. "4 Evaluation of Priority Setting and Programs of Research on Ethnic Minority and Medically Underserved Populations at the National Institutes of Health." The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press, 1999.
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health promotion organizations, as well as testimony from an individual at an academic center who has spearheaded several community-based health efforts, primarily in low-income, rural communities. These individuals were asked to comment on how well the NIH research results are communicated and applied to cancer treatment and prevention programs for minority and medically underserved communities.
Many of these individuals spoke from personal experiences as cancer survivors who sought information for themselves and their communities and who would address the specific needs that they faced. Zora Kramer Brown is founder and chair of the Breast Cancer Resource Committee, which addresses the prevention and treatment needs of African American women at risk of or living with breast cancer. The organization plans future initiatives to address cancer among African American men. Venus Gines is a 6-year survivor of breast cancer, a community activist from Atlanta, Georgia, and a member of the NCI Director's Consumer Liaison Group. Lucy Young is a 10-year survivor of breast cancer. After recovery, she founded the Chinese American Cancer Association (CACA) in Flushing, New York, to support and meet the needs of immigrant cancer patients, especially those with language difficulties.
Finally, Barbara Clinton, director of the Center for Health Services at Vanderbilt University, spoke from the perspective of her 17 years of work with community-based health initiatives in Tennessee, Kentucky, Virginia, West Virginia, Florida, Louisiana, and Arkansas. Much of her work involves mobilization and linkage of community resources to address health needs, including the promotion of lay health advisers, the provision of technical assistance to communities, and other efforts to assist low-income and medically underserved populations. Two other individuals with expertise in the survivorship needs of ethnic minority and medically underserved communities, James Williams (executive director of US-TOO, International, an organization focused on the needs of prostate cancer survivors) and Yvette Joseph Fox (executive director of the National Indian Health Board), were invited to discuss their perspectives and work with the committee but were unable to attend.
Zora Kramer Brown noted that African Americans have a greater vulnerability to cancer than the general population. African Americans contract cancer at earlier ages than the majority population and suffer from higher cancer mortality rates. Data are needed, she stated, to understand why these disparities exist: "Is it genetically based? Is it environmentally based? Is it dietarily based? Is it the result of cultural values or belief systems, or is it economically based?" she asked.
Brown stated that "by and large, the National Institutes of Health and other federal agencies have been most supportive of these [community and advocacy] groups. The Breast Cancer Resource Committee, in fact,