State of Louisiana. Statewide Coordinated Statement of Need and HIV Comprehensive Plan

Transcription

1 State of Louisiana Statewide Coordinated Statement of Need and HIV Comprehensive Plan 2009

2 TABLE OF CONTENTS State of Louisiana Statewide Coordinated Statement of Need and HIV Comprehensive Care Plan: Table of Contents 1 Contributors and Acknowledgments 3 List of Abbreviations 5 Executive Summary 7 Purpose 7 Process 8 Data Sources 8 SECTION I: WHERE ARE WE NOW: WHAT IS OUR CURRENT SYSTEM OF CARE? 11 Chapter 1: Description of the State 12 Chapter 2: Description of the Historical Response to the Epidemic 17 Chapter 3: Description of the Current State Epidemic 19 Chapter 4: Significant Epidemiology and Description of Specific Sub-Groups and Trends 21 Men Who Have Sex with Men (MSM) 21 African Americans 23 Hispanics 26 Women, Children and Perinatal Transmission 28 Incarcerated Persons 31 Substance Users 33 Youth 35 Poverty and Homelessness 36 Rural Residents 38 Adults Age 50 and Older 39 HIV/Hepatitis C Co-infected 41 Emerging Populations: Transgendered 42 Chapter 5: Unmet Need Estimate/Gaps in Care/Prevention Needs 43 Chapter 6: Needs, Barriers and Recommendations 46 Summary of Consumer Needs and Gaps in Services 46 Ambulatory/Outpatient Medical Care 49 Housing Assistance 52 Medical Transportation 58 Medications 60 Mental Health Treatment Services 63 Substance Use Treatment Services 67 Medical Case Management 69 Nutritional Assistance 71 Oral Health Care 74 Education 76 Chapter 7: Description of Current Continuum of Care 80 Page 1 of 133

3 TABLE OF CONTENTS (Continued) SECTION II: WHERE DO WE NEED TO GO: WHAT IS OUR VISION OF AN IDEAL SYSTEM 89 SECTION III: HOW WILL WE GET THERE: HOW DOES OUR SYSTEM NEED TO CHANGE 90 TO ASSURE AVAILABILITY OF AND ACCESSIBILITY TO CORE SERVICES? Chapter 1: Goals, Objectives and Activities 91 SECTION IV: HOW WILL WE MONITOR OUR PROGRESS: HOW WILL WE EVALUATE OUR 104 PROGRESS IN MEETING OUR SHORT-AND LONG-TERM GOALS? Chapter 1: Evaluation, Monitoring and Implementation 105 REFERENCES 108 APPENDICES 114 Page 2 of 133

4 Contributors and Acknowledgements The Louisiana Office of Public Health--HIV/AIDS Program (OPH-HAP), the Ryan White Part B grantee, gratefully acknowledges the following participants below who contributed their time and expertise in the development of the 2009 Statewide Coordinated Statement of Need, and concur with the Goals and Objectives set forth in the 2009 Comprehensive Plan. Dimitre Blutcher, NR Peace, Inc. Mary Helen Borck, Family Service of Greater Baton Rouge Lesli Boudreaux, Louisiana Medicaid Ginger Bouvier, NO/AIDS Task Force Brandi Bowen, New Orleans Regional AIDS Planning Council (NORAPC) Barbara Brown, Children s Hospital, Family Advocacy, Care and Education Services (FACES) Vatsana Chanthala, Mayor s Office of Health Policy and AIDS Funding Denise Dandridge, Earl K. Long Hospital, Early Intervention Clinic Sharon DeCuir, HIV/AIDS Alliance for Region Two, Inc (HAART) Sonia Eubanks, Baton Rouge Office of Community Development Sergio Farfan, Louisiana Latino Health Coalition for HIV/AIDS Awareness Chris Gouillory, Baton Rouge Office of Community Development Dana Grey, Delta AIDS Education and Training Center Keith Greenlee, Community Advocate Emily Harper, HIV/AIDS Alliance for Region Two, Inc (HAART) Jane Herwehe, LSU Health Care Services Division (LSU HCSD) Mary Helen Harwood, NO/AIDS Task Force Dwight Jackson, Community Advocate E. Keith Jupiter, Capitol City Family Health Center Dr. Michael Kaiser, LSU Health Care Services Division (LSU HCSD) Shamell Lavigne, Volunteers of America, Greater Baton Rouge Fran Lawless, Mayor s Office of Health Policy and AIDS Funding Dr. Janet Leigh, LSU Dental School Kathleen Lincoln, HIV Outpatient Program Rhonda Litt, Louisiana Primary Care Association Shirley Lolis, Baton Rouge Black Alcoholism Council, Metro Health Lisa Longfellow, Office of Public Health STD Program Meredith Lampton, HIV/AIDS Alliance for Region Two, Inc (HAART) Ann Lowrey, Central Louisiana AIDS Support Service, Inc.(CLASS) Brett Malone, The Philadelphia Center Claude Martin, Acadiana CARES Enrique Moresco, NO/AIDS Task Force Eric Oleson, Project Lazarus Crystal Pope, Collaborative Solutions, Inc. Dielda Robertson, Office of Public Health Hepatitis Program Theresa Richard, Community Advocate Dr. Raman Singh, Louisiana Department of Public Safety and Corrections Derek Spellman, Acadiana CARES Aimee Starnes, Volunteers of America,Greater New Orleans Latoya Stringer, Mayor s Office of Health Policy and AIDS Funding Erika Sugimori, New Orleans Regional AIDS Planning Council (NORAPC) Ronald Thomas, NR Peace, Inc. Noel Twilbeck, NO/AIDS Task Force Rodney Wise, Office of Public Health Maternal and Child Health Program Richard Womack, Greater Ouachita Coalition for AIDS Resources and Education (GO CARE) Page 3 of 133

5 We also would like to acknowledge the HIV/AIDS Program staff members and the consultants who contributed to the development of this document: Susan Bergson, Jacky Bickham, Sam Burgess, Amy Busby, Jack Carrel, Samantha Euraque, Julie Fitch, Kira Radtke Friedrich, Rodrigo Gamarra, Mac Giancola, DeAnn Gruber, Nana Hanson-Hall, Shawn Johnson, Leslie McCoy, Kimberly Peven, Greg Pruett, Sam Ramirez, Billy Robinson, M. Beth Scalco, Jean Schexnayder, Tory Taylor, Franda Thomas, Heather Weaver, Debbie Wendell, Susan Wible and Megan Wright. Page 4 of 133

6 List of Abbreviations ADAP ARV CBO CDAP CDC CORE CP CQI CQM Delta AETC DHH DOC DPS&C EIS EMA FACES FPL FSGBR GOCARE HAART HCV HICP HOP HOPWA HPS HRSA HUD IDU INH LaCHIP LCIW LGBTQ LIS LSU HCSD MAI MCH MCLNO MSA MSM OI OPH-HAP PAP PDP PLWH/A RWCA SAMHSA SCSN SPNS Louisiana AIDS Drug Assistance Program Antiretroviral Community Based Organization Co-payment and Deductible Assistance Program Centers for Disease Control and Prevention Correctional Organization for Re-entry Comprehensive Plan Continuous Quality Improvement Continuous Quality Management Delta AIDS Education and Training Center Department of Health and Hospitals Department of Corrections Louisiana Department of Public Safety and Corrections Early Intervention Services Eligible Metropolitan Area The Family Advocacy, Care, and Education Services Federal Poverty Level Family Service of Greater Baton Rouge Greater Ouachita Coalition Providing AIDS Resources and Education Highly Active Antiretroviral Therapy Hepatitis C Virus Health Insurance Continuation Program HIV Outpatient Program Housing Opportunities for Persons With AIDS HIV Partner Services Health Resources Service Administration Department of Housing and Urban Development Injection Drug User Isoniazid Louisiana Children s Health Insurance Program Louisiana Correctional Institute for Women Lesbian, Gay, Bisexual, Transgendered, Questioning Low Income Subsidy Louisiana State University Health Care Services Division Minority AIDS Initiative Maternal and Child Health Medical Center of Louisiana at New Orleans Metropolitan Statistical Areas Men Who Have Sex With Men Opportunistic Infection Office of Public Health HIV/AIDS Program Pediatric AIDS Program Prescription Drug Plan Persons living with HIV/AIDS Ryan White Care Act Substance Abuse and Mental Health Services Administration Statewide Coordinated Statement of Need Special Project of National Significance Page 5 of 133

7 STD TB TGA US PHS VA Sexually Transmitted Disease Tuberculosis Transitional Grant Area United States Public Health Service Veterans Affairs Page 6 of 133

8 Executive Summary The 2009 Statewide Coordinated Statement of Need (SCSN) and HIV Comprehensive Plan (CP) summarizes HIV-related service needs and barriers across the state of Louisiana, and presents goals and strategies for its evolving HIV service continuum. This document, an update of the SCSN/CP submitted in 2006, was prepared in accordance with the legislative mandate in the Ryan White HIV/AIDS Treatment and Modernization Act of 2006 and the accompanying guidelines issued by the federal Health Resources and Services Administration (HRSA). The SCSN/CP submitted in 2006 was compiled and written in the wake of Hurricanes Katrina and Rita which ravaged southeastern Louisiana in August and September of 2005 respectively. Understandably, the 2006 SCSN/CP was focused on an assessment of the devastation created by these storms and how this impacted the needs, services and barriers of persons living with HIV/AIDS (PLWH/A) in Louisiana as well as those who remained displaced. Three years later, although Louisiana continues to engage in recovery and rebuilding at all levels, a great amount of progress has been made. This 2009 SCSN/CP benefits from stronger data sources to describe our most impacted populations and to build evidencebased recommendations, goals and objectives. A multi-step process was employed to guarantee diverse, statewide participation in the 2009 SCSN/CP. This included a Statewide Needs Assessment and a review of multiple planning, policy, program and evaluation documents that relate to the design, delivery, coordination and integration of HIV care and services. Interactive workshops were facilitated by an independent planning consultant with the guidance and participation of key staff from the Louisiana Office of Public Health HIV/AIDS Program (OPH- HAP), the first of which took place in October Workgroups comprised of consumers, providers and key staff from State programs convened to discuss, revise and draft specific sections of the SCSN and the Comprehensive Plan. In addition, epidemiological data was compiled, analyzed and summarized to build a full picture for HIV service delivery planning and implementation. An overview of specific sub-groups, service needs, service barriers and recommendations to overcome these barriers in Louisiana is presented here. This information is summarized and organized in separate sections of the SCSN as outlined in the Table of Contents. The 2009 Louisiana HIV Comprehensive Plan was generated from the data and information gathered through the SCSN process, coupled with input and recommendations from formal advisory and planning bodies, key staff from State programs, providers of services from all of the Ryan White grantees in all areas of the state, and PLWH/A. Purpose of the 2009 Louisiana Statewide Coordinated Statement of Need (SCSN) and HIV Comprehensive Plan (CP) The Statewide Coordinated Statement of Need is a general statement of the needs of (PLWH/A) in the state of Louisiana based on epidemiological trends, barriers to care and known service needs for affected populations. The SCSN also outlines recommendations for improving the continuum of care throughout the state of Louisiana. The HIV Comprehensive Plan provides an overview of the current service delivery system, as well as identified unmet needs and gaps. Furthermore, a plan comprised of goals, objectives, activities and a plan for monitoring and evaluating progress in these areas are presented, which represent a three-year strategy for the delivery of HIV-related services that will ultimately improve the availability and quality of these services in Louisiana. Page 7 of 133

9 Process In response to the legislative mandates of the Ryan White CARE Act (RWCA), as modified by the Ryan White HIV/AIDS Treatment and Modernization Act of 2006, the Office of Public Health HIV/AIDS Program (OPH-HAP) completes a process of in-depth community assessment and an exhaustive analysis of HIV surveillance data to create the SCSN and the Louisiana HIV CP. In 2009, OPH-HAP updated both the SCSN (most recently submitted to HRSA in 2006) and the HIV CP (also submitted in 2006) and maintained them as one single document. Data Sources Committee representatives utilized two principle data sources to develop these documents: the Ryan White Comprehensive Statewide Needs Assessment Report 2008 (1) (future referenced as the 2008 Statewide Needs Assessment) and the Louisiana HIV/AIDS Third Quarter 2008 Surveillance Report (2). Additionally, multiple literature searches for peer review articles were completed to obtain additional information to augment the existing data. Statewide data was utilized at all times to generate a composite of the overarching needs of PLWH/A. Occasionally; however, minimal data existed for specific areas of the state. In these instances, findings of such special studies are cited with the caveat that they only represent the needs, barriers or opinions of individuals residing in a specific region Statewide Needs Assessment The purpose of the 2008 Statewide Needs Assessment was to gain greater understanding of the current level of HIV/AIDS service needs and to provide insight into consumers perceptions of the availability and quality of HIV/AIDS services across Louisiana. The self-administered instrument was available in both English and Spanish, with an online survey in English. The administration of the survey took place over four weeks, from September 22 through October 17, A total of 1,944 surveys were collected and analyzed with 111 deemed unusable. The table below shows the 2008 Statewide Needs Assessment targets by region and the resulting survey responses. Page 8 of 133

10 Region Number of PLWHA * Regional 2008 Statewide Needs Assessment Targets Percentage of PLWHA Target number of surveys Number returned** Percentage of Target Sample Percentage % % 35% % % 24% % % 2% % % 8% % % 6% % % 9% % % 9% % % 6% % % 4% TOTAL % % 100% * As reported by state surveillance data. **Not all surveys were complete and therefore were not used in the analysis. In terms of regional representation, the sample closely reflected the distribution of PLWH/A across the state. For every region except one, the regional sample proportion was within two percentage points of the PLWHA population as defined by surveillance data. Survey respondents were predominantly in their forties (48%), of African-American ethnicity (70%), and male (60%), which is also reflective of the PLWH/A population in Louisiana. (1) Page 9 of 133

11 Background Characteristics of 2008 Statewide Needs Assessment Survey Respondents and Surveillance Population Needs Assessment Survey Surveillance Data Number Percentage Percentage Gender Male % 70% Female % 30% Transgender 17 1% Race African American % 66% White % 30% Asian/Pacific 9 0.5% 0.3% Native American % 0.2% Multi racial 42 2% 0.3% Other/unknown 33 2% 0.2% Hispanic origin Hispanic/Latino 87 5% 3% Age % 1% % 4% % 8% % 11% % 14% % 18% % 18% % 13% % 8% % 6% The survey sample was reasonably representative of the estimated PLWHA population in Louisiana, though women, African Americans and Hispanics/Latinos were slightly overrepresented. By age groups, however, the sample represents the population very closely. While there may be procedural explanations for some of the differences in sample and estimated population, it is important to remember that the 2008 Statewide Needs Assessment sample is restricted to individuals who are in care and/or receiving other HIV/AIDS services. The surveillance data estimate likely also includes individuals who are out of care. HIV/AIDS Program Surveillance System OPH-HAP maintains an HIV/AIDS surveillance system consisting of an extensive statewide network of reporting sites in public, private, inpatient, outpatient, clinical and laboratory settings. Each year, OPH- HAP publishes statewide and region specific reports with descriptive statistical information regarding persons known to be living with HIV/AIDS in the state of Louisiana. AIDS surveillance was initiated in Louisiana in 1984 and HIV reporting in National estimates and Louisiana surveillance validation studies indicate that over 85% of the AIDS cases in Louisiana have been reported (3). Variation in access to medical care and testing services, as well as differences in targeted prevention programs, influence HIV Page 10 of 133

12 infection detection and reporting across subpopulations and geographic regions. Unlike AIDS data which represent new incident cases, HIV infection data represent HIV cases that were reported after a confidential positive HIV test. All characteristics (e.g. age, gender, race, geographic location) associated with HIV detection are documented at the earliest reported date of a positive test or a physician diagnosis. Because HIV infection data represent only persons who have been tested confidentially, these data do not include HIV-infected persons who have only been tested anonymously or who have not been tested since seroconversion. Therefore, HIV infection data can only provide minimum estimates of the number of persons that are HIV-infected. Page 11 of 133

13 SECTION I WHERE ARE WE NOW: WHAT IS OUR CURENT SYSTEM OF CARE? Page 12 of 133

14 CHAPTER 1: Description of the State Louisiana is a geographically diverse southern state that ranks 31st in the country in geographic area. Nearly as long (380 miles) as it is wide (358 miles), the state s 51,843 square miles are comprised of farmlands, river valleys, forests and more than several thousand lakes (4). Almost 20% of the state (8,277 square miles) of Louisiana is covered by water (5). Population In the 2000 census (6), the total population reported for Louisiana was 4,468,976 persons. In the 2007 estimated census, the total population for the state was 4,293,204 persons, a 4% decrease, which may be due in part to the decrease in population in the New Orleans area following Hurricane Katrina. Distribution of the General Population by Region 2000 Compared to a 2007 b Public Health Region Total PopulationTotal Population % Change 1 New Orleans 1,034, , % 2 Baton Rouge 603, , % 3 Houma 383, , % 4 Lafayette 548, , % 5 Lake Charles 283, , % 6 Alexandria 301, , % 7 Shreveport 522, , % 8 Monroe 353, , % 9 Hammond/Slidell 438, , % Louisiana 4,468,976 4,293, % Source: a Census 2000, US Bureau of the Census; b Census Population Estimates, US Bureau of the Census Louisiana comprises 64 county equivalent subdivisions called parishes. Parish populations range from a low of 5,865 persons (Tensas Parish) to 430,317 persons in East Baton Rouge Parish. The Greater New Orleans area (Orleans, Jefferson, Plaquemines, St. Bernard, and St. Tammany Parishes) represented 22% of Louisiana s population. The major parishes in order of descending population are East Baton Rouge, Jefferson, Caddo, Orleans, and St. Tammany. The state of Louisiana is considered rural; however, 79% of 1 In 2008, the Greater New Orleans Community Data Center and parish governments in the Region 1 area successful contested the Census Bureau s 2007 population estimates for Orleans, Jefferson, and St. Bernard (Orleans 239,124 to 288,113, Jefferson 423,520 to , and St. Bernard 19,826 to 33,439). Final population numbers will be re-released by the Census Bureau in March of Further information can be found at Page 13 of 133

15 its population resides in urban areas which make up eight metropolitan statistical areas (MSAs) which are depicted in the map below. Though the population of Orleans parish decreased significantly due to Hurricanes Katrina and Rita in 2005, it has reached nearly 74 percent of pre-katrina levels as of December 2008 (7). Page 14 of 133

16 Tangipahoa Geographic Guide to Louisiana Public Health Regions and Metropolitan Statistical Areas (MSA) Caddo Union Claiborne Bossier 7 Webster Red River De Soto Lincoln Bienville Jackson Winn Ouachita Morehouse 8 Richland West Carroll East Carroll Madison Caldwell Franklin Tensas Natchitoches La Salle Catahoula Sabine Grant Rapides Vernon Avoyelles Allen Beauregard 5 Calcasieu Cameron Jefferson Davis Evangeline Acadia 4 6 Vermillion Pointe St. Landry Coupee East West Baton Baton Rouge Livingston Rouge Lafayette St. Martin Iberville Ascension Iberia Concordia West Feliciana East Feliciana 2 St. Mary Assumption St. Martin St. James Terrebonne St. Helena 3 Terrebonne St. John St. Charles Lafourche 9 Washington Jefferson St. Tammany Orleans 1 St. Bernard Plaquemines Public Health Regions Urban Parishes (MSAs) 1: New Orleans Jefferson, Orleans, Plaquemines, St. Bernard 2: Baton Rouge Ascension, E. Baton Rouge, E. Feliciana, Iberville, Pointe Coupee, W. Baton Rouge, W. Feliciana 3: Houma Assumption, Lafourche, St. Charles, St. James, St. John the Baptist, St. Mary, Terrebonne 4: Lafayette Acadia, Evangeline, Iberia, Lafayette, St. Landry, St. Martin, Vermillion 5: Lake Charles Allen, Beauregard, Calcasieu, Cameron, Jefferson Davis 6: Alexandria Avoyelles, Catahoula, Concordia, Grant, La Salle, Rapides, Vernon, Winn 7: Shreveport Bienville, Bossier, Caddo, Claiborne, De Soto, Natchitoches, Red River, Sabine, Webster 8: Monroe Caldwell, E. Carroll, Franklin, Jackson, Lincoln, Madison, Morehouse, Ouachita, Richland, Tensas, Union, W. Carroll 9: Hammond/Slidell Livingston, St. Helena, St. Tammany, Tangipahoa, Washington Alexandria Grant Rapides Baton Rouge Ascension Pointe Coupee E. Baton Rouge St. Helena E. Feliciana W. Baton Rouge Iberville W. Feliciana Livingston Houma/Thibodaux Lafourche Terrebonne Lake Charles Calcasieu Lafayette Lafayette Monroe Ouachita New Orleans Jefferson Orleans Plaquemines St. Bernard Shreveport Bossier Caddo Page 15 of 133 Cameron St. Martin Union St. Charles St. John the Baptist St. Tammany De Soto

17 Demographic Composition According to the 2007 estimated census data, the racial and ethnic composition of the state was calculated to be 62% white, 32% African American, 1% Asian and 0.6% American Indian. Persons of Hispanic origin were estimated to make up 3% of the total population. Distribution of the General Population by Race/Ethnicity and Sex Louisiana, 2007 Males, % Females, % Total Population, % Race/Ethnicity (N=2,085,445) (N=2,207,759) (N=4,293,204) White, not Hispanic 1,310,625 (62.9%) 1,363,094 (61.7%) 2,673,719 (62.3%) African American, not Hispanic 641,721 (30.8%) 716,795 (32.5%) 1,358,516 (31.6%) Hispanic 70,903 (3.4%) 65,659 (3.0%) 136,562 (3.2%) Asian 30,588 (1.5%) 30,170 (1.4%) 60,758 (1.4%) American Indian/Alaska Native 12,489 (0.6%) 12,376 (0.6%) 24,865 (0.6%) Native Hawaiian/ Pacific Islander 692 (0.03%) 662 (0.03%) 1,354 (0.03%) More than one race 18,427 (0.9%) 19,003 (0.9%) 37,430 (0.9%) Source: US Census Population Estimates, US Bureau of the Census Age and Sex In 2007, the median age of Louisiana residents was 37.0 years. More than 28% of the population was younger than 20 years of age while 12% of the population was 65 or older. The proportion of females in the overall population was slightly higher than the proportion of males (51% vs. 49%). Distribution of the General Population by Age Group and Sex Louisiana, 2007 Males, % Females, % Total Population, % Age group (years) (N=2,085,445) (N=2,207,759) (N=4,293,204) <5 152,455 (7.3%) 145,702 (6.6%) 298,157 (6.9%) ,912 (22.3%) 449,591 (20.4%) 913,503 (21.3%) ,060 (8.1%) 166,096 (7.5%) 334,156 (7.8%) ,802 (27.0%) 577,021 (26.1%) 1,138,823 (26.5%) ,877 (25.1%) 563,354 (25.5%) 1,086,231 (25.3%) >65 216,339 (10.4%) 305,995 (13.9%) 522,334 (12.2%) Source: Census 2000, US Bureau of the Census and Louisiana Census Data Center Profile Note: percentages may not add up to 100% because of rounding. Poverty, Income and Education In 2007, the median household income in Louisiana was $39,461. According to the estimates, 23% of the population for whom poverty status was determined had incomes that fell below the federally defined poverty level, compared with 17% nationally. Louisiana has one of the highest proportions of children living in poverty: 30% of all children 18 years or younger in Of the total number of families, 52% had a female head of household (no husband present), and 21% of all families had incomes below the poverty level. In 2007, Louisiana ranked 48th among states for median family income. The Page 16 of 133

18 unemployment rate in 2007 was 4% statewide and rose to 6% by October of 2008 (8). In the 2006 estimated census, more than 79.4% of Louisiana residents aged 25 years and older reported educational attainment of high school diploma or higher. However, according to the 2008 United Health Foundation America s Health Rankings, high school graduation rates decreased to 63%. In addition, more than 20% of adults (19 64 years) in Louisiana were uninsured in 2008 (9). Health Indicators An absence of sufficient health insurance coverage can increase dependence on emergent care and fail to highlight the importance of preventive health care activities, including HIV prevention. Thus, it was not surprising to learn that in December 2008, the United Health Foundation ranked Louisiana 50th in overall health. Additionally, based on a national study conducted by Congressional Quarterly in November 2008, New Orleans garnered the distinct reputation of being the most violent city in America (10). This newest tarnishing of the city's reputation came just two months after the journal Foreign Policy ranked New Orleans 3rd among their top five murder capitals of the world, trailing behind Caracas, Venezuela and Cape Town, South Africa (11). Louisiana has high rates of premature deaths, children in poverty and persons who lack health insurance compared to other states. In addition, since 1990 obesity rates, a pre-cursor to a host of chronic diseases, rose from slightly more than 12% to over 30% of the population (9). Poor health indicators in Louisiana also include high rates of sexually transmitted diseases (STD), unintended pregnancies, tobacco use, exposure to tuberculosis (TB) and other chronic and communicable diseases such as diabetes, hypertension, Hepatitis B and C and cancer which further exacerbate the progression of HIV disease. In addition, high rates of depression, other mental health issues and substance use also contribute to poor health outcomes in the state. These health conditions are further worsened by the lack of affordable housing in the wake of recurrent hurricanes. The Louisiana Action Council for the Homeless identified 9,775 adults and children as being literally homeless or precariously housed in a survey during a twentyfour hour period on January 30 th to the 31 st of 2007 (12). Public Aid In , 16% of Louisiana residents were covered by Medicaid and 13% were covered by Medicare. Approximately 400,000 children aged 18 years or younger relied on Medicaid to meet their health care needs (13). In addition, continual evacuation and return and repeated rebuilding continue to fatigue Louisiana s residents. In recent years the Gulf Coast region has been the home to over 24 tropical storms or hurricanes and is host to some of the costliest disasters in American history. Almost exactly three years to the date of Hurricane Katrina s landfall, Hurricane Gustav came ashore in Cocodrie, Louisiana and caused $4.3 billion in damages as the storm moved slowly through the state to the north and to the west. The loss of life was mitigated substantially by the evacuation of 1.9 million Louisiana residents in the three days prior to landfall, which made that exodus, according to Governor Bobby Jindal, the largest in the state s history. Two weeks later, Hurricane Ike made landfall in Baytown, Texas, and became the third most destructive hurricane to ever make landfall in the United States ($27 billion in damages). It is no surprise that Louisiana AIDS Drug Assistance Program (ADAP) utilization in Regions I, II and V decreased more than $250,000 from the previous month as residents had to evacuate and remain out of their residences while clean up ensued. Page 17 of 133

19 Chapter 2: Description of the Historical Response to the Epidemic The first AIDS Service Organization in the Gulf South was founded in 1983 by a group of concerned private citizens and health care professionals in response to the early devastating effects of the AIDS epidemic in the New Orleans area. At its inception, volunteers provided telephone information in response to recorded messages. It soon became a staffed "hotline" for the state of Louisiana. Shortly after, when the HIV antibody test was developed in 1985, the NO/AIDS Task Force began to offer testing and counseling services. The State of Louisiana responded to the growing epidemic by establishing the HIV/AIDS Program as part of the OPH in 1985 to provide leadership, policy development and technical assistance throughout the state. In addition, Louisiana State University, through a grant from the Robert Wood Johnson Foundation, focused on providing HIV/AIDS education, prevention interventions and social and medical services. Project Lazarus was founded in New Orleans in 1986 as a home for people with AIDS who were homeless or whose families or friends could no longer care for them. In 1987, the HIV Outpatient Program (HOP) of the Medical Center of Louisiana at New Orleans (MCLNO or Charity Hospital ) was conceptualized. A group of leaders in the medical community received funding from the Robert Wood Johnson Foundation to develop a continuum of care and linkages designed to promote multi-disciplinary care for PLWH/A. HOP contracted with Catholic Charities to fill positions unavailable within the Charity system. The Clinic first opened in June In 1988, Children's Hospital received a HRSA grant for one of thirteen original pediatric AIDS demonstration projects; this would become the Pediatric AIDS Program (PAP). In 1989, a second Robert Wood Johnson grant was obtained by Catholic Charities, which subsequently funded the Regional AIDS Interfaith Network (RAIN) and offered practical support services and companionship for PLWH/A. By 1990, the need for medical services at HOP had grown to the extent that there was a nine-month wait to access initial services. As such, the clinic moved into a larger, self-contained property at South Roman Street--where it stayed until the breach in the levee due to Hurricane Katrina flooded the building. A variety of subspecialties were offered by the clinic. Collaboration was expanded to include links to Tulane pediatrics and maternal/child programs with PAP. The creation of the RWCA in 1990 provided the opportunity for the New Orleans area to expand the services available to PLWH/A. Children's Hospital obtained a HRSA grant from the Maternal and Child Health Program (MCH) to establish the PAP program as a Special Project of National Significance (SPNS), and received additional funding from the Substance Abuse and Mental Health Services Administration (SAMHSA) to target cocaine-addicted HIV-infected pregnant women and infants. They also received a grant from the MCH program to care for HIV-infected infants who had been abandoned. In 1991 PAP began to contract to provide case management, health education, and child care in the HOP Clinic and to develop a maternal/child clinic so that mothers and their babies could be seen in the clinic on the same day. The State of Louisiana started the Early Intervention Program during this time period to provide community-based medical care to persons infected with HIV who would benefit from preventive and responsive medical care and access to medications. In 1992 the eight-parish greater New Orleans metropolitan area was established under Title I of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act and began to receive an annual award directly from HRSA for the provision of social and support services to PLWH/A. In response to the AIDS epidemic throughout the rest of Louisiana, community based organizations (CBO) focused on assisting PLWH/A also began to emerge. In 1987, the Southwest Louisiana AIDS Council (SLAC) in Region V, the Central Louisiana AIDS Support Services (CLASS) in Region VI, The Page 18 of 133

20 Philadelphia Center in Region VII and the Greater Ouachita Coalition Providing AIDS Resources and Education (GO CARE) in Region VIII were formed and provided resources to HIV-infected people living in those areas. In 1989, Lafayette CARES became the lead HIV agency in Region IV. Clients living in Regions III and IX received assistance through a variety of sources until 2002 when the NO/AIDS Task Force became the lead agency in Region III and Volunteers of America of Greater Baton Rouge began providing services in Region IX. Simultaneously, the ten regional public medical centers (the Charity hospitals) continued to attract providers that could provide HIV specialty care to those low income persons who were also under- or uninsured. In 1991, the administration of these medical centers was transferred by legislative act from the Department of Health and Hospitals (DHH) to the Louisiana Health Care Authority (LHCA) and in 1992 LHCA officially assumed operation of the State-owned, acute-care hospitals with the exception of the Louisiana State University Hospital at Shreveport. In 1997 the administration was transferred again from the LHCA to the LSU Health Care Services Division (HCSD). Since that time, six of the ten medical centers have been successful competitors for Ryan White Part C funding to expand and enhance HIVrelated primary and specialty medical care. However, even though E.A Conway Medical Center in Monroe, Louisiana and Earl K. Long Medical Center in Alexandria are under the administrative umbrella of the hospital in Shreveport, they still receive and administer separate Part C funding. Although the New Orleans Eligible Metropolitan Area (EMA), prior to Hurricane Katrina, consistently reported the greatest overall number of PLWH/A, since 2001 the Baton Rouge EMA has had a higher case rate (number of detected HIV/AIDS cases per 100,000 population). In 2007, as a result of the newly reauthorized Ryan White HIV/AIDS Treatment and Modernization Act of 2006, the seven-parish metropolitan area of greater Baton Rouge qualified as a Transitional Grant Area (TGA) and began to receive funding directly from HRSA to support medical and social services to PLWH/A. This geographical area has since been expanded to include two other parishes. Most of the social service agencies noted above, as well as new agencies identified through the expansion of funding through the Congressional Black Caucus (CBC) Minority AIDS Initiative (MAI), continue to receive Ryan White (Part A, TGA, B, C, D, F or MAI depending on their structure and mission) funding, as well as Centers for Disease Control and Prevention (CDC) Prevention Funding, and many are also successful applicants for the distribution of resources through the Housing Opportunities for Persons With AIDS (HOPWA). The dual administration of these funds allows for the provision of a seamless continuum of care to PLWH/A. Page 19 of 133

21 Chapter 3: Description of the Current State Epidemic The following is a surveillance summary from the 2008 Louisiana HIV/AIDS Surveillance 3 rd Quarterly Report (2). Data in this report includes cases diagnosed with HIV/AIDS and reported as of September 30, As of September 30, 2008, a cumulative total of 28,303 HIV/AIDS cases have been reported in Louisiana, including 303 pediatric cases. The HIV/AIDS epidemic continues to have a significant impact on the public health of Louisiana residents. As of September 30, 2008, a cumulative total of 28,303 persons have been diagnosed with HIV/AIDS in Louisiana. Some of the most significant current trends are highlighted below: A total of 16,227 persons are living with HIV/AIDS in Louisiana; of these individuals, 8,609 persons (53%) have an AIDS diagnosis. The cumulative number of deaths, among persons diagnosed with HIV/AIDS, reported to the Louisiana OPH through September 30, 2008 is 11,843, including 98 deaths among pediatric cases. Nationally, Louisiana ranked 5th highest in AIDS case rates and 12th in the number of AIDS cases diagnosed in 2006, according to the CDC 2006 HIV/AIDS Surveillance Report (Vol. 18). Baton Rouge ranked 4th for AIDS case rates among the largest metropolitan areas in the U.S. in 2006; New Orleans ranked 8th. HIV continues to disproportionately affect African Americans in Louisiana. Although African Americans make up only 32% of the state s population, they represent 66% of PLWH/A. Also, 72% of HIV cases and 75% of AIDS cases diagnosed in 2007 were among African Americans. In 2007, 1,151 new HIV cases were diagnosed in Louisiana. Of these cases, 30% (n=350) occurred in Region I (New Orleans) and 28% (n=322) occurred in Region II (Baton Rouge). As shown in the table below, although the New Orleans region had the highest number of new diagnoses, the Baton Rouge region had the highest HIV rate per 100,000. The Monroe region had the third highest HIV rate. Region New HIV Diagnoses 2007 HIV Rate (per 100,000) I: New Orleans II: Baton Rouge III: Houma IV: Lafayette V: Lake Charles VI: Alexandria VII: Shreveport VIII: Monroe IX: Slidell/Hammond Louisiana 1, In 2007, 812 new AIDS cases were diagnosed in Louisiana. Of these cases, 32% (n=263) occurred in Region I (New Orleans) and 27% (n=219) occurred in Region II (Baton Rouge). Page 20 of 133

22 In Louisiana, 31% of new HIV cases and 31% of new AIDS cases are among women. Among women living with HIV/AIDS, the predominant known mode of transmission is high-risk heterosexual contact followed by injection drug use. Among men living with HIV/AIDS, the predominant mode of transmission is men who have sex with men (MSM) followed by injection drug use. Page 21 of 133

23 Chapter 4: Epidemiology and Description of Specific Sub-Groups and Trends Each identified sub-group was chosen based on the known burden of HIV disease, the level of identified need and the noted barriers to care. The SCSN committee members recognize that other populations are impacted by HIV and require focus, including hidden and hard-to-reach populations such as Native American and Vietnamese Americans, the deaf and hearing impaired, those with a mental health and HIV dual diagnoses, and aging populations seeking the services of nursing homes. Although available statistical data is scant and/or does not support the inclusion of these groups in the 2009 SCSN, these are potentially emerging populations that warrant monitoring and future assessment. Additionally, many PLWH/A members of these groups can be included among the specific sub-groups currently indicated, e.g. MSM, substance abusing persons, women and children, rural residents, etc. In order to better meet the needs of all affected individuals, recommendations have been made to provide culturally sensitive services and to include affected consumers in the design, delivery and evaluation of services. Many barriers were found to be common among the special populations, and barriers specific to each area of need will be further discussed in the document. Men Who Have Sex With Men (MSM) MSM 2 continue to be disproportionately impacted by HIV/AIDS in Louisiana. Although 5 7% of male adults and adolescents in the United States identify themselves as MSM, in 2007, 51 % of total PLWH/A in Louisiana were MSM (14,15). In 2007, 61% of persons newly diagnosed with HIV were MSM. Since greater than 35% of all PLWH/A in Louisiana have no reported risk factors, these numbers potentially underestimate the impact on this subpopulation. For example, among African American males in Louisiana, 42% of PLWH/A have no reported risk factors. Based on the reported risk distribution noted above, some of this 42% are likely to be MSM. Regardless, it is an undisputed fact that MSM of all races/ethnicities are disproportionately affected by HIV/AIDS in Louisiana (2). Louisiana Population of PLWH/A 2007 Louisiana New HIV Diagnoses % MSM 39% MSM 55% all other groups 61% all other groups There appear to be substantial differences in the racial/ethnic distribution of the MSM group when compared to the overall racial/ethnic distribution of the state and the racial/ethnic makeup of PLWH/A in the state of Louisiana. Though African Americans only account for 32% of the population of Louisiana, they are disproportionately impacted by HIV/AIDS. The same is true of African American MSM 2 For purposes of this analysis, the term MSM includes both those with reported MSM Non-IDU and MSM/IDU risk behaviors. Page 22 of 133

24 PLWH/A as they account for 72% of PLWH/A with a reported risk of MSM. Understanding this significant impact on the African American population is critical to effectively targeting prevention efforts and demonstrates clearly that analysis of the MSM group as a sub-population by racial/ethnic sub-groups is imperative (2). Total Louisiana PLWH/A Ethnic/Racial Background MSM Louisiana PLWH/A Ethnic/Racial Background Other Hispanic Other Hispanic These findings are mirrored in the new CDC HIV incidence surveillance system analysis of 22 states, including Louisiana, which indicated that, in 2006, 73% of new infections were in males, 45% were in African American and 53% were in MSM. Subpopulation estimates found that, of new infections among males, 72% were in MSM. Among MSM with new infections, 46% were White, 35% were African American and 19% were Hispanic. Study results further demonstrate that age distribution of persons with new infections suggest important differences by race and ethnicity among the MSM group that must be considered in prevention efforts (16). There also appear to be substantial differences in the age distribution of PLWH/A in the MSM sub-group versus the general population of PLWH/A in Louisiana when analyzed by race. Eighty-percent of young MSM (ages 13-24) living with HIV/AIDS are African American, compared to 44% of MSM PLWH/A over age 24. This is also true for those newly infected, as 75% of MSM ages diagnosed with HIV in 2007 are African American compared to 52% of MSM PLWH/A over age 24 (2). Estimated Number of New HIV Infections in MSM, by Race/Ethnicity and Age Group, United States, 2006 (17) Page 23 of 133

25 High HIV incidence among gay and bisexual men in the middle age groups (30 39 and 40 49), especially white MSM, highlights the importance of programs that keep MSM HIV-free throughout the course of their lives. The table above shows the estimate of new HIV infections in MSM by race/ethnicity and age. It is not safe to assume that men in these groups are no longer in need of HIV testing and prevention programs. A range of factors likely contribute to continued transmission in these age groups, including homophobia, substance use, higher HIV prevalence within this group and the difficulty of consistently maintaining safer behaviors for decades. The distribution of new HIV infections in the 2006 CDC incidence data and Louisiana s 2007/2008 surveillance data demonstrate that, more than 25 years after the first report of AIDS, the disease continues to disproportionately affect the MSM population more than any other in the United States. In addition, there is growing recognition that MSM are at risk for multiple health disparities beyond HIV. Childhood sexual abuse, substance use, mental health disorders, STDs, binge drinking (18) and intimate partner violence exist at high levels among MSM, and have been shown to be associated with increased HIV risk. At the same time, prejudice and discrimination, increasing rates of risk behavior, prevention fatigue and serosorting are some of the realities of the MSM community which must be considered to affectively address HIV/AIDS in Louisiana (19). Health care providers also create or exacerbate barriers to care due to lack of education about LGBTQspecific issues and sometimes provider bias or heterosexism. Examples of these barriers include assuming the patient is heterosexual, lack of inquiry about important relationships, lack of inquiry about secrecy or experiences of stigmatization, overt discrimination and focusing on sexuality when it is not the health issue at hand. One of the most significant barriers to LGBTQ health caused by health providers is the lack of population-specific knowledge about specific health issues faced by the LGBTQ community such as screening for Hepatitis as well as high rates of STD co-infection (20). Sensitivity is required when designing and providing care services for this particular population. African-Americans The HIV/AIDS epidemic continues to disproportionately impact African American men and women across the United States. Although African American communities make up less than 13% of the U.S. population, African Americans accounted for nearly 50% of all HIV/AIDS cases diagnosed in (21) In Louisiana as of September 30, 2008, 10,708 African Americans were living with HIV/AIDS. Although African Americans make up only 32% of the state s population, 72% of the new HIV cases diagnosed in 2007, 75% of the new AIDS diagnoses and 66% of all PLWH/A were African American. In 2007, 81% of new HIV diagnoses among women were African Americans. In addition, 82% of the 173 infants born to HIV-infected mothers in 2007 were African American. Three infants were perinatally infected with HIV, and all three were African American (2). In all regions of the state there is a disproportionate impact of HIV/AIDS on African Americans as shown in the table below. Page 24 of 133

26 Region I: New Orleans II: Baton Rouge III: Houma IV: Lafayette V: Lake Charles VI: Alexandria VII: Shreveport VIII: Monroe IX: Slidell/Hammond % African American: General Population 38% 41% 27% 28% 22% 27% 39% 37% 17% % African American: Persons Living with HIV/AIDS 59% 83% 56% 56% 58% 70% 69% 78% 49% HIV/AIDS has had a greater impact on African Americans in the South than in any other area of the country, especially among men who have sex with both men and women (22). Among African American women in Louisiana high-risk heterosexual activity is the leading exposure category, while MSM is the highest exposure category among African American males (3). Case Rate (per 100,000) Trends in HIV Rates Among Females by Race Louisiana, Year of HIV Diagnosis African American Hispanic/Latina White In 2006, the HIV diagnosis rate in African American females was twice the rate in Hispanic females and almost eight times greater than the rate in white females. The HIV diagnosis rate among African American males was over 4 times greater than that of white males. However overall, HIV/AIDS rates have declined in African American men and women since Not all populations experience the same access to treatments, or possibly the same levels of treatment efficacy. Since 1996, AIDS death rates (per 100,000 population) have decreased in the African American population by 13%, while Caucasians have experienced a 65% decrease (3). Likewise, African Americans have seen less of a decline in the number of new AIDS cases diagnosed annually. There is also considerable evidence that many African American men and women living with HIV/AIDS are discovering their seropositive status late in their illness, as 75% of newly diagnosed AIDS cases were among African Americans (2). Page 25 of 133

27 Case Rate (per 100,000) Death Rates among Females with HIV/AIDS by Race, Louisiana, Year of Death African American Hispanic/Latina White Case Rate (per 100,000) Death Rates among Males with HIV/AIDS by Race, Louisiana, Year of Death African American Hispanic/Latino White As shown in the above graphs, death rates in African American females have increased since 1997, while rates among Hispanic/Latina and White females have remained stable and much lower than in African American females. Death rates among African American males are also much higher than in Hispanic/Latino or White males; however, death rates among all males have remained stable over the past decade. Of additional concern is the lower rate at which HIV-infected African-Americans enter primary medical care and remain in a continuum of care. The 2008 Statewide Needs Assessment found that for African American men, lack of transportation, lack of knowledge of available services and inability to pay for services all acted as barriers to care. However, it is striking that while transportation and knowledge of services were in the top three needs identified by African American women, they also noted (13%) that they didn t want anyone to know they are HIV positive more often than White women (9%). Barriers to HIV/AIDS-Related Medical Services in the Last Six Months, African-American Females (N=257) Note: Respondents were permitted to select more than one category, or not answer the question at all; the sum of all categories, therefore, may not meet or may exceed 100%. African-American PLWH/A possess a myriad of other non-medical needs. In the 2008 Statewide Needs Assessment, needs were examined with respect to four sex/race groups: African-American men, African- American women, White men and White women. As compared to other groups, African-American men Page 26 of 133

28 and women were more likely than any other group to report a higher need for housing assistance. African- American women reported needing the greatest number of services overall, including money for rent, utilities, food bank vouchers, transportation, case management, safe sex counseling, help taking medications, home health services, child and respite care. Hispanic/Latino Residents Across the United States the Hispanic population is growing rapidly; this is especially true in Louisiana and the post-hurricane Gulf Coast region, as an estimated 100,000 temporary workers poured into the region to participate in the rebuilding and recovery efforts (23). In the 2006 Louisiana estimated census, Hispanics/Latinos made up 2.9% of the total population. However, assumptions based on outward appearance may lead to inaccurate reporting of racial/ethnic classification among this population, as some individuals may be reported as Caucasians. As of September 30, 2008, 553 Hispanics/Latinos were living with HIV/AIDS in Louisiana, including 452 men and 101 women. Over half of these persons (N=298) have been diagnosed with AIDS. The New Orleans region has the largest percentage of Hispanic/Latino PLWH/A residents (N=284, 51%), followed by the Lake Charles region (N=81, 15%) In 2007, 53 Hispanic/Latino persons were diagnosed with HIV and 38 were diagnosed with AIDS. Region Hispanics/Latinos Living with HIV/AIDS Hispanics/Latinos New HIV Diagnoses 2007 I: New Orleans II: Baton Rouge III: Houma IV: Lafayette V: Lake Charles VI: Alexandria VII: Shreveport VIII: Monroe IX: Slidell/Hammond Although African Americans have the highest HIV diagnosis and AIDS case rates, Hispanic/Latino populations have higher rates than the White population. In 2004, the case rate for Hispanics/Latinos was 20/100,000; by 2006 it had increased to 33/100,000. Overall since 1997, HIV/AIDS rates in the Louisiana Hispanic/Latino population have increased, particularly in Page 27 of 133

29 Case Rate (per 100,000) Trends in HIV Rates among Males by Race Louisiana, Year of HIV Diagnosis African American Hispanic/Latino White Hispanic/Latinos are likely to test late for HIV. Early testing and referral into care can often ensure that individuals diagnosed with HIV are able to benefit from the advances in antiretroviral medications and preventive therapies. Of the 1,052 persons diagnosed with HIV in Louisiana in 2006, 22% had an AIDS diagnosis at the time of their first HIV diagnosis; and 33% of those with an AIDS diagnosis were Hispanic/Latino. Also indicative of testing delays are individuals diagnosed with AIDS within 6 months of HIV diagnosis; in this case, 50% of those progressing to an AIDS diagnoses were Hispanics/Latinos. In 2006, 64% of Hispanics/Latinos with HIV/AIDS were not in care and were less likely to be in care than Whites or African Americans (3). Increases in new HIV diagnoses in the Hispanic/Latino population are particularly evident in the New Orleans region. The rates in Hispanics increased from 2% in 2004 to 6% in 2006 and 9% in The number of new diagnoses in the New Orleans region among Hispanics/Latinos also increased from 19 in 2006 to 34 in 2007 (a 79% increase) (24). Hispanics face special challenges in accessing HIV services. For Spanish monolingual individuals in particular, language can be a potential barrier to receiving and comprehending medical and social services. Social isolation makes it difficult for Hispanics to access traditional prevention education; as a result, disproportionate numbers of Hispanics are becoming infected with HIV and in need of access to primary care. Likewise, an individual s level of acculturation and/or experience with the local system of care can affect one s access to services; not knowing how to navigate the system, including knowledge of services available and how to access them, can result in both delays in accessing care as well as maintenance of care. For areas such as the New Orleans region, monolingual persons and those individuals in the emerging Hispanic population who are unfamiliar with the care system for HIV/AIDS may be experiencing such challenges. Another marked challenge among Hispanics is immigration status. For undocumented immigrants, fear of community rejection and deportation often prevent HIV-infected persons from accessing care. This has become an increasingly prevalent concern over the last year given the national debate on immigration and access of immigrants to public services. Though 98% of 2008 Statewide Needs Assessment respondents report that they are United States citizens, 17 of the 42 (40%) respondents who report not being United States citizens said they are living in the United States illegally. Page 28 of 133

30 Women, Children and Perinatal transmission Women Women continue to be significantly impacted by HIV/AIDS in Louisiana. Almost one-third (31%) of both new HIV and new AIDS cases in 2007 were among women. Among women living with HIV/AIDS, the predominant known mode of transmission is high-risk heterosexual contact, followed by injection drug use. From 1997 to 2006, the proportion of females exposed to HIV through high-risk heterosexual contact increased, while the proportion exposed through injection drug use decreased. In 2007, 35% of women with HIV/AIDS reported exposure to HIV through high-risk heterosexual contact. In addition, in recent years, women newly diagnosed with HIV are older with 62% of diagnoses in 2007 among women 30 years of age and older as compared to 51% in Percentage of Cases Trends in Exposure Categories Females in Louisiana, Injection Drug User (IDU) High-risk Heterosexual Contact Year of HIV Diagnosis Women of color continue to comprise the vast majority of HIV/AIDS cases among women. According to most recent surveillance data from the third quarter of 2008, of the total number of women living with HIV/AIDS in Louisiana (4,764), 84.5% are women of color. In FY 2007 the State of Louisiana passed legislation that requires any physician providing medical care to a pregnant woman to conduct a HIV test unless she specifically declines ( opts out ). While some newly diagnosed women are identified during pregnancy, it is expected that additional individuals will be diagnosed in light of this new law. Women are also less likely to disclose their status. The 2008 Statewide Needs Assessment found that 14% of women as compared to 9% of men have not ever disclosed their status and that 5% of both men and women reported violence as a reaction to disclosure of their status. Page 29 of 133

31 Perinatal Transmission Babies Born to HIV+ Mothers and Perinatal Transmission Rates, Louisiana, Babies born to HIV+ Mothers No. Born to HIV-infected Mothers % Infected Percent HIV Transmission Year of Birth Fewer HIV-infected infants are being born in Louisiana due to the promotion of testing and treatment guidelines to stop perinatal transmission. In 2006, of the 145 babies born to mother with HIV, 2 were diagnosed with HIV (a perinatal transmission rate of 1.4%). In addition, 82% of the 173 infants born to HIV-infected mothers in 2007 were African American. Three infants were perinatally infected with HIV, and all three were African American. In 1994 the perinatal transmission rate in Louisiana was nearly 19%. Many clinicians have adopted the national recommendations to provide HIV counseling and testing to all pregnant women, and there is widespread implementation of the recommended ARV regimens for pregnant women who test positive for HIV. In Louisiana, during , 83% of HIV-infected women giving birth received some antiretroviral therapy (ARVs) during pregnancy; 85% received ARVs during labor and delivery; and 98% of infants known to be HIV-exposed at birth received prophylactic Zidovudine (ZDV) shortly after birth (3). 100% Antiretroviral Treatment by Protocol Louisiana, % Receiving Treatment 80% 60% 40% 20% 0% ARVs During Pregnancy ARVs During Labor/Delivery Neonatal ZDV Treatment Arm All HIV+ Mothers Mothers of Non-Infected Infants Mothers of Infected Infants Page 30 of 133

32 Lack of or late entry into prenatal care is the largest barrier to the prevention of mother to child transmission. In Louisiana in 2005 (as defined by the Kessner index), 84.6% of all women had adequate prenatal care, which means that 15.4% had inadequate prenatal care. For all pregnant women in Louisiana in 2005, 13% entered into care late (late entry into care is defined as entry into care after the first trimester). The rates of first trimester care by race are 92.5% for whites and 78.9% for African- Americans. Of the HIV-infected mothers who delivered between 2004 and 2006, 32% received either no prenatal care or minimal prenatal care (fewer than five visits). This is directly linked to the high preterm birth rates (<37 weeks gestation) for HIV infected women (30.6% in 2004), as opposed to 13.3% of infants born to non-infected mothers. Louisiana s perinatal infection rate has dramatically improved over the past five years. In FY 2007 the State of Louisiana passed legislation (Louisiana RS 40: ) that requires any physician providing medical care to a pregnant woman to conduct an HIV test as a component of her routine prenatal laboratory panel unless she specifically declines ( opts out ) (25). In addition, the law allows physicians to test children born to women whose HIV status is unknown at the time of delivery. Many states have adopted similar laws in an effort to encourage HIV screening as a part of routine prenatal care, as is the current standard for medical care. With appropriate medical care during pregnancy for women with HIV, and prophylactic treatments for perinatally exposed children, mother-to-child transmission can be virtually eliminated. However, the systems in place require on-going education, reinforcement and refinement to continue this trend. This is true in both urban and rural areas of the state where coordination of services is needed to identify and retain women in care. OPH-HAP has made a concentrated effort to institutionalize the testing guidelines into the general prenatal care practices of Louisiana physicians by routinely visiting birthing facilities throughout Louisiana to promote the need for rapid HIV testing for women who present at Labor and Delivery with no prenatal care and/or no documented HIV test on file. Unfortunately, not all delivery centers have fully implemented this protocol as a Standard of Care. These gaps in care represent missed opportunities to provide prophylactic interventions in Labor and Delivery or to the child after birth. This is a concern since the potential lost linkage with pediatric care once the child is delivered is evidenced by a lack of follow up testing in children who were perinatally exposed. It is believed that some women do not disclose this information to pediatricians due to fear of discrimination, discontinued services or breaches of confidentiality. Poor linkages with pediatric providers result in additional missed opportunities to provide the child with appropriate prophylactic therapies to reduce HIV transmission and the risk of other infections. HIV-Positive Children As of September 30, 2007, 83 children younger than age 13 were living with HIV/AIDS in Louisiana. Ten of those children have an AIDS diagnosis. In 2007, 4 children were newly diagnosed with HIV. While the number of children living with HIV is relatively small, there are specific issues that affect this sub-group, particularly in terms of medication adherence. In one US study, 43% of people caring for a child receiving treatment reported at least one missed dose in the past week (26). The significant needs of women and children extend beyond medical care and medications as many of the families impacted by HIV possess limited resources. Management of the complex medical and social problems of families affected by HIV requires a multidisciplinary case management team, and the integration of medical, social, mental health and educational services. The receipt of ancillary services such as case management, transportation and mental health services has been shown to have a positive association with the health outcomes of women and children (24). Page 31 of 133

33 Incarcerated Persons Persons entering correctional systems across America are six times more likely to be infected with HIV than persons not incarcerated (27). Each year, almost 25% of all PLWH/A will enter a correctional system in America (28,29). The Bureau of Justice Statistics has documented that Louisiana has the highest rate of imprisonment in the United States (814 per 100,000). Louisiana's incarceration rate is 67% higher than the national rate (486 per 100,000) and that rate has grown 285% in the last twenty years (30). Based on data published by the Women s Prison Association, with 103 female prisoners per 100,000 female residents, Louisiana also had the third highest female imprisonment rate in the nation. Between 1977 and 2004, Louisiana s female prison population grew by 1000%, and, in the 1990s, Louisiana was almost twice as punitive as the average state in its female imprisonment rate. The Louisiana Department of Public Safety and Corrections (DPS&C) comprises one federal prison, eleven state prisons, 64 parish (county) jails, four juvenile correction centers, approximately 60 detention centers and several half-way houses. According to the Louisiana DPS&C, on December 31, 2007, there were 37,298 offenders incarcerated throughout the state. Of these, 20,263 adult inmates were incarcerated in one of the 11 State correctional facilities and an additional 17,035 adults sentenced to the Department s custody but housed in local jails. Nearly 7% (2,498) were female; 46% of these women were incarcerated at the Louisiana Correctional Institute for Women (LCIW). The statistics for the overall inmate population indicate that a majority (70%) of the offenders are African American and 29% are Caucasian, but interestingly, there is almost an exact 50/50 split between race demography among female inmates. The majority of all inmates (62%) are between the ages of 25 and 44. According to the National Association of State Budget Officers (31), corrections spending in Louisiana stood at $729 million in 2004, $619 million of which came from general funds. Louisiana prison spending consumes 9.5% of state general fund dollars, which is higher than most other states, while 15% of state general funds are spent on higher education. The Justice Policy Institute has shown that, over the last two decades, general fund spending on corrections in Louisiana grew at twice the rate of general fund spending on higher education. Researchers have found that the factors that put people at risk for HIV transmission and the factors that put them at risk for incarceration are largely the same behaviors (29,32,33). However, the extent of HIV in the state prison system is largely unknown, as inmates have not been systematically tested upon entry into the state system. As of January 2009, the Louisiana Department of Corrections (which covers all state prisons) and Orleans Parish Prison will begin phasing in opt-out testing during intake for all new inmates. In addition, as January 2008 the following prisons and jails offer HIV counseling and testing upon request: Orleans Parish Prison East Baton Rouge Prison Ascension Parish Prison West Baton Rouge Parish Prison Jefferson Parish Probation and Parole Shreveport Probation and Parole Wade Correctional Center Dequincy City Jail Jennings Jail Sulpher Jail Orleans Probation and Parole LCIW Page 32 of 133

34 HIV counseling and testing and referral into care can be particularly difficult at the parish prison-level since an individual can be arrested, spend a few nights in jail, and then get released. Therefore tracking infected inmates within the parish jail system is especially problematic. Little data exists for HIV prevalence rates among Louisiana inmates. The Louisiana DPS&C reports that at the end of 2007, 536 PLWH/A were incarcerated at State facilities. That number has held fairly constant over the years, as evidenced in the following table with data from March of 2008 which indicates a slight reduction to 520 HIV-infected persons. According to DPS&C, 6% of incarcerated HIV-infected prisoners were female. Although many inmates know their HIV status at the time of their incarceration, others learn this news while they are imprisoned. Year New HIV Diagnoses in Louisiana Number Diagnosed at a Correctional Facility Number of PLWH/A Incarcerated According to OPH-HAP surveillance statistics, in 2007, the prevalence rate of HIV in Louisiana state prisons was 2.54% compared to approximately 1% for those high risk individuals tested by DHH. Limited research has been done nationally regarding intra-prison transmission, however several studies have shown that the vast majority of HIV infections occur prior to incarceration and are most frequently due to injection drug use before a person enters a correctional system (28,29,34). Louisiana s prisons and jails are charged with the burden of providing care for persons who are often living with chronic and infectious diseases, as well as those with substance use and mental health issues (28,32,34). In the state of Louisiana 18 of the 64 parishes have HIV/AIDS rates greater than 300 Page 33 of 133

35 PLWH/A per 100,000 persons. Many of the parishes with disproportionate HIV/AIDS prevalence rates have correctional facilities that have reported large numbers of HIV/AIDS cases (3). HIV-positive inmates at four of the eleven state prisons (Louisiana State Penitentiary, LCIW, Dixon Correctional Institute and E. Hunt Correctional Center), with less than 180 days of their sentence remaining, are eligible for pre-release planning with the OHP-HAP Corrections Specialist. The goal is to link them to Ryan White Case Management, ADAP and medical care prior to their release date so there is not a disruption in medical care/medication adherence. The plan is to expand this program to all eleven state correctional facilities in In the past three years 179 HIV-positive inmates have been linked to medical and CM upon their release. Of the 179, three have been linked to services out of state. However, it is important to note that among 2008 Statewide Needs Assessment respondents who were incarcerated in the last 12-months, 40% reported that they did not receive any sort of assistance when released from jail or prison. Type of Assistance Received When Released from Jail/Prison (N=184) The situation in Louisiana prisons and jails underscores the need for the strengthening of enhanced continuity of care programs between correctional systems and community based service providers (including those that promote public health and on-going health care) in Louisiana. These collaborative efforts are especially critical as they relate to pre-release planning for housing options, employment, access to medical care, medications and supportive services. In addition, prevention for positive interventions are an important part of pre-release planning with PLWH/A prisoners. Substance Users According to the Louisiana HIV/AIDS Surveillance Quarterly Report, September 30, 2008, 26% of PLWH/A in Louisiana are injection drug users (IDU) (including men who have sex with men and inject drugs). Among newly diagnosed cases for which a risk exposure was reported (including men who use injection drugs and have sex with men), injection drug use accounted for the mode of transmission in 13% of the newly diagnosed HIV cases and 21% of the newly diagnosed AIDS cases in When surveillance data are adjusted to account for the large proportion of cases which are missing a risk exposure (47% in 2006), IDUs remain an important risk group. After adjusting for missing risk, Page 34 of 133

36 heterosexual IDUs accounted for 14% of newly-diagnosed cases and MSM/IDUs accounted for 6% of all cases in 2006 (3). Percentage of Cases Trends in Exposure Categories Louisiana Adult HIV Cases, Men who have Sex with Men (MSM) Injection drug user (IDU) MSM/IDU High-risk heterosexual contact Year of HIV Diagnosis Due to the illegal nature of this activity, stigma and social repercussions of reporting injection drug use, this behavior may be underreported. In addition, many individuals may not perceive their substance use as a problem and/or fear social or legal ramifications of admitting use. The types of substances used by respondents in the 2008 Statewide Needs Assessments were: 33% alcohol, 9% Crack, 5% prescription drugs and 5% non-prescription drugs. Four percent of respondents to the 2008 Statewide Needs Assessment reported use of injection drugs in the past three months. Of this 4%, 56% shared a needle with others during that same period. In addition, 23% percent of IDUs reported not using a clean needle the last time and thirty-five percent said they did not know where to get clean needles. Although injection drug use is the primary mode of HIV transmission, the use of other substances can greatly affect a person's ability to advocate for and engage in risk reduction activities. Alcohol and drugs lower inhibitions and impair judgment. In fact, a recently released study found that binge drinking -- or the consumption of five or more alcoholic beverages on one occasion -- may be contributing to an increased risk of HIV among MSM in New York City (18). Similar to injection drug use, the prevalence of other substance use may be under reported. For instance, studies have found that Methamphetamine is competing with marijuana, which is considered a gateway drug, as the drug of choice and Meth labs are found principally in isolated, rural communities (35). A significant number of the respondents in the 2008 Statewide Needs Assessment indicated that they have accessed or attempted to access substance use treatment in the past six months. Sixty-two percent of the individuals who stated that they had a substance use problem reported they would most likely use, participate or seek help with self-help groups, individual counseling and group counseling to help with substance use problems. In addition, data from public hospitals across Louisiana indicate that close to 30% of individuals who are HIV-positive also have a substance use or substance use and mental health diagnosis. Page 35 of 133

37 Substance Abuse and Mental Health Diagnoses at 8 Louisiana Public Hospitals 35% 30% 25% 20% 15% 10% 5% 0% Substance abuse Substance abuse and mental health Combined These co-issues can have a strong effect on medication adherence and thus overall health. In a 2002 study, it was found that the strongest predictor of poor HIV medication adherence and, in turn, failure to maintain viral suppression, was active cocaine use (36). What is hopeful is that 62% of substance-using respondents in the 2008 Statewide Needs Assessment expressed a desire to stop. This is further evidence that combined HIV and substance use/mental health interventions in Louisiana are necessary. Youth For Ryan White Modernization Act of 2006 purposes, youth is defined as individuals aged years. As of September 30, 2008, 801 youth were living with HIV/AIDS in Louisiana, which represents 5% of the total PLWH/A in Louisiana. Sexual contact, either heterosexual or male-to-male, is the primary mode of HIV exposure to youth. Of youth PLWH/A with identified transmission risks, 34% are MSM, 14% through heterosexual transmission, and 3% through IDU. Perinatal transmission accounts for 10% of youth PLWH/A. As of September 30, 2008, females represented 43% of the total youth living with HIV, with 57% being males. Eighty-three percent are African-American, 13% are white and 3% are Hispanic or other races. It is remarkable to note that in 2007 of the total new diagnoses for youth, 12% were diagnosed with AIDS at the time of HIV diagnosis, and 17% received an AIDS diagnosis within six months of HIV diagnosis. Youth of today s world face many stressors that can play a part in how they choose to participate in the care of their HIV treatment. Not only are many youth facing physical changes with their bodies that they do not always understand, they also deal with peer pressure, substance use and abuse, mental health concerns and often times unstable family/home situations. A 2005 study involving forty-two HIV-positive youth, ages 16-24, currently taking anti-retroviral medications showed that 66% of participants had missed a dose of medicine within the past week. This study found that higher rates of depression and younger age of first illicit drug use predicted higher rates of non-adherence (37). A similar research study was completed in 2001 and consisted of 161 HIV-positive youth living in 13 US cities. Data collected showed that only 41% of the sample reported full adherence, with 7% of the sample being unable to even correctly identify their prescribed medications. This study also found that higher levels of depression were significantly associated with decreased adherence (38). These studies show that better education, increased support systems, intervention to relieve depression, and efforts to improve ease of medication Page 36 of 133

38 use are essential in helping youth PLWH/A to make better choices in their involvement of their HIV treatment. As the prevalence of HIV infection rises among women of childbearing age, especially among women aged 13-24, the risk of perinatal HIV transmission increases. Pregnancy among this population presents the need for additional specialized care, and current adolescent pregnancy statistics in Louisiana are notable. While teen birth rates have declined considerably since the early 1990 s, Louisiana still ranks the 8th highest among states for the percentage of births to teenagers (18%). The teen birth rate in Louisiana in 2005 was 49.1/1000, significantly higher than the national average in 2005 of 40.5/1000 (39). Poverty and Homelessness Louisiana remains third in the nation for the highest rate of poor residents. People with family incomes below the Federal Poverty Level (FPL) make up 23% of the total state population. Louisiana also ranks 2 nd in the rate of low-income residents 43% of the state s residents have family incomes below 200% FPL. (8) The full impact of Hurricanes Katrina and Rita, and now Gustav and Ike, continue to affect the poor and the level of poverty and homelessness in the state. The Federal Emergency Management Agency (FEMA) reported that 204,700 housing units in Louisiana were destroyed or had major damage by Hurricanes Katrina and Rita (40). The visibility of homeless persons is still apparent 3-years after Hurricane Katrina with an estimated 12,000 homeless in the New Orleans area alone. (41) This level of homelessness is staggering even when considered within the cycle of poverty, disability, poor education and lack of access to healthcare that is systemic in Louisiana. A study completed by Louisiana Action Council for the Homeless requested organizations providing emergency housing or shelter throughout the state to survey all guests during a twenty-four hour period on January 30 th to the 31 st of This study identified 5,994 persons as literally homeless, which is defined as persons who live in emergency shelters or transitional housing for a period of time, or who sleep in places not meant for human habitation (12). Within the 5,994 homeless, 125 persons, or 3.24%, were diagnosed with HIV/AIDS. Furthermore, 29 persons who identified themselves with special needs related to HIV/AIDS met the definition of chronically homeless (2.24% out of 1,293). This survey did not include those unsheltered persons that the point-in-time estimate could not identify for various reasons, e.g. live in rural areas, undocumented, or unwilling to sign a release. The conservative estimate of homeless in the state is more likely around 12,000 children and adults at any given point. Homelessness often afflicts persons living on minimal or non-existent resources. Due to the anonymity and transient nature of this population, it has been difficult to put an exact number on how many homeless people live in the state (12). It is important to note that HIV data for this population is limited as well. However, according to the 2008 Statewide Needs Assessment, 13% of respondents were unable to access HIV/AIDS-related medical care because they were homeless. Page 37 of 133

39 Barriers to Receiving HIV/AIDS-Related Medical Care When Out of Care (N=425) Access to safe, affordable and stable housing is a critical factor in the health and well-being of PLWH/A. There is increasing evidence that housing status is closely related to health behaviors and access to treatment and care among PLWH/A. Research shows that receipt of housing assistance is associated with reduced HIV risk behaviors and improved health outcomes (42). Episodes or a history of homelessness is a strong indication of housing instability and inability to maintain housing. In the 2008 Statewide Needs Assessment a total of 406 survey respondents (28%) reported spending at least one night without a place to sleep. More than 16% of respondents indicated they had spent 31 or more days without a place of their own in which to sleep 3. Nights Spent Homeless or Without a Place to Sleep (N=1435) 3 The wording of this question could include anyone staying with another person, family, etc., and may not reliably indicate homelessness episodes. Page 38 of 133

40 As has been evidenced by a New York study, formerly homeless individuals accessing supportive housing were four times more likely to engage in primary medical care than were individuals who only accessed case management services (43). Stable housing was also shown to increase the possibility of being prescribed anti-retroviral medications. Those who received housing assistance were 2.5 times more likely to retain appropriate medical care as those who did not receive the assistance. (44,45) Improved housing status not only improves access to appropriate medical care, but medications adherence as well, which is linked to lower viral loads and reduced mortality. The all-cause death rate among homeless persons is five times the death rate among housed persons with HIV/AIDS (42,43). Rural Residents Rural residents face an abundance of challenges when attempting to access services within their communities. Of the PLWH/A known to be living in Louisiana as of January 2006, 12% resided in rural areas. Rural residents are less likely to have employer-provided health care coverage or prescription drug coverage, and the rural poor are less likely to be covered by Medicaid benefits than their urban counterparts (46). Additionally, rural residents tend to be poorer. On the average, per capita income is $7,417 lower than in urban areas, and rural Americas are more likely to live below the poverty level. The disparity in income is even greater for minorities living in rural areas (46). In Louisiana s rural areas, 23.7% of residents live below 100% of the FPL (47). The most evident unmet need for rural residents continues to be access to primary medical care. Areas in all 40 rural parishes in Louisiana are designated as a health professional shortage area by the federal Shortage Designation Branch and the patient to physician ratio in rural areas is 1925:1 compared to 870:1 in urban Louisiana (42). Shortages of primary care physicians, nurses, allied health professionals, mental health professionals and dental health professionals contribute negatively to Louisiana s rural health care systems (43). Statistics show that an average of 68% of individuals living in rural communities were able to access medical care on a routine basis, as compared to the overall statewide percentage of 86% (2). Although there is at least one primary medical center in each DHH region of the state, all are located in the urban, metropolitan center of that region. Thus, rural residents are required to travel in order to receive HIV-specific primary medical care. In addition, confidentiality concerns contribute to an apprehension in seeking primary medical care. Fear of disclosure in small rural communities and the stigma associated with HIV infection is magnified in the more rural communities where individuals tend to know each other more personally. Transportation to medical care can be problematic for rural residents. Often lack of transportation is a barrier to traveling to the more urban areas for medical care, routine labs and ADAP medications that are typically located in the medical centers in the urban areas. On the 2008 Statewide Needs Assessment, 24% of respondents reported that they did not know where to get transportation services. Page 39 of 133

41 Barriers to Accessing HIV/AIDS-Related Transportation Services in the Last Six Months (N=1092) While fifty-nine percent of 2008 Statewide Needs Assessment respondents stated that they pay for their own transportation services, not surprisingly 39% reported the cost of transportation as a barrier to getting to places in general. Barriers to Getting Places in General (N=1074) Due to low PLWH/A patient census, general practitioners may also lack specific training in the particular needs of PLWH/A, including medical management of HIV/AIDS and knowledge of current antiretroviral medications. Other factors that significantly affect rural communities are the lack of knowledge of available services including HIV testing and counseling, high incidence of alcohol and tobacco use (42,46,47) and shortages in service providers, as well as issues of poverty often seen in the more rural areas of the state, such as underemployment and under education. Adults Age 50 and Older Page 40 of 133

42 As treatments for PLWH/A have successfully reduced mortality, there is a growing population of older adults who have been living with the virus for many years. They constitute a significant portion of PLWH/A in Louisiana, and they present issues that differ from younger PLWH/A issues especially related to the cost of providing care. The sub-group of adult PLWH/A 50 and older include not only long time survivors, but a significant number of individuals who are newly diagnosed. According to the Louisiana surveillance report for the third quarter 2008, data suggest that both prevention efforts for individuals 50 and over and treatment and support must be well integrated into efforts addressing the HIV/AIDS epidemic. It appears from the data that three groups warrant closer attention: 1. individuals infected and diagnosed at a younger age who have survived due to the effectiveness of highly active antiretroviral therapy (HAART) interventions 2. individuals who were infected at a younger age but were not diagnosed until much older 3. individuals who are becoming newly infected through high risk exposures at an older age. Those age 50 and older are now an emerging risk group. PLWH/A age 50 and older constitute 27% of the PLWH/A in Louisiana for the third quarter of The number of PLWH/A 50 and older increased from 2,807 in 2005 to 4,315 for the third quarter of PLWH/A age 50 and older are predominantly male (80%). According to surveillance data, a high percentage of these individuals are diagnosed late. In 2007, 40% of persons 50 and older newly diagnosed with HIV had AIDS at the time of their diagnosis, compared to only 24% of persons younger than 50. Clinic trends indicate that they tend to be in care to a greater extent than younger cohorts. The cost and complexity of providing care to the older PLWH/A sub-group rises dramatically as individuals increasingly need specialty care. This means that, in addition to HIV care, clinicians must also provide screening and treatment for a variety of co-morbidities that relate to aging including hypertension, cirrhosis, renal disease, bone loss, obesity and cardiovascular issues such as stroke and myocardial infarction. Screening for prostate, colon and breast cancer is also standard for persons in this age group. Additional health education efforts must be provided for issues such as menopause and diabetes management. Older adults also generally require more extensive dental care including dentures and oral surgery. Co-management of these conditions complicates HIV treatment. Co-morbid conditions may be especially challenging with regard to drug metabolism and interaction with HIV medications. The effects of polypharmacy 4 may suggest a unique clinical course as opposed to those infected with or living with HIV at a younger age. In addition, the effects of HIV and of ARVs on older individuals are not well known and these distinguishing factors may have both clinical and prognostic implications which will have to be taken into consideration in treatment and care efforts. Prevention and treatment and service models must also consider the denial of risk among older adults, the additional stigma of ageism and the often increased isolation that occurs with aging, as well as access to 4 Polypharmacy is taking several different medications at the same time. This is a concern with possible drug-to-drug interactions that may occur, as well as, its impact on adherence. Page 41 of 133

43 limited care issues for the uninsured and underinsured. Efforts must be investigated that partner with other senior-serving programs to address this complex set of needs. HIV/Hep C Co-infected Persons Hepatitis C (HCV) is a life long infection for the vast majority of those who acquire it, and may take decades to cause serious liver damage if it progresses to cirrhosis or liver cancer. HCV is the leading cause of liver transplantation in the U.S. The CDC reports that one quarter of HIV infected persons are also infected with HCV and an estimated 90% of persons infected with HIV through IDU are also infected with HCV (48). Transmission modes for people identified as co-infected with HIV and Hepatitis C, Louisiana 2007 An estimated 500 people are infected with HCV each year in Louisiana and an estimated 80,000 people in Louisiana (1.8% of the population) have been cumulatively infected with HCV. Of these people, 68,000 will go on to develop chronic hepatitis, and 13,000 will progress to cirrhosis which has a 25% fatality rate. Annually 120 Louisiana residents are expected to die from HCV. About 4,000 (5% of those infected by HCV) are candidates for a liver transplant, which costs an estimated $300,000 for a non-eventful, uncomplicated procedure (49). HCV and HIV co-infection results in an accelerated progression to end-stage liver disease when compared with individuals infected with HCV alone. While treatment of co-occurring HIV and HCV presents challenges, treatment during the acute phase of HCV infection (within 6 to 12 months of detection) can be effective in controlling the virus. Therefore it is important for HIV patients to be screened for HCV early in their diagnosis (50). Page 42 of 133

44 HCV is rare among children; however, case rates increase after nineteen years of age. The highest rates for both males and females are seen in the thirty-five to forty-four year old age groups. In all age groups, incidence is higher among males (71% of all cases) than females. The highest incidence of acute hepatitis is seen in African-American males between the ages of thirty-five and fifty-four years. The geographical distribution of HCV in Louisiana shows higher rates in urban centers (greater New Orleans, Baton Rouge, Lake Charles, Shreveport and Monroe). Orleans and Washington parishes have the highest rates. Although some rural parishes have high infection rates, they actually have very few cases; their rates are high because their population counts are low (49). These demographic characteristics are quite similar to the demographics of persons who are also living with HIV/AIDS. HIV and HCV co-infected patients present some special needs. They are more likely to be males in need of treatment for addictions. Many patients who are receiving treatment will need increased access to mental health services because of the high rate of depression associated with pegylated interferon plus ribavirin therapy. Treatment of HCV can last for more than a year for some patients. The side effects of the treatment will be harder for some to tolerate than others. Many times the side effects can make working difficult. Also, some antiretroviral regimens may interfere with HCV treatment. Therefore, it is important that the entire medical team collaborate to ensure proper management and well being of the coinfected patient. Emerging Populations- Transgendered In addition to the emerging populations mentioned at the beginning of this section that warrant future monitoring, transgendered individuals have emerged in last few years as a group of persons at risk for acquiring HIV-infection but for whom significant data and information is still missing. Very little is known about HIV in the transgender population in Louisiana. It is only recently that information has been gathered through HIV testing and little is documented in patient medical charts. We can only rely on national data and assume it is reflective of the situation in Louisiana. Findings from various needs assessment and behavioral risk studies have reported HIV prevalence in transgender women as ranging from 14% in San Juan (51); 19% in Philadelphia (52); 21% in Chicago (53); 22% in Los Angeles (54); 27% in Houston (55); 32% in Washington, DC (56); and 26%, 35% and 47% in San Francisco (57-59). Transgender women sex workers are at particularly high risk, since they are often financially induced to engage in barrier-free sex (58,59,61). A study of transgender sex workers in Atlanta funded by the CDC found a 68% seroprevalence rate (61). Although significantly under-examined, HIV prevalence in transgender men was found to be 3% in Washington, DC (56) and 2% in San Francisco (59). There is also evidence to suggest that male-to-female transyouth of color may be disproportionately impacted by the AIDS epidemic in the U.S. (61). Page 43 of 133

45 Chapter 5: Unmet Need Estimate/Gaps in care/prevention Needs Louisiana has calculated overall unmet need estimates for the State and for the Part A New Orleans EMA and Baton Rouge TGA for the past three years using the unmet need framework developed by University of California, San Francisco (UCSF) and HRSA. Louisiana s Sanitary Code requires that laboratories report all test results indicative of HIV infection for persons residing in Louisiana. Laboratory data can be used to assess whether a person is in care or not in care during a specified time period. Persons who had at least one CD4 test or viral load conducted during 2007 are considered to have been in care during that year. Unmet Need for Primary Medical Care Louisiana, 2007 Percent in Care Percent not in Care (Unmet Need) Overall 57% 43% Persons living with HIV 42% 58% Persons living with AIDS 70% 30% Sex Female 60% 40% Male 55% 46% Race/Ethnicity African American 56% 44% Hispanic/Latino 41% 59% White 60% 40% Age Group <13 67% 20% % 28% % 47% % 45% % 42% Public Health Region I: New Orleans 49% 51% II: Baton Rouge 64% 36% III: Houma 70% 30% IV: Lafayette 59% 41% V: Lake Charles 48% 52% VI: Alexandria 60% 40% VII: Shreveport 56% 44% VIII: Monroe 60% 40% IX: Hammond/Slidell 66% 34% Of the PLWH/A in Louisiana at the end of 2007, 57% had at least one primary medical care visit. Persons with AIDS were significantly more likely to be in care than persons with HIV. Unmet need was higher in males compared to females and in persons older than 19. Hispanic persons were less likely to be in care than whites or African Americans. The New Orleans and Lake Charles regions had the highest unmet need, and the Houma and Hammond/Slidell regions had the lowest unmet need. Page 44 of 133

46 Estimated Impact of Hurricane Katrina on PLWH/A in the New Orleans Metropolitan Area: November 2008 On August 29, 2005, Hurricane Katrina made landfall and had a devastating impact on the New Orleans metropolitan area, which includes Orleans, Jefferson, St. Tammany, St. James, St. John the Baptist, Plaquemines, St. Bernard and St. Charles Parishes. Most of this area was placed under a mandatory evacuation displacing hundreds of thousands of people, many of whom continue to be unable to return to their homes. The hurricane seriously disrupted public health efforts, including HIV/AIDS prevention, services and surveillance. Because such a large percentage of the HIV-infected population became displaced, prevalence information from the HIV/AIDS Program (HAP) Surveillance database was no longer accurate. Instead, HAP developed HIV prevalence estimates for the New Orleans MSA in August 2006 based on HIV surveillance information on current residence collected on PLWH/A who were New Orleans residents prior to evacuation (in July 2005). By viewing cases with a confirmed current residence as a sample of the total population who had contact with the surveillance system, current residency was estimated as a proportional change. This method was repeated in 2007 and 2008 to estimate the rate of return in Orleans Parish. Since August 2006, the rate of return has increased steadily in Orleans Parish to just under 70% of the pre-katrina estimate. Estimated Number of PLWH/A in Orleans Parish surveillance population #PLWH/A % Return 0 August March August February October May Nov In terms of the larger New Orleans MSA, in July 2005, 7068 PLWH/A were living area. As of November 2008, 2749 or 39% of pre-katrina numbers were residing in the New Orleans MSA and are verified in the OPH-HAP surveillance system. Based on this 2749, it is estimated that there are a total of 5929 PLWH/A residing in the New Orleans MSA as of November Page 45 of 133

47 Estimated PLWH/A in New Orleans MSA November 2008 Parish PLWH/A 2005 PLWH/A w/ info Current residents Estimated Return New Diagnoses Estimated Prevalence Orleans % Jefferson % St Tammany % St Bernard % Plaquemines % 5 27 St Charles % St John % St James % 6 66 Total These estimates are based on several assumptions about the return of PLWH/A. For example, populationbased methods assume that the PLWH/A have returned at rates no different than the general population; however, concerns such as access to care, location of residence and socioeconomic factors could all influence the likelihood of return in PLWH/A differently than the general population. While these estimates are time-sensitive given the rapidly changing landscape of New Orleans, they have provided essential data for planning HIV prevention and services since Hurricanes Katrina and Rita. Page 46 of 133

48 Chapter 6: Needs, Barriers and Recommendations The 2009 SCSN Needs Work Group identified ten service categories most needed to maintain and increase the health and well-being of those in Louisiana living with HIV/AIDS: primary medical care, housing assistance, transportation, medications, mental health, substance use care and treatment, nutritional assistance, medical case management, oral health care and education. For each need, barriers to accessing the service are addressed. While the barriers listed below are divided by service, many of the barriers hold true for more than one service, and in some cases for all of the other categories. Committee members also summarized lists of recommendations to assist service providers in planning and implementing current and future services. The ten particular services identified during the 2008 Statewide Needs Assessment process mirror the six core service categories established during the reauthorization of the Ryan White HIV/AIDS Treatment and Modernization Act of 2006, and they are also very similar to the needs identified during the SCSN process in When reviewing the 2008 Statewide Needs Assessment, although the greatest unmet need is evident in oral health care services (26%), it is important to note that even in this category over 70% of respondents reported no unmet need. Similarly, respondents overwhelmingly reported ability to access core services with low unmet need rates in general medical care services (11%), medication access services (9%), specialty care services (12%) and case management services (14%). Summary of Major 2008 Statewide Needs Assessment Findings In addition to the demographic profile of 2008 Statewide Needs Assessment respondents shown at the beginning of this document; the following is a summary of select findings. Demographic and Background Information Forty-six percent of respondents are HIV positive with no symptoms. Seventy-two percent of the respondents have been HIV positive for at least five years. Eighty-two percent of respondents were living in Louisiana at the time of their HIV diagnosis. Sixty percent of respondents are single or living alone. Ninety-eight percent of respondents are U.S. citizens. Fifty-nine percent of respondents have some type of health insurance. The most commonly reported sources of insurance are Medicaid (60%), Medicare (40%), and then coverage through work (9%). For those without, the most identified barrier to getting insurance is that it is unaffordable. Fifty-eight percent of respondents are not working. Sixty-two percent of those not working are on disability. Sixty-six percent of respondents have a total-household monthly income of $1000 or less. Forty-two percent of respondents receive food stamps. Eleven percent say they do not have enough food to eat and that this stops them from taking care of their HIV/AIDs. Primary Medical Care Dental and eye care are the most identified unmet HIV/AIDS-related medical service need. Page 47 of 133

49 The top three barriers to receiving HIV/AIDS-related medical services are lack of transportation, lack of knowledge about where to get services and lack of funds to pay for services. Eighty percent of respondents have sought HIV/AIDS medical care in the last six months. Seventy-eight percent of those who sought HIV/AIDS medical care said they received enough care. Most respondents (61%) regularly receive HIV/AIDS-related medical care in an HIV clinic in a hospital. The top three reported reasons for not seeking HIV/AIDS-related medical care are lack of knowledge about where to get care, not feeling sick and feeling depressed. Sixty-six percent of respondents always take their medications. The top three reasons for not taking medications are that they make the respondent feel bad, respondents have trouble remembering to take them or respondents don t like taking the medications. Thirty-two percent of respondents report being out of treatment for at least 12 months. The most commonly reported reason for being out of care is not being ready to deal with their HIV status. Of those respondents who have been pregnant in the last 12 months, 80% had received medications to prevent transmission of HIV to their child. Housing The three most identified barriers to receiving HIV/AIDS-related housing services are that respondents do not know where to get services, don t qualify for services, or were put on a waiting list. The top two unmet HIV/AIDS-related housing service needs are money to pay utilities and money to pay the rent. Forty-nine percent of respondents have lived in their current residence for less than a year. Fourteen percent of respondents did not have enough money to pay rent and say that this stops them from taking care of their HIV/AIDS. Twenty-six percent of respondents say they have had problems obtaining housing in the last six months. The most commonly identified barriers to obtaining housing include not having enough money for the deposit, being unable to find affordable housing, and lacking transportation to search for housing. Twenty-eight percent of respondents have spent at least one night without a place to sleep in the last year. Eighty-four percent of respondents are not receiving any kind of monthly housing subsidy. The mean monthly rent for respondents is $ Eleven percent of respondents were incarcerated in the past 12 months. Of these respondents, 82% said they received HIV/AIDS medical care while in prison or jail. However, 40% said they received no referrals to medical care or case management, HIV medications, or information about finding housing upon being released. Childcare Twenty-eight percent of respondents have children under the age of 18 living with them. The top two reasons for needing childcare services are to rest and to go to a doctor or social service appointment. Page 48 of 133

50 The top two barriers to accessing childcare services are lack of knowledge about where to get childcare services and lack of funds to pay for childcare services. Transportation The top three barriers to accessing HIV/AIDS-related transportation services in the last six months are that respondents didn t know where to get services, the agency ran out of money and respondents did not want anyone to know their HIV/AIDS status. The top three barriers to getting places in general are not being able to afford transportation, being without personal transportation and living too far to walk or bike. The two greatest unmet HIV/AIDS-related transportation service needs are to run errands and to get to other services. The top three means of transportation to HIV/AIDS services are personal car, bus and a ride from a friend. Fifty-nine percent of respondents pay for their own transportation services. Mental Health and Substance Use Very few respondents (<7%) indicate an unmet mental health or substance use need. About half of respondents report having little interest or pleasure or doing things and feeling down, depressed or hopeless during the last two weeks. Thirty-two percent of respondents have received mental health services in the last six months. Thirty-three percent of respondents have received prescriptions for mental health reasons. Ten percent of respondents have received treatment for substance use in the past six months. Thirty- two percent of respondents report drinking alcohol in the past six months. Twenty-eight percent report not using any substances in the past six months. Sixty-two percent of substance-using respondents express a desire to stop using. Four percent of respondents have used injection drugs in the past three months. Of these respondents, fifty-six percent shared a needle with others in the last three months. Twenty-three percent of IDUs report not using a clean needle the last time and thirty-five percent say they do not know where to get clean needles. Other Services Financial assistance with utilities and other critical needs are the two most identified other service needs. The top three most mentioned barriers to HIV/AIDS-related services early in HIV diagnosis are that the respondent didn t know where to go, felt healthy (tie), wasn t ready (tie) and didn t want anyone to know that s/he was HIV positive (tie). Support Services The most commonly reported unmet support service need is food bank/food vouchers. The top barrier to accessing support services is lack of knowledge about where to get services. Over half of the respondents have disclosed their HIV status within one month of their HIV diagnosis. Sixty percent report they did not disclose earlier out of fear of rejection. Page 49 of 133

51 Sixty-one percent of respondents have disclosed their HIV status to their family. Eighty-one percent report having family or friends they could count on for help. Positive Prevention Very few respondents overall (<5%) report an unmet HIV/AIDS-related prevention service need. The most identified source of HIV/AIDS information is a doctor or other health care provider (77% of respondents), followed by HIV/AIDS service providers (40%). Fifty-four percent of respondents report being sexually active in the last three months. Twenty-six percent of those who are sexually active report having two or more partners. Seventy-seven percent of sexually active respondents report using a condom the last time they had sex. Fourteen percent of respondents report that they never use a condom with a male partner and nine percent never use a condom with a female partner. Ambulatory/Outpatient Medical Care Need: The 2008 Statewide Needs Assessment indicates that PLWH/A identified primary medical care as one of the most often needed and utilized services (74%) which is similar (84%) to the previous Ryan White Title I and II Statewide HIV/AIDS Needs Report 2004 (future referenced as the 2004 Needs Report). Respondents also prioritized primary medical care as the most important service need. Most of these individuals (61%) reported having accessed HIV/AIDS services from public medical providers. The LSU HCSD operates seven publicly funded HIV outpatient clinics across the state, and LSU-Shreveport oversees the three HIV clinics that provide services in Shreveport, Monroe and Pineville. While Ryan White Parts A, B and D may contribute a portion of funding for primary medical care, after State funds and federal reimbursements through Medicare and Medicaid, Part C is the next major supporter of primary medical care in the urban areas of New Orleans, Baton Rouge, Lake Charles, Alexandria, Shreveport and Monroe. The majority (80%) of respondents in the 2008 Statewide Needs Assessment sought medical care within the last six months. At least 87% of respondents indicated that they sought medical treatment within the first six months of a positive HIV diagnosis. Of those, 78% responded they received enough care and 18% indicated they received medical care but needed more services than were available. This is nearly double the number who reported a need for more services on the 2004 Needs Assessment. It is clear that increased access to, and continued improved availability of, primary medical care is a critical need of PLWH/A. Furthermore, respondents noted that the most important change necessary to improve services to HIV/AIDS consumers is easier access to more or better medical care. Medical treatment and referral to medical treatment continue to be top priorities, as well as the need for additional funds for medical care. Some of this need is exacerbated by the lack of Ryan White Part C funds in several large and predominantly rural regions of the state (the Houma/Thibodaux area, greater Lafayette and the Northshore of Lake Pontchartrain). Medical facilities in and around New Orleans continue to be overwhelmed by current client needs. It is estimated that there are many more people who are ill than there are doctors, nurses, beds and equipment to take care of them." (63,64). According to the Louisiana DHH prior to Katrina there were 1,574 primary care physicians licensed in New Orleans. As of the Spring of 2007, just 460 are practicing, and many of them do not treat the Page 50 of 133

52 uninsured (65). As a result of the loss of hospital capacity in Louisiana due to the damage wrought by Hurricanes Katrina and Rita (and later by Hurricanes Gustav and Ike), city residents have had to seek care at suburban hospitals, which have also seen demand exceed capacity. In addition as detailed in the graph above, in New Orleans long-term and psychiatric hospitals, hospices and rehabilitation centers are now limited to 57% of their pre-storm presence as of February Many medical facilities are in a state of rebuilding throughout the impacted areas and most are experiencing significant staffing shortages (63). Access to Primary Medical Care Even though each region has a publicly-funded ambulatory care program in its urban center, access is limited for many PLWH/A. On the 2008 Statewide Needs Assessment 72% of those surveyed had been living with HIV for 5 years or more and 32% report that they have been out of treatment for at least 12 months. Percentage of Respondents HIV Positive for At Least Five Years Who Have Been Out of Treatment for at Least 12 Months (N=1189) For those not in care, 28% of respondents reported that they were not ready to deal with their HIV Page 51 of 133

53 status, 19% indicated that they did not want others to know their status, and 18% reported using drugs or alcohol. Interestingly enough, three years after the devastation wrought by Hurricanes Katrina and Rita, 16% of respondents reported that they were still being affected by the aftermath caused by the storm. Those issues included homelessness, mental health issues, and the reality that too many other issues took precedence over health. Barriers to Receiving HIV/AIDS-Related Medical Care When Out of Care (N=425) In sum, data shows that two major themes pose challenges to individuals in getting the HIV medical services they need to manage their HIV disease. Aside from disruptions to care as a result of the hurricanes, limited knowledge of services is a persistent barrier for PLWHA, including knowledge about the availability of services, eligibility and access points. Another challenge area is related to psychosocial needs, supported by data indicating barriers such as readiness to deal with one s HIV disease and coping skills to address stress. Barriers: During group discussions, PLWH/A and providers identified the following issues concerning access to primary medical care and the quality of these services. Medical care is difficult to access for those who reside in rural areas. Specialty care for PLWH/A, especially obstetrics/gynecology, neurology, orthopedics, cardiology, dermatology, renal and oncology services has always been limited and have become even more so as specialists are limited and dispersed around the state. Lack of a strong referral system can delay access to pertinent medical care and medications. Several clinics around the state are open limited days and times. There are several areas of the state that could benefit from Ryan White Part C funding and services. HIV care is complex and evolving. Some general practitioners may be reluctant to treat HIV/AIDS patients or treat them on a limited basis. These low volume practitioners may possess less training, experience and hands-on knowledge. Lack of transportation has become a significant barrier in rural areas and with clients who have been displaced from one of the Hurricanes and/or have lost their vehicles and other possessions. Despite intensive efforts, there is still a degree of inconsistency in the HIV screening of pregnant women. Page 52 of 133

54 Recommendations: Strengthen the linkage between OPH and LSU HCSD facilities implementing emergency department screening for HIV infection to assure early entry into care for newly identified persons. Encourage providers to establish alternate hours of operation that are convenient to the working public. Integrate family planning, STD and gynecological services, as well as other appropriate specialized services, into HIV care provision as resources allow. Expand the capacity of all HIV-specific outpatient clinics to serve PLWH/A in all regions and accommodate the increasing volume of patients. Encourage and assist providers to obtain funding from sources other than Ryan White to provide needed assistance to clients. Provide technical assistance through Delta AETC for clinicians with limited experience in the state-ofthe-art treatment and management of HIV/AIDS. More training on basic HIV care, as well as in the elimination of perinatal transmission, would be beneficial. Provide HIV counseling and testing to all pregnant women unless they refuse as per the current Louisiana law. Strengthen relationships with community members that work with HIV-positive pregnant women in order to increase referrals to, and access to, appropriate services for pregnant women and children. Promote the development of a preparedness plan for all clients and case managers, and for those not accessing case management services, their primary care physician Make available updated medical information that address new therapeutic options, managing antiretroviral resistance patterns, adverse drug reactions and interactions, and methods of increasing adherence to medications. Utilize genotypic and phenotypic resistance testing when clinically appropriate to avoid the prescription of medications which the individual s virus may be resistant to. Continue linkages with the prison system to expand testing to all prisoners in state prisons and jails; additionally, establish linkages for referral upon release. Improve access for rural areas of the state through utilization of mobile health units that have the capacity to provide HIV services. Continue to identify providers in rural and Hurricane-affected areas, with additional links to supportive social services, such as transportation, to assure increased and consistent access. Additionally, utilize telemedicine in rural areas to maximize efficiency in care delivery. Strengthen the existing referral system by facilitating regional meetings to assure linkage between prevention education, STD screening, HIV counseling and testing sites, primary medical care and specialty care. This would facilitate the early entry and maintenance of all PLWH/A into a comprehensive continuum of medical care and supportive social services. Adhere to standard Quality Management and Continuous Quality Improvement (CQI) indicators. Housing Assistance Need: As was noted in the Populations section, safe, affordable and stable housing is a critical factor in the health and well-being of PLWH/A. The 2008 Statewide Needs Assessment provides further information about the way in which housing-related issues are currently impacting the lives of PLWH/A in Louisiana. A significant percentage of survey respondents indicated that they needed--but either could not get or did not know about--a number of housing-related services, including help with rent (35%), utilities (36%), Page 53 of 133

55 help in finding a place to live (21%), and permanent independent housing (25%). Additionally, more than one quarter (26%) of respondents reported having problems obtaining housing, and identified multiple barriers to this critical resource. Need and Use of HIV/AIDS-Related Housing Services in the Last Six Months Hurricane Crises and Recovery In 2005, Hurricanes Katrina and Rita caused the largest displacement of people in the United States with close to a million Louisianans forced from their homes. This displacement generated an unprecedented need for housing assistance, including emergency shelter, temporary housing and longer-term help for people months or years away from returning to their homes. The displacement caused by 2008 Hurricanes Gustav and Ike was not as significant as from the earlier storms, but nonetheless adversely impacted PLWH/A and increased the overall statewide housing need. The housing crisis in the extended New Orleans area is grave and relief for this situation has been very slow. The area sustained massive loss of public housing units, Section 8 housing and other affordable rental housing. In spite of many efforts underway, including GO Zone Tax Credit developments and the Road Home rental housing repair program, the severe lack of housing is impacting people across the entire income spectrum. Lack of affordable housing and surging rents have squeezed the rental market, leaving the poorest citizens, including low-income people with HIV/AIDS, virtually without housing options. As an example, the Fair Market Rent (FMR) for a one bedroom apartment has risen from $531 in 2004 to $846 in 2008, far above the affordable level for lower income consumers. A housing needs assessment conducted in February 2008 by the Louisiana Housing Finance Agency cited multiple examples of the housing difficulties being experienced by low-income residents in the New Orleans Metro area and across the state, including the following (66): Before Hurricane Katrina, the average rent for a 2-bedroom apartment was less than $700, meaning more than two-thirds of all rentals were affordable to low income households. Now, less than 20% of all such units rent for less than $700 per month. Page 54 of 133

56 Although the GO Zone Tax Credit program has approved 10,654 low-income units in the New Orleans metro area, only 327 units had been placed in service as of February Serious delays in project closing and unit construction are being experienced and are expected to continue. The GO Zone and Road Home Small Rental Repair program will repair or replace approximately 23,000 affordable rental units in the New Orleans area. This is less than half of the 52,000 affordable rental units lost in the storm. Additional rental units needed are estimated to be 29,000 50,000 for New Orleans and 60,000 to 80,000 for the State of Louisiana. The rental housing market pre-katrina had 9,900 occupied units affordable to those earning less than 30% of the annual medium income (AMI). Current efforts of Community Development Block Grant (CDBG) and GO Zone will result in 4,400 subsidized units affordable to households earning $15,000 per year, far less than half of the units occupied pre-katrina. With an estimated 19.2% of individuals in Louisiana living below the poverty level (67), the shortage of affordable and subsidized rental housing has a tremendously negative impact Statewide Needs Assessment Survey Results and Access to Housing Assistance When asked about their current housing situation, 65% of respondents indicated that they own (23%) or rent (42%) their own apartment/house/trailer. Other living arrangements included 23% staying in someone else s place or staying with parents/relatives. Another 12% reported that they were residing in places deemed as less stable such as homeless shelters, halfway houses and jail or prison. This breakdown is similar to responses from the 2004 Needs Assessment. Places Where Respondents Live Now and 6 Months Ago Housing Current 6 Months Ago Percent N Percent N Owns: apartment/house/trailer 23% % 221 Rents: apartment/house/trailer 42% % 388 Parents/ relatives 15% % 152 Someone else s place 8% 127 9% 88 Rooming/boarding house 2% 25 1% 14 Assisted living 3% 45 3% 32 Half way house 1% 21 1% 11 Nursing home 1% 15 1% 11 Homeless 1% 18 2% 22 Homeless shelter 2% 30 1% 9 Domestic violence shelter <1% 3 <1% 3 Other housing provided by the 1% 19 1% 13 city Hospice <1% 1 <1% 1 Jail or prison <1% 1 2% 17 Page 55 of 133

57 Other 1% 10 1% 8 Total Survey respondents were asked a series of questions about their housing and life circumstances designed to elicit information about their housing stability. Overall, 28% reported that they went at least one night with out a place to sleep, 57% met the definition of being rent-burdened, 33% had unstable housing because of short tenure and 37% would be impacted even by a small rent increase. Prevalence of Housing Instability Indicators Indicator Percent At least one night without a place to sleep 28% Rent burdened 57% Short tenure 33% Small rent increase would cause respondent to move 37% Housing Burden A rent-burdened individual is any respondent who reports that more than 30%, but less than 51%, of their monthly income goes to pay the rent or mortgage. In the 2008 Statewide Needs Assessment, 19% of respondents were determined to be rent-burdened. A severely rent-burdened individual is anyone who reports that they pay more than 50% of their monthly income in rent or mortgage payments. These included 38% of respondents to the 2008 Statewide Needs Assessment. It is important to note that 39% of African Americans and 56% of Latinos were severely rent burdened. Rent Burden by Select Demographic Characteristics No rent burden Rent burden Severe rent burden N All 43% 19% 38% 1406 Receiving Housing Subsidy 20% 10% 11% 1413 Race African American 43% 18% 39% 949 Caucasian 45% 20% 35% 379 Asian/Pacific Islander 60% 40% 0% 5 Native American 50% 8% 42% 12 Multi racial 41% 27% 32% 37 Other 21% 13% 67% 24 Hispanic or Latino origin Latino 31% 13% 56% 71 Gender Male 44% 20% 36% 831 Female 42% 17% 41% 563 Transgender 35% 18% 47% 17 Region 1 44% 12% 44% 454 Page 56 of 133

58 2 41% 18% 41% % 33% 38% % 21% 29% % 22% 36% % 33% 23% % 23% 40% % 22% 20% % 21% 39% 56 Age groups % 0% 67% % 24% 41% % 17% 34% % 16% 40% % 16% 44% % 19% 41% % 19% 36% % 25% 30% % 18% 40% % 24% 22% 41 Tenure in Current Housing People who have been in their current housing for a very short time, defined here as six months or less, are assumed to be at a higher risk of housing instability. The initial months in a new housing situation tend to be tenuous in terms of ability to pay the appropriate deposits as well as the monthly rent, adjustment to the stress of moving and settling in, the ability to acquire furnishings, and other similar factors. Of the 1,743 respondents, fully one-third (33%) had been in their current housing for six months or less. Eighteen percent (18%) had been in current housing for two months or less. Length of Time at Current Residence (N=1753) Page 57 of 133

59 Perceived Impact of Rent Increases Client responses about the perceived impact of a range of small monthly increases in rent or mortgage payments can provide information about the relative stability of their current housing situation. If respondents report that they would likely have to move if their rent/mortgage increased only marginally, that is an indication of how tenuous their housing situation is. Responses on the needs assessment survey showed that 64% of respondents felt that an increase of up to $100 per month would necessitate a move. Nearly half (49%) would be similarly affected by an increase of up to $75 per month and one quarter (25%) felt that an increase of only $25 per month would cause them to move. Increase Per Month in Rent/Mortgage That Would Cause Respondents to Move (N=1220) The above information indicates that a large percentage of people with HIV/AIDS in Louisiana are living very close to the edge as it relates to their ability to afford and remain in stable housing. In addition, survey respondents were asked whether they were receiving a monthly housing subsidy, such as a Section 8 vouchers or Shelter Plus Care. The results indicated that only 16% of respondents had access to this type of subsidy which is designed to increase the affordability of housing for persons with very low incomes. Survey respondents were also asked three questions about barriers they have experienced related to HIV/AIDS-related housing services. Responses to these issues are summarized below. The top five barriers that stopped respondents from taking care of their HIV disease were: Don t have money to pay rent (14%) Afraid of others finding out HIV+ status (13%) Don t have enough food to eat (11%) Don t have a safe & private room (9%) Don t have a telephone (8%) The top five barriers to accessing HIV/AIDS-Related Housing Services were: Didn t know where to get service (30%) Didn t qualify for housing services (12%) Page 58 of 133

60 Was put on a waiting list (10%) Other (8%) Didn t want anyone to know I am HIV+ (7%) The top five barriers to Obtaining Housing were: Didn t have money for deposit (55%) Couldn t find affordable housing (35%) Had no transportation to search for housing (28%) Had bad credit (26%) Was put on a waiting list (25%) Barriers: Availability of, access to and knowledge about affordable housing and housing supports are major deterrents to housing stability for low-income people with HIV/AIDS. The following are the primary housing barriers identified: Affordable and safe housing options are extremely limited, especially in the areas hardest hit by the hurricanes, including the extended New Orleans metropolitan area, the Baton Rouge area, Lafayette, Lake Charles and Shreveport (66). The slow pace in restoration of public, subsidized housing limits further the affordable supported housing available for PLWH/A. The current availability of rental vouchers designed to help with affordability is extremely limited and does not match the need. The limited availability of move in assistance, including rent deposits, further limits consumer access to housing that is available. There are also some social issues that impact housing options dramatically. For example, low high school graduation rate that does not support employment for Louisiana residents that would allow a range of housing options, less dependence on public housing and housing assistance. Recommendations: Augment affordable housing programs for PLWH/A, as well as establish linkages with other private, state and federal housing programs. Leveraging use of other federal dollars, such as HOPWA or HOME Investment Partnerships Program (HOME), for rental subsidies and/or move in expenses. Enhancing the ability to secure permanent supportive housing (PSH) units for PLWH/A Improving dissemination of information about housing options and supports to PLWH/A Increase coordination with programs and planning efforts designed to increase affordable housing options for PLWH/A. Development a cabinet level Office of Housing with sufficient staffing to coordinate the State s response to shortages of affordable housing, the administration of federal and State housing resources, the reduction of blighted and/or abandoned housing, and linkage with supportive services that assist clients in maintaining their current housing options. Medical Transportation Need: Page 59 of 133

61 Consumers who utilize HIV services in Louisiana consistently report that they are unable to obtain the services they need due to an inability to access affordable, reliable methods of transportation. Only thirtynine percent (39%) of respondents in the 2008 Statewide Needs Assessment reported owning their own car. Seventy-one percent (71%) of consumers must get a ride from family or friends, or take a bus, taxi or van in order to access their primary medical care or social service appointments. Various forms of transportation assistance are provided by Louisiana Medicaid, medical facilities and many Ryan White service providers; however, the unmet need for this service remains high due to a number of factors. Some agencies funded for transportation are only able to provide services within their catchment areas and have stipulations regarding how far they can travel or if they are able to cross parish lines. Persons living in rural areas and the unemployed face the greatest challenges, as affordable public transportation can be non-existent or extremely limited. Twelve percent of HIV-infected individuals live in rural parishes which are often lacking an availability of HIV-specific medical care. In addition, traveling long distances to access services can deplete both client and agency transportation funds more quickly in rural settings. PLWH/A living in urban regions within the State depend on bus cards, taxi services, gas cards, and street car tokens. Many individuals have reported to case management services and medical providers that these services can be extremely limited in their travel routes, schedule timetables, set stops and even in the number of buses/street cars that are used for certain routes. The Greater New Orleans Community Data Center and the Brooking institute report that between June 2007 and July 2008, the city of New Orleans added no new public transportation routes or buses, even as transit ridership grew by 45 percent during that time period (68). In addition, there is not enough money to accommodate the needs of all consumers who access transportation through the Ryan White programs. With limited bus routes, many providers have to rely heavily on taxi services to provide transportation to their consumers. This can be a very expensive option depending on traffic, the length of the trip and if wait times are charged in addition to the taxi fare. Regardless of urban or rural residence, every region of the state reported transportation services as one of the top-five needs of PLWH/A. Consumers who participated in the 2008 Statewide Needs Assessment reported a lack of transportation services as a barrier to receiving HIV-related care and to being compliant with medical care appointments, getting to the pharmacy, work and appointments at other socials service organizations (i.e. Social Security Administration, Food Stamp Office, Women, Infants and Children (WIC)). A missed bus or late van could cause a client to be late for a doctor s appointment, resulting in the need to reschedule an appointment. The resulting wait time for a new appointment may be significant (upwards of several months). Additionally, not all rural public hospitals provide all the specialty doctors and services. With a referral comes the need for additional transportation resources, which in some instances can add up to an additional hour of travel time. These necessary medical trips not only lead to high travel expenses for the service provider, but long wait times for the consumer. Both instances can present a barrier for individuals to attend medical appointments. Barriers: Necessary services are not always located in the immediate town of residence, thereby increasing the cost and distance of travel to access medical and social services. Transportation options and services are still somewhat limited in both urban and rural areas, inclusive of bus service, taxis and third party transportation providers. Some transportation providers (i.e., Medicaid, Council on Aging, etc.) do not cross parish lines when providing this service. Transportation for after hours care and in case of emergency is especially limited. In some of the rural areas, this service is almost non-existent. Page 60 of 133

62 Personal transportation is often unaffordable for PLWH/A who are unemployed or living on limited incomes. Medical Transportation is not noted by the Ryan White legislation as a core service. Recommendations: Explore innovative and alternative solutions to transportation difficulties. Contracting with a transportation provider could increase the availability of transportation for PLWH/A outside of public transportation limits, as well as for those totally devoid of any transportation resources. Maintain gas vouchers or mileage reimbursement programs and increase utilization to those who have access to a car. Increase awareness of assistance for public transportation options or of services located close to the client s residence. Consider transportation needs and limitations when developing a client s Plan of Care to ensure access to care is met and able to be maintained. This will ensure that compliance in medical care and medications are more attainable to consumers who are provided resources. Collaborate across Ryan White funding streams to advocate for improved transportation services through Louisiana Medicaid and other transportation providers. Medications Need: The development and utilization of new antiretroviral agents continues to be the foundation for treatment of HIV disease and have significantly increased the average life expectancy of PLWH/A. Likewise, medications to prevent and treat HIV-related opportunistic infections (OI) are also critical to the management of HIV. Access to and usage of these innovative medications has confirmed a continued and an indisputable need for medication assistance. The Louisiana ADAP, a statewide program implemented in 1996, provides access to approved antiretroviral therapy and OI medications at no cost to eligible consumers who have a household income at or below 200% of the FPL. The Louisiana ADAP Formulary includes all Food and Drug Administration (FDA) approved antiretroviral medications used to treat HIV/AIDS. In addition, on February 1, 2008, in order to come into compliance with the USPHS Guidelines for the Treatment of Opportunistic Infections among HIV-Infected Adults and Adolescents, Louisiana ADAP was able to expand its formulary to include 31 medications recommended for the prevention and treatment of OIs. Additionally, effective January 1, 2007, ADAP has coordinated with Ryan White Part A and TGA programs to provide assistance with premiums, deductibles and co-payments related to the Medicare Part D Prescription Drug Program (PDP). Eligible individuals are required to select a Medicare Part D PDP and apply for the Low Income Subsidy (LIS) in order to access medication assistance paid for by any of the Ryan White Part B programs. The average amount of Part B resources utilized per person for HIV-related medications not covered by the Louisiana ADAP formulary between July 2007 and June 2008 was $411 (1184 clients, total of $486,456 spent). These expenditures indicate the continued consumer need for medication services. In the 2008 Statewide Needs Assessment, 73% of the respondents (N=1360) reported that they needed and used medications in the last six months. Five percent of the respondents indicated that while they needed medications, they couldn t get the service and 4% indicated that they didn t know about the service. Eighteen percent reported that they did not need the service. Page 61 of 133

63 The 2008 Statewide Needs Assessment further indicates that in the last 6 months, 21% of the respondents (N=1177) needed help taking medications and they received those services. Four percent needed help taking medications and couldn t get this service, while 5% didn t know about the services. Seventy-one percent indicated that they didn t need this service. In relation to adherence to medications prescribed by their doctor, only 66% of the respondents (N=1532) reported that they were always adherent, demonstrating a need for interventions to increase education and provide the appropriate tools to help clients take their medication as prescribed. Twenty-five percent of the respondents self reported that they were adherent most of the time, 6% reported that they were adherent some of the time, 2% indicated that they were rarely adherent, and 1% indicated that they didn t know what the directions were. Adherence to Medications Prescribed by Doctor (N=1532) When asked why they did not take HIV/AIDS medications, 47% of all respondents indicated that they have not been prescribed HIV medications or that more specifically their doctor did not prescribe them (16% of 371 respondents). Page 62 of 133

64 Reasons for Not Taking HIV/AIDS Medications (N=371) I have not been prescribed HIV meds 47% My doctor did not prescribe them 16% I feel healthy 11% They made me feel really bad 9% I don t like taking them 8% Other 7% I cannot afford the cost 6% On a drug holiday decided by myself 5% Trouble remembering to take them 4% I don t know where to get them 4% Medications are not a priority for me 4% On a drug holiday directed by my doctor 3% Doctor wanted to treat other medical problem 2% My doctor said they didn t work for me 2% Note: Respondents were permitted to select more than one category, therefore the sum of all categories may exceed 100% When respondents were questioned about barriers to receiving HIV-related medical care when they were out of care (N=425), 13% of the respondents indicated that they were either afraid of medications or the side effects from the medications. Four percent reported a bad experience with medications. In a question related to housing-related barriers that prevented respondents from taking care of their HIV disease (n=1830), 5% of respondents noted that they don t have a place to store medications. Louisiana has two metropolitan areas that qualify for Ryan White funding: the New Orleans EMA and the Baton Rouge TGA. Both areas have access to Ryan White funding, which enables those communities to expand access to medications beyond the State-operated ADAP formulary. Although the ADAP formulary is uniform throughout the state, the formularies of other no or low cost medication access programs supported by Ryan White grantees or offered through the regional LSU medical centers vary significantly. As a result, inequity in access to non-adap medications exists from region to region. Even though Part B-funded Local AIDS Pharmaceutical Assistance programs are available in Regions III through IX, disparity in medications funding between Part A and B areas is notable. This disparity became even more evident after Hurricane Katrina as thousands of PLWH/A from the New Orleans EMA were displaced around Louisiana and throughout the South and did not have access to the broad New Orleans Part A-supported formulary. OPH-HAP prioritized access to medications as one of the targeted CQI projects for FY As part of a project, the program collected 202 surveys from clients at direct service providers of all AIDS Service Organizations funded through Parts A or B, as well as the LSU HCSD outpatient clinics and pharmacies across the state. Thirty-one percent of client respondents indicated that they had experienced challenges in accessing HAART medications and 75% indicated that they also had difficulty accessing non-haart medications. The higher unmet need for non-haart medications was due to the fact that there are fewer options for assistance for those medications. Twenty-two percent of respondents also indicated that they were challenged by not having health insurance. Nineteen percent indicated that they had experienced medication interruption, with approximately 50% of those interruptions related to HAART medications and 50% related to non- HAART medications. Thirty percent of clients indicated that they had experienced formulary restrictions related to Medicare or Medicaid insurance. As a result of these findings, the program identified the need to train practitioners on how to access drugs covered by Medicaid, as well as the need to identify specific drugs that are not readily available and resources (69). Page 63 of 133

65 Barriers: Access to, availability of and adherence to medications remain a major determinant in decreasing morbidity and mortality among the HIV/AIDS population. Access to medication is contingent upon access to primary care. The following barriers to obtaining medication assistance have been identified: Medicare Part D is confusing and expensive. The donut hole is reached for many people almost immediately due to the high costs of medications (usually by February or March of each year). Lack of consistent and cost-effective transportation to medical appointments and pharmacies, which can lead to inaccessibility to HIV related medications. Treatment practices of low-volume practitioners in rural or underserved areas may limit the knowledge of and access to medications for PLWH/A. The cost of many of the medications is prohibitive for patients who do not qualify for public assistance programs. Lack of knowledge of Medication Assistance Programs if not referred to a local agency operated medication program. Lack of knowledge about other public access Medication Assistance Programs Louisiana Medicaid coverage is limited to low income individuals with an AIDS diagnosis. Operating hours for many clinics are limited and waiting times for a medication appointment can be in excess of 2-4 hours. There are tremendous barriers for individuals who are not Ryan White Part A clients to access a wide variety of treatment medications. Existing inequities among Part A and Part B formularies and reimbursement methods. Recommendations: Evaluate the possibility of expanding Ryan White financial eligibility criteria beyond 200% FPL, possibly up to 400% FPL. Update and expand statewide formularies to include new medications and alternative treatments for HIV/AIDS-related illnesses and co-infections (HCV, blood pressure medications, antibiotics, and other commonly prescribed medications). Explore mechanisms to expand the ADAP program to provide access to ADAP medications through pharmacy distribution points outside of the State public health system. Work toward expanding Louisiana Medicaid eligibility to those who are HIV-infected in order to increase funding sources for medications. Complications from HIV infection can occur even if a client is not diagnosed with AIDS and it is more cost effective to prevent these complications rather than treat them. Train case managers and Medication Assistance Program personnel in the nuances of Medicare Part D, initially and then on a continual basis as changes develop. As much as possible, utilize the services of mail order pharmacies in order to cut down on costs of transportation to receive medications. Re-educate clients about how medication re-fill processes work and the time factors involved to procure a re-fill. Support administrative changes that would allow for Ryan White dollars to be used toward True Outof-Pocket (TrOoP) costs for Medicare Part D medication coverage. Page 64 of 133

66 Train Case Managers, client advocates and clients that different programs have different eligibilities, so a denial for one does not automatically mean a denial from another. Mental Health Treatment Services Needs: The results of the 2008 Statewide Needs Assessment indicates that 32% of respondents (N=1675) received mental health services in the last 6 months. Forty-seven percent of respondents (1569) indicated that in the last 2 weeks they had little interest or pleasure in doing things, and 54% (N=1507) indicated that they felt down, depressed or hopeless. Report Feeling These Emotions Over the Last Two Weeks Thirty-three percent of respondents (N=1603) indicated that they received prescriptions for mental health reasons and 93% of individuals needing medications (N=519) reported receiving the medication they needed. Eight percent of the respondents indicated that they were hospitalized for mental health reasons in the last six months (N=1696). Furthermore, 30% of the respondents (N=1177) reported that they needed and used HIV-related mental health individual counseling in the last six months. Six percent of the respondents indicated that while they needed individual mental health counseling they couldn t get the service, and 7% indicated that they didn t know about the service. Fifty-eight percent reported that they didn t need the service. Need and Use of HIV/AIDS-Related Mental Health/Substance Use Services in the Last Six Months Page 65 of 133

67 Eighteen percent of the respondents (N=1187) reported that they needed and used HIV-related mental health group counseling in the last six months. Four percent of the respondents indicated that while they needed group mental health counseling they couldn t get the service, and 7% indicated that they didn t know about the service. Seventy-one percent reported that they didn t need the service. Of the types of counseling received, 88% reported receiving individual counseling, and 33% reported receiving group counseling (21% received both individual and group counseling; N=513). When asked about the barriers to accessing HIV-related mental health services in the last 6 months, respondents indicated that the most common reason was that they were not aware of the service option (12%) or that services were not available in their area (7% of 1249 respondents). Below is a chart of responses from respondents: Barriers to HIV/AIDS-Related Mental Health Services in the Last Six Months (N=1249) I was not aware of service options 12% Services were not available in my area 7% I didn t want anyone to know I am HIV+ 5% I couldn t afford to pay for services 5% I had to work 4% It was too long until the first available appointment 4% Didn t want others to know 4% I had to care for my child(ren) 2% No proper U.S. residency documents 1% Note: Respondents were permitted to select more than one category, therefore the sum of all categories may exceed 100% When respondents were asked about other medical conditions (other than HIV/AIDS), 9% reported having a diagnosed mental health disorder (N=1829), though 93% (N=137) reported being treated for the diagnosis. In relation to re-engaging in HIV-related medical after a client had been out of care, the 2008 Statewide Needs Assessment also showed that 15% of respondents (N= 425) reported mental health issues as a barrier to receiving care. Page 66 of 133

68 Data from the seven LSU HCSD public hospitals shows that there is a high occurrence of mental health and HIV co-morbidity. Thirty percent of HIV-infected individuals in the public hospital system were also diagnosed with a mental health diagnosis. Of these, 9% have both a mental health and substance use diagnosis. Mental Health and Substance Abuse Diagnoses at 8 Louisiana Public Hospitals 35% 30% 25% 20% 15% 10% 5% 0% Mental health Mental health and substance abuse diagnosis Combined LSU-Health Care Services Division Respondents who had been out of care were queried about assistance that they felt would have helped them to get back into care (N=1129). Twenty-three percent of the respondents indicated that someone to help me cope with stress would have helped. Other responses indicated that programs that incorporated peers may be beneficial to assisting individuals re-engage in their care. Respondent answers follow: Assistance That Would Have Helped Respondent Get Back Into Care (N=1129) Connection to case manager to link me to services 38% Someone to help me cope with stress 23% Appointment reminders 15% Connection to HIV+ peer to link me to services 14% Nothing would have helped 13% Someone to go with me to appointments 10% Someone to help me address competing needs 9% Someone to help me disclose to family and partners 8% Someone to help me manage stigma 7% Other 4% Note: Respondents were permitted to select more than one category, therefore the sum of all categories may exceed 100% Because HIV disease can impact the central nervous system and result in decreased cognitive, behavioral and/or motor functioning, mental health services have an added importance for PLWH/A. On-going mental health assessments and professional services are often necessary as HIV disease progresses. In general, mental health services are available on a limited basis for insured PLWH/A (depending on individual policy limits), but can be difficult to access for those insured by payors such as Medicaid and Medicare and those who do not have any insurance coverage at all. Page 67 of 133

69 Barriers: Lack of integration of mental health services into other primary care venues. Mental health services are lacking for uninsured PLWH/A due to overall shortage of these services for the general population. In addition, these services can be limited for those with private insurance and Medicaid/Medicare. Lack of peer support to seek mental health treatment services. HIV-specific mental health counseling is often lacking. Client hesitancy to report mental illness. Concern that the need for mental health and substance use assistance may not be appropriately expressed through surveys, interviews and/or needs assessment data (i.e., individuals may not feel comfortable disclosing this information). Prevalence of undiagnosed mental health issues (i.e, depression). Recommendations: Provide a comprehensive and culturally appropriate intake assessment for all clients through case management services. This assessment should be designed to detect any mental health needs. Continue to augment the provision of mental health services that address the complex needs of PLWH/A, including adherence and transmission issues. Increase the availability of comprehensive mental health services to address the needs of PLWH/A, ensure quality care, and assist with the reduction of HIV transmission. Continue to identify mental health resources available in the community. All providers should routinely inform and encourage PLWH/A to utilize all available psychosocial services to meet consumers current and future needs. Encourage the utilization of peer support services (under psychosocial support services). This helps increase the overall support services available. Substance Use Treatment Services Need: Documentation of the need for substance use treatment services requires special consideration due to considerable underreporting of this service need. The need for substance use treatment services based on client self-report is readily noted as prone to underestimation (70). In addition, any discussion of substance use treatment tends to be linked with the overall provision of mental health services. Utilizing data from the New Orleans metropolitan area as an example, 20% of respondents reported the need for substance use treatment services. However, a survey of PLWH/A treatment service needs from the providers perspective conducted in March 2007 showed high client need for these services (71). Additionally, a survey of case managers in 2007 found that 48% were in agreement about high need for substance use treatment services among clients (72). The underestimation of substance use treatment needs is also supported by a recent investigation by the Service Delivery Committee of the New Orleans Regional AIDS Planning Council (NORAPC). A review of FY 2008 client data from Part A-funded providers indicated that close to 70% of all clients seeking mental health services also had a concurrent substance use issue; one agency observed a post-katrina increase, during which time 49% of mental health service consumers also had a substance use problem (34). Page 68 of 133

70 In the overall sample of the 2008 Statewide Needs Assessment, less than 20% of PLWH/A respondents reported the need for substance use treatment/counseling; 19% indicated the need for outpatient substance use treatment and 17% for inpatient substance use treatment. African-American males reported slightly higher need compared to the overall sample, with 23% needing outpatient services and 21% seeking inpatient services. This was much higher than the self-reported substance use treatment need among White males (12% outpatient and 11% inpatient). Among females, 18% of African-American females reported need for outpatient services and 15% for inpatient services, compared to White females who had slightly higher need for outpatient services (21%) and an equal level of need for inpatient (15%). Of course, as in the case with the New Orleans EMA, actual need is likely to be much higher than observed through self-report (1). The 2008 Statewide Needs Assessment also documented that 8% of the respondents indicated that substance use prevented them from obtaining housing. Ten percent of respondents who reported substance use problems indicated that they were able to access outpatient substance use treatment, 8% utilized inpatient treatment, 3% could not access inpatient substance use treatment at all, and 11% did not know about inpatient or outpatient substance use treatment services. In addition, 18% of the respondents self identified as having substance use concerns in the last six months, and 9% of the respondents indicated that they were not aware of the available treatment options. Barriers to HIV/AIDS-Related Substance Use Services in the Last Six Months (N=1311) The types of substance use reported by the respondents were: 33% alcohol, 9% crack, 5% prescription drugs, 5% non-prescription drugs, 2% injection drug use and 5% other substances. Of the 55 respondents who disclosed injecting drugs, over half (56%) reported sharing needles in the last three months. Type of Substances Used in the Past Six Months (N=1830) Page 69 of 133

71 Sixty-two percent of the individuals who stated that they had a substance use problem also reported they would most likely use, participate, or seek help with self-help groups, individual counseling, and group counseling to help with substance use problems. In addition, 54% of those individuals who reported using substances in the last six months indicated a desire to stop. Findings above indicate that PLWH/A often go without needed services due to lack of awareness about their availability. This finding is supported by data on barriers collected through the 2008 Statewide Needs Assessment. As illustrated below, lack of awareness of service options was the most common barrier to utilization of substance use treatment services. The top three barriers are presented below. Barriers: 1. I was not aware of service options 2. Services were not available in my area 3. (tie) I didn t want anyone to know I am HIV+ 3. (tie) I had to work Service Preference Data collected in the 2008 Statewide Needs Assessment also provided insight into the best methods to deliver substance use treatment services. Respondents were asked to indicate what services they would most likely use to help address their substance use. Of those who responded, the following findings indicated that the most preferred services were self-help services (i.e., 12-step Narcotics Anonymous, Alcoholics Anonymous, etc.) and individual substance use counseling. The following table provides more detail on individuals service preference, listing the top five services preferred. Type of Substance Use Treatment Service % of those with the Desire to Quit Self-help (12-step NA, AA, etc.) 29 Individual counseling 20 Group counseling (with HIV+ individuals only) 13 A program for substance use problems and HIV 8 Peer support group for HIV+ individuals 8 Page 70 of 133

72 While it is difficult to accurately assess substance use through a consumer survey, the data collected provides some guidance on the best methods for providing substance use services to PLWH/A, as well as areas for improvement. Recommendations are provided below. Recommendations: Provide a comprehensive and culturally appropriate intake assessment for all clients accessing case management services. This assessment should be designed to detect any substance use treatment needs. It should be followed by provision of information and education about the variety of service options available to PLWH/A. All providers should routinely inform and encourage PLWH/A to utilize all available psychosocial services to meet consumers current and future needs. Augment the provision of substance use treatment services that address the complex needs of PLWH/A, including adherence and transmission issues. Increase the availability of comprehensive substance use treatment services to address the needs of PLWH/A, ensure quality care and assist with the reduction of HIV transmission. This should include working to introduce needle exchange programs through community collaborations. Continue to identify substance use resources available in the community. Medical Case Management Need: Although some PLWH/A may not indicate a need for medical case management, for many people the complex medical and financial needs associated with HIV/AIDS require a comprehensive and coordinated approach to care. Medical case management funded by Ryan White Parts A, B and D plays a central role in increasing access to medical and social supportive services, and decreasing the fragmentation of care. In the 2008 Statewide Needs Assessment, approximately 59% PLWH/A received medical case management services. Medical case managers can play a vital role in helping clients navigate complicated service delivery systems and treatment issues such as adherence to antiretroviral medications. This is especially true for HIV-infected pregnant women. In addition to facilitating access to a complicated service delivery system and linking clients to medical care resources, coordinated care and discharge planning for recently released HIV-infected inmates living with HIV/AIDS are important services to re-integrate those individuals back into their communities. Access to Medical Case Management While a low percentage (6%) of the 2008 Statewide Needs Assessment respondents reported that they were not able to access case manager services- a reduction from the 2004 Needs Assessment, the following barriers were listed in accessing medical services in general--including case management services Barriers to HIV/AIDS-Related Medical Services in the Last Six Months (N=907) Page 71 of 133

73 Interestingly, referrals to medical case management for specific sub-groups may be problematic, especially in the case of recently incarcerated individuals. Eleven percent of respondents to the 2008 Statewide Needs Assessment survey had been incarcerated in the past 12 months. Of these respondents, 82% said they received HIV-related medical care while in prison or jail. However, 40% said they received no referrals to medical care or case management, HIV medications or information about finding housing upon being released. Barriers: Some clients do not know that they could benefit from accessing Medical Case Management services. Other clients are too nervous to be seen at an AIDS agency. Transportation to medical case management services is sometimes difficult to obtain. The number of eligible and needy clients often exceeds the recommended case load guidelines for Medical Case Managers. Staff turnover and burn out can be high. Medicaid case management restrictions can be very challenging for agencies. Recommendations: Increase the availability of medical case managers to meet their clients in the community (if requested) in an effort to increase accessibility to medical case management services and overcome transportation barriers. Have all medical case management agencies utilize an acuity scale in order to distribute case loads equitably in regard to client needs. Utilize non-medical case management to address needs of low level need clients. Encourage agencies to seek other sources of funding to provide medical case management services to clients. Refer clients immediately to other community resources if clients are not eligible for Ryan White services. Encourage agencies to work in the community to make knowledge of HIV resources readily known. Discuss burn out at case management trainings and address this issue. Train clinical service providers on issues relevant to HIV-related medical case management that will allow them to better serve clients. Page 72 of 133

74 Work with Medicaid to establish understanding about the complexity of the Ryan White case management system and how it differs from the Medicaid case management system and create a more fluid caseload process. Nutritional Assistance Need: Achieving food security 5, good nutrition and managing nutrition-related complications of HIV infection remain major challenges for PLWH/A. All dimensions of food security--availability, stability, access and use of food are affected where the prevalence of HIV disease is high (73). The effect of nutritional status on HIV disease has been well established. Adequate calorie, protein and micronutrient intake is essential to the maintenance of healthy immune function. Food insecurity and poor nutritional status may hasten progression to AIDS-related illnesses (73). Malnutrition in HIV infection can increase susceptibility to coinfections and accelerate progression of HIV-related diseases. Adequate food and good nutrition are essential in order for HIV-infected individuals to fully benefit from antiretroviral therapy. Antiretroviral therapy may help improve appetite, and it is possible to promote adherence to the therapy if some of the medicines are taken with food. Researchers found that food insecure HIV-infected individuals are less likely to be adherent to antiretroviral therapy, and food insecurity has been associated with incomplete HIV viral load suppression (74); therefore, food insecurity may actually undermine HIV treatment. Food insecurity 5 is positively correlated with poverty. With a poverty rate of 23%, Louisiana has the second highest poverty rate in the United States. The number of households in Louisiana with food insecurity is 183,000 or 11.7% of all households (75). In the current economic climate, the higher cost of food is greatly impacting lower income Americans. The increase in food costs are dramatic in some basic food items, such as milk, cheese, eggs and bread, which have risen between 12% and 30.5% from May 2007 to May 2008 (76). The Food Research and Action Center recommends that nutrition support programs be strengthened in order to help families stretch their limited funds and access healthy food choices (77). Respondents to the 2008 Statewide Needs Assessment survey were asked about their need and use of HIV-related social support services in the last six months. While 42% of the respondents used food bank or food vouchers, 12% reported that they couldn t get the service, and 13% reported that they didn t know about the services (N=1408). Need and Use of HIV/AIDS-Related Support Services in the Last Six Months 5 Food security is defined as the ready availability of nutritionally adequate and safe foods, and the assured ability to acquire acceptable foods in socially acceptable ways. Food insecurity is defined as limited or uncertain availability of nutritionally adequate and safe foods or limited or uncertain availability to acquire acceptable foods in socially acceptable ways. Economic Research Service. Food and Nutrition Assistance Programs. Page 73 of 133

75 In response to the same question asked about home delivered meals, 9% of the respondents reported using the service, 7% reported that they couldn t get the service and 9% reported that they didn t know about the services (N=1236). It is worth noting that (HIV-specific) home delivered meals are currently only available in the New Orleans EMA. The Needs Assessment survey further queried respondents about other HIV-related services that were needed or used in the last six months. While 28% of the respondents used nutritional counseling, 5% reported that they couldn t get the service, and 10% reported that they didn t know about this service (N=1366). In response to the same question being asked about nutritional supplements, 26% of the respondents reported using the service, 7% reported that they couldn t get the service, and 11% reported that they didn t know about the services (N=1321). Need and Use of Other HIV/AIDS-Related Services in the Last Six Months Page 74 of 133

76 Finally, in a question related to housing-related barriers that stopped respondents from taking care of their HIV/AIDS (n=1830), 11% of respondents noted that they don t have enough food to eat. The number of food recipients more than tripled as a result of the Hurricane damage and displacement throughout affected areas in Louisiana. After Hurricanes Katrina and Rita, one of every nine households received food assistance following either Hurricane Katrina or Rita. After Hurricanes Gustav and Ike, the Supplemental Nutrition Assistance Program again provided integral support to individuals and families that were affected. The economic down-turn has impacted many individuals and families in communities across the state, bringing into focus an increased need for assistance to accessing sufficient food and nutritional resources. Barriers: Limited funding for this service category. Educating providers regarding improved nutrition for PWLWH/A. Not regarded by HRSA as a core service. Recommendations: View nutrition assistance as an on-going long term need requiring extended resource identification efforts on the part of the case manager. Develop relationships with local health centers and hospitals in an effort to gain assistance from dietetic interns who can educate clients about dietary health. Incorporate a transportation system into the food program that allows for food to be delivered to clients if deemed necessary and appropriate. Support efforts to change Ryan White legislation to incorporate food and nutrition as core services that are essential to maximize improved health outcomes in conjunction with appropriate medical care and medications. Investigate feasibility of a mobile pantry and fresh vegetables (pantry on wheels). Oral Health Care Need: Page 75 of 133

77 Clients living with HIV/AIDS ranked oral health care as the fourth highest overall need in the 2008 Statewide Needs Assessment which is higher than its ranking on the 2004 Needs Assessment (5 th ). Results showed that 48% of all clients who were in need of this service have accessed this service in the last six months. Of those that reported a need for this service, 19% reported being unable to receive it as compared to 24% on the 2004 Needs Assessment. Oral health care was the highest ranking unmet need of all the primary medical care-related needs. Twenty-three percent (23%) of respondents (N=1380) reported not needing this service. Ten percent (10%) of respondents reported being unaware that dental services were available to them. Need and Use of HIV/AIDS-Related Medical Services in the Last Six Months In areas with Ryan White Part F-funded dental programs (New Orleans, Alexandria and Baton Rouge), oral health care appointments can be obtained within 1-4 weeks, and walk in or next day appointments can be secured for urgent problems. Improvements in access to oral health care services continue to be made on a region-by-region basis; yet, the availability of high quality, affordable standard oral health care across the state continues to be a pressing need for PLWH/A. Services are primarily delivered by private dentists who have established working agreements with HIV/AIDS service organizations and dental clinics supported by Ryan White funding through Parts A, B, C, and F. However, most private dentists and dental clinics are not specialized in the oral health care needs of PLWH/A. Furthermore, as the majority of oral health care providers who are amenable to serving HIV-infected clients are located in the metropolitan areas, it is challenging for clients living in rural regions to access these services, even when appointments are available. Another area of concern is the fact that Louisiana now has 77 designated dental Health Professional Shortage Areas (HPSAs). These areas have increased from 13 parishes in 2005 to 44 parishes today. Delivering sufficient oral health care services for all HIV-positive clients will continue to be extremely challenging with such a drastic work-force shortage. Nonetheless, in order to increase the available pool of dentists, the State continues to work with the Delta Region AIDS Education and Training Center (AECT) and the LSU Dental School to recruit dentists, offer educational opportunities for those dentists willing to work with PLWH/A and train medical providers on the standard procedure for evaluating oral health in a medical setting. Over the years, respondents to 2008 Statewide Needs Assessment surveys have repeatedly indicated that Page 76 of 133

78 there is a level of unmet need for this service. In 2007, the OPH-HAP s CQI program prioritized oral health care and collected data regarding the needs of PLWH/A for oral health care services, documentation of barriers encountered and satisfaction with accessed services. OPH-HAP and participating Ryan White-funded agencies collected surveys from 701 HIV-infected persons in Based on these findings, utilization of oral health care services among the PLWH/A population was higher than expected. Forty-eight percent of respondents indicated that they have been to the dentist in the last year, which is higher than the national average (43.6% of the general population) (78). With respect to the value that clients place on oral health care, 83% of respondents ranked oral health care as very important to them. Despite this utilization and the importance that clients place on oral health care, providers report that there is a high rate of no shows to appointments. One of the driving forces for the CQI project was to understand what factors contribute to these no shows. There is evidence of both client need and a request for a dental appointment. However, when an appointment is scheduled, clients frequently miss these highly sought after and scarce slots--and staff is often frustrated by this reality. The oral health survey results provide clarity on client reported experiences and barriers related to the acquisition of oral health care. Of the 272 persons who reported the need for oral health care, but who were unable to receive it: 86% reported being unable to afford it, 35% reported not knowing where to find it at all, 31% reported being unable to find an HIV-friendly dentist, 27% did not have transportation, 23% could not obtain an appointment 19% worried about privacy/discrimination 19% could not get an appointment at a convenient time 18% worried it would hurt. Surprisingly, even in the two areas of the state with well developed dental programs funded through Ryan White, clients still report the barrier of unavailability. While the percentage is lower than in regions without these programs, it still speaks to the overwhelming demand for these services (78). Barriers: Although Louisiana has realized an increase in Part C- and Part F-funded dental services, publicly funded HIV-specific dental services, providers and appointments are limited in rural areas. This is also true in urban areas, where demand exceeds availability. The cost of accessing private dental services is usually higher than public care and there are many private dentists who do not accept Louisiana Medicaid. There continues to be insufficient funding for costly, but needed services. Given the level of funding to each region, community-based organizations must establish an annual oral health care allowance per client. Some regions only have funds available for emergency oral health care. Awareness of the availability of services continues to be lacking among PLWH/A. A surprising percentage (10%) of clients reported needing service, but they were unaware of what was available. According to client report, only 42% of their medical providers are emphasizing the importance of oral health to their overall health (68). Recommendations: Page 77 of 133

79 Continue to outreach and develop relationships with dentists in each region (Medicaid and private) in order to broaden the provider resources. Verify the best client contact phone numbers and establish a mechanism for phoning to remind clients of their appointments in an effort to reduce no show rates. Conduct phone outreach from the dental clinic to those clients not keeping appointments. Emphasize the need for collaboration between dental clinics and CBOs to increase case management services to assist clients access dental appointments just as they would for priority medical visits. Prioritize clients that are frequent no shows for dental appointments. Work with clients prior to appointments to assure transportation is arranged for the date and time of the dental appointment. Educate clients on the importance of oral health care as it relates to HIV and overall health care, as well as the resources available to assist them with meeting oral health care needs. Educate dental providers regarding the needs and care regimens of PLWH/A and the need for patientcentered, confidential care. Expand the capacity of medical providers to complete an oral exam in a medical setting to improve early identification of problematic conditions before they deteriorate into more serious problems. Explore options of triaging clients with highest needs and developing a treatment plan to follow until work is completed. Assure involvement of case management to assist with appointment attendance. Develop oral health care support groups for clients to provide education and reduce stress and anxiety that can be associated with oral health care. Consider the use of clients as peers (oral health buddies) to meet and accompany clients for visits. Cross check dental appointments to assure there is no conflict with medical appointments when scheduling. If feasible try to schedule on the same day (hours apart) if transportation is an issue for clients residing in rural areas. Continue statewide Oral Health Care CQI program and annually survey clients on oral health care needs and experiences. Encourage agencies to seek other sources of funding for oral health care. Education Need: PLWH/A reside in every parish of Louisiana. Prevention education is the foundation for slowing the HIV epidemic. Three levels of prevention education activities are needed to facilitate this process. The CDC introduced its Advancing HIV Prevention initiative in One of the four main tenets of that initiative is to prevent new infections by working with persons diagnosed with HIV and their partners. With direction from the CDC, in the 2008 Prevention Plan the Louisiana Statewide Community Planning Group has prioritized HIV-infected individuals as the number one priority population for prevention activities. In designing prevention with positives programs in Louisiana, several of the ideas outlined in the National Association of People With AIDS (NAPWA) Principles of HIV Prevention with Positives have been kept in mind. These include the following guidelines: Prevention must be a shared responsibility between both positive and negative individuals; Don t assume serostatus. HIV prevention programs should deliver messages that are inclusive, understanding that HIV-infected people are in the audience for these programs; Effective programs must fully accept the right of PLWH/A to intimacy and sexual health; Page 78 of 133

80 Knowledge of serostatus is important, but it isn t enough; Disclosure isn t always the answer. Disclosure doesn t guarantee safe behavior; Stigma, discrimination, shame and fear drive people underground and make prevention harder for everyone, especially positive people; Coercion/criminalization is not the answer and certainly shouldn t be the first answer; Programs must be anchored in the real needs and concerns of PLWH/A; and PLWH/A need to be involved in the planning, design, delivery and evaluation of these programs. In 2007 the State of Louisiana received approximately $7 million dollars in federal funding from the CDC, and an additional $1.7 million dollars in State general funds, to assist in these endeavors. These resources are used to provide prevention services through 16 community-based organizations and public health units located in all nine public health regions of the State. Activities include outreach, condom distribution, HIV counseling and testing, HIV Partner Services (HPS), a statewide information line and a community planning process. During 2007, OPH funded providers completed over 58,000 encounters through outreach, distributed 12 million free condoms and conducted over 50,000 HIV tests. Prevention with positives programs begin with the HIV testing process. Persons who test positive are informed they will be contacted by a Disease Intervention Specialist (DIS) to offer HPS to assist in notifying their partners of possible exposure to HIV. In addition, referrals are made to medical care and social services and followed-up to assure a connection to those services. Furthermore, four additional programs are part of the prevention portfolio that target HIV positive individuals, including risk management (a one-on-one intervention that assists HIV persons in overcoming barriers to reducing their risk of passing on their infection and helping them deal with their status), Project AYA (a six session small group intervention targeting HIV-infected African American women that deals with such topics as disclosure, relationships, treatment adherence and spirituality), Project Alive (an 8-week small group intervention targeting HIV-infected MSM that deals with the topics covered in Project AYA plus homophobia and heterosexism), Consumer Advisory Councils (groups led by HIV-infected individuals with the purpose of giving a voice to its members and providing education and support to HIV positive persons) and STD screening of HIV-infected individuals Statewide Needs Assessment Results Fifty-nine percent of respondents to the 2008 Statewide Needs Assessment survey reported that their greatest prevention-related need was free condoms (59%), closely followed by information on safer sex (54%). Need and Use of HIV/AIDS-Related Prevention Services in the Last Six Months Page 79 of 133

81 Of those who reported barriers to receiving HIV/AIDS prevention related services (n=821), 20% were not able to access these services because of lack of knowledge about where to get services. Barriers to HIV/AIDS-Related Prevention Services in the Last Six Months (N=821) In addition, 54% of the 2008 Statewide Needs Assessment respondents reported being sexually active in the last three months and 26% of those who are sexually active reported having two or more partners. These data confirm the importance of access to condoms for PLWH/A. A vast majority (77%) of sexually active respondents reported using a condom the last time they had sex; however, 14% of respondents report that they never use a condom with a male partner and 9% never use a condom with a female partner. Barriers: Education materials may not be culturally appropriate (i.e., for HIV positive persons). Lack of awareness of Prevention with Positives programs. Prevention education and support not universally available to all HIV positive persons. Stigma prevents positive persons from seeking care and education. Criminalization of HIV can cause persons not to disclose for fear of reprisal. Lack of follow-up on referrals to medical and social services. Page 80 of 133

82 Stigma attached to HPS services reduce its effectiveness as a Prevention with Positives intervention. Recommendations: Increase linkages of HIV-positive clients into primary medical care through evidence-based education interventions. Increase evidence-based prevention education efforts targeting HIV positive persons. Training in evidence-based Prevention with Positives strategies must be available to health care providers at all levels. Utilize the statewide HIV/STD Infoline and other HIV prevention programs to increase awareness of Prevention with Positives programs and other available services. Develop and implement evidence-based programs to reduce and address HIV/AIDS stigma through case management, social marketing campaigns or other resources. Page 81 of 133

83 Current Continuum of Care Chapter 7: Description of Current Continuum of Care The continuum of care begins with the screening and testing of individuals to help identify persons infected with HIV; the referral of those individuals testing HIV positive to medical and social services; and the provision of assistance to HIV positive persons in notifying their sexual and needle sharing partners of their possible exposure to HIV. OPH-HAP is responsible for providing and coordinating efforts to address the needs of HIV-infected persons. Coordination between Part B and CDC-funded HIV Prevention and HIV Surveillance The structure of the HIV/AIDS Program consists of several programmatic components that include the Ryan White Part B and HOPWA services to eligible low-income individuals living with HIV/AIDS (Services Unit), the HIV CDC and State-funded Prevention activities (Prevention Unit) and the HIV Surveillance CDC program (Surveillance Unit). In addition, OPH-HAP has an Evaluation Unit, Data Management and Analysis Unit and a Finance Unit. All programmatic divisions are physically located in one office and are under the direction of one Administrative Director. Bi-monthly general staff meetings and management meetings every two weeks are held to share programmatic information and encourage cross-program collaboration. At the service delivery level, a majority of the Part B-funded contractors are also funded to provide HIV Prevention activities. This has resulted in the capability of organizations to offer a full continuum of care from HIV Prevention education to HIV Counseling and Testing services to the appropriate social services and referrals to medical care for individuals who are HIV-infected. In many cases, a client can literally be walked from a post-test counseling session to an intake worker who can link them into Medical Case Management services. Based on a protocol that was designed to strengthen the link between HIV Counseling and Testing services and Ambulatory/Outpatient Medical Care, Medical Case Management, and Risk Management (previously named Prevention Case Management), a post-test counselor, with the client s consent, will also schedule the client s first medical appointment as part of the post-test counseling session and follow up on the referral to ensure connection with the services. With the recent expansion of HIV testing through a competitive award from the CDC, it is expected that increased testing and linkage into care will occur in other venues such as STD clinics and emergency rooms. At the planning level, regional HIV coordinators facilitate meetings of local representatives to coordinate outreach and other prevention activities in the region and facilitate the activities of the local care and prevention planning bodies. The expanded role of the coordinators increases communication between the HIV/AIDS Program and these regional planning groups, allowing for greater sharing of information. This role also encourages discussion between Services and Prevention Units regarding the full continuum of HIV interventions and services. Additionally, a Surveillance Liaison staff person is available to manage data requests from both in-house staff and community members to provide up-to-date information regarding target populations, emerging trends and risk groups. Most importantly, this individual is responsible for translating technical information into language that can be understood by all persons involved in local or regional planning activities. In FY 2009, the HIV/AIDS Program is planning to completely integrate these collaborative meetings, utilizing their limited human resources to address both Prevention and Services issues. With transportation being a large issue for consumers, this one-stop meeting/planning body model assists in developing a more cohesive process--integrating Prevention and Services and creating a more efficient way to plan and Page 82 of 133

84 provide information from the local level to the State level. This joint venture will also continue to enhance knowledge of resources, strengthen the relationship with local clinics and HIV care providers, as well as reduce any current duplication of efforts and service gaps in the delivery infrastructure. Ryan White HIV/AIDS Part B-funded Services The Services component currently oversees the administration and monitoring of 14 contracts for the provision of State Direct Services (including ambulatory outpatient medical care), services delivered through the Home- and Community-Based Care Program, the support of private and public insurance policies through the Health Insurance Continuation Program (HICP) and the Co-payment and Deductible Assistance Program (CDAP), and the ten dispensing pharmacies and laboratory services contracted by the Louisiana ADAP. Medical care, including treatment of HIV infection consistent with US Public Health Service (US PHS) guidelines, is primarily provided through the ten regional public Medical Centers. These centers--seven of which are administered by the LSU HCSD, with the other three under the oversight of the LSU Shreveport Medical Center--currently provide care to more than 82% of individuals reported with an HIV diagnosis. This system is the primary source of health care for indigent, minority, uninsured and under-served populations in Louisiana. Each hospital includes outpatient clinics that offer a full range of health services to men, women, pregnant women, infants, children and adolescents. Services include HIV primary care, medications, laboratory services, specialty care and the prophylaxis and treatment of OIs. Each clinic also has an HIV formulary that provides general HIV-related medications not covered by the Louisiana ADAP to patients who do not have insurance to pay for them. Six of the ten medical centers are also recipients of Ryan White Part C Early Intervention Services (EIS) grants. Ryan White Part B funds also support the expansion of this system of care, as five of the ten regional public medical centers also receive resources from the HIV/AIDS Program to support additional or specialized staff to meet the increased demands for high quality services. HAP provides Part B funding to two additional (non-lsu) clinics: the Caring Clinic in Baton Rouge and the clinic housed at the NO/AIDS Task Force in New Orleans. In addition, the HIV/AIDS Program will offer coordination and support to other Community Health Centers and community-based organizations that are attempting to expand primary care to HIV-infected individuals through applications for Part C EIS and planning grants. Each region has allocated anywhere from 34% to 56% of their resources to medical and supportive case management for the FY 2009 grant year. After case management, the service categories of local AIDS pharmaceutical assistance programs, oral health care services and medical transportation are prioritized by all regional planning bodies and receive the next largest allocation of resources. The remaining categories which have been prioritized for the upcoming year include: mental health services, substance use treatment services (outpatient), food bank, direct emergency financial assistance and housing services. Other services supported by Ryan White Part B resources include the statewide HICP and the CDAP. These programs assist eligible PLWH/A in paying their private and public health insurance premiums, copayments and deductibles in order to maintain coverage. Legal services are also provided through a single contract monitored directly by the HIV/AIDS Program. This is more cost efficient than retaining specialized counsel for the provision of intermittent legal services. Home- and Community-Based Care services for PLWH/A are supported by Ryan White Part B funds and are also directly administered by the HIV/AIDS Program. All of the contracted entities are for-profit, as there are currently no not-for-profit providers of home health services in the state. In addition, the OPH-HAP continues to administer and monitor the Louisiana ADAP through contracts with each of the ten LSU regional public medical centers. These medical centers have agreed to distribute Page 83 of 133

85 antiretroviral (ARV) medications and pharmaceuticals for the prevention and treatment of OIs that are covered by the ADAP formulary, as well as perform four diagnostic laboratory services. The ADAP formulary is the only uniform statewide formulary, and continues to focus on medications necessary to support those pharmaceuticals that are recommended by the current US PHS guidelines. Housing Opportunities for Persons With AIDS In addition to Ryan White Part B funding, the HIV/AIDS Program is also the recipient of State Formula HOPWA funding from the Department of Housing and Urban Development (HUD). These funds go to seven of the nine public health regions (the New Orleans and Baton Rouge metropolitan areas are qualifying cities for HOPWA awards directly from HUD due to the number of persons living with HIV in each area). HOPWA assists eligible persons in four key areas: 1) making short-term rent, mortgage and/or utility payments up to five times in a 52-week period; 2) accessing Tenant-Based Rental Assistance payments to supplement a client s monthly contribution to their housing costs; 3) supporting the rehabilitation and renovation of an existing structure for use as a residential facility, and assisting with the operation costs of supporting persons living with HIV/AIDS and 4) assisting local agencies with Resource identification to expand the availability of safe and affordable housing options for HIV-infected persons. Coordination between Part B and other Ryan White Programs Louisiana All-Titles Meetings, created in July 2002, were held on a quarterly basis with representatives from all Ryan White grantees in the state during pre-hurricane grant years. These meetings were reinitiated again in June 2008 with the goal of exchanging information regarding program services and funding, identifying barriers and gaps in client care and defining possible solutions. The leadership of these meetings was shared across all entities pre-katrina, where each meeting was facilitated by a different representative. However, at this time, Part B is taking the lead on the All-Titles Meeting facilitation. It is anticipated that these ongoing meetings will continue to provide a forum for ongoing collaboration and enhancement of HIV-related services in the state. Part B is engaged in multiple coordination activities with other Part A, C and D grantees, and there are several services/programs that are provided jointly. One project that was beneficial to all Ryan White grantees and planning bodies/advisory groups making recommendations regarding the allocation of funding and the selection of service priorities is the 2008 Statewide HIV/AIDS Needs Assessment. This collaborative endeavor was undertaken to reduce duplication of effort and expenditures, to collect comparable information for all service areas, and to maximize response rates from persons living with HIV throughout the State. The purpose of the Statewide Needs Assessment was to gain a greater understanding of the current level of HIV/AIDS service needs and to provide insight into consumers' perceptions of the availability of HIV/AIDS services throughout the State. Other collaborative activities between Parts A and B include continuing contact between the grantees administrators regarding relevant planning and implementation issues and participation on planning bodies. Currently Part B has a seat on the New Orleans Part A Planning Council, filled by the HAP Services Manager, and on the Mayor s HIV Task Force in the Baton Rouge TGA, filled by the Case Management/Housing Coordinator. In addition, representatives from Part A and the TGA routinely attend statewide or regional Part B meetings convened by Part B staff. Coordination among Part B and other Ryan White Programs also happens through the Louisiana Commission on HIV/AIDS and Hepatitis C which is a governor-appointed body, comprised of representatives from state agencies, community-based organizations, the state legislature, and consumers. One of the Commission s charges is to serve as a coordinating forum on HIV-related matters between and among public agencies, local government, and other non-governmental groups. All Ryan White Parts (A, B, C, D and F) in the State of Louisiana have representational seats on the Commission and are able to Page 84 of 133

86 represent the concerns of the grantees, as well as report in a timely and accurate manner on service utilization and progress in achieving established goals." Part B and Part C grantees throughout the state also work closely together in the coordination of primary and specialty medical services to low income persons living with HIV/AIDS. Part B has previously provided financial resources to augment care at several of the Part C-funded clinics (MCLNO, as well as Capitol City Family Health Center and Earl K. Long Medical Center in Baton Rouge) and is currently funding staff and/or services to assist other Part C grantees (University Medical Center in Lafayette, Huey P. Long Medical Center in Alexandria, E.A. Conway Medical Center in Monroe, the LSU Viral Disease Clinic in Shreveport and Bogalusa Medical Center in Bogalusa). There are also several programs funded jointly through Parts B and D. The Family Advocacy, Care, and Education Services (FACES) Program of Children s Hospital in New Orleans funds four communitybased organizations in other areas of the state to replicate the model of family-centered care which exists in New Orleans. Three of these four community-based organizations, Acadiana CARES in Lafayette, GO CARE in Monroe and the Philadelphia Center in Shreveport, are also funded by Part B to provide services to eligible HIV-infected individuals in their regions. In addition, FACES is currently serving as the grantee for Part D services delivered in Region II (Baton Rouge), where they have subcontracted with Family Service of Greater Baton Rouge (FSGBR) and the Baton Rouge Black Alcoholism Council-Metro Health Education Program for the provision of those services. Before Baton Rouge became a TGA in 2007, FSGBR was previously funded to provide Part B services. Metro Health currently has a contract with the HIV/AIDS Program to deliver HIV prevention interventions in Region II. The HIV/AIDS Program has also coordinated closely with the Part D and F grantees in the joint endeavor to eliminate perinatal transmission in Louisiana. Educational and media materials developed by FACES while they were a recipient of a SPNS grant have been modified for continued statewide distribution, and both agencies have staff specifically dedicated to removing barriers to care for pregnant HIV-infected women and facilitating access to HIV testing and care. Prior to Hurricane Katrina, FACES implemented a pilot program targeted to HIV-positive women called AYA. This program is a small group session curriculum-based intervention that enhances the skills of HIV-positive women to assist them in making healthier decisions. The LSU Dental School is the recipient of Ryan White Part F dental reimbursement funding. This clinic, located at the HOP clinic, has supported the development of specific dental services for HIV-infected individuals. Even with a diminished population in New Orleans, the dental clinic is consistently at full capacity and is usually unable to offer services to patients who are not receiving their primary care at HOP. The primary dental provider at the clinic has been active on the Louisiana Commission on HIV/AIDS and HCV, and she has worked closely with the HIV/AIDS Program to pursue additional mechanisms for providing dental care outside of the New Orleans area. In 2002, resources were secured for the Ryan White Community-Based Dental Partnership Program which is based at the Huey P. Long Medical Center in Pineville, LA. These resources were utilized to expand crucial oral health services for HIV-infected individuals in central Louisiana, and Part B funds were utilized to purchase start up equipment for the new dental clinic. As mentioned previously a key joint project between the HIV/AIDS Program and the Delta AETC is one which focuses on the reduction of perinatal transmission. Delta AETC assists in this endeavor by reviewing proposed educational materials for health care providers and providing current mailing lists of licensed and practicing Obstetricians, Gynecologists, Family Practitioners and Pediatricians. In addition, Page 85 of 133

87 AETC staff is offering training regarding the implementation of CDC guidelines for the testing of pregnant women. Furthermore, Delta AETC has been instrumental in coordinating routine telemedicine videoconferences between primary medical care providers in the community and those who are practicing at facilities supported by the DPS&C. This has helped to increase continuity of care as persons living with HIV/AIDS become incarcerated and/or discharged from prison, and assisted in reducing the cost of bringing relatively healthy HIV-infected clients (and the necessary guards and other security personnel) to clinic for routine medical care. The Principal Investigator of the Delta AETC, Ronald Wilcox, MD, serves on the Continuous Quality Management (CQM) Steering Committee and Medication Access subcommittee. Additionally, Dr. Wilcox serves on the panel that reviews private patient requests for ADAP medications. When the Medication Access subcommittee (or any of the CQM subcommittees) identifies a need for training of HIV clinicians on new treatment options, the AETC has coordinated and conducted training opportunities throughout the state. The Delta AETC also conducts an annual one-day update for clinicians that provide an excellent opportunity to educate medical providers on the latest pharmaceutical recommendations and clinical trial study results (79). Coordination between Part B and Substance Use Prevention and Treatment Services The State of Louisiana is a recipient of block grants through the SAMHSA administered through the Department of Hospitals, Office of Addictive Disorders (OAD). Block grant funds are used to support substance use prevention activities and treatment programs statewide and also fund counselors and phlebotomists who provide HIV services. In 2005, HAP entered into a memorandum of agreement with OAD funded clinics to provide training, technical assistance and quality assurance for HIV counseling and testing staff related to the implementation of the oral rapid testing technology. People known to be HIV-infected receive priority admission to substance use treatment facilities and are actively linked to the HIV EIS statewide. Clients are also referred to primary medical care, mental health services and all Ryan White-funded programs for supportive HIV services, including assistance in obtaining medications, transportation, housing, food and securing social service benefits. Collaboration between primary medical providers and substance use services is seamless and continuous. If a medical provider identifies a patient who is coping with a substance issue, s/he is referred to the clinic social worker or to a community-based organization funded through Ryan White for medical case management services. These social service providers then determine the extent of substance use and the client s level of desire to address the issue. Clients who indicate the desire for treatment are informed of available services and referred to the most appropriate in- or out-patient program. Part B Coordination with Other Federal Programs Louisiana Medicaid In the most recent Statewide Needs Assessment, 60% of the respondents with any source of private or public insurance coverage indicated that they had qualified for Medicaid benefits clearly making this program the largest resource for persons living with HIV/AIDS in Louisiana. As such, Part B-funded providers are instructed to screen for third party coverage and fully exhaust any available Medicaid benefits before turning to Ryan White funds to meet the unmet need. Any changes, or proposed changes, to Louisiana Medicaid are closely monitored by the HIV/AIDS Program each year to assess any potential impact on Part B funding and to identify areas for legislative education. The Legislative Session ends four months prior to the Part B Priorities and Allocations processes, so any areas of impact would be available for consideration prior to proposing the next year s Part B budget (79). Page 86 of 133

88 Coordination with Medicaid varies, depending on the service. For example, to facilitate continuity of care, Home- and Community-Based Care providers bill Louisiana Medicaid to capacity for eligible services ordered by a physician, and then charge any additional services to Part B funding. CBOs providing State Direct Services are required to screen for Medicaid eligibility and to assist individuals in applying for services through Louisiana Medicaid and the Louisiana Children s Health Insurance Program (LaCHIP). Clients accessing ADAP and HICP services directly through OPH-HAP are financially screened for Medicaid on a routine basis and, if found to be eligible, are referred to the appropriate providers. Since there are no restrictions on ARV medications through Louisiana Medicaid (i.e., denial of coverage for dual protease inhibitors) and the medications available are not limited to those related to HIV disease, clients are generally eager to qualify for Medicaid. The regional public medical centers have online interface with Medicaid which allows any change in a client s coverage to be identified immediately. This is also true for Home- and Community-Based Care providers (79). Louisiana Children s Health Insurance Program (LaCHIP) Whenever possible, clients are screened for eligibility in one of several programs that offer health insurance coverage. In 1998, due to the fact that 20% of the State s children lacked insurance coverage for basic health care services, the DHH implemented LaCHIP under the authorization of Title XXI of the Social Security Act. This program was developed to extend Medicaid insurance coverage to children living in families whose income levels had previously precluded them from eligibility for Medicaid, and provides for primary care, preventative and emergency care, immunizations, prescription medications, hospitalization, home health care and many other health services. Through LaCHIP, uninsured children up to the age of 19, whose families earn up to 200% of the FPL, can qualify for these services. This is helpful, as 28% of children 18 years or younger lived in poverty in Louisiana in Even if household income is higher than these levels, children may still qualify as eligibility is based upon only the parents and child s income, and is not affected by the income of other adults or care givers in the home. For planning purposes this resource stays fairly constant from year to year. Medicare While Medicare Parts A and B have not changed dramatically in the last few years, the introduction of Part D has been an on-going challenge for program coordination between Medicare Part D and Ryan White Parts A and B, as well as the planning and allocation of Part B funds. Prior to the debut of Part D, the HIV/AIDS Program estimated that 18-22% of current ADAP recipients would be eligible for pharmaceutical services through the Part D program. In compliance with federal directives, HAP staff advised all clients to select a PDP that offered the best coverage for their current medication needs and apply for the LIS--known to most clients as extra help. In the first year after the introduction of Medicare Part D, Louisiana ADAP saw a significant cost savings. This was due to the fact that most clients selected a PDP that had prescription gap coverage (i.e., no donut hole ) for name brand (i.e., Tier One ) prescription medications. That cost savings was not maintained, however, as all PDPs available in the state of Louisiana eliminated gap coverage for Tier One medications the following year. Currently Medicare Part D-eligible individuals are still required to enroll in a PDP and apply for LIS before they can access any available Part B assistance with out-of-pocket costs. Once an application for LIS has been approved or denied, all eligible individuals who reside in Louisiana can be referred to the HICP for assistance with their Medicare Part D premium. Outside of the New Orleans EMA, Part B views Medicare Part D like any other insurance plan and will cover co-payments through the CDAP. Part B-funded services maintains the same eligibility requirements for Medicare Part D clients as are currently in place for the general population served by these programs. The most difficult variable to determine for planning purposes is at approximately what time of the year the majority of the ADAP-eligible clients Page 87 of 133

89 (those >200% FPL) will go into their donut hole and return to ADAP for receipt of their ARV medications because they are unable to cover their out-of-pocket expenses. Veteran s Affairs Direct collaboration between HAP and the Veterans Affairs (VA) Program has been limited. Lack of coordination intensified when Hurricane Katrina damaged the main VA Hospital in New Orleans to the point that it became unfit for the delivery of any future services. Medical Case Managers at the provider level in other areas of the state access all available services from the VA for eligible clients, and do so before Part B funds are utilized. Services through the VA are quite comprehensive, and include primary medical care, home- and community-based care, prescription coverage and limited mental health and substance use counseling. There are only a few services offered through Ryan White Part B that veterans may not be able to access through the VA, such as food bank/home delivered meals, legal services and housing assistance (although many community-based transitional and temporary housing providers typically make veterans a priority population). Bureau of Primary Health Care The HIV/AIDS Program has participated in efforts to collaborate with entities in Louisiana funded through HRSA s Bureau of Primary Health Care. For example, Rhonda Litt, the Executive Director of the Louisiana Primary Care Association, which administers forty-two Community Health Center delivery sites across the State, has a seat on the Louisiana Governor s Commission on HIV/AIDS and HCV. This fosters frequent formal and informal communication between the Louisiana Primary Care Association (LPCA) and HAP. In addition, they are currently compiling a resource directory for their health centers which will include HIV resources. Coordination of Part B with other State and Local Programs Office of Public Health--Tuberculosis Control Program Although the HIV/AIDS Program does not share staff with the Tuberculosis Control Program, it closely collaborates with this State office which is located on the same floor as their administrative staff. HIV testing is a routine procedure in public TB clinics. Regional HIV Surveillance staff and Tuberculosis staff share information on individuals reported with dual infections and help refer patients into appropriate services. The HIV/AIDS registry and the TB registry are matched annually to track the impact of the HIV epidemic on TB and vice versa, and information about HIV/TB co-infection is reviewed by both programs for the purposes of planning, monitoring and evaluation. The screening and treatment of TB are also integrated into clinical services for persons with HIV infection in Louisiana. HIV-infected patients entering ambulatory care clinics across the state are screened with chest x-rays and tuberculin skin tests. Persons with TB infection who do not have active disease are usually referred to the regional TB clinic operated by the State Office of Public Health for evaluation and preventive therapy. They are given free Isoniazid (INH) and can pick up monthly supplies of INH at their local parish health unit. Persons with active TB disease are evaluated and followed at the regional TB clinic for their entire course of therapy. Directly-observed therapy (DOT) is the standard of treatment in the State. Each year, several HIV-infected individuals receive directly observed TB therapy in their home with the support of the Ryan White Part B Home Based Care Program. Office of Public Health Maternal Child Health Program There is a strong collaborative relationship between HAP and the State's MCH Program. The Program Directors of each entity attend quarterly meetings of all programs within the Center for Preventive Health to discuss cross program issues, as well as projects in progress. Every attempt is made to coordinate Page 88 of 133

90 efforts throughout the state. All MCH clinics offer HIV counseling and testing and both entities have collaborated closely to ensure that adequate pre- and post-test counseling services are offered to women of child-bearing age. Similarly, the statewide hotlines operated by each program have been updated to include pertinent information regarding the importance of HIV testing during pregnancy and the benefits of early and consistent prenatal care. Additionally, staff from both agencies participate in the Perinatal Workgroup and provide educational opportunities for prenatal provider networks throughout the state. Office of Public Health--STD Control Program The HIV/AIDS Program and the STD Control Program at the Louisiana Office of Public Health also have large areas of overlapping staff, oversight and day-to-day activities. The Program Managers attend the quarterly meetings with the Center for Preventive Health (previously mentioned above) to assure integration of HIV and STD testing, as well as strengthen referrals of newly diagnosed clients into care and treatment. At the regional level, the HIV prevention staff and the STD staff are housed together and jointly plan prevention activities. STD staff members at this level are partially funded with HIV prevention funds, and conduct HIV pre- and post-test counseling, HIV testing and HPS. Louisiana Department of Public Safety and Corrections Collaboration with the DPS&C has become substantially stronger over time. After the release of HAB Policy 01-01, Use of Ryan White CARE Act Funds for Transitional Social Support and Primary Care Services for Incarcerated Persons, the HIV/AIDS Program has convened cross-programmatic meetings across the state with members from the State Corrections community, community-based organizations providing HIV prevention interventions as well as care and treatment services, and members of the HAP Services, Prevention and Surveillance sections. These meetings provided extensive opportunities for brainstorming and information sharing, and served as the basis for the development of the Part B Discharge Planning Protocol for HIV-infected inmates. A discharge planning flow chart that outlines step-by-step actions for the development and implementation of a care plan for each uninsured inmate known to be HIV-positive was developed. This outlines the steps necessary to assist a client in leaving a correctional facility and entering into primary medical care and/or supportive services. The challenge of implementing successful discharge planning from State correctional facilities lies in the fact that persons imprisoned in one area of the state may have come from and be returning to an entirely different area of the state. A successful program requires a high level of communication and collaboration among Ryan White-funded providers in all areas of the State. Furthermore, staff members from probation and parole offices, pre-release work training facilities, juvenile correctional facilities and parish prisons have expressed interest greater collaboration and the need for HIV-related trainings. As such, the HIV/AIDS Program created and staffed the position of Corrections Specialist in 2008 to oversee this complex process. In 2002 the Louisiana Department of Corrections (DOC) established a program called CORE Correctional Organization for Re-entry. The program aims to improve prisons pre-release programs. Efforts have included collaboration with the Office of Motor Vehicles to operate a mobile unit which travels to prisons in order to provide soon-to-be-released inmates with identification cards. The program also works with the Social Security Administration to provide social security cards prior to release. A representative of CORE also participates on the Prison Project committee. In addition to these activities, the Medical Director of DOC continues to serve on the Governor's Louisiana Commission on HIV/AIDS and HCV, and has provided insight into issues faced by HIVinfected individuals who are incarcerated. As was mentioned previously, the Louisiana Department of Corrections and Orleans Parish Prison will begin phasing in opt-out testing during intake for all new inmates in January Page 89 of 133

91 State General Funds As stated previously in this document, HAP is responsible for the State General funds that are specifically devoted to HIV--approximately $2.5 million annually. These funds are used to support HIV prevention efforts, including infrastructure for community planning, monitoring community-based organizations contracts, building capacity of service providers at the regional level, training, printing of brochures and literature and the purchase and distribution of educational materials including rapid testing devices and condoms. Additional funds that are used to meet the State match include operating expenses of Stateadministered HIV clinic (e.g. salaries, benefits, supplies, etc.) and pharmaceutical expenditures incurred at each of the LSU regional public medical centers. They include: 1) medications dispensed to HIV-infected individuals that are not covered by the ADAP formulary, 2) ARV medications dispensed after the ADAP award to a medical center is exhausted, 3) the cost of providing viral load, genotypic, and phenotypic tests and 4) medications dispensed to individuals incarcerated at State and Parish correctional facilities. Louisiana State University Health Sciences Center (LSU HSC) provides quarterly reports that reflect the total expenditures of each medical center. Other State and Local Social Service Programs (i.e., General Assistance, Vocational Rehabilitation) In 2008, Louisiana experienced an unemployment rate that increased to 6% by the end of the year, but there were very few resources available to assist disabled residents with vocational rehabilitation. A statewide program administered by the Department of Social Services is designed to be a one-stop career development program that offers individuals with disabilities a wide range of services. However, since 1988 Louisiana Rehabilitation Services has been providing vocational rehabilitation services under an Order of Selection which has resulted in priority for services to citizens in Louisiana with the most significant disabilities and as such has not typically benefited persons living with HIV/AIDS. This resource was generally not considered for Part B service planning purposes. Resource Inventory and Profile of Providers by Service Category Please see the appendix for a complete list of providers by service category Page 90 of 133

92 SECTION II WHERE DO WE NEED TO GO: WHAT IS OUR VISION OF AN IDEAL SYSTEM We the participants involved in the Louisiana SCSN and CP process, envision a system that will ensure access to and awareness of high quality and culturally competent comprehensive preventative and primary medical care; ancillary medical services and support services that respond effectively to the emerging needs of all PLWH/A and reduce stigma. The Partners involved in the SCSN and CP process will work towards an improved continuum of care that incorporates the values of the following federal, state, regional and local entities: The four guiding principles of HRSA Ryan White Programs that revise care systems to meet emerging needs, ensure access to quality HIV/AIDS care, coordinate services with other health delivery systems and evaluate the impact of funds and make needed improvements. CDC s overall public health mission to help control the HIV/AIDS epidemic by working with community, state, national and international partners in surveillance, research and prevention and evaluation activities. The Southern AIDS Coalition s mission to promote accessible and high quality systems of HIV and STD prevention, care, treatment and housing throughout the South through a unique partnership of government, community and business entities. HIV clinics around the state that are committed to providing quality health care to adults and children living with HIV, with an emphasis on health maintenance, promotion and disease prevention. Delta Region AETC whose mission is to educate clinicians (physicians, dentists, nurse practitioners, physician assistants, nurses, pharmacists) in Louisiana, Mississippi and Arkansas about the rapidly-changing standards of care for individuals with HIV/AIDS. Delta Region AETC is part of a nationwide network providing HIV/AIDS training to health care providers. CBOs that focus on HIV-infected/affected woman, child and adolescents with the belief that all have the right to services that are comprehensive, culturally competent and family-centered. These CBOs are committed to assisting clients in maintaining their physical and emotional well-being by empowering them to improve and increase their access to resources in the community. The Louisiana HIV/AIDS Program whose goal is to educate citizens regarding HIV/AIDS prevention, to monitor disease trends, and to offer client centered services. The Mayor s Office of Health Policy & AIDS Funding in both New Orleans and Baton Rouge who are dedicated to providing services to PLWH/A. One of their primary functions is the identification of qualified health care facilities and nonprofit agencies to provide services that will decrease the rate of growth of HIV/AIDS within our community, and to increase the health and well-being of PLWH/A. The Louisiana OPH which promotes open access and assures that quality services are available to all citizens who may benefit from such assistance. Page 91 of 133

93 SECTION III HOV WILL WE GET THERE: HOW DOES OUR SYSTEM NEED TO CHANGE TO ASSURE AVAILABILITY AND ACCESSIBILITY OF CORE SERVICES? Page 92 of 133

94 Chapter 1: Goals, Objectives and Activities Barriers related to Access: Goal 1.0: To improve access to a high quality continuum of care with culturally competent comprehensive preventative and primary medical; ancillary medical and support services for persons living with HIV in Louisiana Long Term Objective Short Term Objectives Tasks Responsible Parties Decrease the level of 1.1 Increase the positivity rate in publiclyfunded Encourage providers to -All funded reported barriers to HIV testing sites from.98% to offer hours of operation that HCT-sites, care for PLWH/A in a 1.5%. reach at risk populations. OPH-HAP minimum of 6 service Increase HCT to all state -OPH-HAP, categories (with a prisons and parish and city jails. OPP, DOC minimum of 3 of those Increase HCT testing -OPH-HAP, 6 being core services) targeted at individuals from high All funded as measured by the risk populations. HCT-sites change in unmet need 1.2 Offer HIV counseling and testing to between the 2008 and 100% of pregnant women Statewide Needs Assessment 1.3 Increase the percent of newly identified, confirmed HIV-positive test results returned to clients from 83% to Increase referrals to appropriate services for pregnant women and HIVexposed/infected children Partner with the MCH program to measure the proportion of pregnant women who are offered HCT through PRAMS and Medicaid data Encourage all providers to follow the law to offer HCT to all pregnant women Institute legislative rule mandating the reporting of HCT for all pregnant women Encourage rapid testing as opposed to conventional testing Use DIS to follow up with Page 93 of 133 -OPH-HAP, OPH-MCH Program, Louisiana Commission on HIV/AIDS and Hepatitis C, Providers, LAAN, Medical Societies, RW Part D, Delta AETC, ACOG -OPH-HAP, Providers, OPH-STD Timeline To be completed by 12/31/2010 To be completed by 3/31/2011 To be completed by 12/31/2010

95 95%. individuals who do not return for confirmatory testing. 1.4 Increase to 70% the proportion of Implement and expand the individuals who access care within 6 LaPHIE initiative to all LSU months of diagnosis. HCSD hospitals for timelier reporting Document and track referrals to medical care Increase the # of clinical settings such as ERs that conduct HCT Integrate peer advocates in a minimum of 5 HIV primary 1.5 Increase to 60% the proportion of individuals who access care annually. care clinics Implement and expand the LaPHIE initiative to all LSU HCSD hospitals Seek new funding to increase case finding efforts Conduct focus groups and gather other qualitative data with people who have fallen out of care and develop programs based on findings Seek additional funding to develop and implement evidence-based programs to reduce and address HIV-related stigma Integrate peer advocates in a minimum of 5 HIV primary care clinics. Program - OPH-HAP, LPHI, LSU HCSD -OPH-HAP, Delta AETC -OPH-HAP - OPH-HAP, All RW Parts -OPH-HAP, All RW Parts -OPH-HAP, All RW Parts -OPH-HAP, CBOs and advocacy organizations -OPH-HAP, CBOs To be completed by 3/31/2011 To be completed by 3/31/ Increase knowledge and awareness of community based services that can be Use HIV/STD Infoline to increase awareness of Prevention Page 94 of 133 -OPH-HAP, All RW Parts, On-going. To be completed and

96 accessed by PLWH/A such as transportation, housing, oral healthcare and medications. with Positives programs Increase knowledge and scope of outreach workers Seek additional funding for a statewide social marketing campaign Explore different and innovative markets/platforms to increase awareness Integrate peer advocates in a minimum of 5 HIV primary care clinics Work with the Department of Corrections to develop a standard procedure to inform HIV-positive prisoners of HIVrelated resources prior to discharge CBOs, DHH -OPH-HAP, All RW-Parts, DOC assessed by 12/31/ Increase the number of Ryan White Part C grantees, rural clinics and mobile clinics in rural areas. 1.8 Increase percent of AIDS Service Organizations that report having an emergency preparedness plan to 95% Explore resources related to the provision of HIV-related care through mobile clinics Increase service delivery capacity through staffing and available appointments Develop a template for all ASOs to modify and adopt Train staff and clients on emergency preparedness plan. -OPH-HAP, All RW Parts -OPH-HAP, All RW Parts, DHH To be completed by 3/31/2011 To be completed by 6/1/2010 Page 95 of 133

97 Barrier/Need- Coordination: Goal 2.0: To improve coordination and collaboration between all providers in the continuum of care to enhance enrollment of HIV-infected individuals who are not in care and improve services for those already in care in Louisiana Long Terms Objective Short Term Objectives Tasks Responsible Parties Increase coordination 2.1 Increase collaboration through a minimum Share emergency plan -OPH-HAP, among all Ryan White of two Ran White Louisiana All Parts models with all RW grantees. All RW Parts grantees, DHH, OPH, meetings per year Share best practices DPS+C, DSS, Public related to cultural competency. and Private Medical Coordinate with formal Centers, Community and informal regional planning Based Providers and bodies, such as the HIV/AIDS Housing providers to Coalition. increase linkages and Develop annual funding availability of wrap profile. around services. 2.2 Increase exchange of data through an information sharing agreements between All RW Parts related to CAREWare and LabTracker. 2.3 Increase collaborative planning efforts by establishing a statewide planning group that meets a minimum of 4 times a year involving both prevention and services entities. 2.4 Increase the number of completed referrals to non-hiv specific medical and support services Standardize data collection Coordinate implementation of CAREWare across All RW Parts Collaborate to address future health care reform and HRSA CLD requirements Review and revise the Comprehensive Plan at least annually Monitor referrals noted in CAREWare and reported to CQI Steering Committee. -OPH-HAP, All RW Parts, CQI -OPH-HAP -OPH-HAP, CQI Timeline To be completed by 3/31/2010 To be completed by 3/31/2010 To be completed by 3/31/2010 To be completed by 3/31/2010 Page 96 of 133

98 Barrier- Lack of Services and Funding: Goal 3.0: Mitigate the effects of limited funding, providers and services to adequately address primary medical and psychosocial needs of persons living with HIV in Louisiana. Long Term Objective Short Term Objectives Tasks Responsible Parties Increase the 3.1 Increase by a minimum of $1 million percentage of persons dollars, new non-ryan White funding for reporting an ability to primary medical, specialty care and access a minimum of 6 supportive services for PLWH/A as identified service categories (with by needs assessment gaps. at least 3 of these being core services) on the 2011 Statewide Needs Assessment 3.2 Decrease the amount of unmet need by 5% related to access to care Review models of collaborative grant seeking Review Statewide Needs Assessment data to identify service gaps to be prioritized for increased funding Complete an inventory of funding resources across all funded agencies Build a collaborative network and/or partner with existing planning groups to identify funding opportunities in specific categories of need Continue to identify resources outside of Ryan White. Access to Care Encourage the use of peer support services Identify providers and agencies in rural and hurricaneaffected areas and increase access to services through transportation and telemedicine Require all funded agencies to provide the affected community with comprehensive Page 97 of 133 -OPH-HAP, All RW Parts, HIV/AIDS Coalition, Latino Health Coalition, OPP Collaborative, LCAP, etc. -CBOs, CACs, Medical Providers, Delta AETC -LSU HCSD, Part A- and C- funded clinics -CBOs, Timeline To be completed by 3/31/2011 To be completed by 3/31/2011

99 information on HIV resources Assure that 100% of funded agencies have a protocol or procedure to address the needs of clients who are not eligible for RW services Explore reasons behind and methods to reduce no show rates. -CBOs, OHP-HAP -OPH-HAP CQI 3.3 Decrease the amount of unmet need by 3% related to mental health and substance abuse services. Mental Health and Substance Abuse Ensure that 100% of new clients in Part B case management receive a mental health and substance use assessment Integrate education related to adherence and HIV transmission into mental health and substance use services. -OPH-HAP, CBOs -Part B- funded CBOs, OPH- HAP To be completed by 3/31/ Increase the percentage of PLWH/A who always take their medications as prescribed by their physician by 5%. Medications Reduce medication barriers by updating and expanding the statewide formulary in accordance with US PHS guidelines Providing access to ADAP medications outside of the State public health system Increase use of mail-order pharmacies to cut down transportation costs -LSU, OPH- HAP, Part A and TGA grantees -OPH-HAP, Communitybased clinics and CBOs -OPH-HAP, CBOs, Part To be completed by 3/31/2011 Page 98 of 133

100 A and TGA, Medical Centers 3.5 Decrease the amount of unmet need by 3% related to medical transportation services. Transportation Assess appropriate conveyance mechanism for clients based on their residence and medical condition (inclusive of gas vouchers, mileage reimbursement and transportation services) Increase awareness of public transportation options and services near a client s residence Assess client s access to transportation in 100% of care plans. -OPH-HAP, CBOs, Medical Providers -CBOs -CBOs To be completed by 3/31/2011 Page 99 of 133

101 3.6 Decrease the amount of unmet need by3% related to housing services. Housing Reduce barriers by exploring housing options such as Section 8, Shelter Plus Care, public housing, etc Leverage federal dollars such as HOPWA or HOME for rental subsidies or move/in expenses Increase dissemination of information about housing options and support services for PLWH/A Coordinate with other housing programs and planning efforts designed to increase affordable housing options for PLWH/A -HIV/AIDS Coalition, Housing subcommittee. -OPH-HAP, CBOs, HOPWA Providers -HIV/AIDS Coalition, CBOs, HOPWA providers -HOPWA providers and grantees To be completed by 3/31/ Decrease the amount of unmet need by 3% related to nutrition services. Nutrition Develop non-rw funded food opportunities Enhance nutritional education through relationships with local health care centers and hospitals Incorporate transportation component into food program and/or explore the feasibility of a mobile pantry. -CBOs -CBOs, CACs, Medical Providers -CBOs, OPH-HAP, Part A and TGA To be completed by 3/31/2011 Page 100 of 133

102 3.8 Decrease the amount of unmet need by 4% related to medical case management services. Medical Case Management Increase the number of medical case managers through expanded hiring and training of non-medical case managers for lower need clients Equitably distribute cases with the use of an acuity scale Seek other non-ryan White sources of medical case management funding Work with Louisiana Medicaid to improve medical case management services through increased collaboration Explore reasons behind and methods to reduce no show rates. -OPH-HAP, Part A and TGA -CBOs, OPH-HAP -CBOs, OPH-HAP, All RW Parts -OPH-HAP, CBOs -OPH-HAP, CQI To be completed by 3/31/ Decrease the amount of unmet need by 5% related to oral health care services. Oral Health Care Increase collaboration and information sharing between case managers and dental clinics through increased referrals, and follow up with clients who do not show to their dental appointment Develop oral health care support groups. -CBOs, oral health care providers, OPH-HAP, Medical Centers, CACs -CBOs, CACs To be completed by 3/31/2011 Page 101 of 133

103 Problem/Need- Training: Goal 4.0: Enhance the availability and quality of services for all PLWH/A by educating providers in the continuum of care. Long Term Objective Short Term Objectives Tasks Responsible Parties Increase the number of 4.1 Increase the number -Delta AETC trained providers in of trained providers as -Delta AETC the continuum of care evidenced by who report participation in trainings participation in at least offered by entities such three HIV-related as Delta AETC, Part A trainings per year. and TGA, OPH-HAP, NORAPC, etc Collect baseline data Increase training on HIV basic care to providers with 25 or less PLWH/A patients Increase trainings on perinatal transmission Increase capacity by identifying new provider trainees in the treatment and management of HIV/AIDS Increase training of clinical service providers on current standards for HIV management including therapeutic options, adverse drug reactions, managing antiviral resistance patterns and treatment adherence Increase training of dental providers and general medical providers on the needs of clients with HIV and early identification of oral health problems Increase training of case managers to include topics related to different program eligibilities, Medicare Part D, cultural competency, burn out and oral health care Provide at least one training per year related to each of the following: risk management, stigma, peer advocacy and prevention with positive programs Increase access to HIV testing and counseling & partner services training for HIV care providers. -Delta AETC, OPH-HAP -Delta AETC, OPH-HAP, Part A and TGA, CBOs -Delta AETC, OPH-HAP -Delta AETC, SPNS PI - OPH-HAP, Part A and TGA, Part D, SPNS PI -OPH-HAP -OPH-HAP Timeline To be completed by 3/31/2011 Increase the number of clients in the continuum of care who report participation in 4.2 Increase the number of clients trained as evidenced by participation in various Collect initial baseline data Train PLWH/A on the medication re-fill process Train PLWH/A on the development of an -CACs -Medical Centers, CACs, CBOs, To be completed by 3/31/2011 Page 102 of 133

104 at least three trainings. educational sessions. emergency preparedness plan through training with CACs, case managers and clinical providers Train PLWH/A on oral health care and resources available to PLWH/A OPH-HAP -CACs, CBOs, Medical Providers, OPH-HAP -SPNS PI, OPH-HAP, CBOs, CACs Page 103 of 133

105 Problem/Need- Advocacy: Goal 5.0: Improve patient care services and access to services by enhancing statewide and regional advocacy efforts Long Term Objective Short Term Objectives Tasks Responsible Parties Devise and execute a 5.1 Advocate for Louisiana ADAP to Promote administrative -OPH-HAP minimum of three increase financial eligibility criteria changes and additional federal advocacy campaigns beyond 200%. resources that would allow for the over the three year expansion of this program. period. 5.2 Advocate with the Social Security Administration and Medicaid to expand disability eligibility to HIV Work with our federal and State partners to expand such eligibility Work to promote ADAP costs as part of the True Out of Pocket (TrOoP) expenses for persons eligible for Medicare Part D. -OPH-HAP, LAAN, Louisiana Commission, NASTAD, All RW Parts Timeline To be completed by 3/31/2009 To be completed by 3/31/ Advocate to introduce needle exchange programs through community collaborations. 5.4 Advocate with HRSA to include nutritional assistance and medical transportation as core services, essential to improved health outcomes. 5.5 Development of a cabinet level Office of Housing with sufficient staffing to coordinate the State s response to shortages of affordable housing, the administration of federal and State housing resources, the reduction of blighted and/or abandoned housing and linkage with supportive services that Work with local law enforcement and State government to enact this change legislatively Promote this concept to HRSA through quantitative and qualitative mechanisms Increase the number of permanent supported housing units for PLWH/A Page 104 of 133 -OPH-HAP, LAAN, Louisiana Commission, All RW Parts -OPH-HAP, All RW Parts, NASTAD -OPH-HAP, All RW Parts, HAC, LAAN, Louisiana Commission To be completed by 3/31/2011 To be completed by 3/31/2011 To be completed by 3/31/2011

106 assist clients in maintaining their current housing options. 5.6 Collaborate across Ryan White funding to improve medical transportation services through Louisiana Medicaid and other State transportation providers Identify State providers of medical transportation Work with those entities, as well as Louisiana Medicaid, to improve client services. -OPH-HAP, All RW Parts. LAAN, Louisiana Commission, Louisiana Medicaid To be completed by 3/31/2011 Page 105 of 133

107 SECTION IV HOW WILL WE MONITOR OUR PROGRESS: HOW WILL WE EVALUATE OUR PROGRESS IN MEETING OUR SHORT-AND LONG-TERM GOALS? Page 106 of 133

108 Chapter 1: Evaluation, Monitoring and Implementation Monitoring the progress in achieving the stated Goals and Objectives, as well as evaluating the outcomes of various Tasks, are essential to ensure that short- and long-term goals and tasks will be achieved over the next three years. Those involved in the Louisiana Statewide Coordinated Statement of Need and Comprehensive Plan will monitor progress by improving the quality and availability of client level data, using this data to conduct monitoring and evaluation activities and measuring clinical outcomes. Improving the Quality and Availability of Client Level Data During FY 2009 almost all Ryan White grantees in Louisiana will transition to CAREWare as their client level data collection system and program database. This system will capture the client level data elements currently required by HRSA and allow for increased cross-part data collaboration. With the potential for data matching or data sharing between OPH-HAP (Part B grantee), the New Orleans EMA (Part A grantee) and Baton Rouge Transitional Grant Area, there could be additional opportunities for program monitoring and evaluation over time. Furthermore, discussions already underway to increase data sharing and collaboration between OPH-HAP and the Part C-funded LSU medical centers to meet the new client level data reporting requirements may yield even greater opportunities for program evaluation. Using Data for Monitoring and Evaluation Activities The Clinical Quality Management (CQM) Steering Committee of the OPH-HAP has been operational since May Their work was interrupted in the year following Hurricanes Katrina and Rita, but the group was re-established in January The role of this committee is to prioritize CQM projects and guide the development of various initiatives to improve health outcomes. Subcommittees provide periodic updates to the Steering Committee on the projects that have been completed, develop assessment tools, assess the methodologies of data collection and analysis, review the results of CQM activities, and make recommendations to HAP program staff. In an effort to promote quality care for patients across the continuum, HAP will continue to facilitate a CQM process that is inclusive of service providers-- regardless of the source of the funding--and Ryan White grantees and community members are welcome to join the CQM Committee. The mission of the HAP CQM Program is to prioritize clinical quality management and continuous quality improvement activities. The goals of that prioritization process, and the projects that occur as a result, are to ensure that: 1. US Public Health Service (US PHS) standards of care are being utilized throughout the state to improve the quality of care available to HIV-infected individuals, 2. Programs are delivering quality services that meet the expectations of HRSA and 3. Part B program operations, as well as those of other funded providers, are implemented efficiently to better meet the needs of the clients. The role of OPH-HAP staff is to facilitate the overall CQM process. DeAnn Gruber, PhD, HAP Evaluation Manager and Tory Taylor, MPH, HIV Prevention/Services Evaluator, work closely with the HAP Services and Data Units to coordinate activities of the Steering Committee and the Subcommittees. The CQM Steering Committee is representative of the many individuals and disciplines across the state who provide medical and supportive services to low income persons living with HIV/AIDS. Membership includes: primary care providers; representatives from the LSU HCSD Disease Management Initiative, Page 107 of 133

109 including the HIV clinical lead and the Acting Chief Medical Officer; the Director of the Delta Region AIDS Education and Training Center; providers of Ryan White Parts A, B, C and D services; the Principal Investigator of the SPNS Dental program; representatives of the Part A Planning Council; staff from the Part A administrative agency in New Orleans and the TGA administrative agency in Baton Rouge; and key staff from the Services, Evaluation, and Administrative components of the HIV/AIDS Program. In addition to the CQM Steering Committee, three subcommittees have been created to address certain core services: Medication Access, Oral Health Care and Mental Health Services/Substance Abuse Treatment Services. A fourth subcommittee to review issues related to Cultural Competency has been proposed for FY The subcommittees meet monthly to design and undertake projects and discuss the results of their endeavors. Each subcommittee has members that participate in the Steering Committee to report progress, share results, receive feedback on the projects and make proposals to change or modify their approach in addressing collaborative CQM projects. Furthermore, the working group that was established to create the 2009 Statewide Coordinated Statement of Need (SCSN) and the 2009 HIV Comprehensive Plan will continue to meet, at a minimum, on a biannual basis to review the Goals and Objectives that were established this year. Staff at OPH-HAP will convene these meetings, but all working group members will be expected to undertake the Tasks that have been established in each Goal area. Progress toward the Objectives and other accomplishments will be documented, Tasks and timelines will be revised as necessary, the responsible parties will be queried on any barriers to achieving the stated Goals and working group members will identify mechanisms to overcome the noted barriers. Measuring Clinical Outcomes The CQM Steering Committee will continue to reassess project activities, identify new activities that have emerged as a result of the changing needs of the HIV-infected population, determine subcommittee priorities and proceed with activities that will continually improve quality of services provided to all persons living with HIV/AIDS in Louisiana. Working in conjunction with the Client Level Data (CLD) reporting requirements as they are revised and implemented over the next three years, as well as the pertinent measurements that have been established through the HIVQual Monitoring Tool, at a minimum, the CQM Steering will assess the following indicators: Primary Medical Care QI Goal: Utilize LSU HCSD Disease Management data to track clinical outcomes and to ensure that 90% of patients are receiving care that is consistent with PHS standards of care. QI Measures: Percent of HIV-infected patients will receive primary medical care Percent of patients with CD4<200 will be prescribed 3+ antiretroviral medications Percent of patients will have CD4 and viral load laboratory tests in last year Percent of eligible patients will have PPD test placed within the past year Percent of patients will be prescribed PCP prophylaxis Percent of patients will be prescribed MAC prophylaxis Percent of women will have a current PAP smear Medication Access Page 108 of 133

110 QI Goals: 95% of ADAP enrollees are reviewed for ADAP eligibility and for Medicaid ineligibility two or more times in the measurement year. 100% of new anti-retroviral classes are included in the ADAP formulary within 60 days of the date of inclusion of new anti-retroviral classes in the US PHS Guidelines for the Use of Antiretroviral Agents in HIV1-infected Adults and Adolescents during the measurement year. 100% of the public medical centers will submit billing to Louisiana ADAP with less than a 5% variance in the cost for ARV and OI medications. QI Measures: Percentage of ADAP enrollees who are reviewed for ADAP eligibility and for Medicaid ineligibility two or more times in the measurement year Percentage of new anti-retroviral class included in the ADAP formulary within 60 days Percentage of cost variance for ADAP medications Oral Health QI Goals: 75% of surveyed patients in a medical setting will have an annual dental exam conducted by a primary care provider. 100% of surveyed patients in a medical setting will receive oral health education and a selfcare oral health kit. QI Measure: Percent of clients surveyed who report that primary care provider conducted a dental exam and received oral health education Mental Health/Substance Use QI Goal: 100% of clients newly enrolled in case management will receive a MH/SA assessment at time of intake. 100% of clients with identified need* will receive a MH/SA referral. 75% of clients who received a MH/SA referral will successfully access referred service. * client interested in pursuing service QI Measures: Percent of new patients with a MH/SA assessment completed Percent of referrals initiated Percent of referrals completed Page 109 of 133

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113 35. Arnsten J.H. et al. May 31, Impact of Active Drug Use on Antiretroviral Therapy Adherence and Viral Suppression in HIV-infected Drug Users. Journal of General Internal Medicine. 17(5): Hosek, S.G., Harper, G.W., and Domanico, R. May, Predictors of Medication Adherence Among HIV- Infected Youth. Psychology, Health & Medicine. 10 (2): Muphy, D.A., Wilson, C.M., Duako, S.J., Muenz, L.R., and Belzer, M. February Antiretroviral Medication Adherence Among the REACH HIV-Infected Adolescent Cohort in the USA. AIDS Care. 13(1): Martin J.A. et al. December Births: Final data for National vital statistics reports. 56 (6). Hyattsville, MD: National Center for Health Statistics. 39. Lockwood, C.C., and Gary, R Hurricane Season Marsh Mission. Retrieved January 9, 2009 from Jervis, R. March 16, Homeless Still Feel Katrina s Wrath. New Orleans: USA Today. 41. The National AIDS Housing Coalition. March, Examining the Evidence: The Impact of Housing on HIV Prevention and Care. Key Findings from the Third National Housing and HIV/AIDS Research Summit, Baltimore, MD 42. AIDS Housing of Washington. (Spring, 2003). Homelessness and HIV/AIDS. Seattle: AHW Fact Sheets. 43. Messeri, P., Abramson, D., Aidala, A., Lee, F., and Lee, G The impact of ancillary HIV services on engagement in medical care in New York City. AIDS Care, 14 (Supplement 1): S15-S Riley, E. D., Guzman, D., Perry, S., Bangsberg, D., and Moss, A Antiretroviral Therapy, Hepatitis C, and AIDS Mortality Among San Francisco's Homeless and Marginally Housed. Journal of Acquired Immune Deficiency Syndromes. 38(2): Louisiana Rural Health Association. The Importance of Rural Health. Retrieved January 9, 2009 from Bureau of Primary Care and Rural Health. September, Issue Brief on Rural Health. Baton Rouge. 47. Centers for Disease Control. September MMWR Analysis Provides New Details on HIV Incidence in U.S. Populations. 48. US Department of Health and Human Services. April, Care and Treatment for Hepatitis C and HIV Coinfection. HIV/AIDS Bureau. 49. Louisiana Department of Health and Hospitals, Office of Public Health Infectious Disease Epidemiology Annual Report. 50. National Institute on Drug Abuse. August, Drug Abuse and the Link to HIV/AIDS and Other Infectious Diseases. Retrieved January 9, 2009 from Rodríquez-Madera S & Toro-Alfonso, J Transgenders, HIV and Puerto Rico. Abstract presented at the 2000 United States Conference on AIDS, Atlanta, GA. Page 112 of 133

114 52. Kenagy G HIV Among Transgender People. AIDS Care. 14 (1): Kenagy G. & Bostwick W Health and Social Service Needs of Transgendered People in Chicago. Chicago: Jane Addams College of Social Work, University of Illinois at Chicago. 54. Simon P, Reback C, & Bemis C HIV Prevalence and Incidence Among Male-to-Female Transsexuals Receiving HIV Prevention Services in Los Angeles County. AIDS, 14(18), Risser J & Shelton A Behavioral Assessment of the Transgender Population, Houston, Texas. Galveston, TX: University of Texas School of Public Health. 56. Xavier, J. August 24, Final Report of the Washington Transgender Needs Assessment Survey. Washington, D.C.: Administration for HIV and AIDS, Government of the District of Columbia. Retrieved January 13, 2009 from Nemoto T, Luke D, Mamo L, Ching A, & Patria J HIV Risk Behaviors Among Male-to-Female Transgenders in Comparison with Homosexual or Bisexual Males and Heterosexual Females. AIDS Care. 11 (3): Nemoto T, Operario D, Keatley J, Han L, & Soma T HIV Risk Behaviors Among Male-to-Female Transgender Persons of Color in San Francisco. American Journal of Public Health, 94(7), Clements-Nolle K, Marx R, Guzman R, & Katz M HIV Prevalence, Risk Behaviors, Health Care Use, and Mental Health Status of Transgender Persons: Implications for Public Health Intervention. American Journal of Public Health, 91(6): Boles J & Elifson K The Social Organization of Transvestite Prostitution and AIDS. Social Science and Medicine, 39: Elifson K, Boles J, Posey E, Sweat M, Darrow W, & Elsea W Male Transvestite Prostitutes and HIV Risk. American Journal of Public Health, 83 (2): Sausa L The HIV Prevention and Educational Needs of Trans Youth University of Pennsylvania, Dissertation. 63. Barringer, F. January 23, Long After the Storm, Shortages Overwhelm New Orleans Few Hospitals. New York Times. 64. US Public Health Service. November Public health and clinical services status. 65. Rogalski, J The Crisis After the Crisis: Health Care in New Orleans Struggling to Recover. DukeMed Alumni News. 66. Louisiana Housing Finance Agency. February 15, Louisiana and New Orleans Metro Housing Needs Assessment. 67. U.S. Census Bureau Louisiana QuickFacts. Retrieved January 21, 2009 from The Brookings Institution Metropolitan Policy Program & Greater New Orleans Community Data Center. August The New Orleans Index Anniversary Edition: Three Years After Katrina. Page 113 of 133

115 Retrieved January 15, 2009 from Louisiana Department of Health and Hospitals, Office of Public Health, HIV/AIDS Program CQI Medication Access Challenges Summary Results. 70. Morral, A.R., McCaffrey, D., and Iguchi, M.Y. (2000). Hardcore Users Claim to be Occasional Users: Drug Use Frequency Underreporting. Drug and Alcohol Dependence, 57(3): New Orleans Regional AIDS Planning Council. January Comprehensive Care Plan New Orleans Regional AIDS Planning Council. May Louisiana Housing Survey for Case Managers of People Living with HIV/AIDS Data Report In Total and by Region. 73. UNAIDS. Policy Brief: HIV, Food Security, and Nutrition. Retrieved January 13, 2009 from Weiser S.D., Fongillo E.A., Ragland K., Hogg R.S., Riley E.D., and Bangsberg D.R. October 25, Food Insecurity is Associated With Incomplete HIV RNA Suppression Among Homeless and Marginally Housed HIV-Infected Individuals in San Francisco. J Gen Intern Med. [Epub ahead of print]. Retrieved December 3, 2008 from Economic Research Service Food and Nutrition Assistance Programs: Household Food Security in the United States, 2007 Retrieved January 13, 2009 from The Food Research and Action Center. The Impact of Rising Food Costs on Low-Income Americans. Retrieved January 13, 2009 from The Food Research and Action Center. State of the States: FRAC s Profile of Food and Nutrition Programs Across the Nation. Retrieved January 13, 2009 from Manski, R.J. and Brown, E Dental Use Expenses, Private Dental Coverage, and Changes, 1996 and Rockville, MD: Agency for Healthcare Research and Quality, MEPS Chartbook No. 17. Retrieved January 13, 2009 from Louisiana Department of Health and Hospitals, Office of Public Health, HIV/AIDS Program. November Ryan White Part B. Page 114 of 133

116 APPENDICES Page 115 of 133

117 Ambulatory Outpatient Medical Care Provision of professional diagnostic and therapeutic services rendered by a physician, physician's assistant, clinical nurse specialist or nurse practitioner in an outpatient setting Region I NO/AIDS Task Force 2601 Tulane Ave, Suite 500 New Orleans, LA Leading Edge Family Health Center KENNER SITE 3701 Williams Blvd., Suite 250 Kenner, LA MID-CITY SITE 4036 Canal Street New Orleans LA ALGIERS SITE 1501 Newton Street, Suite C New Orleans, LA HIV Outpatient Program (HOP) Medical Center of Louisiana at New Orleans 136 S. Roman St., New Orleans, LA TREATMENT, 4th Floor or Clinic N'R Peace 3201 General DeGaulle Drive, Suite 201 New Orleans, LA Region II The CARING CLINIC 4550 North Blvd, Suite 250 Baton Rouge, LA or HIV Ambulatory Care Program LSU Mid-City Early Intervention Clinic (EIC) 1401 N. Foster Drive Baton Rouge, LA Capitol City Family Health Center 3140 Florida Blvd Baton Rouge, LA Region III LSUHSC/Leonard J. Chabert Medical Center ID Clinic 1978 Industrial Blvd. Houma, La (clinic) Region IV LSUHSC/University Medical Center East Clinic 2390 W. Congress St. Lafayette, LA Region V LSUHSC/W. O. Moss Regional Hospital Comprehensive Care Clinic 1000 Walters St. Lake Charles, LA Region VI Huey P. Long Hospital CD4 Clinic 2351 Vandenburg Drive Alexandria, LA Region VII LSUHSC-Shreveport Viral Disease Clinic 6670 St. Vincent Ave. Shreveport, LA Premier Care and Learning Center 2110 Hollywood Avenue Shreveport, LA Region VIII LSUHSC/E. A. Conway Medical Center Med 3 Clinic 4864 Jackson Street Monroe, LA Page 116 of 133

118 Region IX LSUHSC/Lallie Kemp Medical Center HIV Clinic Highway 51 South Independence, LA Bogalusa Medical Center 433 Plaza Street Bogalusa, LA Page 117 of 133

119 Medical Case Management Range of client-centered services that links clients with health care, psychosocial and other services. Medical Case Management ensures timely and coordinated access to medically appropriate levels of health and support services and continuity of care, through ongoing assessment of the client s and other key family members needs and personal support systems. This also includes inpatient case management services that prevent unnecessary hospitalization, or that expedite discharge from an inpatient facility. Region I NO/AIDS Task Force 2601 Tulane Ave, Suite 500 New Orleans, LA N'R Peace 3201 General DeGaulle Drive, Suite 201 New Orleans, LA FACES (Family Advocacy, Care and Education Services) of Children's Hospital 4640 S. Carrollton, Suite 130 New Orleans, LA or Leading Edge Family Health Center KENNER SITE 3701 Williams Blvd., Suite 250 Kenner, LA MID-CITY SITE 4036 Canal Street New Orleans LA ALGIERS SITE 1501 Newton Street, Suite C New Orleans, LA Southeast LA AHEC 1302 J.W. Davis Drive Hammond, LA Region II Family Services of Greater Baton Rouge 4727 Revere Avenue Baton Rouge, LA HAART (HIV/AIDS Alliance for Region Two, Inc.) 4550 North Blvd, Suite 250 Baton Rouge, LA or Region III NO/AIDS TASKFORCE CASS (Collaborative AIDS Support Services) 813 Belanger St. Houma, LA Region IV ACADIANA CARES 203 West 3 rd Street Lafayette, LA Region V SLAC (Southwest Louisiana AIDS Council) 1715 Common Street Lake Charles, LA Region VI CLASS (Central Louisiana AIDS Support Services) th Street Alexandria, LA Region VII THE PHILADELPHIA CENTER 2020 Centenary Boulevard Shreveport, LA Volunteers of America 3949 North Blvd Baton Rouge, LA Page 118 of 133

120 Region VIII GO CARE (Greater Ouachita Coalition Providing AIDS Resources and Education) 2915 DeSiard St. Monroe, LA Region IX VOLUNTEERS OF AMERICA IX 823 Carroll Street Suite B Mandeville, LA Page 119 of 133

121 Non-Medical Case Management Range of client-centered services that include the provision of advice and assistance in obtaining medical, social, community-based, legal, financial, and other needed services. Non-Medical Case Management does not involve coordination and follow-up of medical treatments, as Medical Case Management does. Region I NO/AIDS Task Force 2601 Tulane Ave, Suite 500 New Orleans, LA N'R Peace 3201 General DeGaulle Drive, Suite 201 New Orleans, LA FACES (Family Advocacy, Care and Education Services) of Children's Hospital 4640 S. Carrollton, Suite 130 New Orleans, LA or Southeast LA AHEC 1302 J.W. Davis Drive Hammond, LA Region II Family Services of Greater Baton Rouge 4727 Revere Avenue Baton Rouge, LA Volunteers of America 3949 North Blvd Baton Rouge, LA HAART (HIV/AIDS Alliance for Region Two, Inc.) 4550 North Blvd, Suite 250 Baton Rouge, LA or Region III NO/AIDS TASKFORCE CASS (Collaborative AIDS Support Services) 813 Belanger St. Houma, LA Region IV ACADIANA CARES 203 West 3 rd Street Lafayette, LA Region V SLAC (Southwest Louisiana AIDS Council) 1715 Common Street Lake Charles, LA Region VI CLASS (Central Louisiana AIDS Support Services) th Street Alexandria, LA Region VII THE PHILADELPHIA CENTER 2020 Centenary Boulevard Shreveport, LA Region VIII GO CARE (Greater Ouachita Coalition Providing AIDS Resources and Education) 2915 DeSiard St. Monroe, LA Region IX VOLUNTEERS OF AMERICA IX 823 Carroll Street Suite B Mandeville, LA Page 120 of 133

122 Drug Reimbursement Drug Reimbursement Programs are established, operated, and funded locally by a Part A EMA or consortium to expand the number of covered medications available to low-income patients and/or to broaden eligibility beyond that established by a State-operated Part B or other Statefunded Drug Reimbursement Program. Medications include prescription drugs provided through ADAP to prolong life or prevent the deterioration of health. This definition does not include medications that are dispensed or administered during the course of a regular medical visit or that are considered part of the service visit. Region I NO/AIDS Task Force 2601 Tulane Ave, Suite 500 New Orleans, LA Leading Edge Family Health Center KENNER SITE 3701 Williams Blvd., Suite 250 Kenner, LA MID-CITY SITE 4036 Canal Street New Orleans LA ALGIERS SITE 1501 Newton Street, Suite C New Orleans, LA HIV Outpatient Program (HOP) Medical Center of Louisiana at New Orleans 136 S. Roman St., New Orleans, LA TREATMENT, 4th Floor or Clinic Region II Family Services of Greater Baton Rouge 4727 Revere Avenue Baton Rouge, LA Volunteers of America 3949 North Blvd Baton Rouge, LA HAART (HIV/AIDS Alliance for Region Two, Inc.) 4550 North Blvd, Suite 250 Baton Rouge, LA or HIV Ambulatory Care Program LSU Mid-City Early Intervention Clinic (EIC) 1401 N. Foster Drive Baton Rouge, LA St. Vincent De Paul 1647 Convention Street Baton Rouge, LA Region III NO/AIDS TASKFORCE CASS (Collaborative AIDS Support Services) 813 Belanger St. Houma, LA LSUHSC/Leonard J. Chabert Medical Center ID Clinic 1978 Industrial Blvd. Houma, La (clinic) (social services) Region IV ACADIANA CARES 203 West 3 rd Street Lafayette, LA LSUHSC/University Medical Center East Clinic 2390 W. Congress St. Lafayette, LA Page 121 of 133

123 Region V SLAC (Southwest Louisiana AIDS Council) 1715 Common Street Lake Charles, LA LSUHSC/W. O. Moss Regional Hospital Comprehensive Care Clinic 1000 Walters St. Lake Charles, LA Region IX VOLUNTEERS OF AMERICA IX 823 Carroll Street Suite B Mandeville, LA LSUHSC/Lallie Kemp Medical Center HIV Clinic Highway 51 South Independence, LA Region VI CLASS (Central Louisiana AIDS Support Services) th Street Alexandria, LA Huey P. Long Hospital CD4 Clinic 2351 Vandenburg Drive Alexandria, LA Region VII THE PHILADELPHIA CENTER 2020 Centenary Boulevard Shreveport, LA LSUHSC-Shreveport Viral Disease Clinic 6670 St. Vincent Ave. Shreveport, LA Region VIII GO CARE (Greater Ouachita Coalition Providing AIDS Resources and Education) 2915 DeSiard St. Monroe, LA LSUHSC/E. A. Conway Medical Center Med 3 Clinic 4864 Jackson Street Monroe, LA Page 122 of 133

124 Oral Health Care Diagnostic, preventive, and therapeutic services provided by general dental practitioners, dental specialists, dental hygienists and auxiliaries, and other trained primary care providers. Region I Southeast LA AHEC 1302 J.W. Davis Drive Hammond, LA HIV Outpatient Program (HOP) CLINICAL SERVICES Medical Center of Louisiana at New Orleans 136 S. Roman St., New Orleans, LA DENTAL Clinic, 3rd Floor Region II Family Services of Greater Baton Rouge 4727 Revere Avenue Baton Rouge, LA Volunteers of America 3949 North Blvd Baton Rouge, LA HAART (HIV/AIDS Alliance for Region Two, Inc.) 4550 North Blvd, Suite 250 Baton Rouge, LA or Capitol City Family Health Center 3140 Florida Blvd Baton Rouge, LA Region V SLAC (Southwest Louisiana AIDS Council) 1715 Common Street Lake Charles, LA Region VI CLASS (Central Louisiana AIDS Support Services) th Street Alexandria, LA Region VII THE PHILADELPHIA CENTER 2020 Centenary Boulevard Shreveport, LA Region VIII GO CARE (Greater Ouachita Coalition Providing AIDS Resources and Education) 2915 DeSiard St. Monroe, LA Region IX VOLUNTEERS OF AMERICA IX 823 Carroll Street Suite B Mandeville, LA Region III NO/AIDS TASKFORCE CASS (Collaborative AIDS Support Services) 813 Belanger St. Houma, LA Region IV ACADIANA CARES 203 West 3 rd Street Lafayette, LA Page 123 of 133

125 Mental Health Psychological and psychiatric treatment and counseling services provided to an individual with a diagnosed mental illness, conducted in a group or individual setting, and provided by a mental health professional, licensed or authorized within the State to render such services. This typically includes psychiatrists, psychologists, and licensed clinical social workers. Region I NO/AIDS Task Force 2601 Tulane Ave, Suite 500 New Orleans, LA FACES (Family Advocacy, Care and Education Services) of Children's Hospital 4640 S. Carrollton, Suite 130 New Orleans, LA or Region II Louisiana Health and Rehabilitation Center 2121 Wooddale Ave Baton Rouge, LA HAART (HIV/AIDS Alliance for Region Two, Inc.) 4550 North Blvd, Suite 250 Baton Rouge, LA or Region IV ACADIANA CARES 203 West 3 rd Street Lafayette, LA Region V SLAC (Southwest Louisiana AIDS Council) 1715 Common Street Lake Charles, LA Region VII THE PHILADELPHIA CENTER 2020 Centenary Boulevard Shreveport, LA Page 124 of 133

126 Substance Abuse Outpatient Provision of medical treatment and/or counseling to address substance abuse problems (including alcohol and/or legal and illegal drugs) provided in an outpatient setting rendered by a physician or under the supervision of a physician or by other qualified personnel. Region I Concerned Citizens For A Better Algiers 1409 Nunez St New Orleans, LA Odyssey House SUBSTANCE ABUSE TREATMENT 1125 N. Tonti Street New Orleans, LA Region II Louisiana Health and Rehabilitation Center 2121 Wooddale Ave Baton Rouge, LA HAART (HIV/AIDS Alliance for Region Two, Inc.) 4550 North Blvd, Suite 250 Baton Rouge, LA or Region V SLAC (Southwest Louisiana AIDS Council) 1715 Common Street Lake Charles, LA Region VII THE PHILADELPHIA CENTER 2020 Centenary Boulevard Shreveport, LA Page 125 of 133

127 Respite Services Home- or community-based non-medical assistance designed to relieve the primary care giver responsible for providing day-to-day care of an adult client. Region V SLAC (Southwest Louisiana AIDS Council) 1715 Common Street Lake Charles, LA Page 126 of 133

128 Direct Emergency Assistance Provision of short-term payments for essential utilities and medication assistance when other resources are not available. These short-term payments must be carefully monitored to assure limited amounts, limited use, and for limited periods of time. Region I NO/AIDS Task Force 2601 Tulane Ave, Suite 500 New Orleans, LA Region II Family Services of Greater Baton Rouge 4727 Revere Avenue Baton Rouge, LA Volunteers of America 3949 North Blvd Baton Rouge, LA HAART (HIV/AIDS Alliance for Region Two, Inc.) 4550 North Blvd, Suite 250 Baton Rouge, LA or Region III NO/AIDS TASKFORCE CASS (Collaborative AIDS Support Services) 813 Belanger St. Houma, LA Region IV ACADIANA CARES 203 West 3 rd Street Lafayette, LA Region V SLAC (Southwest Louisiana AIDS Council) 1715 Common Street Lake Charles, LA Page 127 of 133

129 Food Bank/Home Delivered Meals Provision of actual food, meals, or nutritional supplements. The provision of essential household supplies such as hygiene items and household-cleaning supplies should be included in this service. Region I Southeast LA AHEC 1302 J.W. Davis Drive Hammond, LA NO/AIDS Task Force 2601 Tulane Ave, Suite 500 New Orleans, LA Region III NO/AIDS TASKFORCE CASS (Collaborative AIDS Support Services) 813 Belanger St. Houma, LA Region IV ACADIANA CARES 203 West 3 rd Street Lafayette, LA Region V SLAC (Southwest Louisiana AIDS Council) 1715 Common Street Lake Charles, LA Region VI CLASS (Central Louisiana AIDS Support Services) th Street Alexandria, LA Region IX VOLUNTEERS OF AMERICA IX 823 Carroll Street Suite B Mandeville, LA Page 128 of 133

130 Housing Services Provision of short-term or emergency financial assistance to support temporary and/or transitional housing to enable the individual or family to gain and/or maintain medical care. Use of CARE Act funds for short-term or emergency housing must be linked to medical and/or healthcare or be certified as essential to a client s ability to gain or maintain access to HIV-related medical care or treatment. Region I NO/AIDS Task Force 2601 Tulane Ave, Suite 500 New Orleans, LA Region III NO/AIDS TASKFORCE CASS (Collaborative AIDS Support Services) 813 Belanger St. Houma, LA Region V SLAC (Southwest Louisiana AIDS Council) 1715 Common Street Lake Charles, LA Page 129 of 133

131 Medical Transportation Conveyance services provided, directly or through a voucher, to a client so that s/he may access health care services. Region I NO/AIDS Task Force 2601 Tulane Ave, Suite 500 New Orleans, LA FACES (Family Advocacy, Care and Education Services) of Children's Hospital 4640 S. Carrollton, Suite 130 New Orleans, LA or Leading Edge Family Health Center KENNER SITE 3701 Williams Blvd., Suite 250 Kenner, LA MID-CITY SITE 4036 Canal Street New Orleans LA ALGIERS SITE 1501 Newton Street, Suite C New Orleans, LA Southeast LA AHEC 1302 J.W. Davis Drive Hammond, LA Concerned Citizens For A Better Algiers 1409 Nunez St New Orleans, LA Region II Family Services of Greater Baton Rouge 4727 Revere Avenue Baton Rouge, LA Volunteers of America 3949 North Blvd Baton Rouge, LA First Parish Transportation 6057 Pino Street Baton Rouge, LA Region III NO/AIDS TASKFORCE CASS (Collaborative AIDS Support Services) 813 Belanger St. Houma, LA Region IV ACADIANA CARES 203 West 3 rd Street Lafayette, LA Region V SLAC (Southwest Louisiana AIDS Council) 1715 Common Street Lake Charles, LA Region VI CLASS (Central Louisiana AIDS Support Services) th Street Alexandria, LA Region VII THE PHILADELPHIA CENTER 2020 Centenary Boulevard Shreveport, LA Region VIII GO CARE (Greater Ouachita Coalition Providing AIDS Resources and Education) 2915 DeSiard St. Monroe, LA Region IX VOLUNTEERS OF AMERICA IX 823 Carroll Street, Suite B Mandeville, LA HAART (HIV/AIDS Alliance for Region Two, Inc.) 4550 North Blvd, Suite 250 Baton Rouge, LA or Page 130 of 133

132 Psychosocial Support Services Provision of support and counseling activities, including alternative services (e.g., visualization, massage, art, music, and play), child abuse and neglect counseling, HIV support groups, pastoral care, recreational outings, caregiver support, and bereavement counseling. Includes other HIV-related services not included in mental health, substance abuse or nutritional counseling that are provided to clients, family and household members, and/or other caregivers. Region I NO/AIDS Task Force 2601 Tulane Ave, Suite 500 New Orleans, LA Concerned Citizens For A Better Algiers 1409 Nunez St New Orleans, LA Belle Reve Page 131 of 133

133 Legal Services Provision of services to individuals related to powers of attorney, do-not-resuscitate orders, wills, trusts, bankruptcy proceedings, and interventions necessary to ensure access to eligible benefits, including discrimination or breach of confidentiality litigation as it relates to services eligible for funding under the CARE Act. Not included are any legal services that arrange for guardianship or adoption of children after the death of their normal caregiver Region I Leading Edge Family Health Center KENNER SITE 3701 Williams Blvd., Suite 250 Kenner, LA MID-CITY SITE 4036 Canal Street New Orleans LA ALGIERS SITE 1501 Newton Street, Suite C New Orleans, LA Statewide AIDSLAW 2601 Tulane Ave New Orleans, LA Page 132 of 133