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From Cancer Patient to Cancer Survivor: Lost in Transition
American Cancer Society
The ACS is the largest nongovernmental source of cancer research funding in the United States and supports psychosocial and behavioral research. In FY 2003–2004, approximately 17 percent of the total research program was devoted to these areas. The Society’s intramural research program includes a Behavioral Research Center, which is conducting two large population-based surveys of cancer survivors (described above). The ACS Behavioral Research Center is also analyzing data on health-related quality of life of cancer survivors who are Medicare beneficiaries enrolled in managed care plans. The data are from the Medicare Beneficiary Survey, a national survey conducted for the Department of Health and Human Services’ Centers for Medicare and Medicaid Services. Survivorship-related grants that are active through ACS’s extramural program are shown in Box 7-6. The total level of support for these grants is approximately $4 million.
Lance Armstrong Foundation (LAF)
The mission of the Lance Armstrong Foundation is to enhance the length and quality of life of those living with, through, and beyond cancer with activities targeted to cancer survivorship. LAF was founded in 1997 by cancer survivor and champion cyclist Lance Armstrong. By 2005, LAF had awarded more than $9.7 million for 75 grants on the study of testicular cancer and survivorship issues (LAF, 2004, 2005). Survivorship-related awards in 2003 include those related to the effects of physical activity on relieving chronic fatigue and other late effects, educational interventions to reduce breast cancer among Hodgkin’s disease survivors, and long-term follow-up of survivors of Hodgkin’s lymphoma enrolled in trials conducted by the European Organization for Research and Treatment of Cancer (EORTC) Lymphoma Group (LAF, 2004). Awards made in 2004 include those to study follow-up care for African-American breast cancer survivors, the impact of exercise in lymphoma survivors, and the fertility of women following chemotherapy for early breast cancer. Other initiatives will focus on chemotherapy-induced peripheral neuropathy and the psychological late effects of cancer (LAF, 2005).
LAF has received support from CDC to disseminate programs to improve cancer survivorship among African Americans, American Indians, Alaskan Natives, Spanish speakers, and rural Americans. LAF plans to develop and disseminate culturally relevant and linguistically appropriate materials for these groups (CDC, 2004).