Part of Paula Cupertino’s job is convincing members of the growing Hispanic community here why cancer screenings are important.
“Latinos are less likely to complete screening for breast cancer, skin cancer and colorectal cancer,” she said. “When a disease is identified, usually in the later stages, they die of a disease that could have been prevented with a simple screening.”
Cupertino is an assistant professor in the Department of Preventive Medicine and Public Health at the University of Kansas Medical Center. She works to improve Latinos’ access to screenings and teaches about cancer detection and prevention, particularly as it relates to tobacco use.
“The state of Kansas is changing demographically,” Cupertino said. “The change in the number of Latinos in this area is very recent. There’s not a lot of data, there’s not a lot of resources, there are no researchers. I’m pretty much the only one working in this area on cancer-related disparities among Latinos.”
So, she relies heavily on contacts she has made using the National Cancer Institute’s Cancer Information Service Partnership Program, which has a federally-funded regional office at the KU Med Center serving Kansas, Missouri, Nebraska and Illinois.
Program officials make information from the NCI’s vast cancer research network available to people or local organizations that work with minorities and the medically underserved, quickly packaging and tailoring the NCI’s resources to fit the needs of each organization.
“When you search the Web, you can find good information, but the information is not always based on evidence,” said Hope Krebill, regional director for the partnership program.
Cupertino and others said they were disappointed to learn the program will end in January 2010, closing the 15 regional offices around the country, and leaving a gap in their efforts to help people become healthier.
The partnership program, “has access to so much information at the federal level, but they’re very grounded to local efforts,” Cupertino said. “I don’t know what I’m going to do when they go away. Calling Washington, D.C. to find out what I should do in Kansas City doesn’t make too much sense to me.”
Two-way street
The partnership staff members reach out to underserved populations, providing evidence-based information about cancer screening and prevention. They also train health care professionals and advise local groups on the best ways to build successful programs.
The regional offices also report back to the NCI about what such organizations and groups need from the federal agency to better reach the populations they seek to help.
“It really is collaboration,” Krebill said. “We see it as a walk together. For some we work on projects together. With others, we work to build capacity in their own programs. For some, we provide information.”
The regional office housed at KU Medical Center has about 60 partners in the four states it serves, ranging from small community groups such as the Coalition of Hispanic Women Against Cancer to state health departments. It also partners with national organizations such as the American Cancer Society and Susan G. Komen for the Cure, a foundation dedicated to education and research about breast cancer.
“It’s the first time for many of our partners that they’ve tried to implement evidence-based interventions,” Krebill said. “The partnership program helps move science into practice to truly impact health disparities.”
A recent example was the regional office’s work with a faith-based program called Body and Soul in St. Louis, said Amy Biel, the region’s partnership program manager. Body and Soul is a wellness program aimed at getting members of African American churches to eat healthier and get more exercise, which can reduce the risk of cancer.
A staffer from the partnership program helped the organization assess its needs, find other local partners also interested in improving health through the churches and form a coalition.
“Now they are able to leverage their own resources for the program,” she said. “They’re touching a lot of different populations. The coalition is a lot stronger because they were able to tap into technical assistance from NCI.”
The coalition also agreed to collect data to gauge the effectiveness of their program, a hallmark of evidence-based programs, said Debbie Pfeiffer, project manager for the Cancer Prevention and Control Research Network at Washington University in St. Louis.
“For a lot of partners, it is really time consuming and a lot of work to implement evidence-based interventions,” she said. “If they don’t have that technical assistance, they’ll fall back on what they think works, or what they used to do, or what the pastor wants them to do. They won’t be evaluating the program, so they won’t know if it works.”
The Four Tribes Women’s Wellness Coalition, based in Horton and supported by the Prairie Band Potowatomi, Kickapoo, Sac and Fox and Ioway tribes, asked the regional office for help accessing screening sites.
Now women in the tribes are receiving screenings as soon as potential problems appear and are asking for other cancer information.
“They come in or I go to health clinics, powwows and health fairs,” said Fredia Perkins, the tribal coalition’s outreach coordinator. “They’re not afraid to come up to me and ask me for information. I think that has been one of the biggest barriers we have brought down.”
Uncertain future
The CIS regional partnership offices are funded through the National Cancer Institute. According to the NCI, the budget for the partnership program in fiscal 2009 was $8.5 million.
In October, the NCI announced the funding would expire in January 2010. The agency has posted a statement outlining its position on ending the program on its Web site.
When a KHI News Service reporter called NCI seeking comment, a spokeperson for the agency declined comment but referred the reporter to that statement.
According to the statement, the number of groups involved in cancer control and information dissemination “has increased substantially” since NCI launched the partnership program in 1984.
It also said that given the “current economic situation,” NCI was required to “think strategically about how resources are invested and whether these investments render the best approaches to achieve the greatest impact. More now than ever before, with limited resources, NCI must demonstrate responsible stewardship.”
The NCI pledged to continue working with minorities and underserved populations through its network of cancer centers.
The University of Kansas Cancer Center is in the process of applying for NCI recognition as a federally designated cancer center. The decision to end the partnership program would have no impact on the cancer center’s application, said KU cancer center spokeswoman Erica Brown.
‘A big void’
The NCI funds programs that investigate causes of cancer, improving detection and diagnosis of the disease. It also sponsors other research projects and clinical trials. Its total budget for fiscal 2008 was $4.83 billion.
“I really do believe in the NCI and its resources,” Krebill said. “While I am very disappointed, I’m more disappointed for what the NCI will lose and what the partners will lose. Hopefully the NCI will figure out a way to do more outreach. We’re doing way too much science to not get it into the hands of those who need it.”
“We receive a lot of NCI funding for our other programs,” said Washington University’s Pfeiffer. “We are just so going to miss working with the partnership program. We’re frustrated because we’ve moved so far ahead, and then this leaves our partners thinking, great, there’s another program that has been lost.”
Patrice O’Hara, manager of the Kansas Comprehensive Cancer Program, at the Kansas Department of Health and Environment, has also worked closely with the partnership program.
Earlier this year, the groups teamed to produce advertisements for colorectal cancer awareness that directed Kansans to the NCI’s 1-800-4-CANCER hotline.
It’s not clear what the state cancer program would have done if staff from the NCI Partnership program hadn’t been involved in the state coalition, O’Hara said.
“There will be a loss of members in our own partnership with a lot of experience and knowledge,” she said. “As those people move on, hopefully at least a few will stay in the cancer field, but it’s hard to do if you’re not working for a specific project. It will be a big void.”
-Sarah Green is a staff writer for KHI News Service, which specializes in coverage of health issues facing Kansans. She can be reached at sgreen@khi.org or at 785-233-5443, ext. 118.