SUSAN G. KOMEN CENTRAL FLORIDA EXECUTIVE SUMMARY

SUSAN G. KOMEN CENTRAL FLORIDA EXECUTIVE SUMMARY

Acknwledgments The Cmmunity Prfile Reprt culd nt have been accmplished withut the exceptinal wrk, effrt, time and cmmitment frm many peple invlved in the prcess. wuld like t extend its deepest gratitude t the Bard f Directrs and the fllwing individuals wh participated n the 2015 Cmmunity Prfile Team: Sandra Baranes Executive Directr Susan G. Kmen Central Flrida Amara Crpus UCF Intern, Cllege f Business Susan G. Kmen Central Flrida Jeri Franceur Bard President and Public Plicy Chair Susan G. Kmen Central Flrida J. David Harding Vice President, Susan G. Kmen Central Flrida Administratr, Beach Medical Imaging/Beach Medical Specialists Shala Masd, MD Chair, Department f Pathlgy & Labratry Medicine University f Flrida, Cllege f Medicine Jacksnville A special thank yu t the fllwing fr their assistance with data cllectin and analyses, as well as prviding infrmatin included in this reprt: Kmen Flrida Public Plicy Cllabrative All the individuals and rganizatins wh supprted this prcess by attending fcus grups and being interviewed Reprt Prepared by: Susan G Kmen Central Flrida 1755 Ovied Mall Bulevard Ovied, FL 32765 (321) 972-5534 www.kmencentralflrida.rg Cntact: Sandra Baranes, Executive Directr 2 P age

Executive Summary Intrductin t the Cmmunity Prfile Reprt, funded in 1999, prvides services in nine Central Flrida cunties (Brevard, Flagler, Lake, Marin, Orange, Oscela, Seminle, Sumter, and Vlusia) with the purpse f carrying ut Kmen s missin t end breast cancer frever. Kmen Central Flrida is part f the wrld s largest and mst prgressive grassrts netwrk wrking t fight breast cancer. Key fundraising prgrams fr Kmen Central Flrida are the annual Race fr the Cure, Rally fr the Cure, and third-party event fundraisers held by individuals and grups t benefit the lcal Affiliate. Key missin prgrams f Kmen Central Flrida are: Cmmunity Grants prgram Referral surce fr breast health services Includes linking patients t Kmen-funded services such as free screening mammgrams and mre Cmmunity awareness, utreach and educatin activities and initiatives State and Federal advcacy Kmen Central Flrida directs 75 percent f its net fundraising effrts t its Cmmunity Grants, an annual cmpetitive grants prgram which allws lcal nnprfits t apply fr funding s that they can prvide uninsured and underinsured individuals with free r lw-cst mammgrams, ultrasunds, MRI s, bipsies, chemtherapy, hrmne therapy, lumpectmies, and mastectmies, as well as survivrship prgrams (financial assistance, physical therapy, exercise prgrams, cmpressin garments, lymphedema massage therapy, and mre). Based n cmmunity fundraising supprt, Kmen Central Flrida has awarded mre than $4.2 millin thrugh its Cmmunity Grants prgram since 1999. The remaining 25 percent net f the Affiliate s fundraising campaigns are cmbined with funds frm 116 ther Affiliates t cmprise the Susan G. Kmen Research Prgrams, the largest US nnprfit fund, utside the US gvernment, fr grundbreaking breast cancer research grants. Since 1980, Kmen has funded a ttal f mre than $899 millin in wrldwide breast cancer research. The Cmmunity Prfile, cmpiled every fur years, is a resurce fr Kmen Central Flrida t educate and infrm the cmmunity abut the fllwing key areas: 1) the state f breast cancer in the service area; 2) the Affiliate s current Missin pririties; and 3) the develpment f strategic and peratinal plans that align t address the identified, unmet breast health and breast cancer needs within the targeted cmmunity, including achievement f the federal gvernment s Healthy Peple 2020 targeted gals fr late-stage breast cancer diagnsis and breast cancer death. Ideally, the Cmmunity Prfile Reprt will drive inclusin effrts in the targeted cmmunity, drive public plicy effrts, fcus educatin needs, and establish the directin f lcal marketing and 3 P age

utreach prgrams. By placing an emphasis n the specific breast health needs in the cmmunity, the hpe is that Kmen Central Flrida fundraising effrts will be blstered. Quantitative Data: Measuring Breast Cancer Impact in Lcal Cmmunities Upn review f the Quantitative Data regarding Kmen Central Flrida s nine cunties, interventin pririties immediately became apparent based n the predicted time t achieve the tw breast cancer targets f the Centers fr Disease Cntrl and Preventin s (CDC) Healthy Peple 2020 (HP2020) guidelines. In reviewing the data, Oscela Cunty was ranked the Highest Pririty f the nine cunties served by Kmen Central Flrida based n tw breast health cncerns determined in the CDC s guidelines. The first bjective f HP2020 is t reduce the breast cancer death rate t a target f 20.6 deaths per 100,000 females. Oscela Cunty s base rate fr 2006-2010 is 24.1 deaths per 100,000 females and it is predicted that it will take Oscela Cunty 13 years r lnger t achieve the HP2020 target. The ther bjective f HP2020 is t reduce the number f breast cancer cases that are fund at late-stage t a target f 41.0 cases per 100,000 females. Oscela Cunty s base rate fr 2006-2010 is 42.0 cases and it is predicted that it will take 13 years r lnger t achieve the HP2020 target. The Kmen Central Flrida Cmmunity Prfile Team selected Oscela Cunty as a key fcus area based n the frecasted data. Brevard, Flagler, and Lake Cunties were listed as Medium High Pririties. While each ne f the cunties als had an HP2020 target that was 13 years r lnger in ne categry, it was balanced with substantially lwer years needed t reach the target in the ther categry. Kmen Central Flrida s ther cunties ranked as fllws: Marin, Orange, and Vlusia were a Medium Pririty; Seminle s statistics reflected a Lw Pririty; and Sumter Cunty was listed as the Lwest Pririty f the nine cunties because they currently meet bth targeted bjectives, despite it being an lder, rural, medically underserved cmmunity. Oscela residents ages 40-64 with incme belw 250 percent pverty cmprised 47.2 percent f the ppulatin, making it the highest in the nine-cunty service area f Kmen Central Flrida. During the same timeframe the State had 39.0 percent and the Natin had 33.3 percent f its residents with incmes belw 250 percent pverty. In cmparisn t Flrida s 24.2 percent and the Natin s 16.6 percent f individuals age 40-64 with n health insurance, 25.0 percent f Oscela Cunty residents age 40-64 have n health insurance, the highest ppulatin in the Affiliate s service area. Health Resurces and Services Administratin (HRSA) data fr 2013 indicates that 100 percent f Oscela residents are in medically underserved areas, cmpared t 7.5 percent in the State and 23.3 percent in the Natin. Additinally, 11.8 percent f Oscela residents are linguistically islated, cmpared t 7.1 percent in the State and 4.7 percent in the United States wh are linguistically islated (defined as a husehld in which all the adults have difficulty with English). 4 P age

At +4.6 percent, Oscela had the highest trend rate fr breast cancer incidence rate f all nine cunties within Kmen Central Flrida s territry. Additinally, cnfidence intervals may be an indicatr that Oscela Cunty wmen may nt have the needed access t mammgram screenings. Health Systems and Public Plicy Analysis Website research plus telephne interviews and e-mail crrespndence with breast health care prviders and ther key infrmants identified several weaknesses within the Oscela Cunty cmmunity: Oscela is a 100 percent medically underserved cmmunity, meaning that the number f health care prfessinals recmmended by the federal gvernment is nt sufficient fr the number f peple in the cmmunity. There are substantial language barriers in this cunty. Althugh translatrs are available fr this ppulatin, many medical frms are nly available in English. Cultural barriers exist there is a large Hispanic/Latina cmmunity, plus islated pckets f thse whse primary language is Crele r Vietnamese. Additinally, the cmmunity is knwn t have a high rati f hmeless peple. Within each f these cultures there are many beliefs and myths regarding breast cancer and its treatment. Additinally, many are afraid that authrities will be ntified regarding their immigratin r husing status. Althugh the Flrida Breast and Cervical Cancer Early Detectin Prgram (FBCCEDP) is available thrugh the Oscela Cunty Health Department, prgram funds are limited funding is nly available fr 5.4 percent f the eligible ppulatins statewide. Additinally, Flrida is listed as an Optin One state under the Medicaid Treatment Act, meaning a patient must initiate their breast health care with the prgram. If a breast screening is dne utside f the prgram, the patient is nt eligible fr Medicaid services if diagnsed with breast cancer. Flrida ranks third in the United States in the number f new breast cancer cases per year and secnd in the number f deaths, with apprximately 15,700 Flridian wmen diagnsed and an estimated 2,700 mre expected t have died frm this disease in 2013, highlighting the imprtance f FBCCEDP t Kmen s Flrida Affiliates and t thse whm they serve. Of particular nte is that Flrida did nt pt t set up its wn Affrdable Care Act (ACA) Marketplace, defaulting t a Federally-facilitated Marketplace. Additinally, Flrida did nt chse t expand Medicaid, excluding 1.2 millin residents. This reflects 764,000 residents (<100 percent f the Federal Pverty Level) that currently fall int a cverage gap and anther 448,000 (100-138 percent f the Federal Pverty Level) wh therwise may have been eligible 5 P age

fr Marketplace tax credits. Prgrams t prvide lw-incme wmen access t early detectin and preventin screening, and treatment services are in critical need in Flrida. The Affrdable Care Act mandated a variety f benefits which psitively impact the majrity f the US ppulatin, including wmen receiving breast health services thrugh Kmen Central Flrida. The increased availability f free and lw-cst insurance prgrams thrugh the ACA, cmbined with guaranteed cverage and the allwance f payment f premiums by third parties, prvides the pprtunity t cnsider new ptins fr funding care acrss the cntinuum. Kmen Central Flrida allcates funds via its Cmmunity Grants prgram t nnprfit rganizatins that prvide: 1) full cntinuum f care fr breast health services screening, diagnstics, treatment, and survivrship prgrams, as needed, fr each patient; 2) breast health awareness educatin prgrams; and/r 3) navigatin prgrams fr breast cancer patients and survivrs. The financial limitatins f FBCCEDP within Flrida, the cnfinements f being an Optin One FBCCEDP state, and the issues related t the ACA, are amng the reasns that the six Kmen Affiliates in Flrida wrk tgether thrughut the year n state and federal public plicy issues; the grup is knwn as the Kmen Flrida Public Plicy Cllabrative, r simply the Cllabrative. The Cllabrative hsts an Annual Meeting at which the plicy and legislative issues fr the upcming year are articulated and priritized. These issues are determined cnsidering the verall Susan G. Kmen Headquarters plicy directives, as well as thse that are state specific and likely t result in imprving the quality f care fr Flrida residents affected by breast cancer. Additinally, Kmen s Flrida Affiliates make it a pririty t be active members in their lcal C-CRAB Cancer Cntrl and Research Advisry Cuncil, the state s Cmprehensive Cancer Cntrl Calitin. The main areas f cncern that the Cllabrative fcuses n within C-CRAB is Preventin, Treatment and Access t Care, and Survivrship. Within Oscela Cunty, breast cancer services appear t be disjinted, suggesting that mre cllabratin amng health care prviders is needed, particularly due t the limitatins f FBCCEDP and the ACA. Qualitative Data: Ensuring Cmmunity Input Susan G. Kmen Central Flrida cnducted three fcus grups and twelve ne-n-ne interviews with Breast Cancer Survivrs, Kmen grantees, health care prviders, and cmmunity leaders t determine the current breast health and breast cancer needs and seek recmmendatins fr future prgramming and funding effrts. Oscela Cunty is a tight-knit cmmunity s small fcus grups and ne-n-ne cnversatins with key infrmants were selected as an apprpriate methdlgy fr gathering data fr the Cmmunity Prfile Reprt. 6 P age

A ttal f nine pre-selected questins were asked f all fcus grup participants and individual interviewees, fcusing n access, utilizatin, and quality. A ttal f twelve individual interviews were scheduled; each interview was cnducted either in persn r by telephne by the same interviewer and lasted 30-45 minutes. In additin t the twelve key infrmant interviews, three fcus grups were held, with cnversatins being gruped as fllws: breast cancer survivrs, health care prviders, and Hispanic/Latina wmen. The fcus grups were cnducted in persn and lasted 45-75 minutes; a ttal f 28 participants were invlved in these cnversatins and the size f the grup ranged frm fur t seventeen. Respndents appreciated learning that the cncerns in the cmmunity regarding late-stage and death rates amng its residents will be addressed by Kmen Central Flrida as it endeavrs t fcus its prgrammatic and funding effrts in Oscela Cunty: 1. Breast health educatin and utreach prgrams (awareness) fr the general public must be greatly increased, particularly within traditinally underserved cmmunities, in rder t reduce late-stage and death incident rates. 2. Netwrking and educatinal pprtunities need t be created fr like-minded health care prviders t increase cmmunicatin and knwledge f lcal breast health care services. 3. Reduce barriers t breast health services. 4. Partnerships need t be frmed t ensure that patients, with limited persnal and lcal financial resurces, travel all the way thrugh the Cntinuum f Care, as needed fr their wn, persnal experience. The cnversatins with fcus grups and individuals were extremely cnsistent in their supprt f creating breast health care partnerships in Oscela Cunty. It appears that many rganizatins wrk independently f ne anther and are therefre unaware f the services available thrughut the regin. The Kmen Cmmunity Prfile interviewer believes that these unintended sils have been created nt due t lack f interest in wrking tgether, but rather by prviders wh are inundated with n-site wrk requirements (seeing patients and ding paperwrk) and wh d nt have the staffing resurces that permit even ne staffer t attend a netwrking r educatinal functin. It shuld again be nted that Oscela Cunty is ne f tw federally-designated, medically underserved cmmunities in Kmen Central Flrida s territry (the ther being Sumter Cunty, with a much smaller ppulatin). One Oscela health care prvider indicated that the dctrs have mre cases than they can handle in any ne day. They tell me that after they finish their wrk at their ffices that they g hme and d paperwrk fr hurs in rder t ready fr patients the next day. There appears t be a genuine interest in cllabrating and many interviewed viced the value that culd be achieved by creating venues fr pen dialgue and sharing knwledge and 7 P age

resurces. It is clear that frging partnerships and aggregating frces will add great value t the breast health issues that face Oscela Cunty, including the value added by ensuring the patients g all the way thrugh the Cntinuum f Care based upn their wn, individual needs. Missin Actin Plan Althugh Kmen Central Flrida cvers a ttal f nine cunties, there are just tw paid staff members, s a realistic Missin Actin Plan was written in recgnitin f these cnstraints. Statement f Need- Educatin and Outreach fr General Public The general public has limited access t breast health educatin and utreach prgrams (awareness) in Oscela Cunty. The prblem f limited breast health and breast cancer infrmatin is f great cncern within the predminant Hispanic/Latina cmmunities (46.6 percent), as well as rural cmmunities, due t the high late-stage and death incident rates thrughut the cunty. The Healthy Peple 2020 (HP2020) dcuments references that it will take 13 years r mre fr late-stage diagnsis rate and death rate targets t be met. Pririty: Increase breast health educatin and utreach t the Hispanic/Latina, hmeless, and rural cmmunities in Oscela Cunty. Objective #1: Prir t August 2015, cmmunicate with all current Kmen grantees and related cmmunity partners t frm a wrk grup (t be knwn as Kmen Oscela Breast Health Wrk Grup) t frmulate an initial plan t increase breast health educatin and utreach prgrams (awareness) in the Hispanic/Latina and rural cmmunities, with a heavy fcus n the upcming Natinal Breast Cancer Awareness Mnth in Octber. Objective #2: Prir t September 2015, Kmen Oscela Breast Health Wrk Grup develps a detailed list f available free and reduced-cst mammgrams fr publicatin and mass distributin in time fr Natinal Breast Cancer Awareness Mnth in Octber. Update list annually. Objective #3: Annually, beginning January 2016, Kmen Oscela Breast Health Wrk Grup will crdinate five (5) culturally-apprpriate breast health events where wmen age 40+ can sign up fr a free mammgraphy screening appintment and/r get a free r reduced-cst mammgraphy screening n site. Distribute Breast Self-Awareness messaging cards in Spanish and/r English. Lcatins as fllws Hispanic/Latina Wmen, Kissimmee 2 Hmeless Wmen, Kissimmee 1 Hispanic/Latina Wmen, St. Clud 1 Hispanic/Latina Wmen, Pinciana 1 8 P age

The lcatin f these breast health events shuld be reviewed annually t ensure that the cmmunity need is being met, with site lcatins rtated as apprpriate. Objective #4: In January 2016, hld a meeting f the Kmen Oscela Breast Health Wrk Grup t assess the utcme f educatin and utcme activities t date. The Wrk Grup wuld cntinue t meet a minimum f tw times per year. Crdinatin f effrts will be supplemented thrughut the year with e-mails and telephne cnferences. Statement f Need- Educatin fr Breast Health Prfessinals There is a lack f cmmunicatin between health care prviders in Oscela, resulting in a lack f knwledge f available services. Pririty: Increase breast health educatin fr breast health prfessinals in Oscela Cunty. Objective #1: Beginning in FY 2016, Kmen Central Flrida will assist the Kmen Oscela Breast Health Wrk Grup in facilitating an annual Breast Health Frum t: Increase understanding f breast cancer screening recmmendatins supprted by Susan G. Kmen. Increase knwledge f varius referral prcesses t better navigate patients thrugh the Cntinuum f Care. Using evidence-based prgramming, educate breast health prfessinals abut the mst current breast health recmmendatins and ther evidence-based prgrams that wuld increase their patients screening percentages. Share resurces available in the cmmunity. This wuld be a simple wrking breakfast r lunch with tw featured speakers, plus a presentatin frm ne f the Kmen grantees in Oscela. Due t lack f Kmen Missins staff, this event wuld primarily be crdinated by the Kmen Oscela Breast Health Wrk Grup. The Breast Health Frum will last apprximately three hurs. 9 P age

Statement f Need- Reduce Barriers t Breast Health Services A variety f barriers exists in Oscela Cunty, r are perceived t exist, reducing r eliminated access t breast health services. These include: cultural beliefs, lack f breast educatin, inability t access care due t wrk schedules, lack f health insurance and/r mney, language skills levels, lack f transprtatin t get t appintments, and lack f knwledge f available pprtunities and services. Pririty: Reduce barriers t breast health services t ensure that mre wmen receive screening mammgrams, regardless f their race, ethnicity, r ecnmic hardships that they face. Objective #1: Beginning in FY 2016, lcal nnprfit rganizatins wh receive Kmen Central Flrida grants will prvide mre n-site, free and lw-cst mammgraphy screenings s that wmen wn t have t miss wrk r find transprtatin t get t a medical appintment. Pririty will be given t Kmen-funded grantees whse grant-funded prgrams make use f the area s mbile mammgraphy units. Objective #2: Prvide general breast educatin in the apprpriate language t prevent cnfusin and instill new cultural beliefs: Beginning in FY 2016, Kmen Central Flrida will make culturallysensitive infrmatin available t the Kmen Oscela Breast Health Wrk Grup fr use with a variety f grups thrughut Oscela Cunty, including English, Spanish, Black/African-American, Crele, Vietnamese, and simplified language skill Breast Self-Awareness messaging cards and ther materials. Kmen Central Flrida will cntinue t encurage Kmen grantees and ther cmmunity prviders t prvide printed materials (such as medical frms) in the native language f thse that they are serving. Whenever and wherever pssible, bth Kmen Central Flrida and the Kmen Oscela Breast Health Wrk Grup will wrk tward reducing barriers t breast health services. Wrking tgether cllabratively, Kmen Central Flrida and the Kmen Oscela Breast Health Wrk Grup will make the cmmunity aware f available pprtunities and services. 10 P age

Statement f Need Frm Partnerships t Ensure that all Patients Travel Cmpletely Thrugh the Cntinuum f Care Cuntywide Cntinuum f Care prtcls are needed t ensure patients travel apprpriately thugh screening, diagnsis, treatment, and fllw-up care in rder t receive the best care pssible. Pririty: Ensure that patients, regardless f whether r nt they have insurance, travel all the way thrugh the Cntinuum f Care withut being lst in the system. Objective #1: Beginning in January 2016, Kmen Central Flrida will cmmunicate via e-mail, phne calls, and/r face-t-face meetings with all Kmen-funded grantees/prviders in Oscela Cunty t encurage the develpment and/r utilizatin f systems t ensure that wmen get the next step f breast health treatment withut delay. Facilities with lng wait perids r wh cannt prvide the next phase f service shuld mve the patient alng the Cntinuum f Care by frming partnerships with ther facilities wh can. Objective #2: Beginning in January 2016, Kmen Central Flrida will cmmunicate via e-mail, phne calls, and/r face-t-face meetings with all Kmen-funded grantees/prviders in Oscela Cunty t develp internal and external partnerships and prcedures t ensure that services are nt stalled due t the patient s inability t pre-pay fr services. Withut having a designated, full-time Missins staff member, it will be an rganizatinal stretch t accmplish all f the items in the Missin Actin Plan n an annual basis. Hwever, by frming the Kmen Oscela Breast Health Wrk Grup, ideas will be able t be cllabratively determined and respnsibilities will be able t be shared. Please nte: A substantial prtin f this 2015 Cmmunity Prfile pertains t the depth and breadth f issues effecting underserved cnstituencies in Oscela Cunty, because the severity f current and future shrtcmings is mre prnunced in this cunty than in the ther eight cunties within Kmen Central Flrida s service area. Hwever, the same issues exist, in varying degrees, in all nine cunties served by Kmen Central Flrida. The Affiliate s hpe and intentin is t facilitate access t breast health educatin and services fr the uninsured and under-insured thrughut central Flrida, partnering with grantees t assure that n individual in need falls thrugh the cracks. Disclaimer: Cmprehensive data fr the Executive Summary can be fund in the 2015 Susan G. Kmen Central Flrida Cmmunity Prfile Reprt. 11 P age