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COMMUNITY PROFILE REPORT ©2011 New Orleans Affiliate of Susan G. Komen for the Cure®

2011

Disclaimer: 

The information in this Community Profile Report is based on the work of the New Orleans 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.

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Acknowledgements (1 page)

Instructions:

The New Orleans, Louisiana Affiliate of Susan G. Komen for the Cure® sincerely appreciates the time and effort that Community organizations and key individuals have given to provide the information included in the 2011 Community Profile.

Donna WilliamsLouisiana Breast & Cervical Health ProgramLouisiana State University School of Public Health

Mari NakayoshiLouisiana Breast & Cervical Health Program

Patricia AndrewsLouisiana Tumor Registry

Tracy Conlin DreilingAuthorCommunity Profile Team LeaderVolunteer

Lisa PlunkettCommunity Profile Team MemberExecutive DirectorSusan G. Komen for the Cure® New Orleans Affiliate

Lori BarthelemyCommunity Profile Team MemberBoard Secretary

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Table of ContentsExecutive Summary.........................................................................................................5

About Susan G. Komen………………………………………………………………………5 Introduction……………………………………………………………………………………5 Statistics and Demographic Review………………………………………………………..6 Health Systems Analysis…………………………………………………………………….8 Community Perspectives……………………………………………………………………8 Priority Setting Process……………………………………………………………………12 2011 – 2013 Affiliate Action Plan…………………………………………………………12Introduction.....................................................................................................................14

About Susan G. Komen…………………………………………………………………….14Affiliate History……………………………………………………………………………….14Organizational Structure…………………………………………………………………....14Description of the Service Area……………………………………………………………15Purpose of the Report………………………………………………………………………18

Breast Cancer Impact in the Affiliate Service Area………………………………………..20 Data Sources and Methodology Overview………………………………………………20 Overview Of Affiliate Service Area………………………………………………………..20 Selection of Priority Parishes……………………………………………………………...23 Conclusions…………………………………………………………………………………24Health Systems Analysis of Target Communities…………………………………………25 Overview of Continuum of Care…………………………………………………………..25 Data Sources and Methodology………………………………………………….............26 Themes from Health Systems Provider Surveys………………………………………..26 Assets and Partnerships…………………………………………………………………...27 Louisiana Breast and Cervical Health Program (LBCHP)……………………………..28 Conclusions…………………………………………………………………………………29Breast Cancer Perspectives in the Target Communities…………………………………30 Methodology………………………………………………………………………………..30 Conclusions…………………………………………………………………………………32Conclusions and Action Plan…………………………………………………………………33 Target Community Finding………………………………………………………………...33 Health System Conclusions……………………………………………………………….33 Community Perspectives Conclusions…………………………………………………...34 Priority Setting Process……………………………………………………………………34 2011 – 2013 Affiliate Priorities and Objectives………………………………………….35References……………………………………………………………………………………..37

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2011 Komen New Orleans Affiliate Community Profile

Executive Summary

About Susan G. Komen for the Cure®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® 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 a cure. Komen has more than 120 Affiliates around the globe working to meet unmet breast health needs. 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. For more information about Komen for the Cure®, breast health or breast cancer visit www.komen.org or call 1-877-Go-Komen.

IntroductionThe Susan G. Komen for the Cure® New Orleans Affiliate was founded in 1992 by Patricia C. Denechaud and the late Dr. Merv Trail. The New Orleans Affiliate shares the common mission of other Affiliates to eradicate breast cancer as a life threatening disease by advancing research, education, screening and treatment.

New Orleans is the Southeastern tip of the state of Louisiana. It is the largest city in Louisiana and is the center of the largest metropolitan area in Louisiana, the Greater New Orleans Metropolitan Area. The New Orleans Affiliate serves the Greater New Orleans Metropolitan Area. The statistical area includes seven parishes: Orleans, Jefferson, St. Bernard, St. John the Baptist, St. Charles, Plaquemines and St. Tammany. Washington Parish is added into the combined statistical area.

The first Susan G. Komen for the Cure New Orleans Race for the Cure® was held in New Orleans in 1995. The Race quickly became the major fundraising event for the Affiliate with participation and community support growing each year. In 2010, The New Orleans Race for the Cure® set a new record of 10,500 participants. The Race Committee has set a goal of 15,000 participants for the upcoming 2011 Race. The Affiliate’s grant program was initiated in 1995 and to date has awarded $2,904,667. In 2011 a total of $514, 177.00 has been given in Community Health Grants. The New Orleans Affiliate is led by a volunteer Board of Directors (BOD) and an Executive Director (ED). The Affiliate’s ability to hire an ED and obtain office space in 2000 has significantly stabilized the Affiliate leadership and visibility in the community. Visibility within the community has paved the way for successful fundraising events such as the Summer Cure Chef’s Wine Dinner and the Salute to Survivors Annual Luncheon.

The overall purpose of the Susan G. Komen for the Cure® Community Profile is to assure that the mission and non-mission work of the Affiliate is targeted and non-

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duplicative. A quality Community Profile helps the Affiliate to understand the state of breast cancer in its service area. The Community Profile assists the Affiliate to establish focused granting priorities, establish focused education activities, drive public policy efforts, strengthen/increase partnerships and sponsorships and establish direction for marketing and outreach activities.

Statistics and Demographic ResultsA variety of data sources was used to prepare the 2011 New Orleans Affiliate Community Profile (CP). Parish level demographic estimates were obtained from Thompson Reuters. Incidence and mortality rate estimates for zip codes were also obtained from Thompson Reuters as well as from the Louisiana Breast and Cervical Health Program. Parish level 2009 population estimates were available from the U.S. Census Bureau. Other demographic data were obtained from the Census Bureau’s American Community Survey 2007 and the 5 year estimates (2005-2009). The U.S. Census Bureau created these estimates to be compared to 2000 data for a view of demographic changes in the New Orleans Region that was greatly impacted by Hurricane Katrina in 2005. Data on parish level incidence and mortality rates (2003-2007) were collected from the National Cancer Institute’s State Cancer Profiles website (www.statecancerprofiles.cancer.gov).

The Susan G. Komen New Orleans Affiliate serves eight parishes. These parishes make up the statistical area of the Greater New Orleans Metropolitan Area. The total population of the Greater New Orleans Metropolitan statistical area is 1,190,632. Jefferson Parish and Orleans Parish account for two-thirds of the total population. Females account for little over one half of the total population at 51.9%. Sixty percent of the population is white, thirty-four percent are African American and six percent is Hispanic/Latino. In Orleans Parish, the second most populated parish, African Americans account for sixty percent of the population, thirty percent are white and five percent are Hispanic/Latino. The median household income in the Greater New Orleans Metropolitan Area is $46, 496 with 16.2 % of the population living below the poverty level. (U.S. Census Bureau- American Community Survey 5 year estimates 2005-2009)

The aftermath of Hurricane Katrina in 2005 created more health disparities in the New Orleans greater Metropolitan area health care system. Charity Hospital, the region’s principal health care service provider to uninsured residents in the area, was damaged beyond repair and failed to reopen. According to the Kaiser state health facts.org, 18% of Louisiana’s population is uninsured, which is above the national average. Approximately 25% of non elderly adults (ages 18-64) are uninsured. This is much higher than the national average of 17% for this age group (1Health Challenges for People of New Orleans).

The burden of having no insurance and the difficulties accessing needed care fall unequally across the community. Vulnerable populations in the region have an even higher rate of uninsured individuals. In the Greater New Orleans Area, about one –

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third of adults (35%) are economically disadvantaged, a composite measure used to identify those who may be facing economic hardships. Thirty percent are African American (a group in New Orleans that has a long history of disparities in health coverage and access), and nearly one in ten (9%) area residents previously relied on the now defunct Charity Hospital for health care. These former Charity users were more prevalent in Orleans Parish than throughout the entire region. A profile of the population who formerly relied on Charity Hospital shows that the majority of this group was economically disadvantaged. Charity Hospital played an important role in delivering health care to those with limited resources. Two-thirds of former Charity users were African American. Following the closure of Charity Hospital, this is a group that that can be expected to face particular challenges accessing health services post-Katrina (Health Challenges for the People of New Orleans).

Breast cancer is the most frequently diagnosed cancer among women both nationally and in the state of Louisiana. The average annual incidence rate for white women in the United States (2003-2007) is 126.5. Southeast Louisiana white women have a slightly lower average of 123.7. However, African American women in Southeast Louisiana have a slightly higher average annual incidence rate of 119.7 over the US average of 118.3. Even more alarming are the higher rates of mortality for both African American and white women in Southeast Louisiana (38.2 and 25.2) in comparison to the United States average mortality rates (32.4 and 23.4). (US rates from the Surveillance, Epidemiology and End Results Program of the National Cancer Institute)

Data collected for the 2011 Community Profile reveals that several of the eight parishes served by the Komen New Orleans Affiliate have higher average annual mortality rates for both African American and white women. Parishes that have higher rates for African American women are Jefferson Parish, Orleans Parish and St. John the Baptist. White women have higher than average annual mortality rates in Jefferson Parish, Orleans Parish, St. Bernard and Washington Parish.

When looking at Mortality rates, one must consider stage of diagnosis. Stage of diagnosis is important when looking at the breast health of a community. It is one of the most important factors contributing to mortality and in determining the prognosis and treatment options for breast cancer. Unfortunately, several parishes in the Affiliate service area have high averages of late stage diagnosis, in particular for the African American women. These parishes are St. Charles Parish (40.6%), St. John the Baptist (44.1%), St. Tammany Parish (42.9%) and Washington Parish (52.9%).

Of all the eight parishes served, Washington Parish has the highest percentage of uninsured women with 29.6% being uninsured, Orleans follows with 28.7% of women uninsured. St. John the Baptist has 18.6% uninsured, St. Charles has 13.8% and St. Tammany has 12.2% of uninsured females. Washington Parish and Orleans Parish also have the highest populations of individuals living below the poverty level. Orleans Parish has 23.7% living below the poverty level and Washington Parish has 19.4%. (US Census Bureau)

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The Community Profile team considered all data which included Average Annual Mortality rates, late stage diagnosis, high rates of uninsured females and high poverty levels when prioritizing parishes. Considering all of the data, six of the eight parishes were chosen as top priorities for the 2011 Community Profile. They are Orleans Parish, Jefferson Parish, St. John the Baptist, St. Tammany Parish, St. Charles Parish and Washington Parish. The data also suggests that African American women are at a greater disadvantage in many of the parishes due to economic, education and health care access; therefore, African American women will also be a top priority for the New Orleans Affiliate. Additional specifics regarding these variables are found in greater detail in the CP section on Breast Cancer Impact in the Affiliate Service Area.

Health Systems AnalysisSeveral methods were used to gather health systems data for priority parishes. These included an updated inventory of programs and services, asset mapping and provider surveys. A Provider survey questionnaire was developed using the Continuum of Care model with questions specific to access, screening, diagnosis, treatment and aftercare. This gives an overview of how women in the communities are able to move through the health care system. These providers were selected because they are vital leaders within these populations considered economically and medically disadvantaged. They play key roles in assisting these patients in obtaining quality health care. Some are oncologists, radiologists and surgeons serving the breast health patient. Others are support staff in clinics and local hospitals who work directly with the breast health patient. Several work with the Louisiana State University School of Public Health and the Louisiana Cancer Registry.

The data gathered with the help of the provider surveys describes common gaps and barriers that patients face when seeking breast health information, screening and treatment. Some common themes emerged from the data gathered. The most common is that patients living outside of Orleans Parish have little or no access to free mammography screening. This inhibits the uninsured from getting proper screening. Providers also suggest that the Emergency Medicine system is overtaxed due to lack of system support for uninsured. Many of the patients seeking breast health care are using the Emergency Departments as their primary provider of health care.

Providers acknowledge that they lack the funding and staff support to properly reach and educate the underserved about breast health. This is particularly true for the African American and low income patients, thus limiting the continuum of care for these patients. Many uninsured women diagnosed with breast cancer are at a disadvantage for treatment options if they live outside of Orleans Parish. Extensive travel and limited support from family and friends for transportation is a huge barrier for these patients. These barriers inhibit these patients from proper care and navigation of the continuum of care.

Community PerspectiveAnalysis of the breast health care in the community involved looking at a map of the region. Locations of area hospitals and clinics were documented within each

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community. Only those clinics that offer breast health education, screening or treatment were listed. Both Komen funded and non-Komen funded clinics were mapped.

When assessing the breast health needs of the New Orleans Affiliate service area, it is important to look at the entire Continuum of Care that was mentioned in the above section: Health Systems Analysis. In order to correctly navigate the Continuum of Care (COC), a patient needs to have adequate access to proper screening. Along with proper screening, a patient must be educated about breast health. If there is an abnormality found during screening, the patient must get guidance for further testing. Once the additional testing is completed, a patient may be given a breast cancer diagnosis. This patient must be able to navigate the system to get the proper treatment options. A patient should be made aware of any clinical trials that she may be eligible to participate in without cost to the patient. During and after treatment it is imperative that the patient seek follow-up care to assure the best possible prognosis. See Figure 1. There are many reasons a patient may not stay in the COC. The committee must consider these reasons and help create solutions to keep patients in the Continuum of Care.

Figure 1: The Continuum of Care (COC)

To better understand the COC in the communities served by the Komen New Orleans Affiliate, the Community Profile team gathered more qualitative data by surveying women in several of the priority parishes. Not all of the women surveyed are considered the underserved. However, most are uninsured and economically disadvantaged. These patients were provided a survey. The questionnaires contained

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twelve questions about general breast health. A second section was added with seven questions to be answered by breast cancer survivors only. The questionnaires were given to the women by the clinic supervisors. Four clinics agreed to participate. Each of the clinics is located in priority parishes. Two are in Orleans parish, one in St. Charles Parish and one in Washington parish. The clinics were chosen because of the patient populations that they serve as well as the parish statistics on late stage diagnosis and high average annual mortality rates. A large portion of the participants in these clinics are African American.

A total of 48 surveys were given to patients. Twelve patients were given the questionnaires in each clinic. The response rate was lower than expected, with fewer than half completing the survey. Twenty forms were completed.

Some examples of the general breast health questions are as follows:What does breast health mean to you?What does Susan G. Komen mean to you?Who are the people that provide breast health information in this community?Where is someone most likely to go for breast health information?What keeps women in this community from getting proper breast health information?Do you regularly get screened?Do you know if you have a family history of breast cancer?

Responses by the patients proved to have similar themes. One such response was that many of the women surveyed felt that lack of money, fear and lack of education are the most common reasons that women in their communities don’t get proper breast health information and early screening. Most women stated that they have very limited information about breast health and family history. In fact, many stated their fear that talking about breast cancer and getting regular screening would increase their chances of having a breast cancer diagnosis. There seems to be a cultural fear that if they don’t look for it – they won’t end up with it.

Many of the underserved have common misconceptions about breast health. Cultural barriers negatively impact proper screening, diagnosis stage and time to treatment. Many African Americans and Hispanic/Latino’s are unaware of their family history. The subject of breast health is taboo in some of their cultures and older generations have been reluctant to discuss breast health with the younger generations. Once again, it is clear that lack of funds and staff to properly reach and educate these patients has put the underserved at a breast health care disadvantage. It is imperative that we reach and educate the women of this generation to better serve their breast health needs. More funds and outreach programs would generate more awareness and proper access to care.

Only two of the women that completed the community survey had a clear understanding of Susan G. Komen for the Cure®. Many of the women stated that they do not get proper screening due to lack of transportation and child care. Most of the women listed

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the clinic as their main provider for health care, whereas some responded that they often visit an Emergency Department for health care.

The second section of the survey required that only breast cancer survivors answer. Some example questions in this section were as follows:

Were you advised of your treatment options?What stage was the cancer detected?What stage was the cancer when treatment began?

No one that completed these surveys was a survivor.

An additional set of surveys was sent via the internet or fax machine. These were sent to key informants. They were chosen because they were respected members of the African American community and the breast health community. Several of the key informant questionnaires were sent to breast cancer survivors. A total of twelve key informant surveys were completed.

The key informant questionnaires described the women in their community least likely to be getting regular screenings as uninsured women and minority populations. All of these women were aware of Susan G. Komen for the Cure®. These women surveyed listed transportation and money as the biggest barriers for women trying to access adequate breast health care. Key informants also stated a need for more state funded programs in the Greater New Orleans Metropolitan Area.

The breast cancer survivors stated that there was a need for better breast health education for the front of office staff. All felt there is a need for state funded navigation programs. For these survivors, navigating the system was as overwhelming as the diagnosis. All stated that they received adequate and timely treatment; however, all agreed that there is a need for more treatment facilities for the uninsured. These women were all diagnosed with screening. None were eligible for clinical trials at the time of diagnosis.

All of the information gathered through these questionnaires and surveys helps to explain some of the disparities in access to breast health care in the Greater New Orleans Metropolitan Area. We know from our data that African American women are a large percentage of the Greater New Orleans Metropolitan Area population. It is documented that African American women in Southeast Louisiana as well as the target parishes have higher than average annual mortality rates. Many are uninsured and economically disadvantaged. The surveys tell us that these women skip regular screenings due to lack of money, fear of the unknown, lack of education and preconceived cultural beliefs.

Although there are many hospitals and clinics in the target parishes for insured patients, there are too few places for the uninsured and economically disadvantaged to access proper breast health care and treatment. The options that do exist are

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disproportionately located. Most of the uninsured women have to travel to Orleans Parish for free mammograms and treatment. With the closure of the Charity system in 2005, locations in Orleans parish are even more limited.

Priority Setting ProcessThe demographic and statistical information collected along with the qualitative information from the surveys revealed that women in six parishes in the Greater New Orleans Metropolitan Statistical Area are at the greatest risk for falling out of the Continuum of Care. These parishes are: Orleans Parish, Jefferson Parish, St. John the Baptist, St. Charles Parish, St. Tammany Parish and Washington Parish. Overall, African American women in these parishes are at an even greater risk. They are being diagnosed at late stages and have the highest rates of mortality. It is documented that a large percentage of African American women in the Komen New Orleans Affiliate service area are uninsured and economically disadvantaged.

2011 – 2013 Affiliate Action PlanBased on demographic, statistical and qualitative information collected for this report, the Komen New Orleans Affiliate has chosen three priorities. The timeline for these priorities will be August 1, 2011 to March 31, 2013. While the three priorities will apply to all eight parishes in the New Orleans Affiliate service area, special emphasis will be given to the six target parishes: Orleans, Jefferson, St. John the Baptist, St. Charles, St. Tammany and Washington. The demographics of these parishes will be looked at more closely in the Conclusion section of the Community Profile.

Priority 1: Provide educational outreach programs specifically for African American women that will help remove cultural misconceptions, eliminate fear and increase breast health awareness. Objective 1: Maintain partnership with Xavier University, Southern University and Dillard University to provide culturally appropriate breast health messages to the students and faculty of the Universities. Education and information is the key to breaking the cultural cycle of not getting screened for fear of diagnosis. Emphasis should be on early detection. Objective 2: The Affiliate will participate in University health fairs and partner with school health clinics, sororities and fraternities to promote breast health awareness. Objective 3: The Affiliate will partner with local churches and pastors to educate its congregations and build trust with and awareness of Susan G. Komen the Cure® New Orleans Affiliate. Objective 4: Maintain partnership with The New Orleans Saints, Hornets and Zephyrs organizations to provide culturally appropriate breast health messages at charity events, pre-game events and half-time events. Objective 5: Coordinate “Pink” events with community hair salons to promote culturally appropriate breast health messages.

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Priority 2: Increase Breast health awareness, educational outreach, access to screening services for the uninsured and underserved. Objective 1: Susan G. Komen for the Cure® New Orleans Affiliate will continue to partner with the Louisiana Breast and Cervical Health Program (LBCHP) and advocate for additional state funding for uninsured women in Southeast Louisiana. Objective 2: The Affiliate will continue to promote relationships with state legislators to advocate for federal breast cancer access legislation. Objective 3: We will continue to partner with and establish a presence in the local health clinics, such as St. Thomas Community Health Center, LSUHSC clinic, LSU-Bogalusa Medical Center, West Jefferson Women’s imaging and Breast Center and the St. Charles Community Health Center. Objective 4: The Affiliate will continue to work with grantees and seek out new grantees that could provide patient navigation, allow for additional screening and transportation to and from screening and treatment. Objective 5: We will continue to participate in statewide Lobby Day and National Lobby Day for Komen to target specific legislators for support for more funding for patient navigation and transportation.

Priority 3: Increase Awareness of Susan G. Komen for the Cure® New Orleans and the services that are provided by the Affiliate. Objective 1: Susan G. Komen for the Cure® New Orleans will work with community and civic organizations along with leaders in each community of Jefferson Parish, Orleans Parish, St. Charles Parish, St. John the Baptist Parish, St. Tammany Parish and Washington Parish to conduct and partner with existing health fairs and community events. Objective 2: We will expand our existing partnerships with television, radio and on-line community partners. Ideally, community awareness would be increased by having a corporate partner or sponsor to focus on public awareness of both Susan G. Komen New Orleans and breast health awareness. Objective 3: Continue to partner with health and breast health clinics, hospitals and schools to attend all health fairs and events providing accurate breast health awareness literature. Objective 4: We will continue our partnerships with the Mary Bird Perkins Cancer Center in Covington, the Mammography Breast Center in Mandeville, the Center for Restorative Breast Surgery in New Orleans, M.D. Anderson at East Jefferson General Hospital in Jefferson Parish, the Ochsner Breast Center in Jefferson and the Louisiana Cancer Registry.

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Introduction

About Susan G. Komen for the Cure®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® 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 cure. Komen has more than 120 Affiliates around the globe working to meet unmet breast health needs. 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. For more information about Komen for the Cure, breast health or breast cancer visit www.komen.org or call 1-877-Go-Komen.

Affiliate HistoryThe Susan G. Komen for the Cure® New Orleans Affiliate was founded in 1992 by Patricia C. Denechaud and the late Dr. Merv Trail. The New Orleans Affiliate shares the common mission of other Affiliates to eradicate breast cancer as a life threatening disease by advancing research, education, screening and treatment.

New Orleans is the Southeastern tip of the state of Louisiana. It is the largest city in Louisiana and is the center of the largest metropolitan area in Louisiana, the Greater New Orleans Metropolitan Area. The New Orleans Affiliate serves the Greater New Orleans Metropolitan Area. The statistical area includes seven parishes: Orleans, Jefferson, St. Bernard, St. John the Baptist, St. Charles, Plaquemines and St. Tammany. Washington Parish is added into the combined statistical area.

The first Susan G. Komen for the Cure New Orleans Race for the Cure® was held in New Orleans in 1995. The Race quickly became the major fundraising event for the Affiliate with participation and community support growing each year. In 2010, The New Orleans Race for the Cure® set a new record of 10,500 participants. The Race Committee has set a goal of 15,000 participants for the upcoming 2011 Race. The Affiliate’s grant program was initiated in 1995 and to date has awarded $2,904,667. In 2011 a total of $514, 177.00 has been given in Community Health Grants. The New Orleans Affiliate is led by a volunteer Board of Directors (BOD) and an Executive Director (ED). The Affiliate’s ability to hire an ED and obtain office space in 2000 has significantly stabilized the Affiliate leadership and visibility in the community. Visibility within the community has paved the way for successful fundraising events such as the Summer Cure Chef’s Wine Dinner and the Salute to Survivors Annual Luncheon.

Organizational StructureThe Susan G. Komen for the Cure® New Orleans Affiliate is led by a volunteer Board of Directors (BOD) and an Executive Director (ED) – Lisa Plunkett. There are currently

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nine positions designated on the BOD. The staff consists of one part-time Affiliate Coordinator – Carin Evans.

Figure 1: Susan G. Komen for the Cure® New Orleans Affiliate Board of Directors

Description of the Service AreaNew Orleans is the Southeastern tip of the state of Louisiana. It is the largest city in Louisiana and is the center of the largest metropolitan area in Louisiana, the Greater New Orleans Metropolitan Area, which is the service area of the New Orleans Affiliate. The Greater New Orleans Metropolitan statistical area includes seven parishes: Orleans Parish, Jefferson Parish, St. Bernard Parish, St. John the Baptist Parish, St. Charles Parish, Plaquemines Parish and St. Tammany Parish. Washington Parish is added into the combined statistical area. Geographically, the Greater New Orleans Metropolitan Area is described using the following terms: East Bank, West Bank, North shore, and River Parishes. The East Bank term refers to those parishes east and north of the Mississippi River and includes the northern portion of Jefferson Parish, the northern portion of Orleans Parish and St. Bernard Parish. The West Bank term refers to those parishes west and south of the Mississippi River and includes the southern portion of Jefferson Parish, the southern portion of Orleans Parish and the western portion of Plaquemines Parish. St. Tammany and Washington Parish are the North shore parishes on the northern shore of Lake Pontchartrain. The River Parishes – St. Charles and St. John the Baptist- are located along the Mississippi River between New Orleans and Baton Rouge, Louisiana. Figure 2 illustrates the Map of Susan G. Komen Louisiana Affiliates.

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PresidentFrank Liantonio

SecretaryLori Barthelemy

ReRe AvegnoJoseph Briand

Hon. Paula BrownOliver Sartor, MD

TreasurerChristina Chifici

Allene ThallerElly Zakris, MD

Figure 2: Map of Susan G. Komen Louisiana for the Cure ® Louisiana Affiliates

Tourism is one of the Region’s major industries. Important sectors of the economy include oil and gas industries, large ports for cargo handling, aerospace manufacturing, seafood exporting, and several universities and hospitals. The economic landscape of the region has been damaged and is still in recovery due to Hurricane Katrina in 2005 and the BP oil spill in 2010.

The Susan G. Komen New Orleans Affiliate serves eight parishes. These parishes make up the statistical area of the Greater New Orleans Metropolitan Area.

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The total population of the Greater New Orleans Metropolitan statistical area is 1,190.632. Jefferson and Orleans Parish account for two-thirds of the total population. The population is sixty percent white, thirty-four percent African American and six percent Hispanic/Latino (see graph 1). In Orleans Parish, the second most populated parish, African Americans account for 63% of the population, 31.8% are white and 4.3% are Hispanic/Latino (see table 1). Females account for over half of the population (51.9%) in the Greater New Orleans Metropolitan Area. The median household income is $46,496 with 16.2% of the population living below the poverty level (U.S. Census Bureau – American Community Survey 2005 -2009).

The aftermath of Hurricane Katrina in 2005 created more health disparities in the New Orleans greater Metropolitan area health care system. Charity Hospital, the region’s principal health care service provider to uninsured residents in the area, was damaged beyond repair and failed to reopen. According to the Kaiser state health facts.org, 18% of Louisiana’s population is uninsured, which is above the national average. Approximately 25% of non elderly adults (ages 18-64) are uninsured. This is much higher than the national average of 17% for this age group (2Health Challenges for People of New Orleans).

Vulnerable populations in the region have an even higher rate of uninsured individuals. Thirty-five percent of the residents in the area are economically disadvantaged and 34.2% are African American. Orleans Parish alone has an even higher percentage of economically disadvantaged and African American individuals, 43% and 63% respectively. These groups relied heavily on the Charity Hospital System for medical care before the storm. Two-thirds of the population served by Charity was African American, over 80% were economically disadvantaged, and more than half were uninsured. With the closing of the primary medical resource for the uninsured and the relocation of several physicians, 27% of residents and 54% of uninsured residents have no usual source of care other than the emergency department (ED). Furthermore, 37% of African Americans and the economically disadvantaged have no usual source of care other than the ED. All of these percentages are above the national average (14%) for no usual source of medical care. The majority of the individuals in the service area are between the ages of 18-60 (Health Challenges for the People of New Orleans).

Graph 1: Estimated 2009 Parish Population – US Census Bureau

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Jefferson

Orleans

St. Tammany

St. Charles

St. John the Baptist

Washington

St. Bernard

Plaquemines

0 100,000 200,000 300,000 400,000 500,000

Series 1

Table 1: White, African American and Hispanic/Latino population percentages by parish.

White African American Hispanic/LatinoGreater New Orleans Metro Area

59.9 34.2 5.9

Orleans Parish 31.8 63 4.3Jefferson Parish 65.3 26.4 9.1St. Charles Parish 70 26.8 3.8St. John the Baptist 48 49.1 4.4St. Tammany Parish 84.2 11.4 3.6Washington Parish 67.2 31.4 1.3Plaquemines 71.1 23.7 3.3St. Bernard Parish 81.6 13 7.6

Purpose of the ReportSusan G. Komen for the Cure’s® promise is to save lives and end breast cancer forever by empowering people, ensuring quality care for all and energizing science to find the cure. To help meet this promise, the Susan G. Komen for the Cure’s New Orleans Affiliate uses information obtained through a Community Profile report (CP).

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The overall purpose of the Community Profile is to assure that the mission and non-mission work of the Affiliate is targeted and non-duplicative.

The CP is a community needs assessment, specifically looking at breast cancer in the eight parishes served by the Komen New Orleans Affiliate. It will help the Affiliate to:

1. Establish granting priorities by helping the Affiliate to better understand which breast health needs have been unmet in each parish and seek out and partner with organizations and providers that can help meet these needs.

2. Establish focused education activities within the communities that have limited or no access to breast health awareness information and/or Susan G. Komen for the Cure®.

3. Drive public policy efforts for federal and state funding for patient navigation, low or no cost screening and transportation to and from treatments.

4. Strengthen/increase partnerships and sponsorships and establish direction for marketing and outreach activities to increase community awareness of Susan G. Komen for the Cure® and breast health awareness in the eight parishes served by the New Orleans Affiliate.

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Breast Cancer Impact in the Affiliate Service Area

Data Sources and Methodology OverviewA variety of data sources was used to prepare the 2011 New Orleans Affiliate Community Profile. Parish level demographic estimates were obtained from Thompson Reuters. Incidence and mortality rate estimates for zip codes were also obtained from Thompson Reuters as well as from the Louisiana Breast and Cervical Health Program. Parish level 2009 population estimates were available from the U.S. Census Bureau. Other demographic data were obtained from the Census Bureau’s American Community Survey 2007 and the 5 year estimates (2005-2009). The U.S. Census Bureau created these estimates to be compared to 2000 data for a view of demographic changes in the New Orleans region that was greatly impacted by Hurricane Katrina in 2005. Data on parish level incidence and mortality rates (2003-2007) were collected from the National Cancer Institute’s State Cancer Profiles website (www.statecancerprofiles.cancer.gov).

Data regarding mammogram screenings was provided by LSU School of Public health from the Behavioral Risk Factor Surveillance System (BRFSS). Information pertaining to parish level incidence and mortality and late stage diagnosis was provided by the Louisiana Cancer Registry.

Overview of the Affiliate Service AreaBreast cancer is the third most frequently diagnosed type of cancer in the state of Louisiana, accounting for 14% of all diagnosed cancers. It is the most commonly diagnosed invasive cancer among women in Louisiana, accounting for 29% of all cancers in white women and 31% of all cancers in African American women. It is the most common cause of cancer death among African American women in the state and the second most common cause of death from cancer among white women in the state.

According to the National Cancer Institute, white women in the U.S. have an average annual incidence rate per 100,000 of 126.5 and African American women have a rate of 118.3. In southeast Louisiana the rate for white women is 123.7 and 119.7 for African American women. Plaquemines Parish, St. John the Baptist and St. Tammany Parish white women have average annual incidence rates higher than the national average – 130.6, 134.2 and 135.5. African American women in Jefferson Parish, Orleans Parish, Plaquemines Parish and St. Bernard Parish have average annual incidence rates that are also higher than the national average with rates of 123.4, 142.0 and 133.6 (see Graph 2).

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Graph 2: Incidence & Mortality of Female Breast Cancer by parish, 2004-2007

Jefferson Parish has the highest case counts for five years (2003-2007) for white women (1,503) and Orleans Parish has the highest case counts for African American women (856 cases).

Mortality rates for women of all races are decreasing nationally, however, the mortality Rate for African American women in Louisiana is still well above the national average. The average annual mortality rate for African American women in the U.S. is 32.4.African American women in Southeast Louisiana have an average annual mortality rate Of 38.2. The average annual mortality rate for white women in the U.S. is 23.4. In southeastern Louisiana, the average annual mortality rate is 25.2. There are several parishes within the Greater New Orleans Metropolitan Statistical area that have average annual mortality rates that are higher than the national average for both white and African American women. The parishes with higher than average rates for white women are Jefferson Parish (26.0), Orleans Parish (26.8), St. Bernard Parish (25.6) and Washington Parish (27.9). The parishes with higher than average rates for African

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American women are Jefferson Parish ( 39.3), Orleans Parish (38.3) and St. John the Baptist (59.4) (see Graph 2).

According to the National Cancer Institute, the greatest number of deaths from breast cancer in Southeast Louisiana is 295 for white women in Jefferson Parish. St. Tammany Parish has 119. Orleans Parish has the highest number for African American women with 237 deaths. These numbers are from five years, 2003-2007.

When looking at mortality rates, one must consider stage of diagnosis. Stage of diagnosis is important when looking at the breast health of a community. It is one of the most important factors contributing to mortality and in determining the prognosis and treatment options for breast cancer. Unfortunately, several parishes in the Affiliate service area have high averages of late stage diagnosis, in particular for the African American women. These parishes are St. Charles Parish (40.6%), St. John the Baptist (44.1%), St. Tammany Parish (42.9%) and Washington Parish (52.9%). (see graph 3).Graph 3 illustrates the comparisons of early and late stage diagnosis percentages in the U.S., the state of Louisiana, Southeast Louisiana and the eight parishes served by the Komen New Orleans Affiliate. This data was provided by the Louisiana Breast and Cervical Health Program.

Graph 3: Stage at Diagnosis for Female Breast Cancer, 2004-2007

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Selection of Priority Parishes

Based on review of breast cancer statistics and parish demographics, the Community Profile team, with approval from the Board of Directors, has chosen six parishes for further study. These parishes are Jefferson Parish, Orleans Parish, St. Tammany Parish, St. John the Baptist Parish, St. Charles Parish and Washington Parish.

Jefferson ParishJefferson Parish has the largest female population (228,474) compared to the other parishes in the Greater New Orleans Metropolitan Statistical Area. The Jefferson Parish incidence rate for white women is lower than the national average at 121.3, however, African American women have a higher than average incidence rate of 123.4. More alarming is that both African American and white women have average annual mortality rates higher than the U.S. average. African American women have a rate of 39.3 and white women have a rate of 26. According to the Louisiana Cancer Registry, white women have a death count for five years (2004-2007) of 295 which is the highest in Southeast Louisiana. Twenty-nine percent of white women in Jefferson and 31% of African American women are diagnose at a late stage.

Orleans ParishOrleans Parish is sixty-percent African American. The female population is 174,334. African American women in Southeast Louisiana have higher rates of mortality associate with breast cancer than the U.S. African American women in Orleans Parish are being diagnosed at a later stage 33.59% of the time. The average annual mortality rates for both African American and white women in Orleans Parish are above the national average at 38.3 and 26.8 (see graph 2). The death count for five years (2003-2007) for African American women in Orleans Parish is the second highest in Southeast Louisiana at 237. The percentage of individuals living below the poverty level is one of the highest in the Greater New Orleans Metropolitan Area at 23.4%. Prior to 2005, many of these residents relied on the Charity Hospital Health System to meet its medical needs. With the closing of Charity many residents lack the funds, education and resources needed to access proper health care.

St. Tammany ParishSt. Tammany Parish is called the North shore. St. Tammany Parish has a female population of 114,960. The average annual incidence rates in St. Tammany are lower than the U.S. for African American women (115.2) but higher for white women (135.5). Both African American and white women have average annual mortality rates lower than the U.S. St. Tammany Parish is predominantly white accounting for 84.2% of the total population. St. Tammany has the second highest five year (2003-2007) death count due to breast cancer for white women in Southeast Louisiana at 119. The 2008 Behavioral Risk Factor Surveillance System reported that women in St. Tammany Parish 40+ have had mammograms in the past two years at a rate lower than the Louisiana average of 74.2. The rate for St. Tammany parish was 68.6.

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St. Charles ParishSt. Charles Parish is one of the River Parishes. St. Charles Parish has a female population of 26, 297. Seventy percent of the population is white. African American and white women in St. Charles Parish have lower average annual incidence and mortality rates than the U.S.; however, African American women in St. Charles are diagnosed at a late state 40.62% of the time.

St. John the Baptist ParishSt. John the Baptist Parish is also a River Parish. The female population of St. John the Baptist is 24,119. White people account for 48% of the population with African Americans accounting for 49.1%. The average annual incidence rate for white women is above the national average at 134.2, whereas African Americans fall slightly below at 117.0. St. John the Baptist African American women have an average annual mortality rate that is alarmingly higher than the United States – 59.4 vs. 36.31 (see graph 2). This rate is much higher than the Southeast Louisiana rate of 38.2. African American women are being diagnosed at a late stage of 44.07% of the time.

Washington ParishWashington Parish is located on the North shore. The female population is 22,881. Whites account for 67.2% of the population with African Americans accounting for 31.4%. Both African American and white women have lower than national average annual incidence rates. White women have a higher average annual mortality rate of 27.9% (see graph 2). African American women have a lower than national average annual mortality rate, however, they are receiving a late stage diagnosis at a much higher rate than the national and state average with a rate of 52.9%. Washington Parish has a higher percentage of individuals living below the poverty level. The percentage is 24.7%, 18.5 % for white residents and 37.2% for African American residents.

ConclusionsThe Community Profile team evaluated all of the data collected. Parish level population breakdowns, economic factors – such as median household income, below poverty statistics and insurance coverage – and breast cancer statistics all played an important role in setting priority targets for further study. National, state and regional trends were compared to parish trends for average annual incidence and mortality rates, as well as percentages of late stage diagnosis.

While the statistical information gathered and evaluated help to identify the target parishes, they do not fully address the needs and gaps present in accessing proper breast health within the Affiliate service area. In order to better understand these needs, the Continuum of Care will be looked at further in the next section. We will look at how the parishes and communities of interest are meeting the needs of residents when looking at breast health care.

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Health Systems Analysis of Target Communities

Overview of Continuum of CareWhen assessing the breast health care of the New Orleans Affiliate service area, it is important to look at the entire Continuum of Care –COC (see figure 3). The COC is a tool that helps assess how a patient moves through the health care system. In order for her to successfully navigate the Continuum of Care, a patient needs to have adequate access to proper screening. A patient must also be educated about breast health. If there is an abnormality found during screening, she must get guidance for further testing. Once the additional testing is complete, a patient may be given a breast cancer diagnosis. This patient must be able to navigate the system to get the proper treatment options. A patient should be made aware of any clinical trials that she may be eligible to participate in without cost to the patient. During and after treatment it is imperative that the patient seek follow-up care to assure the best possible prognosis. There are many reasons a patient may not stay in the COC. The Community Profile team must consider what these reasons may be and help create solutions to keep patients in the Continuum of Care.

Figure 3: The Continuum of Care (COC)

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Data Sources and MethodologyThe Community Profile team used many different methods to gather information pertaining to health care and the breast health providers in the priority parishes. These methods included asset mapping, extensive internet searches, an updated inventory of programs and services, working with the Louisiana State School of Public Health and provider questionnaires and surveys. The Provider survey questionnaire was developed using the Continuum of Care model with questions specific to access, screening, diagnosis, treatment and aftercare. These providers were selected because they are vital leaders within the populations considered economically and medically disadvantaged. They play key roles in assisting these patients in obtaining quality health care. Some are oncologists, radiologists and surgeons serving the breast health patient. Others are support staff in clinics and local hospitals who work directly with the breast health patient. Several work with the Louisiana State University School of Public Health and the Louisiana Cancer Registry. The survey questionnaires were filled out as an interview over the telephone, filled out and faxed back into the team or sent via the internet. The data gathered with the help of the provider surveys describes common gaps and barriers that patients face when seeking breast health information, screening and treatment. Some common themes emerged from the data gathered.

Themes from Health Systems Provider Surveys

Screening/Diagnosis – The most common is that patients living outside of Orleans parish have little or no access to free mammography screening. This inhibits the uninsured form getting proper and timely screenings. Clinics located in St. Tammany, St. Charles, Jefferson, Washington and Orleans Parish provide free breast exams, however only a few offer free mammograms to those who qualify. Orleans Parish residents do have two clinics that provide free mammography and screenings; however, due to a large number of indigent and uninsured patients in the area, these clinics are extremely busy. Providers also suggest that the Emergency Medicine System is overtaxed due to lack of system support for the indigent and uninsured. Many of the patients seeking breast health care are using the Emergency Departments as their primary provider of health care. Many of the providers listed these patients as those who are not getting proper breast health screenings.

Treatment – Patients seeking treatment in Washington, St. John and St. Charles Parish have to travel to receive treatments such as radiation and chemotherapy. Patients who have no insurance have to travel to Orleans Parish. Extensive travel and limited support from family and friends for transportation present huge difficulties for these patients. These barriers prevent patients from accessing proper breast health care and successfully completing the Continuum of Care.

Outreach and Education – Providers acknowledge that they lack the funding and staff support to properly reach and educate the underserved about breast health. This is particularly true for the African American and low income patients, thus limiting their ability to navigate the COC. All of the clinics provide breast health education materials but find it difficult to reach community members outside of the clinic. Limited funding

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and support makes it nearly impossible for them to staff breast health clinics or outreach programs. All would welcome partnerships with Susan G. Komen for the Cure® for educational and outreach support. Follow-up/Aftercare – Providers all agreed that the one of the biggest problems that they have with the patients is compliance and follow-up care. Many stated that in particular indigent clinic patients very seldom comply with screening and treatment recommendations. Providers suggest lack of education and cultural fears as barriers keeping patients from seeking follow up care.

Assets and PartnershipsOne of the advantages of researching breast health within the Affiliate service has been identifying and recognizing the wonderful assets and partnerships that exist within the Greater New Orleans Metropolitan Area. Several of the organizations are grantees that continue to provide much needed services for breast health awareness, screening and treatment.

Jefferson Parish▪M.D. Anderson at East Jefferson General Hospital ▪West Jefferson Medical Center’s imaging and Breast Care Center (free screenings for uninsured patients that meet criteria)▪West Jefferson Medical Center Outpatient Rehabilitation Department▪NOLA Group for the Advancement of Breast Restoration▪Ochsner Lieselotte Tansey Breast Center

Orleans Parish▪LSUHSC School of Public Health Breast and Cervical Health Program (free screenings)▪Leonard C. Thomas HOS Foundation▪Cancer Center of Greater New Orleans▪St. Thomas Community Health Center (free screenings)▪The Center for Restorative Breast Surgery▪Central City Health Clinic▪Daughters of Charity Health Center▪LSU Community Clinic▪Harry Thompson Center▪Cancer Association of New Orleans (CAGNO)▪LA Breast Cancer Task Force▪The Louisiana Cancer Registry

St. Tammany Parish▪Slidell Memorial Regional Cancer Center (free or reduced cost screenings)▪Mary Bird Perkins Cancer Center (free screenings)▪St. Tammany Parish Breast Center (free screening days)▪St. Tammany Parish Hospital Cancer Resource Center▪The Mammography Breast Center

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St. Charles Parish▪The St. Charles Community Health Center (free breast exams)

Washington Parish▪LSU-Bogalusa medical Center (free screenings)

The Susan G. Komen for the Cure® New Orleans Affiliate currently partners with several of the above organizations. Some are or have been grantees. The grants funds are allocated for purposes of education for residents, training for staff, provision of services including mammograms, diagnostic testing, case management, patient navigation and treatment.

The Louisiana Breast and Cervical Health Program (LBCHP)One of the Affiliate’s partnerships is with the Louisiana Breast and Cervical Health Program (LBCHP). The LBCHP provides quality, no-cost, breast and cervical cancer early detection services to uninsured or underinsured, low and moderate income women age 40 or older. Priority is given to women who are ages 50-64, below 250% of the Federal Poverty Guidelines and the uninsured or underinsured. Among this group of women, priority is given to those who have not received screening in the past five years. As of March 10, 2011, 12, 829 distinct women have been served by LBCHP. This number is from January 1, 2006 through January 1, 2011 (some data from December 2010 is not in as of this report). The women served by the LBCHP are women in the New Orleans Affiliate Service Area (see figure 4).

Figure 4: Map of LBCHP Distinct Women Served by Zip Codes (2002-2010)

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Susan G. Komen for the Cure® New Orleans has played a significant role in helping secure the continued funding of Louisiana’s Breast & Cervical Health Program. The LBCHP is the backbone of funding for health screenings and treatment for uninsured women in our service area and the state. Like other states facing budget cutbacks, we have worked together to ensure the needed funds for breast health remain within the state’s current budget. The Komen New Orleans Affiliate has funded the LSUHSC Breast Center and area clinics through our local grants program that work together with the LBCCEP program to serve families in our area. To date Komen New Orleans has granted $2,904,667. Over $500,000.00 was granted in 2011 alone. The Komen New Orleans Affiliate participates in both the statewide Lobby Day and National Lobby Day for Komen and has helped target specific legislators for support when asked. We strive to work together with the Komen Advocacy Alliance to better serve the families in our service area with needed support.

ConclusionsSeveral themes emerged analyzing the health system. Providers are acutely aware that they lack the funding and staffing needed to educate women – in particular women in the uninsured, underinsured and indigent population. The successful navigation of the Continuum of Care is in jeopardy because many women do not have access to free or low cost screenings in their parish. Even more of a barrier is that diagnosis and treatment centers are not available to most residents living outside of Orleans Parish. There are many clinics that provide breast health exams, navigation programs, literature and follow-up care, however, chemotherapy and radiation treatments are heavily concentrated in Jefferson and Orleans Parish, in particular for the uninsured and economically disadvantaged. Lack of transportation and travel time is a huge barrier for patients getting proper treatment. Providers state that many patients not receiving proper breast health screenings are those that are using the Emergency Departments as their primary source of health care, therefore, resulting in late stage diagnosis.

There is a disparity in breast health services and treatment for the underinsured, uninsured and indigent patient population. This gap has become even more apparent following the closing of the Charity Hospital Health System in Orleans Parish in 2005. In addition, there are a disproportionate number of African Americans who relied heavily on the Charity Hospital System. Programs like the LBCHP are a vital resource for this community and will be greatly impacted if the state cuts back on funding. It is essential that we continue to advocate for the services provided by our grantees and partners. We need to search for new partners who can help provide transportation services, more navigation systems and better outreach into the communities, in particular the African American and the underserved communities.

The Community Profile Team explored other qualitative data in the community. A survey questionnaire was given to women attending four health clinics in three of the priority parishes. This information is explained in detail in the next section.

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Breast Cancer Perspectives in the Target Communities

MethodologyTo better understand the Continuum of Care in the target communities served by the Komen New Orleans Affiliate, the Community Profile team gathered more qualitative data by surveying women in several of the priority parishes. Not all of the women surveyed are considered the underserved. However, most are uninsured and economically disadvantaged. These patients were provided a survey. The questionnaires contained twelve questions about general breast health. A second, separate section was included with seven questions to be answered by breast cancer survivors only. The questionnaires were given to the women by the clinic supervisors. Four clinics agreed to participate. Each of the clinics is located in a priority parish. Two are in Orleans Parish, on in St. Charles Parish and one in Washington Parish. The clinics were chosen because of the patient populations that they serve as well as the parish statistics on late stage diagnosis and high average annual mortality rates. A large portion of the clinic patients are African American.

A total of 48 surveys were given to patients. Twelve patients from each of the four clinics were given the questionnaires. The response rate was lower than expected, with fewer than half completing the survey. Twenty forms were completed. None of the patients completing the questionnaires was a survivor.

Some examples of the general breast health questions are as follows:1. What does breast health mean to you?2. What does Susan G. Komen mean to you?3. Who are the people that provide breast health information in this community?4. Where is someone most likely to go for breast health information and screening?5. What keeps women in this community from getting proper breast health information?6. Do you regularly get screened?7. Do you know if you have a family history of breast cancer?

Responses by the patients proved to have similar themes. These themes include: Lack of money or insurance, fear, lack of education and cultural barriers and misconceptions.

Lack of money and insurance: According to the feedback on the surveys, women in this community do not get proper screenings due to lack of money and insurance. When answering questions #5 and #6, women stated this reason as the number one reason for not getting mammograms and breast exams. The surveys include information that supports the fact that women can’t afford the screenings or afford to wait in line for free screenings because they have to work or need child care. Without insurance, there are only a few places to receive free or partial pay services. These clinics are often crowded and require a patient to wait for some time before being seen. Many women also stated that without transportation it is very difficult for them to access the free clinics. It is necessary that more funds become

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available to provide more screening opportunities for the underserved and uninsured patients. More locations are needed to better serve those that lack transportation or access to public transportation.

Lack of education and fear of unknown: Only two of the women that completed the community survey had a clear understanding of Susan G. Komen for the Cure®. Their knowledge of breast health awareness is limited as well as their family history of breast cancer. Most women’s answer to #7 was “I don’t know if I have a family history of breast cancer. My mother didn’t talk about sickness in my family”. In fact, some stated for #6 that “if you talk about cancer you get cancer and if you get checked for cancer you will end up having cancer –so no, I don’t get screened”. There seems to be a cultural fear that if they don’t look for it – they won’t end up with it. It is clear that there needs to be better community education to get women comfortable talking about breast cancer and breast health awareness. Women in this community need a better understanding that breast cancer caught early enough provides a person with a much more positive outcome. Most of the women listed the clinic as their main provider for health care, whereas some responded that they often visit an Emergency Department for health care.

Cultural barriers and misconceptions:Many of the underserved have common misconceptions about breast health. Cultural barriers negatively impact proper screening, diagnosis stage and time to treatment. Many African Americans and Hispanic/Latino’s are unaware of their family history. The subject of breast health is taboo in some of their cultures and older generations have been reluctant to discuss breast health with the younger generations. Once again, it is clear that lack of funds and staff to properly reach and educate these patients has put the underserved at a breast health care disadvantage. It is imperative that we reach and educate the women of this generation to better serve their breast health needs. More funds and outreach programs would generate more awareness and proper access to care.

The second section of the survey required that only breast cancer survivors answer. Some example questions in this section were as follows:

Were you advised of your treatment options?What stage was the cancer detected?What stage was the cancer when treatment began?

No one that completed these surveys was a survivor.

An additional set of surveys was sent via the internet or fax machine. These were sent to key informants. They were chosen because they were respected members of the African American community and the breast health community. Several of the key informant questionnaires were sent to breast cancer survivors. A total of twelve key informant surveys were completed.

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The key informant questionnaires described the same common themes as barriers to proper breast health. They all felt that the women in their community least likely to get regular screenings are uninsured women and minority populations. All of these women were aware of Susan G. Komen for the Cure®. These women surveyed listed transportation and money as the biggest barriers for women trying to access adequate breast health care. Key informants also stated a need for more state funded programs in the Greater New Orleans Metropolitan Area.

▪The breast cancer survivors stated that there was a need for better breast health education for the front of office staff. ▪ All felt there is a need for state funded navigation programs.▪For these survivors, navigating the system was as overwhelming as the diagnosis. ▪All stated that they received adequate and timely treatment; however, all agreed that there is a need for more treatment facilities for the uninsured. ▪These women were all diagnosed with screening. ▪None were eligible for clinical trials at the time of diagnosis.

ConclusionsAll of the information gathered through these questionnaires and surveys helps to explain some of the disparities in access to breast health care in the Greater New Orleans Metropolitan Area. We know from our data that African American women are a large percentage of the Greater New Orleans Metropolitan Area population. It is documented that African American women in Southeast Louisiana as well as the target parishes have higher than average annual mortality rates. Many are uninsured and economically disadvantaged. The surveys tell us that these women skip regular screenings due to lack of money, fear of the unknown, lack of education and preconceived cultural beliefs.

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Conclusions and Action Plan

Target Community FindingsBreast cancer is the most commonly diagnosed invasive cancer among women in Louisiana, accounting for 29% of all cancers in white women and 31% of all African American women. It is the most common cause of cancer death among African American women in the state and the second most common cause of death from cancer among white women in the state.

Mortality rates for women of all races are decreasing nationally, however, the mortality rate for African American women in Louisiana is still well above the national average. The average annual mortality rate for African American women in the U.S. is 32.4. African American women in Southeast Louisiana have an average annual mortality rate of 38.2. The average annual mortality rate for white women in the U.S. is 23.4. In Southeast Louisiana, the average annual morality rate for white women is 25.2.

Demographic and statistical information collected revealed that women in six parishes in the Greater New Orleans Metropolitan Statistical Area are at the greatest risk of falling out of the Continuum of Care. These six parishes were chosen as target areas. They are Jefferson Parish, Orleans Parish, St. John the Baptist, St. Charles Parish, St. Tammany Parish and Washington Parish. One group of women particularly at risk is the African American women in these parishes. African American women in Jefferson, Orleans and St. John the Baptist Parishes have a higher than average annual mortality rate, St. John the Baptist being extremely high at 59.4%, followed by Jefferson with 39.3% and Orleans with 38.3%. Jefferson, Orleans and Washington Parish have higher than national average morality rates for white women. Washington Parish is the highest with 27.9, followed by Orleans with 26.8 and Jefferson with 26.0. The breast cancer mortality rates were provided to the team by the Louisiana Cancer Registry.

When looking at mortality rates, one must consider stage of diagnosis. Stage of diagnosis is important when looking at the breast health of a community. It is one of the most important factors contributing to mortality and in determining the prognosis and treatment options for breast cancer. Unfortunately, African American women in St. Charles, St. John the Baptist, St. Tammany and Washington Parishes have a very high rate of late stage diagnosis, with Washington Parish being the highest at 52.90%.

Of all the eight parishes served, Washington Parish has the highest percentage of uninsured women with 29.6% uninsured. Orleans Parish follows with 28.7% of women uninsured. Washington and Orleans Parish also have the highest populations living below the poverty level. Orleans parish has 23.7% living below the poverty level and Washington parish has 19.4% according to the U.S. Census Bureau. These factors potentially impact access to adequate breast health care, diagnosis and treatment.

Health Systems ConclusionsThe aftermath of Hurricane Katrina in 2005 created more health disparities in the New Orleans Greater Metropolitan area health care system. Charity Hospital, the region’s

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principal health care service provider to uninsured and indigent residents in the area, was damaged beyond repair and failed to reopen. The closure of this health system has left an even larger disparity in health care for these residents. The indigent clinics and providers lack the funds and support staff to close the gap in this health care disparity. The health systems analysis provided other reasons why this gap still exists. Providers also are unable to provide enough educational outreach to the communities. Many of the residents are failing to get regular screenings due to lack of money, transportation and access. Instead, they are using the Emergency Departments as their primary source of healthcare, which may help to explain some of the late stage diagnosis.

Several of the target parishes have clinics that provide breast exams and even no or low-cost mammograms, however, many don’t have any facilities for diagnosis or treatments. Most uninsured or indigent patients have to travel to Orleans parish for diagnosis and treatment. Transportation to and from diagnosis and treatments is a huge barrier for many patients. The exhausting and often inconvenient travel makes it difficult for many patients to successfully remain in the Continuum of Care. Partnerships and organizations that can either provide local treatment or help aid in transportation are desperately needed for the parishes outside of Orleans. We need to continue to support, work with and advocate for our grantees and partners. Any future cuts to the LBCHP will greatly impact our service area. We need to focus on finding new organizations that can help provide more navigation programs, more treatment facilities and transportation to and from treatments.

Community Perspectives ConclusionsThe women who completed the community questionnaire survey had similar responses to the questions about breast health care. Similar themes were that they do not have a very good understanding of what proper breast health care is. They do not know their family history of breast cancer. Cultural fears and misconceptions prevent them from getting properly screened as do lack of money and education. Most are not familiar with Susan G. Komen. This tells us that there is a need for greater community involvement. There is an even greater need for breast health awareness educational programs for these communities that contain culturally appropriate messages.

The key informative surveys suggest that educational programs for breast health support staff are necessary. More user friendly navigation programs are needed for newly diagnosed patients. These women also suggested that there was a great need for more federally and state funded programs for the uninsured and underserved.

Priority Setting ProcessThe demographic and statistical information collected along with the qualitative information from the surveys revealed that women in six parishes in the Greater New Orleans Metropolitan Statistical Area are at the greatest risk for falling out of the Continuum of Care. These parishes are: Orleans Parish, Jefferson Parish, St. John the Baptist, St. Charles Parish, St. Tammany Parish and Washington Parish. Overall, African American women in these parishes are at an even greater risk. They are being

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diagnosed at late stages and have the highest rates of mortality. It is documented that a large percentage of African American women in the Komen New Orleans Affiliate service area are uninsured and economically disadvantaged.

2011 – 2013 Affiliate Action PlanBased on demographic, statistical and qualitative information collected for this report, the Komen New Orleans Affiliate has chosen three priorities. These priorities take into account the common themes seen in the surveys and questionnaires. These themes are the common barriers to proper breast health awareness. These barriers are lack of money and insurance, lack of education and fear of the unknown and cultural barriers and misconceptions. The timeline for these priorities will be August 1, 2011 to March 31, 2013. While the three priorities will apply to all eight parishes in the New Orleans Affiliate service area, special emphasis will be given to the six target parishes: Orleans, Jefferson, St. John the Baptist, St. Charles, St. Tammany and Washington.

Priority 1: Provide educational outreach programs specifically for African American women that will help remove cultural misconceptions, eliminate fear and increase breast health awareness. Objective 1: Maintain partnership with Xavier University, Southern University and Dillard University to provide culturally appropriate breast health messages to the students and faculty of the Universities. Education and information are the keys to breaking the cultural cycle of not getting screened for fear of diagnosis. Emphasis should be on early detection. Objective 2: The Affiliate will participate in University health fairs and partner with school health clinics, sororities and fraternities as well as community General/Family Practice offices and OBGYN’s to promote breast health awareness. Objective 3: The Affiliate will partner with local churches and pastors to educate its congregations and build trust with and awareness of Susan G. Komen the Cure® New Orleans Affiliate. Objective 4: Maintain partnership with The New Orleans Saints, Hornets and Zephyr organizations to provide culturally appropriate breast health messages at charity events, pre-game events and half-time events. Objective 5: Coordinate “Pink” events with community hair salons to promote culturally appropriate breast health messages.

Priority 2: Increase Breast health awareness, educational outreach, and access to screening services for the uninsured and underserved. Objective 1: Susan G. Komen for the Cure® New Orleans Affiliate will continue to partner with the Louisiana Breast and Cervical Health Program (LBCHP) and advocate for additional state funding for uninsured women in Southeast Louisiana. Objective 2: The Affiliate will continue to promote relationships with state legislators to advocate for federal breast cancer access legislation. Objective 3: We will continue to partner with and establish a presence in the local health clinics, such as St. Thomas Community Health Center, LSUHSC clinic,

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LSU-Bogalusa Medical Center, West Jefferson Women’s imaging and Breast Center and the St. Charles Community Health Center. Objective 4: The Affiliate will continue to work with grantees and seek out new grantees that can provide patient navigation, allow for additional screening and transportation to and from screening and treatment. Objective 5: We will continue to participate in statewide Lobby Day and National Lobby Day for Komen to target specific legislators for support for more funding for patient navigation and transportation.

Priority 3: Increase Awareness of Susan G. Komen for the Cure® New Orleans and the services that are provided by the Affiliate. Objective 1: Susan G. Komen for the Cure® New Orleans will work with community and civic organizations along with leaders in each community of Jefferson Parish, Orleans Parish, St. Charles Parish, St. John the Baptist Parish, St. Tammany Parish and Washington Parish to conduct and partner with existing health fairs and community events. Objective 2: We will expand our existing partnerships with television, radio and on-line community partners. Ideally, community awareness would be increased by having a corporate partner or sponsor to focus on public awareness of both Susan G. Komen New Orleans and breast health awareness. Objective 3: Continue to partner with health and breast health clinics, physician’s offices, hospitals and schools to attend all health fairs and events providing accurate breast health awareness literature. Objective 4: We will continue our partnerships with the Mary Bird Perkins Cancer Center in Covington, the Mammography Breast Center in Mandeville, the Center for Restorative Breast Surgery in New Orleans, M.D. Anderson at East Jefferson General Hospital in Jefferson Parish, the Ochsner Breast Center in Jefferson and the Louisiana Cancer Registry and the LBCHP.

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References

1. Williams, Clayton, Susan Bergson and Gregory Stone. “Health Challenges for People of New Orleans.” Louisiana Public Health Institute. This work was commissioned by the Henry J. Kaiser Family Foundation.

2. Williams, Clayton, Susan Bergson and Gregory Stone. “Health Challenges for People of New Orleans.” Louisiana Public Health Institute. This work was commissioned by the Henry J. Kaiser Family Foundation.

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