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Date: Jan. 20, 1999
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Minorities, Poor Americans More Likely to Develop and Die From Cancer; Revamped Federal Effort Needed to Understand Reasons

WASHINGTON -- The National Institutes of Health (NIH) should expand its effort to understand why poor Americans and some ethnic minorities are more likely to develop and die from certain types of cancer, says a new report from a committee of the Institute of Medicine (IOM). Though overall cancer rates have fallen in recent years, they remain higher for some groups of Americans. Understanding the reasons for these differences is limited by constraints on funding for research, inadequate data collection, and lack of coordination among related research programs.

"With the population becoming increasingly diverse, it is critical that we learn why some ethnic minorities and the medically underserved are more prone to cancer and less likely to survive it," said committee chair M. Alfred Haynes, former president and dean, Drew Postgraduate Medical School, and former director, Drew-Meharry-Morehouse Consortium Cancer Center, Los Angeles. "This information will benefit all Americans and help the medical community craft prevention strategies that work."

For reasons that are not well understood, African-American men are disproportionately affected by prostate cancer; Asian Americans are more likely develop stomach and liver cancer than white Americans; and cervical cancer is higher among Hispanic- and Vietnamese-American women. While African-American women are less likely to develop breast cancer, they also are not as likely as white women to survive it. Native Americans have the lowest cancer survival rates of all. Differences in survival rates may be partly due to a late diagnosis and less than adequate medical treatment among the underinsured or uninsured. But explaining why some ethnic groups are more likely to develop cancer in the first place remains a challenge.

Though NIH has funded an impressive array of research related to cancer, it does not have an overarching strategy to guide its efforts in studying ethnic or socioeconomic differences, the report says. In addition, the National Cancer Instititute (NCI) spends only 1 percent of its budget -- or $24 million -- on studies of ethnic and medically underserved groups, the committee found.

Data Lacking

The NCI's Surveillance, Epidemiology, and End Results program provides the closest thing the nation has to a longitudinal national cancer database, but its usefulness for certain studies is hampered by the way data are gathered and minority groups are defined.

Following standard federal guidelines, NCI places people into one of four racial categories -- White, Black, Asian or Pacific Islander, or Native American -- as well as two ethnic categories -- Hispanic or Non-Hispanic. However, use of the term "race" is scientifically inaccurate, the committee said, because it implies that there is a fundamental biological difference among these population groups that does not exist. Also, there is a great deal of heterogeneity within "racial" groups. Asian-Americans, for example, include Southeast Asians, Koreans, Japanese, Chinese, and Indians, and grouping them together makes it difficult to pinpoint health problems that are particular to one or the other.

The committee recommends that classification be done on the basis of ethnic background rather than race, to more accurately emphasize the fact that differences in cancer incidence and mortality are due to a range of cultural factors, behaviors, health attitudes, lifestyle patterns, environmental living conditions, and other factors. Studies within and between these ethnic groups should be conducted to provide insights into how these factors may affect cancer risk. In addition, data collection should be expanded across a wider geographic range to include such groups as lower-income or poverty-level whites; Hispanic groups not currently in the database; African Americans living in Southern rural communities; and the culturally diverse American Indian populations.

Coordination Needed

NIH's Office of Research on Minority Health coordinates studies on ethnic minority health problems, but its impact is limited by the size of its budget and other constraints. The office should more actively coordinate, plan, and facilitate cancer research across NIH centers and institutes, the committee said. Only about $6.2 million of the office's $70 million annual budget was used last year for the study of cancer or cancer-related illness. And although funds from the Office of Research on Minority Health are designed to spur additional spending on promising projects at each institute, the IOM committee found that NCI has not added its own funds to any of the projects that originated in that office.

Another office with key oversight in these issues is the National Cancer Institute's Office of Special Populations Research. However, this office lacks the authority and resources to coordinate an extensive program of research on cancer among ethnic minorities, the report says. To better assess the burden of cancer in these groups, the office should be given greater authority to expand NCI's research on ethnic minorities and medically underserved groups.

The committee recommends that NIH establish a formal system of reporting to Congress and the public on cancer studies of ethnic minorities and medically underserved groups. The reports should include details on the number and type of research programs specifically targeted to these groups, and the contributions of ethnic minority scientists and community groups to the research priority-setting process. At the same time, NCI should improve efforts to disseminate information about cancer to patients, clinicians, and others in ethnic minority and underserved populations, and create a system to assess effectiveness. Cancer survivors in ethnic minority groups should be tapped as important resources for educating others in the community about cancer.

Further, NCI should improve its estimates of spending on research in these areas. It reports spending about $124 million in fiscal year 1997 for research and training programs addressing cancer in ethnic minority and medically underserved populations, but the IOM's analysis puts the figure at about $24 million. NCI's estimate is derived by calculating the percentage of minorities enrolled in research studies. The committee's estimate is based on the number of funded projects that are focused specifically on minority health issues.

NIH also should improve collaborations with medical institutions that serve minority and poor populations, intensify efforts to increase the number of ethnic minority researchers in cancer, and enhance the ethnic diversity of its advisory panels.

The study was funded by the National Institutes of Health. A committee roster follows. The Institute of Medicine is a private, non-profit organization that provides health policy advice under a congressional charter granted to the National Academy of Sciences.


Read the full text of The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved for free on the Web, as well as more than 1,800 other publications from the National Academies. Printed copies are available for purchase from the National Academy Press Web site or at the mailing address in the letterhead; tel. (202) 334-3313 or 1-800-624-6242. Reporters may obtain a pre-publication copy from the Office of News and Public Information at the letterhead address (contacts listed above).


INSTITUTE OF MEDICINE

Committee on Cancer Research Among Minorities
and the Medically Underserved