Reflections on programs designed to reduce cancer disparities

Authors

  • M. Alfred Haynes MD, MPH

    Corresponding author
    1. Committee on Cancer Research Among Minorities and the Medically Underserved, Institute of Medicine, Washington, District of Columbia
    • Center to Reduce Cancer Health Disparities, National Cancer Institute, 6116 Executive Boulevard, Suite 602, MSC 8341, Rockville, MD 20852-8341
    Search for more papers by this author
    • Fax: (301) 435-9225


  • This article is a US Government work and, as such, is in the public domain in the United States of America.

At the beginning of the twentieth century, infectious diseases were the major causes of death but as the century progressed, epidemiologists noted a major change. By the mid-1900s, the leading causes of death had shifted from infectious diseases, such as pneumonia, influenza and tuberculosis, to chronic diseases, such as heart disease, cancer and stroke.1 In response to these changes in causes of mortality, important changes in national health policy began to occur.

The Public Health Service Act of 1965,2 for example, provided grants-in-aid to support regional medical programs (RMPs) for research and training, as well as for the diagnosis and treatment of these major diseases.3 The RMPs were centered at medical schools and their affiliated hospitals. Their intent was to improve the quality of care for these conditions by establishing linkages between the medical centers and community hospitals.4 There was also a plan to develop a network of regional comprehensive cancer centers, recommended by the President's Commission on Heart Disease, Cancer, and Stroke.5 These centers were established to focus on cancer control, establishing cancer control programs and conducting cancer-related studies at the various centers. The intent was for these centers to be at the forefront of the War on Cancer.

The War on Cancer was declared by the Cancer Act of 1971.6 The Cancer Act brought increased funding for the National Cancer Institute (NCI) and made major changes to previous efforts against cancer. It provided for greater authority for the NCI Director, including making the NCI director a presidential appointee, and created the President's Cancer Panel and the National Cancer Advisory Board. The Act also called for a broad National Cancer Program to coordinate NCI research with federal and nonfederal cancer-related programs. The hope was that the War on Cancer would be won by 1976, and this expectation was strengthened when the NCI later expressed the goal to decrease the incidence of cancer by 50% by the year 2000.

Reports on progress are not always accepted and specialists argued about how much progress had actually been made. In 1998, for example, the American Cancer Society, NCI, Centers for Disease Control and Prevention, and National Center for Health Statistics reported decreases in death rates due to cancer.7 However, the Intercultural Cancer Council challenged this report on the grounds that there had been undercounting of a large percentage of the population, especially among minorities and the poor. Concurrently, Congress noted that despite improvements in cancer care and delivery, a disproportionate burden of cancer was experienced by certain populations. Together these factors prompted legislation authorizing a review by the Institute of Medicine (IOM). The IOM Committee's report, entitled ‘The Unequal Burden of Cancer,’ reviewed the status of cancer research relative to minorities and medically underserved populations, examined how well cancer prevention and treatment programs are disseminated among minorities and medically underserved populations, and examined recruitment of minorities and medically underserved populations to clinical trials.1 The report provided recommendations for the NCI but most importantly, provided evidence for a greater allocation of resources to address the needs of minorities and the medically underserved. In response to the IOM analysis and recommendations, the NCI has made a serious effort to address these issues and effect progress against cancer.

Another important initiative developed around this time was the Special Populations Networks (SPNs) for Cancer Awareness, Research, and Training. The SPNs were intended to foster cancer awareness and community-based educational activities.8 In addition, the Networks aimed to establish an infrastructure around information dissemination activities to support research in cancer control in minority populations and to enable investigators from these communities to compete successfully for research support. The 18 SPNs were designed to build, expand, and surpass previous programs, such as the National Black Leadership Initiative on Cancer (NBLIC),9 the National Hispanic Leadership Initiative10 and the Appalachian Leadership Initiative on Cancer.11 These latter NCI Leadership Initiatives fostered partnerships with concerned individuals, such as researchers, community-based organizations, and community leaders, to begin to address the disproportionate cancer burden experienced within these populations.

The Special Populations Network

The Special Populations Network had several features that made it stand above others. The networks were real partnerships, in which researchers engaged individuals, leaders, and organizations from the community in all aspects of the research process. The result was a significant change in the relationship between researchers and communities. Communities were full partners in the research rather than the objects of research. The networks also recognized the critical importance of building trust.

SPN community partnerships helped to develop cultural competence. Culturally and linguistically appropriate educational materials, for example, which might not otherwise be available, were developed through these partnerships. Minority investigators were also encouraged to pursue ways of reducing cancer health disparities. In addition, the networks produced numerous scientific publications that explore causes of health disparities and ways to reduce these disparities. Most importantly, network infrastructures successfully crossed barriers between urban and rural populations, and the processes used by the networks can serve as a catalyst to help achieve and sustain progress in reducing the cancer problem in these and other communities.

The Community Networks

The Special Populations Networks have accomplished much but there is still unfinished business. There needs to be more work in the areas of policy, access to care, and evaluation, and this will be the work, in part, of the Community Networks Program (CNP). The Special Populations Networks did not completely address the issue of reducing disparities. To provide evidence of reducing disparities, the networks would have needed baseline data for different groups and to demonstrate significant change in incidence, survival and/or mortality. This is not an easy task and usually requires a substantial population size, but it cannot be avoided if one is to make a claim of reducing cancer disparities. To do this, establishing relationships with the major cancer centers, where there is a greater likelihood of access to appropriate statistical advice for evaluation, might be explored. The Community Networks can best build on the foundation of the Special Populations Networks, though it would be wise to avoid making predictions about when the disparities will be reduced.

Certain additional features can be especially helpful to the CNP. Having a supportive Surgeon General who is committed to reducing disparities is an advantage. It is also helpful if the National Institutes of Health is committed to reducing health disparities so that other institutes are following a similar path. It will be helpful if the national health policy is committed to reducing health disparities. This combination of circumstances, together with the strength of the CNPs and the support of the communities they serve, will help to assure unquestioned success in reducing cancer disparities.

Finally, the effort to reduce health disparities is not limited to health professionals. There is now an extensive literature on the roles of social, economic, and environmental factors and their impact on health.12 These resources can also be tapped as a comprehensive effort to reduce the unequal burden of cancer.

Ancillary