COMMUNITY PROFILE REPORT 2010 Florida Suncoast Affiliate of Susan G. Komen for the Cure

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1 COMMUNITY PROFILE REPORT 2010 Florida Suncoast Affiliate of Susan G. Komen for the Cure 2011

2 Disclaimer: The information in this Community Profile Report is based on the work of Florida Suncoast 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 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 Acknowledgements We would like to extend a profound thank you to the organizations and community members who assisted with this effort. Florida Suncoast Community Profile team members: Susan Brown Vice President, Board of Directors Florida Suncoast Affiliate Patricia Boswell Community Profile Intern University of South Florida Lauren Groves Community Outreach Coordinator Florida Suncoast Affiliate John Kiluk, M.D. Education Chair, Board of Directors Florida Suncoast Affiliate A special thank you to the following contributing partners: Barry Fraser Surveillance Manager, Florida Breast and Cervical Cancer Early Detection Program Jan Chulock Manager, Manatee/Sarasota County Florida Breast and Cervical Cancer Early Detection Program and Manatee Mammography Voucher Program Christina Vongsyprasom Manager, Pinellas County Florida Breast and Cervical Cancer Early Detection Program Sherrl Fry Manager, Pinellas Mammography Voucher Program Billie Pryce Manager, Pasco County Florida Breast and Cervical Cancer Early Detection Program and Healthy Women Today Eva Larkin Manager, Think Pink, We Care of Polk Janet Pindral Manager, Project TOUCH, St. Joseph s Women s Hospital Elissa Clayton Manager, Breast Health Education, Screening & Diagnostic Services for Uninsured Women, Moffitt Cancer Center 3

4 Table of Contents Executive Summary... 4 Introduction... 5 Statistics and Demographic Review... 5 Health Systems Analysis... 6 Qualitative Data Overview... 6 Conclusions... 7 Introduction... 9 Affiliate History... 9 Organizational Structure... 9 Description of Service Area Purpose of the Report Breast Cancer Impact in Affiliate Service Area Methodology Overview of the Affiliate Service Area Communities of Interest Conclusions Health Systems Analysis of Target Communities Overview of Continuum of Care Methodology Overview of Community Assets Legislative Issues in Target Communities Key Informant Findings Conclusions Breast Cancer Perspectives in the Target Methodology Review of Qualitative Findings Conclusions Conclusions: What We Learned, What We Will Do Review of the Findings Conclusions Action Plan

5 Executive Summary Introduction Nancy G. Brinker promised her dying sister, Susan G. Komen, she would do everything in her power to end breast cancer forever. In 1982 that promise became Susan G. Komen for the Cure, which is the world s largest breast cancer organization and the largest source of nonprofit funds dedicated to the fight against breast cancer with more than $1.3 billion invested to date. Through more than 120 Affiliates world-wide, Komen addresses the unmet health needs in local communities in order to close the gaps in health care. Up to 75 percent of funds raised by Affiliates are returned to their local communities and the remaining 25 percent goes to the national Susan G. Komen for the Cure Research and Awards program. For more information about Komen for the Cure, breast health or breast cancer visit or call GO KOMEN. Florida Suncoast Affiliate of Susan G. Komen for the Cure was founded in 1999 and now serves Hillsborough, Manatee, Pasco, Pinellas, Polk and Sarasota counties (the Service Area. ). To date, Florida Suncoast Affiliate has raised over $9 million through various fundraising events such as the Susan G. Komen Race for the Cure held each October in St. Petersburg, the annual Komen Lunch for the Cure in Sarasota and the Pink Tie Gala in Hillsborough County. The Affiliate grants over $1 million annually for screening programs (clinical breast exams, screening mammography and diagnostic evaluations) for uninsured women and breast health education programs. In addition, the Affiliate works to increase access to screening and treatment after a diagnosis for uninsured women throughout the Service Area. For more information about the Affiliate visit or call The Affiliate embraces 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. To meet this promise, the Affiliate relies on the information obtained through the biennial Community Profile process. The Community Profile is an assessment of the state of breast health in the Affiliate Service Area and will be used by the Affiliate to guide it and to assure its mission and non-mission work is targeted and non-duplicative. Statistics and Demographic Review Data on population, socio-demographic variables, mammography usage, breast cancer incidence and breast cancer mortality were complied for the Service Area and compared to national, state and county data where available. Primary data sources were Thomson Reuters 2009, Florida CHARTS, the 2009 United States Census Bureau, the National Women Law Group and National Cancer Institute (NCI) State Cancer profiles. Three areas of concern were identified from the statistical analysis: the low mammography utilization in the Service Area, the high percentage of uninsured women in the Service Area and the high rate of late stage diagnosis among Black women. GIS maps were created for all six 5

6 counties identifying zip codes areas with more than 26.5 percent uninsured populations, zip codes with 10 percent or higher Black populations and zip codes with five percent or higher rates of stage IV diagnosis. Four target communities were selected based on which zip codes had the highest percentage of individuals uninsured and highest percentage of late stage diagnosis. These four areas are predominantly Black. They are: Zip Code in Hillsborough County (Ybor City), Zip Code in Pinellas County (South St. Petersburg), Zip Code in Polk County (Lakeland) and Zip Code in Sarasota County (Newtown). Diagram 1: Stage at diagnosis in Service Area: White Women vs. African American Women Health Systems Analysis Information on available services in the target communities was obtained from the following websites: Florida Breast and Cervical Cancer Early Detection Program (FBCCEDP), Florida Comprehensive Cancer Control Program, the Bureau of Chronic Disease Prevention and Health Promotion, Tampa Bay Community Cancer Network, Florida's State Primary Care Office and related links. Further information on the assets available and gaps existing within each community was obtained through interviews with the directors of the three FBCCEDP programs 6

7 serving the target communities and representatives of the six Affiliate grantees responsible for large scale screening programs in the target communities. Available programs are somewhat effective in meeting the needs for breast health care and treatment of women in the target communities; however, the demand for services far exceeds the financial resources available. In order to improve access to care for women, screening programs require increased funding from public or private sources as well as more and better partnerships with health care providers and facilities. In addition, women in the target communities need to receive clear messaging regarding the importance of being screened annually beginning at age 40 through a program that assures access to follow up diagnostic screenings and treatment, if necessary. Qualitative Data Overview To gain a better understanding of the specific issues facing the women living in these four communities, focus groups were conducted in each of the four communities. The focus groups were designed to solicit information on barriers to seeking screening, follow up diagnostic screenings and treatment and on trustworthy partners to help increase mammography utilization among target populations. A total of 33 women participated. The top three perceived barriers that keep women from getting routine breast health care (including mammograms and clinical breast exams) and from being diagnosed and treated are: Lack of financial resources and/or insurance, Fear of the unknown and fear of being diagnosed with cancer, and Lack of basic breast health knowledge. Although there are screening programs available for uninsured women, many are not aware of them. Suggestions for driving women into existing programs included increased participation by the various programs in community sponsored events in the target communities and increased communication about the availability of screening. Educational messaging must go beyond the simple get your mammogram. Women know they should, but they are afraid. Messaging must focus on reducing those fears emphasizing that that early detection is key to increasing the chances of surviving breast cancer and getting screened regularly for breast cancer is the best defense for women to lower their risk of dying from the disease. The Affiliate and the Affiliate s partners need to work with Church leaders and key professionals in community organizations to get the word out to women in these communities about breast health and available services. Conclusions Based on these findings, the following were agreed to be the Affiliate s priorities and action plan for the next biennium: 7

8 Priority One Assure access to the full continuum of care for uninsured women in each county in the Service Area in order to reduce mortality rate in the Service Area: 1. In the grant cycles continue to fund and/or work to develop additional screening programs for uninsured women in each county in the Service Area that: a. Provide follow-up diagnostic screening in the event an abnormality is detected; b. Include access to treatment; and c. Include evidence-based components designed to assure rescreening of at least 60 percent of previous patients. 2. Continue funding and/or work to develop screening programs with multiple screening and treatment locations spread throughout each county with particular attention to the target zip codes. 3. Help Affiliate grantees develop more and better partnerships with health care providers, large facilities and local clinics in order to increase the number of women they can serve. 4. Collaborate with other Florida Affiliates and the Breast and Cervical Cancer Early Detection Program providers throughout the state to advocate for improved public services for the poorest individuals of the community such as better County Indigent Plans and a change in Florida law to enable uninsured and underinsured women to obtain treatment for breast cancer regardless of screening provider (specifically including a change in the Florida Breast and Cervical Cancer Treatment Act) and inclusion of oral chemotherapy medications under required insurance coverage. Priority Two Increase mammography utilization among populations in which five percent or more are initially diagnosed with stage III or IV cancers in order to reduce late stage diagnosis in these communities. 1. Require screening programs that service Hillsborough, Pinellas, Polk or Sarasota Counties to include in their grant requests for the grant cycles information on: a. The number of mammograms both initial and rescreening provided during each of the past two years to women residing in the target zip codes; and b. Specific goals for increasing the number of mammograms both initial and rescreening to be provided to women residing in the target zip codes during the new grant cycle. 2. Promote culturally-appropriate evidence-based education programs designed to increase mammography utilization among target populations by addressing factors that contribute to reduced screening, particularly: a. The lack of understanding of the links between regular screenings, early detection and survival; and b. Fears and myths among minority women particularly Black women. 3. Work with grantees to educate primary care physicians about the need for increased mammography screening among the target populations. 8

9 4. Create a Black advisory board to help the Affiliate assure it is reaching the target community with an appropriate message. Priority Three Implement a strategic marketing and communications plan during 2011 that will reinforce our education messaging, reach target populations and raise awareness about Affiliate-wide programs and objectives in order to increase healthy lifestyle choices and drive individuals into the continuum of care: 1. Focus education messaging on addressing the links between regular screenings, early detection and survival in order to encourage women to seek routine breast health care, diagnosis and treatment of breast cancer. 2. Develop materials for grantees and Affiliate education programs listing all screening programs funded by the Affiliate and all other available screening programs for uninsured women that provide follow-up diagnostic screening and a treatment option. 3. Reach target populations by using culturally appropriate methods of communication based on demographics and research, including: a. Traditional Media (radio, TV, print, outdoor); b. New Media (electronic communications, including: , Web site, Facebook, YouTube, Twitter); and c. Church leaders and key professionals in community organizations. 4. Integrate and coordinate messaging across all mediums and audience segments to share a common look, sound, and feel. 9

10 Introduction Affiliate History The Affiliate was founded in 1999 by a dedicated group of individuals led by Dr. Barbara Hall (Bourland). The first Komen Suncoast Race for the Cure raised money for one small grant in Pinellas County. Since then: The annual Race in St. Petersburg has grown from 3,300 participants in 1999 to over 10,000 participants in The Affiliate s Service Area has expanded to six-counties: Hillsborough, Manatee, Pasco, Pinellas, Polk and Sarasota. To date, the Affiliate has raised over $9 million through various fundraising events such as the Race held each October in St. Petersburg, the annual Lunch for the Cure in Sarasota and the Pink Tie Gala held in Hillsborough County. In 2012, The Affiliate will add a Race in Polk County. In addition to the funds raised through these events, the Affiliate benefits from the Susan G. Komen 3-Day for the Cure, multiple third party events and National Partner events. Up to 75 percent of funds raised are returned to the community through grants to nonprofit organizations that are fighting to change the impact of breast cancer upon the women and families of the Florida Suncoast community. With the Race and its other fundraising activities, the Affiliate is now able to grant over $1 million annually for non-duplicative breast health programs providing breast health education, clinical breast exams, screening mammography and diagnostic evaluations for the underserved. The remaining 25 percent of funds raised goes to the national Susan G. Komen for the Cure Research and Awards program. Organizational Structure The Affiliate is a nonprofit corporation. The business and affairs of the Affiliate are managed under the direction of its Board of Directors. The number of directors is currently fixed at 15. The Board of Directors has four elected officers: President, Vice President, Secretary and Treasurer. The Affiliate currently has three staff positions. The Executive Director reports to the President of the Board of Directors and the Marketing and Communications Manger and Grants and Mission Outreach Coordinator report to the Executive Director. All remaining key positions within the Affiliate are filled by volunteers. The key volunteers include the Race, Lunch for the Cure and Pink Tie Gala chairs and committee members. Key volunteers also help the Education, Grants and Volunteer committees. 10

11 Description of Service Area The Affiliate currently serves Hillsborough, Manatee, Pasco, Pinellas, Polk and Sarasota Counties in the State of Florida: Hillsborough County (pink) is the second largest county in the Service Area, covering a total area of 1,266 square miles. It includes the city of Tampa and is the most populous county in the Service Area with a population of 1,222,950. More than 950 people reside per square mile. Pasco County (beige) has a total area of 742 square miles and a total population of 464,701. Pasco County contains six municipalities: New Port Richey, Port Richey, San Antonio, St. Leo, Zephyrhills and Dade City, the county seat. Pinellas County (dark green) has a total area of 608 square miles. It includes the city of St. Petersburg and is the most densely populated county in the state of Florida with a total population of 929,312. Polk County (blue) is the largest and most rural county in the Service Area. Covering a total area of 2,010 square miles, it serves as a bedroom community to Hillsborough County on the west and the Orlando area (Orange and Seminole counties) on the east. Its largest city is Lakeland. It is the least densely populated county in the Service Area with a population 605,

12 Manatee County (light green) covers a total area of 893 square miles and has a population of 324,512. Manatee County has the smallest population in the Service Area. Its largest city is Bradenton. Sarasota County (purple) covers a total area of 725 square miles and has a population of 390,517. Tourism, agriculture and light industry are the county s principal industries. Four municipalities lie within the area served: the cities of Sarasota, Venice and North Port as well as the town of Long Boat Key. Purpose of Report The Affiliate embraces 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. To meet this promise, the Affiliate relies on the information obtained through the biennial Community Profile process to guide it in the work it must accomplish in its communities. A quality Community Profile guarantees mission and non-mission work is targeted and nonduplicative. It helps the Affiliate to be a good steward to be accountable for its performance, individually and collectively. This Community Profile is an assessment of the state of breast cancer in the six county Service Area and will be used to establish granting priorities and education needs for the next two years. It will allow the Affiliate to: Drive inclusion efforts in the Florida Suncoast community; Establish focused granting priorities; Establish focused education needs; Strengthen our message to our sponsors and community partners; Drive public policy efforts; Establish directions of marketing and outreach; and Align our strategic and operational plans. The 2009 Community Profile set three priorities for the Service Area as a whole: to fund screening programs for uninsured women, to increase access to follow up treatment and to provide culturally appropriate education campaigns. For the 2011 Community Profile, the Affiliate will use the data collected to strengthen and build on the findings of the 2009 Community Profile with a view to re-evaluating our previously identified priorities and focusing in greater detail on target populations and areas. In particular, we want to focus on the gaps and barriers in our Service Area that may delay or prevent women from accessing screening, returning for regular rescreenings and, when necessary, continuing through diagnosis and treatment (the continuum of care). 12

13 Breast Cancer Impact in Affiliate Service Area Methodology Demographic data from the Service Area was obtained from Thomson Reuters Unemployment rates were obtained from the United States Department of Labor Bureau of Labor Statistics release dated 12/17/2010. Median Income and United States and Florida demographic data were obtained from the 2009 United States Census Bureau. Insurance coverage data in the Service Area was also obtained from Thomson Reuters 2009 while the insurance coverage data for the state and country were obtained from the 2009 United States Census Bureau. Data regarding disparities in coverage by race and ethnicity is from the National Women Law Group. Mammography data came from Thomson Reuters 2009 for the Service Area and Florida CHARTS for the state of Florida. Most incidence data was obtained from Thomson Reuters Incidence data specific to Black women was obtained from the 2009 United States Census Bureau. The majority of mortality data was obtained from National Cancer Institute (NCI) State Cancer profiles and Thomson Reuters Data on population, socio-demographic variables, mammography usage, breast cancer incidence and breast cancer mortality were complied for the Service Area and compared to national, state and county data where available. Attempts were made to ensure the most recent data is reported in order to create the most accurate estimates possible. Target communities were selected based on data that showed important differences or trends. GIS maps for each county were created by Barry Fraser, Surveillance Manger for the Department of Florida Breast and Cervical Cancer Early Detection Program. Overview of the Affiliate Service Area Table 1. Population estimates for the US, Florida and Affiliate counties by race and ethnicity. No. White % Black % American Indian % Asian/Pac Islander % Hispanic or Latino % United States 307,006, Florida 18,537, Service Area 3,937, Hillsborough 1,222, Pinellas 929, Polk 605, Pasco 464, Manatee 324, Sarasota 390, Thomson Reuters

14 The population of the Service Area is 3,937,373, of which 51.2 percent are women (Thomson Reuters 2009). As Table 1 illustrates, racial and ethnic distribution varies significantly between the counties in the Service Areas and, when examined at the county level, differs widely from US and state ratios. Although Table 1 includes information for both men and women, it is of note that the proportions remain when stratified by gender. Florida has been especially hard hit by the recent recession and its recovery is lagging behind much of the nation: As of November 2010, the state s unemployment rate was 12 percent, compared to the US rate of 9.8 percent (United States Department of Labor Bureau of Labor Statistics). The average median household income of the Service Area is $47,564 compared to US median household income of $52, 029 and statewide median income of $47,802 (United States Census Bureau). In the Service Area, 25.9 percent of females ages are uninsured (Thomson Reuters 2009), which is significantly higher than the rates for women of all ages in Florida (20 percent) and in the US (estimated at percent) (United States Census Bureau). Polk and Hillsborough County have the highest rates of uninsured females at 29 percent and 27.8 percent, respectively; followed closely by Pinellas County with 26.1 percent of women being uninsured (Thomson Reuters 2009). Further, according to the National Women Law Group, the disparities in coverage vary by race and ethnicity with Black females in Florida at 32 percent, topped only by Hispanic females at 37 percent. Mammography utilization in the Service Area is low. The data shows that 35.1 percent of eligible women over 40 in Florida have not had a mammogram over a 12 month period (Florida CHARTS). According to Reuters and Thompson data (see Table 2), the percentage of eligible women over 40 in the Service Area who have not had a mammogram in the past 12 months is higher than the state average. Table 2. Mammography utilization in women over 40 per year. County 2009 Female Population 40+ % No Mammo Last 12 Months % Chose Not To % Didn't Have Time % Didn't Need % Have Scheduled % Other Reasons Pinellas 291, % 5.7% 10.7% 2.4% 3.5% 13.8% Hillsborough 290, % 5.4% 10.2% 2.4% 3.4% 14.8% Polk 149, % 6.2% 9.6% 3.2% 4.0% 14.5% Sarasota 131, % 5.7% 8.6% 3.2% 3.7% 12.1% Pasco 130, % 6.3% 9.2% 3.3% 4.0% 14.4% Manatee 92, % 5.7% 8.8% 3.0% 3.6% 13.4% Service Area 1,085, % 5.7% 9.8% 2.8% 3.6% 14.0% Thomson Reuters

15 While this may be due to the high percentage of uninsured women, it should be noted that mammograms may not be available to additional women who have insurance because Florida does not require private insurance companies to cover annual mammograms for women over 40. Breast cancer incidence and mortality rates for the Service Area as a whole do not differ significantly from US and state averages. The incidence of breast cancer in the Service Area is estimated at per 100,000 women, slightly higher than the Florida estimate of and significantly lower than the US rate of (Thomson Reuters 2009). Breast cancer mortality in the Service Area is (per 100,000), which is somewhat higher than the state average for women at but below the US rate (NCI State Cancer Profile). The Community Profile team was struck by the significant disparities that appear in the data when racial/ethnic factors and stage of diagnosis are reviewed. As shown in Table 3 below, among Black women, fewer cancers are found at stage I than are found among other ethnicities and they are nearly twice as likely to be diagnosed with stage III and IV cancers as their white counterparts in the same region. While data for the Service Area was consistent with US data as a whole, the team decided to look more closely at neighborhoods with high late stage diagnosis. 15

16 Table 3. Incidence rate in the service area counties by ethnicity and stage. Ethnicity County State 2009 Female Per 100K Pop Rate Stage I % Stage II % Stage III % Stage IV % White Total % 26.00% 3.30% 4.30% Sarasota FL % 25.00% 3.30% 4.40% Pinellas FL % 25.80% 3.30% 4.30% Polk FL % 26.10% 3.30% 4.30% Manatee FL % 25.60% 3.30% 4.40% Pasco FL % 25.80% 3.30% 4.30% Hillsborough FL % 27.20% 3.30% 4.20% FL FL US Other Total % 29.80% 3.40% 4.20% Pinellas FL % 29.30% 3.40% 4.20% Sarasota FL % 29.70% 3.40% 4.20% Polk FL % 30.40% 3.40% 4.20% Hillsborough FL % 29.70% 3.40% 4.20% Manatee FL % 30.70% 3.40% 4.20% Pasco FL % 29.40% 3.30% 4.20% FL US Black Total % 31.80% 5.90% 8.00% Service Area Total Sarasota FL % 31.10% 5.80% 8.10% Polk FL % 31.50% 5.90% 8.00% Pinellas FL % 31.70% 5.90% 8.00% Manatee FL % 31.80% 5.90% 8.00% Hillsborough FL % 32.10% 5.90% 8.00% Pasco FL % 32.00% 5.90% 8.00% FL US % 26.50% 3.40% 4.50% Florida US Thompson Reuters

17 Communities of Interest/Conclusions Three areas of concern were identified from the statistical analysis: the low mammography utilization in the Service Area, the high percentage of uninsured women in the Service Area and the high rate of late stage diagnosis among Black women. GIS maps were created for all six counties identifying zip codes with more than 26.5 percent uninsured populations, zip codes with 10 percent or higher Black populations and zip codes with five percent or higher rates of stage IV diagnosis. Target communities were selected based on which zip codes had the highest percentage of individuals uninsured and highest percentage of late stage diagnosis. These four target communities are also predominantly Black communities. They are: Zip Code 33605, Hillsborough County: 29.4 percent of the 2,017,315 women in the Service Area reside in Hillsborough County, which also has the most diverse population with the greatest proportion of Black and Hispanic female residents. HRSA Medically Underserved Areas (MUA) are found in Hillsborough and are located in predominately urban and rural farm-worker areas near Tampa, Plant City and southern Hillsborough County (Wimauma, Ruskin), respectively (HRSA Geospatial Data Warehouse). Zip code is located in an area of Hillsborough County known as Ybor City. It has an uninsured rate of 69.2 percent and the highest rate of stage IV diagnosis in Hillsborough County. In this zip code, there is a high Black population (Thomson Reuters 2009). Zip Code 33705, Pinellas County: Pinellas is the second largest county by population of women in the Service Area (22.9 percent). Like Hillsborough, it is designated a HRSA Medically Underserved Area in certain parts of the St. Petersburg, Gulfport and Clearwater regions. Zip code is in south St. Petersburg, the largest city in Pinellas County with one of the lowest income levels. This area was chosen due to its high percentage of uninsured (41.4 percent) and a rate of 6.1 percent stage IV diagnosis. This area is also a highly populated Black community (Thomson Reuters 2009). Zip Code 33815, Polk County: Polk County is the third largest county in the Service Area (where 14.6 percent of women in the Service Area reside). It has the second largest Black and Hispanic populations in the Service Area and the largest population designated as a HRSA Medically Underserved Area. Zip code is located in Lakeland, the largest city in Polk County and has an uninsured rate of 57.9 percent and a stage IV diagnosis rate of five percent (Thomson Reuters 2009). Zip Code 34234, Sarasota County: Sarasota has only 9.6 percent of the women in the Service Area. Two communities (Newtown and North Port) are designated as HRSA Medically Underserved Areas. Zip code is located in Newtown. This zip code has an uninsured rate of 39.6 percent and is the only zip code in Sarasota County with a stage IV diagnosis percentage over five percent. While Sarasota County has a small Black 17

18 Conclusions population (4.4 percent), the majority of this population resides in Newtown (Thomson Reuters 2009). The four target communities were selected based on which zip codes had the highest percentage of individuals uninsured and highest percentage of late stage diagnosis. Since early detection is key to increasing the chances of surviving breast cancer and getting screened regularly for breast cancer is the best way for women to lower their risk of dying from the disease, the high incidence of late stage diagnosis suggests these women are not getting regular screenings. These four target communities are predominantly Black communities signifying a health disparity. 18

19 Overview of Continuum of Care Health Systems Analysis of Target Communities The continuum of care is a tool that defines each step in breast health care and can be used to identify gaps, barriers and issues that may delay or prevent women accessing screening and continuing through the continuum: To gain a better understanding of why women living in the four target communities do not enter into the continuum of care or if they enter, why they do not continue the Community Profile team looked at the services available for the low income uninsured women in the communities and interviewed key health professionals in each community regarding assets and gaps within the community. Methodology Information on available services was obtained from the following websites: Florida Breast and Cervical Cancer Early Detection Program (FBCCEDP), Florida Comprehensive Cancer Control Program, the Bureau of Chronic Disease Prevention and Health Promotion, Tampa Bay Community Cancer Network, Florida's State Primary Care Office and related links. Further research into the assets available and gaps existing within each community was obtained through key informant interviews. These key informants were: The directors of the three FBCCEDP programs serving the target communities: 19

20 o The Manatee County Health Department Program Manager of the FBCCEDP that serves Manatee and Sarasota counties and several other counties outside of the Service Area; o The Hillsborough County Health Department Program Manager of the FBCCEDP that serves Hillsborough and Polk counties, as well as Highlands and Hardee counties outside the Service Area; and o The Pinellas County Health Department Program Manager of the FBCCEDP that serves Pinellas County. Representatives of all six Affiliate grantees responsible for large scale screening programs in the target communities: o Morton Plant Mease s Mammography Voucher Program, which serves Pinellas County; o Sarasota Memorial Hospital screening program for Sarasota County; o We Care of Polk County s Project Think Pink; o Moffitt Cancer Center, which serves Hillsborough County; o Tampa General Hospital s screening program for Hillsborough County; and o St. Joseph s Women s Hospital s screening program for Hillsborough County. Each key informant was interviewed by phone and was asked to explain the state of breast health in his/her county, describe services available for low income, uninsured individuals in the target communities and identify large areas of need within the target communities. Although all key informants and interviewees were selected because they are well regarded professionals within the local breast health community, their responses may be affected by their preferences for particular programs and their focus on the needs of only one community. Overview of Community Assets In each of the target communities there are at least two community programs -- a FBCCEDP program and an Affiliate grantee -- working together to address the needs of the community and provide women full access to the continuum of care. Through the FBCCEDP, the Centers for Disease Control and Prevention provides low-income, uninsured and underserved women access to timely breast and cervical cancer screening and diagnostic services. The program helps low-income, uninsured and underinsured women gain access to breast and cervical cancer screening and diagnostic services. To reach underserved women, the FBCCEDP supports an array of strategies, including program management, screening and diagnostic services, data management, quality assurance and quality improvement, evaluation, partnerships, professional development, and recruitment. Providers in the program work collaboratively to provide breast and cervical cancer screening, diagnostic evaluation and treatment referrals where appropriate. Like the FBCCEDP, all Affiliate grantees that are providing screening mammograms are also providing eligible clients access to the entire continuum of care. The six Affiliate grantees serving the target zip codes provide low-income, uninsured women access to breast cancer screening and diagnostic services, as well as treatment options if necessary. Each program 20

21 funded by the Affiliate has diagnostic procedures and treatment mechanisms in place for the women they screen and includes a component addressing rescreening for the previous year s clients. The available programs are somewhat effective in meeting the needs for breast health care and treatment and helping women access breast health services and remain in the continuum of care throughout Hillsborough, Pinellas, Polk and Sarasota counties, including women in the target communities. However, the managers of both the FBCCEDP and the Affiliate grantees programs reported serious problems limiting their effectiveness, including: First and foremost, the demand for services far exceeds the financial resources available. Currently, all programs report they are operating at full capacity based on the available funds. The programs also report a lack of partnerships with local physicians who do not want to partner or provide services at the cost the programs can afford to reimburse. In some of the target communities, there are also large facilities and local clinics that are not willing to partner with the programs to increase the number of women they can serve. It is also reported by program managers that there are many locations in the target communities that provide mammograms but do not provide access to the entire continuum of care and instead disqualify women from access to diagnostic and treatment options. Program managers believe there is a need to better educate residents of the target communities as to the importance of being screened through a program that assures access to the entire continuum of care. The multiple programs available in each community work together to address the needs of the community and help women enter and stay in the continuum of care. These programs also work with various large breast health facilities within their communities. That being said, all programs could work to build better partnerships and collaborate with local clinics, physicians and large facilities not currently partnering with the programs. The programs would also benefit from better partnership across county lines. Each program has an area of best practice within the program that could be shared with the other programs. If the partnership between all of these programs was increased, each program could become more efficient by implementing evidence-based best practices being used by a partnering program. Legislative Issues in Target Communities The statewide FBCCEDP currently receives federal funding sufficient to screen approximately seven percent of the eligible, at need women ages 50 to 64. Although the Affiliate has advocated at the state level in conjunction with a Florida Collaborative of Komen Affiliates (Florida Collaborative) for legislation to close the gaps in access to breast cancer treatment, no significant state funding is provided. Consequently, funding is insufficient to serve all eligible women in the target communities. 21

22 Public advocacy is recommended to be part of the Affiliate action plan for the next biennium subject to the limitations of the current financial reality. Florida, like other states, is facing severe budget deficits. On February 7, 2011, Florida Governor Rick Scott, a fiscal conservative, unveiled a budget that both reduces taxes and significantly cuts state spending. The Affiliate will continue to advocate for breast health issues in the State of Florida and at the federal level. The Affiliate will continue to integrate public policy into Affiliate events, participate in national policy campaigns, including Congressional Lobby Days to advocate for federal breast health initiatives and meaningful appropriations, and work with the Florida Collaborative, the Florida Legislature, the Florida Department of Health, and other interested stakeholders to improve access to breast cancer screening and treatment for all Floridians, regardless of whether uninsured or underinsured. Key Informant Findings According to the key informant interviews, women in all of the target communities share similar experiences when moving through the continuum of care: Insured women have full access to the continuum of care in each target community but often are unaware of what access means. Many insured patients fall out of the continuum of care even though they have the ability to remain in at all touch points. These women tend to fall out of the continuum of care due to lack of knowledge on the next steps of breast health. They lack information on diagnostic care and treatment and nobody is waiting at the facilities to assist if they do not ask for assistance. Uninsured women and women eligible for the FBCCEDP report similar experiences as well. These women have access to the full continuum of care only if they are entering the screening stage at the correct program and only if that program still has funding available. If a woman who is uninsured is screened outside of these programs, they easily lose access to diagnostic procedures and necessary treatment. Undocumented women report the same experiences as uninsured women but have an added fear of deportation if they show up in the health care system. This fear keeps many undocumented patients out of the continuum of care for their entire lifetime. Conclusions Currently all Affiliate funded and FBCCED programs are successful at keeping women in the continuum of care at the capacity of the program. In order to improve access to care for women, programs require increased funding from public or private sources. In addition, they must improve effectiveness in various areas such as building better partnerships with health care providers and facilities and becoming better educated on how to negotiate pricing with large facilities that are not current partners. Women in the target communities need to receive clear messaging regarding the importance of the continuum of care and where they can receive full access to all components of the continuum. 22

23 Breast Cancer Perspectives in the Target Communities Methodology Analysis of the statistical data and GIS maps identified four counties in the Service Area with communities having a high incidence of late stage breast cancer diagnosis. These four areas are predominantly Black communities signifying a health disparity. In addition, these four communities have a high number of uninsured residents. To gain a better understanding of the specific issues facing the women living in these four communities, focus groups were conducted in each of the four communities: In Sarasota County, 11 women participated in the focus group. All of the women were residents of the Newtown area. The largest church in the community helped recruit participants for the focus group and hosted the event. The church is in the target zip code. In Pinellas County, six women participated. All of the women were from south St. Petersburg. A key breast health navigator helped recruit the participants. The focus group was held at a public library within the target zip code. In Hillsborough County, ten women participated in the focus group. All participants were from the target zip code and included both insured and uninsured women. A local Links Inc. representative helped recruit the participants. The focus group was held in a public library within the target zip codes. In Polk County, six women participated in the focus group. All 6 women represented the rural community. A local FBCCEDP participant recruited the women for the focus group and hosted the group at her house. At the beginning of each focus group session, participants were told the purpose of the focus group in relation to the Affiliate s 2011 Community Profile assessment process, the preliminary findings, the reason why their community was selected to participate in a focus group and the role of the focus group facilitators. Participants were asked to agree on common ground rules for the group, including respecting each member and allowing all members to speak and participate in an individual manner. The same eight questions were asked of all groups. The questions were designed to solicit information on barriers to entering and staying in the continuum of care and to seek trustworthy partners to help increase mammography utilization among target populations. To analyze the focus group results, answers to the same questions were reviewed for comparable answers. If a response was repeated over and over in each focus group, it was considered a continued theme. Themes were then reviewed for similar concepts and combined if answers fell under the same concept. Review of Qualitative Findings Certain common themes emerged within and among the focus groups. 23

24 Among all respondents, the top three perceived barriers that keep women from getting routine breast health care (including mammograms and clinical breast exams) and from being diagnosed and treated are: First: Lack of financial resources and/or insurance was the most cited barrier in all focus groups. In addition, the majority of focus group participants were not aware of the screening programs serving uninsured women in their communities. Second: Fear - fear of the unknown and fear of being diagnosed with cancer. Women were informed about the need to get a mammogram but fear of death associated with breast cancer prevented women from utilizing mammography. Third: Lack of basic breast health knowledge. Although cited separately as a significant barrier to screening, lack of knowledge of the survival rate when breast cancer is detected early and how regular mammograms can save lives may be part of the fear of being diagnosed. Participants believed that good breast health education has to be taught to low income women and young women in order to make it part of their routine health care as adults. The most credible people to provide breast health information in the target communities are: First: Church leaders and community centers are the most trusted sources of information generally, including health ministries within churches. Second: Medical doctors and clinic staff providing services within the community are who women turn to for breast health information. Third: All focus groups reported media as being a trusted source of health information; however, the specific media outlet cited in each community differed. Consequently, delivery of messaging must be carefully targeted in each community. Conclusions There are a high percentage of uninsured women in the Service Area and lack of insurance is the number one perceived barrier to regular mammography screening. Although there are screening programs available for uninsured women, many are not aware of them. Suggestions for driving women into existing programs include: Program managers and grantees need to participate in community sponsored events particularly in the target communities -- to insure breast health messages and services get to the women who really need them. The Affiliate needs to communicate the availability of screening. Program managers and grantees need to identify barriers -- including transportation, socio/cultural factors and language -- that interfere with access to care. Program managers and grantees must then act to reduce barriers to cancer care and related services, coordinate care resources and improve linkages to ensure access to cancer care 24

25 for all populations. Program managers and grantees must also identify and promote cancer prevention and care services for all populations. Educational messaging must go beyond the simple get your mammogram. Women know they should, but they are afraid. Messaging must focus on reducing those fears emphasizing that that early detection is key to increasing the chances of surviving breast cancer and getting screened regularly for breast cancer is the best defense for women to lower their risk of dying from the disease. In addition, literature must meet health literacy and cultural sensitivity tests. The Affiliate and the Affiliate s partners need to work with Church leaders and key professionals in community organizations to get the word out to women in these communities about breast health and available services. Finding a local breast cancer survivor from each community to act as an Affiliate ambassador may be a key way for the Affiliate to begin infiltrating the community. The ambassador must be a ray of hope for the community and show women that a mammogram can save their life. 25

26 Review of the Findings Conclusions: What We Learned, What We Will Do A statistical and demographic analysis of the Service Area identified three areas of concern all evidencing gaps in screening and early detection: Mammography utilization in the Service Area is low -- too many women are not getting screened regularly; they never enter into the continuum of care. This is troubling because early detection is key to increasing the chances of surviving breast cancer and getting screened regularly for breast cancer is the best way for women to lower their risk of dying from the disease. There is a high percentage of uninsured women in the Service Area. There is a high rate of late stage diagnosis among Black women in the Service Area. The zip codes having the highest percentages of late stage diagnoses and the highest percentages of individuals uninsured are in predominantly Black neighborhoods. To gain a better understanding of the specific issues facing the women living in four of these neighborhoods, focus groups were conducted to solicit information on barriers to entering and continuing through the continuum of care. The top three perceived barriers identified are: Lack of financial resources and/or insurance, Fear of the unknown and fear of being diagnosed with cancer, and Lack of basic breast health knowledge. An analysis of the services available in the target communities indicates that there are Affiliate funded and FBCCEDP programs successfully offering uninsured women in the communities access to the whole continuum of care; however, many residents are not aware of them. Suggestions for driving women into existing programs include increased participation by the various screening programs in community sponsored events and increased communication about the availability of screening. In addition, Black women, in particular, need culturally-appropriate education that focuses on reducing their fears that emphasizes early detection is key to increasing the chances of surviving breast cancer and that getting screened regularly for breast cancer is the best way for women to lower their risk of dying from the disease. Currently, all Affiliate funded and FBCCED programs are successful at keeping women in the continuum of care at the capacity of the program; however, the demand for services far exceeds the resources available. All of these programs require increased funding from public or private sources to better serve the communities. In addition, they must improve effectiveness in various areas such as building better partnerships with other health care providers. Conclusions Because of Florida s high number of uninsured women, continued funding of screening programs by State and local governments and organizations like Komen remains a high priority. 26