|Summer 2010-Exporting Knowledge|
Victory against cancer may ultimately depend on a hairstylist in rural Alabama. Or a Zambian church leader. Or a soccer coach in Brazil’s tobacco fields.
These people, and many more like them, serve on the front lines of the fight against cancer. They use knowledge from the UAB Comprehensive Cancer Center to help save lives by spreading the word about prevention and early detection.
The Cancer Center has long been recognized as a community outreach leader for its work among minority and underserved populations. Now the Cancer Center is reaching far beyond Birmingham to share its expertise with communities across the region and the world—and what it receives in exchange could impact the lives of patients close to home.
Alabama to Africa: Empowering Communities to Fight Cancer
Despite major advances in cancer treatment, one group continues to fall behind. African Americans are much more likely to die from cancer than Caucasians—33 percent more likely for African-American men and 16 percent for women.
This stark disparity spurred the creation of the Deep South Network for Cancer Control (DSN), the flagship of the UAB Comprehensive Cancer Center’s outreach efforts. Originally funded by the National Cancer Institute in 2000, DSN was designed to build a community infrastructure to eliminate cancer health disparities by increasing cancer awareness and screening rates among minorities and underserved populations in two poor rural regions—the Alabama Black Belt and the Mississippi Delta—and two urban areas—Alabama’s Jefferson County and Mississippi’s Hattiesburg/Laurel Metro.
Initially focusing on breast and cervical cancers, DSN relied on a novel strategy to spread messages about prevention and early detection. It identified “natural helpers,” the trusted members of each community—ranging from pastors to hairstylists—and trained them as community health advisors (CHAs) to educate their families, friends and neighbors about cancer. The CHA model has been a huge success; in a decade, it has trained more than 1,700 people and decreased the disparity in mammography screening rates from 17 percent to .25 percent among the Medicare/Medicaid population in DSN’s targeted areas.
Today the Cancer Center is looking to expand DSN’s scope as the program enters its next generation of funding. One new focus is HIV-related cancers, particularly HIV-related cervical cancer. Alabama has one of the nation’s highest rates of cervical cancer per capita, due in large part to the state’s many rural and impoverished areas where residents do not have access to Pap smear screening or early treatment. Worldwide, cervical cancer is the second-leading cause of cancer death among women, and it is particularly prevalent in underdeveloped nations.
To help reduce those numbers, DSN leaders are working with colleagues thousands of miles away in the African nation of Zambia, which has been tremendously successful in educating its citizens about screening and awareness of HIV-related cancers, including cervical cancer. “Zambian Peer Educators have recruited and screened nearly 30,000 women in the last three years through its cervical cancer prevention program, which is phenomenal,” says Claudia Hardy, M.P.A., the DSN program director who is based at the UAB Cancer Center. “We want to learn from them, observe them and figure out what they did to reduce the stigma associated with getting people tested and screened.”
The innovative ZamBama project aims to develop a community-based approach involving both Zambians and African-Americans in the Black Belt and Delta—populations that suffer substantially from HIV and AIDS-related malignancies. “We’re forming a community partnership infrastructure that pulls key people from the communities we’ve served over the past 10 years,” Ms. Hardy explains. The partnership will include investigators from the Cancer Center, the UAB Center for AIDS Research and the UAB/Zambia-led Center for Infectious Disease Research in Zambia (CIDRZ).
HIV is Zambia’s number-one health priority; one in every five adults there is HIV-positive. The incidence among young women ages 15 to 24 is especially high—nearly four times that of men in the same age category. Because most cervical cancers are caused by the human papillomavirus (HPV), which can be transmitted sexually, that—coupled with the high HIV rate—means that about 90 percent of the HIV-positive women in Zambia are also positive for HPV.
In January 2010, Ms. Hardy and several colleagues traveled to Zambia on a fact-finding mission, forging another link between the Cancer Center and the African nation. In 2005, UAB Cancer Center senior scientist and gynecologic oncologist Groesbeck Parham, M.D., established the CIDRZ Cervical Cancer Prevention Program in the capital of Lusaka. Through this program, Zambian teams use peer educators—much like the DSN’s CHARPs (Community Health Advisors trained as Research Partners)—to communicate messages about HIV and cervical cancer.
Members from the Zambian teams traveled to Alabama this summer so that DSN leaders could exchange information about efforts under way in Jefferson County and the Black Belt. By this fall, the DSN will have developed a community action plan that form the basis of an infrastructure to begin decreasing stigma and increasing awareness and screening of HIV-related cervical cancer in Alabama and Mississippi.
“We have our work cut out for us,” Ms. Hardy says. “In the United States, HIV and cervical cancer are two diseases that our African-American communities don’t want to talk about. People either don’t know they have it or won’t readily admit to it, and because of that, we’re not reaching about 40 percent of the underserved population for cervical cancer screening. What we hope to do—and what our Zambian teams will help us with—is to become creative in identifying women who are HIV-positive but who also are at risk for cervical or other HIV-related cancers. This as an opportunity to reach more underserved women with cancer, which is our ultimate goal as part of the UAB Comprehensive Cancer Center.”
DSN also is targeting physical activity and lifestyle choices among African Americans in its Deep South communities. CHARPs are now helping to implement research interventions based on individual weight loss and its ability to reduce cancer risk.
For example, the Body & Soul initiative, developed for African-American churches, encourages parishioners to eat a healthy diet of fruits and vegetables. Since its implementation, 50 percent of the congregation members are eating at least four to five servings per day. Likewise, DSN’s WALK Campaign has generated a significant response by encouraging residents to increase their physical activity by joining neighborhood walking teams. So far, more than 1,800 people have enrolled in the campaign. “Our communities are really interested in obesity and nutrition right now, and we’re hoping to capitalize on that as much as possible in our outreach efforts,” Ms. Hardy says.
In the last three years, DSN has conducted more than 1,500 community-based cancer awareness activities, reaching more than 116,000 individuals—a huge change from DSN’s early days, when these communities were hesitant to openly discuss cancer. “The communities now come to us and ask for help instead of us having to beat the bushes to come up with programs. That shows that they are more empowered and concerned about their health care, which is wonderful.”
Birmingham to Brazil: Promoting Prevention and Early Detection on Two Continents
To educate, you must also advocate. That’s the philosophy driving the outreach efforts of Isabel Scarinci, Ph.D., a UAB Comprehensive Cancer Center associate scientist and an associate professor in the UAB Division of Preventive Medicine. “You can’t do outreach and educate a community about anything unless you have the infrastructure to deal with the health problems you find and trained individuals to continue the efforts,” she says.
Integrating teaching with action has helped Dr. Scarinci successfully spread cancer prevention and early detection messages throughout Alabama’s growing Latino communities. With a 2002 National Cancer Institute grant, she developed Sowing the Seeds of Health to target breast cancer and cervical cancer in Birmingham’s suburbs. Now the program has expanded to six counties in north and central Alabama, encompassing both urban and rural areas.
Dr. Scarinci’s first challenge in launching the initiative was establishing trust in the immigrant community, so she turned to local churches. “I would go to two or three services on Sunday,” she says. “I wanted the pastor or priest to know who I was.”
Through those churches, Dr. Scarinci and her team identify laypeople among the Latino members and teach them to become community health advisors (CHAs)—similar to those in the Black Belt. The CHAs then help determine the best ways to disseminate information to their families and neighbors. “They decide what to do and how to do it,” Dr. Scarinci explains. “They started an event called Pensando Siempre En La Mujer Latina (Always Thinking About Latin Women), which we do once a year at two different churches in Birmingham in partnership with St. Vincent’s Hospital. A physician talks about breast and cervical cancers, we have a lunch, and the women leave the event with an appointment for their Pap smears and mammograms. A Susan G. Komen Breast Cancer Foundation grant pays for the lunch and the educational materials. Everything else is donated by volunteers.”
Cooper Green Mercy Hospital and Birmingham Healthcare provide the Pap tests, and each woman pays only $25 for the screening; St. Vincent’s Hospital donates all of the mammograms. If any breast or cervical cancer is found, UAB and the two other local partnering hospitals provide treatment. Dr. Scarinci says that 70 percent of the women keep their appointments and that more than 1,000 women have been screened. “Although we’ve found some minor abnormalities, we’ve found only three cancers,” she says. “This is good news. We are promoting preventive care in a population where many women have never had a Pap or a mammogram. If we find cancer, we will find it early.” What’s also important, she says, is that the women are becoming regular patients of the clinics.
A related program, Friendship Circles for Health, also uses Dr. Scarinci’s Latino support network. “It’s a randomized clinical trial addressing cervical cancer prevention and early detection with a comparison group promoting diabetes prevention,” she explains. Dr. Scarinci also has established a relationship with the local Latino soccer league to educate men about sexually transmitted infections, including human papillomavirus, which can lead to cervical cancer in women.
Dr. Scarinci emphasizes that all the programs are partnerships. “Not a single program has been done without CHA input,” she says. “We are really with them; it’s not a service to them from the Cancer Center.”
Dr. Scarinci recently took this partnership to her native country of Brazil. There she directs two outreach/research efforts to promote cancer prevention and early detection.
The first project is creating a network to promote tobacco control among women in Brazil, the world’s second largest tobacco producer. In the country’s south, where most tobacco farms are located, small growers are often “totally dependent” on the tobacco companies, Dr. Scarinci says. In this atmosphere, tobacco use is prevalent, and girls take up the habit in particularly high numbers.
In response, UAB and Brazilian academic and government partners are adapting ideas with Alabama roots. Once again, Dr. Scarinci is identifying the natural leaders in each community and training them to share vital information. The concept should thrive there because community is enormously important in Brazilian culture, she says. “They rely on each other; they trust each other rather than institutions.
“We as researchers become consultants to these individuals, in a way,” Dr. Scarinci says. “For example, if they say they want to do a media campaign, we provide the methodological consultation to turn this idea into a research project and evaluate its effectiveness.” Dr. Scarinci’s Brazilian initiative was one of only 11 international tobacco-control projects to receive NIH funding in 2008, winning a five-year, $1.5-million grant, and it’s paying off.
“When I was there in November,” Dr. Scarinci says, “they passed one of the most strict laws about using tobacco in any closed space, including bars and night clubs; if it has a roof, you can’t smoke there. The network was very instrumental in this process. This shows the power of having an organized group working with policymakers. We are almost done with a short video where we interview the people who passed the law and talk about our project. And we are now doing a larger epidemiological study in seven towns.”
Dr. Scarinci’s second Brazilian project encourages underserved women in Curitiba, Paraná’s capital, to get breast cancer screenings through funding from Susan G. Komen for the Cure. Though Brazil’s national health system offers every resident access to care, “more than half of women 40 and older are not getting their mammograms,” Dr. Scarinci says. “It’s not a priority for them. So they don’t go to their appointments.”
Working with their Brazilian partners, UAB researchers first explored motivators and barriers associated with breast cancer screening through focus groups with women who have had mammograms, women who have never had the tests, and breast cancer patients. Based on these findings, they developed a questionnaire to validate the findings and administered it to more than 500 low-income women. “We’re in the process of intervention development—going back to the community with the data to see what should we do,” Dr. Scarinci says.
She also continues to advocate, even in Brazil. “We’re not just going there, doing an isolated project, and leaving,” Dr. Scarinci says. “We are training the next generation of Brazilian scientists and building a capacity for research” so that they can launch their own health-care initiatives. Likewise, UAB is also learning from their partners in Brazil. Last year, UAB Cancer Center director Edward Partridge, M.D., accompanied Dr. Scarinci to Brazil “to learn how the health system works so that we might implement it to help underserved populations in Alabama,” she says. “As we expand and open up to other countries, that knowledge, in turn, comes back.”