April 28, 2011 -- Cancer incidence among minority populations is expected to double in the next 20 years, while only increasing about 31% among whites, according to a new report from government advisors.
The report, from the President's Cancer Panel, says there are still striking inequities between racial groups in this country when it comes to cancer risk, incidence, treatment, and survival. In order to address those problems, the panel urges better data collection, more research, specialized training for doctors, and more help for patients who can't speak English as they try to navigate an increasingly complex health care system.
"I think everybody is well aware of the changing demographics in America, as far as the aging of the population, which will increase the prevalence of cancer, and also what's happening in terms of the ethnic shift in the populations in the United States," says Margaret L. Kripke, PhD, a member of the President's Cancer Panel.
"What we thought would be important is to see what impact that would have on cancer incidence and mortality in the United States," she says. "And to our great surprise, it doesn't seem to be well described and well characterized."
There's some information, but it's piecemeal, Kripke says. Without a comprehensive and cohesive picture, "we may be missing some opportunities to do prevention that could be very important."
Racial and Ethnic Differences in Cancer
Among areas of concern, the experts say, are striking differences in survival between white and black women who get breast cancer, even if they get the same kind of care.
Hispanic women appear to have different risk factors for breast cancer than white women, though the screening recommendations are the same for both groups.
African-American men are more likely to get prostate cancer than men of other ethnic groups, and they're also more likely to die from it, though the reasons are not well understood.
And children who carry genes associated with Hispanic or Latino ancestry are more likely to relapse after a diagnosis of acute lymphoblastic leukemia, emerging evidence shows.
The report concludes that the reasons for these and other disparities are complex.
Some differences may have genetic underpinnings, for example, while others may be because certain groups have trouble accessing the health care system or getting culturally sensitive or appropriate help once they do.
Many disparities, the panel notes, probably have less to do with race than they do with poverty and education.
"I agree with the report that race/ethnicity is a poor proxy for the major things that should be looked at like socioeconomic status and the level of education and in the case of Hispanics and other immigrant populations, acculturation," says Richard Warnecke, PhD, professor emeritus and co-director of the center for population health and health disparities at the Institute of Health Research and Policy at the University of Illinois College of Medicine in Chicago. "But they right now don't collect that data. It's very hard to get data on socioeconomic status."
To better address health disparities, the panel made 10 recommendations:
- Address serious data deficiencies. The report asks the president to convene an ongoing, multidisciplinary working group to develop more accurate and useful ways of characterizing the population. Until better categorizations are available, the report says, researchers should be explicit about the definitions they use for race and ethnicity and be clear about underlying weaknesses in their information.
- Improve data sharing among government agencies.
- Support better outreach and training to students so they have educational foundations that support careers in science and health care.
- Include cultural competency as an integral part of medical school and continuing medical education.
- Increase research on health disparities with a focus on sociocultural and biologic factors underlying the disproportionate burden of cancer borne by medically underserved, socially disenfranchised populations.
- Explore and evaluate the benefits of patient navigators and patient-centered medical homes to help people access health care.
- Re-evaluate current cancer-screening guidelines to determine their accuracy in assessing disease burden in different populations.
- Change patient-reimbursement policies to allow doctors enough time to gather relevant sociocultural information on their patients.
- Encourage greater use of medically trained language translators by hospitals and other health care providers.
- Continue funding American Indian health services.
Role of Health Care Reform
Many of the 10 recommendations in the 150-page report, which was developed before the Patient Protection and Affordable Care Act (PPACA) was passed last year, have already been addressed by health reform, the panel notes.
The panel says its report underscores the importance of the legislation, and in some cases, shows where federal agencies need to go beyond the minimum requirements of the law.
Title IV of the PPACA, for example, mandates that all federally funded health programs collect and report data on race, ethnicity, sex, primary language, and disability status by 2012.
The Department of Health and Human Services has to develop standards for that data, which, at minimum must adhere to criteria for race developed by the Office of Management and Budget (OMB).
Health reform also addressed many problems with access to health care faced by minorities. It authorizes patient navigation demonstration programs, for example, and mandates that the government establish comprehensive methodology and criteria for "medically underserved populations," a designation that delivers federal funding for health care to places that don't have enough facilities or medical providers.
The act also mandates better data sharing across agencies.
There are recommendations in the report that are not addressed by the PPACA, such as the need for standardized definitions of race and ethnicity, the need to expand research and improve understanding of the factors that influence cancer risk and outcomes among diverse populations, and the need for higher standards of cultural competency among health care professionals.
Looking to the Future
Researchers say the changes will be welcome, when they come.
Warnecke has a federal grant to study health disparities in women with breast cancer, but he can't get access to the government data collected on breast cancer in his state.
Illinois collects detailed data on breast cancer cases, and along with other states, and reports it to a federal registry.
"I have a center for population health and health disparities that's funded by the National Cancer Institute, and we're studying breast cancer, and it's difficult," Warnecke says. "I can get data more easily from seven other states than I can from my state, and there's something wrong with that."