Breaking down barriers

Race for the Cure at IUPUI

Race for the Cure

More than 35,000 people came to the IUPUI campus April 22 for the 15th annual Indianapolis Susan G. Komen Race for the Cure, helping raise both public awareness of breast cancer and funds for research into the disease. The field of entrants included more than 7,800 men and approximately 2,000 breast cancer survivors; those figures, coupled with the family members and friends who came to the event to watch their loved ones take part, make the event one of the most vibrant parts of the city's annual calendar.

With her quick smile, comfortable voice and easy-going manner, Kathleen Russell doesn't look much like a TV cop kicking down a door to stop the villain. But don't be fooled. To a growing number of women in Indianapolis' African-American neighborhoods, Russell's fight against the deadly effects of breast cancer makes her a hero in their eyes. The IU School of Nursing researcher and faculty member works hard both on the IUPUI campus and off it to fight the threat of breast cancer, training a group of lay health advisors to act as surrogates to encourage women-especially minority women-to get regular mammograms.

Testing is key

"It's vital that we convince women to get themselves tested, and often," says Russell, who graduated from the IUPUI-based nursing school in 1973. "Studies show that African-American women are more likely to die from breast cancer, even though Caucasian women are more likely to get the disease."

One of the biggest reasons for that mortality rate is that minority women "don't find the disease early enough to get effective treatment," Russell says. And mammograms are still the best method for early detection and treatment.

Russell and her group of lay advisors have several barriers they have to overcome to reach their goal of full-and early-testing. "Part of our problem is that the neighborhoods these women live in are more likely to be medically underserved," the nursing expert says. "Another is that many are uninsured or underinsured, and therefore can't afford regular health care.

"Some are deterred by medical beliefs ("I don't want a mammogram because the x-ray can cause cancer"), others by health practices ("I only see my doctor when I am sick"), still others by cultural beliefs ("It's better not to know if you have breast cancer")," Russell adds.

Other concerns: clinics are so busy that getting an appointment is problematic, especially when it is difficult to take time off from work. Transportation to and from medical centers and clinics likewise is a barrier. And having no one to help with dependent care responsibilities can deter women from getting much-needed mammograms.

"In a way, it almost doesn't matter what the specific problem or barrier is," Russell says. "It's our job (as health advisors) to try to find solutions, to break down those barriers, to help women navigate the health-care system."

Battle is personal

Russell's battle against cancer is built on personal experience. "It is definitely personal," she says. "My children's godmother was diagnosed with breast cancer. So was my mother's sister. I know how much pain and heartache breast cancer can cause, and in whole families. That's one of the reasons why I work so hard to find answers." Russell is a realist, aware that advice from researchers on college campuses and doctors in major hospitals often is lost in neighborhood life. That's why she's built her program on lay health advisors who are the community connections for Russell's project.

"The women who are part of this program know how important they can be, and they are motivated," she says. "The women they talk with each week are friends and neighbors. They go to the same churches and schools and stores. They are the human component of our work."

The design of Russell's lay-based program is no accident.

"I'm a community-oriented person," Russell says. "I love working with people on their home ground. It means that I'm off campus most of the time, but that's OK; I like being out where life is going on."

Next step

Training lay workers is a vital first step, but Russell isn't stopping there.

"I'm working on an intervention that will fit into the lives of the people we need to reach," she says. "It doesn't do any good to create something that people won't use. It has to be something they are comfortable with, something they can believe in." Russell has built her program out of her own experience, but also the work of fellow researchers in the nursing school, experts such as renowned cancer researcher Victoria Champion and others from the IU School of Medicine.

"A lot of the work I do is based on behavior, so it's natural to stay in touch with the work of behavioral scientists," says Russell. "I want to learn as much as I can about the things that affect the way people behave; otherwise, it will be hard to develop effective messages." Ultimately, Russell hopes to blend the personal approach of her project with technological findings from Champion's research to move community health to a higher level.

"We also need to develop similar programs that address the needs of Latino communities, to see whether the problems they face are similar or different to African-Americans," Russell says. "In the long run, we'll need a multi-disciplinary approach to make sure we get to know all the populations we want to serve, and tailor what we offer to each group's needs."