Strategic Investments In

Overcoming Cancer Health Disparities

Our Goal Overcome the unequal burden of cancer experienced by various population groups by discovering the fundamental causes of cancer health disparities, developing effective interventions to reduce those disparities, and facilitating intervention delivery.

Some of our greatest opportunities for reducing the burden of cancer reside with our efforts to overcome cancer health disparities. Research studies have provided definitive evidence that equal treatment at the same stage of disease yields equal outcomes across all populations. By providing universal access to the currently tested and available interventions for the prevention, early detection, and treatment with follow-up for breast, cervical, and colorectal cancers, we could see a dramatic reduction in cancer mortality. Similar improvements would occur for other types of cancer within minority and medically underserved populations with consistently applied interventions for tobacco control and energy balance and equal access to clinical trials and state-of-the-art cancer care.

As emphasized by the Trans-HHS Cancer Health Disparities Progress Review Group in their March 2004 report, collaborations among Federal, State, and local decision makers are needed to facilitate the development and adoption of policies to eliminate health care access barriers and to promote quality health education and prevention strategies that lower the risk of cancer. We know that disparities occur at the local level and that the reduction of these disparities depends on community participation. NCI has established the Community Networks Program to focus on developing strategies to help communities achieve these objectives. Communities, caregivers, and researchers must form strong alliances and explore creative solutions for developing culturally competent venues for service delivery. Community-based participation must be an integral part of the planning, development, and implementation of solutions to bring research advances to all populations. This cross fertilization will build synergism and ensure stronger, more dynamic alliances for overcoming cancer health disparities.

Determining the Underlying Causes and Extent of Cancer Health Disparities

One of our objectives at NCI is to support research to better understand and address the causes of cancer health disparities. Studies in epidemiology and the biology of aging aid in the identification and characterization of the causes of cancer among various population groups. (See Integrative Cancer Biology, and Molecular Epidemiology.) Linking this knowledge to the effects of poverty, culture, and social injustice is a critical next step to gain a full understanding of and be able to adequately address cancer health disparities. While health disparities have historically been framed in terms of racial and ethnic categories, recent research has dispelled the biological basis of racial categories. Scientists have provided strong evidence that racial classification is a social and political rather than a biological construct. However, these classifications may act as indicators or surrogates for social injustice, particularly as they relate to factors such as low economic status, cultural generalizations, and perceived genetic similarities. With sufficient resources for these studies in Fiscal Year 2006, we will:

Continue to examine relationships between genetics and race or ethnicity in order to inform the proper use of these variables in research, through a partnership with the National Human Genome Research Institute.
Conduct think tanks to synthesize the anthropological, historical, social, biological, and medical literature regarding race, ethnicity, and genetics and expand our understanding of how health disparities develop. These think tanks will be conducted collaboratively with experts from the extramural community and the National Human Genome Research Institute.
Conduct multidisciplinary intervention studies on disparities and the economics of cancer, access to cancer treatment and prevention trials, and other cancer control issues such as diet and physical activity, in collaboration with the NIH Office of Behavioral and Social Sciences Research and the Agency for Healthcare Research and Quality.
Expand epidemiologic studies exploring racial and ethnic cancer disparities and establish new approaches for data collection and sharing to ensure cross-cultural equivalence and the use of variables such as race, ethnicity, and socioeconomic status in the study of cancer.
Fund and conduct basic, clinical, and epidemiologic studies jointly designed with community groups, including the Community Networks Program and existing Federal clinics and pilot programs to understand reasons for disparities in cancer risk, including racial/ethnic, socioeconomic, cultural, environmental, and geographic factors.
Foster community studies on individual behaviors and environmental factors to advance knowledge about specific local populations.
Translate national health survey questions so that they can be administered among speakers of Spanish, Chinese, Vietnamese, Korean, and other languages.
Continue support for the newly created Cancer Council of the Pacific Islands, a community-based team comprised of health care leaders who can articulate the cancer health needs of indigenous people in each of the six U.S. associated jurisdictions of the Pacific Rim.
Establish a Federal Task Force with representatives from the Cancer Council of the Pacific Islands, NCI, NIH, and other Federal agencies with programs and resources dedicated to the Pacific Rim, to collaborate in strengthening and sustaining community capacity for addressing cancer health disparities.

Evaluating Promising New Interventions

Our investments in new strategies for cancer interventions must be tested and applied across various populations in a culturally appropriate and community-specific manner. To do this, we first need to draw on science-based knowledge about the causes and variables contributing to health disparities while developing interventions. Once developed, it is critical to assess the efficacy of these interventions across all relevant population groups in terms of reduced prevalence of risk factors, incidence, and mortality and improved survival and quality of life. With additional resources in Fiscal Year 2006, we will:

Support innovative scientific research to assess risk and other aspects of behaviors associated with the specific sociocultural environments of cancer patient populations and develop interventions tailored to cultural and geographic influences.
Support tobacco use prevention and cessation research and intervention development for underserved and understudied youth and young adults.
Support observational and intervention research that focuses on cancer survivorship in medically underserved, low income, ethnic, and minority populations. This research will cover access to and quality of care; the incidence of side effects and management of long-term health; quality of life; health behaviors such as diet, exercise, and tobacco use; and the socioeconomic, physical, and emotional burdens experienced by survivors, family members, and care givers.
Test community-based interventions in new settings to determine their efficacy and potential to be replicated across populations in a culturally appropriate manner.

Collaborating for Action

NCI also continues to support collaborations among investigators to facilitate research, translation, and application of interventions such as screening, early detection, and treatment services and access to timely and accurate cancer information through community-based programs. These efforts build on partnerships with existing NCI-supported centers, networks, and consortia and pilot programs such as the Patient Navigator Program. With new resources in Fiscal Year 2006, we will strengthen and expand these relationships to provide valuable tools for reducing cancer health disparities. We will:

Fund a minimum of two additional Community Networks to Reduce Cancer Health Disparities and support research to expand the use of proven cancer interventions in minority and other underserved populations not yet reached by the program.
Support partnerships and international collaborative studies on the social determinants of cancer and cancer disparities through supplements to the NCI-supported Centers for Population Health and Health Disparities.
Support the development and implementation of a tobacco and health disparities research network for advancing the understanding of tobacco-related disparities and translating that knowledge into practical use by communities.
Continue to support, in collaboration with the National Institute on Aging, research partnerships with NCI-designated Cancer Centers to improve early detection, diagnosis, prognosis, treatment, and survivorship in persons older than 65.

Training Minorities for Cancer Care and Research

Training programs for minority healthcare providers and scientists, such as the Comprehensive Minority Biomedical Program, will increase the number of people prepared to address cancer health disparities in their programs and communities. With increased resources in Fiscal Year 2006, we will:

Develop, implement, and evaluate education and training programs designed to create a diverse and culturally competent research and cancer care workforce.
Support the development of training and workshops designed to diversify the cadre of mid-career level cancer investigators, expand their understanding of the characteristics of different cultures, and apply that knowledge to research for improving the health of specific populations.
Create collaborations between the Minority Institution/Cancer Center Partnership Program and the Community Networks to Reduce Cancer Disparities for the creation of joint health disparities training programs.

Overcoming Cancer Health Disparities Budget Increase Request for Fiscal Year 2006
Determining the causes & extent of cancer health disparities Studies/think tanks on genetics & race/ethnicity Multidisciplinary intervention studies New approaches for data collection & sharing Community-based research & partnerships Studies of & support to specific population groups	$19.00 M
Evaluating promising new interventions Tobacco cessation Survivorship Culturally appropriate interventions	10.50 M
Collaborating for research, translation, & application Social determinants of disparities Tobacco-related disparities Interface of aging & cancer	10.50 M
Training minorities for cancer care & research Diversity in workforce Cultural competence	3.00 M
Management & Support	.65 M
Total	$39,15M

Charting the Course for Overcoming Cancer Health Disparities

Cancer health disparities occur within the broad context of human circumstances, including substandard housing, poor educational opportunities, adverse environmental exposures, and limited access to quality health care. Viewing health disparities through the historic and present-day lens of inequity and social injustice reveals a complex problem.

Overcoming cancer health disparities is more than a priority goal of the NCI. It is the will of the Nation. In 2002, the President of the United States and the Department of Health and Human Services charged a group of experts with reviewing the status of health disparities and charting a course toward closing the gap using cancer as the model. In its landmark report, Making Cancer Health Disparities History, the Trans-HHS Cancer Health Disparities Progress Review Group (CHD PRG) enthusiastically endorsed a "Call to Action" consisting of an integrated set of forward thinking recommendations to be implemented by the Department and its agencies.

Several of the CHD PRG recommendations are addressed in NCI's planned investments for Fiscal Year 2006. "New approaches for data collection and sharing," as recommended by the PRG, will be developed via NCI-supported epidemiologic studies to ensure cross-cultural equivalence and the appropriate use of variables such as race, ethnicity, and socioeconomic status in the study of cancer. Community Networks to Reduce Cancer Health Disparities will "support the development of sustainable community-based networks for participatory research." The Tobacco and Health Disparities Research Network will research, develop, and "implement evidence-based tobacco control strategies" on a large scale. Training programs co-sponsored by minority institutions and the Community Networks to Reduce Cancer Health Disparities will support the creation of a "diverse and culturally competent cancer care workforce."

The Progress Review Group has charted a course for overcoming cancer health disparities throughout our Nation. With sustained resources and careful planning, NCI will continue to lead the way toward achieving this goal to make cancer health disparities history.

Preventable Cancer Incidence and Mortality Plague Specific Population Groups

Distinguished by race/ethnicity, gender, age, socioeconomic status, geographic location, occupation, and education, underserved population groups across the United States suffer disproportionately high cancer incidence and mortality rates for a variety of reasons. These individuals are significantly more likely than the overall U.S. population to:

Be diagnosed with and die from preventable cancers.
Be diagnosed with late stage disease for cancers detectable at an early stage through screening.
Receive either no treatment or treatment that does not meet currently accepted standards of care.
Die of cancers that are generally curable.
Suffer from terminal cancers in the absence of adequate pain control and other palliative care.

Dr. Harold P. Freeman, Director of the NCI Center to Reduce Cancer Health Disparities

See "A Lion in the House"

Across all racial and ethnic groups, the five-year survival rate is more than 10 percent higher for affluent populations than for persons who live in poorer areas. Screening for colorectal, female breast, cervical, and prostate cancers is widely recommended and practiced. Yet, in high poverty areas, the proportion of cancers diagnosed in early, more treatable stages versus those at more advanced, less treatable stages is lower than in low poverty areas. For example, white men in Kentucky, a largely rural state with high poverty levels, are more likely to die from cancer than white men in any other U.S. state. A recent comprehensive review of treatment response for people in poorer economic groups documented substantial differences in receipt of optimal treatment, including definitive primary therapy, adjuvant therapy, conservative surgery, and follow-up after potentially curative treatment.

Recent information on cancer incidence and death rates may reflect socioeconomic characteristics of large populations within racial and ethnic minority groups. African Americans have the highest death rate from all types of cancers combined and from malignancies of the lung and bronchus, colon and rectum, female breast, prostate, and uterine cervix of all racial or ethnic groups in the United States. Vietnamese women experience invasive cervical cancer, largely preventable by screening, at a rate four times as high as all Asian American and Pacific Islander populations combined. Some Asian populations have nasopharyngeal and stomach cancer rates that are unusually high. And Hispanics have had incidence rates of liver and intrahepatic bile duct cancer that were more than 50 percent higher than in the overall population.

Close to 60 percent of all new cancers and 70 percent of deaths from cancer are in persons older than 65, another underserved population. The economic burden of cancer is also taking its toll. As our Nation's population ages, more people will get cancer. Meanwhile, the costs of cancer diagnosis and treatment are on the rise. The combination of these trends will accelerate a rise in the costs of cancer treatment and exacerbate the impact of cancer on people with limited resources.

Individuals affected by cancer bear other burdens as well. Those who have cancer or who must care for someone with cancer are often unable to maintain employment or devote time to other family members. Cancer is clearly much more than a medical problem. It is a serious socioeconomic dilemma.

Patient Navigator Programs Provide Encouragement and Hope to Cancer Patients

There are too many people who receive a cancer diagnosis either too late for effective early treatment or with limited personal resources to take advantage of the quality cancer care that is available today. The diagnosis itself can be overwhelming, but when coupled with seemingly insurmountable infrastructure barriers, it can destroy motivation to regain health. NCI is piloting an innovative program for placing patients in contact with "patient navigators" who help individuals and their families work with an often complex healthcare system.

Patient navigators are experienced advocates from local communities – e.g., lay people, social workers, and nurses – who are able to communicate credibly with the patients. They work with vulnerable or disadvantaged people to help them obtain accurate information on diagnosis and treatment procedures, access to hospitals and clinics, guidance on financial assistance, and help with tracking their records and obtaining prescriptions. In some cases they also arrange for language translation, travel, social support, or religious counseling.

In support of these programs, NCI is initiating an educational program for patient navigators to enhance their knowledge of the clinical trial process, how trials are designed, and the clinical trial as an option in health care. The goal is to more effectively provide this treatment choice to underserved and minority communities. In addition, information will be provided about how to learn about the clinical trials that are available, both at NCI and at NCI-supported sites, and how to access them.

Newly piloted Patient Navigator Programs in Rapid City, South Dakota, and Laredo, Texas, are supplemented with funds from NCI to serve large Native American and Hispanic communities, respectively, each with high poverty rates. Evaluations of these programs will help to identify successful elements, attract collaborators, and model other services and programs to reduce the devastation of cancer among older, minority, and other medically underserved populations.

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