The Unequal Burden of Cancer An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved (1999) / Chapter Skim
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2 The Burden of Cancer Among Ethnic Minority and the Medically Underserved Populations
2 The Burden of Cancer Among Ethnic Minority and the Medically Underserved Populations
Pages 33-92
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From page 33... ...
The chapter therefore discusses the problems associated with defining "minorities" and "underserved individuals," the complexity of the disease commonly known as cancer, the findings that describe the burden of cancer in these groups, and the conclusions derived from those data. The limitations of current federal cancer surveillance data are then discussed, followed by recommendations for the improvement of cancer surveillance among ethnic minority and medically underserved populations.
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From page 34... ...
OMB specifies four minimum categories for race, which include American Indian or Alaska Native, black or African American, white, and Asian or Pacific Islander. The two categories for data on ethnicity are Hispanic or Latino and Not Hispanic or Not Latino.
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From page 35... ...
, are attempting to address these challenges to identify populations accurately and trace any possible risk factors affecting their health. Robert Hahn of the Centers for Disease Control and Prevention (CDC)
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From page 38... ...
Medically Underserved Populations In the study of cancer, considerable attention has been given to "minorities" as a group, but medically underserved individuals make up a
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From page 39... ...
. As noted below, no consistent definition of "medically underserved" populations appears in the NIH descriptions of this construct.
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From page 40... ...
Poverty or low SES has not been implicated as a direct cause for a higher incidence of cancer, although research has found that it has an adverse relationship to survival rates. The American Cancer Society estimates that cancer survival rates of poor individuals are 10 to 15 percent lower than those of other Americans (American Cancer Society, 1990~.
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From page 41... ...
. are more prevalent in low-income, medically underserved populations (Friedell, Linv~lle, and Hullet, 1998, p.
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From page 42... ...
Nevertheless, studies are underway at NCI to evaluate the extent to which racial and ethnic disparities in cancer incidence may be related to SES factors (see Chapter 3~. As noted above, however, the term "low SES" could imply the existence of a number of cancer risk factors, yet for the low-income group within the NCI's "special populations" portfolio the focus seems to be only on the lack of monetary resources.
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From page 43... ...
Many of these ethnic minority group members do not know where to go when they get sick (Robert Wood Johnson Foundation, 1997~. When a regular source of care is reported, it tends to be a public health care facility, a hospital outpatient clinic, or an emergency room (Giachello, 1994; Robert Wood Johnson Foundation, 1997~.
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From page 44... ...
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)
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From page 45... ...
THE BURDEN OF CANCER AMONG ETHNIC MINORITIES AND MEDICALLY UNDERSERVED POPULATIONS Cancer was the eighth leading cause of death in the United States at the beginning of the 20th century. Today it is the second leading cause of death.
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From page 46... ...
3. Monitor trends in cancer incidence and mortality associated with specific forms of cancer with respect to geographic area and demographic, social, ethnic, and biological characteristics of the population.
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From page 47... ...
The Commonwealth of Puerto Rico was also included as a participant to "monitor cancer incidence in an industrially developing area with overall low cancer risk" (National Cancer Institute, 1998c, p.
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From page 48... ...
The current coverage areas of the 11 SEER program contractors are shown in Table 2-4. In 1997, the NCI Cancer Control Review Group also recommended that SEER program coverage "be expanded to include several populations not adequately represented: Appalachia; the rural south (with emphasis TABLE 2-4 Areas Covered by the 11 SEER Program Contractors Registry Year of First Full Location Entry Year of Data Coverage Area Utah Connecticut Iowa New Mexico Hawaii Detroit, Michigan 1973 1973 1973 1973 1973 1973 San Francisco- 1973 Oakland, California 1973 1973 1973 1973 1973 1973 1973 Seattle, Washington 1974 1975 Atlanta, Georgia 1974 1975 Rural Georgia 1978 1979 San Jose-Monterey, California 1992 1993 Los Angeles, California 1992 1993 Entire state Entire state Entire state Entire state Entire state Macomb, Oakland, and Wayne counties Alameda, Contra Costa, Marin, San Francisco, and San Mateo counties Clallam, Grays Harbor, Island, Jefferson, King, Kitsap, Mason, Pierce, San Juan, Skagit, Snohomish, Thurston, and Whatcom counties Clayton, Cobb, DeKalb, Fulton, and Gwinnet counties Glasock, Greene Hancock.
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From page 49... ...
Representation of Ethnic Minorities and Underserved Populations in the SEER Program With regard to the current sampling configuration, it is apparent that the ethnic minority populations are not equally distributed across the SEER program regions (Miller et al., 1996~. For example, most of the SEER program Hispanic population lives in California (69 percent)
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From page 50... ...
Decreases in cancer incidence can indicate successful efforts in the prevention of cancer. For example, the incidence of cervical cancer has decreased in the United States since the advent of the Pap smear in the 1940s, which detects cervical lesions for treatment before they become cancerous.
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From page 51... ...
Cancer Burden Among Ethnic Minority and Underserved Populations-Existing SEER Program Data Cancer can strike persons of any age, race, gender or SES. However, the occurrence of cancer, mortality rates, and length of survival can vary from group to group.
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From page 52... ...
CIncludes medically underserved white, non-Hispanic males among whom the cancer incidence differs from that among the majority white, non-Hispanic population. SOURCE: Miller et al.
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From page 53... ...
Rates of mortality from cancer of the cervix are also elevated among many groups of ethnic minority women (see Table 2-9~. Cancer mortality rates for Native Americans were not reported because of a low incidence (fewer than 25 cases)
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From page 57... ...
Updated survival rates (1960 to 1992) , which are available only for African Americans, support the suggested picture of poor survival among ethnic minority populations.
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From page 58... ...
The most disturbing highlight of this study was the lack of a consistent pattern of nonrepresentativeness of the SEER program data: These results should be reviewed in the context of the underlying issue that motivated these analyses. In particular, the fact that SEER data are frequently used in lieu of national estimates for cancer incidence, survival, and in some cases mortality has created a need for a systematic understanding of the degree of representativeness in the SEER data.
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From page 59... ...
Data collected by state cancer registries highlight some important regional differences in cancer rates that are not ascertained by the SEER program and illustrate the need to have state-specif~c data in order to develop and evaluate cancer control programs in each state. SEER data cannot be used for this purpose, except for the states included in the
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From page 60... ...
Also notably absent from this report were survival rates. The report card confirmed the disparate cancer burdens among members of different ethnic minority groups, illustrated by SEER program data from 1988 to 1992.
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From page 61... ...
They are: · cancer is the second leading cause of death; · American Indians have the lowest 5-year survival rate for all cancers when compared to other populations; · American Indians have the highest percentage of disseminated and ill-def~ned cancers; and, · very little is known about prevention and treatment patterns for cancer in American Indians. SEER program information on cancer incidence, mortality and survival in Native Americans is only available for American Indians living in New Mexico and Arizona (the Southwestern American Indians)
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From page 62... ...
Among Alaska Native women, the leading cancer sites are breast, colon and rectum, lung, kidney, and cervix, while among Southwestern American Indian women the leading incidence sites are breast, ovary, colon and rectum, gallbladder, and corpus uteri (see Table 2-13~. Alaska Native women have higher rates of colorectal cancer and lung cancer than any other ethnic group.
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From page 63... ...
. TABLE 2-15 Five Most Common Causes of Cancer Deaths Among Alaska Native and American Indian (New Mexico)
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From page 64... ...
IHS data for cancer incidence and mortality among American Indian and Alaska Native women demonstrated marked regional differences (Valway, 1990~. These data document a high incidence of lung cancer among Alaska Native men (85 per 100,000 compared to 79 per 100,000, the overall average rate for U.S.
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From page 65... ...
The incidence in the Phoenix area was 18.8 per 100,000 population, in comparison to 51.5 per 100,000 population among Alaska Natives. The IHS data for cancer incidence among American Indian women also illustrated large regional differences not shown by the SEER program estimates.
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From page 68... ...
The authors note that the lower survival rates among this population is amplified by increasing breast cancer incidence rates among New Mexico Hispanics and American Indians (Frost et al., 1996~. In addition to early detection, cancer survival is highly dependent upon effective treatment.
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From page 69... ...
For example, one study found that African-American women with advanced breast cancer were less likely than white women to receive surgery, and mortality was higher among African-American women than in white women with advanced disease (Breen and Ching, 1995~. Similarly, SEER program data were used to evaluate prostate cancer treatment, and the proportion of AfricanAmerican men who receive prostatectomy was lower than that of white men (Harlan et al., 1995~.
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From page 70... ...
This is more true in some regions of the country than others, as shown in Table 2-20. Other Measures of Progress Against Cancer Beyond the measurement of cancer outcomes such as survival and mortality, efforts have been made to measure a number of attributes related to cancer, such as levels of screening for cancer and the incidence of risk factors for cancer such as smoking and diet, and to assess differences among members of ethnic minority groups and medically underserved individuals in these attributes.
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From page 71... ...
ETHNIC MINORITIES AND MEDICALLY UNDERSERVED POPULATIONS 71 TABLE 2-20 Distribution of Racial or Ethnic Minority Groups, by State and Percentage of Population with Incomes Below the Poverty Level Pacific State (% below Non-Hispanic American Islander/ poverty level) WhiteHispanic Black Indian Asian Alabama (18.3)
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From page 72... ...
Existing data demonstrate that the rates of late stage at diagnosis and poor cancer survival rates are disproportionately higher among ethnic minorities. Similarly, the available information indicates that the rate of participation in cancer screening programs is lower among ethnic minorities and low SES individuals (Breen and Figueroa, 1996; Breen et al., 1996; Hoffman-Goetz et al., 1998~.
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From page 73... ...
have telephones (National Cancer Institute, 1994~. Special studies with the results of BRFSS have been conducted among Native Americans in attempts to address some of these concerns.
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From page 74... ...
African Americans and Hispanics have been oversampled in NHIS to improve estimates for these populations. However, Americans Indians and other ethnic minority groups with smaller numbers of individuals have historically been surveyed in insufficient numbers to draw conclusions about these populations.
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From page 75... ...
Women Who Have Had the Following: Racial or Ethnic Group Mammogram Pap Smear White, non-Hispanica 38.9 91.0 Blacka 29.6 88.1 Hispanica 26.2 74.8 American Indianb 14.8 82.6 SOURCE: aNational Health Interview Survey for 1987; bNational Medical Expenditure Survey for 1987. Ncffioncr1 Mediccr1 Expenditure Survey A special survey of American Indians and Alaska Natives was conducted in 1982 by using the National Medical Expenditure Survey.
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From page 76... ...
FUTURE DIRECTIONS IN ASSESSING THE BURDEN OF CANCER AMONG ETHNIC MINORITY AND MEDICALLY UNDERSERVED GROUPS Cancer Surveillance Among Ethnic Minorities and Medically Underserved Individuals Data on the incidence of cancer among ethnic minorities and medically underserved individuals indicate that not all of these groups are at higher risk of cancer than members of the majority population, and that the rates of some cancers among white Americans who are medically underserved are not very different from the highest rates among some ethnic minority groups. On the other hand, cancer mortality rates are signif~cantly higher and cancer survival rates are lower among many ethnic minority populations, a fact attributed in several studies to late stage of diagnosis and inferior treatment in the health care system.
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From page 77... ...
Federal health data are also distorted because of the persistent problem of census "undercounting," which is more prevalent among ethnic minority and underserved groups. Statistical sampling to correct this undercount, which has been debated extensively in Congress, would help to yield more reliable data regarding cancer incidence and mortality rates.
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From page 78... ...
, recommendations from which have already been implemented to improve the NCI's activities related to behavioral research and the study of ethnic minority populations; the NCI Special Action Committee Report (National Cancer Institute, 1996a) , which called for improved assessment and conceptualization of the cancer research needs of ethnic minority and medically underserved groups; and the Surveillance Implementation Review Group, which is on-going and is charged with recommending improvements in NCI's cancer surveillance activities.
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From page 79... ...
Likewise, inclusion of tribes in Oklahoma and Montana would begin to address the diversity within the American Indian population and provide a more complete assessment of the cancer experience of this population. It is not expected that a national registry will compensate for small numbers if the population under study is small.
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From page 80... ...
a reliable database for each state to serve as the basis for both the development and evaluation of cancer control efforts in that state. Medically Underserved Individuals As discussed earlier in this chapter, medically underserved populations may be defined in many ways, including on the basis of income, insurance status, access to cancer services, or some combination of factors, such as those related to SES.
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From page 81... ...
Such data include access to care, which can be defined as the timely use of personal health care services to achieve the best possible health outcome. This definition relies on both the use of health care services and successful outcomes as a measure of access to care, a key aspect of cancer control among ethnic minorities and medically underserved individuals.
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From page 82... ...
In addition, the reported SEER program data do not adequately address patterns of cancer survival among medically underserved white populations. Recommendation 2-3: Annual reporting of cancer surveillance data and population-based research needs to be expanded to Include survival data for all ethnic groups, as well as for medically underse~ved populations.
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From page 83... ...
In the U.S., many groups commonly referred to as "racial groups" may be more accurately referred to as "macro-ethnic" groups. These include "white" Americans of European descent, African Americans, Asian Americans, Hispanics, and Native Americans.
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From page 84... ...
Such an effort would benefit not only ethnic minorities and medically underserved individuals, but also the entire U.S. population.
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From page 85... ...
Thus, optimum cancer prevention and control strategies are those that combine biomedical and public health research to address the process of carcinogenesis across the life span, from prevention to screening and treatment. The surveillance data reviewed earlier in this chapter reveal considerable gaps in the understanding of cancer risk factors among ethnic minority and medically underserved populations.
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From page 86... ...
As to the genetic factors involved in causation, most cancers are the consequence of an interplay between more than one gene collaborating with one or more environmental factors. The environmental factor may be of overwhelming importance, such as cigarette smoking in lung cancer and papillomavirus infection in cervical cancer; however, even in these instances the existence of genes that make some individuals more or less vulnerable to the environmental factors are suspected or such genes can be identified.
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From page 87... ...
McKusick. ants and common disorders are being undertaken with increasing frequency, in part under the stimulus of the Human Genome Project, which is identifying many genes and many polymorphisms.
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From page 88... ...
In the pursuit of the Human Genome Diversity Project or any DNA-based studies with special populations, including ethnic minorities and medically underserved individuals, concerns about the risks of discrimination and stigmatization have been raised. The ethical, legal, and societal implications of the project have been addressed by Knoppers et al.
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From page 89... ...
· Means of improving estimate of exposures by direct and indirect means. Studies of Human BeLc~vior NCI research in the area of human behavior has not been strong in the past, but an expanded behavioral research program is planned in DCCPS, according to NCI officials (Barbara Rimer, National Cancer Institute, communication with the study committee, June 12, 1998~.
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From page 90... ...
Summery of C=' cer Risk Factor Research cans Survei11c~nce Needs The committee finds that the newly reorganized DCCPS at NCI is well poised to address a wide range of challenges to improving our understanding of cancer risk among ethnic minority and medically underserved populations. Greater precision is needed in the definition and conceptualization of high-risk populations, and research must examine the diverse range of cancer risk both within and between ethnic groups.
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From page 91... ...
Some ethnic minority groups, for example, may experience lower rates of some forms of cancer relative to the white majority; others, such as African Americans, experience higher rates of cancer incidence and mortality, and lower cancer survival rates. Groups of lower SES experience cancer incidence and mortality rates that are, in many instances, as high as the highest of any ethnic minority group.
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From page 92... ...
This implies a conceptual shift away from the emphasis on fundamental biological differences among "racial" groups to an appreciation of the range of cultural and behavioral attitudes, beliefs, lifestyle patterns, diet, environmental living conditions, and other factors that may affect cancer risk. Recommendation 2-5: The committee commends the proposed NCI program of expanded behavioral and epidemiological research examining the relationship between cancer and cancer risk factors associated with various ethnic minority and medically underserved groups, and recommends that these studies be conducted both across and within these groups.
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