NCI states that several ethnic minority populations have ''disturbingly" high cancer incidence and mortality rates for cancers at some sites. These disparities, they state, may be genetically triggered, although the incidence more likely reflects differences in environmental exposures, risk behaviors, and utilization of prevention, screening, treatment, and rehabilitation services (National Cancer Institute, 1998b). These and other "underserved" populations have inadequate access to or reduced rates of utilization of high-quality cancer-related services or cancer programs. NCI refers to these groups as "special populations." In its report, NCI Initiatives for Special Populations, 1998, the Institute writes:
The term "special populations" encompasses those ethnic and racial groups designated by the U.S. government (namely Alaska Natives, American Indians, Native Hawaiians, Pacific Islanders, Asians, Hispanics or Latinos, and Blacks or African Americans). In many instances, these groups experience higher cancer incidence and/or mortality rates, or have been relatively underserved in terms of cancer programs. The National Cancer Institute (NCI) working definition of "special populations" also includes the elderly, low-income and low-literate individuals. The term "underserved" is meant to refer to populations that have inadequate access to, or reduced utilization of, high quality cancer prevention, screening and early detection, treatment, and/or rehabilitation services. (National Cancer Institute, 1998b, p. 1)
The NCI report did not define low-income individuals or groups with low levels of literacy. One could be led to believe that low-income groups could be interchanged with groups living under the poverty level, given that NCI follows OMB's recommendations, as well as those of the U.S. Bureau of the Census, which reports estimates of the numbers of people in the United States living under the poverty level. The low-income group, which is part of the "special populations" group, could possibly include some of the 15.6 percent of Americans who did not have health insurance during all of 1996. It was unclear if the low-income group includes some of the 14.4 million people in 1996 who had incomes of less than half of the poverty level, up from 13.9 million in 1995 (U.S. Bureau of the Census, 1997). NCI notes that the nomenclature for these groups is not standardized across the NIH.
Among the changes being considered within NCI's new Division of Cancer Control and Population Science (DCCPS) is the use of the term "special populations." According to Division Director Barbara Rimer, "the definition of 'special' should emerge from data and will change over time" (Barbara Rimer, National Cancer Institute, communication with the study committee, June 12, 1998). The committee agrees with this statement, and