouldn’t be alone though the process. [Conklin] was right there with her, made the appointment and went with her. And now she’s very grateful. I mean, she was terrified. She thought of everything she could not to go. But in the end, they didn’t find anything and she was fine,” Dawkins recalls.

Conklin echoes the changes women can make to boost their chances of survival from breast cancer, without embellishing her own role in bringing about change.

“I’m not looking for a pat on the back or anything. I just like to see people live,” Conklin states, explaining how her story may help others. “I think it’s important because I may be able to save a soul. They just need to know this—that I’m still here after 20 years. Don’t keep on procrastinating about checking your body. Because that may be the day that saves your life.”

For more information about the Wisconsin Well Woman Program, visit dhs.wisconsin.gov/womenshealth/wwwp or at Susan G. Komen for the Cure komenmadison.org.