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 ; Bradford, Potter and Tioga counties in ). 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. Komen Twin Tiers chose to utilize a survey in an attempt to reach as many survivors as possible in this predominantly rural county and assess their experiences along the entire Continuum of Care. As the key informants are present and working with breast cancer patients on a daily basis, Komen Twin Tiers values their insights into the conditions facing those affected by breast cancer throughout the Continuum of Care.

5 | Page Susan G. Komen® Twin Tiers Region Together, these methods enabled Komen Twin Tiers to assess the levels and quality of care available in Bradford County, Pennsylvania from the perspectives of caregivers and care recipients, thus rendering a more accurate assessment than it could have achieved had the inquiry been limited to only one of these groups.

Although Komen Twin Tiers received minimal responses to its survey, both the respondents and the key informants interviewed concurred that women in the mountainous southern sections of Bradford County experienced more barriers along the entire Continuum of Care, and breast cancer survivor programming is a need and of interest throughout the county.

As in Bradford County, PA, Komen Twin Tiers constructed a short (10 question) survey and interviewed key informants at several health care providers both within and outside Tioga County, New York, to best evaluate the availability and accessibility of breast health services. Komen Twin Tiers chose to utilize a survey in an attempt to reach as many women over 40 as possible in this predominantly rural county that has only limited health services available and no hospitals, in an attempt to determine their experiences along the entire Continuum of Care. The use of a survey and key informant interviews with breast health care providers, including the operator of the mobile mammography unit that services Tioga County, enabled Komen Twin Tiers to assess the availability and accessibility of breast health services in Tioga County.

Despite limitations of the data, with no surveys completed and returned, it does appear that breast health services are less available and accessible in the rural northern communities of Tioga County than in the southern communities, which are linked by a major highway to breast health facilities in adjacent Broome County, NY, and Bradford County, PA. Given that there are limited public transport options in the county and that for many Tioga County residents, in particular those in the northern communities, the nearest primary or specialized health care provider can be up to 30-60 miles away, transportation is a key barrier to care. These shortcomings most likely play a role in the increase in late-stage diagnoses identified in Tioga County.

Mission Action Plan

Following analyses of the quantitative data, the health facilities present in the Twin Tiers Region and particularly in the two target counties, and a review of the qualitative data for these counties, Komen Twin Tiers discovered several service gaps in each of the target counties. As highlighted in the Health System Analysis portion of this Community Profile, Bradford County, PA is home to one of the largest health care providers in the Komen Twin Tiers Region. However, there is a lack of breast cancer survivor programming available in Bradford County, and breast health services generally are less accessible in the predominantly rural southern portion of the county. There has been a rise in late-stage diagnoses in Bradford County, PA.

In contrast, Tioga County, NY, has almost no breast health services available within the county. The limited public transportation options available for travel to and from health care providers in neighboring counties, especially from communities situated in the northern section, are further

6 | Page Susan G. Komen® Twin Tiers Region barriers to care for Tioga County residents. Like in Bradford County, late-stage breast cancer diagnoses are on the rise in rural Tioga County, NY.

Komen Twin Tiers has identified the following priorities to address the barriers to care in Tioga County, NY, namely, better support for all breast cancer patients and survivors throughout the Continuum of Care, an increased presence for Komen Twin Tiers, especially in the northern communities, and increased transportation options, and information about those options, particularly for those patients from the more northern section of Tioga County. With these priorities in mind, Komen Twin Tiers has determined to increase its visibility in the county and focus on finding, and funding, a grantee to address the transportation issues, especially in the northern communities.

Komen Twin Tiers has identified the following priorities to address the problems present in Bradford County, PA, namely, better support for all breast cancer patients and survivors throughout the Continuum of Care, and an increased presence for Komen Twin Tiers, especially in the southern communities of the county. With these priorities in mind, Komen Twin Tiers has mapped out a timeline to increase its presence in the county, has tasked a board member with Survivor issues and programming, and intends to seek a grantee within Bradford County to focus on Survivor programming.

To summarize, for Bradford County, PA, Komen Twin Tiers has identified the following problem/need, priorities and objectives:

Problem/Need Statement: Although Bradford County, PA is home to one of the largest health care providers in the Komen Twin Tiers region, there is a lack of breast cancer survivor programming available, and breast health services generally are less accessible in the predominantly rural southern portion of the county. There has been a rise in late-stage diagnoses in Bradford County, PA.

After assessing the results of the Quantitative Data, which indicate that the incidences of late- stage breast cancer diagnoses are on the rise in Bradford County, PA, and the Qualitative Data, which highlight the reasons that could be contributing to that result, Komen Twin Tiers has identified the following mission priorities:

Priority 1: Increase programming and support available to all breast cancer patients and survivors in Bradford County PA throughout the Continuum of Care;  Objective 1: Designate two Board Members as Mission co-chairs, with focus on both Survivors and Education (accomplished in late 2014). Create a Mission Committee that will include a survivor mentorship program in 2015;  Objective 2: In 2015, hold one or more Survivor focus group sessions in Bradford County to assess the specific programs of interest;  Objective 3: By 2017, develop a partnership with one or more health care providers and/or community organizations operating within Bradford County, and encourage at least one of them to apply for one or more grants focused on Survivor programming.

7 | Page Susan G. Komen® Twin Tiers Region Priority 2: Increase Komen Twin Tiers’ presence and support in Bradford County, especially the very rural, southern regions.  Objective 1: Identify and invite a Bradford County resident to join the Komen Twin Tiers board (already accomplished in 2014)  Objective 2: In 2015, attend at least one public event in southern Bradford County including education materials with Komen Twin Tiers’ staff and board member participation  Objective 3: In 2016, plan at least one public event highlighting Komen Twin Tiers’ mission and presence in Bradford County

To summarize, for Tioga County, NY, Komen Twin Tiers has identified the following problem/need, priorities and objectives:

Problem/Need Statement: Late-stage breast cancer diagnoses are on the rise in rural Tioga County, NY, which has almost no breast health services available within the county and limited public transportation options available for travel to and from health care providers in neighboring counties, especially from communities situated in the northern section.

After assessing the results of the Quantitative Data, which indicate that the incidences of late- state breast cancer diagnoses are on the rise in Tioga County, NY, and the Qualitative Data, which highlight the reasons that could be contributing to that result, Komen Twin Tiers has identified the following mission priorities:

Priority1: Increase breast cancer education, programming and services available to women over 40 residing in predominantly-rural Tioga County, NY;  Objective 1: In 2015, meet with the breast support organizations operating in or providing services to residents of Tioga County, NY to determine how best Komen Twin Tiers can support their efforts;  Objective 2: By 2017, develop a funding priority for organizations providing breast-health education, programming and services in Tioga County.

Priority 2: Increase awareness of transportation options and encourage improvement of transportation options for patients seeking breast health-related services, especially those patients from northern Tioga County, NY;  Objective 1: In 2015, identify and meet with at least one community organization to determine how best to address transportation needs from northern Tioga County;  Objective 2: By 2017, encourage and help one or more community organizations to apply for a Komen Twin Tiers grant to address transportation needs from northern Tioga County;

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Priority 3: Increase Komen Twin Tiers’ presence in Tioga County, NY.  Objective 1: In 2015, attend at least one public event in Tioga County, NY including education materials with Komen Twin Tiers’ staff and board member participation;  Objective 2: In 2016, plan at least one public event highlighting Komen Twin Tiers’ mission and presence in Tioga County, NY.  Objective 3: In 2016, seek out volunteers and potential board members at Komen Twin Tiers’ sponsored and other health-focused events within Tioga County, NY.  Objective 4: By 2017, identify and invite at least one Tioga County, NY resident, or an individual providing breast health services in Tioga County, NY, to join the Komen Twin Tiers’ board.

Disclaimer: Comprehensive data for the Executive Summary can be found in the 2015 Susan G. Komen® Twin Tiers Region Community Profile Report.

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