BREAST HEALTH COMMUNITY ASSESSMENT

Transcription

1 2011 BREAST HEALTH COMMUNITY ASSESSMENT Susan G. Komen for the Cure North Central Alabama & The Women s Breast Health Fund of the Community Foundation of Greater Birmingham

2 Acknowledgements Kay Argo, MPA Administrative Director Auburn University Urban Studio Silvia Gisiger Camata, RN, MPH Program Manager, Rural Breast Cancer Survivors Study School of Nursing, University of Alabama at Birmingham Kathryn Corey Vice President of Donor Relations Community Foundation of Greater Birmingham Madeline Harris, RN, MSN, OCN, CBCN Advisory Committee Chair, Women s Breast Health Fund of the Community Foundation of Greater Birmingham Research Nurse, Rural Breast Cancer Survivors Study School of Nursing, University of Alabama at Birmingham Mandy Heard Development Coordinator Susan G. Komen for the Cure North Central Alabama Shirley Jackson Education Chair Susan G. Komen for the Cure North Central Alabama Beverly Laird, Ph.D. Vice-President, Susan G. Komen for the Cure North Central Alabama National Komen Advocates in Science Program Kim Rogers Grants Specialist, Consultant Community Foundation of Greater Birmingham Kumari Seetala, M.S. Breast and Cervical Cancer Division, Bureau of Family Health Services, Alabama Department of Public Health Lora Terry Development Coordinator Community Foundation of Greater Birmingham Deborah Walker, DNP, FNP-BC, AOCN Assistant Professor, School of Nursing University of Alabama at Birmingham President of the Central Alabama Chapter of the Oncology Nursing Society Ann Wooten, RN, BSN, OCN Research Nurse, Rural Breast Cancer Survivors Study School of Nursing, University of Alabama at Birmingham Nancy Wright, MPH Director, Breast and Cervical Cancer Division, Bureau of Family Health Services, Alabama Department of Public Health Ellen Zahariadis, M.A. Executive Director Susan G. Komen for the Cure North Central Alabama Karen Meneses, PhD, RN, FAAN Principal Investigator, Rural Breast Cancer Survivors Study Professor and Associate Dean for Research, School of Nursing University of Alabama at Birmingham Advisory Committee, Women s Breast Health Fund of the Community Foundation of Greater Birmingham Disclaimer: The information in this Community Profile Report is based on the work of the North Central Alabama Affiliate of Susan G. Komen for the Cure and the Women s Breast Health Fund of the Community Foundation of Greater Birmingham in conjunction with key community partners. The findings of the report are based on a needs assessment public health model 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 non-infringement of any of the programs, projects, materials, products or other information included or the companies or organizations referred to in the report. 2

3 Table of Contents Acknowledgements Executive Summary... 4 Introduction...4 Statistics and Demographic Review... 5 Health Systems Analysis...6 Qualitative Data Overview...6 Conclusions...8 Introduction...10 Organization History and Structure Description of Service Area/Region Demographics / Communities of Interest Breast Cancer Impact in the Area Methodology...17 Incidence...17 Stages of Diagnoses...18 Mortality Rate...18 Health Systems Analysis of Target Communities...19 Methodology Access to Care Community Assets Key Informant Findings...21 Breast Cancer Perspectives in the Target Communities Methodology Community Survey Underserved Community Survey...27 Site Visits...28 Focus Groups...28 Conclusions: What We Learned, What We Will Do Appendix

4 Executive Summary Introduction The 2011 Breast Health Community Assessment is a collaborative initiative between Susan G. Komen for the Cure North Central Alabama and the Women s Breast Health Fund of the Community Foundation of Greater Birmingham. Breast cancer affects approximately one in eight women in their lifetime and about 1% of breast cancer patients are men. Breast cancer encompasses many cell types and treatments, all which should be individualized for the specific patient and family. The effect of breast cancer on the patient, family, and friends as well as the community at large is a major health and societal issue. Addressing the identification, diagnosis, treatment and care of those affected by this disease is a critical thrust in health care today. This assessment was designed to help us better understand the reality of breast cancer in Alabama and the community s knowledge, attitudes and behavior towards breast cancer. While we know that there are some necessary and successful programs and services for breast health care currently in place, the profile will aid in identifying program and service gaps, as well as needs and barriers that exist in services and programs for breast cancer survivors and their families and loved ones. This information helps pinpoint where efforts will have the most impact, to ensure the most effective and targeted use of organization resources. The collaborative nature of this initiative illustrates the power and necessity of similarly focused organizations working together to tackle the far reaching issues that breast cancer and breast health raise. Our hope is that this assessment will serve as a catalyst to policy change at the local and state level and will create a framework for comprehensive breast care in Alabama. The Community Foundation of Greater Birmingham (CFGB), established as a public charity in 1959, leverages gifts and bequests from many people to drive positive change. It brings people together from all walks of life to address community issues, build on opportunities and achieve measurable results. The CFGB works in partnership with others, including area nonprofits, to improve the life of our region, specifically Jefferson, Shelby, St. Clair, Blount and Walker counties. The Women s Breast Health Fund (WBHF) of the CFGB is a Field of Interest Fund established to support holistic breast cancer care for women and their loved ones throughout the five-county CFGB region. The WBHF s Advisory Committee, a group of community volunteers and leaders, believed that an understanding of the community served was necessary before making any recommendations for funding. Some Advisory Committee members are active Susan G. Komen for the Cure volunteers and participated in the planning and execution of this assessment. The WBHF s mission covers diagnosis through follow-up care within the breast cancer continuum: to make life better for women and their loved ones who are facing this disease. Susan G. Komen for the Cure, now the world s largest breast cancer organization and the largest source of nonprofit funds, was founded in 1982 by Ambassador Nancy G. Brinker, who promised her dying sister, Susan G. Komen, she would do everything in her power to end breast cancer forever. The North Central Alabama Affiliate, officially formed in 1994, works through a cadre of passionate, driven volunteers and a small, 3 person, staff to fulfill the Komen Promise to save lives and end breast cancer forever by empowering people, ensuring quality care for all and energizing science to find the cures in our local 38 county region. Affiliate sponsored educational and outreach programs, along with our community grants program, put the Komen Promise into action each day. Current affiliate programs include: a no-cost, trained Speakers Bureau, free monthly Lunch and Learn opportunities, Worship in Pink faith-based community outreach, and advocacy efforts. Our Community Grants program has seven grantees totaling over $647,000. 4

5 Statistics and Demographic Review To establish a foundation from which the Community Profile could be built, statistical information regarding demographics, breast cancer incidence, and breast cancer mortality was obtained from Thomson Reuters 2010, Alabama Department of Public Health (2010), the American Cancer Society (2009, 2010) and the Centers for Disease Control and Prevention (2008, 2009 Behavioral Risk Factor Surveillance System Survey Data). Unless otherwise stated, all statistical references in this document are attributed to Thomson Reuters Review and analysis of the data produced a statistical picture or snapshot of our service area, allowing us to hone in on areas of greatest need as well as areas outside of the norm or mean for our service area. The demographic makeup of the region is predominately white (72.1%), female (51%), 35 to 54 years of age (27.9%). The majority (76%) have a high school degree or higher and the average household income is $57,585 (20% below the U.S. national average, Thomson-Reuters 2010). Over 40% of the population lives in seven counties clustered in the north central part of the state. There are, however, great demographic disparities within our service area, which includes some of the most populated, highest income counties and some of the least populated, lowest income counties, both rural and urban. Of particular note are five counties in the southwest corner (SWC) of the region: Pickens, Sumter, Greene, Hale and Perry counties. These counties have the highest percentage of uninsured females, the highest percentage of families with income below poverty level, the highest percentage of women age 40 and up who have not had a mammogram in the past twelve months and the highest percentage of late stage diagnosis (stages III & IV). Greene County also has a mortality rate that is nearly twice as high as that for other counties in our service area. SWC counties also have the highest percentage of African American/Black residents ranging from 42.7% African American/Black in Pickens County to 77.6% African American/Black in Greene County. In addition, these counties have among the lowest literacy rates in our service area, according to the U.S. Department of Education, Institute of Education Sciences, National Center for Education Statistics, 2003 National Assessment of Adult Literacy. Other areas of note include Shelby County which has the youngest age for prevalence of breast cancer at years of age (> 3 standard deviations below the service area mean of 59.5). The demographic makeup of Shelby County is predominantly white (83%) with the highest median family income and lowest rate of families below the poverty level of our service area. Although we will not include it in our in-depth demographic analysis, it is worth noting that Cherokee County, located on the north east Georgia border has both the highest female breast cancer incidence rate but also the lowest death rate in our service area. The demographic makeup of Cherokee County is predominately white (91%) with an average family income below the median and a higher than average percentage of families with income below the poverty level. Additionally, according to the Pew Research Center s analysis of U.S. Census information, Alabama s Hispanic population grew an estimated 145% between 2000 and 2010, the second highest percentage growth in the nation. Hispanics currently represent 3.9% of the state population. Hispanics in Alabama are more likely to come as recent immigrants, and the majority is undocumented. They are more likely to be of young age, have low income and educational background and be born abroad. They experience barriers including lack of transportation, language, lack of health insurance and poor access to health services. Eight of the ten Alabama cities with the highest percentage growth of Hispanic residents are within the North Central Alabama service area and seven of these cities are located within the Birmingham Metro Area. This community profile will focus primarily on two community clusters within our service area: 1) the Birmingham Metropolitan Area (BMA) of Jefferson, Tuscaloosa, Bibb, Walker, Blount, St. Clair and Shelby counties and 2) the south west community cluster (SWC) of Pickens, Sumter, Greene, Hale and Perry counties. The BMA cluster was chosen for in-depth analysis because it includes the most densely populated counties in our service area, includes statistical and demographic variety among its counties, and is representative of the service area as a whole. The SWC cluster was chosen because of the great socio-economic and health disparities within its counties, as well as its demographic differences to the north central Alabama service area as a whole. It is also felt that both clusters represent areas of great need and areas in which there may also be great impact. 5

6 Health Systems Analysis In order to understand the health system in our target areas, the Community Profile Team used a variety of tools designed to help us understand who is doing what in our community, who works with which groups and what are some of the issues these providers and organizations face in providing breast health care in these communities. Our analysis included data and asset mapping of service providers, key organizations and county statistical data. Both community and key informant surveys were conducted, with the addition of follow-up telephone interviews for key informants. Site visits with major hospitals and health systems within the greater Birmingham area were held. Although site visits were limited to Jefferson and Shelby counties, these major treatment centers also serve women who reside in counties outside the greater Birmingham area. Finally, focus groups were conducted with discrete groups of breast cancer survivors, including young women, underserved women and African American women. We conducted an analysis of breast health service providers and facilities throughout north central Alabama. We also gathered information regarding the number of women eligible for the Alabama Breast and Cervical Cancer Early Detection Program (ABCCEDP) and the number of women accessing/served by the program. Additionally, we gathered information on and listings of Certified Mammography Facilities, Cancer Treatment Centers, Department of Public Health Offices and ABCCEDP Providers from the Alabama Department of Public Health, U.S. Department of Health and Human Services Food and Drug Administration and the American College of Radiology (ACR). Mapping of this information revealed great gaps in the availability and accessibility of mammography and cancer treatment facilities in our service area. Of particular note is the lack of certified mammography facilities and cancer treatment centers in the southwest community cluster (SWC) previously identified. Residents of the SWC counties are faced with both a lack of breast health services and a lack of public transportation to access those services. Many are referred to screening and treatment facilities over 50 miles away. Lack of access, in its many forms, emerges as the key Health Systems issue. Lack of access includes: 1) the lack of actual facilities and providers in rural, low income areas, 2) lack of coordination or knowledge of services or programs that are available, 3) the lack of a public transportation system linking rural and urban areas, 4) the lack of financial and or support resources to help with transportation (both cost and access to reliable transportation). Knowing this, we can work with partners like the American Cancer Society to advocate for the improvement of public transportation, work with state and local leaders to advocate for the opening of healthcare facilities in underserved areas and take a lead role in promoting and executing these services. In addition, we know that of the 50,607 women age eligible for the ABCCEDP in Komen s service area of North Central Alabama, only 8,829 or 17% were screened in We believe this low number is the result of a lack of access, lack of awareness and the lack of financial resources/capacity for the ABCCEDP, as well as a lack of willingness by women to get a mammogram. The lack of access and awareness can be more readily addressed through a collaboration of community partners. Increasing funding for the ABCCEDP and building its capacity so that the program is able to meet the needs of eligible women in our State require a deep commitment by the State of Alabama (heretofore not demonstrated, and a challenge in a declining budget environment) and a comprehensive, systematic plan to build the infrastructure needed to make the program successful and to ensure provision of the funds needed for a full capacity program. Qualitative Data Overview In addition to the need for increased screening, particularly in rural, low-income, and underserved populations, we found a lack of supportive programs addressing the needs of breast cancer survivors and their families. A Community Survey was conducted September-October 2010 with 994 responses representing survivors, cosurvivors, family members, friends, community volunteers and health care providers. Respondents represented 18 counties in Alabama and 84 zip codes within the counties. Slightly over 45% of survey participants were between the age of 31 and 50, 31% of survey participants were over the age of 50 and over 90% were female. Of the 994 individuals surveyed, 209 respondents were breast cancer survivors: 208 female, 1 male. Although respondents could choose more and one category, 359 identified primarily as a family member of a breast cancer survivor, 261 as a friend of a breast cancer survivor and 37 as a health care provider for breast cancer survivors. The survey was distributed during packet pick up, two weeks prior to the 2010 Race for the Cure; additionally, the survey was distributed on site, the day of the Race. The survey consisted of 12 questions focusing on breast cancer survivors and co-survivors and their experiences before, during and after treatment. The aim of the survey was to explore all areas of the continuum of care model so as to identify gaps and needs within the continuum from the survivor/co-survivor perspective. 6

7 Two areas of need emerged as a recurrent and common thread among respondents: 1) Greater support programs and services for both survivors and their families; Comments included support services for survivor s children, I needed direction and guidance, spiritual counseling, help in dealing with the diagnosis mentally, needed help or advice on how to support my schoolaged son when I was so scared, treatment is good in the greater Birmingham area, supportive care is an afterthought, caregivers need to be given more instruction on how to handle grief, anxiety and hope; as the husband of a breast cancer survivor I had to just learn as I went all on my own, more group support no one understands how you feel but someone going through it too, someone to talk to, support groups for daughters who have moms going through breast cancer. 2) More readily available information about treatment options and aftercare/survivorship issues (i.e. dental issues for cancer survivors, lymphedema, fertility, sexuality): Comments included need to know about different options for treatment, need information on things like dental and other services not related to cancer but affected by cancer, need financial counseling, need return to the workplace counseling, palliative care, transportation; something like KidOne, information on new treatments, more information on good nutrition and other ways to stay healthy, more awareness of the BRCA genetic test for family members. These responses indicate wide gaps in support services and programs for breast cancer survivors and their families. More information, both pre- and post- treatment, targeted to the needs of individual survivors and their families and better coordinated communication between patient and doctor/health care providers emerge as the areas of greatest need. In addition to identifying gaps/areas of need, survey respondents also identified what they saw as barriers or obstacles to screening. The most frequently identified barrier was the lack of services/affordable screening for young women and uninsured women: exams for newly diagnosed who are unemployed or have no insurance, screening for family members of survivors, even if under 40, free mammograms or treatments that are not so expensive, more access to screening (free mammograms) for high risk family members, and some people don t know where they can get mammograms. The insight gained from these surveys will help guide activities to help address the information gap and will provide direction for grant funding priorities. The Community Survey was also distributed to a targeted group of uninsured or underinsured breast cancer survivors. After obtaining informed consent, ABCCEDP participants who were diagnosed with breast cancer in the greater Birmingham area were invited to complete the Community Survey and have follow-up interviews. The Alabama Department of Public Health mailed all surveys to ensure confidentiality. Of the 130 surveys mailed, 36 were returned as undeliverable, 30 were returned completed, and 24 of the 30 respondents provided their name and contact information for follow-up. All 30 respondents lived in the BMA, with 60% residing in Jefferson County. Areas of need identified were similar to the wider Community Survey, but with added emphasis on financial concerns: financially and emotionally the need is great, no insurance, low income, no support; I may be a survivor but I still have medical problems with no support, help with payments for patients with lymphedema; more help to go to this for sleeve and glove, some kind of service to help those going through cancer treatment that don t have caregivers at home. The Community Profile Team also created a Key Informant Survey. 71 Key Informants, identified by the team, were personally invited to participate. 66 agreed to complete the survey and participate in a follow-up telephone interview. Interviewers were members of the Community Profile Team who completed interviewer training for consistency. All but one Key Informant received the survey via the on-line survey provider Survey Monkey. Key Informants are representative of the North Central Alabama region, with a greater concentration of informants in the two target areas. The Key Informants are also representative of the health care spectrum, including survivors, co-survivors, Oncologists, Nurse Practitioners, Oncology Nurses, Hospital Administrators, Researchers, Public Health Specialists, and Alabama Breast and Cervical Cancer Early Detection Program Coordinators. Forty-Five completed surveys were collected. Six Key Informants completed the survey but were never interviewed. Four Key Informants were interviewed but never completed the survey. 7

8 Several recurring themes emerged from the survey results: 1) There are inadequate services and programs for low-income, uninsured and /or underinsured individuals 2) After Medical Doctors, friends and breast cancer survivors are cited as those to whom one would most likely go to for breast health information. 3) Health fairs and other community events are cited as the most effective way to disseminate breast health information. 4) The greatest barriers to breast health education and awareness are myths and false information, lack of education/low literacy, and lack of awareness of breast health programs/services. 5) The greatest barriers to breast health care access are lack of public transportation, living in a rural area and limited hours of operation for the clinic, hospital, or provider. This information supports and encourages continued efforts in the areas of advocacy/public policy, outreach and awareness and volunteer development. Survey results will also serve as a discussion guide with grantees, state and local leaders, and community partners. Six site visits were conducted with representatives of the WBHF, Susan G. Komen and breast health/cancer providers in the greater Birmingham area. While the scope and structure of the site visits varied, we achieved the overall goal of learning about the services, programs, needs and long-term plans of the institutions. Although site visits were conducted only in Jefferson and Shelby counties, it is important to note that these breast health/cancer treatment centers serve a large percentage of patients from other counties in North Central Alabama. Information gathered from these site visits will be used to encourage communication and cooperation between sites and to prevent unnecessary duplication of services. Additionally, Komen staff met with a group in Sumter county (part of the SWC), which included a local physician, ABCCEDP coordinators and Community Health Advisor volunteers to assess the services, programs and needs of the health care system in the SWC counties. Finally, two focus groups were conducted with women from each of two groups: young (under the age of 50) breast cancer survivors, and uninsured/underinsured women who participated in the ABCCEDP. All lived in the BMA and received their treatment at one of the 6 breast health/cancer providers that were sitevisited. The purpose of the focus groups was to assess breast health/cancer knowledge, specific needs and barriers in relation to breast cancer education, screening, diagnosis, treatment and survivorship issues. When talking about their own cancer experiences, many women in the young survivor group expressed the need for age-appropriate support: would like to be matched with a survivor who was the same age with the same diagnosis. As for support groups, it was more important to be with people my own age. Several expressed the need for a true patient advocate, a care coordinator to prevent miscommunication. Because they may have young children, young survivors may feel a greater sense of guilt; I felt guilty that this was happening to my husband and children, and I wish someone had been able to prepare my family, especially my children, for Mom s surgery they needed to know what was happening, what I was going to look like. As in the Community Survey with ABCCEDP participants, the women in the uninsured/underinsured focus group were primarily concerned with the economic result of their disease; financial counseling would have been a blessing. One specifically mentioned job counseling as a need; I still cannot work due to my lymphedema; I cannot afford a sleeve, I tried to go back to my job but they couldn t understand why I wasn t able to do the things I used to do. Conclusions Several general conclusions can be drawn from the community assessment process. The common thread across all areas of our community analysis is the lack of insurance or finances for adequate breast health services. This thread is complex with many individual strings binding together to create a significant and far-reaching barrier that affects all aspects of the continuum of care (Screening, Diagnosis, Treatment and Follow-up) for women in our area. It is clear that education and awareness efforts, regarding both basic breast health, screening and survivorship/quality of life issues, need to be increased and made readily available to those in need. Availability of services necessary throughout the continuum of care needs be broadened. In particular, survivorship services and programs for both breast cancer patients and their families are currently inadequate or not offered. 8

9 To address these areas of need, Susan G. Komen for the Cure and the Women s Breast Health Fund of the CFGB have identified the following priorities and action steps. Each will work to address those priorities that are consistent with their mission statements and resources. It is our hope that other members of the breast health community will come together to address these priorities as well. 1. Strengthen and build the capacity of community breast health providers and grantees such as the ABCCEDP, targeting areas with the greatest lack of providers/services. Devote resources to develop a vibrant active Public Policy/Advocacy initiative to build relationships with key elected officials and policy makers and ensure advocacy efforts are incorporated into all organization activities. Cultivate existing collaborative relationships with organizations such as the ABCCEDP and the Joy to Life Foundation, to leverage financial resources for breast health screenings and effect long-term policy changes so as to build the capacity and scope of breast health services. Build collaborations with organizations to help address transportation and access issues, addressing both immediate transportation needs and long-term public transportation advocacy efforts, with particular attention to rural area. 2. Increase and improve breast health awareness and screening promotion efforts among all underserved women, especially African American women, throughout the region, with particular attention to the SWC counties (Sumter, Greene, Hale and Perry). Develop culturally sensitive, low-literacy breast health education materials. Initiate partnership with area Literacy Council to brainstorm innovative programs/services to address and improve literacy rates so as to increase breast health literacy. Establish relationships and partnerships with places of worship in the SWC counties to increase awareness and dispel myths and false information. 3. Increase availability and awareness of programs and services that address survivorship and quality of life issues and concerns for breast cancer survivors and their families. Collaborate with other area cancer related organizations to identify and maximize resources and support programs for survivors and their families. Create an awareness of, and focus on, survivorship and quality of life issues and promote incorporation of survivorship information and resources into the treatment plans for breast cancer patients and their families. Work with partners to create programs and initiatives that address all aspects of the continuum of care. 4. Encourage and facilitate collaboration among breast cancer organizations and programs within the state. Focus dissemination of the 2011 Community Assessment on the collaborative effort between the Susan G. Komen for the Cure North Central Alabama affiliate and the Women s Breast Health Fund of the CFGB in planning and completing the community profile. Encourage breast health/cancer providers to work together to remove barriers such as limited provider hours that prevent women from accessing care Serve as a mediator between area breast programs to initiate discussion regarding duplication of planned services, as well as the lack of needed services. Empower survivors and their loved ones to demand necessary services. 9

10 Introduction Organization History and Structure Community Foundation of Greater Birmingham and the Women s Breast Health Fund of the Community Foundation The Community Foundation of Greater Birmingham (CFGB), founded in 1959, is today the oldest and largest community foundation in Alabama. CFGB leverages gifts and bequests from many people to drive positive change and brings people together from all walks of life to address community issues, build on opportunities and achieve measurable results. CFGB works in partnership with others, including area nonprofits, to improve the life of the region that includes Jefferson, Shelby, St. Clair, Blount and Walker counties. CFGB makes grants from more than 400 different funds, including the Women s Breast Health Fund, totaling over $17.1 million in The community remains at the heart of everything CFGB does, as we continue to refine our focus to achieve maximum impact with every grant-making dollar. Grant making Grants from all the funds within CFGB leverage gifts and bequests from many individuals, families and businesses to drive positive change. Since 2011, CFGB has focused grant making through a Results Framework that places intentional focus on important areas of community life. Through the Results Framework, CFGB is committed to achieving meaningful and measurable results through leadership, funding and advocacy, building on past successes with nonprofit partners and sharpening its focus to maximize the impact of limited resources. The Results Framework currently includes: Result: Strategies: Result: Strategies: Children are successful along the education pipeline Increase high quality early learning opportunities for birth to 8 year olds Decrease high school dropout rates Communities are sustainable, livable and vibrant Expand and improve public green space Further develop vibrant city center for Birmingham Improve the natural environment Expand access to arts and cultural opportunities Result: Strategies: Result: Strategies: People can live healthy lives Improve nutrition/healthy food access and increase opportunities for physical activity Improve access to care for vulnerable populations Individuals and families are economically secure Improve housing stability Increase public policy changes and direct servies that positively impact low income individuals and families 10

11 In May 2011, CFGB awarded almost $1 million toward two Results People can lead healthy lives & Children are successful along the education pipeline. Additional grants are expected in December 2011 under the other two Results. Selected 2011 grants include: Girls Inc. of Central Alabama $25,000 Preventing Adolescent Pregnancy (PAP), including partial salary support for the PAP Coordinator and Hispanic Specialist. Offered to ages attending schools in Jefferson and Shelby county, the program provides girls with skills, motivation and support to postpone sexual activity as well as to use effective protection to avoid pregnancy and sexually transmitted diseases. New Rising Star Missionary Baptist Church Community Support Corporation $14,000 Hiring additional teachers for 100+ after-school students and 250 spring/summer campers in K-9 th grade in order to reduce class size, one of several proven dropout prevention techniques. Teachers help students prepare for high school success with homework assistance and enrichment activities in reading and math, programs to improve the student s classroom behavior and a personalized instruction process. Jasper Area Family Services $5,000 Expansion of BabyTalk program to the Walker County Health Department through hiring an interpreter and purchasing bilingual books for Hispanic families. This nationally recognized program encourages and instructs parents using proven methods to establish a nurturing relationship with their children, including information about infant development and appropriate activities for family bonding. UAB Department of Nutrition Sciences EatRight Program $75,000 over 2 years EatRight Nutrition Guidance System, to help leverage partnerships in the private and public sectors and create a unique collaboration designed to help Alabamians make more informed food choices. With more than 70% of the state population overweight or obese, nutrition rating systems need improvement to help people identify healthy foods and gain credible guidance on nutrition quality as well as calorie control. KidOne Transport $50,000 over 2 years Operating costs and capital match funds to meet the increasing need for service in greater Birmingham. In 2010, KidOne served 20% more clients than in 2009, while the number of women and children unable to be served due to lack of funding increased by 45%. M-Power Ministries $50,000 over 2 years M-Power Health Center to support continued operation of the evening walk-in clinics, providing up to 4000 patients visits annually, and start-up of the PATH (Proving Access to Health Care) Clinic. The PATH Clinic will provide long-term primary care for patients dealing with chronic health problems such as diabetes and hypertension, as well as case management for patients to help them identify health care goals and become advocates for their own health. Travelers Aid Society of Birmingham $15,000 Medical Transportation program, providing free transportation to medical care for low-income elderly and disabled individuals in Jefferson County. Crisis Center $10,000 On-line resource directory of mental health resources, created in partnership with the Mental Health Goal Group of the Health Action Partnership of the Jefferson County Department of Health. This directory will provide comprehensive detailed information to all citizens. The Women s Breast Health Fund The Women s Breast Health Fund (WBHF) of the Community Foundation of Greater Birmingham (CFGB) was established in 2009 through an anonymous donor group as a Field of Interest Fund. The purpose of the WBHF is to support holistic breast cancer care for women and their loved ones throughout the five-county CFGB region. 11

12 Susan G. Komen for the Cure North Central Alabama One of the 122 domestic Susan G. Komen for the Cure Affiliates and the only Komen Affiliate in the state of Alabama, Komen North Central Alabama works to fulfill the Komen Promise throughout its 38 county service area. The affiliate was formed in 1994 by a group of concerned professionals and breast cancer survivors who were committed to saving and improving the lives of those affected by breast cancer. The 10 member board, which meets monthly, is composed of 90% female, 20% African American and 80% Caucasian. Greater Hispanic/Latino inclusion in all Affiliate activities, as well as representation on the board is a priority of the Affiliate s current strategic plan. The affiliate has 3 employees having hired its first development coordinator in July 2010, and has recently reached an organizational milestone with the opening of its first community office in January Having grown dramatically over the past five years, the affiliate s operational needs surpassed the size and functionality of our former office space. Our new home includes a multipurpose conference room, a resource library, a meeting room, offices and warehouse/storage space. It is through our educational and outreach programs and community grants that we put the Komen Promise into action each day. Current local Affiliate programs include: Speakers Bureau & Education Outreach The North Central Alabama Affiliate provides free breast health presentations through our Speakers Bureau. This core group of 50 skilled and enthusiastic volunteers spreads the word about the fight against breast cancer. The Speakers Bureau is comprised of breast cancer survivors, co-survivors, breast health advocates, and health care professionals who have received specialized training. Worship in Pink Program Worship in Pink Weekend is an opportunity for churches, mosques, synagogues and all places of worship throughout north central Alabama to spread the life-saving message of early detection and honor their communities survivors. Komen North Central Alabama provides a planning kit for this program free of charge, which includes a suggested script about breast cancer and breast health resources, information about the impact of breast cancer on various demographic groups and a listing of local breast health resources, as well as packets of breast health information for the congregation. Organizations are encouraged to make the day or weekend a celebration of survivors and co-survivors. Some organizations host a special luncheon for survivors, encourage the congregation to wear pink, or invite survivors to speak about their experiences. Lunch & Learn Series Lunch and Learn seminars are informational health programs specially designed by Susan G. Komen for the Cure North Central Alabama. This is one way we bring breast health information, hope and healing to our community. Lunch and Learn programs are free of charge and open to the public topics included: Fertility and Cancer by Karen Meneses, PhD, Surviving Anti-Hormonal Breast Cancer Therapy by Madeline Harris, RN, Breast Cancer Legacy Documentary viewing and discussion, Chemo-Brain by Elizabeth Kvale, MD,, Triple Negative Breast Cancer, Andres Forero, MD and Cancer Metastasis, Dan Welch, PhD. Advocates in Science (AIS) A small but passionate and energetic group of Komen volunteers are involved in research advocacy, taking advantage of our geographic proximity to a National Cancer Institute (NCI)-designated Comprehensive Cancer Center at the University of Alabama at Birmingham. AIS members serve as patient advocates on the Breast Specialized Programs of Research Excellence (SPORE) grant, the Breast Cancer and the Environment Program Grant from National Institute of Environmental Health Sciences (NIEHS), and on the Komen-funded Promise Grant. They have also served as research advocate reviewers in peer review for Komen, the Lance Armstrong Foundation, Department of Defense Breast Cancer Program, and the National Cancer Institute. With the new emphasis from Komen headquarters on promoting collaborations between affiliates and researchers, this group, lead by Dr. Beverly Laird (a member of the AIS-Steering Committee) works to develop our volunteer base of research advocates, recruiting and offering initial training to these volunteers. 12

13 Public Policy Advocacy Susan G. Komen for the Cure has a long and rich history in public policy advocacy that spans more than 20 years. We believe that scientific progress must be complemented by sound public policy. In this regard, Susan G. Komen for the Cure works to influence public policy-makers at the federal, state and local levels to increase public investment in quality breast health and breast cancer care. Local advocacy efforts have primarily focused on the importance of state funding for the Alabama Breast and Cervical Cancer Early Detection Program (ABCCEDP). Because of the hard work of the dozens of advocates that rallied with us on the steps of the State House and the hundreds of s sent through Komen s Advocacy Alliance, the Breast and Cervical Cancer Early Detection Program was allocated $316,800 as part of the Alabama general fund budget FY It is noteworthy that in , Komen North Central Alabama contributed $350,000 to the ABCCEDP, $33,200 more than the State of Alabama has contributed to this program. The current capacity of ABCCEDP has been limited by under-funding and the increased need for breast health services for low-income/uninsured women in our area. These needs have been exacerbated by a crippled economy (with Alabama having a 15.9% state poverty rate, compared to 13.2% for the U.S.) and a state unemployment rate of 9.1%. As an example, from April to November 2010, the ABCCEDP served 10,000 women, the number of women ordinarily served during an entire year. All program appropriations have been depleted because of this unprecedented demand for services. To avoid completely suspending the program, The North Central Alabama Susan G. Komen for the Cure and The Joy to Life Foundation (a nonprofit organization serving the southern half of the state) were asked to increase funding for this program FY to ensure that this life-saving program could stay open. Komen North Central Alabama granted $450,000 to the ABCCEDP FY FY Grants total $627, (the affiliate s largest funded community grants slate to date) and includes: ABCCEDP Alabama Dept Health $450,000 The Breast and Cervical Cancer Early Detection Program provides qualified women with breast and cervical cancer screening at no cost. Women who are screened and diagnosed through this program and diagnosed with breast and/or cervical cancer may be eligible for treatment through Medicaid. UAB K-CHAs Deep South Network for Cancer Control $50,000 Program for retention of community health advisor workforce, helps women who have been educated to disseminate knowledge in Hale, Perry, Greene, Sumter and Jefferson County ACS Patient financial and social support (Hope Lodge) $40,000 Grant for the continued implementation and expansion of patient support activities, providing residents with comprehensive support during treatment and after. WEBHERS (Score, Inc) Greene County $1,919 This grassroots organization will target African American women ages 40+ and educate them about the importance of early detection. Sisters Sharing and Caring, Woman to Woman, Inc. $3,000 This program will educate women in Greene County about early detection and create a support group for survivors. UAB Sowing the Seeds of Health: Latina Lunches $38,794 This program proposes to continue promoting breast cancer health education and screening to Latina immigrants through and existing successful program that has already reached over 1,700 Latina immigrants in Jefferson, Shelby, Marshall, Limestone, Madison, Tuscaloosa, and Blount Counties. Russell Hill Cancer Education Program $23,677 Based in Huntsville, this program will focus on outreach to rural women for breast cancer education, run by genetic counselor, who will train community members to disseminate information about breast cancer risk factors and hold periodic seminars. UAB School of Nursing Reach Out to Breast Cancer Survivors Program $20,000 The overall goal of this program is to determine the needs of rural breast cancer survivors and Latina breast cancer survivors and deliver education and support services. 13

14 Demographics of Service Area/Region The CFGB and the WBHF serve a 5 county region, which includes Jefferson, Shelby Walker, Blount and St. Clair Counties. The North Central Alabama Affiliate serves 38 counties throughout north central Alabama, geographically comprising more than half the State with approximately 2/3 of the total population of Alabama and includes the counties of Bibb, Blount, Calhoun, Chambers, Cherokee, Chilton, Clay, Cleburne, Colbert, Coosa, Cullman, DeKalb, Etowah, Fayette, Franklin, Greene, Hale, Jackson, Jefferson, Lamar, Lauderdale, Lawrence, Limestone, Madison, Marion, Marshall, Morgan, Perry, Pickens, Randolph, Shelby, St. Clair, Sumter, Talladega, Tallapoosa, Tuscaloosa, Walker, and Winston. Walker Jefferson Blount Shelby St. Clair WBHF OF THE CFGB SERVICE AREA Population demographic information shows that the north central region of Alabama is predominately white (72.1%), female (51%) and 35 to 54 years of age (27.9%). 76% have a High School degree or higher and the average household income is $57,585 (20% below the U.S. national average, Thomson- Reuters 2010). The total female population for the 38 counties that comprise the North Central Alabama service area is 1,505,809, with over 40% of living in the seven counties of the Birmingham Metropolitan Area (Jefferson, Tuscaloosa, Walker, Blount, St. Clair, Shelby and Bibb counties). SUSAN G. KOMEN FOR THE CURE NORTH CENTRAL ALABAMA AREA 14

15 10.9% of the female population in the area is without health insurance, with six of the 38 counties having an uninsured female population between 19.8 and 33.3% (<1 standard deviation above the mean of 15.1%). Great disparities exist within our service area, which includes some of the most populated, highest income counties and some of the least populated, lowest income counties, both rural and urban. UNINSURED FEMALES, AGES Poverty levels in our area range widely from county to county, from a low of 4.9% in Shelby County to a high of 31.4% in Sumter County. FAMILIES WITH INCOME BELOW POVERTY LEVEL 11.1% of the population in this area has a reported family income below the poverty level ($21,954 for a family of four, 2010 U.S. Census Bureau), with five counties having between 20.3 and 31.4% of families with income below the poverty level. 15

16 Communities of Interest Of particular note are five counties in the southwest corner (SWC) of the region: Pickens, Sumter, Greene, Hale and Perry counties. These counties have the highest percentage of uninsured females, the highest percentage of families with income below poverty level, the highest percentage of women age 40 and up who have not had a mammogram in the past twelve months and the highest percentage of late stage diagnosis (stages III & IV). In addition, Greene County also has a mortality rate that is nearly twice as high as that for other counties in the area. SWC counties also have the highest percentage of African American/Black residents ranging from 42.7% African American/Black in Pickens County to 77.6% African American/Black in Greene County. These counties have among the lowest literacy rates in the area, according to the U.S. Department of Education, Institute of Education Sciences, National Center for Education Statistics, 2003 National Assessment of Adult Literacy. Additionally, according to the Pew Research Center s analysis of U.S. Census information, Alabama s Hispanic population grew an estimated 145% between 2000 and 2010, the second highest percentage growth in the nation. Eight of the Ten Alabama Cities with the highest percentage growth of Hispanic residents are within the North Central Alabama service area and seven of these cities are located within the Birmingham Metro Area (Jefferson and Shelby Counties). Other areas of note include Shelby County, which has the youngest age for prevalence of breast cancer at years of age (< 3 standard deviations below the service area mean of 59.5). Shelby County also has the highest median family income and lowest rate of families below the poverty level of The Birmingham News, , State s Hispanic growth 2 nd in U.S. by Jeremy Gray the region. Cherokee County, located on the north east Georgia boarder has both the highest female breast cancer incidence rate and the lowest death rate in our service area. The demographic makeup of Cherokee County is predominately white (91%) with an average family income below the median and a higher than average percentage of families with income below the poverty level. To ensure efficient and effective alignment of programs, support activities and community grant funding toward the same goal, a systematic review or profile of the state of breast cancer in our area was conducted through collaboration between the Women s Breast Health Fund and Susan G. Komen for the Cure North Central Alabama. This Community Assessment helps us understand the statistical reality of breast cancer in Alabama and serves to identify the program and service gaps, needs and barriers that exist. This information helps us pinpoint where efforts will have the most impact, to ensure the most effective and targeted use of resources. 16

17 The 2011 Community Assessment focuses primarily on two community clusters within our service area: 1) the Birmingham Metropolitan Area (BMA) of Jefferson, Tuscaloosa, Bibb, Walker, Blount, St. Clair and Shelby counties and 2) the south west community cluster (SWC) of Pickens, Sumter, Greene, Hale and Perry counties (see Map of SWC on page 16). Birmingham Metropolitan Area (BMA) The BMA cluster was chosen for in-depth analysis because it includes the most densely populated counties in our area, includes statistical and demographic variety among its counties, representative of the region as a whole. The SWC cluster was chosen because of the great socio-economic and health disparities within its counties, as well as the demographic differences to the north central Alabama area as a whole. It is also felt that both clusters represent areas of great need and areas in which there may also be great impact. Breast Cancer Impact in the Area Methodology Statistical information regarding demographics, breast cancer incidence and mortality data were obtained from Thomson Reuters 2010, Alabama Department of Public Health (2010), the American Cancer Society (2009, 2010) and the Centers for Disease Control and Prevention (2008, 2009 Behavioral Risk Factor Surveillance System Survey Data). Unless otherwise stated, all statistical references in this document are attributed to Thomson Reuters REASONS FOR NOT HAVING AN ANNUAL MAMMOGRAM Breast cancer statistics are startling; one in eight women in the U.S. will be diagnosed with breast cancer in her lifetime; 209,060 new cases of breast cancer and 40,230 breast cancer related deaths were estimated in the U.S. in 2010; and 3,450 new cases of breast cancer and 690 deaths were estimated for Alabama in 2010 (American Cancer Society, 2010). The need for breast cancer education, screening and treatment is immense; nearly 40% of women in Alabama ages 40 and older report not having a mammogram in the past twelve months. The diagram above illustrates the most common reasons women give when explaining why they have not had a mammogram in the past year. Even more startling is the fact that only 8,829 or 17% of the 50,607 women eligible for the ABCCEDP were screened in 2010 (Alabama Department of Public Health). INCIDENCE RATE PER 100K To better understand the state of breast cancer in our area, we looked closely at incidence rates, stage of diagnosis statistics, mortality rates and death ratios. We took a sampling of our two target areas to use as comparison. Breast Cancer Incidence Breast cancer incidence is the number of people newly diagnosed with breast cancer in a given year. The Breast cancer incidence rate for an area is calculated by dividing the number of new cases during a given period of time by the number of people known to be at risk. For this community profile we took a sampling of counties from our two target areas and found that the incidence rate for these counties is lower than the 38 county region average. 17

18 STAGE 3 & 4 AT DIAGNOSIS (%) Stage at Diagnosis Again looking at the sample counties, we next looked at women who are diagnosed at later stages of breast cancer and found that women in Jefferson and Greene counties, the counties with the highest African American/ Black population, are more likely to be diagnosed at a later stage than women in the other sample counties. From this, we see that African American/Black women are more likely to be diagnosed at a later stage than are White women. This disparity is similar throughout the U.S. Stage 3% Stage 4% Mortality Rate Again, taking the same sample counties, we looked at mortality rates and found that in Greene County they are nearly twice as high as they are for St. Clair and Shelby counties. Other than St. Clair and Shelby Counties, the sample counties have mortality rates higher than the U.S. rate of We took our look into breast cancer mortality in our sample counties a step further and calculated the death ratio for these areas. Death ratios are calculated as Mortality:Incidence (M:I) ratios. A ratio of 1:3 (or 0.33) would mean that one out of three women who develop breast cancer die from it. Jefferson County and Greene County, the two counties with the highest African American/Black populations have the highest ratios; with nearly one-third of women diagnosed with breast cancer that die of the disease. MORTALITY PER 100K In Green & Jefferson Counties, 1/3 of women diagnosed with Breast Cancer will DIE of the disease. 18

19 DEATH RATE RATIOS Health Systems Analysis of Target Communities Methodology In order to more fully understand the health system in our target areas and how this system addresses the entire continuum of breast health care, the Community Profile Team utilized a variety of tools designed to help us understand who is doing what in our community, who works with what groups and what are some of the issues these providers and organizations face in providing breast health care in these communities. Our analysis included data and asset mapping of service providers, key organizations and county statistic data. Both community and key informant surveys were conducted, including ABCCEDP participants. In addition, site visits with area breast health/cancer providers were held and focus groups of breast cancer survivors were facilitated. An analysis of breast health service providers and facilities throughout North Central Alabama was conducted. Information regarding the number of women eligible for the Alabama Breast and Cervical Early Detection Program (ABCCEDP) and the number of women accessing and/or served by the program, along with information on and listings of Certified Mammography Facilities, Cancer Treatment Centers, Department of Public Health Offices and ABCCEDP Providers was gathered from the Alabama Department of Public Health, U.S. Department of Health and Human Services, Food and Drug Administration and the American College of Radiology (ACR). Access to Care Mapping of these resources revealed great gaps in the availability and accessibility of mammography and cancer treatment facilities in our area. Of particular note is the lack of certified mammography facilities and cancer treatment centers in the southwest county cluster (SWC). Residents these counties are faced with both a lack of breast health services and a lack of public transportation to access those services. Many are referred to screening and treatment facilities over 50 miles away. 19

20 Lack of access, in its many forms, emerges as the key Health Systems issue. Lack of access includes: 1) the lack of actual facilities and providers in rural, low income areas 2) the lack of a public transportation system linking rural and urban areas 3) the lack of financial and or support resources to help with transportation (both cost and access to reliable transportation). Knowing this, we can work with partners like the American Cancer Society to review and improve current transportation programs and work with State and local leaders to advocate for opening healthcare facilities in these areas and to create a truly workable public transportation system. In addition, we know that of the 50,607 women age eligible for the ABCCEDP in our area, only 8,829 or 17% were screened in 2010 (Alabama Department of Public Health). We believe this low number to have many factors, not the least of which are a lack of access, lack of awareness and the lack of financial resources for and capacity of the ABCCEDP. The lack of access and awareness can be more readily addressed through increased greater collaboration with community partners. Mammogram availability was the most frequent response to the Key Informant Survey question What do you think are the most important breast health and breast cancer issues to advocate for? with 79% of respondents. Increasing funding for the ABCCEDP and building the capacity of the program so that the needs of eligible women in our State are met, requires a true system change. Deep commitment by the State of Alabama (heretofore not given) and a comprehensive, systematic plan to build program infrastructure is needed to make the program successful and ensure funding necessary for a full capacity program. Albeit a lofty, politically and economically difficult goal, it is not unattainable. Organizations like ours can take a lead in this effort through increased, targeted advocacy and public policy initiatives. Political districts in Alabama correlate with the statistic and demographic information collected for this community profile which will be a useful tool in working with our elected officials. In addition, finding alternative avenues for screening, with the support of the ABCCEDP/Medicaid program for additional diagnostic services and breast cancer treatment should be explored as a way to effective stretch available funding. Community Assets Further analysis of our Health System was gained through surveys of Key Informants (Appendix A). Seventyone Key Informants were selected by committee members, board members and community partner recommendations. Each Key Informant was contacted prior to receipt of the survey and asked for their participation. Sixty-six responded to the participation request. All but one Key informant received the Key Informant Survey via the on-line survey provider Survey Monkey and were told that they would have a follow up interview by an identified Community Profile Team Member. 20