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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3 Overview of Programs of Research on Ethnic Minority and Medically Underserved Populations at the National Institutes of Health
3 Overview of Programs of Research on Ethnic Minority and Medically Underserved Populations at the National Institutes of Health
Pages 93-153
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From page 93... ...
of NIH, as well as other federal and nonfederal research organizations, and to develop a cancer control program that demonstrates effective practices in cancer prevention and management. NCI interprets its mission as follows: The National Cancer Institute coordinates the National Cancer Program, which conducts and supports research, training, health information dissemination, and other programs with respect to the cause, diagnosis, prevention, and treatment of cancer, rehabilitation from cancer, and the continuing care of cancer patients and the families of cancer patients.
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From page 94... ...
. Although NCI directs a large and comprehensive program of cancer research within its portfolio and collaborates with other groups on research or cosponsors other cancer research at other ICDs, the committee finds that there is little evidence of a strategic plan for cancer research relevant to ethnic minority and medically underserved populations at NIH coordinated through NCI or any other central mechanism, as noted below.
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From page 95... ...
SOURCE: National Cancer Institute. million was reserved for intramural research and $231 million was allocated for cancer prevention and control.
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From page 96... ...
and the Clinical Cooperative Program (more than $86 million in awards, an increase of more than $12 million from FY 1993~. Spending on cancer control grants and contracts more than doubled to more than $70 million and $110 million each, respectively (National Cancer Institute, 1998e)
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From page 97... ...
Among cancers that disproportionately affect ethnic minority and medically underserved communities (in addition to the cancer types described above) , NIH spent $74 million across ICDs on prostate cancer-related research in FY 1997 (up from $13.2 million in FY 1990)
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From page 98... ...
103-43~. Its mission, as established by Congress, is to coordinate the development of NIH policies, goals, and objectives related to minority health research and research training programs and to expand the level of participation of minorities in all aspects of biomedical research (including training of minority scientists and participation of ethnic minority individuals in NIH-sponsored clinical trials)
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From page 100... ...
This committee, which held its first meeting in April 1998, is composed of 12 individuals with expertise in minority health research or research training, or both. The committee will advise the ORMH director regarding appropriate research priorities and activities for the enhancement of minority health for the inclusion of minority groups as subjects in clinical research and for the enhancement of minority participation in research and training programs.
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From page 101... ...
In FY 1997 ORMH allocated slightly less than $6 million to NCI (see Table 3-3) , including $1.75 million to support the Minority Adolescent HIV Prevention and Treatment Project, $1 million to cancer centers to support minority recruitment to NCI-sponsored clinical trials, and nearly $750,000 to support other efforts to increase minority participation in clinical trials.
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From page 102... ...
north investigators, for grants conferences to stimulate ethnic minority participation in clinical trials, supplemental funding for basic research related to prostate cancer and ethnic minorities, and small supplements for minority cancer control and prevention programs. ORMH's estimates of its expenditures on cancer-related research may overstate the amount of funding that directly addresses the cancer research needs of ethnic minority and medically underserved populations.
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From page 103... ...
The committee offers the following recommendation to strengthen ORMH's stated functions: Recommendation 3-1: The Office of Research on Minority Health should more actively serve a coordinating, pl;ammg, and facilitative function regarding research relevant to cancer among ethnic minority and medically underserved populations across relevant institutes and centers of NIH. To further this goal, the Office of Research on Minority Health should: · make criteria for Minority Health Initiative project support explicit; · coordinate with other specialty offices (e.g., the Office of Research on Women's Health)
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From page 104... ...
Perhaps most significantly for ethnic minority and medically underserved groups, three new offices were created to develop partnerships with community-based groups that focus on cancer. The Office of Special Populations Research (OSPR)
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From page 105... ...
, epidemiologic studies and surveys, cancer control projects, cancer centers, construction and general medical infrastructure, and education. These extramural programs are categorized under cancer research activities, cancer control, and cancer resource development (National Cancer Institute, 1998f)
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From page 106... ...
The Clinical Trials Cooperative Group program includes 12 groups that annually place approximately 20,000 new patients into cancer treatment protocols. Training and Education NCI's Cancer Training Program supports individual fellowship and career awards and education grants to support the cancer research infrastructure.
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From page 107... ...
NCI FY 1997 PROGRAMS AND RESOURCES ALLOCATED TO ADDRESSING ETHNIC MINORITY AND MEDICALLY UNDERSERVED POPULATIONS NCI categorizes research and training programs relevant to special populations (including ethnic minority and medically underserved populations) into two subgroups.
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From page 108... ...
Among the products of the SEER program relevant to the study of ethnic minority and medically underserved populations is the program monograph entitled Racial/Ethnic Patterns of Cancerin the United States 19881992 (Miller et al., 1996~. This publication provides incidence and mortality data for 13 U.S.
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From page 109... ...
NCI reports that data from this Category I and II study are available for whites, African Americans, and all minority populations combined. NCI is also planning several case-control studies of specific cancers and cohort studies of non-cancerous conditions that are disproportionately prevalent among African-American men using data from the U.S.
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From page 110... ...
NCI questions provide surveillance information on tobacco use and tobacco control attitudes. These data have been used to provide estimates of tobacco use among minority and medically underserved populations and were published in the Journal of the National Cancer Institute in 1996.
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From page 111... ...
Studies Tact Use Datc~bcrses DCCPS sponsors several population-based studies relevant to ethnic minority populations. The Black/White Cancer Survival Study, begun in 1983, investigates the role of "social, behavioral, lifestyle, biological, treatment, and health care factors as contributors to the observed differences in survival" among African-American and white cancer patients (National Cancer Institute, 1998b, p.
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From page 112... ...
Finally, feasibility studies are being conducted to examine patterns of care from several data sources, including the Indian Health Service, to provide more information on American Indian cancer patients, particularly those suffering from colon, lung, breast, prostate, and cervical cancers. Nutrition Studies Epidemiologic and Etiologic Research To address questions about links between dietary patterns and cancer incidence and mortality, particularly among ethnic minority and medically underserved populations, NCI supports a number of nutrition studies.
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From page 113... ...
that are known carcinogens or that may be linked with cancer. NCI supports a number of studies that investigate the physical, chemical, and viral causes of cancer and their disproportionate burdens on ethnic minority and medically underserved populations.
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From page 114... ...
DCEG and pop staff are also studying the relationship of HPV and the etiology of lymphoma, hepatocellular cancer, and cervical cancer in American Indians. DCEG staff are also engaged in studies of occupational exposure to hazardous agents and cancer risk.
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From page 115... ...
Prostate Cancer NCI scientists are studying the relationship between a variety of genetic, biochemical, behavioral, and environmental factors and prostate cancer in two large case-control investigations of African-American and white men in the United States and a sample of men in China at low risk for the disease. In that study vasectomy at a young age and family history are among the risk factors associated with prostate cancer, whereas researchers continue to examine the role of androgen metabolism and other biochemical markers in prostate cancer.
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From page 116... ...
African-American and white women, diet and risk of breast cancer among Asian-American women, and whether racial or ethnic variations in breast cancer incidence and Prognosis are attributable to various exogenous mutagens. 1 0 to Cervical Cancer The incidence of cervical cancer is disproportionately high among African-American, Hispanic, and some Asian-American women.
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From page 117... ...
Environmental Protection Agency and NIEHS, are evaluating stomach cancer and agricultural exposures among African-American and white farmers in North Carolina and Iowa in the Agricultural Health Study. To encourage further research in this area, NCI, along with NIDDKD, NIAID, the NIH Office of Research on Minority Health, and the American Digestive Health Foundation, recently issued an RFA on Helicobacter pylori and its relationship to digestive diseases and cancer, with an emphasis on research related to minority populations.
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From page 118... ...
46~. NCI's definition of cancer control research attempts to reflect this view: "cancer control research is now defined as basic and applied research in the behavioral, social, and population sciences to create or enhance interventions that, independently or in combination with biomedical approaches, reduce cancer risk, incidence, morbidity, and mortality" (National Cancer Institute, 1998b, p.
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From page 119... ...
Improved cancer-risk communication in this study is expected to lead to reduced smoking rates and increased rates of use of screening mammography among African Americans. Finally, the Enhancing Cancer Control in a Community Health Center project assessed the effectiveness of patient-, physician-, and system-directed interventions aimed at promoting the early detection of breast and cervical cancers and smoking cessation in a predominantly African-American population.
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From page 120... ...
NCI reports that although this Category II initiative is aimed at all populations in the targeted states, those groups with elevated smoking rates relative to that for the majority population, as well as those groups "that have displayed slower rates of decline (e.g., women, youth, the medically underserved, the less educated, and several ethnic minority populations) ," will receive special focus (National Cancer Institute, 1998b, p.
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From page 121... ...
The Treatwell 5 A Day Worksite Nutrition Intervention in Massachusetts serves a population that is approximately 33 percent African American and 33 percent Hispanic with a work-site intervention and family involvement component to assess their synergistic effects. The program is sponsored collaboratively by an NCI-supported comprehensive cancer center, the state health agency, cooperative extension, and industry.
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From page 122... ...
Chemoprevention Trials NCI is sponsoring more than 60 chemoprevention trials to test compounds that may block, suppress, or retard cancer. Although none appear to be focused on issues of chemoprevention among ethnic minority or medically underserved populations, NCI provided information on two such trials that are "of extreme importance to several special population groups" and are therefore classified by NCI as Category II studies (National Cancer Institute, 1998b, p.
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From page 123... ...
Colorectal Cancer Screening The South Carolina Colorectal Cancer Screening Study is an NCI-funded Category I study designed to develop new methods of recruiting low-income African-American women into colorectal cancer screening trials and to test literacy and develop culturally appropriate educational materials. Other Screening Studies with Multiethnic Populations NCI funded a large grant for a multicenter project administered by the Northern California Cancer Center, Pathways to Screening in Four Ethnic Groups.
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From page 124... ...
Of these, 83 percent were white, 10.8 percent were African American, 2.5 percent were Hispanic, 1.4 percent were Asian or Pacific Islander, 0.1 percent were Native American, and 2.1 percent were of unknown racial or ethnic backgrounds. Extrc~murcr1 Cliniccr1 Tricks CCOP CCOP links patients and community-based physicians with researchers at clinical cooperative groups and cancer centers, thereby providing cancer patients, their physicians, and researchers with access to NCI-approved clinical trials and state-of-the-art care.
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From page 125... ...
but adds that recruitment of minority and underserved populations remains a "special focus" of recruitment efforts (National Cancer Institute, 1998b)
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From page 126... ...
In some cases, significant gains have been made in technologies for the detection and treatment of cancers that disproportionately affect ethnic minority and medically underserved populations. Few examples of basic research at NCI dedicated to examinations of potential differences in underlying biological or genetic mechanisms among population groups exist, however.
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From page 127... ...
ICIC is also sponsoring a pilot project in seven Maryland public libraries to increase the awareness and use of CancerNet in these settings, especially among individuals who are less likely to have access to computer resources at home or work. Cancer Information Service Branch The Cancer Information Service Branch oversees CIS, a national information and education network and toll-free telephone service that provides information to individuals and communities about recent developments in cancer research, prevention, and treatment.
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From page 128... ...
Patient Education Branch The Patient Education Branch (PEB) of OCICE is involved in the development, implementation, and promotion of educational programs for persons living with cancer and their families, including culturally tailored education and outreach services for minority and medically underserved populations.
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From page 129... ...
Among those programs in FY1996 listed as "100 percent" relevant to minority populations, Hawaii's CIS received $393,000 for outreach activities targeted to Native Hawaiians, $250,000 each was allocated to the development of nutrition education materials targeted to African Americans with low levels of literacy and to community-based education projects directed at urban African-American residents, and $150,000 was allocated to the development and dissemination of culturally appropriate messages and materials for American Indians, Native Alaskans, and Native Hawaiians. Outreach Activities End Community Education NCI has placed a great deal of emphasis on three leadership initiatives to support minority outreach, research, and cancer control efforts.
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From page 130... ...
NHLIC's: En Accion, an NCI cooperative agreement with the Baylor College of Medicine, is a theory-based, research-oriented program combining national and regional health expertise with grassroots community leadership to reach the major Hispanic populations in six cities across the country. The project initiated the first comprehensive epidemiologic assessment of cancer risk factors among these Hispanic and Latino population groups and has developed state-of-the-art cancer prevention and control strategies tailored to those diverse Hispanic populations.
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From page 131... ...
For example, the small percentage of ethnic minority health care professionals and researchers has been identified as a significant barrier to the participation of ethnic minorities in clinical trials (Swanson and Ward, 1995~. Further, such researchers are often able to address cultural and linguistic considerations in the conceptualization of research on ethnic minority populations and the interpretation of research findings.
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From page 132... ...
Furthermore, NIH gives priority to projects involving African Americans, Hispanic Americans, American Indians, Alaska Natives, and Pacific Islanders. The exclusion of Asian-American groups from these programs appears to reflect NCI's belief that Asian-American scientists are well represented within the cancer research field.
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From page 133... ...
This award, available to faculty members at minority health professional schools, is offered to promote independent cancer research. · ClinicalInvestigatorAwardforResearch on SpecialPopulations.
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From page 134... ...
The objective of the award is to "broaden the experience of faculty members at minority schools, to increase the pool of biomedical and behavioral investigators in cancer research, and have graduate and undergraduate students, most of whom will be minority individuals, become more cognizant of research opportunities in cancer research" (National Cancer Institute, 1998b, p.
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From page 135... ...
. NCI reports that several programs, in addition to the ones reported above, have been designed specifically to expand opportunities for minority researchers or to address research questions critical to minority and medically underserved communities.
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Funding for Extramural Research Relevant to Ethnic Minority and Medically Underserved Populations NCI reports that 127 extramural awards were made in FY 1997 to address the needs of specific special populations, including some of the research projects summarized above. "Special populations" include ethnic minorities, medically underserved groups, elderly people, blue-collar workers, and people living in rural areas (see Chapter 2~.
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From page 137... ...
of Awards Award Amount F312$30,814 F32128,600 K073161,095 N01914,408,361 P014704,346 P3081,307,744 P502367,519 R015917,514,524 R03121,297,779 R13150,000 R25121,445,109 R291132,937 R432199,493 R4431,022,700 U0143,967,931 U1051,175,872 Total1 28 43,903,1 68 SOURCE: National Cancer Institute. 137 Among these awards, NCI reports that 59 RO1 awards the principal NIH research mechanism for investigator-initiated awards totaling more than $17.5 million were provided.
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From page 138... ...
ALLOCATION OF NCI RESOURCES FOR RESEARCH ON ETHNIC MINORITY AND MEDICALLY UNDERSERVED GROUPS The summaries of programs of research at NCI relevant to minority and underserved populations presented above include information regarding specific funding amounts, where available. Attempts to estimate the overall percentage of the NCI budget that has been allocated to the study of minority and medically underserved populations is difficult, in part because many basic and applied research programs that are geared to improving cancer prevention, treatment, and control among general populations may reap benefits for minority and medically underserved groups.
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From page 139... ...
For example, if a clinical trial research grant is funded at a total of $1 million and if 30 percent of the patients in the trial are ethnic minorities, $300,000 is counted toward total institute expenditures on minority health. No such calculations or figures are reported for medically underserved populations.
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From page 140... ...
NCI reports that it allocated more than $124 million for research and training programs relevant to cancer among ethnic minority and medically underserved populations. This figure represents approximately 5.25 percent of the total NCI budget.
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From page 141... ...
. Of these, NIEHS reports that 71 awards are relevant to minority and medically underserved populations, in that the awards specifically target minority or low-income communities or the research topic disproportionately affects minority and medically underserved populations.
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From page 142... ...
Community-Bcrsed Prevention/Intervention Research in Environmentcr1 Health Science This initiative aims to implement culturally relevant prevention and intervention activities among economically disadvantaged and underserved populations that are adversely affected by an environmental contaminant. It is intended to foster refinement of scientifically valid intervention methods, whereas it also strengthens the participation of the affected communities in this effort.
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From page 143... ...
NIEHS manages and evaluates the part of the study devoted to noncancer endpoints and has assisted in recruiting African Americans into the study population. This study examines, in part, the unique risks to rural African Americans and other minority populations exposed to pesticides.
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From page 144... ...
A large proportion of medically underserved and economically disadvantaged citizens reside near brownf~elds. Mississippi Deltcr Project The Mississippi Delta Project is a collaborative effort of government, academia, grassroots organizations in communities, and local and state health agencies to address environmental contamination in the Mississippi Delta Region, one of the poorest regions in the country and a region that is greatly affected by environmental pollution.
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From page 145... ...
This research focuses largely on cancer associated with AIDS and neoplastic complications of HIV infection, notably Kaposi's sarcoma, but also includes basic studies of the abnormal proliferation of immune cells and immune responses to cell proliferation. Given that HIV infection disproportionately affects ethnic minority populations, particularly African-American and Hispanic communities, NIAID's portfolio of research in this area is highly relevant to the overall NIH effort to address cancer among minority and medically underserved populations.
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From page 146... ...
Among the patients enrolled in the Adult AIDS Clinical Trials Group in 1996, for example, 35 percent were African American and 25 percent were Hispanic. Three institutions serving predominantly minority communities were originally funded in 1993 to assist in minority accrual to these trials.
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From page 147... ...
In particular, MINSAC has conveyed concerns regarding the underrepresentation of minorities in tenure, tenure-track, and postdoctoral positions within NIAID's intramural research program, resulting in the creation of additional lines to attract minority scientists. In addition, MINSAC has initiated the development of a minority constituency catalog, including minority scientists, institutions, and organizations, to assist in the identification of qualified minorities to participate in the NIH peer-review system.
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From page 148... ...
Before FY 1997, NIDDKD offered RFAs for studies of the regulation of prostate growth, the molecular epidemiology of prostate carcinogenesis, clinical trials of medical therapy in benign prostatis hyperplasia, hormonal regulation of breast-specif~c growth factors, and other studies of cancers that disproportionately affect ethnic minority populations. National Heart, Lung, and Blood Institute NHLBI reported a dramatic increase in cancer-related research expenditures from FY 1985 to FY 1997.
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From page 149... ...
NHLBI reports that before FY 1997 it did not support any cancer research relevant to minority and medically underserved populations. According to NHLBI Director Claude Lenfant, "The NHLBI does not have any processes for establishing priorities for cancer-related research among minority and medically underserved populations.
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From page 150... ...
The Center's initial objectives include the recruitment of African-American families for genomic research; the development of standardized protocols for the collection of genetic, clinical, and epidemiologic data; and the establishment of core facilities for the isolation, characterization, and storage of cells and DNA for study. Specific projects emerging from this collaboration include a study of sibling pairs with non-insulin-dependent diabetes mellitus in West Africa, genetic linkage studies of hereditary prostate cancer among African Americans (which has also received research support from NCI)
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From page 151... ...
As a result, model programs in one or more institutes are not replicated by other ICDs where indicated, some areas of research emphasis receive greater attention than others, and overall funding to address the needs of minority and medically underserved populations is inadequate. Several recommendations are therefore indicated: Recommendation 3-1: The Office of Research on Minority Health should more actively serve a coordinating, pl;ammg, and facilitative function regarding research relevant to cancer among ethnic minority and medically underserved populations across relevant institutes and centers of NIH.
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From page 152... ...
and strategies to overcome them. Although the committee does not seek to imply that NCI's research resources should be allocated entirely on the basis of likely etiologic factors, it is noteworthy that the NCI division with primary responsibility for funding behavioral and population-based research, DCCPS, allocated approximately $21 million to "minority health and assistance programs" in FY 1997 (as noted above, this figure is based on a percent relevancy calculation, which suggests that many projects were not specifically targeted to ethnic minority and medically underserved populations)
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From page 153... ...
Recommendation 3-6: NIH should increase its efforts to expand the number of ethnic minority investigators in the broad spectrum of cancer research to improve minority health research. These efforts should (1 )
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