Susan G Komen® Upstate New York

SUSAN G. KOMEN® UPSTATE NEW YORK Table of Contents

Table of Contents ...... 2 Acknowledgments ...... 3 Executive Summary ...... 7 Introduction to the Community Profile Report ...... 7 Quantitative Data: Measuring Breast Cancer Impact in Local Communities ...... 7 Health Systems and Public Policy Analysis ...... 16 Qualitative Data: Ensuring Community Input ...... 21 Mission Action Plan ...... 24 Introduction ...... 34 Affiliate History ...... 34 Affiliate Organizational Structure ...... 36 Affiliate Service Area ...... 37 Purpose of the Community Profile Report ...... 39 Quantitative Data: Measuring Breast Cancer Impact in the Local Communities ...... 40 Quantitative Data Report ...... 40 Additional Quantitative Data Exploration ...... 71 Selection of Target Communities ...... 72 Health Systems and Public Policy Analysis ...... 83 Health Systems Analysis Data Sources ...... 83 Health Systems Overview ...... 84 Public Policy Overview ...... 113 Health Systems and Public Policy Analysis Findings ...... 121 Qualitative Data: Ensuring Community Input ...... 125 Qualitative Data Sources and Methodology Overview ...... 125 Qualitative Data Findings ...... 172 Mission Action Plan ...... 181 Breast Health and Breast Cancer Findings of the Target Communities ...... 181 Mission Action Plan ...... 190 References ...... 199

2 | Page Susan G. Komen® Upstate New York November 2017 Acknowledgments

Note: In 2017, four Komen New York Affiliates (Central, Northeastern, Twin Tiers and Western) merged to form Komen Upstate New York. The following report is a compilation of the four previous Komen Affiliate 2015 Community Profile Reports into one report for Komen Upstate New York. Therefore, the level of data collected and the presentation of the data will vary within each region.

The Community Profile Report could not have been completed without the exceptional work, effort, time and commitment of the many people and organizations involved in the process.

Susan G. Komen® Upstate New York would like to extend its deepest gratitude to the Board of Directors and the following individuals who participated on each of region’s 2015 Community Profile Teams.

Central Region Community Profile Team Jessica Bell Director of Affiliate Operations Susan G. Komen Central New York

Gary Brooks, PT DrPH Associate Professor, College of Health Professions Upstate Medical University

Kathleen Flannery Executive Director Susan G. Komen Central New York

Whitney B. Hadley Community Outreach Liaison Susan G. Komen Central New York

Elaine Jacobs Co-Chair, Grants Committee Susan G. Komen Central New York

Deborah E. Moore, MBA, JD Chair, Community Profile Committee Co-Chair, Grants Committee Susan G. Komen Central New York

Mary Ann Sandiford-Day MPH Candidate, CNY-MPH Program SUNY Upstate Medical University

Catherine Shamlian President, Board of Directors Susan G. Komen Central New York

3 | Page Susan G. Komen® Upstate New York November 2017 A special thank you to the following Central Region key informants who provided valuable information and insights included in this report:  Margaret Lorenzetti, Program Coordinator, Cancer Services Program, Ontario, Seneca & Yates Counties, NY

 Jade Cassalia, Case Manager, Cancer Services Program, Seneca County, NY  Katrina Egburtson, Patient Advocate, Finger Lakes Hematology Oncology, Clifton Springs, NY  Jenny Dickinson, Program Analyst, Cancer Services Program, Onondaga County Health Department, Syracuse, NY  Shalanda Graham, Outreach Coordinator, Onondaga County Health Department, Syracuse, NY  Linda Veit, Special Projects Manager, Director of "She Matters," Upstate Cancer Center, Upstate Medical University Syracuse, NY  Mozart Guerrier, Community Engagement Specialist, Upstate Medical University, Syracuse, NY  Martha Chavis-Bonner, Resident Health Advocate for "She Matters," Upstate Medical University, Syracuse, NY  Martha Ryan, Director Western New York Region, American Cancer Society, E. Syracuse, NY  Candice Lucas, Director, Community Health Services & Cancer Services Program of Monroe County, NY and University of Rochester Medical Center  Julie Fugle, Nurse and Outreach Worker, Highland Breast Imaging, Rochester, NY  Holly Anderson, Executive Director, Breast Cancer Coalition of Rochester, Rochester, NY  Donna Dixon, Public Education and Training Outreach Manager, Cancer Services Program of Monroe County and University of Rochester Medical Center  Kim Wynn, Program Manager, Coordinated Care Services, Inc., Rochester, New York

Northeastern Region Community Profile Team Victoria Roggen, MPH Executive Director Susan G. Komen NENY

Debra Sottolano, PhD MBA Liaison to the Office of Health Emergency Preparedness New York State Department of Health Office of Primary Care and Health Systems Management Director of Preparedness Vice President, Komen NENY Board of Directors

Francesca Durand, PhD Assistant Professor of Educational Leadership The Sage Colleges President, Komen NENY Board of Directors

4 | Page Susan G. Komen® Upstate New York November 2017 Diane Butrym, MPH Komen NENY Race for the Cure® Teams Chair

Diane Keasby, RN OCN Community Outreach Nurse St. Peter’s Health Partners

Cindy Pitts Administrative Assistant Susan G. Komen NENY

A special thank you to the following Northeastern Region entities for their assistance with data collection and analyses, as well as providing information included in this report:  Cancer Services Program  Our Past and Current Grantees

Twin Tiers Region Community Profile Team Patricia Nozell, JD Independent Consultant

Western New York Community Profile Team La ‘Tasha Williams, MA Research Associate Department of Family Medicine, Primary Care Research Institute, University at Buffalo

Megan Wilson, MPA Research Associate Department of Family Medicine, Primary Care Research Institute, University at Buffalo

Jessica Hale Intern Department of Family Medicine, Primary Care Research Institute, University at Buffalo

Laurene Tumiel-Berthalter, PhD Director of Community Translational Research Department of Family Medicine, Primary Care Research Institute, University at Buffalo

Elizabeth Kahn, Executive Director Susan G. Komen Western New York

Larissa East, Community Outreach & Administration Susan G. Komen Western New York

Community Engagement Committee  Christy Widman, Roswell Park Cancer Institute, Office of Cancer Health Disparities  Ermelinda Bonaccio, MD, Director, Mammography Center, Roswell Park Cancer Institute  Michelle Wysocki, Program Director, Cancer Services Program of Erie County  May Shogan, Director of International Exchanges and Education Programs, International Institute of Buffalo  Jomary Colon, Esperanza Y Vida  Theresa Moore, Supervising Public Health Educator, Cancer Services Program, 5 | Page Susan G. Komen® Upstate New York November 2017  Rita Hubbard-Robinson, JD, Community Health Education and Outreach Director, ECMC  Colleen Nossavage, Community Relations, WGRZ Channel 2  Robert Moskowitz, MD, retired physician  Mercedes Holloway, Founder, For Our Daughters, Inc.  Olivia Belter, Community Relations, Univera Healthcare  Patricia Stewart, Komen Speakers Bureau  Roland Bittles, Group Ministries  Mary Kay Comtois, United Way of Buffalo and Erie County

A special thank you to the following Western Region entities for their assistance with data collection and analyses, as well as providing information included in this report:  Sharon Faraci, Co-President Breast Cancer Network  Anne Kist, Program Director and Coach, Hope Chest Dragon Boat Team  Patrick O’ Connell, Practice Enhancement Associate, Southern Tier West Regional & Development Board  Breast cancer survivors in Erie, Cattaraugus, and Allegany Counties

Report Prepared by: Susan G. Komen Upstate New York 742 Delaware Avenue Buffalo, NY 14209 Phone: 716-887-2646 Email: [email protected] Website: http://komenupstatenewyork.org/

6 | Page Susan G. Komen® Upstate New York November 2017 Executive Summary

Introduction to the Community Profile Report

Affiliate History Nancy G. Brinker promised her dying sister, Susan G. Komen, she would do everything in her power to end breast cancer forever. In 1982 that promise became Susan G. Komen for the Cure®, launching the global breast cancer movement. Today, Susan G. Komen® is the world’s largest grassroots network of breast cancer survivors and activists.

Susan G. Komen® Upstate New York was officially formed in July of 2017 when four local affiliates in Upstate NY joined forces: Komen Central NY, Komen Northeastern NY, Komen Twin Tiers and Komen Western NY. The four regional offices have working together for months to collaborate and streamline daily administrative functions. While keeping local offices, outreach and events, greater savings and efficiency could be recognized, maximizing the impact on the fight against breast cancer. Each region in Komen Upstate NY has their own unique story on how they became part of the Komen family.

In the early fall of 1990, a small group of women led by Nancy Dunigan, a breast cancer survivor, gathered in the office of local plastic surgeon, Dr. Hadley Falk, to discuss the possibility of creating an organization designed to support the growing numbers of breast cancer survivors in the community. The first meeting for the newly formed Central New York affiliate was held on March 26, 1991, with fifteen people in attendance. In the beginning, the Affiliate’s major focus was education and support. Starting in early summer of 1991, the Affiliate presented Breast Health Awareness programs in many and varied settings, including programs at universities, colleges, businesses, health fairs, community centers, and government agencies from Syracuse to Rochester, Buffalo, Oswego, Utica, Binghamton and surrounding areas. The dream of "having a RACE" became a reality on May 20, 1995. Nancy Dunigan was Chair of the first Central New York Komen Race for the Cure. The 1995 Race for the Cure allowed the Affiliate to award its first grant

® Susan G. Komen Northeastern New York began by hosting the organization’s premier ® fundraising event – the Komen Race for the Cure . The Albany Race for the Cure® began in 1995 with just 900 participants and was held at Washington Park Lakehouse in Albany, New York under the auspices of the Junior League of Albany. The Komen NENY Race grew steadily and in 2002, the Race was moved to the Empire State Plaza to better accommodate its growing size. The NENY was incorporated as a nonprofit in 2000 with a seven-member board and 501- C3 status apart from the Junior League of Albany.

Susan G. Komen® Twin Tiers Region began with an inspiration. LPGA golfer, Heather Farr, lost her battle to breast cancer at the age of 28. Moved by her story, the director of the Corning LPGA Classic challenged 12 local hospitals to sponsor a health fair during the annual tournament to raise breast cancer awareness. Led by Dr. Nancy King, they met that challenge. Their success inspired others to fight for the cause through public information campaigns, fundraisers and local screenings, including a breast cancer walk/run. By 1999 the movement evolved into Komen Twin Tiers, a nine-county, interstate organization dedicated to raising breast cancer awareness and fighting for a cure.

7 | Page Susan G. Komen® Upstate New York November 2017

Through the efforts of a number of committed community leaders and health care providers, the Susan G. Komen® Western New York was formed in 2000. For the first four years, the Affiliate was an all-volunteer organization. Under the excellent leadership of the founding board president, the Affiliate grew to a size that allowed for the employment of an Executive Director, followed shortly thereafter by an Education Coordinator. This allowed the Affiliate to manage as a year-round agency active throughout the community with a variety of events. The founding board members of Komen Western New York prepared a Community Profile and a comprehensive strategic plan was developed to provide immediate focus and future direction for the Affiliate. In response to the need identified in the profile, the Affiliate utilized its diverse personal and professional contacts to organize and implement the first Race for the Cure® in Buffalo in May 2001.

Komen Upstate New York has developed an important and significant grant program in response to the Community Profile. As of 2017, Komen Upstate has distributed over $14.7 million in local community grants to support breast cancer initiatives throughout its 49-county service area for breast cancer outreach and education, support, treatment, and screening. The vast majority of these funds have been raised at the Susan G. Komen Race for the Cure®, held annually in Albany, Buffalo, Elmira, and Syracuse.

The Affiliate has traditionally had two approaches to grant making: small grants and community grants. In 2006, the Western NY Affiliate instituted a small grants program that allowed it to receive grant requests and begin to forge relationships with grassroots organizations on a year- round basis. In 2009, Komen NENY added a small grants program (under $5,000) to fund travel, educational, and conference grants to local nonprofit breast health and breast cancer programs.

Community grants provide larger funding amounts and are awarded once a year. Both large and small grant proposals must provide services within the service area of Upstate New York, and adhere to a rigorous and thorough review process before being submitted to the Board for approval. The overall goal of the grant program is to decrease disparities in care and improve healthcare access for under-served populations.

Komen Upstate New York has funded $14,758,368 in community programs serving Upstate New York’s women and men, while contributing $5,285,182 to Komen research since 1997.

In addition to grantmaking and fundraising initiatives, Komen Upstate is a local leader in the fight against breast cancer. Staff and volunteers attend many community events throughout the year, including health fairs at local companies, events at local universities, breast cancer events held by grant recipients, and other community events.

In 2014, the Komen NENY Region held its first event focused on metastatic breast cancer education in conjunction with Affiliates in other cities. The Western NY regional office has established strong relationships with community partners, such as the New York State Cancer Services Program (CSP) in Erie and Allegany/Cattaraugus Counties, Roswell Park Cancer Institute, WCA Hospital in Jamestown, and many other community partners. Komen has

8 | Page Susan G. Komen® Upstate New York November 2017 supported programs that bring together these partners with direct impact on screening, early diagnosis and treatment.

The Affiliate assumes leadership roles in organizing the Central New York Breast Cancer Network, and in partnering with SUNY Upstate Medical University’s new Cancer Center to develop the “She Matters” program. This unique program uses peer-trained resident health advocates to educate, support, encourage and facilitate mammography screening among women who are over the age of 40 and live in the Syracuse Housing Authority’s Pioneer Homes development.

Affiliate Organizational Structure Under the leadership of the Board of Directors, Komen Upstate NY is composed of up to 21 Board of Director members, two Co-Executive Directors, and 5 Staff Members. The Affiliate’s powerful network of approximately four hundred volunteers continues to lead the fight against breast cancer and are crucial in helping to carry out the mission of the Affiliate. See Figure 1 for the Affiliate organizational structure.

The Board of Directors consists of breast cancer survivors, activists, medical and research professionals as well as community leaders who combine their talents, networks and resources to promote the mission of Susan G. Komen in the Upstate New York community. The Affiliate has a number of Board committees which help to carry out activities. Within each committee there exists a variety of leadership opportunities which may be held by Board members or by general volunteers.

Susan G. Komen believes in empowering women by providing reliable breast health information so they can take charge of their health. To help make that happen, Komen Upstate NY volunteers are available to speak to community groups, corporate organizations and schools. This service is provided at no cost as part of the Affiliate’s mission to spread the life-saving message of early detection to the community. The Speakers Bureau (in the Western NY region) is available to present to organizations or groups on a wide range of breast cancer and breast health issues, including the importance of breast self-awareness techniques. Most of the speakers are breast cancer survivors or medical professionals and lend their personal experiences to the presentation.

9 | Page Susan G. Komen® Upstate New York November 2017

Figure 1. Susan G. Komen Upstate New York organizational structure

Affiliate Service Area The Komen Upstate NY service area borders Canada to the north, Lake Erie to the west, Pennsylvania to the south, and New Hampshire, Massachusetts and Connecticut to the East. The service area includes the following 49 counties (Figure 2). They are:  New York: Albany, Allegany, Broome, Cattaraugus, Cayuga, Chautauqua, Chemung, Chenango, Clinton, Columbia, Cortland, Erie, Essex, Franklin, Fulton, Genesee, Green, Hamilton, Herkimer, Jefferson, Lewis, Livingston, Madison, Monroe, Montgomery, Niagara, Oneida, Onondaga, Ontario, Orleans, Oswego, Rensselaer, Saratoga, Schenectady, Schoharie, Schuyler, Seneca, St. Lawrence, Steuben, Tioga, Tompkins, Warren, Washington, Wayne, Wyoming, Yates  Pennsylvania: Bradford, Potter, Tioga

10 | Page Susan G. Komen® Upstate New York November 2017

Figure 2. Susan G. Komen Upstate New York service area

These counties cover a broad geographical area and include four larger metropolitan centers around Albany in Albany County, Buffalo in Erie County, Syracuse in Onondaga County, and Rochester in Monroe County, as well as large rural expanses. Over 35 percent of the population is listed as rural in the 2010 US Census compared to the US average of 19.3%. Overall, the Komen Upstate New York service area has lower proportions of residents who are foreign-born at 5.2 percent, linguistically isolated and residing in medically under-served areas, compared to New York State. Albany, Erie, Monroe and Onondaga Counties have the highest population densities and the highest proportion of Black/African-American, foreign-born, and Hispanic/Latina women.

The service area has a total female population of approximately 3.1 million women, which represents roughly 31.2 percent of the female population in New York State. The racial and ethnic background of women in the service area is predominantly White at 89.2 percent (which is higher than the US average of 78.8 percent). Black/African-American women make up approximately 7.5 percent of the female population, with Asian-Pacific Islanders at 2.6 percent, and a small, but important, community of American Indian/Alaskan Natives at 0.65 percent. Ethnically, approximately 3.7 percent of women are classified as Latina. Special populations exist within the service area. These populations include refugees from over 70 countries, the Seneca Nation of Indians, and Amish settlements.

11 | Page Susan G. Komen® Upstate New York November 2017 In the Komen Upstate NY service area, the median household income ranges from $41,547 in Potter County, PA to $69,826 in Saratoga County, NY (US Census Bureau, 2013). Approximately 13.9 percent of people in the region live below the poverty level and 11.5 percent of the adult population has less than a high school education.

Purpose of the Community Profile Report The purpose of the Community Profile Report is to disseminate the knowledge and wisdom gained by Komen Upstate NY about the service area so that the Affiliate can best coordinate community resources and direct funding. An effective Community Profile will help Komen align its community outreach, grant making, and public policy activities towards the same Mission goal: to save lives and end breast cancer forever by empowering others, ensuring quality care for all and energizing science to find the cures.

The Community Profile will allow Affiliates to:  Include a broad range of people and stakeholders in the Affiliate’s work and become more diverse  Fund, educate and build awareness in the areas of greatest need  Make data-driven decisions about how to use its resources in the best way – to make the greatest impact  Strengthen relationships with sponsors by clearly communicating the breast health and breast cancer needs of the community  Provide information to public policymakers to assist focusing their work  Strategize direction to marketing and outreach programs toward areas of greatest need  Create synergy between Mission-related strategic plans and operational activities

Examination of target communities revealed opportunities to grow and influence effective breast health strategies. The results of the Community Profile will aid in driving the Affiliate’s funding and programmatic initiatives. The Profile identifies areas of need and improvements in breast healthcare. The Affiliate aims to fund programs that address existing barriers due to lack of education and support, financial and transportation constraints, and availability of resources. The Affiliate will fund the most effective and impactful programs to reduce late stage diagnosis and promote screening and treatment. Supporting efforts that increase community outreach, establish, and strengthen community partnerships are imperative priorities that can have a direct impact on breast health and save lives.

The Community Profile report will be available to the community via several outlets. The Komen Upstate New York Affiliate website is a valuable resource that provides the community with a link to the Profile as well as with information found in the report. The Affiliate will also utilize social media platforms as a means to get the word out about the local Affiliate’s work in the community and build a following. These platforms can also be used to connect interested members of the community with the results of the Profile. The results of the Profile will also be shared with existing networks in the community with which the Affiliate has an existing relationship.

12 | Page Susan G. Komen® Upstate New York November 2017 Quantitative Data: Measuring Breast Cancer Impact in Local Communities

The quantitative data reports for each Komen Upstate New York region links evidence from sources including: North American Association of Central Cancer Registries (NAACCR), National Center for Health Services (NCHS), Centers for Disease Control and Prevention (CDC), to identify the highest priority areas for evidence-based breast cancer programs. The QDR is one of the key information sources that support the Community Profile with descriptive tables, maps, and identification of priority areas. Data are provided at the county-, regional- and state-levels, as well as for the United States for female breast cancer incidence (i.e., new cases) rates, death rates, late-stage diagnosis rates, mammography proportions as well as demographics (e.g., age, race/ethnicity) and socioeconomic indicators such as income and education level.

Central Region The Central Region encompasses more than 1.2 million women spread over approximately 34 percent of the land area of New York State (US Census Bureau). A small number of populous urban counties are surrounded by many sparsely populated rural counties. Monroe and Onondaga Counties, centered around the cities of Rochester and Syracuse, respectively, include nearly 52 percent of the female population of the Affiliate service area. The racial composition of women in the service area is 88.3 percent White, 8.8 percent Black/African- American, 2.3 percent Asian-Pacific Islanders and 0.6 percent American Indian/Alaskan Native. Ethnically, approximately four percent of women are classified as Hispanic/Latina. Out of the entire Affiliate service area, a large proportion of Black/African-American women reside in Monroe and Onondaga Counties.

The highest age-adjusted death rate from breast cancer in the service area is seen in Monroe County. In addition, the breast cancer incidence rate is significantly higher in Monroe County than the service area as a whole. For these reasons, Monroe County was assigned the “highest priority” based on predicted time to achieve Healthy People 2020 (HP2020) targets for both age- adjusted death rate and late-stage diagnosis rate. Monroe and Onondaga Counties also have a high percentage of Black/African-American women, who have higher age-adjusted death rates and late-stage diagnosis rates than the corresponding rates in the USA, New York State and Central Region. Additionally, Black/African-American women are historically disadvantaged regarding health care in general and breast cancer care (Hunt et al, 2013; Shavers & Brown, 2002) and have been the focus of Central Region’s efforts over the years. Komen Upstate New York is committed to continuing to serve this population. One rural county, Seneca County, stood out in the quantitative data due to a high age-adjusted death rate and strong trend for accelerating death and late-stage diagnosis rates. Seneca County was also identified as a highest priority area based on HP2020 targets. The remainder of the Central Region is predominantly rural and suffers from poverty, poor access to health care and transportation barriers. The Affiliate has and will continue to meet the needs of women in these areas; however, the Community Profile Report will emphasize the Central Region target communities with the highest population densities and proportions of historically underserved women, as well as the rural county with the most alarming breast health trends.

Central Region target communities selected for this report include Monroe County, Black/African-American women in Monroe and Onondaga Counties and Seneca County.

13 | Page Susan G. Komen® Upstate New York November 2017 Monroe County was selected because of its high breast cancer death and incidence rate and because of its worsening trends with respect to HP2020 targets. In addition, Monroe County is home to a high proportion of Black/African-American women, who have high death and late- stage diagnosis rates, and who are historically underserved by the health care system. Onondaga County, too, has a high proportion of Black/African-American women. This population has historically been the focus of many of the Affiliate’s efforts to improve awareness of, and access to, breast cancer prevention and treatment services. Finally, Seneca County, owing to its high death rate and identification as a priority area for HP2020 targets, was also selected as a target community.

Northeastern Region Albany County is predicted to take 13 years or longer to achieve the Healthy People 2020 late- stage incidence target. Albany County is predicted to take one year to achieve the death rate target for HP2020. Because of the projected time to achieve these targets, Albany County has been identified as a medium high priority county. Schenectady County is predicted to take 13 years or longer to achieve the Healthy People 2020 late-stage incidence target. Schenectady County is predicted to take four years to achieve the death rate target for HP2020. Because of the projected time to achieve these targets, Schenectady County has been identified as a medium high priority county. In Albany and Schenectady Counties there is a large Black/African-American population.

Franklin County is predicted to take 13 years or longer to achieve the Healthy People 2020 late- stage incidence target. Franklin County is predicted to take two years to achieve the death rate target for HP2020. Because of the projected time to achieve these targets, Franklin County has been identified as a medium high priority county. Key population characteristics for Franklin County include a large number of American Indian/Alaskan Natives, low education, medically underserved and rural populations.

Fulton County is predicted to take 13 years or longer to achieve the Healthy People 2020 late- stage incidence target. Fulton County is predicted to take two years to achieve the death rate target for HP2020. Because of the projected time to achieve these targets, Fulton County has been identified as a medium high priority county. Additionally, Fulton County has relatively high rural population, high unemployment as well as those with low education levels.

Montgomery County is predicted to take 13 years or longer to achieve the Healthy People 2020 late-stage incidence target. Montgomery County is predicted to take one year to achieve the death rate target for HP2020. Because of the projected time to achieve these targets, Montgomery County has been identified as a medium high priority county. In Montgomery County, there are a large proportion of Hispanic/Latina, low education, medically underserved and rural populations.

Saratoga County is predicted to take 13 years or longer to achieve the Healthy People 2020 late-stage incidence target. Saratoga County is predicted to take eight years to achieve the death rate target for HP2020. Because of the projected time to achieve these targets, Saratoga County has been identified as a high priority county.

Twin Tiers Region

14 | Page Susan G. Komen® Upstate New York November 2017 Overall, the female breast cancer incidence rate in the 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 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 Twin Tiers Region was slightly lower than that observed in the US as a whole and the death rate trend was not available for comparison with the US as a whole. The death rate of the 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 Twin Tiers Region was slightly lower than that observed in the US 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 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 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 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 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, the Affiliate chose Bradford County, PA, and Tioga County, NY, as the counties of focus in the Twin Tiers Region.

Western Region Allegany County falls into the medium-high priority area for HP 2020 targets. Allegany County is predicated to take 2 years to achieve its target death rate, and 13 years or longer to achieve its target late-stage incidence. Allegany County, located in the Southern Tier of the Western Region, is defined as a rural and medically underserved county. Allegany’s population and geographic demographics are comparable to neighboring Cattaraugus County, with 39 percent of county residents living below 250 percent of the poverty line, and 49.5 percent of the total female population over the age of 40. Due to the similarities and geographic proximity between the two counties, they often collaborate in delivering services.

Cattaraugus County falls into the medium priority guidelines for HP 2020 targets. Cattaraugus County is predicated to take three years to achieve its target death rate, and 11 years or longer to achieve its target late-stage incidence. Cattaraugus County is classified as a rural and medically underserved area in the Southern Tier of the Western Region. The annual average female population is 40,877 and 52.3 percent of those women are over the age of 40. Approximately 94 percent of the total female population is comprised of White women and 38.9 percent of the county residents fall below 250 percent of the poverty line. There are also large proportions of American Indian and Amish communities in the county.

15 | Page Susan G. Komen® Upstate New York November 2017 Erie County has been identified as a priority county due to the length of intervention time estimated to achieve the HP2020 targets. It is predicated to take 11 years for the county to achieve its target death rate, and 13 years or longer to achieve its target late-stage incidence. Erie County includes the City of Buffalo, and is the largest and most diverse county in the service area. In general, the minority population in Erie County is higher than the rest of the Western Region, with 14.8 percent Black/African-American residents and 4.6 percent Hispanic/Latina residents. Black/African-American women face higher death rates from breast cancer compared to other races. Black/African-American and Hispanic/Latina women are significantly less likely to be diagnosed at an earlier stage than White women.

Wyoming County is unlikely to achieve HP2020 objectives for breast cancer and is the highest priority county. Several factors contribute to this estimation, with economic and access barriers presenting the greatest obstacles. Wyoming County is predicated to take 13 years or longer to achieve its target death rate, and 13 years or longer to achieve its target late-stage incidence. Wyoming County, also located in the Southern Tier of the Western Region, is the least populated county in the region, with a total population of just under 42,000 people, and just over 19,000 females. Wyoming County’s female population is primarily White and over the age of 40. Over 31 percent of county residents fall below 250 percent of the poverty line.

Overall, the breast cancer late-stage incidence rate in the Western Region was slightly higher than that observed in the US as a whole and the late-stage incidence trend was higher than the US as a whole. The late-stage incidence rate and trend of the Western Region were not significantly different than that observed for the State of New York. For the Western Region as a whole, the incidence rate was lower among Blacks/African-Americans than Whites, lower among Asian Pacific Islanders than Whites, and lower among American Indian/Alaska Natives than Whites. The incidence rate among Hispanics/Latinas was lower than among Non- Hispanics/Latinas. None of the counties in the Affiliate service area had substantially different incidence rates than the Western Region as a whole.

Overall, the breast cancer death rate in the Western Region was slightly higher than that observed in the US as a whole and the death rate trend was not available for comparison with the US as a whole. The death rate of the Western Region was significantly higher than that observed for the State of New York. The breast cancer death rate reflects the access to care and the quality of care in the health care delivery area, as well as cancer stage at diagnosis. The meanings of these data are the same as for incidence rates, with one exception; changes in screening don’t affect death rates in the way that they affect incidence rates.

Health Systems and Public Policy Analysis

Continuum of care The breast cancer continuum of care represents an ongoing process that may be initiated with screening, which is preferable, or with diagnosis. Women with a positive screen result should receive prompt, high-quality diagnosis and, if necessary, treatment services. A negative screening result or a diagnosis that does not include breast cancer should be directed to follow- up care that includes later screening at age- and risk-appropriate intervals.

16 | Page Susan G. Komen® Upstate New York November 2017 Strengths and weaknesses of the continuum of care in target communities Central Region The two most populous target communities in the Central Region, Monroe and Onondaga Counties, feature academic medical centers with high-quality cancer care. Despite these apparent strengths, elevated late-stage diagnosis and death rates among Black/African- American women persist, suggesting that this population may not be receiving the best diagnostic and treatment care.

Other strengths in these two counties include a strong Cancer Services Program in Monroe County that provides frequent screening and education events designed to introduce underserved women into the continuum of care, while Onondaga County boasts a new Cancer Care Center at Upstate Medical University. Both counties have state-of-the-art mammography facilities in proximity to some communities with poverty.

Despite these advantages, not all neighborhoods with large concentrations of underserved women enjoy ready access to high quality preventive care, and some care that is accessible uses outdated technology. In addition, changes in large health systems within these communities threaten to disrupt the networks of care that are available for the underserved. In addition, there are pockets of refugees, particularly in Onondaga County, whose health needs are poorly understood. In both counties, deficits in health literacy and cultural issues constitute additional barriers to high-quality breast cancer care and greater coordination is needed to introduce underserved women into and through the continuum of care.

Seneca County, the third target community, has a small population (35,000) and limited health services. The county is largely rural and lies between the two largest Finger Lakes in the Central Region. The county has no hospital and just one facility for screening mammography, located in the north. A federally qualified health center opened in the southern part of the county serving the poor rural population in this area. Strengths include access to excellent health facilities for those with the means to travel to them and strong collaboration among health care providers and the Cancer Services Program (CSP). Lack of health services within the county and the necessity for women to travel long distances to receive care are the main weaknesses in this area.

Northeastern Region The five counties of interest in the Northeastern Region include 11 hospitals, four community health centers, one free health clinic, and several other facilities providing direct services such as imaging centers and breast health clinics. These include four American College of Surgeons Commission on Cancer accredited facilities, five American College of Radiology Centers of Excellence and no American College of Surgeons National Accreditation Program for Breast Centers (NAPBC) facilities or National Cancer Institute Designated Cancer Centers.

In Albany and Schenectady Counties, there were 43 locations that provided breast cancer services varying between screening, diagnostic, treatment, and survivorship. There were 21 locations providing screening services, 13 locations providing diagnostic services and nine locations providing treatment services. In the entire county, there were 27 locations that provided survivorship services or care.

17 | Page Susan G. Komen® Upstate New York November 2017 In Franklin County, there were nine locations that provided breast cancer services varying between screening, diagnostic, treatment, and survivorship. There were eight locations providing screening services, three locations providing diagnostic services and two locations providing treatment services. In the entire county, there were four locations that provided survivorship services or care.

In Fulton County, there were a total of four locations that provided breast cancer services varying between screening, diagnostic, treatment and survivorship. There were three available locations providing screening. There were two locations that provided diagnostic services, no locations that provided treatment services and two locations that provided support/survivorship.

In Montgomery County, there were five locations that provided breast cancer services varying between screening, diagnostic, treatment, and survivorship. There were four locations providing screening services, one location providing diagnostic services and two locations providing treatment services. In the entire county, there were two locations that provided survivorship services or care.

In Saratoga County, there were 17 locations that provided breast cancer services varying between screening, diagnostic, treatment, and survivorship. There were 13 locations providing screening services, eight locations providing diagnostic services and two locations providing treatment services. In the entire county, there were six locations that provided survivorship services or care.

Twin Tiers Region 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, an Affiliate 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 an Affiliate 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.

18 | Page Susan G. Komen® Upstate New York November 2017 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.

Western Region In Cattaraugus County, community-based organizations are crucial in providing breast health education and resources to women. Many breast health services offered in the county are provided by the two largest healthcare systems in the Southern Tier region of the Western Region, Southern Tier Community Health Center Network and Olean General Hospital. Most outreach programs in this target area are provided by Cancer Services Program (CSP), funded by the New York State Department of Health. CSP offers education, screening, diagnostics, case management, and treatment assistance for breast, cervical, and colorectal cancers at various locations in the Western Region. Additionally, CSP sponsors low cost or no cost breast and cervical cancer risk reduction services to uninsured or underinsured women, ages 40 and over. Other agencies that provide education and support programs include the Cattaraugus County Health Department and the Breast and Cervical Health Partnership of Cattaraugus County.

Few screening and treatment options exist in Cattaraugus County. Only Olean General Hospital offers chemotherapy treatment services (located in the region’s largest city, Olean) and is over an hour drive for many residents. Due to this limitation, many women are referred to hospitals or larger organizations outside of their county to receive breast health services. The distance to screening facilities and treatment services makes accessing breast healthcare difficult for many women. American Indian women are eligible to receive services from two healthcare institutions that primarily serve the Native American community. However, distance between the reservations require women to travel great distances outside of their communities to access these services. Patient navigation, support groups, and survivorship services are severely lacking in Cattaraugus County. The Affiliate could only identify one location that offered a breast cancer support group, again located in the city of Olean.

Allegany County shares many resources and services with neighboring Cattaraugus County, including the same two large healthcare systems which offer screening mammograms to residents. Community-based organizations play a large role in providing education and support services, several of which aim to reduce financial and transportation barriers. The two counties also share CSP, which provides most of the outreach in this area.

Breast health screening and treatment services are even more limited for women living in Allegany County. The lack of available resources requires women to travel over 60 miles round trip to neighboring counties in order to access services. Although Allegany County offers some services for Native American women, much like Cattaraugus County, resources are limited and require additional travel. Breast cancer support groups and patient navigation programs, at the screening and treatment levels, are limited in Allegany. The Affiliate was unable to identify any breast cancer support groups available in Allegany County, instead residents were required to travel to neighboring Cattaraugus County to access the one support group available to both counties.

Of all the target areas in the Western Region, the largest numbers of screening and treatment options are available to women accessing the continuum of care in Erie County. There are

19 | Page Susan G. Komen® Upstate New York November 2017 many community based and health based organizations in Erie County that provide a variety of breast health education and support, including cancer care and patient navigation services to residents, particularly to those in underserved communities. Until recently, few mammography facilities exist inside the City of Buffalo. In early 2015, however, there were at least 2 new Mammography facilities opened in the city.

Patient navigation services are a valuable resource for women transitioning through the continuum of care. Though some healthcare institutions offer patient navigation at the screening level, the availability of these services are limited. Safety-net practices and health centers see an abundance of patients with multiple complex conditions and often find prioritizing health needs challenging. Limited access to technology makes navigating the complex health system difficult for many women.

Wyoming County has one location that offers screening mammograms to residents; Wyoming County Community Hospital. Oak Orchard Community Health Center provides Clinical Breast Exams. Financial resources for uninsured and underinsured women are available through the Cancer Services Program of Livingston and Wyoming Counties.

Overall, Wyoming County severely lacks breast cancer screening, treatment, and support services, including patient navigation programs. Wyoming County currently has no treatment centers. Due to Wyoming County’s rural geography, residents must travel substantial distances to adjacent counties in order to access breast care. Resources for uninsured and underinsured women are available through community-based organizations, such as CSP.

Public Policy Environment and Implications The public policy environment affects the relationship between Komen Upstate New York and state and local agencies that provide access to breast health services for uninsured and underinsured women in the Affiliate service area. Another consideration includes the recently implemented Affordable Care Act (ACA) and how that may alter the landscape for breast health care.

Women without private health insurance can receive breast health services through a complex network of federal, state and local agencies. Screening services are available through the National Breast and Cervical Cancer Early Diagnosis Program (NBCCEDP), also known as the Cancer Services Program in New York and the Healthy Women Program in Pennsylvania. Coverage for breast cancer diagnosis and treatment is available for Medicaid enrollees through the Medicaid Cancer Treatment Program (MCTP). Not surprisingly, given the complexity of the program’s enrollment process, many women in need of breast cancer services fall through the cracks in the system and do not receive the high-quality care that they need. Komen Upstate New York collaborates with the NBCCEDP programs and with health care providers directly to provide a safety net for women who are unable to access breast health preventive, diagnosis and treatment services.

Under the ACA, New York State has participated in the expansion of Medicaid coverage, which will allow more women to receive health insurance coverage through marketplace exchange programs. Pennsylvania did not expand Medicaid coverage. Although the safety net for breast cancer prevention and treatment may expand under the ACA in New York, Komen Upstate New 20 | Page Susan G. Komen® Upstate New York November 2017 York anticipates that the need to provide services for women who “fall through the cracks” in the system will persist in both states. This need is expected to be most pressing in minority communities that include historically underserved women. Furthermore, some providers of breast health services may decline to take Medicaid enrollees due to low reimbursement, resulting in reduced access to needed care for these women. In addition, the fragmented nature of the health care system will continue to create barriers for uninsured or underinsured women in need of breast cancer prevention and treatment services. These will continue to be focus areas for Komen Upstate New York to enable all women who are in need of breast health services to obtain them.

Qualitative Data: Ensuring Community Input

The Affiliate recognizes and understands the importance of involving the community it serves in addressing issues related to breast cancer prevention, diagnosis and treatment. Accordingly, the Affiliate enlisted the help of multiple community leaders in the target communities

Central Region Key assessment questions were similar for Monroe and Onondaga Counties, but assessment questions were unique for the rural agricultural population of Seneca County. Due to elevated late-stage diagnosis and death among Black/African-American women in Monroe and Onondaga Counties, the Affiliate questioned where in the continuum of care the system was failing. What were barriers relating to knowledge, culture, health literacy, trust, geography and belief systems that blocked access to high-quality care. In rural Seneca County, which had the highest breast cancer death rate in the Central Region, the Affiliate wanted to know where, when and how women were accessing and receiving breast health services through the continuum of care.

Key informant interviews revealed three salient themes about impediments to the continuum of care that were common to both urban women of color (Monroe and Onondaga Counties) and rural mainly White women (Seneca County). These commonalities included pervasive poverty, lack of all preventive medical practices in general, and an urgent need for medical homes for all.

In urban Monroe County, key informants highlighted barriers to high-quality breast cancer care among women of color who are faced with poverty and poor access to health care in general. These barriers include care facilities that are not conveniently located, lack of diversity among care providers, prohibitive cost of deductibles for follow-up diagnoses, low health-related knowledge and literacy levels, fatalistic health beliefs, and lack of a coordinated system to assist women through the continuum of care. Residents of Onondaga County face similar life circumstances and barriers to high-quality cancer care. Prevention is a low priority among women who struggle to make ends meet in their everyday lives. Here too, health-related knowledge and literacy are limited, women frequently seek advice from unscientific resources, and many women do not have strong relationships with primary care medical providers. Although the health insurance picture may be changing as a result of the ACA, many women in both Monroe and Onondaga Counties historically have lacked health insurance, and there is much uncertainty about how changes brought on by the ACA will affect access to breast cancer care in these communities.

21 | Page Susan G. Komen® Upstate New York November 2017 Barriers identified by key informants in Seneca County are also related to poverty and lack of primary care. In this rural county, many women face social isolation and transportation difficulties, often putting off health care needs until they are in crisis. Many women do not prioritize their own health and do not regularly visit primary providers. Despite availability of free or low-cost prevention services through CSPs, many women refuse to take advantage of these because they consider them to be "hand-outs”.

Key informants in all three target communities described dedicated providers who work tirelessly and creatively to bring underserved women into the continuum of care. This was evidenced, for example, by Rochester screening days that offer free services such as massages, and Seneca County providers who coordinate their efforts to find medical homes for at-risk women.

Interviews during this Community Profile cycle focused heavily on understanding barriers to mammography screening because, as the first line of defense, early detection is the best tool to combat breast cancer death and morbidity. Future investigations in the Central Region could be enhanced by learning directly from at-risk women about their experiences with the continuum of care. The Affiliate also needs timely methods to evaluate the availability, affordability, and utilization of breast health services in various communities that are undergoing rapid consolidations in health care.

Twin Tiers Region To best evaluate the experiences of breast cancer survivors in Bradford County, Pennsylvania, the Affiliate constructed a short (11 question) survey and interviewed key informants at several Bradford County health care providers. The Affiliate 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, the Affiliate values their insights into the conditions facing those affected by breast cancer throughout the continuum of care. Together, these methods enabled the Affiliate 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 the Affiliate 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, the Affiliate 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. The Affiliate 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

22 | Page Susan G. Komen® Upstate New York November 2017 mammography unit that services Tioga County, enabled the Affiliate 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.

Western Region The Affiliate conducted key informant interviews and focus groups with five different demographic groups from each of the four target areas to gain a more in-depth perspective on the barriers women face in accessing breast health care. These groups included primary care providers, cancer care providers, community-based organizations, women 40 years old and older, and breast cancer survivors. A set of predetermined interview questions were used to guide the conversations. Questions were selected to elicit information about three identified content areas; access to cancer care across the continuum of care, barriers to screening and early detection, and availability of support services.

The Affiliate conducted key informant interviews with primary care providers, cancer care providers, and community based organizations. All of these groups were identified as important in assisting women through the continuum of care, specifically recognizing the importance of primary care providers as the gateway to screening mammography. All key informants were asked about the availability of resources in their counties, and barriers women face in seeking screening and/or treatment. Both primary care providers and cancer care providers were asked to consider factors that may contribute to late stage diagnosis, their opinions on current screening guidelines, and barriers they faced in follow up care with patients in treatment.

Women 40 years of age and older, and breast cancer survivors participated in key informant interviews and focus groups. It was important to explore the views of women without breast cancer to understand the barriers they may face in accessing care, particularly in regards to early detection and screening. In addition, the Affiliate wanted to assess the experiences of survivors, specifically the challenges they faced throughout the entire cancer care continuum. Survivors were recruited to share feedback of their experience in navigating the continuum of care for their treatment resources. Survivors were asked to comment on barriers they faced in getting screened and receiving treatment, the availability of resources and barriers to accessing those resources, and how they thought the continuum of care could be improved.

Overall, similar and recurring barriers existed in each target area among key informants and focus group participants. Financial and transportation barriers were common issues that women faced in accessing quality breast health services. Key informants identified cost and lack of insurance as main concerns inhibiting women from accessing services. The cost of co-pays and potential out of pocket costs for uninsured and underinsured women deter them from accessing services. Focus groups noted gas prices and frequency of travel for treatments as a concern,

23 | Page Susan G. Komen® Upstate New York November 2017 particularly for rural communities where inconvenient locations require women to travel great distances for breast health services, and public transportation was not always a reliable alternative. Focus group participants also mentioned a concern for the cost of services and co- pays.

In all target areas, key informants noted fear as a prevalent deterrent for many women from seeking services, and overcoming the fears associated with a potential diagnosis as essential to encouraging women to enter the continuum of care. Women in the focus groups acknowledged they were fearful of the mammogram procedure itself, having endured painful experiences in the past, and many were afraid of the potential for positive findings.

A lack of appropriate breast health knowledge inhibited many women in the target areas from recognizing the importance of breast screening and early detection. Key informants and focus groups revealed women received breast health knowledge from several sources, including primary care physicians, community based organizations, and media outlets. However, there is still a considerable lack of awareness among residents. Increasing the availability and access to culturally appropriate breast health education can aid in reducing fears and improving screening rates.

Communication deficits and a lack of primary care physicians were largely mentioned among key informants in Allegany and Cattaraugus counties. Many women in the focus groups indicated that having a good rapport with their doctor is an imperative element to their care. Participants across all counties mentioned that if they did not feel comfortable or felt that the physician was not empathetic to their situation, changing doctors was their prerogative. An improvement in communication and coordination of care among the health system is necessary.

Key informants and focus group participants acknowledged family history or knowing someone personally affected by cancer was a strong motivator for seeking screening services. Also, if a woman is more health conscious and visits her doctor regularly, she is more likely to seek screening. Key informants specifically mentioned a lack of time and scheduling challenges as factors preventing women from seeking mammography screening.

Overall, there is a need for increased breast health education, reducing barriers to access to care, and inadequate availability of services, in hopes of making an impact on breast cancer death.

Mission Action Plan

Note: Some of the objectives below were accomplished by the individual four affiliates prior to the formation of Komen Upstate New York.

24 | Page Susan G. Komen® Upstate New York November 2017 areas where services are close to where they live, Black/African-American women in Onondaga and Monroe Counties face other barriers include fatalism, low health expectations, and competing health, psychosocial and economic problems.

Priority Partner with community-based outreach/health organizations to effectively promote breast health education and services including breaking down cultural barriers for Black/African- American women in Onondaga and Monroe Counties.

Objectives In FY 18-19, reach out to two predominantly Black/African-American faith-based organizations in Onondaga and Monroe Counties to hold breast health community outreach presentations.

In FY 18-19, a key funding priority will be to encourage grant applications that address action-oriented, evidence-based and culturally appropriate approaches to moving women through the continuum of care in Onondaga and Monroe Counties.

Monroe County, NY Problem According to the Central Region Quantitative Data Report, urban Black/African-American women in the target community of Monroe County have high breast cancer death rates compared to the Central Region and the state as a whole, and lack of breast health services in proximity to where they live. In addition, the qualitative data analysis indicated that they lack access to medical homes and have few opportunities to participate in screening activities.

Priority Facilitate access to consistent, high quality primary health care and increase opportunities to participate in breast cancer screening for urban, Black/African-American women in Monroe County. Reduce economic barriers to urban Black/African-American women’s ability to access quality breast health services in Monroe County.

Objective In FY 18-19 a key funding priority will be to develop and/or improve navigation services to facilitate movement through the continuum of care - from primary care and screening through post-treatment support - for women of color provided by urban Black/African-American women in Rochester/Monroe County.

Seneca County, NY Problem According to the Central Region Quantitative Data Report, Seneca County has a high age- adjusted breast cancer death rate as well as a significant positive increase in the death rate of 21.4 percent annually. The health systems and public policy analysis indicated that there are limited health facilities due to the sparse rural population and geographic barriers that prohibit convenient and timely care. In addition, the qualitative data analysis suggested that social isolation in this rural environment is common, and that there may be a reluctance to accept free or reduced cost services due to the perception that these are “handouts”.

25 | Page Susan G. Komen® Upstate New York November 2017 Priority Increase the availability and accuracy of information for women in Seneca County regarding the importance of early screening, treatment of breast cancer and the services accessible to them.

Objective In FY 18-19, hold one training session in Seneca County to teach providers how to apply for grants that would address the amount and quality of breast cancer education and navigation services.

NORTHEASTERN REGION Albany and Schenectady Counties, NY Problem Albany and Schenectady Counties are categorized as medium high priority with predicted time to achieve the HP2020 breast cancer targets and key populations characteristics. Albany County is predicted to take one year to achieve death rate and 13 years or longer to achieve late-stage incidence targets for Healthy People2020. Schenectady County is predicted to take four years to achieve death rate and 13 years or longer to achieve late-stage incidence targets for Healthy People2020. These counties have larger Black/African-American population and a growing immigrant and refugee population that may have unique access barriers to breast cancer services.

Priority Increase access to breast cancer services for Black/African-American and foreign-born women residing in Albany and Schenectady Counties.

Objectives From FY2017 through FY2019, the Community Grant Request for Application (RFA) will specify that evidence-based programs providing assistance for Black/African-American and foreign born women in Albany and Schenectady Counties to access available breast cancer services are a funding priority.

From FY2017 through FY2019, Komen Upstate New York will work to facilitate partnerships between organizations who serve the target populations and organizations who have expertise in breast cancer. The partner organization will understand the unique barriers faced by the target population (Black/ African- American and foreign-born). The goal of the partnership is to create outreach programs which effectively link the target population to the necessary breast health education and services.

Franklin County, NY Problem Franklin County is categorized as medium high priority with predicted time to achieve the HP2020 breast cancer targets and key populations characteristics. The county is predicted to take two years to achieve death rate targets and 13 years or longer to achieve late-stage incidence targets for Healthy People2020. This county also has a large rural, low-education, medically underserved and American Indian population that may have unique access barriers to breast cancer services.

26 | Page Susan G. Komen® Upstate New York November 2017

Priority Increase access to breast cancer services for rural, low-education, medically underserved and/or American Indian women residing in Franklin County.

Objectives From FY2017 through FY2019, the Community Grant Request for Application (RFA) will specify that evidence-based programs providing assistance for rural women in Franklin County to access available breast cancer services are a funding priority.

From FY2017 through FY2019, the Affiliate will make it a priority to identify and build relationships with community or tribal organizations in Franklin County who serve the American Indian population in Franklin County. By FY2020, the Affiliate will have identified at least one community granting partner in Franklin County.

Fulton County, NY Problem Fulton County is categorized as medium high priority with predicted time to achieve the HP2020 breast cancer targets and key populations characteristics. The county is predicted to take two years to achieve death rate targets and 13 years or longer to achieve late-stage incidence targets for Healthy People2020. This county also has a large rural and low-education population that may have unique access barriers to breast cancer services.

Priority Increase access to breast cancer services for rural, low-income and/or low-education women residing in Fulton County.

Objective From FY2017 through FY2019, the Community Grant Request for Application (RFA) will specify that evidence-based programs providing assistance for rural women in Fulton County to access available breast cancer services are a funding priority.

Montgomery County, NY Problem Montgomery County is categorized as medium high priority with predicted time to achieve the HP2020 breast cancer targets and key populations characteristics. The county is predicted to take one year to achieve death rate targets and 13 years or longer to achieve late-stage incidence targets for Healthy People2020. This county also has a large Hispanic/Latina, rural, low-education, medically underserved and high poverty populations that may have unique access barriers to breast cancer services.

Priority Increase access to breast cancer services for Hispanic/Latina, rural, low-education, medically underserved and high poverty women residing in Montgomery County.

27 | Page Susan G. Komen® Upstate New York November 2017 Objectives From FY2017 through FY2019, the Community Grant Request for Application (RFA) will specify that evidence-based programs providing assistance for rural women and Hispanic/Latina women in Montgomery County to access available breast cancer services are a funding priority.

From FY2017 through FY2019, the Affiliate will work with community partners and grantees to increase access to patient navigation through lay or professional bi-lingual breast health navigators.

Saratoga County, NY Problem Saratoga County is categorized as high priority with predicted time to achieve the HP2020 breast cancer targets and key populations characteristics. The county is predicted to take eight years to achieve death rate and 13 years or longer to achieve late-stage incidence targets for Healthy People2020. Saratoga County is a wealthy area, with high levels of health insurance, however many working class individuals have high deductibles and cost-sharing through marketplace health plans. This creates a barrier to care for insured women. There are also several rural areas of Saratoga County which lack access to public transportation and where there is limited access to medical care.

Priority Increase access to breast cancer services for women in Saratoga County.

Objectives From FY2017 through FY2019, the Community Grant Request for Application (RFA) will specify that evidence-based programs providing assistance for women in Saratoga County to access available breast cancer services are a funding priority.

By FY2019, Komen Upstate New York will assess and determine the feasibility of creating a dedicated fund to assist underinsured women with co-pays and deductibles in order to eliminate high cost sharing as a barrier to care.

TWIN TIERS REGION Bradford County, PA Problem Although Bradford County, PA is home to one of the largest health care providers in the 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 incidence 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 Upstate New York has identified the following mission priority.

28 | Page Susan G. Komen® Upstate New York November 2017 Priority Increase programming and support available to all breast cancer patients and survivors in Bradford County PA throughout the continuum of care.

Objectives 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

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.

Priority Increase Komen’s presence and support in Bradford County, especially the very rural, southern regions.

Objectives In 2014, identify and invite a Bradford County resident to join the board or directors.

In 2015, attend at least one public event in southern Bradford County including education materials with Affiliate staff and board member participation.

In 2018, plan at least one public event highlighting Komen Upstate New York’s mission and presence in Bradford County.

Tioga County, NY Problem 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.

Priority Increase breast cancer education, programming and services available to women over 40 residing in predominantly-rural Tioga County, NY.

Objectives In 2015, meet with the breast support organizations operating in or providing services to residents of Tioga County, NY to determine how best the Affiliate can support their efforts.

By 2017, develop a funding priority for organizations providing breast-health education, programming and services in Tioga County.

29 | Page Susan G. Komen® Upstate New York November 2017 Priority 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.

Objectives In 2015, identify and meet with at least one community organization to determine how best to address transportation needs from northern Tioga County.

By 2017, encourage and help one or more community organizations to apply for an Affiliate grant to address transportation needs from northern Tioga County.

Priority Increase Komen Upstate New York’s presence in Tioga County, NY.

Objectives In 2015, attend at least one public event in Tioga County, NY including education materials with the Affiliate staff and board member participation.

In 2018, plan at least one public event highlighting Komen Upstate New York’s mission and presence in Tioga County, NY.

WESTERN REGION Allegany County, NY Problem Analysis of the qualitative data shows that distance to breast cancer screening and treatment services is a major barrier, impeding access to care for women in Allegany County. Two priorities were identified with objectives developed to aid in tackling the transportation barrier and lack of navigation services in Allegany County.

Priority Increase the number of women screened annually by improving access to breast health services among women in Allegany County, by 2019.

Objective In FY 2016-2017 encourage community-based and/or health organizations in Allegany County to submit grant proposals to increase programs that aim to reduce transportation and financial barriers and improve access to breast health services.

Priority By 2019, promote peer support and patient navigation in Allegany County to increase the awareness of the importance of breast health and screening.

30 | Page Susan G. Komen® Upstate New York November 2017 Objective By 2019, partner with Allegany County health organizations and local media and marketing personnel to educate the community about Komen Upstate New York’s presence and activities.

Cattaraugus County, NY Problem Key informant interviews and focus groups conducted in Cattaraugus County revealed that women in Cattaraugus County have limited access to affordable and convenient breast health services, particularly screening and treatment options.

Priority By 2019, increase the number of women screened annually by improving access to breast health services in Cattaraugus County.

Objective By 2019, increase marketing efforts through media outlets to encourage organizations in Cattaraugus County to submit grant proposals that aim to reduce transportation and financial barriers and improve access to breast health services

Priority By 2019, promote peer support and patient navigation in Cattaraugus County to increase the awareness of the importance of breast health and screening.

Objectives Beginning with 2016-17 RFA, make grant applications targeting programs with an emphasis on patient navigation, support groups, and/or survivorship efforts in Cattaraugus County a funding priority.

By 2019, promote Community and Small Grant applications in Cattaraugus County, with an emphasis on improving patient navigation, support groups, and/or survivorship.

By 2019, implement a public relations/marketing campaign around Komen- sponsored education and outreach regarding screenings and resources available for breast cancer patients and survivors.

Erie County, NY Problem Data obtained through the Quantitative Report and Qualitative assessment shows that underserved women in Erie County, especially African-American and Latino populations, are significantly less likely to be diagnosed at an early stage of breast cancer. The most common factors that contribute to this problem are barriers to transportation, access to breast health services, and inadequate availability of services. The Affiliate has identified two main priorities with several objectives established to help alleviate the problems:

31 | Page Susan G. Komen® Upstate New York November 2017 Priority Decrease disparities in breast care services and increase the number of minority women screened annually in Erie County, by 2019.

Objectives By Fiscal Year (FY) 2016-2017, make Request for Applications (RFA) aiming to alleviate transportation barriers to breast health services, particularly to breast screenings, a funding priority.

By 2019, collaborate with other local cancer-focused agencies and the state health department in developing initiatives toward educating underserved populations about breast health.

By 2019, identify, collaborate with, and support at least three community-based organizations experienced in combating the social and cultural barriers that prevent many underserved women from seeking or successfully accessing breast cancer services.

Priority Promote peer support and patient navigation to increase awareness of the importance of breast health and screening in Erie County, by 2019.

Objectives In FY 2016-2017, promote grant proposals aiming to support patient navigation programs providing breast health guidance to women.

By 2019, identify and collaborate with four community-based and/or faith based organizations in the city of Buffalo to disseminate Komen-produced breast health information to the local community.

By 2019, collaborate with two community-based and/or health organizations and local media and marketing personnel in Erie County to educate the community about the Affiliate’s presence and activities.

Wyoming County, NY Problem The health systems analysis and qualitative data assessments shows that Wyoming County severely lacks breast cancer screening, treatment, and support services creating major barriers to access for women in this rural, medically underserved region.

Priority Increase the number of women screened annually by improving access to breast health services among women in Wyoming County by, 2019.

Objectives Beginning with 2016-17 RFA, make grant applications targeting programs with an emphasis on patient navigation, support groups, and/or survivorship efforts in Wyoming County a funding priority. 32 | Page Susan G. Komen® Upstate New York November 2017

By 2019, partner with at least two Wyoming County organizations for collaboration efforts in education of area residents and providers regarding Komen breast health standards and services.

Beginning with 2016-17 RFA, identify and target community-based and/or health organizations to submit grant proposals to increase programs reducing transportation and financial barriers and improving access to breast health services in Wyoming County.

Priority By 2019, promote peer support and patient navigation in Wyoming County to increase the awareness of the importance of breast health and screening.

Objectives By 2019, offer grant writing workshops promoting the Community and Small Grants programs targeting providers and community-based organizations in Wyoming County in order to provide patient navigation, support groups, and/or survivorship efforts.

By 2019, collaborate with one local healthcare institution and local media and marketing personnel in Wyoming County to educate the community about Komen Upstate New York’s presence and activities, and assist in the dissemination of Komen supported breast health education.

Public Policy Problem Data shows that many women in the target areas are not meeting screening guidelines, and are not set up to meet Healthy People 2020 objectives in the next 10 years. Because so many women in the service area are not set up to meet Health People 2020 objectives, this is a service area wide priority.

Priority By 2019, develop new partnerships to advance the Affiliate’s mission.

Objective By 2019, develop a partnership with the New York State Cancer Consortium (NYSCC) and formally join the Cancer Consortium to align with statewide initiatives.

Disclaimer: Comprehensive data for the Executive Summary can be found in the 2015 Susan G. Komen® Upstate New York Community Profile Report.

33 | Page Susan G. Komen® Upstate New York November 2017 Introduction

Affiliate History

Nancy G. Brinker promised her dying sister, Susan G. Komen, she would do everything in her power to end breast cancer forever. In 1982 that promise became Susan G. Komen for the Cure®, launching the global breast cancer movement. Today, Susan G. Komen® is the world’s largest grassroots network of breast cancer survivors and activists.

34 | Page Susan G. Komen® Upstate New York November 2017 Through the efforts of a number of committed community leaders and health care providers, the Susan G. Komen® Western New York was formed in 2000. For the first four years, the Affiliate was an all-volunteer organization. Under the excellent leadership of the founding board president, the Affiliate grew to a size that allowed for the employment of an Executive Director, followed shortly thereafter by an Education Coordinator. This allowed the Affiliate to manage as a year-round agency active throughout the community with a variety of events. The founding board members of Komen Western New York prepared a Community Profile and a comprehensive strategic plan was developed to provide immediate focus and future direction for the Affiliate. In response to the need identified in the profile, the Affiliate utilized its diverse personal and professional contacts to organize and implement the first Race for the Cure® in Buffalo in May 2001.

Komen Upstate New York has funded $14,758,368 in community programs serving Upstate New York’s women and men, while contributing $5,285,182 to Komen research since 1997.

35 | Page Susan G. Komen® Upstate New York November 2017 The Affiliate assumes leadership roles in organizing the Central New York Breast Cancer Network, and in partnering with SUNY Upstate Medical University’s new Cancer Center to develop the “She Matters” program. This unique program uses peer-trained resident health advocates to educate, support, encourage and facilitate mammography screening among women who are over the age of 40 and live in the Syracuse Housing Authority’s Pioneer Homes development.

Affiliate Organizational Structure

Under the leadership of the Board of Directors, Komen Upstate NY is composed of up to 21 Board of Director members, two Co-Executive Directors, and 5 Staff Members. The Affiliate’s powerful network of approximately four hundred volunteers continues to lead the fight against breast cancer and are crucial in helping to carry out the mission of the Affiliate. See Figure 1.1 for the Affiliate organizational structure.

36 | Page Susan G. Komen® Upstate New York November 2017

Figure 1.1. Susan G. Komen Upstate New York organizational structure

Affiliate Service Area

The Komen Upstate NY service area borders Canada to the north, Lake Erie to the west, Pennsylvania to the south, and New Hampshire, Massachusetts and Connecticut to the East. The service area includes the following 49 counties (Figure 1.2). They are:  New York: Albany, Allegany, Broome, Cattaraugus, Cayuga, Chautauqua, Chemung, Chenango, Clinton, Columbia, Cortland, Erie, Essex, Franklin, Fulton, Genesee, Green, Hamilton, Herkimer, Jefferson, Lewis, Livingston, Madison, Monroe, Montgomery, Niagara, Oneida, Onondaga, Ontario, Orleans, Oswego, Rensselaer, Saratoga, Schenectady, Schoharie, Schuyler, Seneca, St. Lawrence, Steuben, Tioga, Tompkins, Warren, Washington, Wayne, Wyoming, Yates  Pennsylvania: Bradford, Potter, Tioga

37 | Page Susan G. Komen® Upstate New York November 2017

Figure 1.2. Susan G. Komen Upstate New York service area

38 | Page Susan G. Komen® Upstate New York November 2017 In the Komen Upstate NY service area, the median household income ranges from $41,547 in Potter County, PA to $69,826 in Saratoga County, NY (US Census Bureau, 2013). Approximately 13.9 percent of people in the region live below the poverty level and 11.5 percent of the adult population has less than a high school education.

Purpose of the Community Profile Report

The purpose of the Community Profile Report is to disseminate the knowledge and wisdom gained by Komen Upstate NY about the service area so that the Affiliate can best coordinate community resources and direct funding. An effective Community Profile will help Komen align its community outreach, grant making, and public policy activities towards the same Mission goal: to save lives and end breast cancer forever by empowering others, ensuring quality care for all and energizing science to find the cures.

39 | Page Susan G. Komen® Upstate New York November 2017 Quantitative Data: Measuring Breast Cancer Impact in the Local Communities

Quantitative Data Report

Introduction The purpose of the quantitative data report for Susan G. Komen® Upstate New York 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 in the report are used to identify priorities within the Affiliate’s service area based on estimates of how long it would take an area to achieve Healthy People 2020 objectives for breast cancer late-stage diagnosis and death rates (http://www.healthypeople.gov/2020/default.aspx).

Breast Cancer Statistics Incidence rates The breast cancer incidence rate shows the frequency of new cases of breast cancer among women living in an area during a certain time period (Table 2.1). Incidence rates may be calculated for all women or for specific groups of women (e.g. for Asian/Pacific Islander women living in the area).

The female breast cancer incidence rate is calculated as the number of females in an area who were diagnosed with breast cancer divided by the total number of females living in that area. Incidence rates are usually expressed in terms of 100,000 people. For example, suppose there are 50,000 females living in an area and 60 of them are diagnosed with breast cancer during a certain time period. Sixty out of 50,000 is the same as 120 out of 100,000. So the female breast cancer incidence rate would be reported as 120 per 100,000 for that time period.

When comparing breast cancer rates for an area where many older people live to rates for an area where younger people live, it’s hard to know whether the differences are due to age or whether other factors might also be involved. To account for age, breast cancer rates are usually adjusted to a common standard age distribution. Using age-adjusted rates makes it possible to spot differences in breast cancer rates caused by factors other than differences in age between groups of women.

To show trends (changes over time) in cancer incidence, data for the annual percent change in the incidence rate over a five-year period were included in the report. The annual percent change is the average year-to-year change of the incidence rate. It may be either a positive or negative number.  A negative value means that the rates are getting lower.  A positive value means that the rates are getting higher.  A positive value (rates getting higher) may seem undesirable—and it generally is. However, it’s important to remember that an increase in breast cancer incidence could also mean that more breast cancers are being found because more women are getting

40 | Page Susan G. Komen® Upstate New York November 2017 mammograms. Higher rates don’t necessarily mean that there has been an increase in the occurrence of breast cancer.

Death rates The breast cancer death rate shows the frequency of death from breast cancer among women living in a given area during a certain time period (Table 2.1). Like incidence rates, death rates may be calculated for all women or for specific groups of women (e.g. Black/African-American women).

The death rate is calculated as the number of women from a particular geographic area who died from breast cancer divided by the total number of women living in that area. Death rates are shown in terms of 100,000 women and adjusted for age.

Data are included for the annual percent change in the death rate over a five-year period.

The meanings of these data are the same as for incidence rates, with one exception. Changes in screening don’t affect death rates in the way that they affect incidence rates. A negative value, which means that death rates are getting lower, is always desirable. A positive value, which means that death rates are getting higher, is always undesirable.

Late-stage incidence rates For this report, late-stage breast cancer is defined as regional or distant stage using the Surveillance, Epidemiology and End Results (SEER) Summary Stage definitions (http://seer.cancer.gov/tools/ssm/). State and national reporting usually uses the SEER Summary Stage. It provides a consistent set of definitions of stages for historical comparisons.

The late-stage breast cancer incidence rate is calculated as the number of women with regional or distant breast cancer in a particular geographic area divided by the number of women living in that area (Table 2.1). Late-stage incidence rates are shown in terms of 100,000 women and adjusted for age.

Table 2.1. Female breast cancer incidence rates and trends, death rates and trends, and late-stage rates and trends Incidence Rates and Trends Death Rates and Trends Late-stage Rates and Trends # of # of Female New Age- Trend # of Age- Trend New Age- Trend Population Cases adjusted (Annual Deaths adjusted (Annual Cases adjusted (Annual (Annual (Annual Rate/ Percent (Annual Rate/ Percent (Annual Rate/ Percent Population Group Average) Average) 100,000 Change) Average) 100,000 Change) Average) 100,000 Change) US 154,540,194 182,234 122.1 -0.2% 40,736 22.6 -1.9% 64,590 43.8 -1.2% HP2020 . - - - - 20.6* - - 41.0* - New York 9,929,239 14,604 127.7 -0.4% 2,704 22.3 -2.6% 5,026 44.6 -1.6% Pennsylvania 6,474,106 10,133 126.0 0.5% 2,103 23.8 -2.3% 3,566 45.4 -0.4% Central Region 1,252,030 1,895 127.9 -3.2% 336 21.1 NA 593 41.1 -2.2% White 1,106,147 1,774 129.1 -3.4% 315 21.0 NA 545 40.8 -2.3% Black/African-American 110,303 92 112.6 -3.4% 19 24.8 NA 38 45.5 -1.2% American Indian/Alaska 7,081 7 105.9 23.0% SN SN SN SN SN SN Native (AIAN) Asian Pacific Islander 28,499 18 90.2 1.1% SN SN SN 7 34.5 0.3% (API)

41 | Page Susan G. Komen® Upstate New York November 2017 Incidence Rates and Trends Death Rates and Trends Late-stage Rates and Trends # of # of Female New Age- Trend # of Age- Trend New Age- Trend Population Cases adjusted (Annual Deaths adjusted (Annual Cases adjusted (Annual (Annual (Annual Rate/ Percent (Annual Rate/ Percent (Annual Rate/ Percent Population Group Average) Average) 100,000 Change) Average) 100,000 Change) Average) 100,000 Change) Non-Hispanic/ Latina 1,201,490 1,866 128.6 -3.1% 332 21.2 NA 583 41.3 -2.2% Hispanic/ Latina 50,540 29 112.2 -10.9% 4 17.0 NA 11 37.8 5.5% Cayuga County - NY 39,475 64 128.2 -4.0% 11 19.4 -3.4% 21 43.2 -1.8% Chenango County - NY 25,679 37 111.7 7.0% 8 21.2 -3.9% 14 45.8 8.9% Cortland County - NY 25,357 29 103.2 -1.6% 5 18.5 -1.3% 10 35.1 9.3% Herkimer County - NY 32,916 51 122.7 -8.4% 10 20.0 -4.5% 17 42.1 -2.6% Jefferson County - NY 55,723 68 120.9 -2.9% 11 19.4 -3.6% 17 29.7 -8.6% Lewis County - NY 13,427 18 112.8 -16.6% SN SN SN 5 32.9 -6.7% Livingston County - NY 32,619 50 134.2 -1.4% 7 18.3 -2.7% 15 40.2 -14.9% Madison County - NY 37,115 52 122.3 -2.3% 6 13.7 -2.6% 17 40.5 -3.2% Monroe County - NY 383,758 629 139.7 -2.6% 110 22.8 2.4% 190 43.4 0.2% Oneida County - NY 117,660 175 117.6 -4.1% 35 20.2 -3.4% 62 42.2 -7.9% Onondaga County - NY 240,643 367 130.8 -4.2% 70 22.7 -2.4% 116 42.7 -2.1% Ontario County - NY 54,335 89 130.3 0.1% 13 17.5 -3.1% 28 42.1 -1.2% Oswego County - NY 61,442 72 105.3 -5.2% 14 20.4 -2.8% 25 37.5 6.3% St. Lawrence County - NY 54,916 70 109.5 -7.0% 12 17.7 -1.8% 19 28.8 -8.6% Seneca County - NY 16,860 31 143.3 -4.6% 6 23.6 21.4% 8 38.4 3.7% Wayne County - NY 47,123 72 125.4 0.2% 13 21.7 -2.4% 24 42.0 -2.8% Yates County - NY 12,982 20 121.5 -0.2% 4 24.4 NA 6 36.4 -20.8% Northeastern Region 701,257 1,089 125.7 -0.5% 194 20.9 NA 368 43.5 0.5% White 637,536 1,045 127.5 -0.4% 185 20.8 NA 351 43.9 0.3% Black/African-American 42,680 31 100.7 -1.1% 7 23.8 NA 12 39.5 0.6% American Indian/Alaska 4,150 SN SN SN SN SN SN SN SN SN Native (AIAN) Asian Pacific Islander 16,891 8 66.3 -2.1% SN SN SN 3 24.7 -11.0% (API) Non-Hispanic/ Latina 677,145 1,078 126.5 -0.5% 193 21.0 NA 364 43.9 0.2% Hispanic/ Latina 24,112 11 81.6 -3.5% SN SN SN 3 23.8 20.7% Albany County - NY 157,324 241 129.3 4.8% 42 21.0 -2.5% 84 46.0 8.3% Clinton County - NY 40,115 53 115.5 3.4% 8 16.2 -3.5% 17 36.2 -1.8% Columbia County - NY 31,403 47 110.8 -4.9% 7 15.6 -3.7% 17 39.1 -3.7% Essex County - NY 18,978 33 121.3 -6.2% 4 12.1 -5.9% 10 39.2 -17.1% Franklin County - NY 23,277 31 106.3 6.6% 6 21.6 -4.3% 9 30.1 9.9% Fulton County - NY 28,042 44 123.2 1.0% 8 21.3 -2.9% 17 50.8 2.3% Greene County - NY 23,618 41 124.6 -15.0% 9 25.0 -2.1% 17 53.0 -18.3% Hamilton County - NY 2,439 5 131.4 NA SN SN SN SN SN SN Montgomery County - NY 25,631 36 108.0 5.9% 8 20.9 -3.8% 12 35.0 11.0% Rensselaer County - NY 80,429 124 130.7 -3.8% 21 20.1 -3.7% 44 48.6 -4.8% Saratoga County - NY 110,336 179 135.4 1.3% 33 24.6 -2.5% 58 44.7 3.9% Schenectady County - NY 79,271 127 129.2 -1.6% 24 22.4 -2.6% 42 43.3 4.8% Schoharie County - NY 16,412 19 90.9 11.9% 4 19.8 -3.6% 7 33.4 11.1% Warren County - NY 33,606 60 133.4 -7.4% 10 20.1 15.7% 16 38.1 -10.4% Washington County - NY 30,375 49 129.0 -10.4% 10 22.8 -1.2% 17 44.5 -11.4% Twin Tiers Region 345,073 525 123.4 -1.6% 101 21.6 NA 169 41.1 -2.7% 42 | Page Susan G. Komen® Upstate New York November 2017 Incidence Rates and Trends Death Rates and Trends Late-stage Rates and Trends # of # of Female New Age- Trend # of Age- Trend New Age- Trend Population Cases adjusted (Annual Deaths adjusted (Annual Cases adjusted (Annual (Annual (Annual Rate/ Percent (Annual Rate/ Percent (Annual Rate/ Percent Population Group Average) Average) 100,000 Change) Average) 100,000 Change) Average) 100,000 Change) White 322,450 512 124.3 -1.8% 99 21.7 NA 165 41.6 -3.6% Black/African-American 11,612 7 100.2 -1.6% SN SN SN SN SN SN American Indian/Alaska 1,107 SN SN SN SN SN SN SN SN SN Native (AIAN) Asian Pacific Islander 9,904 4 72.1 30.0% SN SN SN SN SN SN (API) Non-Hispanic/ Latina 337,421 522 123.7 -1.7% 101 21.7 NA 167 41.0 -2.8% Hispanic/ Latina 7,653 4 95.6 3.8% SN SN SN SN SN SN Broome County - NY 102,594 162 124.9 0.6% 30 20.1 -3.2% 50 40.5 -1.4% Chemung County - NY 44,637 74 130.0 -6.8% 13 21.0 -3.4% 24 43.0 -12.5% Schuyler County - NY 9,311 14 114.1 -6.1% SN SN SN 4 36.5 -9.0% Steuben County - NY 49,838 70 112.3 -2.6% 17 26.0 -0.5% 24 40.1 -6.2% Tioga County - NY 25,913 43 132.6 3.9% 7 20.8 -3.3% 12 37.4 10.8% Tompkins County - NY 50,993 63 130.2 -1.3% 12 22.3 -3.1% 17 36.6 -2.1% Bradford County - PA 31,772 53 125.4 0.0% 10 21.3 -3.0% 20 49.4 1.8% Potter County - PA 8,787 13 103.3 -7.3% 4 27.3 -2.8% 4 34.2 -15.6% Tioga County - PA 21,228 33 117.4 -7.1% 6 21.1 -1.9% 12 45.5 -4.4% Western Region 794,380 1,363 136.2 0.5% 268 24.8 NA 439 45.1 0.3% White 689,854 1,253 137.8 0.2% 237 24.0 NA 388 44.1 -0.1% Black/African American 82,610 93 123.3 7.2% 29 38.8 NA 45 59.1 6.8% American Indian/Alaska 7,578 5 78.9 12.5% SN SN SN SN SN SN Native (AIAN) Asian Pacific Islander 14,338 9 98.0 13.0% SN SN SN 3 29.1 6.2% (API) Non-Hispanic/ Latina 765,989 1,349 137.1 0.5% 266 25.0 NA 433 45.3 0.3% Hispanic/ Latina 28,392 14 85.0 -2.5% SN SN SN 6 37.5 -5.2% Allegany County - NY 24,336 36 125.5 -0.2% 6 22.3 -4.2% 13 49.8 4.5% Cattaraugus County - NY 40,877 62 123.6 3.9% 12 22.0 -2.7% 25 48.9 -1.7% Chautauqua County - NY 68,726 116 132.1 -4.3% 17 17.9 10.9% 36 43.1 -1.7% Erie County - NY 477,826 840 139.4 2.1% 177 27.0 -2.6% 274 46.8 0.9% Genesee County - NY 30,275 47 122.2 -5.2% 8 19.3 -3.3% 12 30.1 3.2% Niagara County - NY 111,309 196 138.0 -2.0% 35 23.6 -1.6% 57 41.4 -2.1% Orleans County - NY 21,744 32 121.6 -9.4% 6 21.0 -3.1% 10 37.8 -17.2% Wyoming County - NY 19,287 34 141.8 5.1% 6 24.7 -0.5% 13 55.1 18.6% *Target as of the writing of this report. NA – data not available. SN – data suppressed due to small numbers (15 cases or fewer for the 5-year data period). Data are for years 2006-2010. Rates are in cases or deaths per 100,000. Age-adjusted rates are adjusted to the 2000 US standard population. Source of incidence and late-stage data: North American Association of Central Cancer Registries (NAACCR) – Cancer in North America (CINA) Deluxe Analytic File. Source of death rate data: Centers for Disease Control and Prevention (CDC) – National Center for Health Statistics (NCHS) death data in SEER*Stat. Source of death trend data: National Cancer Institute (NCI)/CDC State Cancer Profiles.

43 | Page Susan G. Komen® Upstate New York November 2017 Incidence Rates and Trends Summary For the United States, breast cancer incidence in Blacks/African-Americans is lower than in Whites overall. The most recent estimated breast cancer incidence rates for Asians and Pacific Islanders (APIs) and American Indians and Alaska Natives (AIANs) were lower than for Non- Hispanic Whites and Blacks/African-Americans. The most recent estimated incidence rates for Hispanics/Latinas were lower than for Non-Hispanic Whites and Blacks/African-Americans.

It’s important to remember that an increase in breast cancer incidence could also mean that more breast cancers are being found because more women are getting mammograms.

Central Region Overall, the breast cancer incidence rate in the Central Region was higher than that observed in the US as a whole and incidence had a greater downward trend than the US as a whole. The incidence rate and trend of the Central Region were not significantly different than that observed for the State of New York.

For the Central Region as a whole, the incidence rate was lower among Blacks/African- Americans than Whites, lower among APIs than Whites, and lower among AIANs than Whites. The incidence rate among Hispanics/Latinas was lower than among Non-Hispanics/Latinas.

The following county had an incidence rate significantly higher than the Central Region as a whole:  Monroe County, NY

The incidence rate was significantly lower in the following Central Region counties:  Cortland County, NY  Oswego County, NY  St. Lawrence County, NY

The rest of the counties had incidence rates and trends that were not significantly different than the Central Region as a whole.

Northeastern Region Overall, the breast cancer incidence rate in the Northeastern Region was slightly higher than that observed in the US as a whole and the incidence trend was slightly lower than the US as a whole. The incidence rate and trend of the Northeastern Region were not significantly different than that observed for the State of New York.

For the Northeastern Region as a whole, the incidence rate was lower among Blacks/African- Americans than Whites and lower among APIs than Whites. There were not enough data available within the Northeastern Region to report on AIANs so comparisons cannot be made for this racial group. The incidence rate among Hispanics/Latinas was lower than among Non- Hispanics/Latinas.

The incidence rate was significantly lower in the following Northeastern Region county:  Schoharie County, NY

44 | Page Susan G. Komen® Upstate New York November 2017 Significantly less favorable trends in breast cancer incidence rates were observed in the following Northeastern Region county:  Albany County, NY

Significantly more favorable trends in breast cancer incidence rates were observed in the following Northeastern Region county:  Greene County, NY

The rest of the counties had incidence rates and trends that were not significantly different than the Northeastern Region as a whole or did not have enough data available.

Twin Tiers Region Overall, the breast cancer incidence rate in the Twin Tiers Region was slightly higher than that observed in the US as a whole and the incidence trend was lower than the US as a whole. The incidence rate and trend of the Twin Tier Region were not significantly different than that observed for the State of New York. The incidence rate and trend of the Twin Tiers Region were not significantly different than that observed for the State of Pennsylvania.

For the Twin Tiers Region as a whole, the incidence rate was lower among Blacks/African- Americans than Whites and lower among APIs than Whites. There were not enough data available within the Twin Tiers Region to report on AIANs so comparisons cannot be made for this racial group. The incidence rate among Hispanics/Latinas was lower than among Non- Hispanics/Latinas.

None of the counties had substantially different incidence rates than the Twin Tiers Region as a whole.

Western Region Overall, the breast cancer incidence rate and trend in the Western Region were higher than that observed in the US as a whole. The incidence rate of the Western Region was significantly higher than that observed for the State of New York and the incidence trend was not significantly different than the State of New York.

For the Western Region as a whole, the incidence rate was lower among Blacks/African Americans than Whites, lower among APIs than Whites, and lower among AIANs than Whites. The incidence rate among Hispanics/Latinas was lower than among Non-Hispanics/Latinas.

None of the counties had substantially different incidence rates than the Western Region as a whole.

Death Rates and Trends Summary For the United States, breast cancer death rates in Blacks/African-Americans are substantially higher than in Whites overall. The most recent estimated breast cancer death rates for Asians Pacific Islanders (APIs) and American Indians/Alaska Natives (AIANs) were lower than for Non- Hispanic Whites and Blacks/African-Americans. The most recent estimated death rates for Hispanics/Latinas were lower than for Non-Hispanic Whites and Blacks/African-Americans.

Central Region 45 | Page Susan G. Komen® Upstate New York November 2017 Overall, the breast cancer death rate in the Central Region was slightly lower than that observed in the US as a whole and the death rate trend was not available for comparison with the US as a whole. The death rate of the Central Region was not significantly different than that observed for the State of New York.

For the Central Region as a whole, the death rate was higher among Blacks/African-Americans than Whites. There were not enough data available within the Central Region to report on APIs and AIANs so comparisons cannot be made for these racial groups. The death rate among Hispanics/Latinas was lower than among Non-Hispanics/Latinas.

The death rate was significantly lower in the following Central Region county:  Madison County, NY

The rest of the counties had death rates and trends that were not significantly different than the Central Region as a whole or did not have enough data available.

Northeastern Region Overall, the breast cancer death rate in the Northeastern Region was slightly lower than that observed in the US as a whole and the death rate trend was not available for comparison with the US as a whole. The death rate of the Northeastern Region was not significantly different than that observed for the State of New York.

For the Northeastern Region as a whole, the death rate was slightly higher among Blacks/African-Americans than Whites. There were not enough data available within the Northeastern Region to report on APIs and AIANs so comparisons cannot be made for these racial groups. Also, there were not enough data available within the Northeastern Region to report on Hispanics/Latinas so comparisons cannot be made for this group.

Significantly more favorable trends in breast cancer death rates were observed in the following Northeastern Region county:  Essex County, NY

The rest of the counties had death rates and trends that were not significantly different than the Northeastern Region as a whole or did not have enough data available.

Twin Tiers Region Overall, the breast cancer death rate in the Twin Tiers Region was slightly lower than that observed in the US as a whole and the death rate trend was not available for comparison with the US as a whole. The death rate of the Twin Tiers Region was not significantly different than that observed for the State of New York. The death rate of the Twin Tiers Region was not significantly different than that observed for the State of Pennsylvania.

For the United States, breast cancer death rates in Blacks/African-Americans are substantially higher than in Whites overall. The most recent estimated breast cancer death rates for APIs and AIANs were lower than for Non-Hispanic Whites and Blacks/African-Americans. The most recent estimated death rates for Hispanics/Latinas were lower than for Non-Hispanic Whites and Blacks/African-Americans. There were not enough data available within the Twin Tiers

46 | Page Susan G. Komen® Upstate New York November 2017 Region to report on Blacks/African-Americans, APIs, and AIANs so comparisons cannot be made for these racial groups. Also, there were not enough data available within the Twin Tiers Region to report on Hispanics/Latinas so comparisons cannot be made for this group.

Significantly less favorable trends in breast cancer death rates were observed in the following Twin Tiers Region county:  Steuben County, NY

The rest of the counties had death rates and trends that were not significantly different than the Twin Tiers Region as a whole or did not have enough data available.

Western Region Overall, the breast cancer death rate in the Western Region area was slightly higher than that observed in the US as a whole and the death rate trend was not available for comparison with the US as a whole. The death rate of the Western Region was significantly higher than that observed for the State of New York.

For the Western Region as a whole, the death rate was higher among Blacks/African Americans than Whites. There were not enough data available within the Western Region to report on APIs and AIANs so comparisons cannot be made for these racial groups. Also, there were not enough data available within The Western Region to report on Hispanics/Latinas so comparisons cannot be made for this group.

The death rate was significantly lower in the following Western Region county:  Chautauqua County

The rest of the counties had death rates and trends that were not significantly different than the Western Region as a whole.

Late-Stage Incidence Rates and Trends Summary For the United States, late-stage incidence rates in Blacks/African-Americans are higher than among Whites. Hispanics/Latinas tend to be diagnosed with late-stage breast cancers more often than Whites.

Central Region Overall, the breast cancer late-stage incidence rate in the Central Region was slightly lower than that observed in the US as a whole and the late-stage incidence trend was lower than the US as a whole. The late-stage incidence rate of the Central Region was significantly lower than that observed for the State of New York and the late-stage incidence trend was not significantly different than the State of New York.

For the Central Region as a whole, the late-stage incidence rate was higher among Blacks/African-Americans than Whites and lower among APIs than Whites. There were not enough data available within the Central Region to report on AIANs so comparisons cannot be made for this racial group. The late-stage incidence rate among Hispanics/Latinas was slightly lower than among Non-Hispanics/Latinas.

47 | Page Susan G. Komen® Upstate New York November 2017 The late-stage incidence rate was significantly lower in the following Central Region counties:  Jefferson County, NY  St. Lawrence County, NY

The rest of the counties had late-stage incidence rates and trends that were not significantly different than the Central Region as a whole.

Northeastern Region Overall, the breast cancer late-stage incidence rate in the Northeastern Region was similar to that observed in the US as a whole and the late-stage incidence trend was higher than the US as a whole. The late-stage incidence rate and trend of the Northeastern Region were not significantly different than that observed for the State of New York.

For the Northeastern Region as a whole, the late-stage incidence rate was lower among Blacks/African-Americans than Whites and lower among APIs than Whites. There were not enough data available within the Northeastern Region area to report on AIANs so comparisons cannot be made for this racial group. The late-stage incidence rate among Hispanics/Latinas was lower than among Non-Hispanics/Latinas.

The late-stage incidence rate was significantly lower in the following Northeastern Region county:  Franklin County, NY

Significantly more favorable trends in breast cancer late-stage incidence rates were observed in the following Northeastern Region county:  Greene County, NY

The rest of the counties had late-stage incidence rates and trends that were not significantly different than the Northeastern Region as a whole or did not have enough data available.

Twin Tiers Region Overall, the breast cancer late-stage incidence rate in the Twin Tiers Region was slightly lower than that observed in the US as a whole and the late-stage incidence trend was lower than the US as a whole. The late-stage incidence rate and trend of the Twin Tiers Region were not significantly different than that observed for the State of New York. The late-stage incidence rate of the 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 the State of Pennsylvania.

There were not enough data available within the Twin Tiers Region to report on Blacks/African- Americans, APIs, and AIANs so comparisons cannot be made for these racial groups. Also, there were not enough data available within the Twin Tiers Region to report on Hispanics/Latinas so comparisons cannot be made for this group.

None of the counties had substantially different late-stage incidence rates than the Twin Tiers Region as a whole.

48 | Page Susan G. Komen® Upstate New York November 2017 Western Region Overall, the breast cancer late-stage incidence rate in the Western Region was slightly higher than that observed in the US as a whole and the late-stage incidence trend was higher than the US as a whole. The late-stage incidence rate and trend of the Western Region were not significantly different than that observed for the State of New York.

For the Western Region as a whole, the late-stage incidence rate was higher among Blacks/African Americans than Whites and lower among APIs than Whites. There were not enough data available within the Western Region to report on AIANs so comparisons cannot be made for this racial group. The late-stage incidence rate among Hispanics/Latinas was lower than among Non-Hispanics/Latinas.

The late-stage incidence rate was significantly lower in the following Western Region county:  Genesee County

The rest of the counties had late-stage incidence rates and trends that were not significantly different than the Western Region as a whole.

Mammography Screening Getting regular screening mammograms (and treatment if diagnosed) lowers the risk of dying from breast cancer. Screening mammography can find breast cancer early, when the chances of survival are highest. Table 2.2 shows some screening recommendations among major organizations for women at average risk.

Table 2.2. Breast cancer screening recommendations for women at average risk *

American Cancer National Comprehensive US Preventive Services

Society Cancer Network Task Force

Informed decision-making with a health care provider at age 40 Informed decision-making with a health care provider Mammography every year Mammography every year ages 40-49 starting starting at age 45 at age 40 Mammography every 2 years Mammography every ages 50-74 other year beginning at age 55 *As of October 2015

Because having regular mammograms lowers the chances of dying from breast cancer, it’s important to know whether women are having mammograms when they should. This information can be used to identify groups of women who should be screened who need help in meeting the current recommendations for screening mammography. The Centers for Disease Control and Prevention’s (CDC) Behavioral Risk Factors Surveillance System (BRFSS) collected the data on mammograms that are used in this report. The data come from interviews

49 | Page Susan G. Komen® Upstate New York November 2017 with women age 50 to 74 from across the United States. During the interviews, each woman was asked how long it has been since she has had a mammogram. The proportions in Table 2.3 are based on the number of women age 50 to 74 who reported in 2012 having had a mammogram in the last two years.

The data have been weighted to account for differences between the women who were interviewed and all the women in the area. For example, if 20.0 percent of the women interviewed are Hispanic/Latina, but only 10.0 percent of the total women in the area are Hispanic/Latina, weighting is used to account for this difference.

The report uses the mammography screening proportion to show whether the women in an area are getting screening mammograms when they should. Mammography screening proportion is calculated from two pieces of information:  The number of women living in an area whom the BRFSS determines should have mammograms (i.e. women age 50 to 74).  The number of these women who actually had a mammogram during the past two years.

The number of women who had a mammogram is divided by the number who should have had one. For example, if there are 500 women in an area who should have had mammograms and 250 of those women actually had a mammogram in the past two years, the mammography screening proportion is 50.0 percent.

Because the screening proportions come from samples of women in an area and are not exact, Table 2.3 includes confidence intervals. A confidence interval is a range of values that gives an idea of how uncertain a value may be. It’s shown as two numbers—a lower value and a higher one. It is very unlikely that the true rate is less than the lower value or more than the higher value.

For example, if screening proportion was reported as 50.0 percent, with a confidence interval of 35.0 to 65.0 percent, the real rate might not be exactly 50.0 percent, but it’s very unlikely that it’s less than 35.0 or more than 65.0 percent.

In general, screening proportions at the county level have fairly wide confidence intervals. The confidence interval should always be considered before concluding that the screening proportion in one county is higher or lower than that in another county.

50 | Page Susan G. Komen® Upstate New York November 2017 Table 2.3. Proportion of women ages 50-74 with screening mammography in the last two years, self-report Proportion Confidence # of Women # w/ Self- Screened Interval of Interviewed Reported (Weighted Proportion Population Group (Sample Size) Mammogram Average) Screened US 174,796 133,399 77.5% 77.2%-77.7% New York 2,020 1,568 79.7% 77.4%-81.7% Pennsylvania 7,404 5,654 77.8% 76.6%-78.9% Central Region 421 327 77.8% 72.5%-82.4% White 398 308 77.1% 71.7%-81.8% Black/African-American 12 10 89.2% 45.7%-98.8% AIAN SN SN SN SN API SN SN SN SN Hispanic/ Latina SN SN SN SN Non-Hispanic/ Latina 413 321 79.1% 73.8%-83.5% Cayuga County - NY 13 12 88.5% 50.7%-98.3% Chenango County - NY 13 10 66.8% 34.4%-88.5% Cortland County - NY SN SN SN SN Herkimer County - NY 14 10 83.6% 47.3%-96.7% Jefferson County - NY 21 15 64.6% 37.9%-84.5% Lewis County - NY SN SN SN SN Livingston County - NY 21 19 94.3% 73.6%-99.0% Madison County - NY 13 9 76.4% 41.1%-93.7% Monroe County - NY 107 82 74.2% 63.2%-82.8% Oneida County - NY 43 35 79.6% 60.9%-90.8% Onondaga County - NY 74 58 85.2% 73.6%-92.3% Ontario County - NY 22 17 62.9% 41.2%-80.5% Oswego County - NY 20 15 72.2% 40.5%-90.8% St. Lawrence County - NY 24 19 80.6% 55.5%-93.3% Seneca County - NY SN SN SN SN Wayne County - NY 13 9 78.1% 37.5%-95.5% Yates County - NY SN SN SN SN Northeastern Region 248 188 80.2% 73.2%-85.8% White 240 181 79.3% 72.1%-84.9% Black/African-American SN SN SN SN AIAN SN SN SN SN API SN SN SN SN Hispanic/ Latina SN SN SN SN Non-Hispanic/ Latina 243 183 79.6% 72.5%-85.2% Albany County - NY 46 41 89.6% 74.7%-96.2% Clinton County - NY 18 13 78.9% 49.2%-93.5% Columbia County - NY 21 13 79.9% 52.3%-93.5% Essex County - NY SN SN SN SN Franklin County - NY 13 10 71.0% 39.8%-90.1% Fulton County - NY SN SN SN SN Greene County - NY 12 6 51.6% 20.2%-81.7% 51 | Page Susan G. Komen® Upstate New York November 2017 Proportion Confidence # of Women # w/ Self- Screened Interval of Interviewed Reported (Weighted Proportion Population Group (Sample Size) Mammogram Average) Screened Hamilton County - NY SN SN SN SN Montgomery County - NY SN SN SN SN Rensselaer County - NY 21 15 76.3% 48.1%-91.8% Saratoga County - NY 37 28 83.0% 62.8%-93.4% Schenectady County - NY 23 19 90.7% 64.3%-98.1% Schoharie County - NY SN SN SN SN Warren County - NY 20 18 83.8% 55.6%-95.5% Washington County - NY 10 8 91.2% 49.1%-99.1% Twin Tiers Region 893 672 75.3% 71.5%-78.7% White 883 664 75.0% 71.3%-78.3% Black/African-American SN SN SN SN AIAN SN SN SN SN API SN SN SN SN Hispanic/ Latina 12 10 98.1% 47.6%-100% Non-Hispanic/ Latina 877 659 74.9% 71.1%-78.3% Broome County - NY 24 18 84.7% 59.0%-95.5% Chemung County - NY SN SN SN SN Schuyler County - NY SN SN SN SN Steuben County - NY 12 8 68.5% 36.9%-89.0% Tioga County - NY 11 6 52.5% 22.1%-81.2% Tompkins County - NY 14 10 74.3% 45.7%-90.8% Bradford County - PA 732 548 74.1% 70.5%-77.4% Potter County - PA 28 22 81.3% 54.2%-94.1% Tioga County - PA 65 53 77.1% 59.8%-88.4% Western Region 275 211 78.8% 71.9%-84.4% White 254 195 78.8% 71.8%-84.5% Black/African American 11 8 74.5% 32.2%-94.7% AIAN SN SN SN SN API SN SN SN SN Hispanic/ Latina SN SN SN SN Non-Hispanic/ Latina 270 208 80.0% 73.2%-85.4% Allegany County - NY 13 8 60.4% 27.5%-86.0% Cattaraugus County - NY 19 15 85.8% 60.7%-95.9% Chautauqua County - NY 31 24 81.3% 55.3%-93.9% Erie County - NY 148 116 79.6% 70.1%-86.7% Genesee County - NY 14 7 39.2% 12.9%-73.8% Niagara County - NY 34 27 81.0% 61.8%-91.9% Orleans County - NY SN SN SN SN Wyoming County - NY SN SN SN SN SN – data suppressed due to small numbers (fewer than 10 samples). Data are for 2012. Source: CDC – Behavioral Risk Factor Surveillance System (BRFSS).

52 | Page Susan G. Komen® Upstate New York November 2017 Breast Cancer Screening Proportions Summary For the United States, breast cancer screening proportions among Blacks/African-Americans are similar to those among Whites overall. APIs have somewhat lower screening proportions than Whites and Blacks/African-Americans. Although data are limited, screening proportions among AIANs are similar to those among Whites. Screening proportions among Hispanics/Latinas are similar to those among Non-Hispanic Whites and Blacks/African- Americans.

Central Region The breast cancer screening proportion in the Central Region was not significantly different than that observed in the US as a whole. The screening proportion of the Central Region was not significantly different than the State of New York.

For the Central Region as a whole, the screening proportion was not significantly different among Blacks/African-Americans than Whites. There were not enough data available within the Central Region to report on APIs and AIANs so comparisons cannot be made for these racial groups. Also, there were not enough data available within the Central Region to report on Hispanics/Latinas so comparisons cannot be made for this group.

None of the counties had substantially different screening proportions than the Central Region as a whole.

Northeastern Region The breast cancer screening proportion in the Northeastern Region was not significantly different than that observed in the US as a whole. The screening proportion of the Northeastern Region area was not significantly different than the State of New York.

There were not enough data available within the Northeastern Region to report on Blacks/African-Americans, APIs, and AIANs so comparisons cannot be made for these racial groups. Also, there were not enough data available within the Northeastern Region to report on Hispanics/Latinas so comparisons cannot be made for this group.

None of the counties in the had substantially different screening proportions than the Northeastern Region as a whole.

Twin Tiers Region The breast cancer screening proportion in the Twin Tiers Region was not significantly different than that observed in the US as a whole. The screening proportion of the Twin Tiers Region was not significantly different than the State of New York and was not significantly different than the State of Pennsylvania.

There were not enough data available within the Twin Tiers Region to report on Blacks/African- Americans, APIs, and AIANs so comparisons cannot be made for these racial groups. The screening proportion among Hispanics/Latinas was not significantly different than among Non- Hispanics/Latinas.

53 | Page Susan G. Komen® Upstate New York November 2017 None of the counties had substantially different screening proportions than the Twin Tiers Region as a whole

Western Region The breast cancer screening proportion in the Western Region was not significantly different than that observed in the US as a whole. The screening proportion of the Western Region was not significantly different than the State of New York.

For the Western Region as a whole, the screening proportion was not significantly different among Blacks/African Americans than Whites. There were not enough data available within the Western Region to report on APIs and AIANs so comparisons cannot be made for these racial groups. Also, there were not enough data available within the Western Region to report on Hispanics/Latinas so comparisons cannot be made for this group.

None of the counties had substantially different screening proportions than the Western Region as a whole.

Population Characteristics The report includes basic information about the women in each area (demographic measures) and about factors like education, income, and unemployment (socioeconomic measures) in the areas where they live (Tables 2.4 and 2.5). Demographic and socioeconomic data can be used to identify which groups of women are most in need of help and to figure out the best ways to help them.

It is important to note that the report uses the race and ethnicity categories used by the US Census Bureau, and that race and ethnicity are separate and independent categories. This means that everyone is classified as both a member of one of the four race groups as well as either Hispanic/Latina or Non-Hispanic/Latina.

The demographic and socioeconomic data in this report are the most recent data available for US counties. All the data are shown as percentages. However, the percentages weren’t all calculated in the same way.  The race, ethnicity, and age data are based on the total female population in the area (e.g. the percent of females over the age of 40).  The socioeconomic data are based on all the people in the area, not just women.  Income, education and unemployment data don’t include children. They’re based on people age 15 and older for income and unemployment and age 25 and older for education.  The data on the use of English, called “linguistic isolation”, are based on the total number of households in the area. The Census Bureau defines a linguistically isolated household as one in which all the adults have difficulty with English.

54 | Page Susan G. Komen® Upstate New York November 2017 Table 2.4. Population characteristics – demographics

Black Non- Female Female Female /African- Hispanic Hispanic Age Age Age Population Group White American AIAN API /Latina /Latina 40 Plus 50 Plus 65 Plus US 78.8 % 14.1 % 1.4 % 5.8 % 83.8 % 16.2 % 48.3 % 34.5 % 14.8 %

New York 71.7 % 19.0 % 1.1 % 8.3 % 82.4 % 17.6 % 49.5 % 35.4 % 15.5 %

Pennsylvania 84.4 % 12.1 % 0.4 % 3.1 % 94.4 % 5.6 % 52.3 % 38.6 % 17.6 %

Central Region 87.7 % 9.2 % 0.6 % 2.5 % 95.5 % 4.5 % 50.9 % 37.0 % 16.2 % Cayuga County - NY 96.2 % 2.7 % 0.4 % 0.8 % 98.1 % 1.9 % 54.5 % 40.2 % 17.8 %

Chenango County - NY 97.9 % 1.1 % 0.4 % 0.6 % 98.2 % 1.8 % 55.4 % 40.9 % 18.2 %

Cortland County - NY 96.3 % 2.1 % 0.5 % 1.2 % 97.6 % 2.4 % 46.0 % 33.3 % 14.4 %

Herkimer County - NY 97.6 % 1.3 % 0.3 % 0.8 % 98.4 % 1.6 % 54.2 % 40.5 % 18.4 %

Jefferson County - NY 91.4 % 5.6 % 0.8 % 2.2 % 94.6 % 5.4 % 42.8 % 30.0 % 12.9 %

Lewis County - NY 98.2 % 1.0 % 0.2 % 0.5 % 98.9 % 1.1 % 51.6 % 37.7 % 16.4 %

Livingston County - NY 96.4 % 1.7 % 0.3 % 1.6 % 97.7 % 2.3 % 51.2 % 37.1 % 15.9 %

Madison County - NY 95.9 % 2.2 % 0.8 % 1.2 % 98.1 % 1.9 % 51.0 % 36.8 % 15.5 %

Monroe County - NY 78.7 % 17.2 % 0.5 % 3.6 % 92.6 % 7.4 % 50.3 % 36.4 % 15.9 %

Oneida County - NY 90.3 % 6.2 % 0.4 % 3.2 % 95.6 % 4.4 % 53.3 % 39.7 % 18.8 %

Onondaga County - NY 83.0 % 12.5 % 1.0 % 3.4 % 95.8 % 4.2 % 50.3 % 36.3 % 15.9 %

Ontario County - NY 95.5 % 2.7 % 0.4 % 1.5 % 96.7 % 3.3 % 55.1 % 40.1 % 17.4 %

Oswego County - NY 97.4 % 1.2 % 0.5 % 0.9 % 97.8 % 2.2 % 49.6 % 34.8 % 14.2 %

St. Lawrence County - NY 96.3 % 1.3 % 1.2 % 1.2 % 98.5 % 1.5 % 49.4 % 36.4 % 16.0 %

Seneca County - NY 97.2 % 1.6 % 0.2 % 0.9 % 98.0 % 2.0 % 54.3 % 40.9 % 17.8 %

Wayne County - NY 95.5 % 3.3 % 0.4 % 0.9 % 96.5 % 3.5 % 54.1 % 38.5 % 16.1 %

Yates County - NY 98.0 % 1.2 % 0.2 % 0.6 % 98.4 % 1.6 % 52.0 % 39.9 % 18.0 %

Northeastern Region 90.1 % 6.5 % 0.6 % 2.8 % 96.1 % 3.9 % 53.1 % 38.7 % 16.9 %

Albany County - NY 79.9 % 14.3 % 0.4 % 5.4 % 94.9 % 5.1 % 50.0 % 36.6 % 16.1 %

Clinton County - NY 96.1 % 2.0 % 0.5 % 1.5 % 98.1 % 1.9 % 50.9 % 36.7 % 15.6 %

Columbia County - NY 92.7 % 5.0 % 0.3 % 2.0 % 96.3 % 3.7 % 59.4 % 44.8 % 20.1 %

Essex County - NY 98.1 % 0.7 % 0.4 % 0.9 % 98.8 % 1.2 % 59.0 % 44.9 % 21.0 %

Franklin County - NY 90.0 % 0.8 % 8.6 % 0.6 % 98.7 % 1.3 % 52.5 % 38.1 % 16.5 %

Fulton County - NY 97.0 % 2.0 % 0.2 % 0.8 % 97.8 % 2.2 % 54.4 % 40.1 % 18.4 %

Greene County - NY 95.3 % 3.1 % 0.4 % 1.2 % 95.9 % 4.1 % 58.6 % 44.0 % 19.7 %

Hamilton County - NY 97.9 % 1.0 % 0.4 % 0.7 % 98.8 % 1.2 % 66.8 % 53.8 % 25.0 %

Montgomery County - NY 95.8 % 2.7 % 0.5 % 1.0 % 88.8 % 11.2 % 53.3 % 39.9 % 18.8 %

Rensselaer County - NY 89.5 % 7.7 % 0.4 % 2.4 % 96.0 % 4.0 % 51.4 % 37.0 % 15.4 %

Saratoga County - NY 95.6 % 1.9 % 0.2 % 2.3 % 97.5 % 2.5 % 53.5 % 37.5 % 15.4 %

Schenectady County - NY 83.3 % 11.7 % 0.7 % 4.3 % 94.1 % 5.9 % 51.9 % 37.8 % 17.1 %

55 | Page Susan G. Komen® Upstate New York November 2017 Black Non- Female Female Female /African- Hispanic Hispanic Age Age Age Population Group White American AIAN API /Latina /Latina 40 Plus 50 Plus 65 Plus

Schoharie County - NY 97.2 % 1.7 % 0.2 % 0.8 % 97.1 % 2.9 % 54.1 % 40.2 % 17.0 %

Warren County - NY 97.5 % 1.3 % 0.2 % 1.0 % 98.1 % 1.9 % 57.8 % 42.8 % 19.3 %

Washington County - NY 98.1 % 1.0 % 0.2 % 0.7 % 98.4 % 1.6 % 55.4 % 40.3 % 17.9 %

Twin Tiers Region 92.8 % 3.7 % 0.4 % 3.1 % 97.5 % 2.5 % 51.9 % 38.8 % 17.6 %

Broome County - NY 90.3 % 5.7 % 0.3 % 3.7 % 96.6 % 3.4 % 53.0 % 40.1 % 19.0 %

Chemung County - NY 92.4 % 5.7 % 0.3 % 1.6 % 97.8 % 2.2 % 53.1 % 39.6 % 17.9 %

Schuyler County - NY 97.9 % 1.4 % 0.3 % 0.4 % 98.9 % 1.1 % 58.0 % 42.9 % 18.5 %

Steuben County - NY 96.6 % 1.6 % 0.3 % 1.5 % 98.5 % 1.5 % 53.4 % 39.5 % 17.5 %

Tioga County - NY 97.8 % 1.1 % 0.2 % 0.9 % 98.6 % 1.4 % 55.3 % 40.5 % 17.3 %

Tompkins County - NY 84.7 % 5.1 % 0.6 % 9.6 % 95.5 % 4.5 % 40.2 % 29.6 % 12.3 %

Bradford County - PA 98.1 % 0.8 % 0.4 % 0.7 % 98.8 % 1.2 % 55.6 % 41.6 % 19.3 %

Potter County - PA 98.8 % 0.6 % 0.2 % 0.4 % 98.9 % 1.1 % 58.6 % 44.8 % 21.4 %

Tioga County - PA 97.8 % 1.2 % 0.3 % 0.6 % 98.8 % 1.2 % 53.8 % 40.9 % 19.3 %

Western Region 86.3 % 10.7 % 1.0 % 2.1 % 96.0 % 4.0 % 53.1 % 39.4 % 17.9 %

Allegany County - NY 97.1 % 1.4 % 0.3 % 1.2 % 98.6 % 1.4 % 49.5 % 37.2 % 16.6 %

Cattaraugus County - NY 93.9 % 1.7 % 3.6 % 0.8 % 98.3 % 1.7 % 52.3 % 39.1 % 17.0 %

Chautauqua County - NY 95.7 % 2.8 % 0.7 % 0.8 % 94.0 % 6.0 % 53.0 % 40.2 % 18.8 %

Erie County - NY 81.6 % 14.8 % 0.8 % 2.8 % 95.4 % 4.6 % 52.9 % 39.3 % 18.0 %

Genesee County - NY 94.9 % 3.0 % 1.2 % 0.9 % 97.6 % 2.4 % 54.1 % 39.5 % 17.9 %

Niagara County - NY 89.9 % 7.6 % 1.2 % 1.2 % 97.7 % 2.3 % 54.5 % 40.3 % 18.1 %

Orleans County - NY 92.4 % 6.2 % 0.7 % 0.7 % 96.0 % 4.0 % 53.4 % 38.1 % 16.0 %

Wyoming County - NY 98.5 % 0.5 % 0.3 % 0.6 % 98.6 % 1.4 % 54.2 % 38.9 % 16.6 % Data are for 2011. Data are in the percentage of women in the population. Source: US Census Bureau – Population Estimates

56 | Page Susan G. Komen® Upstate New York November 2017 Table 2.5. Population characteristics – socioeconomics Income Below In Income 250% Medically No Health Less than Below Poverty Linguistic- Under- Insurance HS 100% (Age: Un- Foreign ally In Rural served (Age: Population Group Education Poverty 40-64) employed Born Isolated Areas Areas 40-64) US 14.6 % 14.3 % 33.3 % 8.7 % 12.8 % 4.7 % 19.3 % 23.3 % 16.6 % New York 15.4 % 14.5 % 32.3 % 8.2 % 21.8 % 8.3 % 12.1 % 20.3 % 12.1 % Pennsylvania 12.1 % 12.6 % 30.3 % 7.9 % 5.7 % 2.2 % 21.3 % 15.2 % 11.0 % Central Region 12.0 % 14.0 % 31.6 % 7.4 % 5.7 % 1.9 % 31.4 % 11.8 % 10.1 % Cayuga County - NY 15.0 % 12.4 % 32.6 % 7.0 % 2.4 % 0.5 % 55.8 % 26.9 % 11.0 % Chenango County - NY 14.0 % 13.9 % 37.5 % 8.7 % 1.9 % 0.9 % 83.4 % 0.0 % 11.6 % Cortland County - NY 10.4 % 15.0 % 33.2 % 7.6 % 2.1 % 0.9 % 44.3 % 24.2 % 10.1 % Herkimer County - NY 12.6 % 14.6 % 36.0 % 7.3 % 3.3 % 0.7 % 51.8 % 6.7 % 11.5 % Jefferson County - NY 11.9 % 15.1 % 37.3 % 9.9 % 4.5 % 1.0 % 48.0 % 34.1 % 11.2 % Lewis County - NY 13.1 % 13.6 % 37.4 % 6.6 % 1.4 % 0.3 % 86.8 % 8.0 % 12.2 % Livingston County - NY 11.8 % 11.7 % 28.6 % 5.4 % 2.4 % 0.5 % 54.7 % 10.7 % 8.9 % Madison County - NY 10.7 % 10.1 % 29.2 % 5.9 % 2.0 % 0.2 % 58.9 % 0.0 % 9.4 % Monroe County - NY 11.4 % 14.4 % 30.1 % 7.5 % 8.3 % 3.0 % 6.4 % 13.8 % 9.1 % Oneida County - NY 13.6 % 15.1 % 32.8 % 7.2 % 6.9 % 2.5 % 33.0 % 11.8 % 10.7 % Onondaga County - NY 11.0 % 13.8 % 29.6 % 6.7 % 7.0 % 2.2 % 12.6 % 3.9 % 10.0 % Ontario County - NY 8.4 % 9.7 % 25.4 % 6.1 % 3.3 % 1.1 % 47.5 % 0.0 % 9.2 % Oswego County - NY 13.6 % 15.7 % 35.8 % 10.1 % 1.9 % 0.4 % 61.8 % 22.9 % 10.6 % St. Lawrence County - NY 13.6 % 17.6 % 38.6 % 9.8 % 4.1 % 0.9 % 62.0 % 22.7 % 12.6 % Seneca County - NY 17.0 % 11.7 % 32.9 % 5.9 % 1.7 % 0.8 % 58.7 % 5.4 % 10.5 % Wayne County - NY 12.8 % 11.1 % 30.4 % 7.1 % 2.9 % 1.1 % 60.7 % 0.0 % 10.4 % Yates County - NY 15.4 % 15.4 % 36.4 % 4.9 % 1.5 % 1.1 % 71.2 % 0.0 % 11.8 %

Northeastern Region 11.1 % 11.8 % 27.6 % 7.2 % 5.7 % 1.4 % 35.8 % 6.0 % 9.5 %

Albany County - NY 8.9 % 12.8 % 24.5 % 6.5 % 8.9 % 2.2 % 9.7 % 10.4 % 8.3 %

Clinton County - NY 15.9 % 13.8 % 31.9 % 7.9 % 4.9 % 0.9 % 64.2 % 0.0 % 9.9 %

Columbia County - NY 12.5 % 9.3 % 27.9 % 7.6 % 5.6 % 1.0 % 73.3 % 2.6 % 11.5 %

Essex County - NY 12.1 % 12.2 % 32.9 % 7.2 % 4.9 % 1.1 % 74.9 % 1.0 % 11.5 %

Franklin County - NY 16.7 % 16.9 % 37.4 % 8.1 % 5.6 % 1.5 % 62.7 % 18.0 % 12.8 %

Fulton County - NY 16.6 % 16.5 % 37.1 % 9.3 % 2.0 % 0.6 % 50.4 % 2.5 % 10.4 %

Greene County - NY 15.2 % 14.4 % 33.7 % 8.5 % 5.1 % 0.8 % 73.1 % 0.0 % 11.5 %

Hamilton County - NY 11.2 % 9.5 % 32.8 % 2.8 % 2.6 % 1.2 % 100.0 % 100.0 % 14.1 %

Montgomery County - NY 16.8 % 16.3 % 36.2 % 10.6 % 4.0 % 3.9 % 40.9 % 27.3 % 10.8 %

Rensselaer County - NY 10.6 % 12.1 % 25.7 % 7.6 % 5.2 % 1.4 % 30.5 % 4.3 % 9.1 %

Saratoga County - NY 7.4 % 6.5 % 19.5 % 5.3 % 4.0 % 0.7 % 30.0 % 0.0 % 7.3 %

Schenectady County - NY 9.9 % 12.0 % 28.7 % 6.7 % 8.7 % 1.9 % 8.2 % 0.0 % 10.2 %

Schoharie County - NY 12.8 % 10.7 % 29.8 % 9.8 % 2.5 % 0.3 % 82.8 % 0.0 % 9.9 %

Warren County - NY 9.4 % 10.7 % 29.3 % 6.4 % 3.2 % 0.5 % 33.9 % 21.2 % 10.1 %

Washington County - NY 13.7 % 11.9 % 33.4 % 8.5 % 2.2 % 0.2 % 67.9 % 0.0 % 10.8 %

Twin Tiers Region 11.4 % 15.6 % 33.8 % 7.3 % 4.7 % 1.1 % 47.9 % 9.8 % 10.9 %

Broome County - NY 11.3 % 16.2 % 34.7 % 7.6 % 5.9 % 1.6 % 26.1 % 9.6 % 10.5 %

57 | Page Susan G. Komen® Upstate New York November 2017 Income Below In Income 250% Medically No Health Less than Below Poverty Linguistic- Under- Insurance HS 100% (Age: Un- Foreign ally In Rural served (Age: Population Group Education Poverty 40-64) employed Born Isolated Areas Areas 40-64)

Chemung County - NY 12.1 % 16.5 % 32.8 % 6.9 % 2.6 % 0.7 % 24.2 % 2.7 % 9.3 %

Schuyler County - NY 11.8 % 9.0 % 36.0 % 6.4 % 1.4 % 0.1 % 81.2 % 100.0 % 11.5 %

Steuben County - NY 12.6 % 15.0 % 36.7 % 8.9 % 2.4 % 0.5 % 60.4 % 3.2 % 12.3 %

Tioga County - NY 9.5 % 9.5 % 29.2 % 7.6 % 1.7 % 0.3 % 65.7 % 0.0 % 9.0 %

Tompkins County - NY 7.4 % 20.4 % 25.7 % 5.6 % 12.7 % 2.8 % 43.3 % 0.0 % 9.7 %

Bradford County - PA 14.5 % 13.6 % 37.1 % 6.0 % 1.4 % 0.6 % 72.2 % 1.9 % 12.5 %

Potter County - PA 13.0 % 14.6 % 39.4 % 8.5 % 0.9 % 0.4 % 100.0 % 15.3 % 13.3 %

Tioga County - PA 12.6 % 15.7 % 37.4 % 8.1 % 1.2 % 0.1 % 90.1 % 46.7 % 13.9 %

Western Region 11.5 % 14.3 % 32.4 % 8.1 % 4.8 % 1.7 % 24.0 % 19.7 % 9.8 %

Allegany County - NY 12.1 % 16.6 % 38.7 % 8.6 % 1.9 % 0.3 % 78.7 % 18.8 % 10.4 %

Cattaraugus County - NY 12.6 % 16.7 % 38.9 % 8.8 % 1.5 % 0.8 % 61.8 % 28.2 % 13.5 %

Chautauqua County - NY 13.1 % 17.7 % 38.6 % 8.1 % 1.9 % 1.5 % 43.9 % 0.0 % 9.7 %

Erie County - NY 11.1 % 14.2 % 30.7 % 8.0 % 6.2 % 2.3 % 9.4 % 22.9 % 9.1 %

Genesee County - NY 9.5 % 12.5 % 30.6 % 7.5 % 2.9 % 0.8 % 59.9 % 0.0 % 11.2 %

Niagara County - NY 11.1 % 12.8 % 32.6 % 7.9 % 3.7 % 0.8 % 22.4 % 0.0 % 10.5 %

Orleans County - NY 15.0 % 12.1 % 34.6 % 9.9 % 3.6 % 0.4 % 60.9 % 100.0 % 12.2 %

Wyoming County - NY 13.8 % 10.1 % 31.2 % 6.8 % 2.4 % 0.3 % 64.1 % 44.5 % 10.6 % Data are in the percentage of people (men and women) in the population. Source of health insurance data: US Census Bureau – Small Area Health Insurance Estimates (SAHIE) for 2011. Source of rural population data: US Census Bureau – Census 2010. Source of medically underserved data: Health Resources and Services Administration (HRSA) for 2013. Source of other data: US Census Bureau – American Community Survey (ACS) for 2007-2011.

Population Characteristics Summary Central Region Proportionately, the Central Region has a substantially larger White female population than the US as a whole, a smaller Black/African-American female population, a substantially smaller API female population, a slightly smaller AIAN female population, and a substantially smaller Hispanic/Latina female population. The Central Region’s female population is slightly older than that of the US as a whole. The Central Region’s education level is slightly higher than and income level is slightly higher than those of the US as a whole. There is a slightly smaller percentage of people who are unemployed in the Central Region. The Central Region has a substantially smaller percentage of people who are foreign born and a slightly smaller percentage of people who are linguistically isolated. There is a substantially larger percentage of people living in rural areas, a substantially smaller percentage of people without health insurance, and a substantially smaller percentage of people living in medically underserved areas.

The following county has substantially larger Black/African-American female population percentages than that of the Central Region as a whole:  Monroe County, NY

58 | Page Susan G. Komen® Upstate New York November 2017 Northeastern Region Proportionately, the Northeastern Region has a substantially larger White female population than the US as a whole, a substantially smaller Black/African-American female population, a substantially smaller Asian and Pacific Islander (API) female population, a slightly smaller American Indian and Alaska Native (AIAN) female population, and a substantially smaller Hispanic/Latina female population. The Affiliate’s female population is slightly older than that of the US as a whole. The Northeastern Region’s education level is slightly higher than and income level is slightly higher than those of the US as a whole. There are a slightly smaller percentage of people who are unemployed in the Northeastern Region. The Northeastern Region has a substantially smaller percentage of people who are foreign born and a substantially smaller percentage of people who are linguistically isolated. There are a substantially larger percentage of people living in rural areas, a substantially smaller percentage of people without health insurance, and a substantially smaller percentage of people living in medically underserved areas.

The following counties have substantially larger Black/African-American female population percentages than that of the Northeastern Region as a whole:  Albany County, NY  Schenectady County, NY

The following county has substantially larger AIAN female population percentages than that of the Northeastern Region as a whole:  Franklin County, NY

The following county has substantially larger Hispanic/Latina female population percentages than that of the Northeastern Region as a whole:  Montgomery County, NY

The following county has substantially older female population percentages than that of the Northeastern Region as a whole:  Hamilton County, NY

The following counties have substantially lower education levels than that of the Northeastern Region as a whole:  Franklin County, NY  Fulton County, NY  Montgomery County, NY

The following county has substantially lower income levels than that of the Northeastern Region as a whole:  Franklin County, NY

The following county has substantially lower employment levels than that of the Northeastern Region area as a whole:  Montgomery County, NY

59 | Page Susan G. Komen® Upstate New York November 2017 Twin Tiers Region Proportionately, the Twin Tiers Region has a substantially larger White female population than the US as a whole, a substantially smaller Black/African-American female population, a slightly smaller Asian and Pacific Islander (API) female population, a slightly smaller American Indian and Alaska Native (AIAN) female population, and a substantially smaller Hispanic/Latina female population. The Twin Tiers Region’s female population is slightly older than that of the US as a whole. The Twin Tiers Region’s education level is slightly higher than, and its income level is slightly lower than, those of the US as a whole. There is a slightly smaller percentage of people who are unemployed in the Twin Tiers Region. The Twin Tiers Region has a substantially smaller percentage of people who are foreign born and a substantially smaller percentage of people who are linguistically isolated. There is a substantially larger percentage of people living in rural areas, a substantially smaller percentage of people without health insurance, and a substantially smaller percentage of people living in medically underserved areas.

The following county has a substantially larger API female population percentage than that of the Twin Tiers Region as a whole: • Tompkins County, NY

The following county has a substantially larger foreign born population percentage than that of the Twin Tiers Region as a whole: • Tompkins County, NY

Western Region Proportionately, the Western Region has a substantially larger White female population than the US as a whole, a slightly smaller Black/African American female population, a substantially smaller Asian and Pacific Islander (API) female population, a slightly smaller American Indian and Alaska Native (AIAN) female population, and a substantially smaller Hispanic/Latina female population. The Western Region’s female population is slightly older than that of the US as a whole. The Western Region’s education level is slightly higher than and income level is slightly higher than those of the US as a whole. There is a slightly smaller percentage of people who are unemployed in the Western Region. The Western Region has a substantially smaller percentage of people who are foreign born and a slightly smaller percentage of people who are linguistically isolated. There is a slightly larger percentage of people living in rural areas, a substantially smaller percentage of people without health insurance, and a slightly smaller percentage of people living in medically underserved areas.

None of the counties have substantially different population characteristics than the Western Region as a whole.

Priority Areas Healthy People 2020 Forecasts Healthy People 2020 (HP2020) is a major federal government initiative that provides specific health objectives for communities and for the country as a whole. Many national health organizations use HP2020 targets to monitor progress in reducing the burden of disease and improve the health of the nation. Likewise, Komen believes it is important to refer to HP2020 to see how areas across the country are progressing towards reducing the burden of breast cancer.

60 | Page Susan G. Komen® Upstate New York November 2017 HP2020 has several cancer-related objectives, including:  Reducing women’s death rate from breast cancer (Target as of the writing of this report: 20.6 cases per 100,000 women).  Reducing the number of breast cancers that are found at a late-stage (Target as of the writing of this report: 41.0 cases per 100,000 women).

To see how well counties in the Komen Upstate New York service area are progressing toward these targets, the report uses the following information:  County breast cancer death rate and late-stage diagnosis data for years 2006 to 2010.  Estimates for the trend (annual percent change) in county breast cancer death rates and late-stage diagnoses for years 2006 to 2010.  Both the data and the HP2020 target are age-adjusted.

These data are used to estimate how many years it will take for each county to meet the HP2020 objectives. Because the target date for meeting the objective is 2020, and 2008 (the middle of the 2006-2010 period) was used as a starting point, a county has 12 years to meet the target.

Death rate and late-stage diagnosis data and trends are used to calculate whether an area will meet the HP2020 target, assuming that the trend seen in years 2006 to 2010 continues for 2011 and beyond.

Identification of priority areas The purpose of this report is to combine evidence from many credible sources and use the data to identify the highest priority areas for breast cancer programs (i.e. the areas of greatest need). Classification of priority areas are based on the time needed to achieve HP2020 targets in each area. These time projections depend on both the starting point and the trends in death rates and late-stage incidence.

Late-stage incidence reflects both the overall breast cancer incidence rate in the population and the mammography screening coverage. The breast cancer death rate reflects the access to care and the quality of care in the health care delivery area, as well as cancer stage at diagnosis.

There has not been any indication that either one of the two HP2020 targets is more important than the other. Therefore, the report considers them equally important.

Counties are classified as follows (Table 2.6):  Counties that are not likely to achieve either of the HP2020 targets are considered to have the highest needs.  Counties that have already achieved both targets are considered to have the lowest needs.  Other counties are classified based on the number of years needed to achieve the two targets.

61 | Page Susan G. Komen® Upstate New York November 2017 Table 2.6. Needs/priority classification based on the projected time to achieve HP2020 breast cancer targets Time to Achieve Late-stage Incidence Reduction Target 13 years 7-12 yrs. 0 – 6 yrs. Currently Unknown or longer meets target 13 years or Medium Highest High Medium Highest longer High Time to Achieve 7-12 yrs. Medium Medium Medium High Medium Death Rate High Low High Reduction Target 0 – 6 yrs. Medium Medium Medium Medium Low High Low Low Currently Medium Medium Low Lowest Lowest meets target Low Unknown Medium Medium Highest Lowest Unknown High Low

If the time to achieve a target cannot be calculated for one of the HP2020 indicators, then the county is classified based on the other indicator. If both indicators are missing, then the county is not classified. This doesn’t mean that the county may not have high needs; it only means that sufficient data are not available to classify the county.

Affiliate Service Area Healthy People 2020 Forecasts and Priority Areas The results presented in Table 2.7 help identify which counties have the greatest needs when it comes to meeting the HP2020 breast cancer targets.  For counties in the “13 years or longer” category, current trends would need to change to achieve the target.  Some counties may currently meet the target but their rates are increasing and they could fail to meet the target if the trend is not reversed.

Trends can change for a number of reasons, including:  Improved screening programs could lead to breast cancers being diagnosed earlier, resulting in a decrease in both late-stage incidence rates and death rates.  Improved socioeconomic conditions, such as reductions in poverty and linguistic isolation could lead to more timely treatment of breast cancer, causing a decrease in death rates.

The data in this table should be considered together with other information on factors that affect breast cancer death rates such as screening percentages and key breast cancer death determinants such as poverty and linguistic isolation.

62 | Page Susan G. Komen® Upstate New York November 2017 Table 2.7. Intervention priorities for Komen Upstate New York service area with predicted time to achieve the HP2020 breast cancer targets and key population characteristics Predicted Time Predicted Time to to Achieve Late- Komen Achieve Death stage Upstate New Rate Incidence Key Population County York Region Priority Target Target Characteristics Monroe County - Central Highest 13 years or 13 years or %Black/African- NY longer longer American Seneca County - Central Highest 13 years or 13 years or Rural NY longer longer Wyoming County - Western Highest 13 years or 13 years or Rural, medically NY longer longer underserved Erie County - NY Western High 11 years 13 years or longer Saratoga County - Northeastern High 8 years 13 years or NY longer Albany County - Northeastern Medium High 1 year 13 years or %Black/African- NY longer American Allegany County - Western Medium High 2 years 13 years or Rural NY longer Chautauqua Western Medium High 13 years or 3 years Rural County - NY longer Chenango County Central Medium High 1 year 13 years or Rural - NY longer Franklin County - Northeastern Medium High 2 years 13 years or %AIAN, education, NY longer poverty, rural, medically underserved Fulton County - NY Northeastern Medium High 2 years 13 years or Education, rural longer Montgomery Northeastern Medium High 1 year 13 years or %Hispanic/Latina, County - NY longer education, employment, rural, medically underserved Schenectady Northeastern Medium High 4 years 13 years or %Black/African- County - NY longer American Tioga County - NY Twin Tiers Medium High 1 year 13 years or Rural longer Bradford County - Twin Tiers Medium High 2 years 13 years or Rural PA longer Cattaraugus Western Medium 3 years 11 years Rural, medically County - NY underserved Cortland County - Central Medium Currently meets 13 years or Rural, medically NY target longer underserved Genesee County - Western Medium Currently meets 13 years or Rural NY target longer Greene County - Northeastern Medium 10 years 2 years Rural NY Niagara County - Western Medium 9 years 1 year NY

63 | Page Susan G. Komen® Upstate New York November 2017 Predicted Time Predicted Time to to Achieve Late- Komen Achieve Death stage Upstate New Rate Incidence Key Population County York Region Priority Target Target Characteristics Oswego County - Central Medium Currently meets 13 years or Rural, medically NY target longer underserved Schoharie County Northeastern Medium Currently meets 13 years or Rural - NY target longer Steuben County - Twin Tiers Medium 13 years or Currently meets Rural NY longer target Warren County - Northeastern Medium 13 years or Currently meets Medically underserved NY longer target Washington Northeastern Medium 9 years 1 year Rural County - NY Chemung County - Twin Tiers Medium Low 1 year 1 year NY Onondaga County Central Medium Low 4 years 2 years - NY Wayne County - Central Medium Low 3 years 1 year Rural NY Potter County - PA Twin Tiers Medium Low 10 years Currently meets Rural, medically target underserved Tioga County - PA Twin Tiers Medium Low 2 years 3 years Rural, medically underserved Cayuga County - Central Low Currently meets 3 years Rural, medically NY target underserved Herkimer County - Central Low Currently meets 1 year Rural NY target Oneida County - Central Low Currently meets 1 year NY target Ontario County - Central Low Currently meets 2 years Rural NY target Orleans County - Western Low 1 year Currently meets Rural, medically NY target underserved Rensselaer County Northeastern Low Currently meets 4 years - NY target Tompkins County - Twin Tiers Low 3 years Currently meets %API, foreign NY target Broome County - Twin Tiers Lowest Currently meets Currently meets NY target target Clinton County - Northeastern Lowest Currently meets Currently meets Rural NY target target Columbia County - Northeastern Lowest Currently meets Currently meets Rural NY target target Essex County - NY Northeastern Lowest Currently meets Currently meets Rural target target Jefferson County - Central Lowest Currently meets Currently meets Rural, medically NY target target underserved

64 | Page Susan G. Komen® Upstate New York November 2017 Predicted Time Predicted Time to to Achieve Late- Komen Achieve Death stage Upstate New Rate Incidence Key Population County York Region Priority Target Target Characteristics Lewis County - NY Central Lowest SN Currently meets Rural target Livingston County Central Lowest Currently meets Currently meets Rural - NY target target Madison County - Central Lowest Currently meets Currently meets Rural NY target target St. Lawrence Central Lowest Currently meets Currently meets Rural, medically County - NY target target underserved Schuyler County - Twin Tiers Lowest SN Currently meets Rural, medically NY target underserved Yates County - NY Central Lowest NA Currently meets Rural target Hamilton County - Northeastern Undetermined SN SN Older, rural, medically NY underserved NA – data not available. SN – data suppressed due to small numbers (15 cases or fewer for the 5-year data period).

65 | Page Susan G. Komen® Upstate New York November 2017 Map of Intervention Priority Areas Figures 2.1, 2.2, 2.3 and 2.4 shows a map of the intervention priorities for the counties in the Affiliate service area. When both of the indicators used to establish a priority for a county are not available, the priority is shown as “undetermined” on the map.

Figure 2.1. Intervention priorities, Central Region

66 | Page Susan G. Komen® Upstate New York November 2017

Figure 2.2. Intervention priorities, Northeastern Region

67 | Page Susan G. Komen® Upstate New York November 2017

Figure 2.3. Intervention priorities, Twin Tiers Region

Figure 2.4. Intervention priorities, Western Region

68 | Page Susan G. Komen® Upstate New York November 2017

Data Limitations The following data limitations need to be considered when utilizing the data of the Quantitative Data Report:  The most recent data available were used but, for cancer incidence and deaths, these data are still several years behind.  For some areas, data might not be available or might be of varying quality.  Areas with small populations might not have enough breast cancer cases or breast cancer deaths each year to support the generation of reliable statistics.  There are often several sources of cancer statistics for a given population and geographic area; therefore, other sources of cancer data may result in minor differences in the values even in the same time period.  Data on cancer rates for specific racial and ethnic subgroups such as Somali, Hmong, or Ethiopian are not generally available.  The various types of breast cancer data in this report are inter-dependent.  There are many factors that impact breast cancer risk and survival for which quantitative data are not available. Some examples include family history, genetic markers like HER2 and BRCA, other medical conditions that can complicate treatment, and the level of family and community support available to the patient.  The calculation of the years needed to meet the HP2020 objectives assume that the current trends will continue until 2020. However, the trends can change for a number of reasons.  Not all breast cancer cases have a stage indication.

Quantitative Data Report Conclusions Highest Priority Areas Central Region Two counties in the Central Region are in the highest priority category. Both, Monroe County and Seneca County, are not likely to meet either the death rate or late-stage incidence rate HP2020 targets.

The incidence rate in Monroe County (139.7 per 100,000) is significantly higher than the Central Region as a whole (127.9 per 100,000).

Monroe County has a relatively large Black/African-American population.

Western Region One county in the Western Region is in the highest priority category. Wyoming County is not likely to meet either the death rate or late-stage incidence rate HP2020 targets. Late-stage incidence trends in Wyoming County (18.6 percent per year) indicate that late-stage incidence rates may be increasing, although not significantly.

High Priority Areas Northeastern Region One county in the Northeastern Region is in the high priority category. Saratoga County is not likely to meet the late-stage incidence rate HP2020 target.

69 | Page Susan G. Komen® Upstate New York November 2017 The incidence rate in Saratoga County (135.4 per 100,000) appears to be higher than the Northeastern Region as a whole (125.7 per 100,000), although not significantly. The death rate in Saratoga County (24.6 per 100,000) appears to be higher than the Northeastern Region as a whole (20.9 per 100,000), although not significantly. The late-stage incidence trend in Saratoga County (3.9 percent per year) indicates that the late-stage incidence rate may be increasing.

Western Region One county in the Western Region is in the high priority category. Erie County is not likely to meet the late-stage incidence rate HP2020 target. The death rate in Erie County (27.0 per 100,000) appears to be higher than the Western Region as a whole (24.8 per 100,000) although not significantly.

Medium High Priority Areas Central Region One county in the Central Region is in the medium high priority category. Chenango County is not likely to meet the late-stage incidence rate HP2020 target.

The late-stage incidence rate in Chenango County (45.8 per 100,000) appears to be higher than the Central Region as a whole (41.1 per 100,000), although not significantly. The late-stage incidence trend in Chenango County (8.9 percent per year) indicates that the late-stage incidence rate may be increasing.

Northeastern Region Five counties in the Northeastern Region are in the medium high priority category. All of the five, Albany County, Franklin County, Fulton County, Montgomery County and Schenectady County, are not likely to meet the late-stage incidence rate HP2020 target.

Incidence trends in Albany County (4.8 percent per year) are significantly less favorable than the Northeastern Region as a whole (-0.5 percent per year). Albany County has a relatively large Black/African-American population.

Franklin County has a relatively large AIAN population, low education levels and high poverty levels. Fulton County has low education levels. Montgomery County has a relatively large Hispanic/Latina population, low education levels and high unemployment. Schenectady County has a relatively large Black/African-American population.

Twin Tiers Region Two counties in the Twin Tiers Region are in the medium high priority category. Both of the two, Tioga County, NY and Bradford County, PA, are not likely to meet the late-stage incidence rate HP2020 target.

The incidence rate in Tioga County, NY (132.6 per 100,000) appears to be higher than the Twin Tiers Region as a whole (123.4 per 100,000), although not significantly. The incidence trend in Tioga County, NY (3.9 percent per year) indicates that the incidence rate may be increasing. The late-stage incidence rate in Bradford County, PA (49.4 per 100,000) appears to be higher than the Twin Tiers Region as a whole (41.1 per 100,000), although not significantly. The late-

70 | Page Susan G. Komen® Upstate New York November 2017 stage incidence trends in both Tioga County, NY (10.8 percent per year) and Bradford County, PA (1.8 percent per year) indicate that late-stage incidence rates may be increasing.

Additional Quantitative Data Exploration

Central Region Additional data for the Central Region were obtained from New York State Department of Health (NYS DOH) Cancer Data for New York State Counties (2007-2011), available at http://www.health.ny.gov/statistics/cancer/registry/vol1.htm (accessed 5/1/14). These data were obtained from the NYS DOH website (above) for each county and compiled in the table below. The purpose of obtaining these data were to confirm findings from the Central Region QDR for incidence and death rates for counties in the Central Region. NYSDOH Table 2.8 displays breast cancer incidence rates and death rates per 100,000 women in the Central Region from 2007 to 2011.

Table 2.8. (NYSDOH): New York State cancer data by county, Central Region, 2007-2011 Incidence Incidence Death Rate Rate per Rate 95% Death Rate 95% 100,000 Confidence per 100,000 Confidence County Women Interval (+/-) Women Interval (+/-) Cayuga 126.4 14.4 19.5 5.3 Chenango 116.6 17.1 22.9 7.2 Cortland 117.7 18.1 19.8 7.5 Herkimer 120.5 15.4 17.9 5.5 Jefferson 122.6 13.0 17.0 4.8 Lewis 100.4 22.3 18.3 9.4 Livingston 132.3 16.8 21.9 6.7 Madison 124.5 15.3 14.2 4.8 Monroe 140.9 5.0 23.1 2.0 Oneida 113.2 7.9 19.5 3.1 Onondaga 130.6 6.1 21.7 2.4 Ontario 128.1 12.2 18.3 4.6 Oswego 102.8 10.9 20.4 4.8 Seneca 140.5 23.4 23.6 9.0 St. Lawrence 109.7 11.6 18.6 4.8 Wayne 131.2 13.4 18.9 5.0 Yates 120.7 24.6 20.8 10.5 Highest incidence and/or death rates are highlighted in red.

Western Region In addition to the information provided in the preceding Quantitative Data Report, staging data, broken down by race were collected in order to construct a more comprehensive overview of the breast cancer burden in Erie County, which is the most populated county in Western Region. The supplemental data were accessed through a direct email request to the New York State Cancer Registry (http://www.health.ny.gov/statistics/cancer/registry/), which is nationally

71 | Page Susan G. Komen® Upstate New York November 2017 certified through the North American Association of Central Cancer Registries, in order to ensure timely, high-quality data collection and reporting.

The Western Region is comprised of eight counties, six of which are rural: Allegany, Cattaraugus, Chautauqua, Genesee, Orleans, and Wyoming. The residents of these counties are defined as primarily low-income and medically underserved. Overall, the Western Region is 86.3 percent White, which is higher than the US average of 78.8 percent. In six of the eight counties in the service area, staging data was not reported because there were not enough minority residents to report on.

Unlike the rural counties, Erie and Niagara Counties have more culturally diverse urban centers than the rest of the region. Erie County has a higher Hispanic/Latina population than the rest of the region at 4.6 percent. The county is also comprised of 14.8 percent Black/African-American residents, while 7.6 percent of the residents of Niagara County are Black/African-American. Black/African-American women are known to have higher mortality rates from breast cancer and since the stage at diagnosis can be a factor in death rates for breast cancer, additional data was collected to determine if there was a disparity in staging among minority residents in Erie County and the City of Buffalo.

The additional data collected from the New York State Cancer Registry illustrate a clear staging disparity among Black/African-American and Hispanic/Latina women in Erie County (Table 2.9). In Erie County both groups are nearly twenty percent less likely than White women to be diagnosed at an early stage, when breast cancer can be most successfully treated. This supplemental information enables the Affiliate to focus specific attention on the Black/African- American and Hispanic/Latina communities of Erie County. Furthermore, it will inform further investigations in the health systems analysis, and the qualitative data report.

Table 2.9. Erie County, NY Breast Cancer Case Count by County, Race/Ethnicity, and Stage, 2006-2010 Stage at Diagnosis

County Race Local Regional Distant Unknown Total Erie White N=2,411 65% N=946 26% N=192 8% N=156 4% N=3,705

Erie Black/African- N=185 47% N=158 40% N=39 10% N=12 3% N=391 American Erie Other N=26 57% N=16 35% ^ ^ N=46 Erie Hispanic/Latina N=25 50% N=19 38% ^ ^ N=50 Source NYS Cancer Registry, 2014

Selection of Target Communities

Central Region Central Region Target Communities:  Black/African-American women  Monroe County, NY  Seneca County, NY

72 | Page Susan G. Komen® Upstate New York November 2017 These selections reflect the geographic diversity of the Central Region, which includes both urban and rural areas. The urban areas are largely comprised of women who historically experience health disparities in cancer management. In rural areas, of which Seneca County is representative, women experience barriers to comprehensive cancer care due to poverty, isolation and lack of transportation. In both urban and rural areas, many women lack knowledge about health care in general and basic breast health care in particular.

Black/African-American Women Black/African-American women are historically disadvantaged regarding health care in general and breast cancer care in particular (Hunt et al, 2013; Shavers & Brown, 2002). Both Monroe and Onondaga Counties have high percentages of Black/African-American women (17.2 percent and 12.5 percent, respectively). Black/African-American women in the Central Region have higher age-adjusted death rates and late-stage diagnosis rates (24.8/100,000 and 45.5/100,000, respectively) than the corresponding rates in the United States, New York State and Central Region (Table 2.1). Black/African-American women have long been a target for intervention by the Affiliate, and the need for serving this population of women persists.

Monroe County, NY Monroe County is home to one of the Central Region’s two largest urban centers, the city of Rochester. Monroe County has the highest percentage of Black/African-American and Hispanic/Latina women in the service area. Both of these populations are historically disadvantaged in access to high-quality breast cancer services. Monroe County has the highest age-adjusted death rate from breast cancer (24.8/100,000) in the Central Region, which is higher than the death rate in the Central Region as a whole and higher than that of New York State. In addition, Monroe County’s breast cancer incidence rate (139.7/100,000) is significantly higher than the Central Region as a whole. Monroe County also was assigned the “highest priority” based on predicted time to achieve HP2020 targets (13 years or longer) for both death rate and late-stage diagnosis rate. Though screening mammography participation rate in Monroe County is slightly lower than that of the Central Region as a whole or of New York State, other factors may account for the trends that placed Monroe County at high risk of not achieving HP2020 targets.

Seneca County, NY Seneca County has a high age-adjusted breast cancer death rate, according to the QDR and also according to New York State registry data. In addition, the QDR indicated a significant positive trend of a 21.4 percent annual increase in the death rate over time. The trend for late- stage diagnosis also demonstrates an increase of 3.7 percent per year. For these reasons, Seneca County was identified as a highest priority area based on achievement of HP2020 targets for both death rate and late-stage diagnosis rate.

Northeastern Region Northeastern Region Target Communities:  Albany and Schenectady Counties, NY  Franklin County, NY  Fulton County, NY  Montgomery County, NY  Saratoga County, NY

73 | Page Susan G. Komen® Upstate New York November 2017 Albany and Schenectady Counties, NY Albany County is the most populous county in the Northeastern Region, is in the southern part of the region and contains the largest city and the State Capital of New York State. The county’s female population is 157,324 women (Table 2.1). Like most of the region, the majority of the population is White, but the county does have the largest Black/African-American population at 14.3 percent (Table 2.4). This is important because of the higher death rates Black/African-American women experience from breast cancer when compared to other races (Komen, 2014). Sharing demographic similarities and proximity with Albany County, Schenectady County is also in the southern part of the region. It is the fourth most populous Northeastern Region county, with 79,271 women and contains the small city of Schenectady (Table 2.1). It is an urban county and the least rural, with only 8.2 percent of the population living in a rural area. It is also a relatively diverse county, with 11.7 percent Black/African- American, 4.3 percent Asian and Pacific Islander and 5.9 percent Hispanic/Latina populations— the second highest number of each of these populations in the region (Table 2.4).

Like Schenectady County, Albany County would be considered mainly urban; few county residents live in rural areas--the county has the second lowest percentage of residents living in rural areas in the region. Other socioeconomic factors of note in Albany County include the highest percentage of foreign born and the second highest percentage of linguistically isolated residents in the region at 8.9 percent and 2.2 percent, respectively. Even in this populous, urban county, 10.4 percent of residents are considered medically underserved and a slightly higher percentage of residents in Albany County live below the poverty level than the average for the region (Table 2.5). Socioeconomically, Schenectady County is notable for the second highest percentage of foreign born residents in the region. Its percentage of those living below the poverty level and with no insurance is just slightly above the Northeastern Region average (Table 2.5).

The 241-average annual new cases of breast cancer in Albany County are the highest in the Northeastern Region and the county has the second highest age-adjusted incidence rate in the region of 129.3 cases per 100,000 women. Importantly, the incident rate trend in Albany County is rising (+4.8 percent per year) and Albany County has a less favorable trend in breast cancer incidence rates. The age-adjusted death rate in the county of 21.0 deaths per 100,000 women was slightly above the region average and above the Healthy People 2020 goal of 20.6 deaths per 100,000 women. An estimated average of 42.0 people die of breast cancer each year in the county. The late-stage diagnosis age-adjusted rate of 46.0 per 100,000 women is the second highest in the region and is higher than the New York and United States average rates and the Healthy People 2020 goal of 41.0 age-adjusted cases per 100,000 women. This represents 84 annual average new cases of late-stage diagnosis. The late-stage diagnosis trend is also rising, rather than falling in this county (Table 2.1). In Schenectady County, the age-adjusted incidence rate of 129.2 cases per 100,000 women is falling, but is still above the United States, New York and region average rates. The death rate trend is also falling in this county, but the death rate does not yet meet the Healthy People 2020 age-adjusted goal rate of 20.6 cases per 100,000 women. The late-stage breast cancer incidence trend is also rising and at 43.3 cases per 100,000 women is above the Healthy People 2020 goal rate of 41.0 per 100,000 women (Table 2.1).

74 | Page Susan G. Komen® Upstate New York November 2017 The predicted time for Albany County to achieve the Healthy People 2020 death rate target is one year, for Schenectady County is four years and the predicted time to achieve the late-stage incidence target is 13 years or longer for both counties, which makes this community a priority for the Affiliate (Table 2.7). The Health Systems Analysis in the next section will examine demographic and socioeconomic factors found in this community, especially the relatively high diversity of its population, and how that might impact access to, and utilization of, breast health services in this community. This analysis is important because Black/African-American women are almost twice as likely to delay starting chemotherapy or radiation as White women. Black/African-American and Hispanic/Latina women are more likely to develop triple negative breast cancer (TNBC), an aggressive subtype of breast cancer associated with shorter survival. Twice as many Black/African-American women younger than 40 are diagnosed with breast cancer as White women of the same age, and they also tend to have higher levels of hormones like estrogen, which may contribute to their increased risk of premenopausal breast cancer (Komen 2014).

Franklin County, NY Franklin County is in the northern most part of the region and borders Canada. Only three counties in the region have a smaller population and the total county female population is 23,277 (Table 2.1). Most of the population is White, but the county has a substantially larger American Indian female population (8.6 percent) than the Northeastern Region, many who live on the region’s only reservation (territory), the Akwesasne (or St. Regis Mohawk) Tribal Land (Table 2.4). The 2010 US Census counted a population on the Tribal Land of 3,288 American Indians. In the past, breast cancer in American Indians was rare. Unfortunately, the last two decades have seen large increases in both incidence and death rates for this group of women. Incidence and death rates are still lower than among White or Black/African-American women, and rates do vary according to where in the country American Indian women live (Komen, 2014).

Franklin County has a substantially high percentage of residents with incomes below 250 percent of the poverty level (37.4 percent) and the second highest percentage of residents with less than a high school education in the Northeastern Region (16.7 percent) (Table 2.5). The highest percentage of people in the region with no health insurance (aged 40-64) live in this county (12.8 percent) and a relatively high percentage of the population reside in a medically underserved area (18.0 percent) and rural areas (62.7 percent) (Table 2.5).

The age-adjusted incidence rate per 100,000 women is relatively low in Franklin County—the second lowest in the Northeastern Region, but the annual percent change is rising (+6.6 percent)—the second highest increase in the region. The age-adjusted death rate, although below the United States and New York average rates, is still above the Healthy People 2020 target rate of 20.6 deaths per 100,000 women. Another breast cancer statistic to note for this county is the rising trend or annual percent change in late- stage diagnosis, which at +9.9 percent is the second highest percent change in the region (Table 2.1).

As the previous section indicates, the predicted time to achieve the death rate target for this county is two years. The predicted time to achieve the late-stage incidence target is 13 years or longer (Table 2.7). Due to the high American Indian population, low education levels, and relatively high percentage of uninsured and residents that reside in medically underserved and

75 | Page Susan G. Komen® Upstate New York November 2017 in rural areas this county is a high priority of the Affiliate. The health systems analysis will look at these factors in relation to access to services and also examine the low breast cancer screening levels in this county (which are often negatively impacted by socioeconomic and geographic factors).

Fulton County, NY Fulton County has a relatively small population of 28,042 women and is predominately White (97.0 percent) (Tables 2.1 and 2.4). The county is in the south-western part of the Northeastern Region and contains the small cities of Johnstown and Gloversville. The county has a substantially high percentage of residents with less than high school education—the third highest in the region; a high percentage living below the poverty level—the second highest in the region; and a high percentage of unemployment—the second highest in the region. The percentage of those living in rural areas and with no insurance is also higher than the Affiliate service area average (Table 2.5). Women who do not have health insurance are almost four times as likely to be diagnosed with advanced breast cancer compared to women with health insurance (Komen, 2014).

The age-adjusted incidence rate in Fulton County is just slightly above the United States average and the trend is very slightly rising (+1.0 percent). The age-adjusted death rate per 100,000 women is below the New York State and United States average rate, but does not yet meet the Healthy People 2020 goal rate of 20.6 cases per 100,000 women. Of special concern is the age-adjusted late-stage diagnosis rate of 50.8 cases per 100,000 women the second highest in the Northeastern Region and well above the United States average, New York State average and Healthy People 2020 goal rates. The late-stage trend in Fulton County is also slightly increasing at 2.3 percent (Table 2.1).

The predicted time to achieve the death rate target for Fulton County is two years and to achieve the late-stage incidence target is 13 years or longer (Table 2.7). These dates, combined with the economic issues in this county and the high late-stage diagnosis rate, make this county a priority in the service area. The issues and rates impact on breast health will be detailed in the health systems analysis.

Montgomery County, NY Montgomery County has a small population—25,631 women and one small city of Amsterdam. It has the highest percentage of residents with less than a high school education, the third highest percentage of residents living below the poverty level and it has the highest unemployment level in the Northeastern Region (Table 2.5). In terms of access to medical care, a higher than region average percentage of residents have no health insurance (10.8 percent) and the percentage of residents residing in medically underserved areas is the second highest in the region—27.3 percent (Table 2.5).

This county is unique in the Northeastern Region for its substantially large Hispanic/Latina female population of 11.2 percent (Table 2.4). It also has the largest percentage of linguistically isolated residents in the region at 3.9 percent (Table 2.5). Importantly, studies have shown Hispanic/Latina women have longer follow-up times after an abnormal mammogram than White women and are less likely to complete follow-up care and diagnostic services. Black/African-

76 | Page Susan G. Komen® Upstate New York November 2017 American and Hispanic/Latina women are more likely than White women to be diagnosed with more advanced stages of breast cancer (Komen, 2014).

While Montgomery County has a relatively low incidence rate per 100,000 women, the annual incidence rate trend is rising at +5.9 percent. The age-adjusted death rate per 100,000 women for the county (20.9) is just slightly above the Healthy People goal rate of 20.6 cases per 100,000 women. Of particular concern with late-stage diagnosis in the county is the rising late- stage rate trend—at +11.0 percent the second highest in the region (Table 2.1).

The predicted time to achieve the death rate target in Montgomery County is one year and to achieve the late-stage incidence target is 13 years or longer (Table 2.7). Montgomery County was chosen as a priority for the Affiliate due to the county’s breast cancer statistics, unique population demographics, and identification as having medically underserved areas and low income levels—all of which can impact women’s access to affordable breast health care and will be looked at in the next section. The cultural sensitivity of health care services will also be examined in the health system analysis and with qualitative data collection.

Saratoga County, NY Saratoga County is located in the southern part of the Northeastern Region and has a female population of 110,336 women, making it the second most populous county in the region (Table 2.1). It is also predominantly White, with 95.6 percent of the population identified as White. It has the smallest percentage of women aged 65 and older of all of the fifteen Northeastern Region counties (Table 2.4). It contains the small cities of Saratoga Springs and Mechanicville; and while mostly suburban, contains some very rural towns as well, which might impact access to breast health services. In terms of socioeconomic factors, Saratoga County has the highest level of educational attainment, the lowest unemployment level, the lowest percentage of those with no health insurance and the lowest number of those living below the poverty level of all the counties in the Northeastern Region (Table 2.5).

The annual average number of new cases of breast cancer in this county is 179, the second highest number in the Northeastern Region. The age-adjusted incidence rate is the highest in the Northeastern Region at 135.4 cases per 100,000 women, much higher than the United States average rate of 122.1 per 100,000 women and also higher than New York State’s average of 127.7 cases per 100,000 women. The incidence trend (annual percent change) is also slightly increasing in this county (Table 2.1).

The average annual deaths are 33—the second highest in the region. The age-adjusted death rate is the second highest in the Northeastern Region at 24.6 cases per 100,000 women, above both the New York State and United States rates and most importantly above the Healthy People 2020 goal of 20.6 cases per 100,000 women. Fortunately, as is the case with all of the counties in the region, the trend for deaths is decreasing. In terms of late-stage diagnosis, 58 of the average annual 179 new cases of breast cancer are diagnosed at a late-stage in Saratoga County. The age-adjusted late-stage diagnosis rate in the county of 44.7 cases per 100,000 women is above the New York State and United States average rates and the Healthy People 2020 and 2012-2017 New York State Comprehensive Cancer Control Plan goals of 41.0 per 100,000 women and 41.7 per 100,000 women, respectively. Of concern, this late-stage diagnosis trend also seems to be increasing, with a +3.9 percent annual change (Table 2.1).

77 | Page Susan G. Komen® Upstate New York November 2017

As the previous section indicates, the predicted time to achieve the Healthy People 2020 death rate target is eight years and the predicted time for Saratoga County to achieve the late-stage incidence target is 13 years or longer, making this county a high priority for the Affiliate (Table 2.7). The Affiliate will explore gaps in the continuum of care that could lead to these late achievement dates in the health systems analysis.

Twin Tiers Region Twin Tiers Region Target Communities:  Tioga County, NY  Bradford County, PA

Tioga County, NY Like much of the Twin Tiers Region, Tioga County, NY is a predominantly rural region (65.7 percent) with a population of 51,125 spread across 523 square miles. There are eight municipalities in Tioga County, NY with populations greater than 1,500. The largest town and county seat, Owego, NY, has a population of 19,883. The total female population of Tioga County, NY is 25,913, which makes Tioga County, NY the sixth smallest county in the Twin Tiers Region.

Overwhelmingly non-Hispanic (98.6 percent), White (97.8 percent), native-born (98.3 percent) and not linguistically-isolated (99.7 percent), Tioga County, NY has a slightly lower percentage of non-high-school graduates (9.5 percent) than the Twin Tiers Region as a whole (11.4 percent), New York as a whole (15.4 percent), and the US as a whole (14.6 percent). A slightly lower percentage (29.2 percent) of its residents ages 40-64 have income below the 250 percent poverty line than the Twin Tiers Region (33.8 percent), the State of New York (32.3 percent) and the US as a whole (33.3 percent). A slightly lower percentage of its population ages 40-64 does not have health insurance (9.0 percent), compared with the Twin Tiers Region as a whole (10.9 percent), the State of New York (12.1 percent), and the US as a whole (16.6 percent).

The educational attainment, economic circumstances and general availability of health insurance would seem to indicate that breast health would be better in Tioga County, NY than in the Twin Tiers Region as a whole, the State of New York, and the US as a whole. However, the proportion of women ages 50-64 in Tioga County, NY who self-reported obtaining a mammogram within the last two years (52.5 percent) was much lower than that of the Twin Tiers Region as a whole (75.3 percent), that of the State of New York (79.7 percent) and that of the US as a whole (77.5 percent). One potential reason for this anomaly is that no major health care system is located in Tioga County, NY. Women in Tioga County, NY travel to the Robert Packer Hospital of the Guthrie Health Care System, located in Bradford County, PA, Lourdes Hospital or United Health Services in Broome County, NY, Cayuga Medical Center in Tompkins County, NY, or Arnot Health in Chemung County, NY for breast health care. A more in-depth analysis of the availability of breast health services for Tioga County, NY women and the barriers to accessing those services will be provided in the health systems review section of this report.

The rate of late-stage breast cancer diagnosis in Tioga County, NY, 37.4 age-adjusted cases per 100,000, was lower than in the Twin Tiers Region as a whole, 41.1 per 100,000, the State of

78 | Page Susan G. Komen® Upstate New York November 2017 New York, 44.6 per 100,000, and the US as a whole, 43.8 per 100,000. Additionally, Tioga County, NY currently exceeds the Healthy People late-stage breast cancer diagnosis rate of 41.0 cases per 100,000. However, the rate is trending upwards in Tioga County, NY, 10.8 percent, even as the trends in the Twin Tiers Region as a whole, the State of New York and the US as a whole are falling slightly, -2.7 percent, -0.4 percent and -1.2 percent, respectively. Moreover, Tioga County, NY is the only county in the Twin Tiers Region whose rate of late- stage breast cancer diagnosis is trending upwards over 10 percent.

Due to this large percentage upward trend in the rate of late-stage breast cancer diagnosis, Tioga County, NY is not expected to meet the Healthy People 2020 late-stage diagnosis goal of 41.0 per 100,000 for 13 years or more. The reasons for this shortcoming, and potential solutions to overcome it, will be discussed in more depth later in the report.

Bradford County, PA Like much of the Twin Tiers Region, Bradford County, PA is a predominantly rural region (72.2 percent) with a population of 62,622 spread across 1,161 square miles. There are eight municipalities in Bradford County, PA, with populations of 1,500 or more, including the Sayre/Athens area at the far north of the county. None of these municipalities has a population greater than 10,000. The total female population of Bradford County, PA is 31,772, which makes Bradford County the fifth smallest county in the Twin Tiers Region.

Bradford County is overwhelmingly non-Hispanic (98.8 percent), White (98.1 percent), native- born (98.6 percent) and not linguistically-isolated (99.4 percent). It has a slightly higher percentage of non-high-school graduates (14.5 percent) than the Twin Tiers Region as a whole (11.4 percent) and Pennsylvania as a whole (12.1 percent), but its percentage is similar to that of the US as a whole (14.6 percent). A slightly higher percentage (37.1 percent) of its residents ages 40-64 have income below the 250 percent poverty line than the Twin Tiers Region (33.8 percent), the State of Pennsylvania (30.3 percent) and the US as a whole (33.3 percent).

A slightly higher percentage of its population ages 40-64 does not have health insurance (12.5 percent), compared with the Twin Tiers Region as a whole (10.9 percent) and the State of Pennsylvania (11.0 percent), but this percentage is lower than that of the US as a whole (16.6 percent). The Robert Packer Hospital, part of the Guthrie Health Care System, located in Sayre, PA, is the predominant health care system in the county, although women in southern Bradford County also can receive breast health care at Memorial Hospital in Towanda, PA, or Troy Community Hospital in Troy, PA, and some women travel to Arnot Health in Chemung County, NY for breast health care. A more in-depth analysis of the availability of breast health services for Bradford County women and the barriers to accessing those services will be provided in the health systems review section of this report.

The proportion of women ages 50-64 in Bradford County who self-reported obtaining a mammogram within the last two years (74.1 percent) was slightly lower than that of the Twin Tiers Region as a whole (75.3 percent), lower than that of the State of Pennsylvania (77.8 percent) and lower than that of the US as a whole (77.5 percent). Of note, the rate of late-stage breast cancer diagnosis in Bradford County, 49.4 age-adjusted cases per 100,000, was higher than in the Twin Tiers Region as a whole, 41.1 per 100,000, the State of Pennsylvania, 45.4 per 100,000, and the US as a whole, 43.8 per 100,000. Of concern, the rate is trending slightly

79 | Page Susan G. Komen® Upstate New York November 2017 upwards, 1.8 percent on average per year, even as the trends in the Twin Tiers Region as a whole, the State of Pennsylvania and the US as a whole are falling slightly, -2.7 percent, -0.4 percent and -1.2 percent, respectively.

Of greatest significance, Bradford County is not expected to meet the Healthy People 2020 late- stage diagnosis goal of 41.0 per 100,000. The reasons for this shortcoming, and potential solutions to overcome it, will be discussed in more depth later in the report.

Western Region Western Region Target Communities:  Allegany County, NY  Cattaraugus County, NY  Erie County, NY  Wyoming County, NY

Allegany County, NY Allegany was selected as a target community because of the proximity to and collaborations with Cattaraugus County. The two counties have combined New York State Cancer Services Programs, as well as similar demographics. Allegany County is situated directly east of Cattaraugus County in the rural Southern Tier of the Western Region. The county has a total population of 48,946, and 49.5 percent of the women living in Allegany are over the age of forty. More than 38 percent of Allegany County residents fall below 250 percent of the poverty line and 12.1 percent have an education level below high school.

Allegany County falls into the medium-high priority area for Healthy People 2020 breast cancer targets. Based on current trends, it is predicted that Allegany County will take more than two years to achieve death rate targets of 41 cases per 100,000 people and thirteen years or more to achieve late stage incidence rates of 20.6 cases per 100,000 people.

In the health systems analysis, there will be an investigation into the availability of breast cancer services and programming in Allegany County. In rural areas, the distance between breast cancer screening and treatment providers is a major barrier, often compounded by financial limitations faced by low-income residents. The health systems analysis will delve into the services available for low-income residents. The availability of the mobile mammography unit will also be investigated as a possible resource for those who face transportation barriers.

Cattaraugus County, NY Cattaraugus County, located in the Southern Tier of the Western Region is defined as a rural and medically underserved county. The annual average female population is 40,877 and 52.3 percent of those women are over the age of forty. White women make up 93.9 percent of the population in Cattaraugus County. The second largest percentage of Native Americans in New York State also lives in Cattaraugus County (Cancer Control P.L.A.N.E.T), as well as a significant Amish population. From a socioeconomic standpoint, 38.9 percent of Cattaraugus County residents fall below 250 percent of the poverty line and 12.6 percent did not graduate high school.

80 | Page Susan G. Komen® Upstate New York November 2017 Cattaraugus County has been chosen as a target community due to the increasing trend of 3.9 percent for breast cancer incidence and the likelihood that it will take eleven years or more to improve late-stage diagnosis rates. Cattaraugus County falls into the medium priority guidelines for Healthy People 2020 objectives.

In the health systems analysis, there will be an investigation into the availability of breast cancer services and programming in Cattaraugus County. In rural areas, the distance between breast cancer screening and treatment providers is a major barrier, often compounded by financial limitations faced by low-income residents. The health systems analysis will delve into the services available for low-income residents. The availability of the mobile mammography unit will also be investigated as a possible resource for those who face transportation barriers.

Erie County, NY Erie County is comprised largely of the city of Buffalo and surrounding suburbs. The county’s population of 919,040 is the largest of the Western Region. Just over 261,000 live in the city of Buffalo. As a whole, Erie County represents the most diverse population in the Western Region. Of these women, 14.8 percent are Black/African-American, which is more than double even the second most populated county in the region. This is significant due to the high death rates Black/African-American women experience from breast cancer when compared to other races. As illustrated through the additional data collected from the New York State Cancer Registry, Black/African-American women in Erie County are significantly less likely to be diagnosed at an early stage than White women. The same is true for Hispanic/Latina women, who account for 4.6 percent of the population in Erie County.

In general, the minority population in Erie County is higher than the rest of the region. As such, the potential for social and economic barriers to breast cancer screening and treatment are higher. Those, compounded with the poverty rate of 30.7 percent and 22.9 percent of residents living in medically underserved areas, can make access to resources incredibly challenging for many residents.

While there are many factors that contribute to the breast cancer burden in Erie County, it has been identified as a high priority county due to the amount of intervention time needed to achieve the HP2020 targets. In order to best understand what interventions might help to improve the trends in death rates and late stage diagnoses, the health systems analysis section of this report will investigate what types of breast cancer services are available and to what communities. Preliminary research has shown that multiple mammography sites have moved from the City of Buffalo to surrounding suburbs. This makes access an issue for women in the city who are not able to access services that are located further from their neighborhoods. It is also imperative to delve into the services that are available to help combat the social and cultural barriers that prevent many minority women from seeking or successfully accessing breast cancer care. A mobile mammography unit is also new to the community. The health systems analysis will research what populations and neighborhoods the unit reaches, as well as future plans to reach additional counties in the region.

Wyoming County, NY Based on trend data, Wyoming County is unlikely to achieve HP2020 objectives for breast cancer. Table 2.7 indicates that Wyoming will take thirteen years or longer to achieve the goal of

81 | Page Susan G. Komen® Upstate New York November 2017 20.6 deaths per 100,000. Table 2.7 indicates it will take thirteen years or longer to achieve an incidence rate of 41 cases per 100,000 late stage diagnoses.

Wyoming County is located in the Southern Tier of the Western Region. The demographic makeup of this county’s female residents is primarily White and over 40 years of age. With a total population of just under 42,000 people (US Census Bureau – 2010), and just over 19,000 females, Wyoming County is the least populated county in the Western Region.

Socioeconomic characteristics of the region indicate a potential concern about women’s access to breast health care. Just over 31 percent of residents fall below 250 percent of the poverty line. The county is defined as rural and medically underserved, indicating that both income and physical distance from screening and treatment locations are barriers to breast health services for the women of Wyoming County.

The health systems analysis component of this report will take a deeper look at the available breast health services. Due the region’s rural nature and designation as medically underserved, it is vital to gain a clear understanding of how breast health services are currently accessed in the region. Additional research will be necessary to better understand Wyoming County’s community partnerships to see how Komen Upstate New York may be able to build a stronger relationship and build collaborations in that area

82 | Page Susan G. Komen® Upstate New York November 2017 Health Systems and Public Policy Analysis

Health Systems Analysis Data Sources

Data for the health systems analysis were derived from a number of sources. Information for the health systems analysis template was obtained from:  Mammography facilities currently certified by the Federal Food and Drug Administration (FDA), found at: http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfMQSA/mqsa.cfm  Local Health Departments listed by the National Association of County and City Health Officials, found at: http://www.naccho.org/about/lhd/  Community Health Centers listed by the United States Department of Health and Human Services, found at: http://findahealthcenter.hrsa.gov/Search_Hcc.aspx  Free Clinics listed by the National Association of Free and Charitable Clinics, found at: http://www.nafcclinics.org/clinics/search  American College of Surgeons Commission on Cancer accredited list, found at: http://datalinks.facs.org/cpm/CPMApprovedHospitals_Search.htm  American College of Surgeons National Accreditation Program for Breast Centers, found at: http://napbc-breast.org/resources/find.html  National Cancer Institute (NCI) Designated Cancer Centers list, found at: http://www.cancer.gov/researchandfunding/extramural/cancercenters/find-a-cancer- center  The New York State Comprehensive Cancer Control Plan, found at: https://www.nyscancerconsortium.org/dcouments/NYSCompCancerPlan2012-2017- FINAL_000.pdf  National College of Radiology (ACR) Breast Imaging Centers of Excellence, found at: http://www.acr.org/Quality-Safety/Accreditation/Accredited-Facility-Search  Hospitals registered with Medicare, found at: https://data.medicare.gov/Hospital- Compare/Hospital-General-Information/v287-28n3

In addition to the above resources, current and past Affiliate community grantees were also delineated for this health systems analysis and an online internet search was done of cancer organizations in each of the target communities. For each of the facilities found, the organization’s county, organization type, name, address, city, state, zip code and phone number was recorded. If a contact was known at the facility, their name and email was also noted. The services (screening, diagnosis, treatment, support/survivorship) directly provided by the facility along the breast cancer continuum of care (described below) was then determined through the internet sources above or a phone call to the facility. Finally, quality of care indicators were determined using the above sources for any facilities in the target communities designated as a NCI Cancer Center, an ACR Breast Imaging Center of Excellence, an American College of Surgeons Accredited Program for Breast Centers or was American College of Surgeons Commission on Cancer Accredited.

For each target community, these facilities were listed and examined to determine how many and what types of services along the breast cancer continuum of care existed in that target community and each facility was checked for quality of care indicators. Through mapping the

83 | Page Susan G. Komen® Upstate New York November 2017 facilities, the Affiliate determined how geographically dispersed they were or if the service was even provided in the target community.

Information for the public policy analysis overview was obtained from various web and peer- reviewed sources that are listed in the reference section of this document. Data were collected by the Community Profile Teams, and findings were reviewed and discussed in detail, gaps and barriers in services were identified, and questions were raised which will be addressed in the next phase of the Community Profile.

Health Systems Overview

The breast cancer continuum of care (Figure 3.1) is a model that shows how a woman typically moves through the health care system for breast care—through screening, diagnosis, treatment and follow-up. A woman would ideally move through the continuum of care quickly and seamlessly, receiving timely, quality care in order to have the best outcomes. Education can play an important role throughout the entire continuum of care.

While a woman may enter the continuum at any point, ideally, a woman would enter the continuum of care by getting screened for breast cancer – with a clinical breast exam or a screening mammogram. If the screening test results are normal, she would loop back into follow-up care, where she would get another Figure 3.1. Breast cancer continuum screening exam at the recommended interval. of care Education plays a role in both providing education to encourage women to get screened and reinforcing the need to continue to get screened routinely thereafter.

If a screening exam resulted in abnormal results, diagnostic tests would be needed, possibly several, to determine if the abnormal finding is in fact breast cancer. These tests might include a diagnostic mammogram, breast ultrasound or biopsy. If the tests were negative (or benign) and breast cancer was not found, she would go into the follow-up loop, and return for screening at the recommended interval. The recommended intervals may range from 3 to 6 months for some women to 12 months for most women. Education plays a role in communicating the importance of proactively getting test results, keeping follow-up appointments and understanding what it all means. Education can empower a woman and help manage anxiety and fear.

If breast cancer is diagnosed, she would proceed to treatment. Education can cover such topics as treatment options, how a pathology report determines the best options for treatment, understanding side effects and how to manage them, and helping to formulate questions a woman may have for her providers.

84 | Page Susan G. Komen® Upstate New York November 2017 For some breast cancer patients, treatment may last a few months and for others, it may last years. While the continuum of care model shows that follow-up and survivorship come after treatment ends, they actually may occur at the same time. Follow-up and survivorship may include things like navigating insurance issues, locating financial assistance, symptom management, such as pain, fatigue, sexual issues, bone health, etc. Education may address topics such as making healthy lifestyle choices, long term effects of treatment, managing side effects, the importance of follow-up appointments and communication with their providers. Most women will return to screening at a recommended interval after treatment ends, or for some, during treatment (such as those taking long term hormone therapy).

There are often delays in moving from one point of the continuum to another – at the point of follow-up of abnormal screening exam results, starting treatment, and completing treatment – that can all contribute to poorer outcomes. There are also many reasons why a woman does not enter or continue in the breast cancer continuum of care. These barriers can include things such as lack of transportation, system issues including long waits for appointments and inconvenient clinic hours, language barriers, fear, and lack of information – or the wrong information (myths and misconceptions). Education can address some of these barriers and help a woman progress through the continuum of care more quickly.

Health System Strengths and Weaknesses in Target Communities Central Region Both Monroe and Onondaga Counties are home to academic medical centers that have high- quality cancer care. In Syracuse, SUNY Upstate Medical University opened a new cancer care center in September 2014. Rochester boasts more than 50 providers of cancer care, some of which hold certification from prestigious medical boards.

Monroe County (Figure 3.2) Strengths:  Number and quality of health and cancer care providers  A strong Cancer Services Program that provides numerous “days of screening”, holds frequent innovative events to bring underserved women into the continuum of care, and collaborates with organizations aimed at reducing racial disparities in health outcomes.  New screening mammography offered at the Holland St. Anthony Jordan Clinic, providing the only neighborhood screening in Rochester’s “crescent of poverty” area.

Weaknesses:  Lack of breast health services in proximity to the city’s poor Black/African-American population.  Rochester’s recent consolidation into just two health/hospital systems creates uncertainty about subsequent effects on access for inner city poor women of color.

Onondaga County (Figure 3.3) Strengths:  Number and quality of health and cancer care providers, including new Cancer Center at Upstate University Hospital  Concentration of hospital/health services in the center of Syracuse results in state-of- the-art mammography technology within walking distance for some of the county’s poor Black/African-American population. 85 | Page Susan G. Komen® Upstate New York November 2017 Weaknesses:  An established free clinic that serves the lower income “near west side” still uses analog technology for mammograms, and is described as resource-poor, crowded, and referring fewer women. A mobile mammography unit that formerly served the Onondaga Nation reservation has not been replaced.  We lack a clear understanding of breast health issues among recent refuges from diverse cultures, a growing population in Syracuse and other cities in the Central Region.  Onondaga County’s growing patchwork of breast cancer support services may now need coordination and leadership to optimize reach and utilization.

Despite the many high-quality clinics and providers in these counties, elevated late-stage diagnosis and death rates among Black/African-American women presented in the quantitative data (Quantitative Data Report, Table 2.1) indicate that this population may not be receiving the best preventive and treatment care. This may be due to low health literacy/knowledge, cultural issues, geographic and other access barriers and a distrust of a health care system in which providers of color are few and in which English is the predominant language. The Affiliate needs to determine where in the continuum of care the system fails these communities. This can be accomplished by exploring the experiences of urban Black/African-American women to identify barriers related to breast cancer care within their communities.

Seneca County, New York Seneca County has a small population (35,000) and limited health services (Figure 3.4). Most of Seneca County lies between the two largest Finger Lakes in Central New York State; the northernmost extent of the county is approximately midway between Syracuse and Rochester. Seneca County is served by the CSP of Ontario, Seneca, and Yates Counties. The CSP is located in and coordinated from Clifton Springs Hospital in Ontario County, with a case manager for each county. Seneca County has no hospital and just one facility for screening mammography, situated near its northern end (Lifecare Medical Associates in Seneca Falls). Recently a federally qualified health center opened in the southern part of the county, providing health care access to the poor rural population in this area (Ovid Community Health).

Strengths:  Above mentioned health system assets.  Access to excellent medical services in large nearby cities (given self-transportation).  Excellent collaboration among providers and the CSP across the three-county area, as recently described by CSP personnel (see Qualitative Section).

Weaknesses:  Limited health facilities due to the sparse rural population. This necessitates transportation availability.  The available health system may not be adequately utilized by southern Seneca County’s growing Amish and Mennonite communities (see Qualitative Section).

Given the paucity of services located in this rural county, it is likely that women must travel long distances to receive breast health services. The Affiliate needs to explore where, when and how women access and receive services throughout the continuum of care in this county. It is

86 | Page Susan G. Komen® Upstate New York November 2017 likely that care for women in Seneca County is provided in neighboring counties and that this is a common experience for rural women throughout the Central Region.

Northeastern Region Albany and Schenectady Counties In the Albany/Schenectady Counties target community, there are twelve breast cancer screening mammography and diagnostic facilities (Figure 3.5). Four of these facilities are also ACR Breast Imaging Centers of Excellence. Two community health centers (one in each county) and a free clinic, along with other primary care providers, also provide screening services through clinical breast exams. Six hospitals are located in the target community and three are accredited by the American College of Surgeons Commission on Cancer. These hospitals provide treatment services along the continuum of care, as do three offices of New York Oncology Hematology located in this target community. The hospitals along with numerous nonprofits provide support/survivorship services in the community. Compared to the other target communities in the Northeastern Region, the two counties making up this target community are the region’s least rural; most people live in the population centers close to breast health and breast cancer services.

Franklin County, NY Franklin County has three breast cancer screening mammography and diagnostic facilities in a county which covers a very wide geographic area of 1,697 square miles (Figure 3.6). The breast cancer and breast health services that do exist are concentrated in Malone in the extreme northern part of the county and in Saranac and Tupper Lakes in the extreme southern part of the county--many women in the county are geographically isolated from services. Two hospitals are located in this target community and they each provide some level of treatment and support/survivorship services--few support/survivorship services are available outside of these facilities.

Fulton County, NY Fulton County has two breast cancer screening mammography and diagnostic facilities (Figure 3.7). One hospital is located in this target community. The existing services are in the southeastern part of the county, leaving those women in other areas far from any services. The hospital in the target community does provide some cancer support/survivorship services, but those seeking breast cancer treatment and support/survivorship services beyond screening would have to go to neighboring counties.

Montgomery County, NY Montgomery County has one hospital which provides breast cancer screening mammography and diagnostic services along with treatment and support/survivorship services (Figure 3.8). Treatment services are also provided by New York Oncology/Hematology located in Amsterdam. Few other providers exist in this target community to provide services along the continuum of care. All the breast cancer and breast health service providers in this target community are located in one city—Amsterdam.

Saratoga County, NY In Saratoga County, eight screening mammography and diagnostic facilities exist--primarily concentrated in the population centers of Saratoga Springs and Clifton Park (Figure 3.9). One

87 | Page Susan G. Komen® Upstate New York November 2017 of these facilities is an American College of Radiology Breast Imaging Center of Excellence. Clifton Park is in the extreme southern part of the county and while Saratoga Springs is somewhat centrally located in the county, women in the more rural western and northwestern parts of the county have few if any services in close proximity and are geographically isolated from the county’s population centers. Breast cancer treatment in the target community is provided through New York Oncology Hematology (NYOH) and by the county’s one hospital, Saratoga Hospital, which provides services across the entire continuum of care and is accredited by the American College of Surgeons Commission on Cancer. Three nonprofit organizations are located specifically in this target community to provide breast health or breast cancer support/survivorship services; this number is relatively small given the population of the target community (it is the second most populous county in the Northeastern Region).

Twin Tiers Region Tioga County, NY According to the Tioga County Community Health Assessment, 2014-2017, female breast cancer was the “leading type of cancer” for Tioga County in the period 2007-2009. With no hospitals located within Tioga County, NY, and only limited screening services, patients requiring diagnostic services or, with one exception, treatment, must travel outside the county. Additionally, there are no programs for survivors available in the county.

Two hospitals in neighboring Broome County, NY, Lourdes Hospital in Binghamton (“Lourdes”) and the UHS Breast Center in Vestal (“UHS”), and one in Bradford County, PA, Robert Packer Hospital, part of the Guthrie health network (“Robert Packer”), provide these further services and treatment (Figure 3.10). Patients requiring these services must travel to these locations in most instances. Only limited public transit options are available.

The screening and treatment available within Tioga County, NY are as follows:  Lourdes Mission in Motion provides mobile digital mammography in Tioga County on average 24-36 days per year. One Wednesday each month, the van is parked at a church in Owego, NY, where on average 10-14 women per visit receive mammograms and CBEs. Mission in Motion also travels to the Owego Family Practice several times per year, visits the Richford Family Practice in the northern part of the county a few times per year, attends some community events, is at the Social Services Building in Owego one time per year, travels to a local grocery store parking lot a few times per year, and offers its services at one or two workplaces once or twice per year. With the exception of the Wednesday church visits, the service consists of mammograms only. On average, 10 women per van visit receive mammograms at locations other than the church. Lourdes Mission in Motion is a member of the Cancer Services Program, a New York State funded program that provides no cost/low cost mammograms, pelvic exams and pap tests.  The Guthrie Owego Clinic offers screening mammography in Tioga County, NY. In addition, an oncologist from Robert Packer travels to the Owego clinic one day per week to offer chemotherapy for cancer patients. The Guthrie Owego Clinic does not participate in the Cancer Services Program, but it does accept Medicaid patients.

Lourdes Mission in Motion works with an Affiliate grantee, Binghamton YWCA ENCOREplus Breast and Cervical Outreach Program, to reach and schedule mammograms for uninsured 88 | Page Susan G. Komen® Upstate New York November 2017 women. The ENCOREplus program provides breast/cervical health outreach, education and advocacy for all women. ENCOREplus also assists uninsured women in accessing free, age appropriate, annual mammograms and PAP screenings through the Breast and Cervical Treatment Act provided by the New York State Department of Health and Federal Center of Disease Control. Among other outreach methods, ENCOREplus provides breast health information at area Food Pantries.

The New York State Cancer Services Program website lists a number of community-based breast cancer support and wellness programs by county. Per the website, these grassroots, freestanding organizations provide a range of supportive services for individuals diagnosed with breast cancer. The National LGBT Cancer Network, located in New York City, is listed as a community-based breast cancer support program for Tioga County patients.

Legal Services of Central New York, Inc., located in Syracuse, NY provides legal and supportive services to patients and their families who are affected by breast cancer in Tioga County and is also listed as a support service on the New York State Cancer Services Program website. Traci’s Hope, located in Tioga County, NY, is a not-for-profit organization dedicated to helping people who have been diagnosed with breast cancer in Tioga and Broome Counties, NY and Bradford and Susquehanna Counties, PA. Traci’s Hope provides monetary support, but does not provide direct medical services. According to the organization’s website, Traci’s Hope distributed $58,000 to eligible people through 2010. Traci's Hope provides funding for medical costs and supplies related to a breast cancer diagnosis, utilities, housecleaning, rent/mortgage, transportation, childcare and other needs upon request to anyone in its service region who has been diagnosed with breast cancer (including recurrence or metastasis), is in the midst of breast cancer treatment (surgery, radiation, chemotherapy), or it has been less than a year since the completion of treatment. Breast cancer patients must apply for the funding, which is limited to $1,000 per year and $2,500 over a lifetime.

The Rural Health Network of South Central New York, located in Broome County, NY, works to advance the health and well-being of rural people and communities in the South Central New York counties of Broome, Delaware and Tioga. Mobility Management of South Central New York (“MMSCNY”) is an ongoing collaboration between the Rural Health Network and partner organizations in Broome and Tioga Counties. Together, they seek to improve transportation access and coordination in the Greater Southern Tier Region, with particular regard to the area's rural communities. Connection to Care, a new initiative of MMSCNY, helps rural residents overcome transportation barriers. Connection to Care will help those in need of transportation to non-emergency medical appointments or to pick up prescription medication or medical supplies. To access Connection to Care resources, a patient, family member or friend can call the GetThere Call Center. GetThere Mobility and Transportation Advocates will work with the caller to identify the lowest cost transportation option that is appropriate for the individual in need.

The American Cancer Society provides its Road to Recovery Program in Tioga County, NY. Cancer patients who are undergoing active treatment, are ambulatory and require transportation to an appointment can telephone a week in advance to schedule a ride from a volunteer, if one is available. The American Cancer Society's ABCD mentorship program also is available for patients in Tioga County, but is, again, volunteer-dependent.

89 | Page Susan G. Komen® Upstate New York November 2017

In addition to the lack of breast care facilities in Tioga County, NY, women often do not realize that they do not need a referral from their general practitioners to schedule a mammogram; mammograms are the only self-referral test in New York State.

Finally, with no hospitals and very little patient navigation available generally in Tioga County, NY, both current patients and survivors must travel outside Tioga County to find support groups. Robert Packer offers a monthly general women’s cancer survivor group in Bradford County, PA. Lourdes in Binghamton, NY and the UHS Breast Center in Vestal, NY both offer monthly breast cancer support groups.

Bradford County, PA In contrast to Tioga County, NY, screening mammography is available at four distinct Bradford County, PA locations (Figure 3.11). Three hospitals are located within the county, and a wide range of diagnostic and treatment options are available.

With two hospitals, including a Cancer Center, three clinics, one of which offers mammograms, and a medical supply depot, Guthrie is the major breast health provider in Bradford County. Guthrie’s Robert Packer Hospital in Sayre, PA offers a full spectrum of breast health services, including the Guthrie Breast Care Center, a specialized diagnostic and breast education facility. Its services include screening and diagnostics, the latest breast imaging modalities, advanced treatment options and survivorship programs.

Guthrie’s breast care team includes the region’s only fellowship-trained breast oncoplastic surgery specialist, fellowship-trained women’s imaging specialists, a dedicated medical oncologist and a nurse navigator to support breast cancer patients throughout cancer care. Guthrie breast care experts provide a full range of treatment options. Robert Packer Hospital also offers a monthly general women’s cancer survivor group.

The Breast Screening Center at Memorial Hospital in Towanda, PA performs screening mammography, ultrasounds and biopsies.

Maternal and Family Health Services, Inc. (MFHS), a nonprofit health and human services organization, serves 125,000 uninsured and underinsured individuals in 16 Pennsylvania counties, including Bradford County, PA, through publicly and privately funded programs, including the Healthy Woman Cancer Screening Program.

The MFHS Breast Health Initiative has provided breast health education and screening to uninsured and underinsured women served through WIC Nutrition Centers in Bradford County for ten years. MFHS is a long-term partner of the Affiliate. MFHS also is able to assist women in accessing care beyond diagnosis by facilitating enrollment into the federally funded Breast and Cervical Cancer Prevention Treatment (BCCPT) Program via the Healthy Woman Project.

Through a toll-free hotline, MFHS staff provides information, determines eligibility, makes referrals and completes necessary forms for each caller. MFHS carefully monitors these inquiries and has identified barriers to care beyond the availability of free screening services, such as those women who need pre-admission testing to receive a biopsy and women who

90 | Page Susan G. Komen® Upstate New York November 2017 have no primary care physician and cannot obtain a prescription to receive a mammogram. Gas cards are available for transportation needs.

The primary population served through the education and information portion of the MFHS Breast Health Initiative are uninsured and underinsured women and mothers / caretakers of children who are enrolled in the WIC Nutrition Program in rural Bradford County. A target population of 700 low-income women, including inhabitants of Tioga County, PA receive direct breast health education and counseling through this initiative. All women served must meet income eligibility for WIC, at 185 percent or less of the Federal Poverty Level (FPL). An additional 95 women per year receive free breast screenings (clinical breast exam and screening mammogram) who meet eligibility requirements for the Healthy Woman Cancer Screening Project guidelines (250 percent or less of FPL); with an estimated 10 of these women also receiving assistance with transportation needs related to breast health care per annum.

In rural Pennsylvania, breast health programs and services are limited. The mountainous terrain and winding roads create geographic barriers making access to programs and services a challenge that may result in lower screening percentages that contribute to later stage diagnoses.

Women referred to one of the MFHS breast health screenings receive their CBE and/or mammogram as outlined in the program guidelines/protocol services: mammograms and CBEs through the PA Healthy Woman Cancer Screening Program and mammograms funded by the Affiliate. Each client has a medical home (or referral) which is responsible for follow-up in accordance with medical standards of care. Through collaborative efforts of providers, women screened through the MFHS Healthy Woman Program are eligible for additional free testing and diagnostics should they have abnormalities.

Traci’s Hope, located in Tioga County, NY, is a not-for-profit organization dedicated to helping people who have been diagnosed with breast cancer in Tioga and Broome Counties, NY and Bradford and Susquehanna Counties, PA. Traci’s Hope provides monetary support, but does not provide direct medical services. According to the organization’s website, Traci’s Hope distributed $58,000 to eligible people through 2010. Traci's Hope will provide funding for medical costs and supplies related to a breast cancer diagnosis, utilities, housecleaning, rent/mortgage, transportation, childcare and other needs upon request to anyone in its service region who has been diagnosed with breast cancer (including recurrence or metastasis), is in the midst of breast cancer treatment (surgery, radiation, chemotherapy), or it has been less than a year since the completion of treatment. Breast cancer patients must apply for the funding, which is limited to $1,000 per year and $2,500 over a lifetime.

The American Cancer Society provides its Road to Recovery Program in Bradford County, PA. Cancer patients who are undergoing active treatments, are ambulatory and require transportation to an appointment can telephone a week in advance to schedule a ride from a volunteer, if one is available. The American Cancer Society's ABCD mentorship program also is available for patients in Bradford County, but is, again, volunteer-dependent.

Despite the presence of a major health system, Guthrie, women in overwhelmingly-rural Bradford County must still travel far for mammograms and for treatment and follow up, if

91 | Page Susan G. Komen® Upstate New York November 2017 necessary. Guthrie does not offer lymphedema therapy, and the patient navigator at Robert Packer refers survivors needing therapy from across the county to ProCare Physical Therapy, in Towanda. In addition, there are no dedicated breast cancer survivor support groups in Bradford County.

Western Region Allegany County, NY Allegany County is located in the Southern Tier of the Western Region. With an estimated population of 48,109 (U.S. Census Bureau, 2013), it is defined as rural and medically underserved. As Allegany and Cattaraugus Counties share similar demographics, they frequently collaborate in delivering services. The counties have a combined New York State Cancer Services Program. CSP provides financial services to uninsured and underinsured women, as well as a support group for cancer survivors and their loved ones. Most outreach programs in this target area are provided by CSP. Allegany County offers a few options for preventive and screening services (Figure 3.12). Two hospitals in Allegany County offer screening mammograms; one hospital, Jones Memorial Hospital, performs biopsies.

In rural areas such as Allegany County, the distance to breast cancer screening and treatment services is a major barrier, impeding access to care. Due to this limitation, many patients are referred out to a local hospital or larger organization outside of the target area to receive screening, diagnostic follow-up, and treatment. This often requires traveling far distances outside of their communities to the nearest city or surrounding counties to receive services, a major contributor to the lack in screening in these areas. Much like Cattaraugus County, Allegany County’s Native American population receives services via the Seneca Nations Health System (SNHS). Native American women in Allegany County are eligible to receive services from either the Cattaraugus Indian Health Center or Cattaraugus Community Health Center located in a neighboring county.

Health services are offered to those persons within the Contract Health Services Delivery Area (CHSDA) who are defined as eligible under federal and tribal guidelines. The service areas include the counties of Allegany, Cattaraugus, Chautauqua, Erie (excluding the Tonawanda and Tuscarora Territories) and Niagara in New York and Warren County in Pennsylvania. The Lionel R. John Health Center in Allegany County offers a variety of services including preventive services and screening. Although Allegany County offers some services for Native American women, resources are limited and require significant additional travel to access services.

Patient navigation services are a valuable resource for women transitioning through the continuum of care. Patient navigation, support groups, and survivorship services are lacking in rural counties. The Affiliate was unable to identify any support groups available in Allegany County.

Cattaraugus County, NY Cattaraugus County is located in the Southern Tier of the Western Region and neighbors Allegany County. With an estimated population of 78,892 (U.S. Census Bureau, 2013), it is defined as rural and medically underserved. Ninety-three percent of residents are white, only one percent are African American, and even fewer are Hispanic/Latina (U.S. Census Bureau, 2009). The Seneca Nation of Indians has reservations in Cattaraugus County. The Allegany

92 | Page Susan G. Komen® Upstate New York November 2017 Indian Territory is completely within Cattaraugus County, including the city of Salamanca.

As Allegany and Cattaraugus Counties share similar demographics, they frequently collaborate in delivering services, one example being a combined New York State Cancer Services Program. The Cancer Services Program provides financial services to uninsured and underinsured women, as well as support for cancer survivors and their loved ones. Most outreach programs in this target area are provided by CSP. Other agencies that provide education and support programs include the Cattaraugus County Health Department and the Breast and Cervical Health Partnership of Cattaraugus County (Figure 3.13). Funded by the New York State Department of Health, the Breast & Cervical Health Partnership of Cattaraugus County sponsors low cost or no cost breast and cervical cancer risk reduction services to uninsured or underinsured women, ages 40 and over, at various locations in the area.

In rural areas such as Cattaraugus County, the distance to breast cancer screening facilities and treatment services is a major barrier, impeding access to care. There are few locations in the area that offer screening mammograms, most being located in Olean, the largest city in the county. Olean is located in the southeast section of the county and is over an hour drive on country roads for many area residents. In terms of treatment, there are even fewer options; only one organization in the county, located in Olean, offers chemotherapy treatment. Due to this limitation, many patients are referred to hospitals or larger organizations outside of the target area to receive screening, diagnostic follow-up, and treatment. Transportation is a major contributor to the lack of screening in Cattaraugus County and continue to pose challenges for women in Cattaraugus County seeking access to cancer care services.

Cattaraugus County’s Native American population receives services via the Seneca Nations Health System (SNHS), a recognized non-profit public health organization which maintains a federal contract with the Indian Health Services (IHS) under public health law 93-368 Title 1. Health services are offered to those persons within the Contract Health Services Delivery Area (CHSDA) who are defined as eligible under federal and tribal guidelines. Although the Cattaraugus Indian Health Center and Cattaraugus Community Health Center are located in Chautauqua County (a neighboring county), Native American women in Cattaraugus are eligible to receive services at either location. However, this requires women to travel extensively outside of their communities.

Patient navigation and survivorship services are a valuable resource for women transitioning through the continuum of care. Patient navigation, support groups, and survivorship services are severely lacking in Cattaraugus County. The Affiliate could only identify one location that offered a support group. Again, this was located in the city of Olean at the area’s largest hospital.

Erie County, NY Erie County is the most populated county (919,866) in the Western Region with of the City of Buffalo being more populated (258,959) than any single county in the service area (U.S. Census Bureau, 2009). The most diverse of any county, 38.6 percent of residents are African American, 50.4 percent are White, and 10.5 percent are Hispanic or Latino (U.S. Census Bureau, 2010). The City of Buffalo is the third poorest city in the United States according to the Census Bureau among cities with a population of more than 250,000 (U.S. Census Bureau, 2007).

93 | Page Susan G. Komen® Upstate New York November 2017 Of all the counties in the Western Region, Erie County hosts the largest number of options for screening, diagnosis and treatment; there are 35 locations for women to receive screening mammograms, 29 to obtain a breast ultrasound, and 18 to get a breast MRI (Figure 3.14). One of Erie County’s biggest assets is Roswell Park Cancer Institute (RPCI). It is one of the largest cancer centers in the area, located in the developing Medical Campus in downtown Buffalo, and is a National Cancer Institute Designated Cancer Center. Windsong Comprehensive Breast Care (WCBW) provides a multidisciplinary approach to care from early detection, diagnosis, consultation, treatment options, and survivorship programs. WCBW links patients to their affiliated radiology and oncology centers. WCBW is the Western Region’s first and only breast care facility to receive accreditation by the National Accreditation Program for Breast Centers. Several of the mentioned screening and treatment locations are located in the City of Buffalo, many of which are hospital based and are accessible via public transit system.

Aside from screening and treatment services, Erie County is home to many organizations that offer education, support, and survivorship to residents. Cancer care support organizations include, but aren’t limited to, transportation to services, complementary therapies (massage, spiritual healing, retreats), side effect management (custom wigs), breast cancer support groups (for individuals, family members, women currently seeking treatment, and women in remission), and counseling and/or nutrition programs. Patient navigation and education programs are available for underserved communities. Specifically, the Buffalo/Niagara Witness Project offers outreach and education to African American Women. Esperanza y Vida offers similar services to Hispanic/Latina women. Cancer Services Program (CSP) of Erie County is instrumental in engaging uninsured and underinsured women in cancer screening, follow-up and treatment.

While the women in Erie County have greater opportunity to receive breast health services, many locations are situated in the more affluent suburbs and are often out of reach for underserved women in the city. The increase in relocation of screening sites has created a barrier to accessible screening and treatment options as public transit may not always reach these areas and many women lack personal transportation. A new addition is being added to the Roswell Campus that will now offer screening mammography services. Even though many primary care offices offer Clinical Breast Exams (CBEs) and mammography referrals, many women are not being screened according to guidelines. The safety-net practices and health centers see an abundance of patients with multiple complex conditions and often find prioritizing health needs difficult. Information on screening and treatment facilities it is not easily obtained. Many women in underserved communities have limited access to technology and cannot navigate the complex health system. Navigation is available once a diagnosis is made, but resources are limited to engage women in the continuum of care.

Wyoming County, NY Wyoming County is located in the Southern Tier of the Western Region and neighbors Erie County. With an estimated population of 41,531 (U.S. Census Bureau, 2013), it is defined as rural and medically underserved.

This target community has two locations that offer screening mammograms to residents (Figure 3.15). Financial resources for uninsured and underinsured women are available through the Cancer Services Program of Livingston and Wyoming Counties.

94 | Page Susan G. Komen® Upstate New York November 2017 Wyoming County severely lacks breast cancer screening, treatment, and support services. Only one location in the county offers mammograms, both screening and diagnostic, therefore many women encounter barriers to accessing screening services. In terms of diagnosis and treatment, there is only one site in the county that offers these services, therefore residents often travel to other areas to access care. Wyoming County is a very rural county and is spread out over a large area. For some women, it is closer for them to drive to areas outside the county for treatment and follow up. There are also more options for them to choose from in neighboring counties such as Cattaraugus County. To the Affiliate’s knowledge, no patient navigation or survivorship services currently exist in Wyoming County.

95 | Page Susan G. Komen® Upstate New York November 2017 Figure 3.2. Breast cancer services available in Monroe County, NY- Central Region

96 | Page Susan G. Komen® Upstate New York November 2017 Figure 3.3. Breast cancer services available in Onondaga County, NY- Central Region

97 | Page Susan G. Komen® Upstate New York November 2017

Figure 3.4. Breast cancer services available in Seneca County, NY- Central Region

98 | Page Susan G. Komen® Upstate New York November 2017

Figure 3.5. Breast cancer services available in Albany and Schenectady Counties, NY- Northeastern Region

99 | Page Susan G. Komen® Upstate New York November 2017

Figure 3.6. Breast cancer services available in Franklin County, NY- Northeastern Region

100 | Page Susan G. Komen® Upstate New York November 2017

Figure 3.7. Breast cancer services available in Fulton County, NY- Northeastern Region

101 | Page Susan G. Komen® Upstate New York November 2017

Figure 3.8. Breast cancer services available in Montgomery County, NY- Northeastern Region

102 | Page Susan G. Komen® Upstate New York November 2017

Figure 3.9. Breast cancer services available in Saratoga County, NY- Northeastern Region

103 | Page Susan G. Komen® Upstate New York November 2017 Figure 3.10. Breast cancer services available in Tioga County- Twin Tiers Region

104 | Page Susan G. Komen® Upstate New York November 2017

Figure 3.11. Breast cancer services available in Bradford County, PA- Twin Tiers Region

105 | Page Susan G. Komen® Upstate New York November 2017

Figure 3.12. Breast Cancer Services Available in Allegany County, NY- Western Region

106 | Page Susan G. Komen® Upstate New York November 2017

Figure 3.13. Breast Cancer Services Available in Cattaraugus County, NY- Western Region

107 | Page Susan G. Komen® Upstate New York November 2017

Figure 3.14. Breast Cancer Services Available in Erie County, NY- Western Region

108 | Page Susan G. Komen® Upstate New York November 2017

Figure 3.15. Breast Cancer Services Available in Wyoming County, NY- Western Region

109 | Page Susan G. Komen® Upstate New York November 2017 Key Partnerships in the Regions Central Region Monroe County, NY In Monroe County, through the Affiliate’s Grant Program, the Affiliate collaborates with the University of Rochester’s CSP which serves inner city poor and minority populations. The Affiliate also partners with the Anthony L. Jordan Health Center in Rochester, a primary care community health center with close ties to underserved communities in that city and environs. Partnerships with more Monroe County advocacy groups, such as F.R.E.E. (Facing Race, Embracing Equity) would enhance the Affiliate’s ability to help inner-city women of Rochester.

Onondaga County, NY In Onondaga County, through the Affiliate’s Grant Program, the Affiliate collaborates with Upstate Medical Center, the Onondaga County Health Department, ARISE, Crouse Hospital, Syracuse University, and St. Joseph’s Hospital to provide a variety of screening, diagnostic and treatment services to underserved, underinsured and uninsured women. The Affiliate is also collaborating with SUNY Upstate Medical University in a pilot project at Pioneer Homes, a public housing project in Syracuse. The project involves training of neighborhood peer mentors who assist women who live in the project in understanding and accessing important breast health prevention and treatment services. Partnerships with more faith-based groups in Syracuse, such as the new Shades of Inspiration support group of diverse survivors, may help the Affiliate to reach more underserved women.

Seneca County, NY The Affiliate currently does not collaborate with any organizations in Seneca County but plans to collaborate with the American Cancer Society, Seneca County Health Department and ARISE, which is currently in the process of expanding its services to women with disabilities in Seneca County, to serve the women in this county.

Northeastern Region Albany and Schenectady Counties, NY The Affiliate has good partnerships and communication with the service providers in this target community and most are or have been Affiliate community grantees. Given the demographics of the area (the largest Black/African-American population in the region, a high percentage of foreign born and linguistically isolated residents, and a higher than average percentage of residents living below the poverty level); the Affiliate will focus new partnership and collaboration efforts on organizations and outreach efforts to reach Black/African-American women, those foreign born, those living below the poverty level, and those linguistically isolated--all groups that may not have been the target of previous Affiliate grantmaking, education, and outreach efforts.

Franklin County, NY Because of the distance from the Affiliate office to this target community and its geography and demographics, partnerships with all breast health and breast cancer providers across the continuum of care need to be strengthened—very few Affiliate grants have been made to this target community in the past. New partnerships will focus on the county’s high American Indian population and on those medically underserved due to lack of insurance, distance from services, and poverty and education levels.

110 | Page Susan G. Komen® Upstate New York November 2017 Fulton County, NY The Affiliate has made just one grant in the past in this target community. New partnerships and collaborations will focus on increasing Affiliate grants to this area and targeting services to address the high late-stage diagnosis rate in this community and target those not getting services along the continuum of care due to lack of insurance, low education, and high poverty and unemployment levels.

Montgomery County, NY New partnerships are needed with organizations to address the large Hispanic/Latina population in this target community and those that are in medically underserved areas—due to distance from services or the lack of services available in the target community, as well as the demographic issues outlined in the previous section that impact breast cancer outcomes.

Saratoga County, NY The Affiliate has strong partnerships with the nonprofits in the target community and with NYOH, and will work in the future to strengthen its ties with Saratoga Hospital and the Saratoga County Cancer Services Program to address the higher than average breast cancer death rate and late- stage diagnosis rate in this target community, especially through the Affiliate’s grantmaking activities—in the past few Affiliate community grants have been made to this county.

Twin Tiers Region Tioga County, NY The Affiliate provides funding to the Binghamton YWCA ENCOREplus Breast and Cervical Outreach Program, to reach and schedule mammograms for uninsured women.

The Affiliate has reached out to Traci’s Hope to encourage it to apply for a grant. Because it is run by an all-volunteer board and is a very grass-roots organization, Traci’s Hope has thus far declined to apply for a Komen grant.

Given the findings of the Tioga County Health Department’s Community Health Assessment, 2014-17, that women in Richford, NY, in northern Tioga County, and Apalachin, NY, in southern Tioga County, have the highest breast cancer rates in the county, the Affiliate intends to reach out to Mobility Management of South Central New York to discuss how the Affiliate could support its work to offer better transportation options from these very rural locations.

Bradford County, PA The Affiliate provides funding to Maternal and Family Health Services, Inc. (MFHS) for breast health education and screening to uninsured and underinsured women served through WIC Nutrition Centers in Bradford County.

The Affiliate has been in discussion with Robert Packer to fund a breast cancer survivor support group.

111 | Page Susan G. Komen® Upstate New York November 2017 Western Region Allegany County, NY The Affiliate New York currently does not have existing key partnerships in Allegany County, but hopes to develop new partnerships in the future. The Affiliate would like to develop a relationship with primary care practices in Allegany County to encourage the use of the mobile mammography unit to address transportation and financial barriers, as well as the county Department of Health. The Affiliate will also market their Community and Small Grant Programs to support programming and services that encourage education, awareness, screening and treatment for this underserved target area.

Cattaraugus County, NY The Affiliate currently does not have existing key partnerships in Cattaraugus County, but hopes to develop new partnerships in the future. The Affiliate will pursue relationships with health-care entities in the county, including the county’s health department programs, primary care practices and the Seneca Nation Health System in Cattaraugus County. The Affiliate will also market their Community and Small Grant Programs to support programming and services that encourage education, awareness, screening and treatment for this underserved target area.

Erie County, NY The Affiliate partners with several organizations to provide outreach and encourage breast cancer screening. They have provided funding to Cancer Services Program of Erie County, Esperanza y Vida, the Buffalo/Niagara Witness Project, the University of Buffalo’s Department of Family Medicine, International Institute, and others. The Affiliate has partnered with the Cancer Services Program of Erie County to provide free screening to uninsured and underinsured women.

Several projects funded by the Affiliate are in partnership with the mobile mammography coach, operated by WNY Breast Health and the Erie County Medical Center (ECMC) Lifeline Foundation, . With support from Komen, the mobile mammography coach is available at four safety-net practices (UBMD Jefferson Family Medicine, Jericho Road Community Health Center Barton Street, Jericho Road Community Health Center Genesee Street, and ECMC Cleve Hill Family Health Center) once a month through the partnership with the University of Buffalo’s Department of Family Medicine. Through this program, patient ambassadors provide peer support and are trained to deliver breast health education to women and assist them through the breast screening process. The presence of the bus at these sites eliminates the need for women to travel to a secondary location for mammography. Women are able to make one trip to their primary care practice and receive their mammogram the same day as other appointments. Women who are not patients at the listed practices are also able to utilize the services. At the Jericho Road sites, interpreters are available to assist non-English speaking women to receive their mammograms. The patient ambassadors also assist in linking uninsured and underinsured women to Cancer Services Program.

The coach is also utilized by Esperanza y Vida and the Buffalo/Niagara Witness Project at community and faith-based venues. Esperanza y Vida is a program to increase breast and cervical cancer screening in Latinas living in rural and urban areas, and to investigate barriers to cancer care. The Buffalo/Niagara Witness Project educates participants on early cancer

112 | Page Susan G. Komen® Upstate New York November 2017 detection through stories told by breast and cervical cancer survivors in churches and community settings.

The mobile mammography coach and its partners are some of the strongest partnerships the Affiliate collaborates with in Erie County, especially in underserved communities. The Affiliate hopes to strengthen and maintain existing partnerships as well as build new relationships in the future. Additional partners include WGRZ media, local payers including Independent Health Association and Univera, and hospital systems including Kaleida and Catholic Health Systems.

The Affiliate is working to enhance their partnership with primary care and OB/GYN practices in Erie County. Although there are already several existing partnerships, there are other opportunities to expand. Specifically, the Affiliate has engaged the Catholic Health System to assist in getting the word out about Komen and its funded programs to their providers. The Affiliate will also engage new partners in media and marketing to educate the community and assist in the dissemination of efforts supported by Komen.

Wyoming County, NY The Affiliate currently does not have existing key partnerships in Wyoming County, but hopes to develop new partnerships in the future. The Affiliate strives to develop relationships with primary care practices in Wyoming County and the county Department of Health to encourage the use of the mobile mammography coach to address transportation and financial barriers. The Affiliate will also market their Community and Small Grant Programs to support programming and services that encourage education, awareness, screening and treatment for this underserved target area. Wyoming and Livingston County have a shared Cancer Services Program. Since Livingston County is outside of the Affiliate’s service area, it has been difficult to establish a working relationship with them. A goal of the Affiliate is to build a partnership with this CSP.

Public Policy Overview

The public policy overview describes the Affiliate’s environment with regard to federal, state and county agencies that coordinate and provide breast health services. These include the New York State Cancer Services Program, New York State Comprehensive Cancer Control (CCC) program, and the implications of the Affordable Care Act for Medicaid expansion and for providers of breast health services.

National Breast and Cervical Cancer Early Detection Program (NBCCEDP) The National Breast and Cervical Cancer Early Detection Program (NBCCEDP), partially funded by the Centers for Disease Control and Prevention (CDC), provides breast and cervical cancer screening services to women who are low-income and uninsured. States are able to determine the guidelines for their particular statewide program and hence are able to define the eligibility criteria for their respective state programs.

New York State Cancer Services Program It is important to know how federal and state public policies impact breast health along the breast cancer continuum of care. An integral part of New York’s breast cancer screening program is the New York State Cancer Services Program (CSP) which provides breast, cervical and colorectal cancer screenings at no cost to women and men who: do not have health insurance or have health insurance that does not cover the cost of these screenings, cannot pay 113 | Page Susan G. Komen® Upstate New York November 2017 for these screenings, meet income eligibility requirements, meet age requirements, and live in New York State. Cancer screening available through CSP includes mammography and clinical breast exams for women ages 40 and older and women under age 40 at high risk for breast cancer. CSP funds local contractors and services are provided in local clinics, health centers, doctors' offices and hospitals in every county and borough in New York State by those health care providers participating in the CSP. The Cancer Services Program also provides: assistance with patient recruitment, education and case management; access to CSP- sponsored professional and continuing medical education; free patient education materials; and access to a network of CSP-sponsored cancer survivorship, support and legal assistance programs.

Each year, these contractors screen tens of thousands of women for breast and cervical cancer and men and women for colorectal cancer. Operating through 36 Partnerships—a network of thousands of hospitals, clinics and doctors' offices – they provide crucial cancer screening, diagnostic services and case management for New Yorkers with little or no insurance in every county of New York State. The CSP operates 1-866-442-CANCER (2262), a 24/7 toll- free referral phone line that refers callers directly to screening services, support services, legal services, and genetic counselors in their area and interpreters are available. The New York State Budget appropriation for this program in SFY 2014-15 was $25.281 million (a combination of federal and state funds--the CSP receives federal funds from the Centers for Disease Control and Prevention- CDC for breast and cervical cancer screening as part of the National Breast and Cervical Cancer Early Detection Program- NBCCEDP).

According to the New York State Department of Health, Cancer Services Program, in the 2011- 2012 program year, nearly 44,000 eligible women were screened for cancer with over 41,000 mammograms and nearly 40,000 clinical breast exams through the CSP. Over the course of that program year, the CSP identified 467 individuals with breast cancer. A total of 661 clients were enrolled in the Medicaid Cancer Treatment Program (see below) for breast or cervical cancer treatment. The number of women ages 40 to 64 screened through the CSP represented 18.2 percent (42,023/230,589) of the estimated eligible population of women ages 40 to 64 who are uninsured and at or below 250 percent of FPL in NYS for the 2011-2012 program year (New York State Department of Health, Cancer Services Program, 2012).

Since 2008, the Affiliate has worked each year with a coalition of cancer health related organizations to advocate for sufficient funding for this program in the annual New York State Budget (see below). In addition to advocating for funding, the Affiliate interacts with the Cancer Services Program in a number of ways--by referring women to this service, coordinating Affiliate grantmaking and educational efforts with the program and informing the public of the program though emails, social media and the Affiliate website. The Affiliate plans to continue and enhance those efforts over the next few years, especially as New York implements the federal Affordable Care Act.

New York State Medicaid Cancer Treatment Program (MCTP) The Medicaid Cancer Treatment Program (MCTP) is a Medicaid program for eligible persons (individuals who need treatment for breast, cervical, colorectal, or prostate cancer are eligible for Medicaid through the Medicaid Cancer Treatment Program if their incomes are at or below 250 percent FPL) who are found to be in need of treatment for breast, cervical, colorectal or

114 | Page Susan G. Komen® Upstate New York November 2017 prostate cancer (and in some cases pre-cancerous conditions of these cancers). To be enrolled in the MCTP, an individual must complete an application with a New York State Department of Health Cancer Services Program (CSP) Designated Qualified Entity (DQE). A DQE is a person designated and trained by the New York State Department of Health as a “Qualified” entity for the purpose of assisting individuals to complete the MCTP application. Once an individual is enrolled in the MCTP, full Medicaid coverage is provided for an initial period of enrollment as determined by the type of cancer or pre-cancerous condition being treated. Recertification is required yearly, if the individual is still in need of treatment, at which time eligibility is reassessed. Enrollees must receive services from a Medicaid enrolled provider in order to have their services covered.

To be eligible for treatment coverage for breast or cervical cancer, or pre-cancerous breast or cervical conditions, individuals must be: screened for and diagnosed with breast or cervical cancer, or a pre-cancerous breast or cervical condition, by a New York State-licensed health care provider, or, if diagnosed with such in another state, were screened and/or diagnosed by that state’s National Breast and Cervical Cancer Early Detection Program; not covered under any creditable insurance at the time of MCTP application; in need of treatment for breast or cervical cancer or pre-cancerous breast or cervical conditions; a resident of New York State; and a United States citizen or an alien with satisfactory immigration status.

Pennsylvania – Healthy Woman Program Established in 1993, the Pennsylvania HWP provides breast and cervical cancer screening and treatment services to women who have pre-tax household income at or below 250 percent of federal poverty guidelines. The Alliance of Pennsylvania Councils, Inc./Adagio Health (APaC) is the lead agency awarded the CDC grant to administer HWP. Based on 2014 Federal poverty guidelines, this means that to qualify, an individual must earn no more than $29,175 per year (Families USA, 2014). She must be uninsured or have coverage that does not pay for screenings, or be financially unable to afford a required deductible or co-payment. A woman must be between the ages of 40 and 64 for mammograms under this program. Women under 40 may also be eligible for services if symptomatic. If a woman without insurance is diagnosed with breast cancer, she can access Medicaid coverage through the Breast and Cervical Cancer Prevention and Treatment Program (BCCPT). No-cost services provided through HWP include:  Yearly breast mammography  Pelvic exam and Pap test  Diagnostic follow up on abnormal test results  Case management when cancer or a pre-cancerous condition is diagnosed

According to a report by the CDC, in the last five years (2008-2012), 15,872 women have received mammograms under the program and 217 breast cancers were detected (CDC, 2014). According to Census and CDC estimates, 110,000 women are eligible for the HWP in Pennsylvania. However, funding currently covers the cost of screening only 6,100 women a year.

Comprehensive Cancer Program New York State To address the overall cancer burden in New York, the 2012-2017 New York State Comprehensive Cancer Control Plan was released in late 2012 (New York State Cancer Consortium, 2012). The plan, compiled with input from hundreds of organizations and 115 | Page Susan G. Komen® Upstate New York November 2017 individuals, including the New York State Department of Health, details the scope of the cancer burden in New York State and offers suggested strategies to reduce cancer rates and improve the quality of life of individuals and families affected by a cancer diagnosis. The plan reported approximately 109,000 cases of cancer are diagnosed among residents of New York State every year and more than 35,000 residents die every year--more than 95 people per day. There are nearly one million cancer survivors in New York State who may face challenges, including those related to their physical and emotional health. Since cancer is the second leading cause of death in New York State, efforts are needed to reduce the tremendous economic, health and personal burden of cancer and the plan outlines high impact interventions to prevent and control cancer using collaboration between government, health care providers, advocacy groups and other stakeholders to address the burden of cancer across the continuum of cancer care--from prevention and early detection to treatment and quality of life issues.

The first version of the New York State Comprehensive Cancer Control Plan covered the period from 2003 to 2010, providing a strategic plan for cancer control across New York. Although the rate of new cancer cases remained stable between 2005 and 2009, progress was made in preventing deaths from cancer. The 2012-2017 Plan focuses on six priority areas: health promotion and cancer prevention, early detection, treatment, survivorship, palliative care, and the health care workforce. Each section contains background information, measurable objectives and suggested strategies to reduce the burden of cancer in New York State. A few recommended strategies from the plan include: endorsing policies and initiatives that support health-promoting behaviors; developing systems to address disparities related to cancer screening; and encouraging oncology and inpatient programs to incorporate components of palliative care.

Specific to breast cancer the plan includes, but is not limited to, the following measurable objectives:  By 2017, increase the percentage of adults who consume fruits and vegetables five or more times per day by at least 5.0 percent. (Baseline, 2009: 26.8 percent, BRFSS).  By 2017, decrease the percentage of adults who do not participate in any leisure-time physical activity by at least 5.0 percent. (Baseline, 2011: 26.3 percent, BRFSS).  By 2017, decrease the percentage of adults who are obese (BMI >30) by at least 5.0 percent. (Baseline, 2011: 24.5 percent, BRFSS).  By 2017, increase by at least 5.0 percent the proportion of mothers who: a. breastfeed their babies at 6 months (Baseline, 2012: 53.7 percent, CDC National Immunization Survey), b. exclusively breastfeed their babies at 6 months (Baseline, 2012: 15.3 percent, CDC National Immunization Survey).  By 2017, assess available measures related to the utilization of genetic services (Data Source: To be determined) such as those that track: a. data on genetic counseling visits sought by, and genetic tests ordered for, New Yorkers at risk for BRCA 1 or 2 mutations, and b. the proportion of New York residents with a family history of breast and/or ovarian cancer who receive genetic counseling.  By 2017, increase the proportion of women who receive breast cancer screening based on the most recent guidelines by at least 5.0 percent. (Baseline, 2010: 77.7 percent women aged 40 to 74 years who have received a mammogram in the past two years. Source: BRFSS.)

116 | Page Susan G. Komen® Upstate New York November 2017  By 2017, reduce the rate of female breast cancer identified at late stages to 41.7 cases per 100,000 females (Baseline, 2005-2009: 44.4 cases per 100,000. Source: NYSCR).  By 2017, reduce barriers to screenings and diagnostic services for disparate populations so that there are no significant differences in screening percentages and rates of invasive or late-stage diagnosis by race, ethnicity, income level, education level, insurance status or geographic location. (Data Sources: BRFSS and NYSCR.)  By 2017, establish a means by which to assess cancer survivor’ health outcomes (Developmental measures - Potential data sources: BRFSS, American College of Surgeons), including those that track: a. the proportion of cancer survivors across all populations receiving a written care plan, b. the mental and physical health-related quality of life of cancer survivors, c. the proportion of cancer survivors engaging in regular physical activity, d. the number of health care facilities adhering to National Quality Forum consensus standards for symptom management and end-of-life care).

New York State Cancer Consortium To implement the State Comprehensive Cancer Control Plan, the New York State Cancer Consortium was created. The mission of the New York State Cancer Consortium is to reduce the human and economic burden of cancer in New York State and is a statewide network of individuals and organizations dedicated to addressing the burden of cancer in the state. The Consortium members work in communities across the State to implement the types of strategies described in the New York State Comprehensive Cancer Control Plan, track their progress and reprioritize activities as appropriate. Komen Northeastern New York is a member of the New York State Cancer Consortium and was involved in the development of the current plan. The Affiliate is involved in the ongoing efforts to implement the plan and its objectives and strategies in the Affiliate’s service area. The work of the Consortium can be viewed at: http://www.nyscancerconsortium.org/

Capital Region Cancer Care Consortium Covering Albany, Schenectady and Rensselaer Counties, the Capital Region Cancer Services Consortium includes cancer community providers who network, collaborate and advocate increasing the awareness, availability, and accessibility of programs and services for those touched by cancer. The group meets every two months, or more often if needed, to report on current activities and plan new initiatives. Members include: Komen Northeastern New York, the American Cancer Society, Community Hospice, the Leukemia and Lymphoma Society, St. Peter’s Healthcare Partners, Capital District Physicians Health Plan, New York Oncology Hematology, To Life!, and the Capital Region Action Against Breast Cancer. Past projects of the Capital Region Consortium were to create and disseminate a local Cancer Services Resource Directory, a local two-page Survivorship Tip Sheet, and to host two successful seminars for cancer survivors--the Fall 2013 program was on the topic of chemo-brain.

Pennsylvania The Pennsylvania Cancer Control, Prevention and Research Advisory Board (CAB) is the legislatively mandated board established to advise the Pennsylvania Secretary of Health and report to the Governor and the General Assembly on matters pertaining to cancer control, prevention and research. The current Board has spent the last two years developing a plan and is now moving into the implementation phase.

117 | Page Susan G. Komen® Upstate New York November 2017 Although this plan does not have objectives specific to breast cancer, several of the plan goals outlined can hold substantial implications for breast cancer initiatives. The PA Plan recommends:  Enhancing the capacity and engagement of community leaders and stakeholders;  Coordinating approaches to promote access to affordable health care among public agencies and private organizations;  Moving to reduce cancer health disparities caused by social determinants of health;  Promoting evidence-based health provider practices across the cancer care delivery continuum.

The Affordable Care Act The federal Patient Protection and Affordable Care Act of 2010 (ACA) has numerous provisions affecting private health insurance and public health coverage programs and a number of these provisions are of particular note in preventing, screening and treating cancer. The ACA requires: that insurers not deny coverage based on pre-existing conditions and prohibits lifetime/annual caps on coverage, insurance plans must have certain minimum coverage standards (essential health benefits), insurance plans must cover preventative services with no cost sharing; children can remain on their parents health insurance until age 26, individuals (unless exempt) must purchase health insurance or pay a non-compliance penalty, those without employer or government health insurance coverage can purchase insurance through a State or Federal Exchange and can get a tax credit if they meet income eligibility. The ACA also facilitates breast education for young women and clinical trials.

Prior to the implementation of the Affordable Care Act and the consequential insurance mandate, there were just under 2.3 million people in New York and just over 1.4 million people in Pennsylvania that were uninsured.

With regards to Health Insurance Marketplace status, New York opted for a state-based marketplace and Pennsylvania opted for a federally-facilitated marketplace. By the end of open enrollment 2014, almost 690,000 individuals selected a Marketplace plan in these states (Kaiser Family Foundation, 2014) (Table 3.1).

Table 3.1. Marketplace Enrollment in New York and Pennsylvania Total Number of Number of Individuals Determined or Number of Individuals Eligible to Assessed Individuals Marketplace Determined Enroll in a Eligible for Who Have Location Type Eligible to Marketplace Medicaid/CHIP Selected a Enroll in a Plan with by the Marketplace Marketplace Financial Marketplace Plan Plan Assistance New York State-based 707,638 369,380 646,018 370,451 Federally- Pennsylvania 549,205 332,915 42,335 318,077 facilitated

Pennsylvania falls slightly under the national average and New York falls slightly above the national average of 28 percent of potential enrollees (Polsky, et al., 2014).

118 | Page Susan G. Komen® Upstate New York November 2017 Medicaid Expansion New York One of the major provisions of the ACA was an increase in the Medicaid income threshold which is used to determine if an individual or family qualifies for the program, Medicaid expansion, which New York State has opted into. Medicaid now serves more than 6.2 million New Yorkers annually, most of who are in low-income working families. Annual spending on

Medicaid services in New York—services only, excluding administrative and other costs —is nearly $50 billion. The Affordable Care Act ushered in a new era of health care reform and made substantial changes in Medicaid eligibility while also increasing federal support for the states by financing a coverage expansion. With the passage of the ACA, the law established a new national minimum financial eligibility level for most individuals under the age of 65, essentially allowing most people under a certain percentage of the federal poverty level (FPL) to qualify for the program. Additionally, for this population, the ACA eliminated the use of an asset test for Medicaid nationally, leaving income as the sole determinant of their financial eligibility. The ACA expanded Medicaid by establishing a new eligibility group for adults under 65 with incomes at or below 133 percent FPL, effectively eliminating categorical eligibility and ending the historical exclusion of childless adults from the program.

Well before the enactment of the ACA, New York had one of the nation’s most expansive eligibility standards, which included coverage for childless adults under age 65 up to 100 percent FPL and parents up to 150 percent FPL through Family Health Plus (FHP), according to a recent report by the Medicaid Institute at the United Hospital Fund. Given New York’s eligibility levels before health reform, only a subset of New Yorkers—childless adults between 100 percent and 133 percent of the federal poverty level—became newly eligible for Medicaid under the ACA. This expansion is expected to result in the addition of about 77,000 beneficiaries, a small fraction of the total Medicaid population in New York and smaller proportional growth than seen in other states adopting the expansion. In addition, the ACA envisioned an improved enrollment process reaching a larger number of people who were previously eligible for Medicaid but not enrolled in it. The ACA also changed how income is counted for the purposes of determining Medicaid eligibility for most non-elderly, non-disabled individuals. In order to streamline eligibility determinations, the ACA requires the use of a formula used in federal tax law called modified adjusted gross income (MAGI). After making a few adjustments from gross income, an additional 5.0 percent of income is then deducted, effectively expanding eligibility from 133 percent FPL to 138 percent FPL (Medicaid Institute at the United Hospital Fund, 2014).

Although the ACA will reduce the number of uninsured women, the NBCCEDP will still be needed to support access for millions of women who will remain uninsured after full implementation of the ACA—estimated to be about 12.0 percent of New York women. If future numbers of women served by NBCCEDP are comparable to recent numbers, the program will still only be able to meet the needs of one-fifth to one-third of those eligible. NBCCEDP is a grant program, and its funding is limited by federal and state appropriations; the program has never had sufficient funds to serve all eligible women. It is expected that after ACA implementation there will be a greater need for cancer outreach and patient navigation services through the NBCCEDP—to ensure women, whether they are insured or uninsured, receive assistance and encouragement to be screened. The women uninsured will be harder to reach as well and likely to have limited education and limited English proficiency, especially immigrant

119 | Page Susan G. Komen® Upstate New York November 2017 populations. Local NBCCEDP programs will need to adapt their educational and outreach approaches to meet the needs of these women and also women who have trouble accessing screening due to transportation or geographic barriers.

The Centers for Disease Control and Prevention (CDC) report even women with insurance after the implementation of ACA, and who now have insurance coverage for screening, may be eligible for NBCCEDP services for diagnostic tests, such as biopsies or other imaging, which may be subject to unaffordable deductibles or copayments. The NBCCEDP will also need to adjust to the shift in uninsured patient populations—the ACA will result in a geographic shift in the remaining uninsured population depending on the policies the state has adopted (Centers for Disease Control and Prevention, 2012).

Pennsylvania Pennsylvania did not agree to set up a state exchange, nor accept the program funding to expand Medicaid. Expansion of Medicaid would impact families earning less than 138 percent of the Federal poverty level. As a result, the impact of the law on reducing the numbers of uninsured Pennsylvanians has been minimal. An analysis by the Urban Institute compared the types of health coverage held by Philadelphians under the age of 65: there were 16.2 percent uninsured and 32.6 percent on Medicaid before the ACA took effect. Currently, 11.9 percent are uninsured and 34.1 percent are on Medicaid. If Pennsylvania had expanded Medicaid, these numbers would have been 7.0 percent uninsured and 41.1 percent on Medicaid (Buettgens & Dev, 2014).

In 2014, Pennsylvania proposed an alternative plan, called Healthy Pennsylvania that would give federal subsidies to approximately 500,000 low income uninsured, in order to purchase private insurance on the state’s federally run exchange. In addition to being the only program requiring individuals with income from 100 to 138 percent of FPL to pay monthly insurance premiums, the proposal also uniquely ties participation to a work-search requirement. Further, this plan would cut benefits that current Medicaid recipients already receive. This plan has not yet received approval from the Federal Department of Health and Human Services (Worden & Sapatkin, 2014).

ACA Impact While it is too early to ascertain the full impact the Affordable Care Act will have on health care providers, some impacts seem to be widely accepted. Since the ACA will lead to more insured people who in turn are likely to seek health care in greater numbers, it is anticipated there will be increased demand for additional health care providers—especially in primary care given the emphasis on preventative care and screenings—and could lead to shortages of available providers. It is also anticipated that the law will lead to even more mergers and consolidations of health care facilities and providers. The ACA is also likely to lead to greater use of electronic records and patient centered medical homes—to increase patient care coordination.

The Affiliate will keep close watch on changes created by implementation of ACA on the provision of breast health and breast cancer services in the service area and respond to any changes though the Affiliate’s educational efforts and grantmaking. It is anticipated that as more women become insured and have access to no cost breast cancer screening that increased emphasis will be placed on patient navigation services and survivorship/support

120 | Page Susan G. Komen® Upstate New York November 2017 services—those services may receive increased resources from Affiliate grantmaking. The Affiliate will also work with community partners on reaching the women in the community expected to remain uninsured even after full implementation of ACA and those who face barriers to utilizing breast cancer and breast health services due to transportation/geographic issues or lack of available services in an area and language and cultural barriers.

Health Systems and Public Policy Analysis Findings

Central Region A barrier the Affiliate has identified pertains to health insurance coverage. This is not obvious because of two favorable situations. The first favorable situation would be the Affiliate's QDR shows health insurance coverage for each of the three target counties is better than for New York State and the US as a whole (QDR Table 2.5). Additionally, New York State has no "coverage gap" with the ACA so that all lower income levels are covered by marketplace subsidies or Medicaid expansion.

But these data mask racial and ethnic disparities in health insurance coverage in the state. In 2013, New York State Blacks/African-Americans were almost twice as likely to be uninsured as Whites, 13 percent vs. seven percent (Kaiser Family Foundation, 2013), and Latinas are three times more likely to have no health insurance (New York State Minority Health Surveillance Report). Both Monroe and Onondaga Counties are predominantly White, with Black/African- American populations of 17.2 and 12.5 percent, respectively (QDR Table 2.4). But the major cities in the Central Region target communities have higher minority populations: 41.7 percent Black/African-American in Rochester, Monroe County, and 29.5 percent in Syracuse, Onondaga County (US Census, 2010). In addition, Monroe County has the largest proportion of Latinas in the Central Region (QDR Table 2.4). So lack of insurance in targeted communities of color is not apparent in the county-wide data where the vast majority of residents are White.

New York State's minority populations also have a history of "eligible but uninsured" that predates the passage of the ACA. In both 2003 and 2008 Black/African-American New Yorkers were twice as likely as Whites to be uninsured (New York Health Care Commission and New York State Department of Health). In 2012 New York State had over 640,000 adults who were eligible for Medicaid (less than 138 percent of the federal poverty limit), but were not enrolled (Kenney, 2012).

The combination of racial disparities in insurance and "eligible but uninsured" suggests that a sizeable portion of low-income urban women of color qualify for Medicaid but do not receive these benefits. These women need to be included in health care plans that now include mammography and other preventive services to bring them into the continuum of care.

A second insurance issue is that currently, many providers do not accept Medicaid, leaving county agencies to bargain with some providers to contract for services for county residents who would otherwise lack access to preventive services such as mammography. Komen Upstate New York often serves as a back-up for women who are unable to access breast health services through the counties by referring women to providers who accept Medicaid. There is potential for the ACA to favorably influence this trend through increased enrollment in insurance providers that are affiliated with New York State of Health.

121 | Page Susan G. Komen® Upstate New York November 2017 The health care system is fragmented and is difficult to navigate. This affects the continuum of care as there may be poor communication and transition between screening, diagnosis, treatment and follow-up components. For women who continue to lack health insurance after implementation of the ACA, the fragmented health care system will present barriers to care that appear insurmountable. This will continue to be a focus for the Affiliate to enable all women who are in need of breast health services to obtain them.

The Affiliate has strong relationships with local agencies and providers of preventive and treatment services. While funding may trickle down from the NBCCEDP, the “go-to” agencies are county CSPs. Komen Upstate New York works with other partners such as the St. Agatha Foundation and the American Cancer Society, and functions to link women who need care with agencies and providers who can assist in accessing care or provide care directly. Through the grants process, the Affiliate directs funding for important outreach, preventive, education and navigation services.

At the time of this writing, the ACA is somewhat of a wild card in the health care system. Due to the current political and economic climate, it is difficult to predict how the ACA will affect the continuum of breast cancer care in the Central Region area. The Affiliate will need to anticipate, evaluate and respond to changes that result from ongoing implementation of the ACA as they become apparent.

Northeastern Region Saratoga County is a populous area with some providers across the entire Breast Cancer continuum of care, although additional resources and Affiliate grantmaking activity may be needed. The Albany/Schenectady Counties target community has many providers along the continuum of care, but focus will be needed on access and utilization of those services by Black/African-American women, the poor and those linguistically isolated and foreign born. The other three target communities in the service area (Franklin, Fulton and Montgomery Counties) share many similar characteristics that need to be examined as impediments to positive breast health—very few providers along the continuum of care, a high percentage of medically underserved populations, a higher percentage of those who lack of insurance, higher poverty levels and lower educational levels. In Franklin County, emphasis will be placed on the high American Indian population and in Montgomery County on the high Hispanic/Latina population. New and strengthened partnerships and collaborations are needed with each target communities’ local Cancer Services Program and hospitals. In most of the target communities, new partnerships are needed with nonprofits to provide critical support/survivorship services. Primary care doctors also will be important future partners to increase utilization of screening in the target communities and programs will be needed to reduce barriers in geographically isolated areas to access available screening. All of these factors will be explored further in the next section gathering qualitative data on each target community.

Twin Tiers Region Due to a lack of breast health care facilities within the county and its overwhelmingly rural nature, women in Tioga County, NY experience difficulties throughout the continuum of care. In particular, uninsured and underinsured women must wait until the mobile mammography van visits Tioga County, travel to the van’s location, and generally seek follow-up diagnostics and treatment outside Tioga County. For women living in northern Tioga County, in particular,

122 | Page Susan G. Komen® Upstate New York November 2017 transportation is a key barrier to care, and for all women, survivor programs are completely absent.

The Binghamton YWCA ENCOREplus Program, which receives partial funding through Komen Upstate New York, is a key provider of breast health education and a facilitator of mammograms for uninsured and underinsured women in the county. The continuation of the strong Cancer Screening Program in New York State and expansion of Medicaid coverage will help ensure that at least through treatment, women should proceed through the continuum of care. As transportation remains a key barrier to accessing this care, however, The Affiliate will seek out potential transportation partners. To the extent possible, the Affiliate also will promote the expansion of breast cancer survivor support groups to Tioga County. Although Bradford County, PA has several mammography locations and one full breast cancer center, due to the overwhelmingly rural nature of the county, uninsured and underinsured women experience difficulties throughout the continuum of care. Breast cancer-specific survivor programs are completely absent.

Maternal & Family Health Services, which receives partial funding through Komen Upstate New York, is a key provider of breast health education and a facilitator of mammograms for uninsured and underinsured women in the county. The continuation of the Healthy Woman Program in Pennsylvania and expansion of Medicaid coverage will help ensure that at least through treatment, women should proceed smoothly through the continuum of care. As transportation remains a key barrier to accessing this care, however, Komen Upstate New York will continue to make transportation a priority. To the extent possible, the Affiliate also will promote the founding of one or more breast cancer survivor support groups in Bradford County.

Western Region Although there are many resources for breast health in Western New York (WNY), they are mostly located in Erie County. However, many living in Erie County cannot access these services. The rural target communities are even more limited when trying to access these services. Three major issues have been identified as driving the barriers to access:  Availability of screening, diagnosis and treatment facilities, particularly in rural areas.  Transportation for women at all stages of the breast care continuum; rural and urban women alike are challenged in getting to places of service. Many resources in Erie County are located in the suburbs and are not easily accessible by public transportation for women living in the city. For the rural counties, there are no public transportation options for women.  Lack of patient navigation in target areas. Patient navigation services are a valuable resource for women transitioning through the continuum of care. There are few traditional patient navigation services in the area. Erie County has some patient navigation services through Catholic Health Systems, WNY Breast Health, and Roswell Park Cancer Institute, once a diagnosis has occurred. Wyoming, Allegany, and Cattaraugus Counties are severely lacking in these services; little to no patient navigation services or support and survivorship services exist. Another barrier is that the resources that are available are unknown by patients and providers, and can be difficult to access.

123 | Page Susan G. Komen® Upstate New York November 2017 The Affiliate has established relationships with the ECMC Lifeline Foundation mobile mammography coach, the Cancer Services Program (CSP) in Erie County, and many community partners. Currently the Affiliate collaborates with several partners to provide mobile mammography services, although most are located in the city. Moving forward, the Affiliate will work to create linkages with the mobile mammography coach and local partners in Allegany, Cattaraugus, and Wyoming Counties. The Affiliate plans to establish a relationship with the Livingston/Wyoming Cancer Services Program.

Public Policy The public policy environment affects the relationship between Komen Upstate New York and state and local agencies that provide access to breast health services for uninsured and underinsured women in the Affiliate service area. Another consideration includes the recently implemented Affordable Care Act (ACA) and how that may alter the landscape for breast health care. Women without private health insurance can receive breast health services through a complex network of federal, state and local agencies. Screening services are available through the National Breast and Cervical Cancer Early Diagnosis Program (NBCCEDP), also known as the Cancer Services Program in New York and the Healthy Women Program in Pennsylvania. Coverage for breast cancer diagnosis and treatment is available for Medicaid enrollees through the Medicaid Cancer Treatment Program (MCTP). Not surprisingly, given the complexity of the program’s enrollment process, many women in need of breast cancer services fall through the cracks in the system and do not receive the high-quality care that they need. Komen Upstate New York collaborates with the NBCCEDP programs and with health care providers directly to provide a safety net for women who are unable to access breast health preventive, diagnosis and treatment services.

Under the ACA, New York State has participated in the expansion of Medicaid coverage, which will allow more women to receive health insurance coverage through marketplace exchange programs. Pennsylvania did not expand Medicaid coverage. Although the safety net for breast cancer prevention and treatment may expand under the ACA in New York, Komen Upstate New York anticipates that the need to provide services for women who “fall through the cracks” in the system will persist in both states. This need is expected to be most pressing in minority communities that include historically underserved women. Furthermore, some providers of breast health services may decline to take Medicaid enrollees due to low reimbursement, resulting in reduced access to needed care for these women. In addition, the fragmented nature of the health care system will continue to create barriers for uninsured or underinsured women in need of breast cancer prevention and treatment services. These will continue to be focus areas for Komen Upstate New York to enable all women who are in need of breast health services to obtain them.

The Affiliate will continue to monitor actions of the federal and state governments with respect to health care and breast cancer and respond where needed. Continued emphasis will be placed on funding for the state NBCCEDP- Cancer Services Program (NY) and Healthy Woman Program (PA) —which does not reach all eligible women even with the funds currently appropriated; and on federal funding for critical cancer research programs through NCI, NIH, and DOD and federal funding for NBCCEDP. The Affiliate will also work to better inform and interact with its state and federal elected representatives to ensure they know of Komen activities and positions on breast health and breast cancer policy issues.

124 | Page Susan G. Komen® Upstate New York November 2017 Qualitative Data: Ensuring Community Input

Qualitative Data Sources and Methodology Overview

Central Region Methodology Key assessment questions and variables identified (e.g. access, utilization, quality) For the Central Region target communities, key assessment questions were similar for the urban populations of Monroe and Onondaga Counties, and unique for the rural agricultural population of Seneca County. Because breast cancer indicators for both late-stage diagnosis and death were elevated among Black/African-American women of Monroe and Onondaga Counties (Quantitative Data Report, Tables 2.1 and 2.4), the Affiliate questioned where in the continuum of care the system was failing these communities. Specifically, for urban woman of color the Affiliate wanted to learn about experiences that result in access barriers: knowledge, culture, health literacy, trust, geography, belief systems, and other barriers. Seneca County, sparsely populated and overwhelmingly white, had the highest breast cancer death rate in the 17-county Central Region. Here the Affiliate needed to examine where, when, and how women were accessing and receiving breast health services through the continuum of care.

To answer these questions, the Affiliate chose to interview key informants from among providers and support programs in the three communities, hoping to learn from those most knowledgeable about the women they serve. The Affiliate’s second qualitative method was an electronic survey that was sent to all providers in the target counties. Electronic surveys had themed questions similar to interview instruments, and also asked respondents about specific services, technologies, and patient populations. Community Health Assessments from the three counties (Monroe County Community Health Assessment, 2013; Morrow & Schultz, 2013; Onondaga County Community Health Assessment, Seneca County Community Health Assessment, 2013 and background literature were used to frame the approach and findings.

While focus groups would have provided valuable first-hand information from women at risk in target communities, the Affiliate lacked the necessary resources for adequate sampling and implementation of focus groups. Accordingly, equally powerful key informant interviews were the main qualitative method chosen to explore barriers to access and utilization that contribute to poor breast cancer outcomes. The Affiliate also supplements this information with data from survey findings. Interviews of informed and experienced stakeholders are appropriate for the Affiliate’s needs to understand attitudes, motivations, perspectives, and behaviors (United States Agency for International Development, 2011). Further, interviews are most useful to gain in-depth knowledge of issues and relationships among different cultural groups (Tashakkori & Teddlie, 1998). Electronic surveys were used in order to reach all providers in the Affiliate's target communities. With electronic delivery of the survey, the Affiliate expected to have faster responses, lower cost, and better data quality (Bergeson et al., 2013).

One individual conducted all 16 key informant interviews using the same instrument, but each informant was asked only questions pertinent to his or her position. Half of the interviews were done in person while visiting work places in the target communities, and the remaining were phone interviews. Responses were recorded by hand to allow respondents time to augment their answers with further clarifications. The provider survey included 37 questions and required 10 to 12 minutes to complete. Invitations to participate in the survey were sent to available 125 | Page Susan G. Komen® Upstate New York November 2017 provider e-mail addresses. Invitations included links to the survey which was managed via Survey Monkey. Respondents’ data were recorded electronically and retrieved through the Survey Monkey website.

Triangulation of findings was planned by including the same question themes in key informant interviews and the provider survey. Both instruments probed respondents with open-ended questions regarding life and health care situations that could result in access barriers to the continuum of care. Unlike Monroe and Onondaga Counties, in Seneca County the Affiliate relied only on key informant interviews and published sources since providers are almost non- existent there.

Sampling The population of interest in both Monroe and Onondaga Counties was Black/African-American women (all ages) who have high rates of late-stage diagnosis and death. This target population translates to inner city women of color in these counties. The city of Rochester, in Monroe County, has a Black/African-American population of 40 percent, compared to 3.6 percent in the rest of Monroe County (Monroe CHA). Similarly, the city of Syracuse, Onondaga County, is 29.3 percent Black/African-American, while the rest of the county is just 2.6 percent Black/African-American (Onondaga CHA). The Affiliate needed to find the barriers to breast cancer care experienced by these groups of urban women. In contrast, Seneca County, with a population of just 35,000, has just 1,607 Black/African-American residents (4.6 percent) and high breast cancer incidence and death (Seneca CHA). The Affiliate has had few associations with this isolated population. The Affiliate’s Community Profile examines where and how women of Seneca County obtain breast health services, and explores factors that could contribute to poor breast cancer outcomes.

Key informants were selected by purposive sampling (non-probability). For each of the three Central Region target communities, this sampling technique was intended to ensure representation from providers, agencies, CSPs, community advocates, and support programs (some Komen grantees). Attempts were made to have a similar mix of key informants in each community, and to include women of color when possible. Sources for the electronic questionnaire were simpler - this was a census of all providers in the target communities that were identified in the health system analysis template.

A diverse group of key informants was chosen both for their range of experiences and for comparison purposes. It was important for the Affiliate to evaluate the experiences of the target populations through the lenses of culturally sensitive navigators and supporters, those who understand the challenges and belief systems that influence behaviors surrounding health care utilization. At the same time, the Affiliate wanted to know how people who manage programs and treat patients interpret the same barriers. The inclusion of diverse key informants was successful in Syracuse and Rochester, where the Affiliate interviewed six key informants for each county. For Seneca County, three in-depth interviews were conducted with local county breast health providers - the CSP coordinator, the Seneca County case manager for CSP, and the patient advocate for cancer cases. The fourth Seneca County interview was an overview provided by the regional ACS Director. The Affiliate could not reach a women's health care provider at the new Federally Qualified Health Center (Ovid, Seneca Co).

126 | Page Susan G. Komen® Upstate New York November 2017 For the provider survey, the Affiliate’s rationale for sampling all providers in the target areas was to evaluate services offered, patient populations, and provider characteristics in order to reveal problems in breast health care delivery that may contribute to poor outcomes.

Ethics Consent forms were shown or read to each key informant, depending on whether the interview was in person or by telephone. Additionally, interviewees were told that all responses were only seen by the Community Profile committee; it wasn't necessary to respond to all questions; "unable to give an informed opinion" was acceptable; the Affiliate would later ask their permission to use any direct quotes; and their opinions would be compiled with others in the target area to generate the Affiliate profile. No key informant felt it necessary to sign or receive a copy of the consent form.

Anonymity for patients was not an issue. No patients were interviewed directly or surveyed, and no patient names were used in discussions or note-taking. The Affiliate’s interviewees were not concerned with anonymity; all freely gave names and contact information. Nonetheless, names were not shared beyond the Community Profile Team and Report. Interviewees were also told they would be re-contacted for specific permission to use a direct quote. Survey responses were submitted anonymously. It is not possible to link responses to any specific provider.

Confidentiality and protection of data followed customary procedures. Once interviews were transcribed, the digital forms were kept in a single password protected computer, and original written interview forms were eventually destroyed. Survey data were also password protected. Again, this data lacked the sensitive nature of personal case histories and experiences.

Qualitative Data Overview The format of original data for key informant interviews was hand-written responses to interview questions. These notes were jotted down during in-person and phone interviews, and they included all additional remarks offered by the persons who were interviewed. Voice recordings were not used. Key informant interviews lasted varying amounts of time. In-person interviews lasted over 1.5 hours and included much background information about organizations and programs. Phone interviews were much shorter, between 20 and 45 minutes each.

Survey responses were recorded electronically via Survey Monkey. The survey email was sent to providers in Monroe, Onondaga, and Seneca counties. Surveys required 10 to 12 minutes to complete. Two responses were received as of Jan 30, 2015, one from Monroe County, one from Onondaga County.

The rationale for using a "low tech" data management method for interviews was based on convenience, simplicity, quality, and comfort level for both the interviewer and interviewees (some also took notes). Hand written notes allowed more time for key informants to consider and amend responses. Thorough notes also provided a first pass at examining results for question clarity, sequencing, and response quality. For the survey, SurveyMonkey was chosen for the ease of use, expediency, consistency of queries, and data capture and analysis capabilities.

127 | Page Susan G. Komen® Upstate New York November 2017 Themes and categories for the qualitative research were anchored in the target communities selected, which in turn, were based on findings of the Quantitative Data Report. Women of color in both Monroe and Onondaga Counties had been the focus of the previous Central Region Community Profile Report. Salient themes from the Affiliate’s 2011 qualitative examination of these communities were again incorporated in key informant interviews and provider surveys, specifically questions about perceived access barriers related to knowledge, fear, belief systems, and life situations (Community Profile Report Komen CNY, 2011). Targeting sparsely populated Seneca County presented an opportunity to investigate rural barriers to access and how small communities such as this differ from urban populations.

New themes were generated in response to updated information, policy, and technology. The current Health Systems Analysis of provider locations present a focus for geographic accessibility questions. Other novel questions were based on the Affordable Care Act (ACA) and technology advances in mammography. New ACA policies regarding breast cancer screening, described in Public Policy Analysis, were used to question providers and agencies about early and expected changes in demand for their services. The gradual replacement of analog mammography with 2-D and 3-D digital technology generated questions regarding access to current "standards of care" for breast cancer screening.

Urban Black/African-American Women in Monroe County, NY Following implementation of the ACA, Monroe County CSP screening mammograms were down approximately 60 percent from the previous year, reflecting women who obtained insurance coverage. Monroe County CSP continues to try to capture the many at-risk women who do not participate in regular screening.

Racial disparities across the breast cancer continuum have been well documented (Bigby & Holmes, 2005). Blacks/African-Americans and other minorities have worse outcomes in screening, diagnosis, treatment, and survival. Several themes emerged from Key Informant Interviews regarding these disparities among Rochester's urban women of color. One survey was returned from Monroe County providers. Survey findings consistent with key informant findings are included below.

Health care delivery system Geographical access is an issue for Rochester's inner-city poor, who are concentrated in the city's "crescent of poverty" neighborhoods just north of the inner loop. Breast care services are not close at hand. Most providers are located far from poor neighborhoods, spread out around outer transportation arteries where public transportation is limited. Mammography screening was recently added in Rochester's inner city, but follow-up and diagnosis are still unavailable there. So far, new mammography services at the Anthony Jordan Center are under-utilized during daytime hours, and extended hours are limited. Stakeholders hope to expand mammography hours to better serve their community. Because many low-income women receive breast health services at public clinics, as indicated by the survey respondent, this would reduce several barriers to screening (e.g., inconvenience, lack of time) faced by these women.

Many key informants discussed shortcomings among providers, including lack of diversity, cultural differences, not taking enough time with patients to build relationships,

128 | Page Susan G. Komen® Upstate New York November 2017 and lack of professional competence for some screening providers. The requirement for a patient to have a physician to whom reports are sent adds to barriers, as well as the need for a clinical breast exam to precede screening mammography. For those without medical homes, CSP offers names of physicians who will accept patients. Although mammography screenings are covered by various programs, for follow-up diagnoses patients must pay insurance deductible fees, which have been prohibitive for some.

Rochester has recently experienced unprecedented consolidation of health services, which key informants fear will negatively impact the poor population. Inner city hospitals have closed, and Highland Hospital is the last city hospital that performs mammography screening. The Monroe County provider survey respondent indicated that his/her organization targets Black/African-American and Latinas in their breast health education efforts. They fund a mammography unit for an inner-city health clinic and do direct outreach to faith-based communities in Rochester.

Social determinants of health The broad category of "social determinants of health" covers many access barriers characteristic of Rochester's medically underserved women of color - poverty, poor education, violent crime, single heads of household, and unemployment or under- employment. Social problems in this very segregated area are acute. Incarceration rates are high. School results are poor, with 10 percent graduation rates among Black/African-American and Hispanic/Latino males. Some believe that Rochester's poor city schools - the worst schools in New York State, reported by one interviewee - are the root of segregated poverty. It follows that Rochester's health indicators reflect that "place matters"; cancer is Rochester's leading cause of death, and other chronic diseases such as hypertension, diabetes, and STDs are prevalent. One interviewee spoke of the large Black/African-American female population living with HIV, and a Rochester City School survey that found sexually transmitted disease (STD) prevalence of 40 percent in youth age 11 through 18.

Barriers to screening Many women in the target population simply do not have the means to care for their own health, or engage in any kind of prevention. "People are tired just getting through the day." Health expectations are low. A lack of health literacy contributes to barriers; women don't know what to do or why and they don't know about the mammography screening process, on top of confusion over guidelines. Fear may also be a barrier - fear of results, fear that mammography will hurt, fear of costs. But specific fears were less salient than other factors contributing to barriers. At-risk inner city women are in "no work, no pay" jobs, and they are affected doubly by geographic barriers that not only limit access but add expense by time requirements. Many of these barriers were also emphasized by the Monroe County survey respondent who listed lack of money or insurance, fear, transportation problems, lack of time due to other responsibilities as well as inconvenience of screening services. The provider also indicated that women do not prioritize their own health care.

129 | Page Susan G. Komen® Upstate New York November 2017 Poor breast cancer outcomes and late-stage diagnosis In addition to lack of regular screening, the transient nature of Rochester's urban population has made it difficult to track patients. Some women had been screened, but could not be located for follow-up. Addresses change, evictions occur, cell phones are out of service. Undiagnosed mental issues complicate the instability of the population. Once diagnosed, some patients choose to not follow medical protocol and instead use homeopathic approaches. Such decisions can be faith based, where some patients forego evidence-based treatments in favor of spiritual reliance.

Outreach Rochester has numerous outreach efforts to reach at-risk women. Radio, print, and bus advertising is widespread. Community events are used to distribute information and answer questions. The CSP strongly advocates one-on-one education with culturally sensitive mentors. These efforts are aimed at increasing health literacy and promoting self-efficacy. Periodic screening days are held, with several offered during October's Breast Cancer Awareness month. The provider survey respondent indicated that his/her organization provides educational materials in several languages other than English, including Spanish, Chinese, Laotian and Vietnamese.

Needs As one interviewee stated, "Once we get women in the system it's our job to keep them in." In order for annual screenings to take place, patients need continuous follow-up reminders (calls, postcards). Interviewees indicated that medical homes are essential to provide more advice from physicians. But with or without medical homes for at-risk women, increased funding for navigators is required to help with all the medical and non- medical needs associated with a breast cancer diagnosis. Even for less impoverished women, negotiating the unfamiliar continuum of care while managing daily life requires a lot of support help.

Urban Black/African-American Women in Onondaga County Preliminary data on CSP mammography screening showed a 30 percent drop in clientele during the first year of the ACA. This represents a shift in insurance status. Key informant interviews produced several themes that represent barriers to the continuum of care experienced by the target population in Onondaga County. One survey was returned from providers in Onondaga County. Commonalities with key informant findings are described below, where applicable.

Preventive care At the heart of barriers to care is the premise that prevention is seldom part of the medical culture in this community. Preventive care has no relevance to daily life, and is reserved for children, such as school requirements for vaccinations, and for pregnant women. Death is expected with a bad diagnosis. Without routine medical visits, health care is only episodic, limited to crises, and primary care becomes "urgent care." The community has low utilization of all preventive practices.

Health literacy and screening mammography Health Literacy was seen as having a huge impact on breast care, where "no knowledge leads to only fear." Specific fears about screening mentioned by informants included fear of a painful procedure, results, disfigurement, death, care for family, and mistrust of 130 | Page Susan G. Komen® Upstate New York November 2017 the medical system. Without knowledge, women go to non-scientific places for information and guidance. Some think screening is "asking for cancer" and are misinformed about their own susceptibility. Others think screening is unnecessary because they have no breast cancer in their family. In a similar regard, the provider respondent from Onondaga County indicated that women think they are too young or too old for screening, or that they don’t think it is necessary. Related to prevention attitudes, women do not have the knowledge that breast health services are normal acceptable practices, not just for affluent women. This results in waiting for "signs and symptoms" before taking action. With health literacy comes empowerment to "be your own best advocate" and to "have the right to question."

Life challenges Many hurdles overwhelm poor women and result in their not prioritizing their own health, which was identified by the Onondaga County survey respondent as a barrier to accessing screening services. Women cannot leave low paying jobs to receive mammograms, both due to scheduling and lack of pay for the time needed. Even small parking fees are prohibitive. Crime, lack of money for essentials, safety and security, STDs, dental issues, and nutrition are constant concerns and challenges.

Health policies and health care system One barrier in mammography health policy is the requirement for a medical home for patients. This involves more planning than is customary for many. Also Medicaid care options are not seen as comparable to care provided by private practices. Some clients have described poor attitudes of medical professionals. Many Onondaga County women rely on community medical services for funding, and use public clinics for routine breast health services as indicated by the survey respondent.

Poor outcomes and late-stage diagnosis Poor outcomes were often attributed to women not having relationships with primary care physicians. These woman may need "signs and symptoms" in order to take action. Further, some patients do not return after initial findings. One suggestion was that they lack the comfort level and support system to proceed to next steps. Typical support systems are family, elders, and faith communities.

Faith-based medical beliefs can contribute to poor outcomes when they are fatalistic. Some believe their fate is solely in God's hands, and this cannot be changed. A belief that the only medical authority is spiritual results in remarks (following a questionable mammogram) like: "Let me pray about this and I'll let you know what I'm going to do," or "Survivors are cured by God, not by the medicine."

Health information sources The primary care physician is considered the best source for health information. Small groups and one-on-one communication were recommended as the best methods to receive breast health information. Cultural similarity was not deemed to be as important as having a credible resource who has a positive relationship with at-risk women and who knows and respects cultural factors. The most common sources of health information were word of mouth (friends, family, peers), media campaigns (TV, radio,

131 | Page Susan G. Komen® Upstate New York November 2017 billboards), churches, community groups, and life events that bring women into the health system.

Needs Key Informants offered many suggestions to help improve breast care delivery and outcomes. They expressed a need for more collaboration and information sharing among Onondaga county providers and supporters. Funding is needed to increase patient navigation, an effective way to help women receive scheduled mammograms, and for screening days, which are labor intensive. More community outreach individuals to help overcome cultural differences were suggested. Lastly, increased participation with faith-based organizations to reach more women was recommended. Older women are more connected with faith communities than younger women, but faith groups are trusted and reliable sources of information and support.

Seneca County Key informants shared their opinions about breast health care delivery, utilization, and access barriers. Five themes for Seneca County emerged from interviews.

Mammography screening Many rural women have no primary care physician, and they are most likely to not receive screening mammograms, or are very off-schedule for screening. This was evidenced by the number of women with no medical homes who were recently screened through CSP - many had not seen a primary care physician in years. Other major reasons believed to contribute to lack of screening include poverty, social isolation, and transportation, followed by financial problems, lost insurance (also enrolled at CSP), procrastination, forgetting, and not prioritizing health needs. Poor, socially isolated women may use health services only for "the crisis of the day." Some older residents may refuse to take advantage of eligibility-based programs, which they consider to be "hand-outs."

The best encouragement for timely breast cancer screening appears to come from a woman's physician; additional motivators are outreach workers, word of mouth, and knowing others who have been diagnosed. Although appointments are required for screening mammograms, the CSP provides physicians for those who need them (NYS law).

Breast health services used by Seneca County residents Key informants concurred that services were mostly received in the Rochester area from large multi-center providers and hospitals. Southern Seneca county residents were also likely to receive treatment in nearby Ithaca. Problems reported along the continuum of care were scheduling, inflexibility of large practices and physicians who do not accept Medicaid payment.

Breast health education and messaging Outreach workers use community events in Seneca County to get out messages about the need for mammography screening and its availability to all women. The CSP also advertises through radio spots and bus banners.

132 | Page Susan G. Komen® Upstate New York November 2017 Late-stage diagnosis Many of the same factors that contribute to lack of screening also play a role in late- stage diagnosis. Informants cited no medical cycle, lack of knowledge, denial, finances, and religious reasons as contributors to breast cancers being detected in later stages. One provider had concerns about general women's health care among the growing Amish and Mennonite communities in southern Seneca County. Homeopathic treatments had been chosen over standard medical care for treating breast cancer, without success. In these communities, men are believed to make health care decisions. The informant believed women from these enclaves have begun utilizing CSP screening services, but as with other medical situations such as child birth, they rely on community members who have experiential training only. These religious sects are exempt from purchasing health insurance on the New York State (NYS) health insurance exchange.

Collaboration As a small area where most providers in a three-county area know each other, interviewees found that collaboration for breast health services was very effective. Providers were flexible and accommodating to help with unusual requests and atypical situations.

The Affiliate's Central Region Community Profile Team was originally skeptical about Seneca County's breast cancer statistics due to its small population and wide uncertainty in estimates, such as death rates. Seneca County's recent 2013 Community Health Assessment (Seneca CHA) details the full spectrum of health, behavioral, and social challenges here. A few examples include the highest age adjusted obesity rate in New York State at 37.5 percent; smoking rates over 40 percent higher than the state level, with no decrease since 2008; and lack of fluoridated water in a county with the second fewest dentists per person in the state. Seneca County's per capita income is 31 percent below the New York State average, and the population is aging - the median female age is now 43.3. Not surprisingly, Seneca County has been designated a federal Health Professional Shortage Area (HPSA). So breast health care in this rural county is framed by a range of other urgent and intractable challenges.

Northeastern Region Due to limited resources, qualitative data collection was not completed for the Northeastern Region target communities.

Twin Tiers Region Methodology The Affiliate constructed a short (10 question) survey and interviewed key informants at several health care providers both within and outside Tioga County, NY, to best evaluate the availability of breast health services. The Affiliate 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.

To best evaluate the experiences of breast cancer survivors in Bradford County, Pennsylvania, the Affiliate constructed a short (11 question) survey and interviewed key informants at several Bradford County health care providers. The Affiliate chose to utilize a survey in an attempt to reach as many survivors as possible in this predominantly rural county. As the key informants

133 | Page Susan G. Komen® Upstate New York November 2017 are present and working with breast cancer patients on a daily basis, the Affiliate values their insights into the conditions facing those affected by breast cancer throughout the continuum of care. Together, these methods enabled the Affiliate 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 the Affiliate could have achieved had it limited the inquiry to only one of these groups.

Survey The Tioga County, NY survey contains a variety of questions, including open-ended questions, evaluating respondents’ experiences along the entire continuum of care. In addition, questions concerning the distance traveled for diagnostic testing and/or treatment and how the respondents travel to access medical care are included.

The Affiliate distributed several copies of the survey along with a promotional flyer to all health care providers in Tioga County plus the County Health Department and the operator of the only mobile mammography service that operates within the county. In addition, the survey is available as a downloadable pdf from the Affiliate website, and as a downloadable pdf from the October and November 2014 Affiliate newsletters. Respondents could either mail completed surveys or email them to the Affiliate, and a self-addressed-stamped envelope was included for the return of surveys from all health care providers and the County Health Department.

The Bradford County, PA survey contains a variety of questions evaluating respondents’ experiences along the entire continuum of care. For Yes/No questions assessing barriers along the continuum, respondents were invited to explain the barriers/problems they encountered. In addition, the survey contains several open-ended questions about the support, resources and assistance available at various points along the continuum. Most importantly, survivors were asked whether and when survivors’ activities would be of interest. Finally, non-identifying demographic information (e.g., age, age at first diagnosis, etc.) is included.

The Affiliate distributed several copies of the survey along with a promotional flyer to all health care providers in Bradford County plus the county health department. In addition, the survey was available on SurveyMonkey, as a downloadable pdf from the Affiliate’s website, and as a downloadable pdf from the October and November 2014 Affiliate newsletter. Respondents could either mail completed surveys or email them to the Affiliate, and a self-addressed- stamped envelope was included for the return of surveys from all health care providers and the county health department.

Key Informant Interviews A representative from the Affiliate telephoned health care providers in Tioga County, the head of the regional office of the New York Cancer Services Program, and the person in charge of the mobile mammography unit.

A representative from the Affiliate telephoned health care providers in Bradford County. Questions concerning barriers to care, interactions with survivors and any requests and/or complaints received from survivors were noted.

134 | Page Susan G. Komen® Upstate New York November 2017 Sampling The population of interest in Tioga County, NY is all women over 40 and all women who have sought or required breast health care. To reach these women, the Affiliate distributed copies of the survey along with a promotional flyer to all health care providers in Tioga County plus the operator of the mobile mammography unit. In its October and November 2014 newsletters, the Affiliate invited women resident in Tioga County to download a copy of the survey from the Affiliate’s website. The survey was available on the home page of the Affiliate’s website from mid-October 2014 through the end of the year.

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, allowed the Affiliate to assess the availability and accessibility of breast health services in Tioga County.

The population of interest in Bradford County, PA is all breast cancer survivors, including survivors who received treatment outside the county. Given the low population generally in Bradford County and the even smaller number of survivors, no further constraints were placed on the group. To reach survivors, the Affiliate distributed copies of the survivor survey along with a promotional flyer to all health care providers in Bradford County. In its October and November 2014 newsletters, the Affiliate invited survivors to complete the survey online at SurveyMonkey or download a copy from the Affiliate’s website. The survey was available on the home page of the Affiliate’s website from mid-October 2014 through year-end, a period of over two months.

The use of a survey and key informant interviews with breast health care providers, including the sole breast cancer patient navigator in Bradford County, allowed the Affiliate to compare and contrast the different perspectives of breast cancer survivors in Bradford County, PA and better assess the additional services, if any, of interest to this population.

Ethics The Affiliate made clear in the flyer accompanying the survivor survey distributed to health care providers within the county and in all articles and press releases inviting participation, the survey is designed and intended to be anonymous. In no circumstances has identifying information been requested. If, however, a respondent chose to self-identify, either through the use of a return address label on a survey mailed to the Affiliate or by emailing the survey and including identifying information within the email, the Affiliate removed any identifying information prior to processing the survey.

Given the small number of health care providers generally active in Tioga County and Bradford County and in particular working in breast health, the identities of key informants may be known by readers of the Community Profile. In no case, however, will any key informants be identified by name nor by organization.

The Affiliate did not utilize outside consultants nor sought volunteer help in the preparation of the Community Profile, thereby ensuring the confidentiality of data. All data will remain the property of the Affiliate and will ultimately be stored in the Affiliate office.

Qualitative Data Overview For both Bradford County, PA and Tioga County, NY, Twin Tiers Region Community Profile Team compiled the surveys returned. Answers to each question were aggregated and 135 | Page Susan G. Komen® Upstate New York November 2017 assessed. Given the small sample sizes for each county due to their low populations, this process could be completed easily using Excel spreadsheets. Notes of all telephone interviews with key informants have been retained. These notes were analyzed to determine common themes. Once the surveys from each county were analyzed, the results were compared with the themes identified in the key informant interviews.

In Bradford County, PA, the common themes identified were that  Breast health services along the entire continuum of care were less accessible in the mountainous southern sections of the county than in the northern communities, such as the towns near Sayre, where the region’s largest health care provider, Guthrie, is located, and that  Breast Cancer survivor programming would be of interest throughout the county.

Of particular interest to survivors would be  A local supplier in southern Bradford County for lymphedema sleeves, bras and other materials, including advice,  Fitness classes, and  Breast cancer support groups.

More breast cancer education events, particularly in the less-accessible southern communities of Bradford County, are also of interest.

In Tioga County, NY, the common themes identified were that  There are almost no breast health care services within Tioga County;  Although major health care centers are available in the contiguous counties and although a mobile mammography van operates a schedule of periodic visits to several Tioga County locations, transportation, especially from the more rural northern communities of the county, remains a barrier to care;  More breast cancer education events, particularly in the rural northern communities of the county, are also of interest.

Western Region Methodology The quantitative and health services analyses revealed major barriers in engaging women throughout the breast cancer continuum of care. The most striking concerns were the high rates of late stage diagnoses in our target communities, the limited community resources available for education, screening, and treatment, and the barriers to accessing cancer care. Barriers identified included transportation, costs of screening and treatment, and care coordination for those diagnosed with breast cancer. Based on these findings, the Affiliate conducted an in- depth qualitative assessment that focused on three objective areas: 1) access to cancer care across the continuum of care, 2) barriers to screening and early detection, and 3) availability of support services.

The Affiliate was thoughtful and strategic about the groups of respondents they would approach for the qualitative assessment. To best assess the objective areas, the Affiliate included primary care providers, cancer care providers, community based organizations, women 40 and older, and breast cancer survivors. It was important to receive input from those who had perspective 136 | Page Susan G. Komen® Upstate New York November 2017 on the various stages of the cancer care continuum. The Affiliate was also conscientious of the unique demographic communities that reside in the target communities. The City of Buffalo, located in Erie County, has a large population of low-income African American and Latina women, as well as a growing community of refugees from over 70 different countries. Cattaraugus and Allegany counties are home to several territories belonging to the Seneca Nation of Indians (SNI), and some of the largest Amish settlements in New York.

To allow for a comparison of differing perspectives and experiences regarding the breast cancer continuum of care for women in each county, the Affiliate utilized key informant interviews and focus groups as the primary data collection methods. A set of predetermined questions were used to guide the conversations. Questions were selected to elicit information across the three identified content areas and were appropriate for the experience of each informant group. The same questions were used across all target areas for each informant group in order to make comparisons.

All sessions were led by a research team member from the Department of Family Medicine at the University at Buffalo. Each participant was provided with consent documentation which was reviewed prior to the start of each focus group and interview. A guide of questions were followed to facilitate focus groups and interviews. Women 40+ and survivors completed demographic surveys at each session. Komen giveaways were provided for all focus groups members. All interviews and focus groups were audiotaped and transcribed for analysis. Two reviewers independently coded each transcript. Codes were grouped into themes and cogent quotes were identified. The codes were reviewed for agreement; discordant responses were discussed and those codes were agreed upon.

Sampling Primary Care Providers The Affiliate selected primary care providers (PCPs) with whom they had a personal rapport to enhance participation. Providers were contacted by e-mail and phone, and asked if they were willing to participate in an interview. A research team member would schedule a convenient time to conduct the interview, although most times providers were interviewed on the spot. If a selected provider was not interested in participating, the Affiliate reached out to a different provider at the practice. Primary care providers included family physicians, internists, and OB/GYNs. The Affiliate recognizes the importance of primary care providers as the gateway to screening mammography. Primary care providers conduct clinical breast exams and refer patients for screening mammography, and are often the first line of defense for patients who present with symptoms. They also help navigate and follow up with patients who have been diagnosed.

Providers were purposefully sampled to represent various practices who serve the target communities; the interview questions selected are shown in Box 4.1. Practices within the target areas were identified, and providers within those practices were recruited to participate.

Key informant interviews were selected as the data collection method for primary care providers recognizing their busy schedules and limited availability. Interviews were conducted in person or by telephone based on the convenience of the provider.

137 | Page Susan G. Komen® Upstate New York November 2017 Cancer Care Providers Box 4.1 Questions: Primary Care Providers Striving to gain diverse input, providers were purposefully sampled based on type of service they 1. What breast health educational provide and the location of their practice. Cancer resources are available to the women care providers (CCPs) included anyone who you care for? 2. From your perspective, what barriers provides direct care to women throughout the cancer prevent women 40 and older that you care continuum including but not limited to care for from getting mammograms? oncologists, mammography technicians, 3. What role do you plan in your patient’s radiologists, and surgeons. There is a diverse range care once a breast cancer diagnosis is of providers that women interact with between made? 4. What role do you play in the follow-up screening and treatment, and the Affiliate care of your patients that are breast recognized the importance of getting input from cancer survivors? these various providers. 5. ____ County is shown as having a high rate of late-stage diagnosis. What The questions selected are shown in Box 4.2. factors do you think might contribute to Practices within the target areas were identified, and this high rate of late stage diagnosis? 6. Do you have any concerns regarding providers within those practices were recruited to breast cancer screening guidelines? participate. The Affiliate selected providers with whom they had a personal rapport with to enhance Box 4.2. Questions: Cancer Care Providers participation. Komen volunteers were willing to 1. What resources are available for suggest providers that might participate. Practices women with breast cancer in ____ were contacted by e-mail and phone, and asked if a County? 2. What barriers do you face in providing provider within their practice was willing to quality care to women diagnosed with participate in an interview. A research team member breast cancer? scheduled a convenient time to conduct the 3. Do you have any concerns regarding interview, although most times providers were breast cancer screening guidelines? interviewed on the spot. If a selected provider was 4. What barriers do you face in not interested in participating, the Affiliate reached maintaining follow-up care for breast cancer survivors? out to a different provider at that practice. 5. ____ County is shown as having a high rate of late-stage diagnosis. What Key informant interviews were selected as the data factors do you think might contribute to collection method for cancer care providers, this high rate of late stage diagnosis? recognizing their busy schedules and limited availability. Interviews were conducted in person or by telephone based on the convenience of the provider.

Community Based Organizations Community based organizations (CBOs) were solicited based on their first-hand knowledge about the community and its residents, as well as the impact that breast cancer has had on the individuals the organization serves. Community based organizations were diverse and included but were not limited to Health Departments, Cancer Services Programs, breast cancer networks and coalitions, and support groups. These organizations provided a critical role in facilitating navigation through the cancer care continuum, providing education about cancer risk reduction, screening and treatment, and offering support for those with a diagnosis.

138 | Page Susan G. Komen® Upstate New York November 2017 CBOs were purposefully sampled based on type of Box 4.3. Questions: Community Based organization and the role it plays in the cancer care Organizations continuum. Contacts were chosen from the organizations listed in the health services analysis 1. Where do women in your community template. Again, the Affiliate wanted to obtain diverse get information on breast health and experiences; the questions selected for CBOs are breast cancer screening? 2. In your opinion, what are some factors shown in Box 4.3. as to why women don’t get mammograms? b. What are some Key informant interviews were selected as the data factors as to why they do get collection method for community based organizations mammograms? due to busy schedules and diverse locations. 3. What challenges do you face in helping women through the continuum of Interviews were conducted in person or by telephone cancer care process from education based on the convenience of the participant. and screening through to follow-up? 4. What are some strategies that you’ve Women 40 Years of Age and Older used to engage women in their breast Women 40 years of age and older were recruited from health? all the Affiliate’s target areas for the qualitative assessment, specifically from the City of Buffalo in Erie Box 4.4. Questions: Women 40 years & older County and the three rural counties of Cattaraugus, 1. How has breast cancer affected your life? Allegany and Wyoming. The Affiliate wanted to assess the views of women without breast cancer to assess 2. Where do women in your community get barriers they may face in accessing care, particularly in information on breast health and breast regards to early detection. A combination of snowball cancer screening? and purposive sampling were used to recruit 3. Mammograms are a screening test that participants for the focus groups. The Affiliate targeted can identify cancer. Why don’t women get existing groups and posted flyers in doctors’ offices mammograms? and community based organizations. As a means of 4. What goes through your mind when you recruitment, flyers were passed out at community learn that someone has been diagnosed events and venues, safety-net clinics, government with breast cancer? assistance programs, support groups, hospitals, 5. What community supports are available churches, and public establishments. to women who have been diagnosed with breast cancer in ____ County? i.e. Support Focus groups were selected as the data collection Groups, Patient Navigation, etc. method because they are often a valuable platform for individuals to share their experiences while hearing from others who may have similar experiences. The groups were held downtown at the offices of the Profile Team or in community venues that were easily accessible for community partners. A short demographic survey was completed by each participant, and Komen giveaways were provided for all focus groups. The focus group interview questions can be found in Box 4.4.

Breast Cancer Survivors Breast cancer survivors were recruited from all the Affiliate’s target areas for the qualitative assessment, specifically from the City of Buffalo in Erie County and the three rural counties of Cattaraugus, Allegany and Wyoming. The Affiliate wanted to assess the experiences of survivors, specifically the challenges they faced throughout the cancer care continuum. A combination of snowball and purposive sampling were used to recruit participants. The Affiliate targeted existing groups and posted flyers in doctors’ offices and community based

139 | Page Susan G. Komen® Upstate New York November 2017 organizations. Flyers were passed out at community events and venues, safety-net clinics, government Box 4.5. Questions: Survivors 1. What barriers did you face in getting assistance programs, support groups, hospitals, screened for breast cancer? churches, and public establishments as a means of 2. What barriers did you face getting recruitment. treatment for breast cancer? 3. What was the worst experience you had Focus groups were selected as the data collection during your treatment? method because they are often a valuable platform for 4. What was the best experience you had during your treatment? individuals to share their experiences while hearing 5. Where do women in your community from others who may have similar experiences. The get information on breast health and groups were held downtown at the offices of the breast cancer screening? Profile Team or in community venues that were easily 6. What would make it easier for women accessible for community partners. A short to access breast health and screening demographic survey was completed by each resources? 7. What resources were available for you participant, and Komen giveaways were provided for to help you through your treatment? all focus groups. The focus group interview questions 8. What would have made your diagnosis can be found in Box 4.5. and treatment experience better? What would be on your wish list for other Special Considerations women being diagnosed with breast The Affiliate gave special considerations to the special cancer? populations existing in the target communities; these populations include refugees from over 70 countries, the Seneca Nation of Indians, and the Amish. Challenges presented such as language and cultural barriers prevented involving these groups in the assessment. In order to include perspective of these communities, the Affiliate asked providers and community based organizations who serve these special populations to provide general responses and then to give perspective on these specific groups.

Cattaraugus and Allegany Counties often share resources and women may travel between counties to access services. Some providers and community based organizations were asked to provide insight into both counties and were therefore counted as an informant for both counties (Table 4.1).

Wyoming County shares many resources and services with adjacent Livingston County which is not in the Affiliate’s service area. Identifying primary care providers within the boundaries of Wyoming County proved challenging. No cancer care providers exist in Wyoming County.

Table 4.1. Overall Participation Primary Cancer Participant Type Care Care CBOs Women 40 years + Cancer Survivors Providers Providers Key Informant Interviews Focus Group Data Collection Method # Participants # Part. # Group(s) # Part. # Group(s) Allegany 1 3 6 N/A 9 1 Cattaraugus 4 3 7 4 1 9 1 Erie 12 8 12 13* 3 6 3 County Wyoming 1 2 N/A N/A N/A *It is important to mention that three men participated in a focus group in Erie County for women 40+. This focus group was conducted during a regularly scheduled community group meeting. The men were invited to participate in the discussion, although they were not included in the numbers for the focus group in the chart. They contributed considerably to the discussion, providing valuable insight and personal experiences of loved ones affected by breast cancer.

140 | Page Susan G. Komen® Upstate New York November 2017 Ethics Each participant was provided with consent documentation which was reviewed prior to the start of each focus group and interview. Members of the focus groups were asked to maintain the confidentiality of the group. All information obtained from the interviews/focus groups was kept confidential. All materials were kept locked in a cabinet and electronic data was saved in a password protected folder on the research associates computer.

Qualitative Data Overview The Community Profile Team transcribed, independently read, and coded all key informant interviews and focus groups. From that data, themes/categories were generated. Several common themes reoccurred often from the key informant interviews and focus groups conducted in each target community. The results were compiled for each group in each target area; comparisons were made across groups to identify similarities and differences. Comparisons were also made across counties for each group.

Allegany County In Allegany County, many of the key informant interviews, and one focus group, were interchangeable with Cattaraugus County due to the fact that both counties share many services between one another. In many instances, key informants’ feedback was applicable to both counties and the experiences of women in focus groups represented the experiences of average rural women when seeking breast health resources. A single focus group was held with breast cancer survivors. The coordinator of the Cancer Services Program of Allegany and Cattaraugus County assisted with the scheduling with a breast cancer support group held at the Radiation Oncology Clinic associated with Olean General Hospital in Olean, NY. A total of six Key Informant Interviews were conducted.

Primary Care Providers Access to cancer care across the continuum of care One provider was interviewed in Allegany County. Many people in this county do not have a primary care doctor. This limits their access to services. This informant noted transportation and financial constraints as barriers to access cancer care services. The cost of services is an issue for many. The lack of reliable transportation and the cost associated with the transportation such as gas or the affordability of public transportation was of concern to the informant.

"A lot of people in the area that just don't have any money… five dollars in gas is a big deal to get to their appointments.”

Barriers to screening and early detection This informant noted some barriers to screening for women in Allegany such as patients not making their appointments or waiting too long and not coming into the office until something is really wrong.

Availability of support services Lack of knowledge was discussed as a barrier as was lack of community resources within the county. It was stated that women receive educational information from their primary care providers and hospitals. However, there is a general lack of understanding of screening guidelines and a general lack of education. The primary care provider also noted their own inexperience with referring to specialists for cancer. 141 | Page Susan G. Komen® Upstate New York November 2017

"There is a little confusion now what the latest recommendation is… There's bodies of organizations that recommend screening only based on risk factors. And other organizations yearly mammograms is what's recommended. So there's a lot of confusion there, what the best treatment." Cancer Care Providers

Access to cancer care across the continuum of care Key informants noted issues with insurance, particularly for those who are uninsured or underinsured. Cancer care providers have heard from women that they did not seek care because of their insurance status. They work closely with Cancer Services Program and a local community based organization to access resources such as gas cards and financial assistance with co-pays. Cost of co-pays is a major concern for women living in Allegany County. They do not want to start treatments until they know exactly how much it is going to cost. Unfortunately, some patients take that into consideration when making their decision on whether or not to receive treatment.

Allegany County is a relatively rural and impoverished population. Transportation is a major barrier to access. If women do not have a reliable means of transportation they do not have ways to access what they need. For many women in this area the locations for screening and treatment are often inconvenient and too far to drive. One local hospital offered free mammograms just for the month of October during Breast Cancer Awareness month.

Barriers to screening and early detection Informants noted challenges in communicating with patients as a potential barrier to screening. Such a rural and transient population with many individuals navigating in and out of the healthcare system makes it difficult to keep in touch with women to emphasize the importance of breast health.

Availability of support services Although there is not a lot of educational resources in Allegany County, informants work closely with a local community based organization to provide educational materials to the women they care for.

A large Native American population resides in Allegany County. Informants work pretty well the Native American Community. The reservation secures transportation and covers co-pays for Native women seen at their office.

Community Based Organizations Access to cancer care across the continuum of care Cost was a major issue discussed for women accessing care in Allegany County. However, the cost of transportation and its impact on a woman’s ability to access breast health care was emphasized. One solution suggested by one key informant was to work with providers to offer all the services in one day, like a screening day event. Traveling also ties in with these issues, as many people lack reliable transportation, and the area is spread out.

“if they have insurance and they know their insurance will pay for the mammogram, without them having a huge copay or having to meet a huge

142 | Page Susan G. Komen® Upstate New York November 2017 deductible before the mammogram… just simply having that knowledge make them feel comfortable in having the procedure done.”

One informant acknowledged the lack of treatment options available to women in Allegany County. They may have screening or some diagnostic procedures completed, and then choose not to have treatments when they find they have to travel long distances for treatment. There are not any treatment facilities offered in Allegany County. The utilization and availability of the mobile mammography coach was also discussed as an asset to the Native Americans on the reservation, but this does not resolve the issues of the lack of treatment services.

Barriers to screening and early detection The health system was noted as an issue in Allegany County. One informant discussed how changes in healthcare policy could be both an asset and a barrier to screening. Lack of prioritization of mammography was another potential barrier noted by informants. This group gave quite a bit of insight into why women do get screened as opposed to why they do not. Having a family history, or knowing someone who was diagnosed with breast cancer was thought to be a prompt for women to get screened. An abnormal finding was considered further motivation for women to maintain annual mammography.

Encouragement from a primary care provider was an important asset to maintaining annual breast health screening. It was also mentioned that some women were just health conscious and active in their healthcare, therefore were cognizant of being screened every year. On the other hand, factors such as procrastinating or just putting it off, and not having time were notable barriers. Some women wait until something is really wrong prior to seeking care. Due to these barriers, many women may find it hard to find time to get screened.

"I think a lot of people in this area do not seek primary care.”

"They wait until it's too late. Or they don't come to the office until something is really wrong.”

Availability of support services Education and knowledge was primarily discussed as a necessity to getting women screened and in proper treatment. Key informants stated that women received breast health and breast cancer information from their primary care provider, community based organizations including the health department’s family planning clinic and cancer services program, as well as from other women or survivors. However, a couple of barriers were noted, such as a general lack of education on the part of the patient and the provider. One key informant noted his inexperience with referring for breast cancer. It was also noted that women may be lacking information, despite the numerous places from which to get information.

The mobile mammography coach was considered an asset for the Native Americans in the area. However, a cultural norm of fearing to leave the reservation was also identified as a barrier. Because of this fear, the mammography bus would become even more of an asset for this population.

143 | Page Susan G. Komen® Upstate New York November 2017 "There is a little confusion now what the latest recommendation is… There's bodies of organizations that recommend screening only based on risk factors. And other organizations yearly mammograms is what's recommended. So there's a lot of confusion there, what the best treatment." Survivors

Breast Cancer Survivors The demographics and socioeconomics of the Allegany County breast cancer survivors can be found in Figure 4.1.

Average Age of Focus Group Stage at Diagnosis of Focus Group Participants Survivors (N=9) Participants Survivors (N=9)

20% 22% 30% Stage 1 33% 40-49 Stage 2 50-59 Stage 3 60+ 30% Stage 4 20% 45%

Race/Ethnicity of Focus Group Average Income of Focus Group Participants Survivors (N=9) Participants Survivors (N=9)

$10,001-$20,000 11% 22% $20,001-$30,000 White More than 45% 22% $50,000 Don’t know 100%

Figure 4.1. Allegany Survivors Focus Group Demographic and Socioeconomic Factors

Access to cancer care across the continuum of care Survivors in Allegany County identified several barriers they face when it came to accessing cancer care across the continuum of care. Overall, responses of survivors were comparable with those of the other target groups. Survivors found treatment options were located in areas that were inconvenient to access, having to travel between Buffalo or Rochester by car. For many survivors, the cost of screening or treatment was a barrier, especially when it came to those who are underinsured/uninsured. For those with insurance, copays and high deductibles were a source of stress, and unfortunately played a role in the care they received.

144 | Page Susan G. Komen® Upstate New York November 2017 “Yeah if you are under long term care, and you are going right along, I mean the copays add up and if you don’t have a lot of money, we really need help in this area.”

Survivors also mentioned that transportation was a contributing factor as to why women were not being properly screened and treated. There isn’t a public transportation system in the county, and options for shuttles and cab services are very limited. Overall, there was a lack of availability of services. Survivors were very vocal when it came to discussing support and survivorship. Most of them cited that they only knew of one support group in the target area, and that there were essentially no navigation services for women when diagnosed.

“When a woman is diagnosed with breast cancer, immediately she needs to know a lot of things, she has a lot of questions, she is very frightened.”

“When they first called and told me I had cancer, you go into brain freeze and you really don’t know where to go and were to start and I really think that there should be something, like you have to find the agency first, and if you don’t know where to start…then there should be a pamphlet or something out there that says this is what you need to do first, second, third, to help you get started to know where to go.”

Barriers to screening and early detection Survivors had great insight when it came to barriers to screening and early detection. Fear was a prominent theme; fear that the procedure is painful and uncomfortable, and of being diagnosed with breast cancer. Another theme was physician and health system issues. For some survivors, coordination of care was lacking, especially once they were diagnosed. They felt that communication between doctors’ offices and specialists was sometimes absent. In terms of priority of mammograms, survivors felt that it was hard for women to get screened because they were concerned with other aspects of life such as work and their family.

Medical complications were another theme with survivors, primarily with the impact that breast cancer has on mental health and emotional well-being, especially during and after treatment.

Availability of support services When it came to availability of support services, survivors said that they received education on breast health primarily from their doctors. They also mentioned CBOs as a source, specifically the Cancer Services Program as being integral to women in Allegany County when it came to financial assistance and education. Survivors felt very strongly about the education from other survivors, and have found that support to be very important in their breast cancer care. Overall, survivors felt strongly that education should start earlier, and that more young women need to be educated on knowing their bodies and what is normal. Overall, survivors felt there was a lack of awareness and education for women in this target area, especially when it comes to treatment and its side effects, and where women can go for emotional support.

145 | Page Susan G. Komen® Upstate New York November 2017 “Somehow we have to get out the message that there is help and there is a starting point, and I think that is where we need to help, is to let women know what to do and what’s your starting point.”

Table 4.2 provides a comparison of themes across Allegany County. Common themes across all populations of interest are knowledge, health system issues and priority level of getting a mammogram.

Table 4.2. Comparison of themes across Allegany County THEMES POPULATION Health Access Priority of Medical OF INTEREST Fear Knowledge System to Culture Mammogram Complications Issues Services PCPs x x x x CCPs x x x x CBOs x x x x x Survivors x x x x x x

Cattaraugus County Primary Care Providers Access to cancer care across the continuum of care Primary care providers (PCPs) identified several barriers in terms of access to cancer care across the continuum of care. Providers mentioned that locations for screening and treatment are limited in Cattaraugus County, and often inconvenient for women to get to; it is common for women to drive outside the target area. Issues with insurance are also a barrier to accessing services, especially for those women who are uninsured or underinsured. For those that have insurance, they face challenges such as high copays and high deductibles, and often find themselves stuck in a gap of care.

“What we see basically is women don’t have insurance, even though that’s changing, and without insurance they don’t think they’re eligible for any services, so they neglect their health”

Reliable transportation was another common barrier women face in accessing breast health services as public transportation does not exist in Cattaraugus County, and all the screening and treatment sites are located in a central location in Olean, NY.

Barriers to Screening and Early Detection Several themes were identified when it came to barriers to screening and early detection. Providers mentioned that fear can keep women from being screened, especially the fear of having a positive finding.

Another barrier that was identified when it came to screening were physician and health system issues, primarily the lack of primary care physicians among women in Cattaraugus County. There is also a high turnover rate among physicians.

“A lot of people in this county don’t have primary care physicians; they really don’t have that gateway to care sometimes. And then sometimes their primary care providers leave. I think we have a pretty high turnover rate of primary care

146 | Page Susan G. Komen® Upstate New York November 2017 physicians. So when they leave women kind of drop having a primary care provider, and really don’t seek further care or preventive care.”

When it came to priority of mammograms, PCPs identified several reasons as to why women don’t get screened. Overall, they felt that most women simply procrastinate and put off getting their mammograms; they don’t have time, and they don’t make the time. While PCPs encourage screening, many women are concerned with other aspects of their health, and those take priority over screening.

Availability of Support Services When it comes to availability of support services, PCPs confirmed that they are a primary source of breast health education for women in Cattaraugus County. One barrier that was identified to accessing educational services was that many women do not know where to go to get information or support outside of their doctor’s office, especially for free services and financial assistance.

As previously mentioned, Cattaraugus County is home to special populations including the Seneca Nation of Indians and a fairly large Amish population. These groups are known for statistically low participation in preventative care, affecting screening proportions.

Cancer Care Providers Access to cancer care across the continuum of care Cancer care providers (CCPs) in Cattaraugus County identified several barriers in terms of access to cancer care across the continuum of care. Themes were similar to those mentioned by primary care providers, such as costs, unreliable transportation and the lack of availability of services.

Regarding insurance, CCPs often see that the costs associated with treatment prevent women from receiving proper care. Again, insurance is a huge barrier for women who are uninsured. For those with insurance, obstacles include masses of co-pays and high deductibles.

In terms of available services, there are limited treatment locations in Cattaraugus County, and women sometimes have to drive far distances to received care.

“We have relatively rural and impoverished population in part of the county, and trying to get them resources and see them in a timely fashion is difficult. And if they don’t have transportation, they don’t have ways to access what they need.”

Transportation was cited as a barrier to why women don’t receive appropriate treatment; CCPs mentioned that women often miss treatment due to lack of transportation. The costs of travel to and from appointments add up quickly, thus putting a financial burden on women. Unfortunately, CCPs find that some patients take cost into consideration when making decisions on their treatment.

Barriers to screening and early detection For CCPs, a major barrier to screening and treatment is communication with patients. Cattaraugus County is very rural and some patients live in areas without high-speed

147 | Page Susan G. Komen® Upstate New York November 2017 internet or cell service. Some women are also transient, and change addresses and phone numbers frequently which proves difficult for CCPs to provide follow-up care.

“You know, if you have a population that is kind of transient you might not be able to get a hold of them for follow up.”

Availability of support services When it comes to availability of support services, CCPs noted that community-based organizations serve as a primary source of breast health education for women in Cattaraugus County. Specifically, CCPs mentioned the Cancer Services Program of Allegany & Cattaraugus Counties for financial assistance and educational information.

Community-Based Organizations Access to cancer care across the continuum of care Community-based organizations (CBOs) in Cattaraugus County identified several barriers in terms of access to cancer care across the continuum of care. Many of the concerns mirrored those of the PCPs and CCPs. Screening and treatment locations are often inconvenient and require driving long distances. Costs associated with screening and treatment are barriers to women receiving proper care; Cattaraugus County has a low median income and many women work minimum wage jobs. Other issues included women being uninsured or underinsured, and the fact that many women do not have reliable transportation to get to appointments.

“I would say our transportation issues are huge…we are geographically large. And a lot of people either only have one vehicle or they don’t have a vehicle at all, and we don’t have mass transportation.”

In terms of availability of services, there are limited locations for women to choose from, especially when it comes to follow-up appointments or additional testing.

Barriers to screening and early detection Several themes were identified when it came to barriers to screening and early detection. CBOs mentioned that fear can keep women from being screened, specifically the fear of radiation from the mammogram procedure and that the mammogram is painful/uncomfortable. Also, the fear of being diagnosed with breast cancer was mentioned as a reason why women don’t get screened, as well as a reason why they do get screened.

“We have had some people say there weren’t going to get a mammogram because it hurt, they had one and it hurt. We have had people say they aren’t getting a mammogram because of the radiation, so there are all those myths still down here.”

Another theme was physician and health system issues. Much like the providers, the CBO’s note that many women do not have primary care providers, and that there is a high turnover rate of primary care physicians. Women also tend to mistrust the health care system, and recent changes in health care policy have furthered that mistrust.

148 | Page Susan G. Komen® Upstate New York November 2017 When it comes to priority of mammograms, CBOs identified several reasons as to why women don’t get screened; many were the same that PCPs acknowledged. Generally they feel that women procrastinate and just put off getting screened. They noted that women are often distracted with other aspects of their lives such family, other health issues, or simply addressing basic needs. They feel that those that do get screened probably do so because there was a family history, or they know someone who was diagnosed. They also feel that encouragement from PCPs, friends and family play a role in women getting screened.

Availability of Support Services When it comes to availability of support services, CBOs noted that they serve as a primary source of breast health education for women in this target area, specifically the Cancer Services Program and the health department. They also mentioned that churches, PCPs and hospitals also play a role in educating women about screening. Although there are different places women can go, there are still some myths and misconceptions when it comes to screening. In terms of availability of support services, they felt that many women weren’t sure where to go to get information, specifically for the free and low-cost services, which can create a barrier to them getting screened. There are some existing avenues that are used for awareness and education e.g. health fairs, a local support group, and community events, but those are far and few between.

CBOs noted that in terms of educating these groups, materials not always culturally sensitive to their cultures. The also mentioned that cultural norms, such as not routinely following preventive care, can create a barrier in getting these women screened.

Women 40 Years Old and Older The demographics and socioeconomics of the Cattaraugus County 40 years old and older women that participated in the focus groups can be found in Figure 4.2.

Access to cancer care across the continuum of care Women 40 and older in Cattaraugus County identified several barriers they face when it comes to accessing cancer care across the continuum of care. Overall, responses of women were comparable with those of the other target groups. Women find that screening and treatment options are located in areas that are inconvenient and difficult to get too. For many women, the cost of screening or treatment can be a barrier for women in this area, especially when it comes to those who are underinsured/uninsured. The quantitative section of the report identified 38.9 percent of residents of Cattaraugus County as falling below 250 percent of the poverty line. Women also mentioned that transportation is a contributing factor as to why women aren’t screened; there isn’t a public transportation system, and options for shuttles and cab services are very limited. Overall, there is a lack of availability of services.

“But then again, you’re trying to connect this route with that route because you have to be here at that time and it might be several towns from where you’re going and it’s hard geographic, economic, and I want to say educational.”

149 | Page Susan G. Komen® Upstate New York November 2017

Average Age of Focus Group Average Income of Focus Participants 40+ (N=4) Group Participants 40+ (N=4)

$10,000 or less 25% 40-49 25% $10,001- 50-59 50% 50% $20,000 60+ 25% 25% More than $50,000

Average Race/Ethnicity Focus Group Participants 40+ (N=4)

White

100%

Figure 4.2. Cattaraugus County women 40+ focus group demographic and socioeconomic factors

Barriers to screening and early detection Women 40 and older were very vocal when it came to pinpointing barriers to screening and early detection. Fear was a prominent theme; fear that the procedure is painful and uncomfortable, and of being diagnosed with breast cancer. They noted that many women are generally anxious when it comes to mammograms.

“I think that’s the bad part about getting women to screen regularly, is the fear factor.”

When it comes to priority of mammograms, women had similar feedback to the CBOs. Women were more concerned with other aspects of life such as taking care their family and work. For the most part, women procrastinated in getting screened or just did not have the time. It can be challenging for women to coordinate their care when they are concerned with other aspects of life.

“I mean definitely, especially the people I work with, a lot of times, their kids have been removed. Their big thing is ‘how do I get my kids back?’ They’re not worrying about their own physical well-being.”

Women also mentioned that the factors such as family history played a role in why women do get screened. They also noted that knowing someone who had been

150 | Page Susan G. Komen® Upstate New York November 2017 diagnosed was a motivating factor, especially when living in a close-knit small town where everyone knows each other.

Availability of support services When it comes to availability of support services, women 40 and older all said that they received education on breast health primarily from their doctors. They also mentioned specifically the Cancer Services Program and the Health Department as two CBOs that generally had available information as well.

Overall, women 40 and older felt that there was a lack of awareness in the target area, and that many women weren’t sure where to go for educational information, particularly for the free services. They also felt that despite available services, there were still many myths and misconceptions that prevented women from being screened.

Breast Cancer Survivors The demographics and socioeconomics of the Cattaraugus County breast cancer survivors can be found in Figure 4.3.

Average Age of Focus Group Average Income of Focus Group Participants Survivors (N=9) Participants Survivors (N=9)

$10,001-$20,000 22% 11% 22% 33% 40-49 $20,001-$30,000 50-59 More than 60+ 45% 22% $50,000 45% Don’t know

Race/Ethnicity of Focus Group Stage at Diagnosis of Focus Group Participants Survivors (N=9) Participants Survivors (N=9)

20% 30% Stage 1 Stage 2 White Stage 3 30% 20% Stage 4 100%

Figure 4.3. Cattaraugus County survivors focus group demographic and socioeconomic factors

151 | Page Susan G. Komen® Upstate New York November 2017 Access to cancer care across the continuum of care Survivors in Cattaraugus County identified several barriers they face when it came to accessing cancer care across the continuum of care. Overall, responses of survivors were comparable with those of the other target groups. Survivors found treatment options were located in areas that were inconvenient to access, having to travel between Buffalo or Rochester for car. For many survivors, the cost of screening or treatment was a barrier, especially when it came to those who are underinsured/uninsured. For those with insurance, copays and high deductibles were a source of stress, and unfortunately it played a role in the care they received.

“Yeah if you are under long term care, and you are going right along, I mean the copays add up and if you don’t have a lot of money, we really need help in this area.”

“When a woman is diagnosed with breast cancer, immediately she needs to know a lot of things, she has a lot of questions, she is very frightened.”

Medical complications were another theme with survivors, primarily with the impact that breast cancer has on mental health and emotional well-being, especially during and after treatment.

Availability of support services When it came to availability of support services, survivors said that they received education on breast health primarily from their doctors. They also mentioned CBOs as a source, specifically the Cancer Services Program as being integral to women in 152 | Page Susan G. Komen® Upstate New York November 2017 Cattaraugus County when it came to financial assistance and education. Survivors felt very strongly about the education from other survivors, and have found that support to be very important in their breast cancer care. Overall, survivors felt strongly that education should start earlier, and that more young women need to be educated on knowing their bodies and what is normal. Overall, survivors felt there was a lack of awareness and education for women in this target area, especially when it comes to treatment and its side effects, and where women can go for emotional support.

“Somehow we have to get out the message that there is help and there is a starting point, and I think that is where we need to help, is to let women know what to do and what’s your starting point.”

Table 4.3 provides a comparison of themes across Cattaraugus County. Common themes across all populations of interest are knowledge, health system issues, priority level of getting a mammogram and access to services.

Table 4.3. Comparison of themes across Cattaraugus County THEMES POPULATION Health Education/ Priority of Access to Medical OF INTEREST Fear System Culture Knowledge Mammogram Services Complications Issues PCPs X X X X X X CCPs X X X X X CBOs X X X X X X 40+ X X X X X Survivors X X X X X X

Erie County In Erie County, the focus groups were held downtown at the offices at the University at Buffalo with one facilitator and each session was audio recorded. A total of six focus groups, three for survivors and three for women over 40, were conducted. Thirty-two key informant interviews were conducted with PCPs, CBOs, and CCPs. A majority of the key informants serve a largely urban and minority population in the City of Buffalo.

Primary Care Providers Access to cancer care across the continuum of care The health care system can be challenging to navigate, particularly for those with financial, insurance, or transportation barriers. The cost of services, including co-pays, can deter women from seeking breast health services.

Primary care providers noted that a lack of adequate insurance or a lack of any insurance at all can prevent women from seeking services. Some women do not have a primary care doctor and therefore are missing opportunities for education on the importance of breast health screening and encouragement to get screened. People who are underinsured or uninsured may not seek screening.

A lack of availability of services reduces access to cancer care resources. Radiology services are sparse in the city and there is an overall limited availability of mammography facilities. Many of the residents of Erie County face transportation issues

153 | Page Susan G. Komen® Upstate New York November 2017 and may not have reliable personal transportation. The majority of mammography facilities in the area are located outside of the city of Buffalo and in the suburbs and are not accessible via bus route or metro line. Some comments from providers:

“Transportation, they are unable to get to places that do breast screening”

“Transportation is always an issue that goes on with mammography”

A Mobile Mammography Coach introduced into the Western New York community in 2012 has been successful in alleviating transportation and financial barriers for some in the City of Buffalo and other places in Erie County. The coach reaches medically underserved women living in the city of Buffalo. The Mammography Coach has also recently been servicing areas of Cattaraugus County, another target community of the Profile. Patient Ambassadors assist women in navigating the mammography process.

“We work very closely with the mammogram bus and the women and the peers actually come to our site at least once a month”

“Well we have absolutely loved the bus parking right outside our door. [women] may or may not know how to get to the mammography unit... and our office is really pretty easy to do”

Barriers to Screening and Early Detection Barriers to screenings and early detection identified include fear, lack of communication within health systems and a lack of prioritizing of mammograms.

In all target areas, fear has been identified as a substantial issue, inhibiting many women from seeking breast health services. Providers mentioned patients’ fear of the potential of pain or discomfort associated with the mammogram, fear of positive findings, and a general fear of the mammogram itself to be major deterrents. Informants noted that some women have had painful experiences in the past and do not want to endure that again. Overcoming the fears associated with a potential diagnosis is essential to encouraging women to enter the continuum of care.

“Fear of pain, having experienced pain before and not wanting to experience it again”

Increased efforts towards improving communication between a woman’s care team as she navigates the breast cancer continuum of care was cited as a health systems barrier that needed to be addressed, particularly if a woman does not follow up after receiving a referral for mammography. Office processes may not necessarily appropriately track the people who are due for their mammograms. There is sometimes a lack of communication between the primary care provider and an OB/GYN who may make a referral for mammography, but that information does not get passed along to the primary doctor. Providers stated that there can also be challenges when providers don’t share test results or patient notes.

Need for a referral also poses an issue for women seeking breast health services. A woman might have an appointment set up, but when she arrives with no referral she

154 | Page Susan G. Komen® Upstate New York November 2017 cannot be seen. If she is denied at the door and has to reschedule, it’s unlikely that she’ll return for an appointment.

“There should be a little bit better coordination between the outside agencies”

Lack of primary care providers can prevent women from receiving breast screening services. A lack of primary care can cause interruptions in healthcare. These gaps in services create greater opportunities for mammograms due dates to go unnoticed.

Providers noted that women were more likely to get a mammogram if a family member or someone they knew had been diagnosed with breast cancer. Knowing someone personally or being aware of one’s own family history greatly encouraged women to seek breast health screening. Also, women who are proactive in their health care and see a doctor regularly were more likely to have a mammogram done. Other factors include procrastination, a general unwillingness to follow up with mammogram referrals, and not seeking care until they find a lump or experience some form of abnormality.

Some women have had mammograms done for many years without issue and do not understand the importance of continuing breast health services. One provider mentioned that some women believe that prayer and spirituality will take care of them. Also, scheduling appointments can be an issue. Finding a time that is convenient for the patient can be difficult. Some women work during the day and are unable to get to mammography facilities in the evening, particularly those that are located a considerable distance away.

Availability of support services Women often receive their breast health information primarily from their primary care providers and community based organizations. Providers indicated that many women in the City of Buffalo do not understand the importance of screening, and are uninformed or unclear about risk factors. Those who do seek screening are confused about how often to be screened, as well as about treatment options and follow-up care.

Providers had concerns about the variety of screenings available. Conflicting mammography guidelines could lead to confusion for women and healthcare providers. Women receive breast health information from a variety of sources including the media, particularly during October (Breast Cancer Awareness Month). Having access to such varying information can lead to myths, misconceptions, and confusion.

Informants acknowledge some confusion themselves regarding breast cancer screening guidelines. The most common guidelines mentioned were the American College of Radiology, United States Preventive Services Task Force, American College of Physicians, and American College of Obstetrics and Gynecology.

One provider mentioned a misconception that some women believe that seeking care causes cancer. They believe that if they go to the doctor they will receive a breast cancer diagnosis. One provider acknowledged a lack of cultural sensitivity that could potentially create barriers and mistrust within the system. Another provider, whose office serves primarily refugee patients, helps with reducing cultural barriers to care by 155 | Page Susan G. Komen® Upstate New York November 2017 ensuring refugee women are able to get to appointments and securing translation services when necessary.

Cancer Care Providers Access to cancer care across the continuum of care Healthcare coverage issues are substantial and problematic for the community hindering the ability to obtain services. Financial barriers for women seeking care as well as for cancer treatment facilities can inhibit access to adequate cancer care resources. Many facilities cannot afford the new state of the art equipment. More facilities would be willing to invest if services were reimbursed better.

Insurance is an important factor in whether a woman receives necessary services. The ability to afford co-payments or out of pocket costs can get expensive, discouraging people from receiving necessary services such as therapy for lymphedema (swelling of the limbs after surgery) or prescription drug coverage. One provider identified an organization that provides underinsured or uninsured women with resources to obtain compression garments to aid in treating their condition. One cancer care provider mentioned recent insurance policy changes negatively affecting women receiving breast cancer treatment from their institution. These recent changes no longer allow women to receive follow up mammograms performed at their cancer treatment center because it is not a free-standing center. Patients that have been receiving longtime services must disrupt care and begin receiving services elsewhere.

Another cancer care treatment center hosts a “free mammo day”, with provided transportation. They also work closely with New York State’s Cancer Services Program, a program federally funded by the Center for Disease Control (CDC) and further supplemented by the New York State Department of Health that offers education, screening, diagnostics, case management and treatment assistance to residents for breast, cervical and colorectal cancers.

“Insurance is a big thing because they aren’t able to get the services and the products that they need.”

Transportation was cited as a factor deterring women from appropriate access to services. Women who do not have reliable transportation cannot make it to their appointments or therapy sessions. Some patients are coming in from rural communities several hours away. While patients may be seeking resources from a particular cancer treatment center, many women are reluctant to come in to the city. The ability for them to come to an area several hours away for all aspects of their care can be limited.

One cancer care provider’s concern with guidelines was that there are many papers that come out every few years with varying perspectives on breast screening. It can be difficult for people to know which guidelines to follow. In general, many CCPs were comfortable with the guidelines that they chose to follow. One provider sits on a panel where they have an active input into some of the guidelines that are used around the country for breast cancer care. Although which guidelines were not specifically mentioned, it was alluded to be some of the more commonly used guidelines.

156 | Page Susan G. Komen® Upstate New York November 2017 Barriers to screening and early detection Cancer care providers mentioned many barriers to screenings, thus reducing the opportunities for early detection. Fear of being tested and anxiety associated with the exam was mentioned as factors by only two providers.

There is a lack of communication between healthcare providers. Partnerships between oncologists and primary care doctors are not streamlined. They do not have shared medical records or a formalized process for follow up care. Communicating to care providers from outside institutions or for patients that see providers at multiple different locations is challenging, particularly in getting up to date imaging reports and ensure all steps in a treatment plan are completed. Making the process after diagnosis as easy as possible and helping patients navigate their course is essential to providing quality care across the cancer care continuum.

A variety of factors influence whether a woman seeks breast health services. Availability of appointments after standard working hours may encourage more women to get screened. CCPs mentioned that patients delay seeking medical evaluation or do not follow cancer screening recommendations. However, one radiology clinic representative indicated that the population of women seen at the facility are diligent about following up with their care and understand the ramifications of detecting the cancer earlier.

Availability of support services CCPs agree that improving education and public awareness of breast health is a necessary endeavor. Many patients are not aware of recommendations or why preventative healthcare is important. Many CCPs were aware of resources available to women in Erie County, such as medical services, nutritional services, genetic counseling, lodging, hospice, navigation, and community groups and non-profit organizations that offer support and recommend their patients to them. One cancer treatment center offers the Look Good Feel Better program, a program offered free of charge that holds group workshops that teach beauty techniques to female cancer patients to help them combat the appearance related side effects of cancer treatment. In regards to cancer screening guidelines, cancer care providers acknowledged some confusion for patients with which guidelines to follow. The availability of a variety of sources of information can lead to some confusion and inaccurate information. However, overall cancer care providers felt comfortable with the guidelines they chose to follow and did not note any concerns other than the confusion having so many guidelines available can place on women.

“It is hard for the people to understand, the public to understand how important the screening is because they are getting all these mixed messages”

Community Based Organizations Access to cancer care across the continuum of care Community-based organization informants mentioned that many mammography centers in the city of Buffalo have either closed or relocated farther out into the suburbs. One CBO emphasized a need for increased incentives and promotion of screening services to women in the county. Women who would like to utilize the mobile mammography unit

157 | Page Susan G. Komen® Upstate New York November 2017 but are uninsured are referred to Cancer Services. Lack of reliable transportation and insurance were also identified as barriers to accessing breast health services.

“Financial burden so many times can be overwhelming.”

Barriers to screening and early detection Informants cited that fear remains a pervasive deterrent to screening. Fear of the exam itself or a fear of pain were mentioned often. Some women have heard horror stories or have had unfortunate experiences themselves and decide to never be screened again. Some have received positive results and are afraid to go back for follow up because they are afraid to hear something else. Some women just do not want to think about the status of their breast health.

“We hear people complain that they think it is going to be painful.”

Two informants indicated that gaps with care coordination and navigation pose an issue. Currently, there is a disconnect between the medical jargon that providers use with patients. Providers often may not notice how the medical terminology is received by the patients when talking with them about their healthcare. Patients may not speak up for fear of appearing as if they do not understand the doctor. It was suggested that increasing communication and collaborations among organizations that provide similar services and educational outreach may maximize opportunities to reach women at risk.

Scheduling and timing have been identified by key informants as barriers to mammography for women. Many women are too busy either with work, taking care of family, or just meeting daily life needs to take the time to schedule and keep an appointment. Finding a time that is convenient for both women during available hours at the mammography facility can be difficult. One informant noted that difficulty in scheduling and that needing to reschedule an appointment reduces the likelihood that a woman will maintain follow-up appointments.

Some women face denial that further care or cancer treatment may be necessary and choose not to follow-up. There may also be a belief that it won’t happen to them. Some women are just aren’t interested in their breast health.

Informants stated that women may be already overwhelmed with daily life and the last thing they are worried about is preventive health. People who grew up with preventive health as a regular aspect of their life are more prone to make health-related appointments and well visits. The strongest factors that influence women to seek screening are if a family member or someone they knew personally had been affected by breast cancer or if they had been advised by their doctor.

“The last thing someone is going to worry about is a mammogram if they can’t put food on the table for their kid”

“A lot of these young women today are double income families and so both parents are working and have a lot of responsibilities”

158 | Page Susan G. Komen® Upstate New York November 2017 Availability of support services Key informants stated that there is a lack of education and understanding on the importance of breast health and screening among women in Erie County. Although many community based organizations, primary care providers, and hospitals offer educational resources regarding breast health, there is still a need for increased education among women.

It appears women in the city of Buffalo are unaware of the variety of resources available to them throughout the county. Since death rates for African-American women are considerably higher, targeted programs are needed to reach these women and ensure they seek regular screening and understand resources that are available to them. Many community based organizations make their presence known at health fairs and participate in community events, bringing education directly into the community. These were cited as desirable and effective strategies for engaging women in the breast cancer continuum of care. It was mentioned that one of the first points of contact with the healthcare system is not with the physician but with the front desk. Investing the front- line staff in breast cancer awareness could be an integral step in spreading awareness and sharing information. With physician and staff turnover, it can be difficult for offices and clinics to maintain consistency with distribution of breast health information. Therefore, role of community based organizations is vital in ensuring in public awareness of breast health.

“I think that bringing services in to the community is a good approach, I think it is effective... I think that you have to bring the services out to the community”

“I just think that van has really hit on a great outreach”

Hispanic/Latina women living in the city of Buffalo face challenges accessing facilities that speak their language or provide culturally appropriate educational materials and resources. Most facilities are primarily English speaking and not many facilities provide interpretative services or translated materials. One informant utilizes the mobile mammography unit because staff from the organization can go with women to the bus and interpret for them. A lack of childcare was also mentioned as a barrier to care.

“We have a lot of problems finding a clinic that they are able to go and that they speak Spanish.”

Survivors that may feel that their treatment or surgery is over and want to forget it ever happened can be a stumbling block for follow up care. It is important to remind survivors that follow up care is a continuation throughout their lifetime, even after treatment is completed.

Refugees Access to cancer care across the continuum of care A lack of transportation and child care present barriers to access in cancer care. Informants were not aware of any resources specific to refugees that are not available to other populations. As a means of overcoming literacy and language barriers, one informant would turn educational sessions into a game and make it fun for women participating. 159 | Page Susan G. Komen® Upstate New York November 2017

Barriers to screening and early detection Although neither of the two informants experiences any cases of actual diagnosis with the refugee population, they encountered some with history or who were at risk. Factors that encourage screening include increased education, knowing somebody close who might have been diagnosed or passed away because of cancer, or if their doctor suggested screening.

Fear prevents many refugee women from going for screening. They are afraid of finding something. The fear is so pervasive women do not even want to utter the word “cancer” for fear that if they say it they might get it. In some instances shame can be a barrier. Women may think if they find out that anything is not normal that it’s going to be embarrassing

“They actually refer to it as ‘that disease’”

Availability of Support Services Breast cancer education has a very positive impact on refugee women. Much of the education comes from their primary care doctor or community based organizations. One CBO reaches out to resettlement agencies, English as a Second Language (ESL) classes, other CBOs, health fairs, and some faith based organizations. An informant finds that there is not enough information for many of them about what screening entails and why it’s important to get done. One informant said refugee women sometimes believe in myths and misconceptions about screening and about causes of cancer such as not eating certain types of food reduces their risk of cancer. Oftentimes, refugee women are lacking local support systems. They lack child care during screenings and/or treatment.

In addition, facilities encounter language and culture differences. Providing interpreters or as much information in their own language as possible could assist in eliminating that barrier.

Women 40 Years Old and Older The demographics and socioeconomics of the Erie County 40 years old and older women that participated in the focus groups can be found in Figure 4.4.

Access to cancer care across the continuum of care All three focus groups have identified insurance status and cost of services as a factor preventing women from seeking services. Some women felt that their level of insurance and what they could afford to pay affects the type of healthcare they receive. As a result, people with a lack of insurance may not seek non-emergent health care.

Barriers to screening and early detection Fear was cited as a leading reason why women are not getting screened. The fear of “finding something” or receiving a breast cancer diagnosis leads women to avoid screening. Women continue to fear the possibility of a painful or uncomfortable mammogram. Some women have had uncomfortable experiences in the past inhibiting them from seeking services in the future. Also, the fear of “not knowing” what the results could be or if they were diagnosed what that could mean for them cause women to 160 | Page Susan G. Komen® Upstate New York November 2017 become worried and have anxiety associated with screening resulting in not wanting to have a mammogram done.

Average Age of Focus Group Average Income of Focus Group Participants 40+ (N=13) Participants 40+ (N=13)

$10,000 or less

22% 22% $10,001-$20,000 38% 39% 40-49 $20,001-$30,000 50-59 60+ $30,001-$40,000 23% 56% More than $50,000

Average Race/Ethnicity Focus Group Participants 40+ (N=13)

African American

Hispanic/Latina

American Indian 100% or Alaska Native

Figure 4.4. Erie County Women 40+ Focus Group Demographic and Socioeconomic Factors

Women from all focus groups felt that a patient’s relationship with the doctor was critical to seeking screening and treatment services. Focus group participants felt that trust was of high importance and if a woman did not like or agree with their doctor it was their choice to get a different doctor. Many women cited experiences of dealing with health care providers that lacked compassion and understanding either during screening or cancer treatment.

“Doctor’s don’t have, a lot of them don’t have compassion for their patient, they’re just another customer.”

Women cited that being aware of their own family history with breast cancer or knowing someone personally who was diagnosed with breast cancer motivated them to seek breast health screening. Women in the focus groups admitted to not receiving a mammogram due to other health concerns that took precedence in their life. One woman stated that she did not think breast health crossed a woman’s mind that often. Of the women in the 40+ focus group, a majority of them did not have a family history of breast cancer. Although they recognized the importance of breast health screening it appeared

161 | Page Susan G. Komen® Upstate New York November 2017 that they were overall not too worried about their breast health due to having no known family history of breast cancer.

Availability of support services Some women in the focus group were not aware of resources in their own community. Most women were familiar with Roswell Park Cancer Institute (RPCI) and assumed that RPCI had support and resources but did not know for certain. Women were not familiar with the variety of community based organizations in Erie County that provided support and education resources. Generally, women were unaware of Cancer Services Program, when discussed during focus groups. The CSP has a presence in every county allowing uninsured women 40 or older (or younger, if family history/or palpable finding) eligibility for breast cancer screenings. Women who utilize the CSP have the freedom to attend any regional mammography center for screening; however, many uninsured women do not access the Cancer Services Program due to a lack of awareness of its existence and services offered.

Breast Cancer Survivors The demographics and socioeconomics of the Erie County breast cancer survivors can be found in Figure 4.5.

Average Age of Focus Group Average Incomes of Focus Group Participants Survivors (N=6) Participants Survivors (N=6)

$10,001-$20,000 0% 39 or younger 33% 33% 33% $30,0001-$40,000 40-49 50-59 $50,000 or more 67% 0% 60+ 17% 17% Would prefer not to disclose

Race/Ethnicity of Focus Group Stage at Diagnosis of Focus Group Participants Survivors (N=6) Participants Survivors (N=6)

16% 33% African American 33% Stage 1 White 50% Stage 2

No Answer Stage 3

51% 17%

Figure 4.5. Erie County Survivors Focus Group Demographic and Socioeconomic Factors

162 | Page Susan G. Komen® Upstate New York November 2017 Access to cancer care across the Continuum of care Women in the survivors’ focus groups identified that insurance status and cost of services can prevent women from seeking services. One uninsured breast cancer survivor had a particularly difficult time navigating her diagnosis and treatment process and was unaware of the resources offered by CSP and the Medicaid Cancer Treatment Program (MCTP).

Barriers to screening and early detection Women from all focus groups felt that a patient’s relationship with the doctor was critical to seeking screening and treatment services. Focus group participants felt that trust was of high importance and if a woman did not like or agree with their doctor it was their choice to change to a different doctor.

Some women experienced periods of depression post diagnosis. Some women felt alone during treatment, particularly due to the side effects, which made many patients tired and lethargic. At times family members and friends would be unavailable. Others experienced medical complications such as lymphedema and hematoma. Facing yet another obstacle to their treatment further exacerbated the feelings of loneliness and sadness.

“Sometimes I’d be so down, because it seemed like I’d be there all by myself”

Availability of support services Survivors indicated seeking support among other survivors is a valuable resource. Learning from one another’s experiences and sharing strategies was helpful during treatment and after. Most participants were aware of support resources in the area, although they acknowledge not utilizing many resources at the beginning of the diagnosis or during treatment. Side effects of the treatment left many women unable to participate in support groups or access support resources. Participants noted the shock of the diagnosis and figuring out what next steps to take was overwhelming. Several women noted insufficient communication after their initial diagnosis is relayed to them by their doctor. One woman was shown a video, where others receive so much information from their physician it was difficult to process and retain when they were in such disbelief. Another woman’s doctor told her mother who then told her that she had cancer rather than tell her directly. Participants stated that a patient navigator would have been helpful. None of the women in the focus groups used a patient navigator to guide them through the breast cancer Continuum of care. This was due to either the time they were diagnosed patient navigators did not exist, or they were unaware of the services and were not offered navigation. The support of family and friends, as well as the support of other survivors, was crucial to women diagnosed with breast cancer. One woman went through treatment with a neighbor who was diagnosed as well and they acted as a support system for one another.

“Meeting new people, new patients, newly diagnosed women and just being supportive of their situation. Just doing it together and just kind of like crying on each other’s shoulders”

“They sat me down in front of a video to watch it but I can’t remember one second of it because I was so upset” 163 | Page Susan G. Komen® Upstate New York November 2017

Table 4.4 provides a comparison of themes across Erie County. Common themes across all populations of interest are fear, knowledge, health system issues, priority level of getting a mammogram and access to services.

Table 4.4. Comparison of themes across Erie County THEMES POPULATION Health Access Priority of Medical OF INTEREST Fear Knowledge System to Culture Mammogram Complications Issues Services PCPs x x x x x x CCPs x x x x x x CBOs x x x x x x 40+ x x x x x Survivors x x x x x x

Wyoming County In Wyoming County, three key informant interviews were conducted. No focus groups were held in this county.

Primary Care Providers Access to cancer care across the Continuum of care The primary care provider interviewed in Wyoming County had little to say concerning access to the Continuum of care. Insurance was brought up and it was mentioned that those who are uninsured are referred to the health department for a free mammogram.

Barriers to screening and early detection Several fears were discussed as barriers to being screened. Along with anxiety, the fear that the mammogram is painful or uncomfortable, and the fear of being diagnosed with breast cancer were also mentioned as barriers.

There were several physician and health system issues discussed as well, although mostly in terms of the primary care provider’s role after diagnosis and in breast cancer survivor’s follow-up care. The primary care provider was satisfied with their role, and with the coordination of care and communication between themselves and the specialists the patients go to.

Priority of mammograms seemed to be a major barrier according to this key informant. Lack of motivation and lack of time on the part of patients are important barriers to screening. However it was mentioned that many women do get screened because of encouragement from their primary care provider.

“The one I can think of, she says she had a terrible experience, and that she’s decided that she’s never going to go back again… there are some women that have had those experiences that don’t want to go back.”

“We just get back to the routine health maintenance…we encourage them to continue follow up with whatever their recommendations are with their specialist, whether it be the oncologist, the surgeon or both… we encourage regular follow up with them.”

164 | Page Susan G. Komen® Upstate New York November 2017

“A couple of patients who just refuse to do any further mammograms…They’ve made up their mind that they don’t want to have them anymore…There’s the women who just get busy with their schedules… they just, you know, don’t schedule [mammograms].”

Availability of support services The provider noted that many people received most of their educational information from their primary care physician. There is a general lack of education on the part of providers as to a cutoff date to stop mammograms. It was also mentioned that there is a lot of confusion surrounding screening guidelines.

"They’re confused by the recent newer recommendations, and they weren't sure if they should go or not, between the 40-50 year old and then the older women if they should go every year or not, and so we usually clarify this at their office visits, and we recommend the annual mammogram screening.”

Community Based Organizations Access to cancer care across the Continuum of care There were many access issues noted by the two community based organizations informants in Wyoming County. Insurance, both under and uninsured, was of concern, and identified as a barrier to accessing screening or care in general. Transportation was another barrier to accessing cancer care due to the frequent visits and necessary travel. Tying in with the transportation issue is the lack of available services and the inconvenient location of available services. These two were related, as more services available in the county would also improve the convenience. There is no support for survivors in Wyoming County.

“One of the largest requests is transportation assistance because gas is so expensive and they have to go so frequent”

“We have no cancer services in our vicinity. We have a surgeon that does excisional biopsies, but once they have been diagnosed they need to refer and they would have to go out of town.”

“The other thing there is a great need for is our cancer support groups for family members or survivors or clients positive with the disease, there is nothing for them.”

Barriers to screening and early detection Fear was a major barrier noted by the informants from community based organizations. They mentioned fear of radiation from the mammogram procedure, fear that the mammogram is painful or uncomfortable, fear of being diagnosed with breast cancer, and general fear as well.

A woman’s priority of a mammogram was also noted. Time was a major factor noted by both of the community based organization informants. However, the importance of being on an every year schedule and encouragement from the primary care provider was also mentioned as important to encouraging screening.

165 | Page Susan G. Komen® Upstate New York November 2017 Availability of support services The informants for the community based organizations felt that there was a lot of information available to women in Wyoming County. They noted that women could get educational information from their primary care physicians, hospitals, and other community based organizations, including the health department, the media and internet, programs during breast cancer awareness month and from other women or survivors. However, the importance of improving provider education was also discussed.

"The wealth of coverage of promotion of breast cancer awareness month, around the month of October, might move someone to action who has not been screened timely.”

“We do try to make [providers] cognizant of reminding their female clients of the importance of being screened and helping them connect with screening resources if they need it.”

Table 4.5 provides a comparison of themes across Wyoming County. Common themes across all populations of interest are fear, knowledge, health system issues, priority level of getting a mammogram and access to services.

Table 4.5. Comparison of themes across Wyoming County THEMES

POPULATION OF Health Priority of Access to Medical INTEREST Fear Knowledge System Culture Mammogram Services Complications Issues

PCPs x x x x x CBOs x x x x x

Comparisons across target communities key informants In order to reflect the overall percentages of themes, key informants (CBOs, PCPs, CCPs) and focus group participants (40+ and survivors), were combined across each county for calculation. Percentages were calculated by dividing the number of key informants across an individual county by the total number of informants in that same county.

In all target areas, fear has been identified as an issue, inhibiting many women from seeking breast health services (Figure 4.6). Overcoming the fears associated with a potential diagnosis is essential to encouraging women to enter the Continuum of care. Many women in the rural communities of Cattaraugus, Allegany, and Wyoming Counties, as well as within the City of Buffalo receive breast health information primarily from their primary care physician (Figure 4.7). Other sources of information include a variety of community based organizations, and media sources. Coordination of care was a substantial barrier to the breast health Continuum of care in all counties, although the percentage for Allegany was so small it is not shown (Figure 4.8). Communication deficits and a lack of PCP were largely mentioned among informants in Allegany and Cattaraugus counties. Family history or knowing someone was a strong motivator for women to seek breast screening services in Erie, Allegany, and Wyoming Counties (Figure 4.9). Also, if a woman is more health conscious and visits her doctor regularly, she is more likely to seek screening in those counties as well. A lack of time was indicated in Cattaraugus and Wyoming as a factor as to why women may not seek screening. Busy schedules either with

166 | Page Susan G. Komen® Upstate New York November 2017 work or family and other life priories make scheduling mammograms challenging. In all target areas cost and insurance status were acknowledged as main concerns inhibiting women from accessing services (figure 4.10). The cost of co-pays or potential out of pocket costs for the uninsured and underinsured can deter women from accessing services. Transportation and availability of services were also mentioned as major factors preventing women from accessing services.

Fear 100% 90% 80% 70% 66% 66% 60% 50% 40% 34% 33% 28% 30% 30% 30% 25% 18% 20% 10% 0 00 0% Erie Cattaraugus Allegany Wyoming

Pain Positive Finding General Fear

Figure 4.6. Key Informant Responses - Fear

Source of Education/Knowledge 100% 100% 90% 78% 80% 80% 70% 70% 64% 60% 56% 50% 50% 40% 33%30% 33% 30% 21% 20% 12% 10% 0% Information from PCP Information from CBO Educational Information from media/Breast Cancer Awareness month

Erie Cattaraugus Allegany Wyoming

Figure 4.7. Key Informant Responses – Education/Knowledge

167 | Page Susan G. Komen® Upstate New York November 2017

Physician/Health Systems Issues 100% 90% 80% 70% 60% 50% 40% 40% 34% 33% 33% 28% 30% 30% 21% 20% 14% 10% 0% 0% 0% 0% 0% Coordination of Care Communication Lack of/No PCP

Erie Cattaraugus Allegany Wyoming

Figure 4.8. Key Informant Responses – Physician/Health Systems Issues

Priority of Mammogram 100% 100% 90% 80% 70% 60% 50% 40% 40% 40% 28% 28% 28% 30% 20% 12% 10% 10% 1% 0%0% 0% 0% Family History, Knew someone Healthcare conscious, doctor visits No time regularly

Erie Cattaraugus Allegany Wyoming

Figure 4.9. Key Informant Responses – Priority of Mammogram

168 | Page Susan G. Komen® Upstate New York November 2017 Access to Services 100% 100% 90% 80% 80% 70% 70% 64%66% 64% 57% 60% 60% 50% 50% 37% 40% 34% 34% 34% 30% 25% 20% 10% 0% 0% Cost Lack of Insurance Does not have reliable Lack of availability of Transportation services

Erie Cattaraugus Allegany Wyoming

Figure 4.10. Key Informant Responses – Access to Services

Comparisons across target communities focus groups In all target areas women that participated in focus groups mentioned fear as a leading factor preventing women from seek breast health services (Figure 4.11). Women may have experiences painful mammograms in the past and are hesitant to go again or have hurt that mammograms are painful. Women are fearful of “finding something” or be diagnosed with breast cancer. A general fear surrounding breast health or of the exam itself was a prevalent sentiment among the focus groups. In all target areas women received their breast health educational information either from their primary care doctor or a community based organization in their area, with CBOs identified more often (Figure 4.12). An improvement in communication and coordination of care among the health system is necessary (Figure 4.13). Many women indicated that having a good rapport with the doctor is imperative to their care. Participants across all counties mentioned that if she did not feel comfortable or felt that the physician was not empathic to her situation, changing doctors was her prerogative. Knowing someone personally or having a family history of breast cancer encouraged women to seek breast health services (Figure 4.14). Encouragement from their provider was also a strong motivator. In all target areas cost and insurance status influenced access to services (Figure 4.15). Women were concerned with cost of services and co-pays. Transportation costs and the reliability of transportation were factors as well. For the rural communities, the price of gas and frequency of travel for treatments was a concern. Public transportation was not always a reliable alternative for many women.

169 | Page Susan G. Komen® Upstate New York November 2017 Fear 100%100% 100% 100% 100% 100% 90% 80% 70% 60% 50% 50% 50% 50% 50% 40% 30% 20% 10% 0% Fear of Pain Fear of Positive Finding General Fear

Erie Cattaraugus Allegany

Figure 4.11. Key Informant Responses - Fear

Education/Knowledge 100%100% 100% 100% 100% 90% 80% 70% 60% 50% 50% 40% 30% 25% 20% 10% 0% Educational information from PCP Educational information from CBO

Erie Cattaraugus Allegany

Figure 4.12. Key Informant Responses – Education/Knowledge

170 | Page Susan G. Komen® Upstate New York November 2017 Health Systems Issue Erie Cattaraugus Allegany 100%100% 100% 100% 100% 90% 80% 70% 60% 50% 40% 30% 20% 12% 12% 10% 0% Coordination of care Communication

Figure 4.13. Key Informant Responses – Health Systems Issue

Priority of Mammograms

Erie Cattaraugus Allegany

100% 90% 80% 70% 60% 50% 50% 50% 50% 40% 30% 25% 20% 10% 0% 0% 0% Family History, knew someone Encouragement from provider

Figure 4.14. Key Informant Responses – Priority to Mammograms

171 | Page Susan G. Komen® Upstate New York November 2017 Access to Services

Erie Cattaraugus Allegany 100%100% 100% 100% 100% 100% 100% 90% 80% 70% 60% 50% 37% 40% 30% 25% 20% 10% 0% 0% Cost Transportation Insurance Figure 4.15. Key Informant Responses – Access to Services

Qualitative Data Findings

Central Region Quantitative findings presented questions about root causes for elevated late-stage breast cancer diagnosis rates and higher death among the Affiliate’s target populations in Monroe, Onondaga, and Seneca Counties. The Health Systems and Public Policy Analysis channeled these unknowns into an examination of where in the continuum of care the system fails Black/African-American women. Based on past results, the Affiliate explored life experiences and perspectives that constitute barriers to breast health care among these women. The Affiliate questioned many aspects including health literacy, knowledge, cultural issues and distrust of the medical system.

The qualitative findings point to the unambiguous and often-quoted notion that poor health outcomes are intrinsic to social and behavioral dimensions of life, with grinding poverty the common thread between urban Blacks/African-Americans and rural isolated Whites. The Affiliate doesn't know how much to attribute disparities to each contributing domain - race itself, racism, education, health systems, or poverty - but the Affiliate does have clues about what must be done.

For breast cancer, secondary prevention - finding disease before clinical signs - is the best weapon the Affiliate has to combat death and morbidity. But preventive care is seldom part of the medical culture among at-risk women. Lack of prevention practices is the major barrier to the breast cancer continuum of care, and the first paradigm that must be changed. A second barrier, and related to prevention, is the unfilled urgent need for medical homes for everyone. A trusted, competent, and caring primary care provider can usher patients into prevention practices, including early detection, and provide information to dispel incorrect health beliefs.

172 | Page Susan G. Komen® Upstate New York November 2017

Third, information and support from culturally sensitive, knowledgeable, and trusted peers is a safety-net requirement to bring women into the continuum of care. The Syracuse "She Matters" program is demonstrating early quantifiable success with using trained Resident Health Advocates who advise and encourage neighbors to participate in screening. "She Matters" has the distinct advantage of offering state-of-the-art mammography technology for program participants.

Finally, faith-based communities and decision-making present a double-edged sword. These groups are strong positive influences in their communities, and provide diligent and lasting support. But when women rely solely on spiritual interventions for health outcomes they may reduce their chances for survival. It's important for the Affiliate to develop more relationships with faith-based groups, not only to help more women, but also to help these women reconcile taking advantage of medical advances without compromising their religious convictions.

The Affiliate identified several strengths and weaknesses with data sources and methodology:

Strengths: 1. Agency and program sources had a wealth of knowledge and experience. They gave generously of their time to add a depth of understanding to findings. 2. Speaking with key informants in the same positions in all target areas gave us a good idea of similarities and differences upon which to base suggestions to improve access. 3. Although the Affiliate did not attempt to conduct focus groups of at-risk women ourselves, the Affiliate was able to share the findings of a landmark program in urban Syracuse, "She Matters," a Komen funded program.

Weaknesses: 1. As with non-probability qualitative methods, findings from these key informant interviews lack generalizability to a broader population. Key informant sources may not accurately represent the populations they are describing due to selection, recall, and interviewer biases. Likewise, information bias can result from the manner in which the interviewer asks questions. 2. Because the target communities had elevated rates of late-stage diagnosis, the Affiliate’s inquiry methods focused on barriers to entering the continuum of care, through screening and diagnosis. The Affiliate did not delve into treatment and follow-up care aspects of the continuum. 3. The provider survey had a very low response rate, despite attempts to engage respondents through pre-invitation phone calls. Out of 89 potential provider contacts, 22 invitations were sent by e-mail with two responses as of Jan 30, 2015. A total of 67 contacts did not receive invitations to complete the survey. Reasons for inability to contact providers are as follows: 19 received a message on voice mail but did not respond, 15 indicated they don’t do surveys or had no one to answer the survey, 13 did not answer the phone, nine were an incorrect phone number, six said they do not give out e-mails, four said they will the return call but didn’t, one was a homeless shelter. This restricted the ability to triangulate key informant findings. 4. For key informant interviews, access to clinical providers in the Affiliate area was also challenging due to their full work schedules. A more convenient approach could be to

173 | Page Susan G. Komen® Upstate New York November 2017 interview provider key informants at non-work venues, such as professional development sessions. 5. For Seneca County, with one provider, four interviews had to suffice.

Conclusions Efforts to reduce breast cancer's toll continue amid a background of controversy, criticism, and misunderstanding. The value of clinical breast exams is regarded differently by various organizations. Mammography screening schedules and age recommendations are in flux, resulting in inconsistent recommendations. Screening has been blamed for causing unnecessary surgery on small cancers that would have gone away on their own, and for causing undue stress from false positive findings. Yet death from breast cancer inches downward, and critics of mammography don't say how to identify breast cancers that would have been potentially harmless. New Affordable Care Act provisions that entitle all women to equal screening access for the first time will face threats of dismantling with changes in political leadership.

Screening mammography is an evolving science that is growing in accuracy and diagnostic power, both from machines and their interpreters. New 3-D technology appears to find more early cancers with 15 percent fewer false positives (Friedwald et al., 2014). Screening is the starting point to help save lives of women in the Affiliate’s target areas by capturing breast cancers at early stages. Yet, preventive health care of any sort is an uncommon practice. Breast cancer screening for early detection represents a siloed effort in a landscape where broad participation in preventive care is lacking.

But the Affiliate has good evidence that suggests ways to bring women into the continuum of care, beginning with screening. Encouragement from primary care providers is highly preferred, but barring that, one-on-one and small group support and education provided by respected advisors, such as those in the "She Matters" program, have been effective. Helping women in their own communities, such as church groups, is key, but women also deserve the best technology available. These approaches should help to allay fears, build trust, and remove other barriers that prevent best possible outcomes for breast cancer diagnoses.

Twin Tiers Region Tioga County, NY As indicated in the Quantitative Data Reports and Health Systems and Public Policy Analysis section of this Community Profile, the incidence of late-stage diagnosis in Tioga County NY is trending slightly upwards even as this incidence is trending lower in the Twin Tiers Region as a whole and in the state of New York as a whole. The reason for this trend seems linked to the lack of breast health care providers within the county or easily accessible in contiguous counties, particularly within and from the very rural northern sections of the county.

The strength of the data sources and methods utilized, namely the key informant interviews and survivor surveys, is primarily the knowledge of both groups of the issues, either as employees of health care providers or of regional health-support organizations, in the case of key informants, or as patients, in the case of women over 40.

174 | Page Susan G. Komen® Upstate New York November 2017 The weakness of the key informant interview method is the small number of key informants, given the small number of breast health care providers located within Tioga County and the relatively small number of organizations that provide services to residents of the county. This led to an over-reliance on the responses of three key informants, in particular. Despite sending out over 150 surveys for women over 40 and despite having the survey available for free online, none were completed and returned.

Despite these limitations of the data, 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 the campus of Guthrie, the largest health care provider in adjacent Bradford County, PA and to the facilities of Lourdes Hospital and United Health Services in adjacent Broome County, NY, all of which have breast cancer facilities. 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.

In conclusion, breast health resources are less available and accessible in the predominantly rural northern communities of Tioga County. These shortcomings most likely play a role in the increase in late-stage diagnoses identified in Tioga County.

Bradford County, PA As indicated in the Quantitative Data Reports and Health Systems and Public Policy Analysis section of this Community Profile, the incidence of late-stage diagnosis in Bradford County PA is trending slightly upwards even as this incidence is trending lower in the Twin Tiers Region as a whole and in the state of Pennsylvania as a whole. The reason for this trend seems linked to the lack of breast health care providers particularly in the very rural southern sections of the county. In addition, breast cancer survivors who responded to the survey highlighted a further issue, namely the lack of breast cancer patient and survivor counseling and support services.

The strength of the data sources and methods utilized, namely the key informant interviews and survivor surveys, is primarily the knowledge of both groups of the issues, either as employees of health care providers, in the case of key informants, or as patients, in the case of survivors.

The weakness of the key informant interview method is the small number of key informants, given the relatively small number of breast health care providers (10) located within Bradford County. Many of these providers are part of one health care system, namely Guthrie, however, so the responses of the five persons interviewed overlapped to quite an extent. Likewise, despite sending out over 150 survivor surveys and despite having the survey available for free online, fewer than five were completed and returned, making it difficult to extrapolate the experiences of the survivor population as a whole from the responses of so few survivors.

Despite these limitations of the data, it does appear that breast health services are less available and accessible in the rural southern sections of Bradford County than in the northern communities adjacent to the campus of Guthrie, the largest health care provider. Given that there are no major highways in Bradford County, with most roads classified as “winding country roads,” there are no large hospitals located in or near the most-rural sections of the county, and

175 | Page Susan G. Komen® Upstate New York November 2017 there are few public transport options in the county, this is not surprising. All survey respondents agreed that “family and friends” were their biggest support providers, including such practical support as transportation to and from treatment appointments. All looked as well to family and friends for emotional support and one respondent, in particular, cited a lack of counseling as an ongoing problem throughout her breast cancer journey.

In conclusion, breast health resources, including breast health information, are less available and accessible in the predominantly rural southern communities in Bradford County, and programs targeted to breast cancer survivors are generally unavailable throughout the county. These shortcomings most likely play a role in the increase in late-stage diagnoses identified in Bradford County.

Western Region Limitations of the Qualitative Data Strengths: Despite the small sample sizes in interviews and focus groups completed, participants were knowledgeable people who were familiar with the health landscape in the area, and provided great insight. To allow for a comparison of differing perspectives and experiences regarding the breast cancer Continuum of care for women in each county, the Affiliate utilized key informant interviews and focus groups as the primary data collection methods.

The Affiliate was cognizant of the unique demographic makeup of the target communities and made every effort to reach out to all populations. The City of Buffalo, located in Erie County, has a large population of low-income African American and Latinas, as well as a growing community of refugees from over 70 different countries. Cattaraugus and Allegany counties are home to members of the Seneca Nation of Indians (SNI), and some of the largest Amish settlements in New York State. The Affiliate was able to elicit some perspective from key informants on refugees, Latinas, the Amish, and Native American populations.

In an attempt to gain diverse input, informants were purposefully sampled based on type of service they provide and the location of their practice. Cattaraugus and Allegany Counties often share resources and women may travel between counties to access services. Some providers and community based organizations were able to provide insight into both counties. The Affiliate recognized the importance of primary care providers in screening mammography. Primary care providers are often the initial points of contact for patients who exhibit symptoms related to breast cancer. Their role in helping women navigate the health care system and follow up with patients who have been diagnosed is integral in ensuring successful navigation of the breast cancer Continuum of care. Informants from community based organizations provided first-hand knowledge about the community and its residents, as well as the impact that breast cancer has had on the individuals the organization serves. These organizations were essential in providing up-to date and relevant breast health education and support services, as well as facilitating navigation through the cancer care continuum.

The Affiliate wanted to assess the views of women without breast cancer to evaluate barriers they may face in accessing care, particularly in regards to early detection. Additionally, the Affiliate wanted to assess the experiences of survivors, specifically the challenges they faced throughout the cancer care continuum. In doing so the Affiliate was able to recruit women 40

176 | Page Susan G. Komen® Upstate New York November 2017 years of age and older and breast cancer survivors from three counties, one urban and two rural. Focus group participant’s demographics varied across counties allowing for effective comparisons.

The qualitative analysis confirmed findings of the quantitative and health systems analysis and offered contextual content for these findings. Major gaps in access to breast health services exist across all counties and are documented across target groups.

Weaknesses: The Community Profile Team faced some challenges with recruitment for focus groups in Erie County. A combination of complications such as poor response rates and lack of community support resulted in smaller sample sizes. Many attempts were made to schedule women and survivors for focus groups. However, despite agreement for participation and reminder phone calls, many women did not show up for the groups. Approximately 83 women 40+ and 20 survivors were recruited for participation in Erie County. In addition, recommendations and recruitment from PCPs and CBOs were utilized. Additionally, the Profile Team was unable to interview 12 cancer care informants. Many cancer treatments specialists were very busy taking care of patients in need and declined to participate in an interview due to time constraints. Others did not respond to outreach attempts from the Team.

The Team encountered some difficulties with recruitment for focus groups for women 40 and over and survivors in Cattaraugus and Allegany Counties. These areas are particularly rural and it can be difficult for women to travel great distances. The Team reached out to Cancer Services Program and the Health Department in these counties as well as recommendations from CBOs and PCPs to assist with recruitment. The small amount of focus groups can be attributed to several obstacles in recruitment such as poor response rates, a small county population, and few community supports in the area. In addition, there is only one cancer treatment center in the area. There are few community based organizations as well. Though few primary care practices exist in the region, the Affiliate attempted to reach out to the majority of practices. However, there were very little responses to outreach attempts.

The Team was unable to complete any focus groups in Wyoming County due to poor response rates, a small county population, and few community supports in the area. Wyoming County shares many resources and services with adjacent Livingston County that is currently out of the Komen WNY’s target area. Identifying primary care providers within the boundaries of Wyoming County proved challenging. Few screening options exist in Wyoming County with no cancer treatment options at all. The county has limited community based organizations or support resources. Though few primary care practices exist in the region, the Affiliate attempted to reach out to the majority of practices. However, there were very little responses to outreach attempts.

Cattaraugus and Allegany Counties Cattaraugus and Allegany counties are located in the Southern Tier of Western Region and are defined as rural and medically underserved. The two counties share similar demographics, frequently collaborating in delivering services such as a combined New York State Cancer Services Programs. The health systems analysis investigated the availability of breast cancer services and programming in Cattaraugus and Allegany Counties. Two large healthcare systems were identified as available to women in both counties. In terms of treatment, there are

177 | Page Susan G. Komen® Upstate New York November 2017 few options; only one organization in Cattaraugus County, located in Olean, offers chemotherapy treatment. Two hospitals in Allegany County offer screening mammograms. Other community based organizations are present, and great resources to the communities. Organizations that provide education and support programs include the Health Department and the Breast and Cervical Health Partnership. The Affiliate successfully reached out to several community based organizations in the region. The informants were knowledgeable about the community and its residents, as well as the impact that breast cancer has had on the individuals the organization serves. The quantitative report recognized Cattaraugus County as having the second largest percentage of Native Americans in New York State as well as a significant Amish population. Two informants shared valuable insight on both populations and their access to the breast cancer Continuum of care. Although few primary care and cancer care treatment centers are present in either county, the Affiliate successfully reached out to a number of institutions identified in the health systems analysis.

In rural areas such as these, the distance between breast cancer screening and treatment providers is a major barrier, often compounded by financial limitations faced by low-income residents. Transportation gaps continue to pose an issue for women in these counties seeking access to services, a major contributor to the lack of screening in these areas. Women seeking services must travel great distances to surrounding cities to access care. No standard mass transit exists in these counties. This is a concern across the Continuum of care from screening through to treatment and supportive care. Due to the limitation of availability, many patients are referred to hospitals or larger organizations outside of the target area to receive screening and/or diagnostic follow-up. Recently, Cattaraugus County began utilizing a mobile mammography unit. The presence of the unit should address transportation, financial, and availability barriers that currently prevent many women from accessing breast health services in both Allegany and Cattaraugus County. Moreover, patient navigation and survivorship services are a valuable resource for women transitioning through the Continuum of care. Patient navigation services are severely lacking in Cattaraugus County, along with support and survivorship services.

The Affiliate concludes that building a relationship with the Seneca Nation and Amish communities in Cattaraugus County is essential to encourage breast healthcare. Continuing to provide funding and support to programs such a mobile mammography unit alleviates some of the barriers women face in Allegany and Cattaraugus counties. Promoting patient navigation, support groups, and survivorship efforts in the counties is vital.

Erie Erie County is comprised largely of the city of Buffalo and surrounding suburbs. Erie County represents the most diverse population in the Affiliate service area. The quantitative report indicated that African American women face higher death rates from breast cancer when compared to other races. Social and economic barriers to breast cancer screening and treatment are higher for residents of Erie, making access to resources incredibly challenging for many residents.

In order to best understand what interventions might help to improve the trends in death rates and late stage diagnoses, the health systems analysis section of this report identified the types of breast cancer services available and to what communities. Of all the counties in this service

178 | Page Susan G. Komen® Upstate New York November 2017 area, Erie County hosts the largest number of options for screening and treatment. Although many resources and support services are available to women in Erie County, fewer mammography facilities exist in the city of Buffalo. Multiple mammography sites have moved from the City of Buffalo to surrounding suburbs.

The increase in relocation of screening sites has created a barrier to accessible screening and treatment options as public transit may not always reach these areas and many women lack personal transportation. This section of the report aimed to investigate this trend in addition to the many other factors that contribute to the breast cancer burden in Erie County. From the quantitative report, the Affiliate examined diverse and varied services that are available to help combat the social and cultural barriers that prevent many minority women from seeking or successfully accessing breast cancer services. The health systems analysis identified many agencies and organizations serving minority and underserved women in the city of Buffalo. Community based organizations were identified based on their awareness about the community, as well as the impact that breast cancer has had on the individuals the organizations serves. These organizations provided a critical role in facilitating navigation through the cancer care continuum, providing education about cancer risk reduction, screening and treatment, and offering support for those with a diagnosis. Striving to gain diverse input, providers were purposefully sampled based on type of service they provide and the location of their practice. Primary care providers and cancer care providers were included as well to reflect the findings from the health systems analysis that provided any type of direct clinical care to women in Erie County.

A mobile mammography unit has been present in the community for two years. The health systems analysis researched what populations and neighborhoods the unit reaches, driving the direction of the qualitative section. The unit reaches African American and Latina women in Erie County. Many informants indicated the success and value of utilizing such a resource in the community. Additionally, organizations using the unit provide peer support and education materials available for underserved communities. Cancer Services Program of Erie County is instrumental in engaging uninsured and underinsured women in cancer screening, follow-up and treatment. The presence of CSP and its services are still relatively unknown to women in Erie County. The qualitative section suggested that promotion efforts emphasizing the benefits of using the program may need to be increased, particularly in doctor’s offices. Patients and providers alike were aware of the breakdown in the continuum of cancer care.

The Affiliate concludes that increasing access to navigation at the screening level is imperative to engage women in the Continuum of care. Many women in underserved communities have limited access to technology and cannot navigate the complex health system. The mobile mammography unit and its partners are some of the strongest partnerships the Affiliate collaborates with in the area, especially in underserved communities. It is important for the Affiliate to continue to fund programs to address barriers due to knowledge, access and availability. Furthermore, maintaining existing partnerships as well as building new relationships in the future.

Wyoming The quantitative data section indicated the socioeconomic characteristics of the region were potential concerns regarding women’s access to breast health care. Just over 31 percent of

179 | Page Susan G. Komen® Upstate New York November 2017 residents fall below 250 percent of the poverty line. The county was defined as rural and medically underserved, indicating that both income and physical distance from screening and treatment locations were barriers to breast health services for the women of Wyoming County. The health systems analysis component took a deeper look at the available breast health services in Wyoming. There were two primary health care systems in the region, one of which provided screening mammography. The Affiliate conducted a key informant interview with a provider from the institution that provided breast screening services. Cancer Services Program has a large presence in Wyoming County, assisting women with financial and transportation barriers to care. The Affiliate was able to reach out to the program coordinator of CSP as well as the public health administrator of the Health Department. Due to the region’s rural nature and designation as medically underserved, it was vital to gain a clear understanding of how breast health services are currently accessed in the region.

Wyoming County has very few screening options and no cancer treatment options at all. Increased cancer services such as treatment centers, navigation, survivorship resources, and support groups are vital to ensuring women successfully enter the breast cancer Continuum of care. Cost and transportation continue to be a barrier for women in Wyoming County. Services are either inaccessible due to location or do not exist in the county.

Based on the analysis of what is currently available for women to access screening for early detection, and for treatment, the Affiliate concludes that continuing to interface with the county to develop relationships among primary care practices and key partners. Marketing Community and Small Grant Programs to support programming and services that encourage education, awareness, screening and treatment for this target area is essential to address the barriers of access to the breast cancer Continuum of care.

180 | Page Susan G. Komen® Upstate New York November 2017 Mission Action Plan

Breast Health and Breast Cancer Findings of the Target Communities

Central Region Monroe County Monroe County has the highest percentage of Black/African-American and Hispanic/Latina women in the service area and the highest age-adjusted death rate from breast cancer in the service area, higher than the death rate in the service area as a whole and higher than that of New York State. In addition, the breast cancer incidence rate is significantly higher than the service area as a whole. The county was assigned the “highest priority” based on predicted time to achieve HP2020 targets (13 years or longer) for both death rate and late-stage diagnosis rate.

Black/African-American women in Monroe and Onondaga Counties Black/African-American women in these two counties are historically disadvantaged regarding health care in general and breast cancer care in particular. Black/African-American women have higher age-adjusted death rates and late-stage diagnosis rates than the corresponding rates in the United States, New York State and the Central Region. Both Monroe and Onondaga Counties have high percentages of Black/African-American women who have long been a target for intervention by the Affiliate. The need for serving this population of women persists.

Seneca County Seneca County has a high age-adjusted breast cancer death rate, according to the QDR and also according to New York State registry data. The county was also cited for a significant positive trend of a 21.4 percent annual increase in the death rate over time, as well as a high late-stage diagnosis which has increased 3.7 percent per year. Furthermore, Seneca County was identified as a highest priority area based on achievement of HP2020 targets for both death rate and late-stage diagnosis rate.

Taken together, the findings from the quantitative data report led the Affiliate to choose Monroe, Onondaga and Seneca Counties as geographical areas with the most immediate breast cancer needs. In addition, Black/African-American women represent a demographic group who experiences a number of important disparities in several key breast health indicators.

Each target area boasts a number of strengths as well as several weaknesses in breast cancer care. Among Monroe County’s strengths are a number of high quality health and cancer care providers; a strong Cancer Services Program that provides screening, brings underserved women into the continuum of care, and collaborates with organizations to reduce racial disparities; and new screening mammography offered at the Holland St. Anthony Jordan Clinic, providing the only neighborhood screening in Rochester’s “crescent of poverty” area. Weaknesses in Monroe County include a lack of breast health services in proximity to the city’s poor Black/African-American population and the recent consolidation of providers into just two health/hospital systems which creates uncertainty for inner city poor women of color.

Onondaga County strengths also comprise a number of high quality of health cancer care providers, including a new Cancer Center at Upstate University Hospital. There is also state-of- 181 | Page Susan G. Komen® Upstate New York November 2017 the-art mammography technology within walking distance for some of the county’s poor Black/African-American population. Among the weaknesses in Onondaga County are a free clinic that serves the poor “near west side” that still uses analog technology for mammograms, and is described as resource-poor and crowded, with a shrinking referral base; a mobile mammography unit that has not been replaced; a poor understanding of breast health issues among refugees from diverse cultures; and a lack of coordination and leadership among the county’s breast cancer support services.

In both Onondaga and Monroe Counties, Black/African-American women do not receive the best breast health care. This may be due to low health literacy/knowledge, cultural and/or language issues, geographic and other access barriers and a distrust of health care in general. The Affiliate needs to determine where in the continuum of care the system fails these communities. In addition, there are racial and ethnic disparities in health insurance coverage in the state. The majority-white demographic composition of the Affiliate service area may hide the lack of insurance in targeted communities of color. In addition, a sizeable portion of low- income women of color residing in Monroe and Onondaga Counties qualifies for Medicaid but does not receive these benefits. And, many providers do not even accept Medicaid. The Affiliate has historically provided a safety net for women who are unable to access breast health services by referring women to providers who do accept Medicaid. Going forward, Black/African-American women need to be included in health care plans under the ACA that now provide mammography and other screening services.

Seneca County’s strengths include proximity to excellent medical services in nearby large cities and excellent collaboration among providers and the CSP across the three-county area. Weaknesses within Seneca County include a paucity of health facilities within this very rural county, resulting in transportation barriers for many county residents, and a low utilization of services by Amish and Mennonite communities. Given the paucity of services located in this rural county, women must travel long distances to receive breast health services. This is a common experience for rural women throughout this county, many of whom must seek care in neighboring counties

Analysis of the quantitative report raised several key questions regarding the findings. What factors may be associated with the high death rate and late-stage diagnosis rate among Black/African-American women? Do the point estimates for mammography rates for Black/African-American and rural women reflect their actual experiences within their communities? Recent evidence suggests that high quality treatment rather than screening is responsible for observed reductions in breast cancer death (Jorgensen, 2012). What factors may be responsible for higher death rates and late-stage diagnosis rates? Might higher death rates and trends be attributable to lack of access to high-quality breast cancer care after the diagnosis is made? If so, should access to high quality treatment be assigned a higher priority? Are services available that may improve access to high quality treatment, such as navigation assistance, and how might this service be utilized more effectively by women in target communities? What are the breast health needs of rural women that may be different from those of underserved urban women? Are other sub-populations that were not captured in the quantitative data report, such as the substantial and growing population of refugees in the Affiliate service area, receiving information regarding breast health services and are they accessing these services?

182 | Page Susan G. Komen® Upstate New York November 2017

The Quantitative and Health System/Public Policy analyses provided several key questions specific to the Affiliate's overarching concern of "Where in the continuum of care does the health system fail at-risk populations for breast cancer?" For the three target communities (urban Monroe and Onondaga Counties, and rural Seneca County) the Affiliate asked:  What factors might be associated with elevated death rates and late-stage diagnosis rates among urban Black/African-American women?  Are these elevated death rates primarily attributable to lack of early diagnoses, or more so to lack of high-quality care after a breast cancer diagnosis?  To utilize high quality treatment, are necessary services such as navigation assistance available to provide access?  For rural underserved women, what unfulfilled breast health needs exist?  How will provisions of the Affordable Care Act affect access and outcomes in breast cancer in the Central Region?

Additionally, the preliminary analyses highlighted three additional and important issues related to the Central Region. First, wide confidence intervals for breast health estimates in sparsely populated counties suggest that the Affiliate question whether these data reflect reality. Second, the Affiliate must consider whether findings from one small rural community are generalizable to the extensive rural populations in the 17-county Central Region. Third, the Affiliate is cognizant of ever-growing refugee populations in urban areas of several Affiliate counties. These groups are diverse and face unique language and cultural issues.

Data collection methods included key informant interviews and a provider survey, both of which were intended to optimize Affiliate resources. For key informant interviews, the focus for Monroe County was narrowed to urban Black/African-American women in the city of Rochester. This reflected Monroe County's extensive initiatives to provide breast health services to underserved urban women of color, and it allowed comparisons with the same target population in the city of Syracuse, Onondaga County. For rural Seneca County, interviews with local providers and experts represented the first Community Profile assessment of this demographic for the Affiliate, hopefully adding the potential to generalize findings to the many rural counties in the Central Region catchment area. The limited response rate for electronic provider survey illustrated a need to find alternate methods to gain necessary provider input on access and utilization patterns and barriers from the provider perspective.

To summarize, the qualitative sources for both urban and rural target communities concurred that for breast cancer, secondary prevention - finding disease before clinical signs - is the best weapon the Affiliate has to combat death and morbidity. But screening and breast health care are seldom part of the medical culture among at-risk women. Lack of prevention practices is the major barrier to the breast cancer continuum of care, and the first paradigm that must be changed. A second barrier is the urgent need for medical homes. A trusted, competent, and caring primary care provider can be the gateway to prevention practices, including screening, and can provide information to dispel incorrect health beliefs. Information and support from culturally sensitive, knowledgeable, and trusted peers is a third path to bring women into the continuum of care. The Syracuse "She Matters" program is demonstrating early quantifiable success with using trained Resident Health Advocates who advise and encourage neighbors to participate in screening. For urban at-risk women, decision-making based upon religious beliefs

183 | Page Susan G. Komen® Upstate New York November 2017 presents a double-edged sword. Faith groups are strong positive influences in their communities, but when women rely solely on spiritual interventions for health outcomes they may reduce their chances for survival. Can the Affiliate, by developing relationships with faith- based groups, help women reconcile prevention practices with their religious convictions? Screening may help save lives of women in the Affiliate’s target areas by capturing breast cancers at early stages. New 3-D technology appears to find more early cancers with 15 percent fewer false positives. However, participation in screening of any sort is an uncommon practice among the urban and rural target communities in the Central Region, and breast cancer screening for early detection represents a siloed effort in a landscape where broad participation in early detection or screening care is lacking. Will the Affordable Care Act provisions for access to screening effectively increase screening percentages among underserved women in the Central Region?

In conclusion, the Affiliate's qualitative investigations provided strong evidence that suggests effective ways to bring at-risk women into the continuum of care, beginning with screening. Encouragement and follow-up from primary care providers is highly preferred, but barring that, one-on-one and small group support and education provided by respected advisors, such as those in the "She Matters" program, show compelling early results. Helping women in their own communities, such as church groups, is key but women also deserve the best technology available. Will these approaches help to allay fears, build trust, and remove other barriers that prevent best possible outcomes for breast cancer diagnoses?

Northeastern Region Albany and Schenectady Counties Albany County is predicted to take 13 years or longer to achieve the Healthy People 2020 late- stage incidence target. Albany County is predicted to take one year to achieve the death rate target for HP2020. Because of the projected time to achieve these targets, Albany County has been identified as a medium high priority county. In Albany and Schenectady Counties there is a large Black/African-American population.

Schenectady County is predicted to take 13 years or longer to achieve the Healthy People 2020 late-stage incidence target. Schenectady County is predicted to take four years to achieve the death rate target for HP2020. Because of the projected time to achieve these targets, Schenectady County has been identified as a medium high priority county.

In Albany and Schenectady Counties there were 43 locations that provided breast cancer services varying between screening, diagnostic, treatment, and survivorship. There were 21 locations providing screening services, 13 locations providing diagnostic services and nine locations providing treatment services. In the entire county, there were 27 locations that provided survivorship services or care.

Franklin County Franklin County is predicted to take 13 years or longer to achieve the Healthy People 2020 late- stage incidence target. Franklin County is predicted to take two years to achieve the death rate target for HP2020. Because of the projected time to achieve these targets, Franklin County has been identified as a medium high priority county. Key population characteristics for Franklin

184 | Page Susan G. Komen® Upstate New York November 2017 County include a large number of American Indian/Alaskan Natives, low education, medically underserved and rural populations.

In Franklin County, there were nine locations that provided breast cancer services varying between screening, diagnostic, treatment, and survivorship. There were eight locations providing screening services, three locations providing diagnostic services and two locations providing treatment services. In the entire county, there were four locations that provided survivorship services or care.

Fulton County Fulton County is predicted to take 13 years or longer to achieve the Healthy People 2020 late- stage incidence target. Fulton County is predicted to take two years to achieve the death rate target for HP2020. Because of the projected time to achieve these targets, Fulton County has been identified as a medium high priority county. Additionally, Fulton County has relatively high rural population, high unemployment as well as those with low education levels.

Montgomery County Montgomery County is predicted to take 13 years or longer to achieve the Healthy People 2020 late-stage incidence target. Montgomery County is predicted to take one year to achieve the death rate target for HP2020. Because of the projected time to achieve these targets, Montgomery County has been identified as a medium high priority county. In Montgomery County, there is a large number of Hispanic/Latina, low education, medically underserved and rural populations.

Saratoga County Saratoga County is predicted to take 13 years or longer to achieve the Healthy People 2020 late-stage incidence target. Saratoga County is predicted to take eight years to achieve the death rate target for HP2020. Because of the projected time to achieve these targets, Saratoga County has been identified as a high priority county

185 | Page Susan G. Komen® Upstate New York November 2017 Twin Tiers Region Twin Tiers Region Community Profile Team chose two target counties, namely Bradford County, Pennsylvania and Tioga County, New York, to study in depth to assess whether greater resources could impact the outcomes for those affected by breast cancer in these counties. As discussed in the Quantitative Data section of this community profile, target counties are those which have cumulative key indicators showing an increased chance of vulnerable populations likely at risk for experiencing gaps in breast health services and/or barriers in access to care.

To select these target counties, the Community Profile Team reviewed Healthy People 2020, a major federal government initiative that provides specific health objectives for communities and the country as a whole. As discussed in the Quantitative Data section, areas of priority were identified based on the time needed to meet Healthy People 2020 targets for breast cancer.

The rate of late-stage breast cancer diagnosis, one of the key indicators tracked in Healthy People 2020, is trending slightly upwards in both Bradford County, PA and Tioga County, NY, even as the trends in the Twin Tiers Region as a whole, the States of Pennsylvania and New York, and the US as a whole are falling slightly. More significantly, neither county is expected to meet the Healthy People 2020 late-stage diagnosis goal of 41.0 per 100,000. For this reason, Bradford County, PA and Tioga County, NY were chosen as the target counties.

To determine why the late-stage breast cancer diagnosis is trending upwards in these target communities, the Twin Tiers Region Community Profile Team analyzed the health systems of each. Bradford County is home to a large breast care center plus two other hospitals, several clinics offering diagnostic services and a medical supply depot. In addition, a Komen grantee helps fund mammograms in the county. Despite these many breast health services, no breast cancer-specific survivor programs are available in Bradford County.

In contrast to Bradford County, there are no hospitals located within Tioga County, NY. Further, only very limited screening services and only one location offering limited treatment options are available. As a result, Tioga County residents requiring diagnostic services or, with one exception, treatment must travel outside the county or rely on periodic visits from a mobile mammography provider. Additionally, there are no programs for survivors available in the county. Patients requiring screening and diagnostic services, treatment and post-treatment services must drive or be driven by relatives or friends, as only limited public transit options are available, especially from the more rural northern portion of the county and when county or state lines must be crossed.

Of help to women over 40 in Tioga County, NY who satisfy the program requirements is the availability of the Cancer Services Program, a New York State funded program that provides no cost/low cost mammograms, pelvic exams and pap tests. CSP covers screening via mobile mammography, if other program requirements are met.

Similarly, Pennsylvania’s Healthy Woman Program provides breast and cervical cancer screening and treatment services to women who meet income eligibility requirements. According to Census and CDC estimates, however, many more women are eligible for the HWP screening services than program funding can currently satisfy.

186 | Page Susan G. Komen® Upstate New York November 2017 Key informant interviews and surveys of the target population confirmed that transportation is a key barrier to care in Tioga County, NY. This is particularly true in the more rural, northern portion of the county. Similarly, key informant interviews and surveys of the target population highlighted that transportation is a barrier to care in the predominantly rural, southern portion of Bradford County, PA. In addition, breast cancer survivor programming is absent in both counties.

Western Region Quantitative data from the national office of Susan G. Komen, and data obtained through a direct request from the New York State Cancer Registry, were reviewed to identify service gaps and areas of need in Western New York. The Western Region is comprised of eight counties: Allegany, Cattaraugus, Chautauqua, Erie, Niagara, Genesee, Orleans, and Wyoming. Data on death rates from breast cancer and late stage diagnoses were used to help determine target communities with the most need within the Western New York service area. The overall need is based on the time it will take a particular area to meet Healthy People (HP) 2020 targets for breast cancer.

Communities with high rates of late stage diagnoses, below average screening rates, high rates of residents living below poverty level, and high rates of residents living without health insurance were selected as target areas. Of the eight counties in the Affiliate’s service area, four target communities were selected: • Erie County • Cattaraugus County • Allegany County • Wyoming County

The Affiliate’s objective is to reduce breast cancer death rates and late stage diagnoses in the service area.

Erie County has been identified as a high priority county due to the amount of intervention time needed to achieve the HP2020 targets. Erie County includes the city of Buffalo and is the largest and most diverse county in the service area. In general, the minority population in Erie County is higher than the rest of the service area, with 14.8 percent Black/African-American residents and 4.6 percent Hispanic/Latina residents. The quantitative report indicated that African-American women face higher death rates from breast cancer compared to other races. African American and Hispanic/Latina women are significantly less likely to be diagnosed at an earlier stage than White women.

Cattaraugus County is classified as a rural and medically underserved area, with 93.9 percent of the total female population comprised of White women and 38.9 percent of the county residents falling below 250 percent of the poverty line. There are also large Native American and Amish populations located in the county. Cattaraugus County falls into the medium priority guidelines for HP 2020 objectives.

Allegany County’s population and geographic demographics are comparable to neighboring Cattaraugus County, with 39 percent of county residents falling below 250 percent of the poverty line, and 49.5 percent of the total female population over the age of 40. Due to the similarities and geographic proximity between the two counties, they often collaborate in delivering services. Allegany County falls into the medium-high priority area for HP 2020.

Wyoming County is the least populated county in the service area, with a majority of the county’s female population being White and over the age of 40. Over 31 percent of county

187 | Page Susan G. Komen® Upstate New York November 2017 residents fall below 250 percent of the poverty line. Wyoming County is unlikely to achieve HP2020 objectives for breast cancer. Several factors contribute to this estimation, with economic and barriers to accessing breast health services among the greatest obstacles.

Health Systems Analysis The Health Systems and Public Policy Analysis conducted in these four communities indicated a lack of access to cancer care providers and breast health services across the continuum of cancer care in rural communities in Cattaraugus, Allegany and Wyoming, and the urban communities in Erie County.

Support for individuals and navigation through the complex healthcare system is also lacking, particularly for screening and pre-diagnosis. The lack of awareness of community resources (where they exist) is a challenge for women, and also for primary care and cancer care providers.

The largest number of screening and treatment options available to women accessing the continuum of care was in Erie County. Many organizations in Erie County provide a variety of educational and support services to residents, particularly serving underserved communities. Erie County also has the most options for cancer care services of the target areas.

Despite the many resources available, fewer mammography facilities exist inside the city of Buffalo, but instead are located in surrounding suburbs, making access to them difficult for women living in the city.

In Cattaraugus County, there are limited breast health resources. Community-based organizations play a vital role in offering breast health support to women, with most of the education being provided by the two large healthcare systems. However, few cancer care treatment options are available to women in Cattaraugus County. Only one organization, located in Olean, offers chemotherapy treatment.

Allegany County shares many resources and services with neighboring Cattaraugus County. The same two healthcare systems serving Cattaraugus County residents also serve Allegany County residents. Treatment options are even more limited to women living in Allegany County, and they often travel great distances to neighboring counties in order to access treatment services.

Wyoming County severely lacks breast cancer screening, treatment, and support services. Only one location in the county offers mammograms. Currently, no treatment centers exist in Wyoming County. Due to Wyoming County’s rural geography, residents must travel substantial distances outside of Wyoming to adjacent counties in order to access screening and treatment care.

This analysis also looked at the public policies that affect progress through the Continuum of Care. The New York State Cancer Services Program (CSP) offers education, screening, diagnostics, case management and treatment assistance for breast, cervical and colorectal cancers. It currently has a presence in every county in the Affiliate’s area, and is an asset to under and uninsured women age 40 and over, and those under 40 who are at high risk for breast cancer, as well as those who receive a diagnosis.

NYS Medicaid covers mammography and medically necessary radiology services for those eligible. The New York State Comprehensive Cancer Control Plan 2012-2017 was also created by the NYS Cancer Consortium (NYSCC), as a guide to identify and address the cancer burden in NYS. The plan has identified several priority areas including: health promotion and cancer risk reduction, early detection, treatment, survivorship, palliative care, and the health care

188 | Page Susan G. Komen® Upstate New York November 2017 workforce. The health systems analysis component took a deeper look at the available breast health services in the service area, and the relative NYS public policies. Leading to multiple questions:

 How do these system and policy barriers contribute to late stage diagnosis?  Do the system and policy barriers present the same way in each target community?  What is the interplay of culture, knowledge and social determinants of health that compound access issues?

Qualitative Data The qualitative analysis highlighted the challenges within the cancer care continuum for underserved women and stressed a need for education in a cultural context that addresses access to care, barriers to screening, and availability of services in hopes of making an impact on breast cancer deaths. The Affiliate gauged perspectives of primary care providers, cancer care providers, and community based organizations, using key informant interviews and focus groups. Furthermore, breast cancer survivors and women 40 years and older that are eligible for mammograms contributed to the findings through focus groups.

Major barriers to breast screening existed in each target area, which could decrease opportunities for early detection. Similar and recurring barriers were noted across the counties. Financial and transportation barriers were consistent issues that women face in accessing quality breast health services. Cost and insurance status were identified as main concerns inhibiting women from accessing services. The cost of co-pays or potential out of pocket costs for uninsured and underinsured women can deter them from accessing services. A lack of available breast health services further prevented women from accessing services. Inconvenient locations required women to travel great distances to screening and treatment sites, leaving women often unable to afford the cost of travel. Public transportation was not always a reliable alternative for many women in the rural areas.

In all target areas, fear was a prevalent deterrent for many women from seeking services. Women were fearful of the mammogram procedure itself, having endured painful experiences in the past, and were afraid of the potential for positive findings.

A lack of appropriate breast health knowledge inhibits many women in the target communities from recognizing the importance of breast screening and early detection. Several sources, including primary care physicians, community based organizations, and media outlets, provided a variety of breast health education to residents. Increasing availability and access to breast health education can aid in reducing fears and improve breast screening rates.

The data generated from the qualitative section led to several questions that the Affiliate aims to address in the Mission Action Plan:

 How can the Affiliate assist in the education of women and their providers?  How can the Affiliate aid in reducing the transportation and financial barriers rampant in the target communities that prevent many women from seeking and accessing quality breast health care?  How can the Affiliate increase screening and early detection rates in the target communities?  In what ways can the Affiliate assist in generating greater resources and support services to women in the target communities?

189 | Page Susan G. Komen® Upstate New York November 2017 Mission Action Plan

Note: Some of the objectives below were accomplished by the individual four affiliates prior to the formation of Komen Upstate New York.

CENTRAL REGION Black/African-American women in Onondaga and Monroe Counties, NY Problem In the context of longstanding disadvantages regarding health care in general and breast cancer services in particular, Black/African-American women continue to experience high late-stage diagnosis and death rates, as indicated in the Central Region Quantitative Data Report. The health systems and public policy analysis and the qualitative analysis reveal that even in those areas where services are close to where they live, Black/African-American women in Onondaga and Monroe Counties face other barriers include fatalism, low health expectations, and competing health, psychosocial and economic problems.

Objectives In FY 18-19, reach out to two predominantly Black/African-American faith-based organizations in Onondaga and Monroe Counties to hold breast health community outreach presentations.

Objective In FY 18-19 a key funding priority will be to develop and/or improve navigation services to facilitate movement through the continuum of care - from primary care

190 | Page Susan G. Komen® Upstate New York November 2017 and screening through post-treatment support - for women of color provided by urban Black/African-American women in Rochester/Monroe County.

Priority Increase the availability and accuracy of information for women in Seneca County regarding the importance of early screening, treatment of breast cancer and the services accessible to them.

Priority Increase access to breast cancer services for Black/African-American and foreign-born women residing in Albany and Schenectady Counties.

From FY2017 through FY2019, Komen Upstate New York will work to facilitate partnerships between organizations who serve the target populations and organizations who have expertise in breast cancer. The partner organization will understand the unique barriers faced by the target population (Black/ African- 191 | Page Susan G. Komen® Upstate New York November 2017 American and foreign-born). The goal of the partnership is to create outreach programs which effectively link the target population to the necessary breast health education and services.

Franklin County, NY Problem Statement Franklin County is categorized as medium high priority with predicted time to achieve the HP2020 breast cancer targets and key populations characteristics. The county is predicted to take two years to achieve death rate targets and 13 years or longer to achieve late-stage incidence targets for Healthy People2020. This county also has a large rural, low-education, medically underserved and American Indian population that may have unique access barriers to breast cancer services.

Priority Increase access to breast cancer services for rural, low-education, medically underserved and/or American Indian women residing in Franklin County.

Fulton County, NY Problem Statement Fulton County is categorized as medium high priority with predicted time to achieve the HP2020 breast cancer targets and key populations characteristics. The county is predicted to take two years to achieve death rate targets and 13 years or longer to achieve late-stage incidence targets for Healthy People2020. This county also has a large rural and low-education population that may have unique access barriers to breast cancer services.

Priority Increase access to breast cancer services for rural, low-income and/or low-education women residing in Fulton County.

192 | Page Susan G. Komen® Upstate New York November 2017 Montgomery County, NY Problem Statement Montgomery County is categorized as medium high priority with predicted time to achieve the HP2020 breast cancer targets and key populations characteristics. The county is predicted to take one year to achieve death rate targets and 13 years or longer to achieve late-stage incidence targets for Healthy People2020. This county also has a large Hispanic/Latina, rural, low-education, medically underserved and high poverty populations that may have unique access barriers to breast cancer services.

Priority Increase access to breast cancer services for Hispanic/Latina, rural, low-education, medically underserved and high poverty women residing in Montgomery County.

Objectives From FY2017 through FY2019, the Community Grant Request for Application (RFA) will specify that evidence-based programs providing assistance for rural women and Hispanic/Latina women in Montgomery County to access available breast cancer services are a funding priority.

From FY2017 through FY2019, the Affiliate will work with community partners and grantees to increase access to patient navigation through lay or professional bi-lingual breast health navigators.

Priority Increase access to breast cancer services for women in Saratoga County.

193 | Page Susan G. Komen® Upstate New York November 2017 TWIN TIERS REGION Bradford County, PA Problem Statement Although Bradford County, PA is home to one of the largest health care providers in the 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 incidence 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 Upstate New York has identified the following mission priority.

Priority Increase programming and support available to all breast cancer patients and survivors in Bradford County PA throughout the Continuum of Care;

Priority Increase Komen’s presence and support in Bradford County, especially the very rural, southern regions

Objectives In 2014, identify and invite a Bradford County resident to join the Affiliate board.

In 2015, attend at least one public event in southern Bradford County including education materials with the Affiliate staff and board member participation

In 2018, plan at least one public event highlighting Komen Upstate New York’s mission and presence in Bradford County.

Tioga County, NY Problem 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.

194 | Page Susan G. Komen® Upstate New York November 2017 Priority Increase breast cancer education, programming and services available to women over 40 residing in predominantly-rural Tioga County, NY.

Objectives In 2015, meet with the breast support organizations operating in or providing services to residents of Tioga County, NY to determine how best the Affiliate can support their efforts.

By 2017, develop a funding priority for organizations providing breast-health education, programming and services in Tioga County.

Priority 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.

Objectives In 2015, identify and meet with at least one community organization to determine how best to address transportation needs from northern Tioga County;

By 2017, encourage and help one or more community organizations to apply for an Affiliate grant to address transportation needs from northern Tioga County;

Priority Increase Komen Upstate New York’s presence in Tioga County, NY.

Objectives In 2015, attend at least one public event in Tioga County, NY including education materials with the Affiliate staff and board member participation.

In 2018, plan at least one public event highlighting Komen Upstate New York’s mission and presence in Tioga County, NY.

WESTERN REGION Allegany County, NY Problem Statement Analysis of the qualitative data shows that distance to breast cancer screening and treatment services is a major barrier, impeding access to care for women in Allegany County. Two priorities were identified with objectives developed to aid in tackling the transportation barrier and lack of navigation services in Allegany County.

Priority Increase the number of women screened annually by improving access to breast health services among women in Allegany County, by 2019.

195 | Page Susan G. Komen® Upstate New York November 2017 Objective In FY 2016-2017 encourage community-based and/or health organizations in Allegany County to submit grant proposals to increase programs that aim to reduce transportation and financial barriers and improve access to breast health services.

Priority By 2019, promote peer support and patient navigation in Allegany County to increase the awareness of the importance of breast health and screening.

Objective By 2019, partner with Allegany County health organizations and local media and marketing personnel to educate the community about Komen Upstate New York’s presence and activities.

Cattaraugus County, NY Problem Statement Key informant interviews and focus groups conducted in Cattaraugus County revealed that women in Cattaraugus County have limited access to affordable and convenient breast health services, particularly screening and treatment options.

Priority By 2019, increase the number of women screened annually by improving access to breast health services in Cattaraugus County.

Priority By 2019, promote peer support and patient navigation in Cattaraugus County to increase the awareness of the importance of breast health and screening.

By 2019, promote Community and Small Grant applications in Cattaraugus County, with an emphasis on improving patient navigation, support groups, and/or survivorship.

By 2019, implement a public relations/marketing campaign around Komen- sponsored education and outreach regarding screenings and resources available for breast cancer patients and survivors.

196 | Page Susan G. Komen® Upstate New York November 2017 Erie County, NY Data obtained through the Quantitative Report and Qualitative assessment shows that underserved women in Erie County, especially African-American and Latino populations, are significantly less likely to be diagnosed at an early stage of breast cancer. The most common factors that contribute to this problem are barriers to transportation, access to breast health services, and inadequate availability of services. The Affiliate has identified two main priorities with several objectives established to help alleviate the problems:

Priority Decrease disparities in breast care services and increase the number of minority women screened annually in Erie County, by 2019.

By 2019, collaborate with other local cancer-focused agencies and the state health department in developing initiatives toward educating underserved populations about breast health.

Priority Promote peer support and patient navigation to increase awareness of the importance of breast health and screening in Erie County, by 2019.

Objectives In FY 2016-2017, promote grant proposals aiming to support patient navigation programs providing breast health guidance to women.

By 2019, identify and collaborate with four community-based and/or faith based organizations in the city of Buffalo to disseminate Komen-produced breast health information to the local community.

Wyoming County, NY Problem Statement The health systems analysis and qualitative data assessments shows that Wyoming County severely lacks breast cancer screening, treatment, and support services creating major barriers to access for women in this rural, medically underserved region.

197 | Page Susan G. Komen® Upstate New York November 2017 Priority Increase the number of women screened annually by improving access to breast health services among women in Wyoming County by, 2019.

By 2019, partner with at least two Wyoming County organizations for collaboration efforts in education of area residents and providers regarding Komen breast health standards and services.

Priority By 2019, promote peer support and patient navigation in Wyoming County to increase the awareness of the importance of breast health and screening.

Public Policy Problem Statement Data shows that many women in the target areas are not meeting screening guidelines, and are not set up to meet Healthy People 2020 objectives in the next 10 years. Because so many women in the service area are not set up to meet Health People 2020 objectives, this is a service area wide priority.

Priority By 2019, develop new partnerships to advance the Affiliate’s mission.

Objective By 2019, develop a partnership with the New York State Cancer Consortium (NYSCC) and formally join the Cancer Consortium to align with statewide initiatives.

198 | Page Susan G. Komen® Upstate New York November 2017 References

American Academy of Family Physicians (2010). Health Care Reform Law Will Increase Demand for Preventive Services, Say Experts. Retrieved from http://www.aafp.org/news/government-medicine/20100728hcreformprevent.html

American College of Radiology. (n.d.). Accredited Facility Search. Retrieved February 18, 2015, from http://www.acr.org/Quality-Safety/Accreditation/Accredited-Facility-Search

American College of Surgeons. (1996). National Accreditation Program for Breast Centers. Retrieved February 18, 2015, from http://napbc-breast.org

American College of Surgeons, & Commission on Cancer. (2012). Searching for Cancer Centers. Retrieved February 18, 2015, from https://www.facs.org/search/cancer-programs

Bergeson, S.C., Gray, J., Ehrmantraut, L.A., Laibson, T., & Hays, R.D. (2013). Comparing web- based with mail survey administration of the Consumer Assessment of Healthcare Providers and Systems (CAHPS) Clinician and Group Survey. Primary Health Care, 3, 1-15. doi:10.4172/2167-1079.1000132

Bigby, J.A., Holmes, M.D. (2005). Disparities across the breast cancer continuum. Cancer Causes and Control, 16, 35-44. doi:10.1007/s10552-004-1263-1

Bindman, A. (2014). Health care reform and its impact on radiology practice. Journal of the American College of Radiology 11, 3, 252-254. doi: 10.1016/j.jacr.2013.10.005.

Cancer Services Program of Erie County. (2014). Cancer Services of WNY - Your partner for cancer screening, support and information. Retrieved February 18, 2015, from http://cspwny.org

Centers for Disease Control and Prevention (a). Moving forward in an era of reform: new directions for cancer screening. Retrieved from http://www.cdc.gov/cancer/nbccedp/pdf/newdirections_screening.pdf

Centers for Disease Control and Prevention (b). National Breast and Cervical Cancer Early Detection Program fact sheet. Retrieved from http://www.cdc.gov/cancer/nbccedp/pdf/NBCCEDP_FactSheet.pdf

Centers for Disease Control and Prevention. (2012). Health care reform and women’s insurance coverage for breast and cervical cancer screening.

Chautauqua County Department of Planning and Economic Development. (2012). Planning Chautauqua. Retrieved February 18, 2015, from http://www.planningchautauqua.com

Cornell University Program on Applied Demographics (2011). Projection Data Charts. Retrieved from http://pad.human.cornell.edu/counties/projections.cfm

199 | Page Susan G. Komen® Upstate New York November 2017 ECMC, Great Lakes Heathare System of WNY, & Affiliate of UB. (n.d.). The Road to Better Breast Care Runs Right to You. Retrieved February 18, 2015, from http://www.ecmc.edu/mammography/index.asp

Friedwald, S.M., Rafferty, E.A., Rose, S.L., Durand, M.A., Plecha, D.M., Greenberg, J.S., Conant, E.F. (2014). Breast cancer screening using tomosynthesis in combination with digital mammography. Journal of the American Medical Association. 311, 24, 2499-2507. doi: 10.1001/jama.2014.6095.

Gabitova, G., Burke, N.J. (2014). Improving healthcare empowerment through breast cancer patient navigation: a mixed methods evaluation in a safety-net setting. BMC Health Services Research, 14, 407. doi: 10.1186/1472-6963-14-407.

Genesee County. (2011). The Mission of Genesee County Government. Retrieved February 18, 2015, from http://www.co.genesee.ny.us

HP 2020. Healthy People 2020. US Department of Health and Human Services. December 2, 2010. Available online at http://www.healthypeople.gov/2020/about/ (accessed 8/2/2013).

Hunt, B.R., Whitman, S., Hurlbert, M.S. (2014). Increasing Black:White disparities in breast cancer mortality in the 50 largest cities in the United States. Cancer Epidemiology, 38, 2, 118- 123. http://dx.doi.org/10.1016/j.canep.2013.09.009

Jørgensen, K.J. (2012). Is the tide turning against breast cancer screening. Breast Cancer Research, 14, 4, 107. doi: 10.1186/bcr3212.

Jørgensen, K.J., Keen J.D., Gøtzsche P.C. (2011). Is mammographic screening justifiable considering its substantial overdiagnosis rate and minor effect on mortality? Radiology. 260, 3, 621-627.

Kaiser Family Foundation (2013). Distribution of the Nonelderly Uninsured by Race/Ethnicity. Retrieved from: http://kff.org/uninsured/state-indicator/distribution-by-raceethnicity-2/?state=NY

Kenney, G.M., Dubay, L. Zuckerman, S., Huntress, M. (2012). Opting out of the Medicaid expansion under the ACA: How many uninsured adults would not be eligible for Medicaid? Urban Institute. Retrieved from: http://www.urban.org/UploadedPDF/412607-Opting-Out-of-the- Medicaid-Expansion-Under-the-ACA.pdf

Medicaid Institute at United Hospital Fund. (2014). New York’s Medicaid in Transition: A New Primer for 2014.

Monroe County Health Department (2013). Community Health Assessment and Community Health Improvement Plan, Monroe County, NY, 2014-2017. Retrieved from https://www2.monroecounty.gov/files/health/DataReports/Monroe%20County%20cha%20chip% 202013.pdf

200 | Page Susan G. Komen® Upstate New York November 2017 Morrow, C.B., Schultz, R. (2013). The Onondaga County Community Health Assessment and Improvement Plan, 2014-2017. Retrieved from http://www.ongov.net/health/documents/OnondagaCountyCHA-CHIP.pdf

The National Association of County and City Health Officials| NACCHO. (n.d.). Local Public Health Information. Retrieved February 18, 2015, from http://www.naccho.org The National Association of Free & Charitable Clinics. (n.d.). Retrieved February 18, 2015, from http://www.nafcclinics.org

National Cancer Institute's Division of Cancer Control and Population Sciences. (n.d.). Cancer Control P.L.A.N.E.T. - Home. Retrieved February 19, 2015, from http://cancercontrolplanet.cancer.gov/

New York Commission on Healthcare Facilities in the 21st Century (2006). Uninsured in New York. Retrieved from: www.nyhealthcarecommission.org/docs/uninsured_in_new_york.pdf

New York State Cancer Consortium. (2007). Welcome to the New York State Cancer Consortium! Retrieved February 18, 2015, from http://www.nyscancerconsortium.org

New York State Cancer Consortium. (2012). 2012-2017 New York State Comprehensive Cancer Control Plan.

New York State Department of Health (2008). Priority Areas: Access to Quality Health Care. Retrieved from: www.health.ny.gov/prevention/prevention_agenda/access_to_health_care/index.htm

New York State Department of Health, Cancer Services Program. (2012). Breast and Cervical Cancer Early Detection Program Report, 2011-2012.

New York State Department of Health. (n.d.). NYS Cancer Registry and Cancer Statistics. Retrieved February 18, 2015, from http://www.health.ny.gov/statistics/cancer/registry/

New York State of Health. (2013). New York State of Health: The Official Health Plan Marketplace. Retrieved February 18, 2015, from https://nystateofhealth.ny.gov/

New York State of Health. (2014). New York State of Health, The Official Health Plan Marketplace, 2014 Open Enrollment Report.

Nardin, R., Zallman, L., McCormick D., Woolhandler S., Himmelstein D (2013). The Uninsured After Implementation Of The Affordable Care Act: A Demographic And Geographic Analysis. Health Affairs Blog. Retrieved from http://healthaffairs.org/blog/2013/06/06/the-uninsured-after- implementation-of-the-affordable-care-act-a-demographic-and-geographic-analysis/

New York State Comprehensive Cancer Control (2012). 2012-2017 New York State Comprehensive Cancer Control Plan. Retrieved from http://www.nyscancerconsortium.org/documents/NYSCompCancerPlan2012-2017-FINAL.pdf

201 | Page Susan G. Komen® Upstate New York November 2017 New York State Department of Health (a). A plan to transform the Empire State’s Medicaid program. Retrieved from http://www.health.ny.gov/health_care/medicaid/redesign/docs/mrtfinalreport.pdf

New York State Department of Health (b). Eligibility and enrollment changes under the ACA. Retrieved from www.health.ny.gov/health_care/medicaid/redesign/docs/2013- 14_executive_budget_proposal_aca_changes.ppt

New York State Department of Health (c). Medicaid in New York State. Retrieved from http://www.health.ny.gov/health_care/medicaid/#apply

New York State Department of Health (d) (2014). Medicaid Cancer Treatment Program (MCTP): Breast, Cervical, Colorectal and Prostate. Retrieved from http://www.health.ny.gov/diseases/cancer/treatment/mctp/

New York State of Health. Marketplace Basics: What is NY State of Health? Retrieved from http://info.nystateofhealth.ny.gov/resource/marketplace-basics-what-ny-state-health

New York State Department of Health (e) (2012). New York State Minority Surveillance Report, 2012. Retrieved from http://www.health.ny.gov/statistics/community/minority/docs/surveillance_report_2012.pdf

Niagara County New York. (2015). Home. Retrieved February 18, 2015, from http://www.niagaracounty.com

Orleans County Government. (2014). Home| Welcome from the Legislature. Retrieved February 18, 2015, from http://www.orleansny.com

Robinson-White, S., Conroy, B., Slavish, K., Rosenzweig, M. (2010). Patient Navigation in Breast Cancer: A Systematic Review. Cancer Nursing, 33, 2, 127-140. doi: 10.1097/NCC.0b013e3181c40401.

SEER Summary Stage. Young, J.L. Jr., Roffers, S.D., Ries, L.A.G., Fritz, A.G., Hurlbut, A.A. (eds). SEER Summary Staging Manual - 2000: Codes and Coding Instructions, National Cancer Institute, NIH Pub. No. 01-4969, Bethesda, MD, 2001. Available online at http://seer.cancer.gov/tools/ssm/ (accessed 8/2/2013).

Seneca County Health Department (2013). Community Health Assessment, 2014-2017. Retrieved from http://www.co.seneca.ny.us/wp-content/uploads/2014/01/SC_CHA2013.pdf

Shavers, V.L., Brown, M.L. (2002). Racial and ethnic disparities in receipt of cancer treatment. Journal of the National Cancer Institute, 94, 5, 334-357.

Susan G. Komen (2011). Susan G. Komen Central New York Community Profile Report 2011. Dallas, TX.

202 | Page Susan G. Komen® Upstate New York November 2017 Susan G. Komen for the Cure: 2015 Community Profile Resources. NBCCEDP Treatment Options by State.

Tashakkori, A., & Teddlie, C. (1998). Mixed methodology: Combining qualitative and quantitative approaches. Thousand Oaks, CA: Sage Publications. (Applied Social Research Methods Series, Volume 46)

The Urban Institute (2012). The Coverage and Cost Effects of Implementation of the Affordable Care Act in New York State. Retrieved from http://info.nystateofhealth.ny.gov/sites/default/files/2012-03_urban_institute_report.pdf

The White House, President Barack Obama. Expanding Medicaid. Retrieved from http://www.whitehouse.gov/expanding-medicaid

United States Agency for International Development. (2011). Performance monitoring & evaluation tips: Conducting key informant interviews, 2, 1-6. Retrieved from http://pdf.usaid.gov/pdf_docs/pnadw102.pdf

United States Census Bureau. Geography, Maps and Data. Retrieved from http://www.census.gov/geo/maps-data/maps/reference.html

United States Census Bureau. 2010 Population Finder. Retrieved from http://www.census.gov/popfinder/

U.S. Centers for Medicare and Medicaid Services. (n.d.). Data.Medicare.gov. Retrieved February 18, 2015, from https://data.medicare.gov

U.S. Centers for Medicare and Medicaid Services. (n.d.). Get 2015 health coverage now. Health Insurance Marketplace. Retrieved February 18, 2015, from http://www.healthcare.gov

U.S. Department of Commerce. (n.d.). United States Census Bureau. Retrieved February 18, 2015, from http://www.census.gov

U.S. Department of Health and Human Services. (n.d.). Find a Health Center. Retrieved February 18, 2015, from http://findahealthcenter.hrsa.gov

U.S. Department of Health and Human Services. (n.d.). Home | HHS.gov/healthcare. Retrieved February 18, 2015, from http://www.hhs.gov/healthcare/

U.S. Department of Health and Human Services, National Institute of Health, National Cancer Institute, & USA.gov. (n.d.). Comprehensive Cancer Information. Retrieved February 18, 2015, from http://www.cancer.gov

U.S. Food and Drug Administration, & U. S. Department of Health and Human Services. (n.d.). Mammography Facilities. Retrieved February 18, 2015, from http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfMQSA/mqsa.cfm

203 | Page Susan G. Komen® Upstate New York November 2017 Welch, H.G., Passow, H.J. (2014). Quantifying the benefits and harms of screening mammography. JAMA Internal Medicine, 174, 3, 448-54. doi: 10.1001/jamainternmed.2013.13635.

Western Steuben Rural Health Network, Inc. (n.d.). Cancer Services of Allegany and Cattaraugus County - Wellsville - - Allegany County, New York. Retrieved February 18, 2015, from http://allegany.ny.networkofcare.org/ph/services/agency.aspx?pid=CancerServicesofAlleganyan dCattaraugusCounty_1058_11_0

Wyoming County. (2009). Livingston-Wyoming Cancer Services Partnership. Retrieved February 18, 2015, from http://www.wyomingco.net/health/cancerservices.html

204 | Page Susan G. Komen® Upstate New York November 2017