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Diagnosing Disparities

Professor champions equal access to breast cancer screening to save African American women’s lives.

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In 2002, a group of women boarded a bus from Dallas to San Marcos to spend a day at the outlet malls. They came back armed with something of greater magnitude than new shoes and cropped pants. They were trained and ready to help women in their community get the mammograms and clinical breast exams that might save their lives.

The bus trip was one of many activities of the African American Breast Cancer Outreach project, a campaign directed by Dr. Mary Lou Adams and funded by the Texas Cancer Council to raise awareness of breast cancer and the importance of early detection among African American women.

Adams, associate professor in the School of Nursing, understands that involving people in health outreach projects may be serious business, but it also requires imagination to garner their enthusiasm and get them engaged.

“When recruiting volunteers, we found that many people in communities that didn’t have as much money as other communities were not always asked to be volunteers,” Adams says. “So we asked people to be volunteers and gave them incentives up front.”

One of those incentives was the outlet mall trip. It was a perk for the women, and it was a perk for the organizers as well.

“From Dallas to San Marcos, we had a captive audience on the bus,” Adams says. “We taught them about the importance of breast cancer screening, what their role would be and how they could help.”

The women volunteered 50 hours of their time over the course of the year, helping at health fairs and other community events, all with the aim of getting more women screened in socioeconomic groups where screening lagged behind the national average.

Breast cancer statistics are convincing. The chance of a woman developing the disease at some point in her life is one in eight. More than 230,000 new cases were reported in 2011. An estimated 2.6 million American women living today have had or now have breast cancer.

Adams adds one statistic she sees as a personal call to action: The death rate for African American women with breast cancer is 35 percent higher than for white women.

“This constitutes a health care disparity,” Adams says. “The work that I’ve been doing is trying to reduce the disparities in breast cancer detection among women, particularly in the state of Texas.”

When considering breast cancer today, early detection and intervention are key words, Adams is quick to point out. For most women prevention is not.

“In order to prevent something we have to know absolutely what causes it,” Adams says. “We know some things that mediate the disease and make breast cancer occur, but the absolute cause is something we haven’t pinpointed. A surefire method of prevention still eludes researchers.”

Efforts to reduce breast cancer mortality must focus on early detection of the disease through measures, including clinical breast exams and mammography. Those measures may be fairly straightforward for women with health insurance and established relationships with health care professionals. But for many women in underserved populations, screenings may seem out of reach. On the whole, minority women are less likely to have even heard of mammography. Delayed diagnosis of cancer is associated with the increased mortality rates these women face.

Adams believes that improving screening rates and early detection begins at the community level. She targeted the communities of Dallas, Houston and Tyler for the African American Breast Cancer Outreach project because those communities together represent more than 70 percent of the breast cancers found in African American women in Texas.

Rather than using a traditional medical model that has its general focus on the biological issues related to a disease, the project placed its emphasis on the roles various community groups and health beliefs play in the development of illness. She and her colleagues sat down with community leaders and listened closely.

“We talked to people about the issues surrounding breast cancer in their community,” Adams says.

“Were there enough facilities for women to go to be screened? Did they have problems with transportation? Did they have problems accessing the health care facility? Did the facility have requirements for people to become patients? How could you help women meet those requirements or find another way to get into the system?”

The project then developed outreach approaches for each community. Sometimes this meant putting screening information in beauty shops and training shop attendants to talk with their clients about the disease. Sometimes it meant organizing screening events at community parks and churches. And sometimes it meant shopping.

In the end, the campaign resulted in breast cancer screenings for 8,000 women and identified almost 100 cancers, which were successfully treated. And Adams and her colleagues learned a lot about how complicated the barriers to getting women screened can be.

Today, Adams is applying the program she developed to encourage cancer screenings in Central Texas. The program, called Breast Health, is being run by the Alliance for African American Health in Central Texas, and is funded by a grant from the Susan G. Komen for the Cure.

While not having the money or the access to health care facilities are obvious barriers, Adams and fellow researchers discovered that emotional barriers are just as potent. In fact, a study related to the project revealed that the primary reason women said they didn’t get screened was a fear of discovering they had breast cancer.

“We have to figure out ways to overcome this fear,” Adams says. “In the project, we used a marketing firm to help us decide what kind of messages would reach women.”

They determined family-focused messages held the most possibilities. One strategy they employed was a Mother’s Day greeting card campaign that distributed greeting cards to school children. The cards included a message that encouraged women to participate in breast cancer screening, a message that came from their kids.

They also determined that a culturally conscious, respectful medical environment was critical for making women feel they were in charge of their health. That’s exactly what Adams had has promoted at the Community Women’s Wellness Center (CWWC), which Adams co-founded with Dr. Susan Grobe in 1991. The CWWC merged with the Family Wellness Center (FWC) in 2008.

Continuing a program set up by Adams, the FWC, in partnership with CommUnityCare South Austin, continues to provide free breast and cervical cancer screenings and referrals for free mammograms.

By taking away the cost barrier many women face, screening becomes possible.

“We’ve found that people have competing interests,” Adams says. “If you don’t have the money to test for a disease that you may not have, you can’t do that. It’s just not always the highest priority when you have to worry about whether or not you have enough money to pay for food.”

Since its inception, the clinic has screened thousands of women, and it has received commendations from the Department of State Health Services, which has held its annual wreath project at the clinic to kick off Breast Cancer Awareness Month. First Lady of Texas Anita Perry has hung a wreath at the clinic’s entrance to recognize its work in cancer detection.

And the clinic has saved lives. Austin resident Linda Miller (whose name is changed here to protect her anonymity) credits the wellness center and Adams herself with making her aware that health care was accessible to her when she really needed it.

A full-time social worker and single mother with no health insurance, Miller describes herself as the “working poor.” Regular health care was out of her reach. She used the services at the wellness center for years, receiving regular screenings for breast and cervical cancer. But when she started hemorrhaging, and needed care beyond screening, she didn’t know where to turn.

She turned to Adams.

“Mary Lou got the ball rolling to save my life,” Miller says. “She let me know that care was accessible, and I knew she would walk me through it. I felt as much in control as she was.”

Adams got Miller to the emergency room, and she was eventually diagnosed with endometrial cancer. One year later, after a hysterectomy and follow-up care, Miller is cancer free.

“One of the highest tributes I can pay Mary Lou is that she sees the patient as part of the team,” she says.

There is no shortage of tributes people offer Adams, whose colleagues call her the most generous person they know. Her approach is hands-on and immediate. Simply passing out brochures, she knows, is not enough to increase the numbers of women being screened for breast cancer.

“Outreach is labor intensive. It’s not something you can do sitting at a desk,” Adams says. “You’ve got to get up and go out and talk to people and let them know you. You have to let them understand what it is you’re trying to accomplish.”

In this, Adams is tireless. She has been chair of the Comprehensive Cancer Coalition, a consortium to look at cancer control in the state. She was on the executive steering committee of the 2005 Texas Cancer Plan. She was a member of the Mayor’s Fitness Council.

And she goes out and meets with people in the community regularly, spreading the word on the importance of screening and on an individual’s responsibility for her own health.

“She’s been a valuable resource person for us,” says Plunella Hargrove, president of the Austin chapter of the Sisters Network, a national support group for African American women diagnosed with breast cancer.

Hargrove, a breast cancer survivor, has worked closely with Adams and the wellness center for years. When Adams does a presentation, she says, people remember it.

“She’s really dynamic and she’s incredibly resourceful,” she says. “When we have questions about health and so forth, we’ll call her and ask for some input. She really opens eyes about taking charge of your health.”

This story was originally written by Vive Griffith and updated by Tim Green.