2011

COMMUNITY PROFILE OF BREAST CANCER IN CONNECTICUT
EXECUTIVE SUMMARY

TABLE OF CONTENTS ………………………………………………………………………………………………………

TABLE OF CONTENTS ........................................................................................................... 1  Disclaimer: ................................................................................................................................... 2  ACKNOWLEDGEMENTS ........................................................................................................ 3  INTRODUCTION ........................................................................................................................ 4  Affiliate History .......................................................................................................................... 4  Organizational Structure ......................................................................................................... 5  Description of Service Area .................................................................................................... 5  Purpose of Report .................................................................................................................... 6  BREAST CANCER IN AFFILIATE SERVICE AREA ........................................................ 7  Methodology.............................................................................................................................. 7  Overview of Breast Cancer in Connecticut .......................................................................... 7  Demographic Overview of Connecticut ................................................................................ 8  Communities of Interest and Conclusions............................................................................ 9  HEALTH SYSTEMS ANALYSIS OF TARGET COMMUNITIES .................................. 15  Overview of Continuum of Care and Methodology ........................................................... 15  Overview of Community Assets ........................................................................................... 16  Legislative Issues in Target Communities.......................................................................... 17  Public Policy Perspectives .................................................................................................... 17  Health Systems Analysis, Findings & Conclusions .......................................................... 21  BREAST CANCER PERSPECTIVES IN THE TARGET ................................................. 23  Methodology............................................................................................................................ 23  Quantitative Data Sources .................................................................................................... 23  Community Provider Survey ................................................................................................. 23  Quantitative Data Overview .................................................................................................. 25  Survey Findings ...................................................................................................................... 26  Access to Breast Cancer Care and Services ................................................................ 26  Barriers to Access .............................................................................................................. 26  Identifying the Underserved In Connecticut ................................................................... 27  Improving Programs and Services .................................................................................. 28  Qualitative Data: Ensuring Community Input in Research ............................................. 28  Qualitative Data Sources and Methodology .................................................................. 28  Qualitative Data Overview ................................................................................................ 29  Experiences with Late Stage Cancers ................................................................................ 35  Summary of Findings ............................................................................................................. 37  SELECTING AFFILIATE PRIORITIES ................................................................................ 39  KOMEN CONNECTICUT PRIORITIES ............................................................................... 40  AFFILIATE ACTION PLAN AND RECOMMENDATIONS ........................................... 41 

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Disclaimer:
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The information in this Community Profile Report is based on the work of The Connecticut Affiliate of Susan G. Komen for the Cure® in conjunction with key community partners. The findings of the report are based on a needs assessment public health model but are not necessarily scientific and are provided "as is" for general information only and without warranties of any kind. Susan G. Komen for the Cure and its Affiliates do not recommend, endorse or make any warranties or representations of any kind with regard to the accuracy, completeness, timeliness, quality, efficacy or noninfringement of any of the programs, projects, materials, products or other information included or the companies or organizations referred to in the report.

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ACKNOWLEDGEMENTS ……………………………………………………………………………………………………… Volunteers are the core foundation of any organization, its activities, community involvement and success. The individuals who volunteered to join the Komen Connecticut Community Profile Team demonstrated this core and we appreciate their commitment. Each volunteer brought a level of knowledge and expertise with breast cancer, breast center and data management, community hospitals and medical services available throughout the state. A special thank you to their employers, Saint Francis and Hartford Hospital’s, State of Connecticut, and Connecticut Surgical Group for allowing each to commit the hours required to tell this story. We would also like to express our appreciation to Marian Evans, M.D., CRA, Associate Professor, School of Health and Human Services for her contribution to this project. Komen Connecticut and the Community Profile team are indebted to all the women, social workers and physicians who shared their experiences and stories. The knowledge gained allowed us to understand the challenges faced by women and families impacted by breast cancer. The recommendations in this report are a result of their story; it is our hope they will have a positive impact on breast education, screening and treatment in Connecticut. Sonja L. Larkin-Thorne, Chair Community Profile Team Member, Komen Connecticut Board of Directors 2011-2012 Consumer Representative, National Association of Insurance Commissioners Community Profile Team: Lou Gonsalves PhD, Epidemiologist, Connecticut Tumor Registry Kristen Noelle Hatcher, JD, Director Grants & Mission Initiatives, Susan G. Komen for the Cure Connecticut Sally Lerman, MS, CHES, Health Promotion Coordinator, Saint Francis Hospital and Medical Center Ginelle McPherson, MS, Cancer Program Manager, Helen & Harry Gray Cancer Center, Hartford Hospital Anne Morris, Executive Director, Susan G. Komen for the Cure Connecticut Roxanne Rotondaro, MPH, Coordinator/Practice Mgr., Connecticut Surgical Group, LLC

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INTRODUCTION ……………………………………………………………………………………………………… Affiliate History Nancy G. Brinker promised her dying sister, Susan G. Komen, that she would do everything in her power to end breast cancer forever. In 1982 that promise became Susan G. Komen for the Cure®. Today, Komen for the Cure is the world’s largest network of breast cancer survivors and advocates. In 1994, the first Komen Connecticut Race for the Cure® was held in New Britain, Connecticut. Six years later, on October 4, 1999 the Connecticut Affiliate of Susan G. Komen for the Cure® (Komen Connecticut) was established. Komen Connecticut works throughout the State of Connecticut to fulfill the promise — to save lives and end breast cancer forever by empowering people, ensuring quality care for all and energizing science to find the cures. This mission is based on the promise made by Nancy to her sister when little was known about the disease. Komen Connecticut’s work focuses on educating the community on breast health and breast cancer, working to ensure that screening and treatment are available to all residents of Connecticut and raising funds to support breast cancer research. Since its inception, Komen for the Cure has invested over $21 million in Connecticut in these four areas of focus – education, screening, treatment and research.

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Organizational Structure Komen Connecticut is based in Farmington, Connecticut. The organizational components of Komen Connecticut are the Board of Directors, the Executive Committee, various standing Board committees and the staff. An 11 member Board of Directors chaired by Ann Hogan, currently works with a 5 person staff, 3 full time and 2 part time, to fulfill the Komen promise locally: to save lives and end breast cancer forever. Figure 1 depicts Komen Connecticut’s organizational structure.
Figure 1. Komen Connecticut organizational chart.

Description of Service Area The Connecticut Affiliate serves the entire State of Connecticut from Greenwich in the southwest, Salisbury in the northwest, Thompson in the northeast and Stonington in the southeast. Connecticut is bordered by New York to the West, Massachusetts to the North, Rhode Island to the East and the Long Island Sound to the South. Figure 2 depicts Affiliate funding for the past eight years throughout the state.

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Figure 2. Affiliate grantees, 2004-present.

Purpose of Report To meet our promise to save lives and end breast cancer forever, Komen Connecticut relies on information obtained through the Community Profile process to establish priorities and guide our work in Connecticut. The purpose of the Community Profile is to further illuminate areas of need for breast health promotion and breast cancer education, screening, treatment and support within the State of Connecticut. The Connecticut Affiliate has granted over $10 million to community based breast health organizations since its inception in 1999. This report intends to describe the varied breast health needs in the state as well as potential areas in which Komen Connecticut’s programs and funding might help advance the network’s promise of ending breast cancer. Potential opportunities and areas of interest have been drawn from analyses of breast cancer statistics, policies and programs in the state that may impact breast health and exploratory, primary data collection among providers and breast cancer survivors in the state. After synthesizing data from various sources, this report presents data-driven priority areas from which the Affiliate intends to develop funding decisions for the years 2012-2014. This report provides abridged analyses of the data collected and reviewed by the Affiliate—additional information on the data can be obtained by contacting the Affiliate office at 860-321-7806.

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BREAST CANCER IN AFFILIATE SERVICE AREA
……………………………………………………………………………………………………… Methodology Breast cancer occurs in women at a significantly higher rate than men. Therefore, the Affiliate has chosen to focus its mission to reduce breast cancer mortality in women where the impact will be greatest. Statistics reviewed for this Community Profile include data derived specifically for Komen Connecticut by the State of Connecticut Department of Public Health. Additional data were obtained from the Centers for Disease Control and Prevention and the U.S. Census Bureau. Statistics were reviewed for their relevance to the current breast health situation in Connecticut as well as their applicability for targeting geographic areas smaller than the state. Overview of Breast Cancer in Connecticut The State of Connecticut has the second highest incidence of female breast cancer in the nation1 with 2,920 new breast cancer cases diagnosed in 2008 2. Connecticut ranks 35th in the nation with respect to breast cancer mortality3, 490 women died from breast cancer in 20084. Table 1 summarizes key breast cancer statistics for women in Connecticut by race and Hispanic ethnicity.
Table 1, Breast Cancer in Connecticut Women
Breast Cancer Estimate Age-adjusted incidence rate per 100,000 women (95% confidence limits) All races/ ethnicities White Black Hispanic Age-adjusted mortality rate per 100,000 women (95% confidence limits) All races/ ethnicities White Black Hispanic Percentage stage IV diagnoses All races/ ethnicities White Black Hispanic Race/ Ethnicity Connecticut a 2006-2008 136.1 (133.2-139.1) 138.1 (135.0-141.2) 112.9 (103.6-122.8) 120.9 (109.7-132.9) 2005-2007 23.0 (22.0-24.3) 23.0 (21.8-24.3) 28.1 (23.4-33.4) 11.5 (8.1-15.8) 2006-2008 4.5% 4.4% 6.4% United States b 2007 120.4 (119.8-120.9) 121.0 (120.4-121.5) 117.0 (115.4-118.5) 88.2 (86.6-89.7) 2007 22.8 (22.6-23.1) 22.2 (22.0-22.5) 31.4 (30.6-32.3) 14.6 (14.0-15.3) -

Notes:  Hispanic origin is not mutually exclusive from race categories (white, black).  Statistics for other races (Asians, Pacific Islanders, American Indians/Alaska Natives) are not presented due to small numbers leading to unreliable rate estimates. Data Sources: a Connecticut Tumor Registry; b United States Cancer Statistics 2007

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The incidence of breast cancer has varied over the past 40 years, with rates increasing steadily, and then leveling off over the past few years. Breast cancer mortality has seen a consistent decline thought to be due to early detection (mammographic screening) and improved treatment and survival. The survival rate is a measure of how long people live after diagnosis with cancer. The relative survival rate is defined as the ratio of a cancer patient's chance of surviving a given time interval to that of a person of the same age and sex in the general US population (i.e., the rate has been adjusted for mortality in the general population). The 5-year relative survival for Connecticut women diagnosed with breast cancer is over 90%; however, the survival rates varies greatly with the stage of the cancer at diagnosis (Table 2).
Table 2 , Five Year Relative Survival Rate for Connecticut Women Diagnosed 1999-2003 and Followed Through 2008 5 year relative 95% lower 95% upper Stage at diagnosis survival % confidence limit confidence limit Localized 99.5 97.4 99.9 Regional 87.2 85.7 88.6 Distant 25.4 21.8 29.1 All stages 90.9 90.0 91.6
5

While two-year mammography rates suggest that Connecticut may be reaching many for early screening and detection, concerns remain about reducing mortality and illness severity among several populations. Data from the Behavioral Risk Factor Surveillance System indicate that 84.1% of Connecticut women aged 40+ years have had a mammogram in the last 2 years compared with national averages of 76% for women 40+ years; however, racial and ethnic disparities for mammography persist (Table 3).6
Table 37, Connecticut and U.S. Mammography Rates Connecticut Percent of women 40 years and older 84.1% who have had mammogram in the last two years (BRFSS, 2008) White 84.7% Black 81.7% Hispanic 79.8% U.S. 76.0%

75.9% 79.3% 73.5%

The Community Health Data Scan for Connecticut, commissioned by the Connecticut Health Foundation, demonstrates that African American women in the urban centers and Hispanic women in manufacturing centers are among the least likely in the state to use mammography screening.8 Demographic Overview of Connecticut Connecticut is the second smallest state and within it has extremes of wealth and poverty; it has the largest disparity between poverty and wealth of all fifty states, second

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only to New York.9 There are approximately 3.5 million people residing in Connecticut based on the 2010 census10. Table 4, presents a demographic profile of the state.
Table 4, Demographic Profile of Connecticut11 Demographic Description Total Population Median Household Income Individuals living below the poverty line Ethnic Breakdown of State Population Measure 3,574,097 $67,721 8.7% White 77.6% Hispanic 13.9% Black 10.1% Asian/PI 3.8% Native American 0.3% Two+ races 2.6% 8.2%

Percent of population 65 years or older

When compared to the other states and territories, Connecticut is more highly educated, less ethnically diverse, more expensive to live in and less impoverished.12 In terms of insurance coverage, it is estimated based on the 2007 data that there are 142, 975 uninsured women in the state.13 The populations with the highest uninsured rates are in the urban centers.14 Because Connecticut is a small geographic region with large achievement gaps in education, health, and income, geographic mapping is essential to the Affiliate’s mission. Communities of Interest and Conclusions The communities of interest were selected as follows, focusing on areas with high rates of breast cancer mortality and high proportions of late stage cancers where interventions will likely have most impact. Connecticut towns were ranked by ageadjusted mortality rate (2004-2008) and those towns with rates higher than the state rate, and where there were 4 or more deaths per year were selected. (Rates based on few cases or deaths per year have a high standard error and are considered unreliable). Similarly, the towns were ranked by the proportion of late stage (AJCC stage III and IV) breast cancers diagnosed (2004-2008) and those towns with a proportion higher than the proportion for the entire state, and where 20 or more late stage tumors were diagnosed, were selected. This method identified a total of 39 Connecticut towns (Table 5).
Table 5, Target Towns Bloomfield Branford Bridgeport Cheshire Danbury East Hartford East Haven Enfield Hamden Hartford Manchester Meriden Middletown Milford Naugatuck New Britain Norwalk Norwich Shelton South Windsor Stamford Stonington Stratford Torrington Waterbury West Hartford West Haven Westport Wethersfield Windsor

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Farmington Glastonbury Groton

New Haven New Milford North Haven

Trumbull Vernon Wallingford

The towns targeted vary widely with regards to socioeconomic factors. Connecticut’s capital city, Hartford, is one of our target towns. It has a poverty level of 31.6 percent which is more than double the national average of 13.5 percent15. However, also included in our target towns is Glastonbury, which has a poverty level of 1.9 percent16. There are several towns with populations that reported speaking a language other than English at home at levels higher than the national average, including, Hartford, Bridgeport, Stamford, Danbury, Norwalk17. The people in the target towns are graduating high school at levels above the national average in all but the following towns- listed in order from the lowest to highest percentage: Hartford, Bridgeport, New Britain, Waterbury, New Haven, Meriden, Danbury, and East Hartford.18 The African American and Hispanic communities in the state are concentrated in the state’s urban centers and this is reflected in the census data for our target communities, with the occasional pocket of diversity in towns such as Bloomfield19. While not used in the town selection process, the age-adjusted incidence rates in the target towns were also examined. The maps below show the age-adjusted mortality and incidence rates and the proportions of late stage diagnoses in the selected towns (Figures 3-5).

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Figure 3. Map of mortality.

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Figure 4. Map of incidence.

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Figure 5. Map of late stage.

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Figure 6 shows a composite map highlighting the towns with age adjusted mortality rates higher than the state rate and percentages of late stage diagnoses higher than the state average. Towns that have incidence rates that are higher than the state incidence rate are indicated with a star.
Figure 6. Selected areas of interest.

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HEALTH SYSTEMS ANALYSIS OF TARGET COMMUNITIES ……………………………………………………………………………………………………… Overview of Continuum of Care and Methodology In 2009, the Affiliate completed a comprehensive analysis of the programs and services throughout the state that would be an asset to women’s breast health, the Affiliate relied on three sources of data. First, the Affiliate compiled listings of all the breast cancer organizations and organizations providing breast cancer screening, early detection and/or treatment support service. Second, an Affiliate intern developed a random list of assets using publicly available sources like the internet and the phone directory. Third, the Affiliate cross-checked these lists and then identified additional assets based on lists independently compiled by MATRIX, a local public health consultant firm. The following clinical and non-clinical resources were mapped: 1. 2. 3. 4. 5. Hospitals Cancer Centers Community Health Centers (with comprehensive cancer care services) Breast health and cancer organizations Official Connecticut Breast and Cervical Cancer Early Detection Program (CBCCEDP) sites 6. Local Health Departments (with breast cancer prevention programs) 7. Support networks or support group organizations; and 8. The Connecticut Affiliate’s grantees (2004-present) Assets were identified based on the current availability of programs and services most relevant to breast health such as screening, diagnostic services, treatment, participation in clinical trials, community outreach programs and educational materials, complimentary therapy services, support groups and/or palliative care. Data from 2009 continue to be current and was used in our analysis for this Community Profile. Basic analysis of the asset map included considering the location of breast health assets in relation to disease burden and in relation to the state’s population. Areas with surpluses and deficits of assets were considered. A second level of analyses considered the location of assets and disease burden relative to the Affiliate’s recent funding (last five years). All of the identified assets were contacted and asked to participate in the provider survey and/or provider interviews that comprise the exploratory data process of the Community Profile. Findings from this Affiliate survey of clinical and non-clinical providers as well as interviews with community providers also contributed to the identification of additional assets and gaps in services for the target towns in the state.

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Promising practices that have gained interest in the state are patient navigation programs as well as creative outreach approaches that emphasize the tailoring of programs to better suit the needs of sub-populations. Patient navigation refers to guidance and support provided by trained personnel to persons with abnormal cancer screening results or a positive cancer diagnosis. Patient navigators help patients understand their condition and options, while traversing a multitude of paperwork, facilities, and procedures that begin with the abnormal screening result. These navigators become a patient’s point-persons for managing their illness within the health care systems that they will use for care. Four hospitals or health care systems currently offer patient navigation type programs in Bridgeport, Farmington, Hartford and New Haven. While national (NCI and NIH-sponsored) evaluations are ongoing, anecdotal evidence suggests that these programs help women better cope with their cancer diagnoses and better navigate the health care systems they encounter and therefore, improve their health screening and follow-up behaviors in the short term, and their health outcomes in the long term.20 Evaluation studies of patient navigation programs in various regions of the country have been promising, but not decisive. Further study of the impact of their programs is needed. Creative outreach or cultural tailoring strategies are often employed as a means of reaching “hard to reach” and/or minority populations. These unconventional strategies for improving health screening and health outcomes primarily consist of bringing acceptable health promotion messages and interventions to people where they already live, work, and spend time e.g. hair and nail salons, barbershops, houses of worship, schools and community centers. These programs may also modify features of the intervention so that they are more acceptable to the population of interest e.g. using different presentation formats. Some community health worker programs may be described as tailored outreach strategies. Overview of Community Assets The breast health assets are concentrated in and around population centers of the state. The New Haven and Hartford areas boast particularly rich sets of assets as these areas host universities with medical schools as well as multiple cancer centers. New Haven has the state’s only NCI-designated Comprehensive Cancer Center at Yale University; and Hartford Hospital has the state’s only NCI-designated Community Cancer Center. While every county has some breast health assets, the concentration and distribution varies across the state. For example, in Hartford County services are concentrated in the urban center, which suggests long travel distances to access services as well as potential transportation issues and timing challenges for the elderly, some disabled populations and lower income, working women who have difficulty seeking services due to work and home responsibilities. Similar issues might arise for women in Fairfield County. Rural areas have transportation issues related to the distance between population and services. By contrast, although Bridgeport has a nearby cancer center and is the largest city in the state, the surrounding towns, like Fairfield, appear to have better access to breast health resources. While the number of

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assets, their placement and the services they provide are critical, both population (e.g., income, insurance status, and car ownership) and infrastructure (e.g., accessibility and variety of public transportation, formalized partnerships between local institutions and major assets such as cancer centers) characteristics should be considered in order to best understand access issues. The primary foci of the Komen Connecticut’s grants program are: 1) to increase awareness and educate women about breast cancer, 2) to ensure screening and treatment is available to all residents of Connecticut, and 3) to reduce breast cancer mortality rates in Connecticut by funding community-based programs. As depicted in Figure 2 earlier in the document, the Affiliate’s grantees reach most geographic regions of the state The Affiliate responded to the needs compiled in the 2009 report. The current slate of grantees provides targeted services to the Affiliate’s core populations to address breast cancer needs in the state: the uninsured, the underinsured, ethnic minorities, and low income women. Outreach, education and screening services were the most commonly funded programs. The two mobile mammography programs funded as well as the numerous patient navigation programs, diagnostic follow up and treatment support services all aim to increase the availability of services and better coordinate treatment for medically underserved women. The Affiliate’s past and present support of health interpreters for Spanish-speaking populations also aims to improve access by minimizing cultural and linguistic barriers for low-income women. Increasing diversity within the state may require consideration of other languages/cultures. Information on size and placement of diverse sub-populations within the state as well as data regarding breast cancer risk for diverse immigrant populations may help prioritize cultural/language capacity efforts. Legislative Issues in Target Communities Komen Connecticut is a member of the Connecticut Cancer Partnership (CCP). CCP is funded by the Center for Disease Control and is responsible for coordinating a statewide comprehensive approach to cancer prevention and control through the development, implementation, and evaluation of a comprehensive cancer control plan for Connecticut. Anne Morris, Executive Director of Komen Connecticut, is a member of the Data, Surveillance and Evaluation Committee and the Early Detection Committee. Public Policy Perspectives Public policies and programs most relevant to providing access to breast cancer education, screening and treatment include federal and state breast and cervical cancer early detection programs, public and private health insurance rates and grants such as those made by Komen Connecticut. An overview of some of the public policy issues affecting breast health follow. 1. The Breast and Cervical Cancer Early Detection Program: The Centers for Disease Control and Prevention established the National Breast and Cervical Cancer Early Detection Program (NBCCEDP) in 1995 by distributing funds through state cooperative

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agreements in order to cover screening and diagnostic services for medically underserved, low-income (at or below 200% of federal poverty level) women. Connecticut receives approximately $1.3 million per year for this program from CDC with additional funds provided by the Governor’s budget as follows: Table 6: CBCCEDP Funding State Fiscal State National (CDC) Year Budget Funds 2010-2011 $2,400,000 $1,300,000 2009-2010 $2,400,000 $1,200,000 2008-2009 $2,400,000 $1,300,000

Total CBCCEDP Funds $3,700,000 $3,600,000 $3,700,000

It should be noted that there is a 10% cut the program in the Governor’s Budget for FY 2011-12 and 2012-13. The budget implementer states that the Federal Health Care Program will provide these services. The Connecticut Breast and Cervical Cancer Early Detection Program (CBCCEDP) is housed within the state Department of Public Health. There are 15 CBCCEDP sites throughout the state that provide office visits, screening and diagnostic mammograms, breast biopsies, breast ultrasounds, fine needle aspirations, clinical breast exams and surgical consultations. To qualify, women must be at or below 200% of the federal poverty level and have either no health insurance, health insurance that excludes mammography or have a high insurance deductible ($1,000 or more). Figure 7 depicts the location of designated providers for Connecticut’s BCCEDP.

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Figure 7: CBCCEDP Providers

Nationally, only 15% of eligible women present for care under the NBCCEDP.21 Connecticut calculations, based on Census and CDC estimates of the eligible population, suggest that 10-48% of the state’s eligible women are participating in the CBCCEDP on an annual basis. The magnitude of this range is determined in large part by the variability in estimates for uninsured women, 40-64 years old in the state which range from 19,311 to 91,615. However, on average, CBCCEDP screened 9200 women between 2004 and 2010, detecting 31 invasive breast cancers, approximately 1% of breast cancers recorded in the state on a given year.
Table 7: Breast Cancer Screening Results
Breast Cancer Screening Results and Outcomes Five-Year Summary, 7/2004 to 6/2009 Connecticut Mammograms provided Abnormal mammograms* Percentage of abnormal mammograms Age-adjusted percentage** 17,749 2,376 13.4 13.7

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Breast cancers detected*** Rate of breast cancers detected per 1,000 mammograms Age-adjusted rate per 1,000 mammograms**

137 7.7 8.2

* Abnormals include mammogram results of: suspicious abnormality, highly suggestive of malignancy, and assessment incomplete (further imaging studies or film comparisons required). ** Adjusted to the age distribution of NBCCEDP participants 40 years of age and older having mammograms performed in calendar year 2000. *** Breast cancers include invasive breast cancer, ductal carcinoma in situ (DCIS), and other in situ excluding lobular carcinoma in situ (LCIS). Table includes only NBCCEDP-funded mammograms provided to women age 40 and older. An additional 26 women, not included above, were diagnosed with CIS (other), DCIS, or invasive breast cancer through the NBCCEDP following a mammogram funded through another source.

In 2001, Connecticut passed legislation which expanded the CBCCEDP to include breast and cervical cancer treatment. Treatment of precancerous conditions and/or cancer is covered by allowing eligible women to qualify for emergency Medicaid if they are screened by a program site and have no means of payment for treatment services. However, Connecticut is currently an Option 1 state, which is the most restrictive category in terms of how states regard women’s eligibility for emergency Medicaidcovered breast cancer treatment. States that are Option 1 consider women eligible for Medicaid treatment only if their clinical services were provided all or in part by the state’s NBCCEDP-funded program. What this means is that women who are diagnosed with breast cancer are considered eligible for Medicaid Treatment only if they were screened at one of the CBCCEDP sites. If they were screened and diagnosed elsewhere (e.g. by a free mammogram provided by a Komen funded grant), they are not eligible for Medicaid Treatment. Currently, it is estimated that 300 women per year are not eligible simply because of where they were screened. As a partner with providers of both CBCCEDP and non-CBCCEDP screening services throughout the state, Komen Connecticut has actively worked with the legislature to have legislation introduced such that Connecticut becomes an Option 3 state. This will continue to be a top policy priority for the Affiliate. Option 3 states are the least restrictive and allow eligible women to qualify for Medicaid-funded breast cancer treatment if they are screened by any provider. 3. In 2009, Komen Connecticut partnered with Are You Dense, Inc. to have legislation introduced that would require Health Care Providers to inform women if their mammograms showed that their breast tissue density was greater than 50%. Many women have relied solely on mammography for their breast screenings and in women with breast tissue density greater than 50%, there is a 40% chance that a breast cancer will not be detected. The legislation passed and Connecticut is now the only state with this requirement. Women with dense breast tissue are also eligible for an ultrasound which can detect tumors in or around dense breast tissue that mammograms miss.

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4. There are an estimated 125,248 uninsured women in the state according to the Centers for Disease Control and Prevention. For those with private health insurance, average annual premiums in the state are significantly higher than the national average. Individuals and households in Connecticut pay a larger percentage of their incomes for health insurance. In terms of breast health benefits, state law requires insurers to provide breast cancer screening as well as cover reconstructive surgery if mastectomy is covered.22 State law also mandates a 48 hour inpatient recovery period after mastectomy. Other state laws related to breast health or breast cancer include:   An act that provides coverage for participation in cancer clinical trials including treatment at an out-of-network facility if it is unavailable at an in-network facility and the clinical trial sponsors are not paying for it; A mandate that insurers cover baseline mammograms for women 35 to 39 and one every year for women 40 and older. Additional coverage must be provided for a comprehensive ultrasound screening of a woman's entire breast(s) if a mammogram shows heterogeneous or dense breast tissue based on BI-RADS or she is at increased breast cancer risk because of family history, her prior history, genetic testing, or other indications determined by her physician or advanced-practice nurse. Coverage is subject to any policy provisions applicable to other covered services; and A mandate that insurers cover cancer treatments including outpatient chemotherapy, reconstructive surgery, non-dental prosthesis, surgical removal of breasts due to tumors, and a wig if prescribed by a licensed oncologist for a patient suffering hair loss due to chemotherapy.

Health Systems Analysis, Findings & Conclusions As anticipated, most breast cancer related services are based at hospitals, clinics, cancer centers or clinical service providers. Community-based organizations have an interest in screening promotion education; however, they often lack the capacity to make a significant difference. Improved partnerships with entities like faith-based institutions and small businesses might help to improve breast cancer awareness among residents who do not have regular care providers or who do not often utilize health facilities. Evidence-based outreach programs have become more prevalent in recent years. Komen Connecticut and its grantees believe that these programs are helping to improve breast health for all Connecticut women. For its size and population, Connecticut possesses a wide variety of breast health resources. In addition to a nationally designated comprehensive cancer center and a nationally designated community cancer center, there are several hospital-based cancer centers, screening services in health facilities where women are likely to present for other services such as community health centers, and population-specific, locallyinitiated support groups. Programs and services are concentrated in two of the state’s

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largest cities and in some of the well-resourced suburban towns. Many agencies appear to provide breast health education/awareness, screening services and treatment support services i.e. counseling. Diagnostic follow up, non-medical treatment support i.e. financial, transportation, etc. and financial assistance for treatment seem limited despite the presence of federal and state funds to provide treatment for those diagnosed through the CBCCEDP. Komen Connecticut believes that early diagnosis and quality treatment are likely to have beneficial impact on breast cancer mortality in the state. Programs and services appear to be sufficient for the urban core areas of Hartford and New Haven and sparser in Bridgeport. Further in the urban centers and peripheral areas, many providers continue to report difficulty reaching certain populations, specifically: working poor/low-income women of all races/ethnicities, Hispanic/Latina women, African American women, the elderly, those with a diverse array of disabilities and those with language barriers. The Community Profile team decided to use the community data collection process to gather more information about: 1) provider/health care system practices for screening, referral and diagnostic follow-up, 2) language barriers in outreach and the provision of services, 3) whether or not high-need zip codes were being served by providers, 4) barriers and opportunities for improving awareness and screening for women throughout the state as well as what women and providers might need in order to contribute to the national movement to end breast cancer. Selected findings from the exploratory data follow.

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BREAST CANCER PERSPECTIVES IN THE TARGET ……………………………………………………………………………………………………… Methodology In addition to analyzing available state data, the Komen Connecticut collected exploratory community data from several sources in order to ensure that these data were reflective of recent and current experiences among those diagnosed with breast cancer and the state’s diversity of breast health providers. This section of the report details the exploratory data process conducted by Komen Connecticut. The Community Profile Team tasked with collecting exploratory data decided to supplement existing data with data from two additional data sources: a community provider survey and interviews with service providers and women diagnosed with late stage (Stage 3 and Stage 4) breast cancers. Below one will find summaries of both the quantitative findings from the survey and the qualitative data collected in interviews. Table 9 summarizes the data collection sources and methodology.
Table 9: Exploratory Data Sources
Informants Clinical and non-clinical providers of breast health services and care Social Workers, Case Managers and other nonphysician providers of breast health services and care Women diagnosed with late stage (Stage III or Stage IV) breast cancers Case studies or examples provided by clinical providers Data Sources 35-item, self-administered, electronic survey Structured interviews (15 items) Structured interviews (18 items) Oral & written case narratives # included in analyses 29 Timeframe 2/14/20114/8/2011 3/14/20114/20/2011 3/14/20114/20/2011 3/1/2011-4/8/2011

12

4 9

All exploratory data were analyzed to uncover common themes. Such themes may highlight potential program opportunities as well as describe potential barriers and roadblocks to reducing cancer mortality in Connecticut. These data also provide insights about elements of service delivery that could use additional refinement in order to reach and benefit more women. Quantitative Data Sources Community Provider Survey Intended primarily for electronic administration via Survey Monkey, the community provider survey instrument included questions to assess: demographic and descriptive provider information; breast cancer education, screening, treatment and referral practices; providers’ barriers to screening; perceptions of women’s barriers to screening

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and treatment; perceptions of underserved populations and programs and tactics worthy of recognition and/or replication. Letters explaining the purpose of the survey and providing the survey link were emailed to Komen Connecticut’s network of partners, friends, and entities known to engage in breast cancer programs i.e. the state-funded breast and cervical cancer early detection providers, cancer support groups, etc. Information about the survey and a message encouraging participation was sent to 150 individuals. A link to the survey was also made available on Komen Connecticut’s website. Twenty-nine providers, representing a range of positions and practices, participated in the survey. Table 10 describes the characteristics of the providers and agencies represented by survey respondents.

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Table 10: Survey Respondents, Provider & Agency Profile Provider and Agency Profile Provider Type (n=28) Non-clinical program or education staff Nurse Practitioner/Physician Assistant Social Worker Researcher/Academic Physician Provision of breast services (n=28) Clinical breast exams Digital mammography screening Biopsy Follow up screening Ultrasound MRI Analog mammography screening No screening or diagnostic services Breast cancer treatment(s) Breast related health education (n=28) Delivers/Distributes breast cancer education, information and materials Provides information and materials in Spanish Provides information and materials in languages other than English & Spanish (n=24) Polish, Portuguese & Vietnamese named as most common other languages Primary Sources of continuing education (n=28) Cancer advocacy and support organizations like Susan G. Komen for the Cure Professional associations Continuing education sessions Health and medical journals or articles Internet/Websites Access for uninsured and underinsured (n=27) Agency does not screen uninsured Agency does not accept public insurance for screening Agency does not treat uninsured Clinical trials access (n=27) Unaware of breast cancer clinical trials in area 44.4% 18.1% 9.1% 13.3% 71.4% 64.3% 46.4% 46.4% 46.4% 96.4% 85.7% 29.2% 64.3% 53.6% 53.6% 53.6% 50.0% 42.9% 25.0% 21.4% 48.1% 75.0% 10.7% 7.1% 7.1% 3.6%

Quantitative Data Overview Survey findings highlight aspects of the following themes: access to breast cancer care and services, barriers to access, identifying the underserved in Connecticut and improving programs and services. Where relevant, interview data have been used to

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provide qualitative detail for some of the survey findings; likewise, fill-in the blank responses from the survey have been compared and contrasted to interview data. As the survey dataset contains numerous variables, data not presented in this report may supplement Komen Connecticut’s understanding of breast cancer statewide and help shape an appropriate action plan. The data presented here are not necessarily representative of the status of breast cancer in the state due to both small sample sizes and a reliance on convenience sampling. Survey Findings

Access to Breast Cancer Care and Services
Survey data affirm the widespread presence of screening and early detection programs throughout the state. The majority of program staff working on breast cancer, whether social workers or case managers, reported working in settings where screening and/or treatment services are being provided. Eighty percent of physician and nurse respondents worked in organizations or agencies that provided screening and diagnostic services with clinical breast exams, digital mammography and biopsy being most commonly available services. While access to care and services can be defined in many ways, one key component of access to breast cancer care and services is participation in a private or public health insurance plan. The majority of organizations represented by survey respondents screen (81.9%) or treat (86.7%) uninsured women; and less than 10% of respondents reported that their organization did not accept public insurance. This finding is similar to 2009 findings about access to breast care and services. However, higher proportions of women who sought breast services were described by providers as not having the financial resources to pay for care up to 42.7% from 23% in the 2009 community provider survey. This perceived increase may be reflective of the providers comprising this year’s respondents, a group of providers more likely to discuss finances and challenges accessing services with patients/consumers. Changes in population level access to health insurance due to changes in the economic environment may also help account for this difference. Finally, designed to facilitate access to care among uninsured/underinsured women living at 200% of poverty, the state’s CBCCEDP was thought to be underutilized by many providers. Providers believed information about this program was poorly disseminated or poorly understood by women and generalist providers throughout the state.

Barriers to Access
Beyond insurance, providers were asked about other barriers to optimal breast health services in the state with an emphasis on breast cancer screening and treatment. The majority of providers believed that social and cultural barriers (54.2%) were among the most important barriers preventing patient-provider discussions about breast cancer

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screening. The social and cultural barriers described by providers included familial responsibilities, an inability to take off work (loss of wages), fear of knowing one’s cancer status, lack of familiarity with screening and preventative care, and personal issues not related to breast health. In contrast, more than forty percent (41.7%) of providers identified “no barriers” to their discussing breast cancer screening with their patients. Very few providers described organizational, provider-related and/or educational barriers to breast cancer screening. Although only 16.7% of survey respondents selected “language or communication barriers” as barriers to care in the state, the majority of providers surveyed described addressing language barriers as an ongoing challenge in their organization. In terms of efforts to address language and communication barriers, more than eighty-five percent of providers’ organizations provide information in Spanish in addition to English. Moreover, more than one quarter (29.2%) provide information in languages other than English and Spanish, with Polish, Portuguese and Vietnamese being described as most used by survey respondents. The need for culturally appropriate written materials and in-person interpretation for Spanish, Creole and Portuguese and emerging Asian languages was expressed during the provider interviews. Finally, although no questions were asked about genetic testing in the survey, many providers mentioned referral to genetic testing on the basis of screening results and/or medical histories. Screening also emerged as a factor to help improve diagnoses and optimize treatment during the provider interviews. While the potential benefits of genetic counseling and testing appear to be understood by a variety of providers, the provider interviews revealed the administrative and legal complications that limit access to genetic counseling and testing for breast cancer. While one can rationalize why women lacking health insurance as well as those participating in public insurance plans may lack access to genetic testing and counseling, it is probably less understood that women with “good insurance” may also lack access to such state of the art services. This finding may be important in terms of recent scientific evidence about interactions between triple negative breast cancers and genetic mutations in the provision of breast cancer treatment. Triple negative breast cancers, more common among African American women in the U.S., have, historically not responded to treatment as well as other breast cancers leading to higher rates of death and disabling illness. New evidence suggest that triple negative cancers in women with BRCA mutations respond to specific treatments better than other triple negative cancers.23 While more research is needed, many African American women in the state are not screened for BRCA mutations.

Identifying the Underserved In Connecticut
Underserved populations were defined in several ways by providers participating in the survey. Komen Connecticut specifically asked providers to name population subgroups and geographic areas of their regions that they believed were underserved. Undocumented immigrants and the uninsured were described as those least able to access breast cancer services and care in the state. Rural residents, documented

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immigrants, minorities and the underinsured were also identified as potentially underserved. Despite the presence of the CBCCEDP, the uninsured remain underserved from the perspective of many providers. While not significant in terms of numbers or percentages, it is of interest that one provider described the organization’s data collection methods as a barrier to being able to assess potential financial and other needs among their patients. In this case, patients’ needs are often ascertained by the educated guesses of providers. Improving Programs and Services Nearly half (45%) of providers responding to questions thought that additional outreach and educational activities would help improve the delivery of breast health services in their service area. Moreover, twenty-five percent thought that the co-location of services (e.g. gynecologist and mammography) or location of screening services in community settings (mobile units, schools, libraries, etc.) would help improve the delivery of breast health services. Twenty percent proposed making following up screening and services more accessible in order to improve breast health service delivery. These responses are similar to previous interview findings; however providers interviewed really focused on improving quality and content over quantity. These providers wanted to build on existing efforts and have more time to work with patients or more effective ways to engender trust among patients rather than increase the number of outreach activities conducted. When asked about the one thing that could be done in the state to improve women’s experiences with breast cancer diagnosis and treatment, thirty percent of providers recommended patient navigation, nurse navigation or similar services that could facilitate patient comprehension, decision-making, support and compliance. Other potential investments to improve breast cancer experiences included: improved emotional and psycho-social support, reducing disparities in the use of support services, mandating universal breast cancer screening and treatment, and improving access to diagnostic services for women less than 40 years old. Qualitative Data: Ensuring Community Input in Research The following section highlights findings from the qualitative data collection based on interviews with both providers and women diagnosed with late stage (Stage 3 and 4) breast cancers. Qualitative Data Sources and Methodology Provider Interviews Provider interviews constitute the Community Profile’s primary qualitative data. In order to understand and depict the context and conditions in which women’s breast screening and care occur in the state, Komen Connecticut conducted qualitative interviews with

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providers. Following the 2009 predominance of physicians and nurses in both the provider surveys and interviews, the Community Profile Team sought to broaden the view of women’s breast health and breast cancer needs by seeking to learn from the experiences of social workers. Social workers were sampled from the most populous areas of the state, based on their facilities of practice; facilities included existing Komen Connecticut grantees as well as hospitals and cancer centers in the selected geographic areas. Additional subjects were referred by those completing the interviews. Twelve providers with social work, nursing and health education/outreach responsibilities were asked about their perspectives on the state of breast cancer education, screening and treatment in the state; the majority of these providers were hospital-based. Some providers also provided specific case studies (narrative descriptions of individual, clinical cases) for illustrative purposes; nine case studies were considered in this analysis. Late Stage Cancer Interviews In addition to provider interviews, interviews were conducted with four women diagnosed with Stage III or Stage IV breast cancers. Komen Connecticut is interested in reducing the number of women diagnosed with late stage cancers and believed that lessons from the first-hand experiences of women further help target programs and funds to reduce late stage diagnoses in the state. Women were identified through two methods: 1) provider referral and 2) responses to an electronic request from the Affiliate. Four interviews were completed in time for inclusion in the Community Profile Report. Interviewees were diagnosed in different years and were living in various states of survivorship (where survivorship is defined by simply being diagnosed with cancer). Some interviewees were still in treatment, while others were presently cancer-free. Qualitative Data Overview Qualitative data findings have been categorized into the following themes: statewide and regional perceptions of breast health, adapting programs and services for diverse groups of women, three important breast cancer messages, care across stages of life and illness, and organizational /institutional challenges. The data presented here are not necessarily representative of all providers’ or women’s experiences with breast health and/or breast cancer throughout the state due to both small sample sizes and a reliance on convenience sampling. Provider data and survivor data are reviewed separately. Statewide & Regional Perceptions of the State of Breast Health Connecticut bears one of the highest burdens of breast cancer diagnoses in the nation. Interviewed providers reported perceiving significant improvement in the state’s breast cancer screening and diagnostic efforts over the last three to five years. Many believed that increased rates of cancer were attributable, at least in part, to improvements in diagnostics, more generally, and early detection, in particular. Despite universal

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agreement about improved breast cancer screening in the state, many also noted unsettling correlations between later diagnoses and low socioeconomic status with one provider stating “early detection has not yet reached many of lower socioeconomic status.” Secondly, many providers commented on noticeable changes in screening delays and insurance coverage as a result of the economic recession that began in 2008. Providers described seeing patients who: were responsible for higher insurance deductibles (as employers changed health plans), were on the verge of losing coverage (due to lost employment), lost insurance coverage when COBRA ran out or who had delayed routine screening and medical visits because of uncertainties related to insurance coverage and other financial issues. Two providers specifically mentioned the potential contributions of the high prevalence of triple negative breast cancer among African American women. As triple negative breast cancers are not treated as effectively as other types of breast cancer, these providers wondered about the potential overlap among urban areas of the state, the state’s African American population and some proportion of breast cancer morbidity and mortality attributable to triple negative cancers. The final perceptual shift in breast cancer work in the state is the increased presence of immigrant (documented and undocumented) and refugee populations who present new and unique challenges in terms of spreading messages about cancer prevention, screening and treatment. Providers are uncertain as to how changes in the population will change breast cancer rates and screening behaviors. This demographic change was noted throughout the state, but most discussed by providers in the Hartford area, Bridgeport, Stamford and the New London area. This important feature of how Connecticut’s demographic landscape is changing is described in more detail in the next section. Adapting Programs and Services for Diverse Groups of Women When asked about their work in promoting breast health and/or providing breast cancer care, providers almost unanimously mentioned a need for their organizations and programs to adapt or improve in order to better meet the needs of groups of patients deemed underserved as defined by their perceived lack of access to essential breast health services and care (as opposed to a socioeconomic definition of underserved). Table11 describes the various groups to which providers felt a need to respond better as well as specifics about how this population group is impacting health status and health care in the state or region. Providers participating in the interviews overwhelmingly stated that improving the utilization of screening services by Hispanic/Latina and African American women was both a priority and a challenge. Spanish-speaking and Latina populations were described as difficult to reach despite the fact that the majority of providers report providing services in Spanish and hiring outreach workers to work with Hispanic/Latina

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women. Providers also reported that Hispanic and African American women seemed to present with very late stage cancers or when significant breast health issues were tangible or obvious like a mass coming through the skin. Most providers believed that education, socioeconomic status, childcare, transportation and other competing life priorities prevent greater mammography use among these minority populations.
Table 11: Provider-Defined Underserved Populations Population Subgroup Potential Relevance to Cancer Burden African American Concentrated in certain areas of the state; access to health care, service and insurance limited from some; higher prevalence of triple negative cancers; lower levels of genetic testing Hispanics/Latinas Growing demographic group within most areas of the state; diverse subpopulations with different histories regarding the physical body, cancer, cancer screening and health beliefs; presence of fatalistic beliefs. Low income women Specialized providers deemed essential to help navigate health information and health care systems Underinsured Less help available for those with insurance, but who can’t pay despite insurance due to high deductibles or high co-pays; other insurance issues surface as well like clauses that provide concerning levels of screening and care; women in this group don’t understand that they may get some help and may delay screening and/or treatment for cost reasons Uninsured Programs exist to help take care of this population; however, more people need to understand the programs and take advantage of them. Immigrants and Refugees Many less familiar with cancer and concepts of routine screening or preventive care. Increasing numbers in certain areas of the state. Often demonstrate need for more diagnostic services. Undocumented residents Increasing numbers in certain areas of the state; many lack understanding about health care system and are ineligible for many government programs; finding ways to pay for care and services is often more challenging; lots of fear of revealing their status—many only present in crisis/illness.

While the majority of the state’s cancer incidence burden is borne by White women, most providers reporting making significant (if not always successful) attempts to reach racial, ethnic, and linguistic minority populations. African Americans and Hispanics/Latinas were frequently described as target audiences for outreach efforts. Further, increasing numbers of Asians and Muslims noted in and near the state’s major cities were described as being relatively new audiences for providers. These populations were described considered relatively unfamiliar with U.S. breast cancer screening and the availability of support programs if a cancer is diagnosed. Several providers reported an ongoing need to build trust and bridges to these newer Connecticut populations. Anecdotal evidence also revealed specific challenges facing the elderly, lesbians and the homeless. Three Important Breast Cancer Messages When thinking about the messages that needed to be conveyed to the general population about breast cancer, three messages emerged as most important. First,

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providers expressed a desire for increased and/or improved understanding of the importance of early detection. Despite improvements in screening and diagnosis across the state in recent years, many providers described meeting women who simply failed to realize the importance of early detection. Some of these women, as women diagnosed with late stage cancers, came to understand the critical importance of the early detection of breast cancers too late. Providers believe that there may be many misunderstandings about what a breast cancer diagnosis means today—with some women believing that the timing of a diagnosis doesn’t matter since cancer is a “death sentence” anyway. Providers really want women to understand that this is not true. Early diagnosis for many breast cancers significantly improves survival and outcomes. Secondly, providers want women to understand that when it comes to breast cancer, “knowledge is power.” Many providers discussed encountering women who for personal or cultural reasons simply did not want to know their cancer status. This desire to “remain in the dark” or not know one’s status reminded one respondent of the early days of HIV/AIDS testing. Knowing one’s cancer status can improve outcomes and survival as stated above, but additional testing can also help doctors understand a patient’s risk of future detection and how best to treat any cancers diagnosed. Finally, providers wanted to spread the word to women across the state that there are programs available to assist many different types of women, not just the uninsured or indigent. Though providers described how finding gap funding and support for working poor and undocumented women was difficult, these same providers thought it was important for women to understand that screening and care should not be delayed for fear of not qualifying for indigent care programs. All providers recounted cases where women delayed care or treatment because they had insurance (but could not afford the deductibles or co-pays) or were employed, and they believed they would not qualify for “free care.” Care and Services Across Stages of Life and Illness One of the most commonly reported concerns about and desires for breast cancer care in the state involved ensuring access to quality information and support throughout one’s health care experience from routine screenings and examinations to diagnostic services through cancer treatment, recurrence risk reduction and /or end of life care. Moreover, patient navigation, nurse navigation and other comprehensive case management support programs were frequently described as a potential solution. Respondents thought that in addition to improving individuals’ and families’ comprehension of cancer risk, diagnosis and treatment options, such programs would help reduce cancer patient stress, provide a centralized source of support and information, potentially help diagnosed women get into treatment quicker, and help provide seamless care by coordinating disparate services and providers. While some focused on ensuring continuity of care across various stages of cancer; others emphasized the need for improved coordination and communication between different provider types and facilities e.g. primary care physicians and oncologist or cancer center and hospital; and still others wanted to find ways to make sure that women’s

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cancer risks, diagnosis and treatment could be considered critically important for women starting at ages younger than 40 through elderhood. Many respondents believed that there has been an increase in the number of women under the age of 40 years diagnosed with breast cancers in their area. One respondent noted that the elderly women in her area of the state are “part of a different generation; a generation of women who may have missed the message about annual screening and many stop breast and cervical cancer screenings as they age, especially if they become isolated or are living alone.” Breast Cancer Screening and Diagnosis Considering screening on one end of the cancer spectrum, most providers interviewed believed that clinical providers, namely, gynecologists and primary care physicians, remain the primary way that women find out about breast cancer screening. Outreach activities were also described as important ways to encourage women to be screened. Outreach activities consisted of conventional health fairs and free mammography days to health education sessions conducted in a variety of locations: churches, communitybased organizations, clinics and senior centers. Women’s putting themselves last, lack of understanding about the risks of getting breast cancer and fear of what will be found were the three most common reasons for women to delay or avoid breast cancer screening or mammography according to the interviewed providers. Providers unanimously discussed the full schedules and busy lives of the women they see and noted that most did not include their own health and screenings unless an illness was disruptive to their work or schedule. Competing life priorities take precedence over breast self awareness and routine mammography for many women, particularly mothers/caregivers who also work outside of the home and single mothers. The majority of providers also noted the widespread misconception that a family history of breast cancer is the most important determining factor of one’s breast cancer risk. These providers reported women who could not believe that they had cancer since “no one in my family had breast cancer.” One quarter of providers interviewed described meeting women who simply preferred not to know their cancer status whether positive or negative; these women simply wanted to live without thinking about cancer. Insurance coverage, potential loss of pay (including lack of paid sick leave), language barriers and transportation were also described as potential barriers to appropriate breast cancer screening. Programs for the uninsured were simultaneously described as having significantly improved the uninsured’s access to care in recent years, but as also being underutilized or not sufficiently advertised. Further, though not the focus of these interviews, many providers reported learning of strange caveats and riders in insurance policies that seemed to threaten or endanger women’s health. Moreover, the lack of coverage for genetic testing was noted for both the insured and uninsured. Finally, one potentially important consideration for women’s delay in presentation was only mentioned by one provider, but seems worth mentioning here due to the perceived prevalence across demographic groups as well as its purported rise over the last few years. Based on this provider’s experience, the use of alternative remedies and

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healing methods to treat perceived health problems may initially delay presentation for routine screening and later delay initiation of treatment when cancers are diagnosed. When cancers are diagnosed, this provider described women as placing more faith in other healing modalities and wanting to try those before trying the treatment plans proposed by oncologists. This provider described women returning with more advanced cancers after trying alternative healing methods. As many cancer centers and programs presently embrace some complementary and alternative medicine (CAM) practices, this provider advised that those taking health histories or managing patients have to know how to ask question about such practices respectfully and the provider described the integrative center for health and wellness at her facility that allows oncologists to collaborate with alternative practitioners. Post-diagnosis and Treatment Needs Once women are diagnosed with breast cancer, providers reported the most significant challenges being related to personal finances, social/emotional needs and physical wellness. Almost all providers reported fewer challenges with women starting treatment in a timely fashion once cancer had been detected. In fact, most providers described how women no longer “fall through the cracks” when scheduling treatment or additional diagnostics. Moreover, according to providers, once women are sure of their breast cancer diagnoses, they become most concerned about: losing their job or financial footing, struggling with issues related to their body image and the apparent side effects of treatment i.e. losing hair, and emotional issues related to mortality and social relationships. Particularly for women in households or families dependent upon their income, the anxiety provoked by uncertainty about how the cancer diagnosis and/or treatment may impact one’s ability to work, earn income and pay the bills was described as overwhelming. Similarly, many providers described young mothers’ fear and anxieties around sharing their cancer diagnosis with their children. Others described women who struggled with whether or not they should keep their cancer secret from loved ones, employers, etc. Several providers described women who worked throughout their treatment despite being physically and emotionally exhausted. Organizational/Institutional Challenges In terms of the institutional and organizational challenges providers face while trying to advance breast health in the state, limited financial resources, mediocre continuity of care and limited access to services due to cultural or geographic barriers were most commonly described. Providers expressed an increased need to support uninsured, undocumented and underinsured women during the recent economic recession and lamented the lack of funding to support all of the women requiring services. Additional funds could be used to provide more: staff including navigators, screening and diagnostic services, treatment, genetic testing, cultural and linguistic interpreters, counselors and psychiatric staff and logistical support. Many providers thought additional money and/or staff could improve continuity of care if patients could rely on one person or comprehensive and thorough coordination process that could get them through cancer treatment and back to a primary care physician. A couple of providers cited the how access to services and care was limited in their geographic area due to

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the loss of funding for breast screening programs and the local population’s discomfort with traveling to distant towns for services. Most providers felt comfortable with their existing levels of language services though many noted that language remains a barrier for some women. These providers also believed there was more need for “cultural” (conceptual rather than language-focused) interpretation for many population groups since their understanding of bodies, health, health care and treatment may be very different from the U.S. medical model. Experiences with Late Stage Cancers Provider experiences with women diagnosed with or living with late stage (Stage 3 and Stage 4) breast cancers can be compared to the perspectives of four women with such diagnoses as well as three additional case studies written up by a provider. These data provide a snapshot of what life is like for women diagnosed with late stage breast cancers. Over the course of one’s engagement with the medical community from diagnosis and treatment through living with breast cancer as a chronic illness to end of life issues, women diagnosed with late stage or aggressive cancers often face a different path than women diagnosed with Stage 1 or Stage 2 breast cancer. Though anecdotal, the stories provided by women and providers can help the Affiliate and others working to fight breast cancer think about addressing the unique needs of this subpopulation of breast cancer survivors. Women with late stage cancer diagnoses in this analysis arrive at a cancer diagnosis in two ways: 1) during routine screening or 2) when presenting with tangible evidence (a painful lump, changes in the skin, etc.) that something is wrong with their breast(s). Many of the women described for this report, showed up at a physician’s office believing something was very wrong; less than half of these women showed up after lapses in regular medical care or insurance coverage. These accounts align with providers’ reports of both how women arrive at their initial late stage diagnosis as well as providers’ perspectives that the common factor among late stage women is having “full lives,” “more pressing personal issues,” and a tendency to put themselves last. These character traits were described by almost all providers as being what women with late stage cancer diagnoses had in common. The only other potential commonality was the likelihood that a woman had an aggressive cancer type. Providers did not report any other similarities among those women diagnosed with late stage breast cancers including age group or race/ethnicity. Only women without insurance and/or lapses in insurance reported waiting (one month to six years) before going to a provider—most of these women relied on the state’s CBCCEDP. Consistent with providers’ reports of seeing younger women diagnosed with cancer, three of the four women interviewed were less than or very close to 40 years of age when they received their initial breast cancer diagnosis. Forty years is the age at which most national guidelines suggest women should begin annual mammography. Once diagnosed with a late stage breast cancer, variations in women’s treatment and care seemed to stem from characteristics of their cancers rather than access and availability of health care. Patient experiences after breast cancer diagnosis seem to

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corroborate provider claims that delays between diagnosis and treatment/illness management are less common than in years past. Women reported fairly quick timelines between steps once cancer was diagnosed, with the most critical delays occurring prior to screening and diagnosis. Access to surgeons, chemotherapy, radiation and prescriptions were described as timely and adequate by most. One woman mentioned a little difficulty identifying a plastic surgeon for reconstruction in her geographic area. Depending on one’s prognosis and treatment options, the psycho-social and emotional support needs of women diagnosed with late stage cancers are different from those of other breast cancer survivors. While two women reported positive experiences with cancer support groups, women and providers overwhelmingly agreed that support groups do not work for many late stage women. Women interviewed said that the discussions taking place and the sense of hope present for many of the women in most cancer support groups did not reflect their lives with breast cancer or their needs; two of the women relied heavily on internet or virtual support communities. Both women described a need to maximize their time with their family/loved ones and how internet support allowed them to not take time away from their families while fulfilling their emotional support needs as needed from the comfort of their own homes. Several women also described how the nature of one’s relationship with cancer differs if you are expecting to treat the cancer (and rid yourself of it. . . at least for a time) versus living with cancer as a chronic disease. When cancer will be part of one’s life for the rest of her days (though the years may be numerous), one has a different mentality than someone “fighting” the illness. Women with late stage cancers live with various diagnoses, prognoses and treatment options available to them with many women receiving infusions or treatments for the rest of their lives in order to slow the progression of cancer and maintain a certain quality of life. In terms of needs, women and providers believed the following things would be helpful to women facing late stage diagnoses:           A cancer advocate who could help present evidence and experience to women and help women make decisions and communicate with health care providers when overwhelmed Differently packaged psycho-social and emotional support—more one-on-one counseling Psycho-social and emotional support and information for spouses, partners and children Counseling and therapy to address feelings of guilt Assistance with family care and housekeeping Assistance with retirement planning Assistance with financial planning Assistance with estate and end of life planning Managing loss of income/work as condition deteriorates Bereavement care with families after death

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Other needs mentioned—transportation and child care—were similar to the needs described for all women diagnosed with breast cancer. However, providers thought it was important to provide support and attention for single women without family or significant others and younger women (close to 40 years) who were part of young families. Finally, it is of note that among these interviews and cases of women diagnosed with late stage cancers, very few cultural factors were described as impacting women’s screening or treatment decisions. One woman described her religious beliefs and the support of church members who had also been diagnosed with breast cancer as being critical elements of her support system. Two women described how being raised to be “strong” impacted their initial approach to their cancer diagnosis (they should just fight it) as well as the way they managed their lives during treatment. One of these women described herself as “powering through” her tasks of daily living despite being exhausted from treatment. Another said when she most needed “extra hands” she did not realize that programs existed to help out around the house or with the kids. The final cultural element presented relates to a Puerto Rican woman who traveled from the island to Connecticut for breast care, but who remained uncertain about where to seek care once she arrived due to language barriers and lack of information about accessing the health care system. Summary of Findings Within this year’s exploratory data efforts, social and cultural barriers and needs seemed most prominent. While educational and informational aspects of breast cancer service and care figured prominently, respondents sampled for both the quantitative and qualitative data collection projects were more likely to talk about social and cultural aspects of breast cancer rather than their educational/informational counterparts. In the 2009 Community Profile Report, educational and informational needs and barriers were most mentioned. As needs among providers and consumers are unlikely to change drastically over a two year period, it makes sense that educational/informational issues were still considered important. The shift in prominence is likely a reflection of differences in the sample such that social workers, patient navigators, program managers and case managers comprised a greater proportion of providers than in previous data collection efforts. These types of providers may be more familiar with and used to responding to patients financial, social and personal concerns. Moreover, the salience of socioeconomic factors in light of the economic crisis as well as the attention paid to changes in health care coverage and policies may have helped social and cultural issues rise in prominence. In addition to the shift from education/information to social/cultural barriers or challenges, these data also seem to shift away from organizational and institutional issues towards challenges with the consumers/women themselves. Table 12 describes statewide breast health needs identified by the Community Profile process. Opportunities exist within the state to increase and improve breast health promotion as well as ensure that existing laws, policies and programs to support breast health are enacted, periodically evaluated and enforced.

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Table 12: Statewide Breast Health Needs Breast Health and Breast Cancer Needs for the State of Connecticut  Women lack knowledge about programs and services available to them as well as the importance of screening and early detection. Women may also not realize how treatable breast cancer may be when diagnosed early.  Diverse types of minority populations and the uninsured/underinsured are at particular risk for forgoing recommended breast screenings.  Programs for the uninsured, in particular, may be insufficiently advertised or promoted.  Perceived costs or believing that treatment cannot be afforded may be a barrier to presenting for screening among women.  There is a need for additional diagnostic services beyond mammography among many populations who lack coverage or who cannot afford to pay for these services.  Patient navigation, nurse navigation, intensive case management and/or similar programs might be useful for helping women cope with screening amidst other life challenges. These programs may also help women navigate diagnosis and treatment while prioritizing their own health amidst competing priorities.  The location of screening services in areas that minimize travel and time for women might help improve screening and follow up as many women have limited time available to devote to well visits due to work and family obligations.  Agencies are often limited in their outreach due to their finances, staffing and lack of evidence about what works.  Financial assistance for those diagnosed with cancer to help offset a variety of costs including treatment, home help; rent, utilities and other basic needs; and to help stabilize households during recovery and/or transition was frequently mentioned as a need.  Provider and provider systems can help encourage women to be screened.  The role of women as advocates in their own health care in important. In terms of breast health, this includes women knowing their own bodies and being able to detect changes.

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SELECTING AFFILIATE PRIORITIES ……………………………………………………………………………………………………… The Community Profile Team, with additional input from Sakinah Carter Suttiratana, a private consultant hired to perform the qualitative research, selected the priorities to present to the Board of Directors. The priorities were selected after reviewing the findings in the report and comparing the findings with those of the 2009 Community Profile Report. Priorities and areas of emphasis were changed and updated in light of additional community and statistical data. The Komen Connecticut Board of Directors was presented with the priorities as recommend and ranked by the Community Profile Team and voted to approve them. The priorities and recommendations will influence the Komen Connecticut strategic plan, FY 2012 request for proposals and other mission and non-mission efforts.

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KOMEN CONNECTICUT PRIORITIES ……………………………………………………………………………………………………… Priority 1: Strengthen and build the capacity of existing breast health providers to identify, provide, and or refer patients to appropriate breast health and breast cancer programs and services in cities and towns demonstrating the highest burden of breast cancer morbidity and mortality. Priority 2: Promote breast health awareness and the importance of screening and early detection among women across the state. Priority 3: Increase screening resources available to women in selected cities and towns with an emphasis on high risk women, underserved women and selected women under the age of 40.

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AFFILIATE ACTION PLAN AND RECOMMENDATIONS ……………………………………………………………………………………………………… Priority 1: Strengthen and build the capacity of existing breast health providers to identify, provide, and or refer patients to appropriate breast health and breast cancer programs and services in cities and towns demonstrating the highest burden of breast cancer morbidity and mortality. Objective 1: Develop and issue a request for proposals to solicit provider education grant(s) to develop and deliver a model of primary care provider breast health education including screening recommendations, clinical breast exam instruction, information about state resources (CBCCEDP and others), assessing patient risk and systems management practices to improve statewide breast health. Objective 2: Conduct targeted outreach to solicit grant applications from providers in the following practice settings: primary care, gynecologists, medical practice directors and administrative directors of medical groups. Objective 3: Facilitate partnerships between agencies in an affirmative fashion, i.e. between providers or provider agencies and non-traditional breast health organizations like faith-based organizations, social and cultural organizations, libraries, etc. to extend the reach and penetration of breast health messages. Priority 2: Promote breast health awareness and the importance of screening and early detection among women across the state. Objective 1: Through grant efforts , improve consumer awareness about screening programs and services in targeted communities throughout the state including increasing awareness about free or low-cost breast health programs and services since more women are eligible than are currently covered by existing programs Objective 2: Through grant efforts, support specific patient empowerment interventions focused on improving patient-provider communication about breast health/breast cancer or improving access to useful tests (e.g. genetic) or diagnostic procedures (e.g. ultrasound for women with dense breasts). Objective 3: Target applicants who will submit proposals that will address outreach myths about breast cancer in the state, namely, the overstated importance of family history and the importance of yearly screening and education efforts consist of more than a brochure or pamphlet Objective 4: Target applicants who will partner with unconventional, non-clinical entities with outreach and internal evaluation efforts that reflect demographic trends that reflect critical underserved populations.

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Priority 3: Increase screening resources available to women in selected cities and towns with an emphasis on high risk women, underserved women and selected women under the age of 40. Objective 1: Through grant efforts, encourage screening of women over 40 years of age and over in targeted cities and towns throughout the state. Through grant efforts, encourage screening of high-risk and symptomatic women under 40 years of age in areas of the state with high rates of morbidity and late stage breast cancer diagnoses and support programs that provide assistance to women under 40 with age specific barriers to screening such as child-care. Objective 2: Continue to work to change Connecticut from an Option 1 to an Option 3 state for Medicaid-funded breast cancer treatment and to support continued state funding for breast health services. Objective 3: Support patient navigation and continuity of care programs that intend to increase screening and improve the quality of follow up from diagnosis through treatment and replicate other effective, evidence-based practices that engage underserved populations in breast health and breast cancer screenings. Objective 4: Facilitate access for racial and ethnic minority populations in the identified geographic areas by supporting culturally appropriate, creative outreach strategies and partnerships.

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1

U.S. Cancer Statistics Working Group. United States Cancer Statistics: 1999–2007 Incidence and Mortality Web-based Report. Atlanta: U.S. Department of Health and Human Services, Centers for Disease Control and Prevention and National Cancer Institute; 2010. 2 Connecticut Tumor Registry. 3 Connecticut Department of Public Health. 4 Connecticut Tumor Registry 5 Ibid. 6 Centers for Disease Control and Prevention (CDC). Behavioral Risk Factor Surveillance System Survey Data. Atlanta, Georgia: U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, [2008]. 7 Ibid 8 Finison, Ph.D. Lorenz J., Commissioned by the Connecticut Health Foundation. Community Health Data Scan for Connecticut. March 2007. Available at http://www.cthealth.org 9 Noss, Amanda. (2010). Household Income for States: 2008 and 2009 American Community Survey Briefs. U. S. Department of Commerce, Economics and Statistics Administration, U.S. Census Bureau. 10 U.S. Census Bureau, 2010 Census 11 All figures in this table are from the U.S. Census Bureau, 2010 Census unless otherwise indicated 12 U.S. Census Bureau, 2005-2009 American Community Survey 13 SAHIE//State and County by Demographic and Income Characteristics/2007 14 Ibid. 15 U.S Census Bureau. 2005-2009 American Community Survey 16 Ibid. 17 Ibid. 18 Ibid. 19 Ibid. 20 2003. CMMS report recommending patient navigator demonstration projects. Federal demonstration projects were funded in 2007. 21 http://www.gao.gov/htext/d09384.html. 2009. Report GAO-09-384,”Medicaid: Source of Screening Affects Women's Eligibility for Coverage of Breast and Cervical Cancer Treatment in Some States”. Released June 22, 2009. 22 Kaiser Family Foundation. 2008. State Health Facts website: http://www.statehealthfacts.org/index.jsp 23 University of Texas M. D. Anderson Cancer Center (2010, September 30). Women with triple negative breast cancer and BRCA mutations have lower risk of recurrence, study finds. ScienceDaily. Retrieved April 28, 2011, from http://www.sciencedaily.com /releases/2010/09/100929191314.htm

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For more information: 860.321.7806 info@komenct.org www.KomenCT.org

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