. "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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has enjoyed a productive collaboration with NIH regarding breast cancer education and survival issues among African-American women … [F]ederal agencies, generally, have been particularly supportive in helping to communicate research data to minority communities, in supporting education and early detection in underserved populations, and in addressing to some extent other overall survival needs of cancer victims."
She added, however, that NIH must improve its record with regard to the accrual of minority populations in clinical trials, in establishing collaborations between comprehensive cancer centers and historically black medical schools, and in increasing the participation of minorities in cancer review panels (see below).
Venus Gines noted that in the Latino culture, feelings of fatalism regarding cancer are high: cancer is viewed as a "death sentence." This fatalism prompted Gines to seek more information regarding her breast cancer diagnosis of 6 years ago. She found very little information in Spanish, her native language. Much of the information was merely translated from English and contained little information about cancer in Latinos. "In order for me to get the important data that are necessary for scientists to find out about Latinos and breast cancer, we need people who are of the culture who can help."
Gines developed Mi Nueva Esperanza (My New Hope), which provides education regarding breast cancer to Latina women in the form of a picture book with writing in clear, simple Spanish. More than 3,000 copies have been distributed nationwide, including in migrant worker camps. This effort was supported in collaboration with the American Cancer Society.
Gines also organized a health fair in the Atlanta, Georgia, area, in collaboration with Hispanic community organizations. This health fair offered clinical breast examinations and mobile units to provide mammograms and Pap smears. Child care was provided, and other barriers to participation were addressed.
Lucy Young founded CACA after finding little information in her native language as she battled breast cancer. In addition to helping Chinese-American cancer survivors to develop support networks, the group sponsors educational fora and develops and translates educational materials. CACA also offers free home care and free transportation services to low-income cancer patients. CACA was the first of the 3,500 local units sponsored by the American Cancer Society to focus on the needs of Asian American populations.
"Through my experience, I realized one thing," she stated, "that in suffering, one can sometimes discover one's life potential, as well as how to develop it. Ten years ago when I learned I had breast cancer, I asked God, 'Why? Why me? Why now?' But today, I know the answer."