COMMUNITY PROFILE REPORT. Susan G. Komen for the Cure Miami/Ft. Lauderdale Affiliate

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1 COMMUNITY PROFILE REPORT Susan G. Komen for the Cure Miami/Ft. Lauderdale Affiliate 20111

2 Acknowledgements The Miami/Ft. Lauderdale Affiliate of the Susan G. Komen for the Cure would like to thank the many individuals and organizations who contributed time and resources to the completion of this document. Those partners include: current and past grantees, providers and survivors who participated in focus groups and key informant interviews. Special thanks to the following people who were instrumental in the completion of this report: Data Compilation Recinda Sherman Senior Research Associate Florida Cancer Data Systems University of Miami Miller School of Medicine Geographical Information System Mapping Jonathan Kish, M.P.H. Doctoral Candidate Epidemiology and Public Health University of Miami Miller School of Medicine Community Profile Chair Stacy Cutrono, M.S. Doctoral Student Kinesiology & Sport Sciences University of Miami Community Profile Team Bobbi Meyers Executive Director Miami/Ft. Lauderdale Affiliate Susan G. Komen for the Cure Community Profile Team Andrea Orane President of the Board Miami/Ft. Lauderdale Affiliate Susan G. Komen for the Cure 2

3 Table of Contents Executive Summary Introduction...4 Demographic and Breast Cancer Statistics Health Systems Analysis Qualitative Data Conclusions Introduction Affiliate History and Background...10 Organizational Structure...10 Description of Service Area...11 Purpose of the Report...12 Demographics and Breast Cancer Statistics Data Source and Methodology Overview Characteristics of Service Area Breast Cancer Statistics Overview Target Areas of Interest Health Systems Analysis Data Source and Methodology Overview Health Systems Overview Partnerships and Opportunities Key Findings Qualitative Data: Ensuring Community Input Data Sources and Methodology Overview...29 Qualitative Data Overview Qualitative Data Key Findings Conclusions Putting the Data Together Selecting Affiliate Priorities Affiliate Action Plan References

4 Executive Summary Introduction Affiliate History and Background 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 1.9 billion invested to date. The Miami/Ft. Lauderdale Affiliate of Susan G. Komen held its first Race for the Cure in 1996 and was founded in 1999 and is dedicated to saving lives and ending breast cancer forever by advancing research, education, screening and treatment. The affiliate has grown in size from a staff of one to a staff of five people and recently expanded its service area from two counties to three with the addition of Monroe County. The Miami/Ft. Lauderdale Affiliate has raised more than $2 million in the fiscal year ending in March 2011 to support the fight against breast cancer. The affiliate funds a diverse group of outreach, educational, screening and treatment programs in collaboration with not-for-profit health care organizations, public health agencies and community groups in the tri-county service area. Purpose of the Report To fulfill our promise, the Miami/Ft. Lauderdale Affiliate relies on the biennial Community Profile. The goal of the Community Profile is to gather information about target areas in our three-county service area for the purpose of identifying needs, barriers and gaps in service. Findings from the 2011 Community Profile will be instrumental in supporting the affiliate s strategic plan, in defining specific strategies to address gaps and barriers to accessing services, and in assessing the quality and availability of breast healthcare services. This research points to future directions for affiliate grant programs, public policy initiatives, community mobilizing activities and development of strong collaborations and partnerships throughout the service area. The Community Profile includes an overview of demographic and breast cancer statistics, a health systems analysis and qualitative data collected to lend a voice to those representing target populations and those living in the target areas. Demographic and Breast Cancer Statistics Methodology The information contained in this report comes from local, state and federal sources, including community and national organizations and individuals living in the service area. Statistics related to the general, social and economic characteristics of the service area were obtained from the U.S. Census American Community Survey (ACS) five year estimates. Data on breast cancer screening rates and access to health care were obtained from the Adult Behavior and Risk Factor Surveillance System (BRFSS). The BRFSS is a collaborative project between the Centers for Disease Control and Prevention (CDC) and U.S. States and territories. The BRFSS is an on-going data collection program intended to measure behavioral risk factors in the 4

5 adult population (ages 18 and above). Breast cancer incidence and mortality data was obtained from the Florida Cancer Data System (FCDS) and from the Florida Office of Vital Statistics, respectively. These are the same sources used in Florida for the annual cancer report. Demographics of the Service Area The Susan G. Komen for the Cure Miami/Ft Lauderdale Affiliate consists of three counties in South Florida: Broward, Miami-Dade and Monroe County. The service area is demographically diverse and is comprised of metropolitan areas, suburbs and small towns. The total service area population is approximately 4.3 million, ranging from 74,024 in Monroe County to 2,457,044 in Miami-Dade 1. Broward County Population: 1,759,132 Race: White (65.7%), Black (24.4%), Hispanic, any race (23.1%) Median family income: $62,518 Foreign-born: 29.6% Uninsured females: 18.8% County seat: Fort Lauderdale Miami-Dade Population: 2,457,044 Race: White (72.7%), Black (19.6%), Hispanic, any race (61.4%) Median family income: $49,360 Foreign-born: 49.4% Uninsured females: 25.6% County seat: Miami Miami-Dade County has the lowest median family income and the highest percent of foreign-born residents, Hispanic residents, and uninsured females within the service area. Monroe County Population: 74,024 Race: White (89.6%), Black (5.7%), Hispanic, any race (18.5%) Median family income: $67,994 (highest within service area) Foreign-born: 16.4% Uninsured females: 18.6% County seat: Key West Breast Cancer Statistics Key Findings The South Florida area, Broward and Miami-Dade Counties included is home to nearly a third of the state s uninsured people 2. Approximately 21% of Blacks and 32% of Hispanics in the state do not have any kind of health care coverage compared to 12.3% of Whites. Miami-Dade County has the highest percent of uninsured females within the service area. Broward County has the highest percentage of females over the age of 40 who have not had a mammogram in the past twelve months. In Broward and Monroe County as income levels increase the percentage of women who are screened for breast cancer also increases. 5

6 Miami-Dade County was home to 41% of the state s Haitian population in , while Broward County had the third largest Haitian population in 2000 (62,000) 4. Haitians experience similar barriers to healthcare as non-haitian Blacks and Hispanics, such as lack of insurance, low income, unemployment, and language barriers; however they also have additional barriers related to traditional healing practices and previous negative experiences and distrust of traditional western medicine 5,6. Such barriers make Haitians in South Florida less likely to participate in preventative health activities resulting in greater late stage diagnosis 7. Approximately 45% of breast cancer cases among women residing in Little Haiti involve regional and distant metastases 6. The rate of early stage breast cancer diagnoses is increasing (8% annually) among Blacks in Broward County. However, Broward County also has the highest rate of invasive breast cancer in the service area. The rate of late stage diagnoses is higher among Blacks in the state of Florida and within the service area 8. Breast cancer mortality is higher among Blacks than Whites and highest in Miami-Dade County. Monroe County has the highest total breast cancer mortality rate within the service area 8. Data is limited on women who partner with women, however, Monroe County is ranked 10 th within the top 25 counties in the U.S. with coupled households (married and unmarried partners) that are gay or lesbian and is the county with the highest percentage of gay or lesbian couples outside of a metropolitan statistical areas (MSAs). The Miami-Fort Lauderdale metropolitan area is ranked 2 nd among the top 25 MSAs with populations of coupled gay or lesbian households greater than 1 million 9. Lesbians or women who partner with women (WPW) are believed to have a higher risk of breast cancer than other women due to more risk factors, such as late child bearing. Target Areas of Interest Based on the demographic and breast cancer data collected or the lack of availability of such data the Community Profile team designated two main target areas for further investigation. Underserved women, specifically the uninsured or underinsured, elderly and lesbians or women partnering with women, have unique health barriers and must not be overlooked when prioritizing services. Further, minority groups at high risk for advanced stage diagnosis and high mortality rates are another target are of concern. Specifically, the large Black, Hispanic and Haitian populations within Miami-Dade and Broward County are a focus. Health Systems Analysis Data Source and Methodology Overview The health systems analysis was conducted to understand the gaps, needs and barriers facing women across the continuum of breast cancer care within the service area. This analysis examined the system limitations, barriers, local or national policies and issues that face women as they transition from breast care education to breast cancer screening to diagnosis and treatment and finally, follow-up care. The health systems analysis also looked to identify current providers of breast health care and community assets that could serve as potential partners. Several sources were used to identify relevant breast cancer related services within the service area. The Directory of Cancer Related Services in Miami-Dade County and The Florida Breast Cancer and Mammography Resource Guide from the University of Miami, Miller School of 6

7 Medicine and the Heartland Rural Health Network, respectively, were used as a starting point. An internet search was also used to focus on hospitals, clinics and community-based organizations (CBOs) in the service area. The Health Resources and Services Administration s website was used to locate federally funded/qualified health centers (FQHCs) 10. Finally, the National Cancer Institute s Cancer Information Services hotline was contacted to provide any additional resources. Geographic Information Systems (GIS) integrates hardware, software, and data for the purpose of capturing, managing, analyzing and displaying all forms of geographically referenced information. Important health care assets within the service area were mapped using ArcGIS (ESRI, Inc., 2010) software to provide a visual representation of breast healthcare services related to education, screening, diagnosis, treatment and follow-up care. In Broward and Miami-Dade County, countless programs, services, and comprehensive cancer centers addressing breast cancer are available. Many of the affiliate grantees consist of screening, education, and treatment programs throughout Broward and Miami-Dade. However, in Monroe County breast health services are limited, with only six facilities currently available to offer breast healthcare services to women. There are few options for immigrant, uninsured, or underinsured people. In Miami-Dade and Broward, these individuals must rely on each county s sole public health facility; Jackson Memorial Hospital (Miami) and Broward Health. While some organizations offer programs and services that are targeted at minority and underserved populations, there exist distinct barriers in accessing these services among some residents. Further, there is a need for culturally sensitive programs/services capable of communicating with people with limited English language skills. With the exception of one program provided by an affiliate funded grantee, Human Services Coalition of Dade County, Inc., there are no specific breast healthcare programs targeting the needs of the lesbian or women who partner with women community and no programs specifically target elderly women. Qualitative Data Ensuring Community Input in Research To truly understand all the issues facing target populations within the service area, the Community Profile utilized the expertise and experience of key informants and survivors within the service area. Qualitative data was collected using a range of formats, including phone interviews, surveys, and roundtable discussions. Overall twenty-four key informants and twentyone survivors participated in the qualitative data collection. From the qualitative data, we learned that support services are important to survivors both during and after their treatment. The majority of survivors had little trouble seeking mammograms and receiving treatment. However, because the survivors who responded were well educated, Caucasian, and primarily from Miami-Dade, we still need to focus on underserved and culturally diverse communities within the service area. The cost of health insurance or lack of insurance is a major health concern within the service area. Key informants believe that health fairs, seminars, community outreach, and education by physicians are effective means of disseminating breast health information. When asked which women were least likely to receive breast healthcare, key informants indicated that non-native English speakers, minorities, women with low to moderate income, uninsured or underinsured, undocumented and migrant workers, and the homeless were populations of concern. There are still barriers to breast healthcare within the service area. The cost of screening and treatment, transportation, eligibility criteria for free or 7

8 reduced cost services, language, literacy barriers, and the lack of providers in Monroe County limit the accessibility of care for some women. Key informants have recommendations for overcoming obstacles and reducing barriers to breast healthcare, for example providing mobile health services for Monroe County, and continue to need Komen support to achieve these goals. Conclusions Putting the Data Together The three-county service area is demographically diverse, and comprised of metropolitan and rural areas, suburbs and small towns. The total population within the service area is approximately 4.3 million. Miami-Dade County was identified to have the lowest median family income and the highest percent of foreign-born residents, Hispanic residents, families living below the poverty level and uninsured females within the service area. The South Florida area is home to nearly a third of the state s uninsured people 2. Demographic and breast cancer statistics determined the target areas should focus on underserved women, specifically uninsured or underinsured, elderly and members of the LGBT community. Additionally, advanced stage diagnosis and mortality rates among high-risk minority groups continue to be a focus of the service area. Research revealed that these groups/areas are still in need of education, screening, and treatment services. Selecting Affiliate Priorities The Miami/Ft. Lauderdale Affiliate has chosen to focus on the following priorities for the next two years based on the demographic makeup and breast cancer statistics of the service area combined with the results of the health systems analysis and the qualitative data. Priority 1: Partner with community-based organizations to effectively promote awareness on breast health education in populations most at risk for advanced stage diagnoses and mortality (Hispanic, Black or African-American, Haitian women). Priority 2: Partner with community-based organizations to establish breast health resources targeted at women who partner with women within the three-county service area. Priority 3: Increase the number of screening, diagnostic and treatment services in the service area for underserved women such as the elderly, uninsured or underinsured by funding health system partnerships to increase access to services. Priority 4: Advocate for breast cancer legislation that increases education, research and funding for breast healthcare. Affiliate Action Plan Based on the established priorities, the Affiliate has chosen to implement the following action items: 8

9 Objective 1: By March 2013, continue partnerships with at least three community-based organizations providing services to Black or African Americans, Hispanics or Haitians in order to continually distribute culturally appropriate educational materials about breast health. Objective 2: By March 2013, continue partnerships with at least three community-based organizations to navigate Black or African American, Hispanic or Haitian women to screening services to increase the rate of early diagnosis in the target population. Objective 3: By March 2013, continue partnerships with at least three community-based organizations provide supportive services during treatment and into follow-up care for Black or African American, Hispanic or Haitian women. Objective 4: By July 2012, meet with key representatives from the LGBT community in Broward, Miami-Dade and Monroe County to ascertain how the Affiliate can have a greater presence within the community. Objective 5: By March 2013, establish a presence within the lesbian or women who partner with women community by creating a Komen breast health education fact sheet to the targeted population. Objective 6: By March 2013, hold a stakeholders meetings with key informants and communitybased health organizations within the lesbian or women who partner with women community to discuss the development of sensitivity training for breast healthcare service providers. Objective 7: Prioritize funding for the next two fiscal years for community-based organizations that effectively address barriers to screening, diagnostic or treatment services among the uninsured, underinsured, or elderly women. Objective 8: By March 2013, develop a brief training session to enhance the ability of grantees, volunteers, partners and sponsors to incorporate a stronger Komen message in their communities. Objective 9: By March 2013, develop a Promise Panel (Advisory Group) consisting of a minimum of five breast cancer advocates and influential community members to tap significant donors and sponsors. Objective 10: By September 2012 develop an assessment survey to be distributed among current grantees to assess gaps in marketing or fundraising efforts for enlisting new grantees. Objective 11: In the next two fiscal years, continue to advocate for public policy in the state of Florida that promotes the breast health care education, early screening and equitable access and treatment for all women. 9

10 Introduction Affiliate History and Background Nancy G. Brinker promised her dying sister, Susan G. Komen, she would do everything in her power to end breast cancer forever. In 1982, her promise became Susan G. Komen for the Cure and launched the global breast cancer movement. Today, Komen for the Cure is the world s largest grassroots network of breast cancer survivors and activists fighting to save lives, empower people, ensure quality care for all and energize science to find the cures. Thanks to events like the Komen Race for the Cure, we have invested more than $1.9 billion to fulfill our promise, becoming the largest source of nonprofit funds dedicated to the fight against breast cancer in the world. The Miami/Ft. Lauderdale Affiliate of Susan G. Komen for the Cure held its first Race for the Cure in 1996 and was founded in 1999 and is dedicated to saving lives and ending breast cancer forever by advancing research, education, screening and treatment. The Susan G. Komen For the Cure Miami/Ft. Lauderdale Affiliate has raised more than $2 million in the fiscal year ending in March 2011 to support the fight against breast cancer. The affiliate funds a diverse group of outreach and educational programs in collaboration with local not-for-profit health care organizations, public health agencies and community groups in Miami-Dade, Broward and Monroe counties that further the Komen mission. Organizational Structure The Miami/Ft. Lauderdale Affiliate of the Susan G. Komen for the Cure is made up of a Board of Directors, paid staff, and volunteer committees. The organizational structure for the Miami/Ft. Lauderdale Affiliate is shown in Figure 1: Figure 1: Miami/Ft. Lauderdale Affiliate Organizational Structure 10

11 Description of Service Area The service area for the Miami/Ft. Lauderdale Affiliate of the Susan G. Komen for the Cure includes the following three counties in the South Florida area: Miami-Dade, Broward and Monroe (Figure 2). Monroe County was recently added to the service area in South Florida has been called a Cultural Mosaic or a Melting Pot and throughout history the region has been shaped by the blending of diverse people and cultures 11. In recent history, Cubans, Haitians, and a host of other groups have migrated to South Florida for a combination of social, political, and economic reasons. This migration has had lasting effects on the demographics of the region. Ethnic districts are located throughout the region mirroring the homelands, traditions, and customs of the settlers; the areas of Little Havana and Little Haiti are prime examples. While some groups have been largely successful, others continue to struggle for economic stability. A critical result has been racial and ethnic disparities in areas such as housing, education, and health. Figure 2: Map of Service Area SOURCE: Adapted from Florida County Map, Geology.com 11

12 Purpose of the Report The purpose of the Community Profile is to gather information about target areas in our threecounty service area for the purpose of identifying needs, barriers and gaps in service. Findings from the 2011 Community Profile will be instrumental in supporting the affiliate s strategic plan over the next two years, in defining specific strategies to address gaps and barriers to accessing services, and in assessing the quality and availability of breast healthcare services. The Community Profile includes an overview of demographic and breast cancer statistics, a health systems analysis and qualitative data collected to lend a voice to those representing target populations and those living in the target areas. Demographics and Breast Cancer Statistics Data Source and Methodology Overview Demographic Risk Data General, social, and economic characteristics of the service area population were obtained from the US Census. The most recent data available were presented. For most variables, the American Community Survey (ACS) five-year estimates were used 1. The percent without a high school degree is based on the population aged 25 or older. The percent of the civilian labor force that is unemployed is based on the population aged 16 or older. Median family income is based on inflation-adjusted 2009 dollars, and the poverty level is based on the income status of families within the past twelve months 1. Because the US Census is intended to provide information on voter eligibility and national representation, the demographic data is not ideal for describing the population at risk for breast cancer. While the US Census is intended to be a complete count of the US population, the risk factor data, such as income and language barriers, are only collected on a sample of the population. Homeless, poor and other disenfranchised persons, many of whom are at increased risk of breast cancer, are undercounted. Persons can choose from multiple race categories which are not directly equivalent to the incidence and mortality race categories. Due to confidentiality, small number stability, and other issues, data is aggregated into categories which does not allow for sub-group analysis on some important target populations, such as Haitians. Screening and Health Access Risk Data Data on screening rates and access to health care were obtained from the Adult Behavior and Risk Factor Surveillance System (BRFSS). The BRFSS is a collaborative project between the Centers for Disease Control and Prevention (CDC) and US States and territories. The most recent data available was collected in The BRFSS is an on-going data collection program intended to measure behavioral risk factors in the adult population (ages 18 and above). Not only are there sampling issues, but it is a telephone based survey. Data from individuals without phones are excluded which are often 12

13 individuals at increased risk of breast cancer mortality, such as those living in poverty. And the response rate in Florida has been declining and is currently less than 50%. Further, the BRFSS samples from landline phones which excludes households with a cell phone only (an estimated 12% of households in 2006) 12. Pilot efforts have determined that cell phone only households were statistically significantly different from the landline households in terms of demographics and health behaviors. While an effort to include such cell phone households is planned for the future, this is not applicable to the 2008 data. The 2008 survey was intended to create a stable, county level estimate which makes the data appropriate to use at the level of our Komen region 12. Outcome Data Breast cancer incidence data was obtained from the Florida Cancer Data System (FCDS) and the mortality data from the Florida Office of Vital Statistics. These are the same sources used in Florida for the annual cancer report. The most recent complete years of data available were collected in All rates are age-adjusted to the Year 2000 US Standard Population and are reported per 100,000 people 8. Because the greatest risk factor for breast cancer is increasing age, age-adjusted rates are calculated to allow comparison between communities with different age distributions. In situ incidence rates describe the frequency of cancer diagnosed at the earliest and most treatable stage. In situ and early stage (in situ and local stage combined) rates are indicators of the extent of screening in the population. In situ cancers can only be diagnosed with a screening mammography. Incidence rates (which do not include in situ cases) are a measure of the frequency in which breast cancer occurs in the region. The mortality rate describes the frequency of deaths due to cancer 8. Incidence and mortality data are population based and should be complete for the entire population of Florida. In reality, there are omission and data quality issues. However, each data source is collected according to national standards. Additionally, the FCDS data is gold certified by the North American Association of Central Cancer Registries (NAACCR) for data quality and completeness 8. Further, some detailed county level estimates of breast cancer statistics were provided by Thomson Reuters. These estimates were developed using Surveillance, Epidemiology and End Results (SEER) data from and were provided at the request of the Susan G. Komen for the Cure national organization 13. Together, the demographic, screening, health access, and breast cancer incidence and mortality data collected were analyzed and synthesized to provide a comprehensive picture of the affiliate service area. This comprehensive picture was then used to aid the affiliate in identifying and analyzing key target areas within the service area to collect more in-depth data by means of qualitative data collection and a health systems analysis. Characteristics of Service Area Demographic Statistics Florida is the 4th most populous state in the United States. In comparison to the nation, Florida has more Hispanic residents, is more racially diverse, older, and earns less income 1. As of 2009, the estimated state population was 18,537,969. As of 2007, 17% of Floridians are age 65 or older 13

14 According to The Census Bureau, Florida s population will grow by 26% between 2000 and The state s Hispanic population continues to increase. As of 2006, Florida had the 3 rd largest Hispanic Population. According to ACS figures, foreign-born persons represented 18.7% of the state population, but only 12.4% of the US population as a whole 1. Over three million new residents have moved to Florida. Immigrants accounted for approximately one-third of this figure 14. According to the ACS, Florida s median family income of $58,809 falls below the national average of $62,363. Florida also has a larger older population than the nation. In 2009, 16.9% of the state s population was age 65 or older while this group accounted for only 12.6% of the entire US population 1. General, social and economic characteristics of the nation, the state of Florida and the three counties within the service area are provided in Table 1. Table 1: State and Local Demographics Broward County United States Florida Broward Miami- Dade Monroe General Characteristics Total population 18,222,420 1,759,132 2,457,044 74,024 median age years or older 12.6% 16.9% 13.9% 14.1% 15.6% % Hispanic (any race) 15.1% 20.6% 23.1% 61.4% 18.5% % Black 12.4% 15.4% 24.4% 19.6% 5.7% Female Population % Females 50.7% 50.9% 51.3% 51.3% 46.9% Median age of women years or older 47.1% 51.7% 49.4% 48.5% 57.7% Social Characteristics % Without HS degree* 15.4% 15.1% 13.0% 23.5% 10.1% Foreign born 12.4% 18.7% 29.6% 49.4% 16.4% Non-English speakers at home 19.6% 25.8% 35.2% 70.3% 22.4% Economic Characteristics Unemployment rate 7.2% 7.5% 7.5% 7.6% 4.2% Mean travel time (min) to work Median family income $62,363 $58,809 $62,518 $49,360 $67,994 Families below poverty level 9.9% 9.5% 8.5% 13.5% 6.9% *Population > 25 years old Civilian Labor Force 16 years old Workers 16 years old 2009 inflation-adjusted dollars Poverty status in the past 12 months SOURCE 1 : Adapted from U.S Census Bureau, American Community Survey In comparison to Miami-Dade County, Broward County has more Black residents, fewer residents lacking high school degrees, fewer residents living below the poverty level, and more residents earning greater income. Broward County s population is Since 2001, more estimated at 1,759,132. Miami-Dade and Broward County are similar in blacks have come to the fact that they are more racially diverse than the state as a whole. In Broward County than fact, Broward County is now more diverse than Miami-Dade County 15. any other county in While, Miami-Dade has a large, single minority - the Hispanic the United States population, Broward County has experienced significant gains not only 14

15 in its Hispanic population but also the Black population. The increase in the Black population is attributed to the immigration of Afro-Caribbeans. Johnson and Benedict of the South Florida Sun-Sentinel report that since 2001 more blacks have come to Broward County than any other county in the United States. By 2030, the number of minority residents is expected to climb to 63% 16. Further, the Miami-Fort Lauderdale metropolitan area is ranked 2 nd, behind the San Francisco-Oakland-San Jose metropolitan area, among the top 25 MSAs with populations of coupled gay or lesbian households greater than 1 million 9. According to the 2005/2009 ACS figures, only 13% of Broward County s population lacked a high school degree; much less than less than 23.5% in Miami-Dade County. Eight and a half percent of families were below poverty level. The county s median family income, $62,518, exceeded the state s average by more than three thousand dollars, and Miami-Dade County by nearly thirteen thousand dollars 1. Miami-Dade County According to the U.S. Census, Miami-Dade County is the most populous county in Florida and the 8 th most populous county in the country. According to the 2005/2009 ACS Figures, the estimated population is 2,457,044. Females represent 46.9% of the Miami-Dade County population; the median age of women is slightly younger than the leads the nation with the highest number state s 1. Miami-Dade County is described as one of the most of foreign born international communities in the U.S. 17. Miami-Dade County leads the residents nation in the amount of foreign born residents, an estimated 49.4% in The City of Miami, the county s seat, has one of the largest Hispanic populations of any city in the U.S. 18. ACS estimates Hispanics and persons of Latin descent represent 61.4% of the population 1. The Hispanic population in particular has grown rapidly in recent decades with residents arriving principally from Cuba, Puerto Rico, and Haiti 19. Miami also has significant populations from Colombia, the Dominican Republic, Honduras, Venezuela, and Peru 20. Latin Americans, including Haitians, comprise over 96% of Miami s foreign-born population, with more than half hailing from Cuba 18. Based on the 2005/2009 ACS, the median household income in Miami-Dade County, $42,969, is 9.5% below the state average of $47, The Brookings Institution found that only half of working-age adults in Miami were employed or looking for work in This attributed to the growing distance between inner city residents and suburban job opportunities, and low educational attainment 18. According to ACS, 23.5% of the population was without a high school degree and an estimated 13.5% of families were below poverty level 1. The Haitian community is of particular interest in Miami-Dade County (Figure 3). The City of Miami became the highest point of concentration for Haitian refugees in South Florida throughout the 1970 s and 1980 s. The Edison/Little River area became known as Little Haiti. Today, unemployment rates are high and affordable housing is lacking. According to the Health Care Needs and Issues in Little Haiti: A Community Voices Project Report, there is a lack of collaboration among community based organizations, a history of mistrust, and competition that has cost the community Figure 3: Little Haiti Area Map SOURCE: Map 3. Miami, Little Haiti and Little Havana." DominicanToday.com, Forum 15

16 access to important resources and services 5. The Haitian community is further divided from Western medicine due to their reliance on traditional practices; botanicas and alternative medicine. At the time of the Little Haiti Community Collaborative survey to assess the needs of the Little Haiti community, they discovered that 73% of respondents had no health insurance 5. Monroe County Monroe County is the southernmost county in Florida and the United States. It is 73% water and comprised of the Florida Keys and portions of both Everglades National Park and Big Cypress National Preserve 21. The most well-known part of Monroe County is the Florida Keys, a chain of low lying islands connected by U.S. Highway 1, which ends 150 miles from Miami in Key West. Since most of Monroe County only has one highway, access to the county seat in Key West is difficult and time consuming 21. In comparison to Miami-Dade and Broward County, the population of Monroe County is significantly smaller with 74,024 residents and older, with a median age of Additionally, Monroe County has a smaller percentage of foreign-born, Hispanic and Black residents 1. According to the 2005/2009 ACS figures, 10.1% of Monroe County s population lacked a high school degree. The median family income of $67,994 is higher than the state average and that of Miami-Dade and Broward counties. The unemployment rate in Monroe County is over 3% lower than in Broward and Miami-Dade counties 1. Monroe County is also ranked 10 th within the top 25 counties in the U.S. with coupled households (married and unmarried partners) that are gay or lesbian and is the county with the highest percentage of gay or lesbian couples outside of a metropolitan statistical areas (MSAs) 9. Health Insurance In 2005, The Department of Health Services Research, Management and Policy released A Profile of Uninsured Floridians. The profile summarized the findings from the 2004 Florida Health Insurance Study 2. Of the 17,000 interviews conducted, 8,232 individuals were without health insurance. It was found that 81.5% of uninsured residents were working-aged adults. A disproportionate percentage of uninsured Floridians lived in Miami-Dade (20.9%). Approximately 30% of the uninsured were Hispanic and 20% were Black, including those of Haitian or Caribbean descent. The South Florida area, Miami-Dade and Broward included; is home to nearly a third of the state s uninsured people 2. Data collected from the 2008 BRFSS mirrored the trends unveiled in the 2004 Florida Health Insurance Study. Hispanics and Blacks in the state of Florida are less likely to have health care coverage. Approximately 21% of Blacks and 32% of Hispanics do not have any kind of health care coverage compared to 12.3% of Whites. Health care coverage rates increase as income and education levels increase 12. In the state of Florida, 35.5% of those with less than a high school degree lack any kind of health care coverage compared with 7.6% of college graduates 12. Figure 4 displays the percent of uninsured females within each of the service area s counties 13. The United States Economy: By 2009, 3.6 million jobs had been lost since the start of the recession in December of In 2009, the average time it took for unemployed persons to find a job rose to 19.8 weeks as opposed to 17.5 weeks in the year before 22. The suffering United States economy will continue to play a role in the increased need for access to breast health services and programs; however recovery may be on the way. In March of 2011, employers 16

17 added 216,000 new jobs in professional and business services, health care and restaurants. The unemployment rate in March 2011 edged down to 8.8%, a two-year low 23. Figure 4: Percentage of Uninsured Females by County SOURCE 13 : Thomson Reuters All Rights Reserved Breast Cancer Statistics Overview Mammography Screening Trends Figure 5 displays the number of women in each county who have not had a mammogram in the past twelve months 13. Florida 12 More Blacks over the age of 40 years have had a mammogram in the past two years (84.7%) than Whites (79.1%). As education level and income increase, the percent of women over age 40 who have had a mammogram increase. According to the 2008 BRFSS, 77.0% of women with less than a high school degree had a mammogram in the past two years compared to 84.9% with a college degree. Broward County 12 Data limitation - No data available on Non-Hispanic Blacks and persons with less than a high school diploma. More Non-Hispanic Whites (62.9%) over the age of 40 had a mammogram in the last two years compared to Hispanics (58.0%). 17

18 The percent screened was similar among those with a high school diploma, some college and college graduates. As income levels increased the percentage of women over the age of 40 who had a mammogram in past year also increased. Figure 5: Mammography Screening of Women (40+ years) in Past 12 Months SOURCE 13 : Thomson Reuters All Rights Reserved Miami-Dade County 12 More Non-Hispanic Blacks (78.3%) and Hispanics (63.8%) have had a mammogram in the past two years than Non-Hispanic Whites. The percent screened was similar among those with less than a high school diploma and college graduates. Monroe County 12 Data limitation - No data available for Non-Hispanic Blacks, Hispanics and persons with less than a high school degree. Of women over the age of 40, 62.1% of Non-Hispanic Whites had a mammogram in the past two years. As income levels increased the percentage of women screened increased. The percent screened was similar for those with a high school diploma, some college and college graduates. Female Breast Cancer Incidence Affiliate Region Invasive: The rate of invasive female breast cancer is lowest in Monroe County (89.3 per 100,000) and higher in Broward County (103.5 per 100,000) than in Miami-Dade County (100.7 per 100,000). The rate of invasive breast cancer is higher among Blacks in Broward County (103.4 per 100,000) than Blacks in Miami-Dade County (86.1 per 100,000). Monroe County is 18

19 suppressed due to confidentiality or stability issues related to the data. The rate of invasive breast cancer among Blacks is increasing by approximately 6% in Broward County and 4% in Miami-Dade County. The rate among Whites is decreasing by approximately 2% in both counties 8. Table 2: Female Breast Cancer Incidence Rates by Stage and Race, Diagnosis Year 2008 Invasive Early Stage Late Stage Rate Count Trend (5yr) Rate Count Trend (5yr) Rate Count Trend (5yr) Florida , * , * , * White , , , Black , * , * SGK Region , , , White , , * Black Broward , , White Black * Miami-Dade , , White , * Black Monroe 89.3 ^ ^ ^ White Black ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ rate/count suppressed due to stability/confidentiality issues Trends Annual Percent Change based on yr trends Rates are per 100,000 and age-adjusted to the 2000 US Std Million (18 age groups) standard SOURCE 8 : Adapted from the Florida Cancer Data Systems (FCDS), 2008 * indicates statistically significant annual change (p<0.05) Early Stage: The rate of early stage breast cancer diagnoses is higher in Monroe County than in Broward or Miami-Dade. Unlike Monroe, the rate of early stage is decreasing in both Broward and Miami-Dade County. In Broward County, the 8% increase in the rate of early stage diagnoses is statistically significant, however among Whites the rate of early stage diagnoses is decreasing by approximately 1%. The trend is similar In Miami-Dade County with an increase of approximately 3% among Blacks and nearly a 6% decrease among Whites 85. Late Stage: The rate of late stage breast cancer is highest in Miami-Dade County (40.8 per 100,000). However, Blacks in Broward County have the highest rate of late stage breast cancer (44.0 per 100,000). The rate of late stage diagnosis is increasing in the state of Florida as well as in both Miami-Dade and Broward County. The rate of late stage diagnoses is decreasing by nearly 11% in Monroe; however rates among Black are suppressed due to confidentiality or stability issues 8. Female Breast Cancer Incidence Key Findings 19

20 Broward County has the highest rate of invasive breast cancer in the service area. Breast cancer incidence for Blacks in Monroe County is limited, thus hampering our efforts to accurately assess the situation for female minority residents in this county. The rate of invasive breast cancer is increasing among Blacks and decreasing among Whites in both the state of Florida and within the service area. In both Broward and Miami-Dade County, the rate of late stage diagnoses are increasing and the rate of early stage are decreasing. The rate of late stage diagnoses is higher among Blacks in the state of Florida and within the service area. The rate of early stage diagnoses is increasing among Blacks in Broward County. The increase in early stage breast cancer diagnoses in Broward County could be a result of greater breast cancer screening. Female Breast Cancer Mortality Affiliate Region Female mortality rates by race and county are displayed in Figure 6. Mortality rates among the state and Komen Affiliate region are similar. At the state level, the total mortality rate is per 100,000, with a higher mortality rate in Blacks (28.18 per 100,000) than Whites (19.10 per 100,000). The total mortality rates in Broward, Miami-Dade and Monroe County are similar, with higher rates among Blacks in Broward and Miami-Dade 8. In Monroe County there were too few cases to calculate a stable mortality rate for Blacks. The highest mortality rate in the service area is among Blacks in Miami-Dade County at nearly 28 per 100,000. This supports the notion that Blacks are more likely to die from breast cancer than any other race due to contributory social and economic disparities. Populations likely to be diagnosed at later stages such as Blacks and Hispanics must continue to be targeted by breast health programs and services 8. Figure 6: Breast Cancer Mortality Rates by Race and County,

21 Target Areas of Interest Based on the demographic and breast cancer data collected or the lack of availability of such data, the designated target areas for the Community Profile team to investigate further are described below: Advanced Stage Diagnosis and Mortality Rates among High-Risk Minority Groups While our data did not indicate a statistically significant difference in screening rates among minority women and White women in the affiliate region, mortality rates are higher for Blacks in both Miami-Dade and Broward County and unavailable in Monroe County. Additionally, the 5- year relative survival rate of female breast cancer is lower among African Americans across every stage of diagnosis 24. Incidence and mortality data collected did not separate Hispanics from whites; however, breast cancer is the most commonly diagnosed cancer and the leading cause of death among Hispanic women 16. Hispanic women are approximately 20% more likely to die of breast cancer than non-hispanic Whites diagnosed at a similar age and stage 25. More barriers to prevention and treatment, such as language barriers, immigration status, migratory work patterns, lower income, cultural health beliefs, and transportation, are characteristic among minority women. Further, Miami-Dade County is considered the center of Haitian life in the United States with 41% of the state s Haitian population living in Miami-Dade in Broward County had the third largest Haitian population in 2000 (62,000) 4. The settlement patterns of Haitian residents tend to be concentrated, with the heaviest concentration of Haitians in Miami-Dade County residing in the northeast corner of the City of Miami. The Brookings s Institution discovered a trend of high poverty, low income, low educational attainment and a younger median age than the overall population. Further, Haitians are more likely to work low-wage jobs and spend a larger portion of their incomes on basic necessities. The University of Miami s Miller School of Medicine found that 50% of Haitians under age 50 were uninsured 26. The Sant La Haitian Neighborhood Center identified lack of insurance due to immigration status, belief in alternative medicine, high unemployment rate and lack of proficiency in English as some of the risk indicators for Haitians 27. The city of Miami has the poorest Haitian population, while the city of Miramar in Broward County has the wealthiest 3. Haitians experience similar barriers to healthcare as non-haitian Blacks and Hispanics, such as lack of insurance, low income, unemployment, language barriers; however they also have additional barriers related to traditional healing practices ( reméd féy ), health consultations at Botanicas and previous negative experiences and distrust of traditional western medicine 5,6. Such barriers make Haitians in South Florida less likely to participate in preventative health activities. Because they are less likely to engage in preventative health activities, Haitian women are more likely to be diagnosed with late stage breast cancer and suffer disability and death 7. Approximately 45% of breast cancer cases among women residing in Little Haiti involve regional and distant metastases 6. Special and consistent attention must be paid to detection, follow-up, treatment, and post-care services in minority populations, specifically Hispanic- Black and Haitian populations in Miami- Dade and Broward Counties. 21

22 Underserved Women The South Florida area is home to nearly a third of the state s uninsured people 2. Miami-Dade County has the highest percentage of uninsured females (25.6%). BRFSS data indicates that more Blacks and Hispanics lack health insurance than Whites. Socioeconomic factors, such as educational attainment, play a role in percentage of uninsured or underinsured women. Florida s population is older than the nation s population with Floridian s aged 65 and older representing approximately 17% of the total population. Within the service area, Monroe County has the oldest population with 16% of the total population age 65 or older. Between the years of 2000 and 2030, the older U.S. population is expected to double in size 28. The elderly face unique barriers in accessing health care services. These barriers include perceived lack of physician responsiveness to concerns, medical bills, difficulty with transportation, street safety, fear of discovering a serious illness, and fear of unneeded tests 29. Given that breast cancer risk increases with age, special attention must be paid to this population. Prevention and treatment efforts should be as aggressive in the elderly population as in the younger population. It is important to note that Americans who are 65 years old today can expect to live another 18.4 years 30. Data is limited on women who partner with women, but the Miami-Fort Lauderdale MSA and Monroe County are among the top ranked areas with large populations of gay or lesbian individuals. The 2000 Census provided counts on same sex, unmarried partner households but is believed to have undercounted by as much as 62% 9. Lesbians or women who partner with women (WPW) are believed to have a higher risk of breast cancer than other women because they usually have more risk factors. For example, lesbians are less likely to bear children and are less likely to have children earlier in life. Obesity and alcohol use rates are also higher among lesbians. Furthermore, they are less likely to get routine mammograms and clinical breast exams. There could be nearly 4.5 million lesbians living in the United States (3% of the female population) 31. Health Systems Analysis Data Source and Methodology Overview In an effort to understand the gaps, needs and barriers facing women across the continuum of breast cancer care, the Community Profile conducted an in-depth analysis of the health system within the service area. The health system analysis examined the system limitations, barriers, local or national policies and issues that face women as they transition from breast care education to breast cancer screening to diagnosis and treatment and finally, follow-up care. The health systems analysis also looked to identify current providers of breast health care and community assets that could serve as potential partners. The University of Miami, School of Medicine s Directory of Cancer Related Services in Miami- Dade County and Heartland Rural Health Network s Florida Breast Cancer and Mammography Resource Guide were used as a starting point to assess programs and services offered throughout the affiliate s services area. This information was supplemented by subsequent web searches 22

23 focusing on area hospitals and community-based organizations (CBOs) as well as programs and services that targeted by income, race/ethnicity, gender, sexual orientation, and age. The hospitals were narrowed down by those with specific breast cancer programs/specialties and services. The National Cancer Institute s Cancer Information Services hotline was contacted and they provided additional cancer resources available in Florida. Finally, the Health Resources and Services Administration s Find a Health Center webpage 10 was used to locate Federally Funded/Qualified Health Centers (FQHCs) in the affiliate area. Geographic Information Systems (GIS) integrates hardware, software, and data for the purpose of capturing, managing, analyzing and displaying all forms of geographically referenced information. For the purpose of this health systems analysis, the exact address of each hospital, clinic, CBO, FQHC and other programs and services were identified and mapped using ArcGIS (ESRI Inc., 2010) to graphically display important health care assets within the service area. Mammography centers were defined as clinics, health centers, or outpatient hospital units that provided mammography services. Some of the mammography centers identified provided additional women s health services. Hospitals were defined as medical centers that were equipped to provide comprehensive breast care including screening, diagnostic, and treatment services. FQHCs are community-based and patient-directed organizations that serve populations with limited access to health care. These centers may serve medically underserved populations, such as low income populations, the uninsured, the homeless, migrant workers or those with limited English proficiency 32. For the purpose of this health systems analysis, FQHCs were included if they provided care for adult women. Komen grantees for the fiscal year were included in the health systems analysis if they provided education, screening or treatment services. The resulting map (Figure 7) is a visual representation of important sites within the service area that provide breast healthcare services across the continuum of care. The GIS map displays health system sites against the number of women aged 40 or older by zip code. Health Systems Overview In Broward and Miami-Dade County, countless programs and services addressing breast cancer across the cancer continuum are available. There is an abundance of hospitals throughout Miami-Dade and Broward County with breast centers and comprehensive cancer programs. GIS mapping revealed that affiliate grantees consisting of screening, education and treatment programs were located throughout Miami-Dade and concentrated in East Broward County (Figure 7). However, in Monroe County breast health services are limited. Only six facilities were identified that currently were available to offer breast healthcare services to women across the 220 miles of the Florida Keys (Figure 7). While there are few FQHCs in Broward and Miami-Dade County, there are few options for immigrant, uninsured, or underinsured people, which represent a significant portion of South Florida s Population. In Miami-Dade and Broward these individuals must mainly rely on each county s sole public health facility; Jackson Memorial Hospital (Miami) and Broward Health. While, some organizations offer programs and services that are targeted at minority and underserved populations, there exist distinct barriers in accessing these services among some residents. For example, many of the available programs have specific qualifying criteria such as age and income, which may result in certain individuals being overlooked. These individuals 23

24 may not be able to afford private health insurance, but do not qualify for free or low-cost assistance. Further, there is a need for culturally sensitive programs/services and staff capable of communicating with people with limited English language skills. This might mean that programs need to be translated into Spanish and Creole or have multilingual staff. In regards to LGBT resources, The National Gay and Lesbian Task Force and the Gay and Lesbian Community Center of South Florida seemed to focus primarily on HIV/AIDS. However, The Miami-Dade Gay and Lesbian Chamber of Commerce and the Gay and Lesbian Medical Association provide a directory of Gay and/or Allied Medical Professionals. With the exception of one program provided by an affiliate funded grantee, Human Services Coalition of Dade County, Inc., there are no specific breast healthcare programs targeting the needs of the lesbians or women who partner with women. Although, LGBT organizations such the Gay and Lesbian Community Center of South Florida and Aqua Women Foundation support and promote overall health and wellness within the LGBT community. A lack of detailed information on this community limits the conclusions that can be drawn on gaps, barriers and issues for breast care services. Partnerships and Opportunities In the fiscal year ending in March 2011, the affiliate raised more than $2 million to fund not-forprofit healthcare organizations, public health agencies, and community groups in Miami-Dade, Broward and Monroe counties (Table 3). More than 7,000 medically underserved individuals will be impacted by the grant dollars provided for mammograms and other breast health services across the continuum of care and thousands more will be impacted by education and awareness programs. 24

25 Figure 7: Breast Healthcare Services in Miami/Ft. Lauderdale Affiliate Service Area *Komen Grantees from fiscal year , FQHC = Federally Qualified Health Center 25

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