Susan G. Komen Twin Tiers Region Executive Summary
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SUSAN G. KOMEN® TWIN TIERS REGION EXECUTIVE SUMMARY Acknowledgments The Community Profile report could not have been accomplished without the exceptional work, effort, time and commitment from many people involved in the process. Susan G. Komen® Twin Tiers Region would like to extend its deepest gratitude to the Board of Directors and the following individual who participated on the 2015 Community Profile Team: Patricia Nozell, JD Independent Consultant Report Prepared by: Susan G Komen® Twin Tiers Region 244 West Water Street, Suite E Elmira, NY 14901 607-426-3405 www.komentwintiers.org Contact: Amanda Beecher-Eubanks, Executive Director 2 | Page Susan G. Komen® Twin Tiers Region Executive Summary Introduction to the Community Profile Report Susan G. Komen® Twin Tiers Region (Komen Twin Tiers) is working to better the lives of breast cancer patients in its nine-county service region (Broome, Chemung, Schuyler, Steuben, Tioga and Tompkins counties in New York; Bradford, Potter and Tioga counties in Pennsylvania). Since 2000, Komen Twin Tiers has distributed more than $1,200,000 (up to 75 percent of the Affiliate’s net proceeds) in LOCAL community grants to support patients who face financial barriers in obtaining treatment, early screening for breast cancer and breast cancer education. The remaining income funds research through the national Susan G. Komen Grants Program. The annual Komen Twin Tiers Race for the Cure® in downtown Elmira is Komen Twin Tiers’ signature event and largest fundraiser, raising in excess of $70,000 each year and drawing over 2,500 participants and 100 teams. The seventeenth annual Race was held in May 2015. Komen Twin Tiers is one of a network of Affiliates that have helped to make Susan G. Komen® become a global leader in the fight against breast cancer. The Twin Tiers Region began over 20 years ago with an inspiration. When a favorite LPGA golfer lost her battle to breast cancer at the age of 25, the director of the local women’s professional golf tournament challenged the 12 local hospitals which were tournament sponsors to host a health fair during the event to raise breast cancer awareness. They met that challenge. Their success inspired others, including Dr. Nancy King, a local physician and the Twin Tiers Region founder, to support the cause through public information campaigns, fundraisers and local screenings. By 1999, the movement grew into Komen Twin Tiers, an interstate organization dedicated to raising breast cancer awareness and fighting for a cure. Komen Twin Tiers existed as a Race-only, all-volunteer organization until 2011, when the first Executive Director joined the team. Since then, Komen Twin Tiers has evolved into a year- round organization, with smaller fundraisers and education events joining the Race to raise funds and awareness to fight breast cancer. While the majority of the funds continue to be raised at the Race and while the locus of fundraising is Chemung and Steuben Counties, residents of all nine counties have benefited, with grants spread throughout the region. The addition in 2013 of an Affiliate Coordinator whose primary responsibility is to coordinate the grants program has allowed Komen Twin Tiers to ensure that this goal is met. Komen Twin Tiers has undertaken this Community Profile and generated this Report to highlight the areas within its region that can benefit most from additional support. Komen Twin Tiers will utilize the Community Profile Report in its outreach to educate potential funders, grantees and the public of the gaps in breast health services, with the ultimate goal being to support better services throughout the region. Quantitative Data: Measuring Breast Cancer Impact in Local Communities The purpose of the quantitative data report is to combine evidence from many credible sources and use the data to identify the highest priority areas for evidence-based breast cancer programs. The data provided is used to identify priorities within Komen Twin Tier’s nine-county 3 | Page Susan G. Komen® Twin Tiers Region service region based on estimates of how long it would take each county within the region to achieve Healthy People 2020 objectives for breast cancer late-stage diagnosis and death. The Healthy People 2020 objectives are defined more fully in the Quantitative Data Report section of this Community Profile. As discussed in that section, the Female Breast Cancer Incidence Rate reflects the frequency of new cases of breast cancer among women living in an area during a defined time period. The Female Breast Cancer Death Rate indicates the frequency of death caused by breast cancer among women living in a given area during a certain time period. Like incidence rates, death rates may be calculated for all women or for specific groups of women. Likewise, late-stage diagnosis rates can be calculated, and Komen Twin Tiers has focused on this rate, and trends in this rate in particular, in preparation of this Community Profile. Overall, the Female Breast Cancer Incidence Rate in the Komen Twin Tiers Region was slightly higher than that observed in the US as a whole, but the trend was decreasing slightly more rapidly. The Female Breast Cancer Incidence Rate and trend of the Komen Twin Tiers Region were not significantly different than that observed for the State of New York nor for the State of Pennsylvania. Overall, the Female Breast Cancer Death Rate in the Komen Twin Tiers Region was slightly lower than that observed in the United States as a whole and the death rate trend was not available for comparison with the US as a whole. The death rate of the Komen Twin Tiers Region was not significantly different than that observed for the State of New York nor than that observed for the State of Pennsylvania. Overall, the Female Breast Cancer Late-stage Incidence Rate in the Komen Twin Tiers Region was slightly lower than that observed in the United States as a whole, and the late-stage incidence trend was lower than the US as a whole. The Female Late-stage Incidence Rate and trend of the Komen Twin Tiers Region were not significantly different than that observed for the State of New York. The Female Breast Cancer Late-stage Incidence Rate in the Komen Twin Tiers Region was significantly lower than that observed for the State of Pennsylvania, and the late-stage incidence trend was not significantly different than in the State of Pennsylvania. While the late-stage rate data in the Komen Twin Tiers Region was similar to that of New York and more favorable than in Pennsylvania, the trend in these rates was less favorable in two counties within the Komen Twin Tiers Region, namely, Bradford County, PA, and Tioga County, NY. In addition, because of these less favorable trends, neither county is expected to meet the Healthy People 2020 late-stage diagnosis goal of 41.0 per 100,000 for 13 years or more. Because these trends were less favorable and because these counties are not expected to meet the Healthy People 2020 late-stage diagnosis goal, Komen Twin Tiers chose Bradford County, PA, and Tioga County, NY, as the counties of focus for this Community Profile Report. 4 | Page Susan G. Komen® Twin Tiers Region Health Systems and Public Policy Analysis As described in more depth in the Health System and Public Policy Analysis of this Community Profile Report, the Breast Cancer Continuum of Care (CoC) is a model that shows how a woman typically moves through the health care system for breast care. A woman ideally would move through the CoC quickly and seamlessly, receiving timely, quality care in order to have the best outcomes. Female breast cancer was the “leading type of cancer” in Tioga County in the period 2007-2009. With no hospitals located within Tioga County, NY, and because only very limited screening services are available within the county, patients requiring diagnostic services or, with one exception, treatment must travel outside the county. Due to its rural nature and the lack of convenient public transportation options, this lack of local breast health services poses a significant barrier to care, especially for patients in the northern communities that lie further from major highways. Additionally, there are no programs for survivors available in the county. On the positive side, a mobile mammography van makes periodic visits to Tioga County, a Komen Twin Tiers grantee helps educate and coordinate mammograms, and the New York State Cancer Services Program makes low and no cost screening available to uninsured women otherwise unable to afford it. In contrast to Tioga County, NY, screening mammography is available at four distinct Bradford County, PA locations, three hospitals, including a major cancer center, are located within the county, and a wide range of diagnostic and treatment options are available. Guthrie’s Robert Packer Hospital in Sayre, PA offers a full spectrum of breast health services and includes a specialized diagnostic and breast education facility. Located in the far northern section of the county, this facility is difficult to reach for women from the very rural southern communities. In addition, treatment for lymphedema is not available at this facility. Administered by a Komen Twin Tiers grantee, the Pennsylvania Healthy Woman Screening Program is available to assist uninsured and underinsured women from throughout the county. As in Tioga County, NY, transportation is a barrier to care, however, especially for women in the very rural southern section of the county. In addition, there are no programs specifically for breast cancer survivors in Bradford County, although Guthrie does offer a monthly general women’s cancer support group. Qualitative Data: Ensuring Community Input To best evaluate the experiences of breast cancer survivors in Bradford County, Pennsylvania, Komen Twin Tiers constructed a short (11 question) survey and interviewed key informants at several Bradford County health care providers.