State of Alabama Ryan White HIV/AIDS Statewide Coordinated Statement of Need (SCSN) and HIV/AIDS Comprehensive Plan 2012 - 2015 Submitted to: The U.S. Department of Health and Human Services, Health Resources and Services Administration, HIV/AIDS Bureau June 2012 Submitted By: The Alabama Department of Public Health Division of HIV/AIDS Prevention and Control Ryan White Part B Grantee Jane Cheeks, J.D., M.P.H. State AIDS Director Table of Contents CONTENTS PAGE Introduction I Participation in the Development of the SCSN Acknowledgements Legislative Requirements II Process for the Development of the SCSN Description of the Process Participation III HRSA Expectations SECTION I SCSN “Where Are We Now?” Description of Populations HIV Epidemic Overview Needs Obstructing Access to Care for HIV+ Needs of Individuals Aware of Their Status but Not in Care Assessment of Unmet Need Needs of Individuals Unaware of Their HIV Status Special Populations Shortfalls in Alabama’s Health Care Description of Input from Funded Entities Collaboration with HIV/AIDS Specific Organizations Special Considerations Part A and B B. Description of Alabama’s Continuum of Care C. Description of Care Needs D. Description of Priorities for Fund Allocations E. Description of Prevention and Care Needs F. Summary of Identified Barriers to Care G. Evaluation of 2009 Comprehensive Plan SECTION II – Where Do We Need to Go? A. Alabama’s Plan to Meet Challenges Identified in Evaluation of the 2009 CP B. The 2012 Proposed Care Goals C. Goals Regarding Individuals Aware of HIV Status but Not in Care D. Goals Regarding Individuals Unaware of their HIV Status E. Proposed Solutions to Close Gaps F. Proposed Solutions to Address Overlaps in Care G. Description of Proposed Coordination Efforts with Programs H. For Jurisdictions/States that Lost a TGA I. Describe the Role of Ryan White Program in Collaborating with MSA’s SECTION III – How Will We Get There? A. Strategy, Plan, Activities, Timeline to Close Gaps in Care B. Strategy, Plan, Activities, Timeline to Address Needs Aware of HIV Status C. Strategy, Plan, Activities, Timeline to Address Needs Unaware of HIV Status D. Strategy, Plan, Activities, Timeline to Address Needs of Special Populations E. Description Detailing Coordinating Efforts to Ensure Optimal Access to Care F. How the Plan Addresses Healthy People 2020 Objectives G. How the Plan Reflects the Statewide Coordinated Statement of Need H. How the Plan is Coordinated with and Adapts to Changes with Implementation of the Affordable Care Act I. How the Plan Addresses the Goals of the National HIV/AIDS Strategy J. The Strategy to Respond to Any Additional Changes in Care due to State or Local Budget Cuts SECTION IV – How Will We Monitor Progress? A. The Plan to Monitor and Evaluate Progress in Achieving Goals and Challenges SECTION V Bibliography SECTION VI Attachments 2 INTRODUCTION Purpose and Expectations The purpose of the Statewide Coordinated Statement of Need (SCSN) is to provide a collaborative mechanism to identify and address significant HIV care issues related to the needs of people living with HIV/AIDS (PLWH/As); and to maximize coordination, integration and effective linkages across Ryan White (RW) funding Parts. Goals outlined in the SCSN are used to: (1) set measurable objectives, (2) inform resource allocation decisions, (3) update the state Comprehensive Plan (CP), and to guide activities by all providers to improve HIV care and service delivery statewide. The SCSN is to identify broad goals and critical gaps in life extending care needed by people living with HIV/AIDs (PLWH/As) who are both in and out of care. The Early Intervention of Individuals Living with HIV/AIDS (EIIHA) Initiative is a legislative requirement that focuses on (1) individuals who are unaware of their HIV status, (2) how to bring HIV positive individuals into care and (3) linking HIV negative individuals to services in an effort to keep them HIV negative. Beginning in 2012, needs of individuals who are unaware of their HIV status are to be included in the SCSN and CP. The HIV/AIDS Bureau (HAB), Division of Service Systems (DSS) expects RW Part B grantees to submit an updated SCSN and CP plan every three years. This document contains Alabama’s updated SCSN and CP for the next three year planning cycle 2012-2015 submitted to the Health and Resources Administration (HRSA) on June 15, 2012. I. PARTICIPATION IN THE DEVELOPMENT OF THE SCSN Language in section 2617(b)(6) of the Ryan White HIV/AIDS Treatment Modernization Act of 2006 (Ryan White HIV/AIDS Program) requires grantees to conduct activities to enhance coordination across all RW Parts to ensure a collaborative process to update the SCSN and CP on a three year planning cycle. To meet HRSA requirements every effort was made to include multiple participants and resources in the updating process to ensure the collection of significant data and diverse viewpoints to provide an informative as well as comprehensive overview of HIV care and service needs and gaps in services in Alabama. The Alabama Department of Public Health (ADPH), the Bureau of Communicable Disease and Prevention, and the Division of HIV/AIDS Prevention and Control (Division) would like to thank everyone who offered their time and resources to participate in Alabama’s SCSN and CP development and updating process. Acknowledgements Over 500 HIV Consumers who participated in the AIDS Alabama 2010 Consumer Survey Peer Mentors serving through the Minority AIDS Initiative (MAI grant) Alabama’s Consumer Advisory Board (ACAB) Representatives RW Part C and D funded clinic Representatives RW Part B funded clinics and AIDS Service Organization (ASO) Representatives 3 Professionals from other state agencies offered valuable data in their comprehensive plans and publications referenced in Alabama’s 2012 SCSN and CP documents to describe the state’s diverse population, varied socio-economic backgrounds; and specific care and service needs included: The Division of Rural Health The Office of Minority Health The Division of Health Disparities The State TB Division The State STI Division The State Immunization/Hepatitis Division The Department of Mental Health and Substance Abuse The Alabama Center for Health Statistics The United Way of Central Alabama The Division of HIV/AIDS Control and Prevention staff actively participated in the updating process included: The HIV/AIDS Surveillance Branch The Quality and Evaluation Branch The Education and Information Branch The HIV/AIDS Peer Mentor Consultant The HIV/AIDS Prevention Branch The Prevention Nurse Coordinators The HIV/AIDS Direct Care Branch II. PROCESS FOR THE DEVELOPMENT OF THE SCSN Grantees are expected to use needs assessments and comprehensive plans to identify cross cutting issues and barriers to care identified by all RW funding Parts to form the foundation of the SCSN. The Division, as Alabama’s RW Part B grantee, is responsible for guiding the State’s SCSN and CP updating process. Since the early years in Alabama’s HIV epidemic, the Division has nurtured relationships with state and community partners to gain acceptance as a recognized leader and partner in reducing the spread of HIV disease. The ADPH, through the Division, sets program policies and provides guidance, technical assistance and financial support to AIDS service organizations (ASOs), the University of Alabama medical and hospital systems, the University of South Alabama medical and hospital systems, select Primary Care affiliates, fifteen Historically Black Colleges and Universities(HBCUs), the State STD program; and other public and private partnerships. Alabama’s system of HIV/AIDS programs is supported by ADPH through a network of direct care and prevention services. A wide range of those affected/infected, agency representatives and other interested community partners including the HIV Prevention Community Planning Groups (CPG) participate in the State’s annual Direct Care and Prevention Collaborative meeting that has evolved into the recognized forum for the State to conduct direct care and prevention planning activities. The Collaborative meeting is an annual state event to bring Consumers, other 4 stakeholders from HIV Prevention and Direct Care, and community partners together to participate in the needs assessment process. The Collaborative also provides an opportunity for participants to identify challenges the HIV/AIDS epidemic raises, and to discuss ideas to improve the effectiveness and coordination of HIV care and services in Alabama across all RW funding Parts. The Division supports Consumer participation in the State Prevention Community Planning Group (CPG) and through the Alabama Consumer Advisory Board (ACAB) by sponsoring an annual state Consumer Conference to focus specifically on Consumer issues. The ACAB consists of Consumers from across the state representing various Public Health Areas (PHAs). Consumers participate in the local consumer group to brainstorm ideas, discuss community needs, advocate for medical/dental and social services, and offer support to newly diagnosed persons. ACAB representatives participate in local prevention network meetings, consortia meetings, patient advisory board meetings and consumer advocacy meetings. The ACAB also provides a voice for consumer issues at the state level by participating in state community planning, primary and secondary prevention activities and direct care service planning. ADPH also supports the Peer Mentor Program through the State’s Minority AIDS Initiative (MAI) grant. The program consists of Peer Mentors representing PHAs across Alabama. Peer Mentors play an important role in providing education; and offering referrals and linkages to care and services for other PLWH/As in the state. Because Peeer Mentors are very knowledgeable about HIV care and services offered in their local areas, including gaps in HIV care and services, they are important participants in the State’s SCSN and CP updating process. Consumer data presented in AIDS Alabama’s 2010 Consumer HIV Needs Assessment Survey is an important resource used each three-year planning cycle to guide the development of HIV care and service goals presented in the SCSN, and to provide the framework for developing plans to improve care and services presented in the CP. The HIV/AIDS Division Surveillance Branch operates an active surveillance program for both AIDS and HIV infection reporting to collect extensive area specific epidemiological data used by each CPG, funded care and service agencies; and planning groups to develop prevention interventions, and to plan HIV care and services. Surveillance is responsible for the development of the State’s HIV/AIDS epi profile. The Alabama 2011 Epidemiological Profile is and important resource used to update Alabama’s SCSN and CP every three-year planning cycle. III. HRSA EXPECTATIONS H AB defines a continuum of care as, “An integrated service network that guides and tracks clients through a comprehensive array of clinical, mental, and social services in order to maximize access and outcomes.” The purpose of this section is to identify population in most need of HIV care and services in Alabama. This section will also describe barriers to care, and provide an overview of the current state of HIV healthcare and service delivery to include progress made in meeting previous goals as well as shortfalls in meeting planned goals. 5 SECTION I WHERE ARE WE NOW? a. A Description of Populations With HIV/AIDS in Alabama Including the Epi-Profile According to Kaiser State Health Facts, Alabama’s estimated total population in 2011 was 4,660,300 residents. Greater than 26% of the state’s population is reported to be younger than 19 years of age, and 14% is reported to be 65 or older. The remaining 60% of people in the state are ages 20 to 64. The state’s median age is 37.8 years old. The incidence of HIV infection in Alabama between the ages of 13-44 is over 81%, with over 60% of those being male. Men account for nearly 74% of all cases in the state. Ninety-one percent of all HIV infections in Alabama are reported as African-American males (45.22%), White males (26.16%), and African-American females (19.82%). Although African-Americans comprise 26.4% of the state’s population, they represent over 65% of the HIV/AIDS cases. Alabama ranks 42nd among US states in per capita income with 23% reported living in poverty. In December 2011, Alabama’s unemployment rate was 8.1% compared to the 8.5% rate in the US. New infections are disproportionately occurring in Alabama’s Black population (68.35%) and young people under the age of 34 (56.85%). Increased longevity due primarily to positive HIV/AIDS treatment outcomes; as well as increased testing, have significantly stressed Alabama’s public health care system and resources to keep up with the care and service needs of an increasing number of HIV residents living both in the State’s urban and rural areas. Considered primarily rural with 55 of the 67 counties located outside of the state’s major population centers, Alabama’s agricultural 'Black Belt' and Delta region counties, located in the western and southwestern part of the state respectively, encounter some of the highest HIV incidence rates, as well as the highest poverty and unemployment rates in the State. Though only representing 13.25% of the state’s population, the ‘Black Belt’ region has reported 22.8% (3574) of all cases. Alabama’s population can be divided into 3 population groupings: Major, Minor, and Rural. The Major Urban population centers include (Huntsville-Birmingham-Montgomery and Mobile). These Major Urban centers represent 34.2% (1,636,632) of the State’s population, and 69.7% (10,912) of the HIV/AIDS cases reported in the state. Alabama’s Minor Urban centers (population < 200,000) comprise 24.2% (1,156,292) of the State’s population, and 13.9% (2179) of the reported cases. The third population grouping belongs to the State’s rural areas that make up 41.6% (1,987,792) of the population, and account for 23.8% of cases reported. Alabama continues to experience an HIV/AIDS epidemic of moderate magnitude when contrasted to the experience of other states. This epidemic has affected persons in all gender, age, race, ethnicity, socioeconomic groups, and every county in Alabama. However, the effect has not been the same for all groups. Recent trends suggest a shift in the HIV/AIDS epidemic toward Black males and Black females, and high-risk heterosexual activity. With the number of deaths among people diagnosed with HIV/AIDS continuing to decline, and the number of people living with HIV/AIDS continuing to increase, it is extremely important to identify 6 those populations most affected and most at risk for HIV infection to plan for HIV/AIDS prevention and care, and allocation of limited resources. As of December 2011, HIV infection has been reported in over 15,000 Alabama residents, but only over 10,000 of these people are still living. It is likely that between 2,000 and 4,000 additional Alabama residents are also infected and unaware of that infection. Between 1982 and 2011, 17,858 Alabama residents had been diagnosed with HIV/AIDS and reported to the Alabama Department of Public Health (ADPH). Of those reported, 67.1% (12,189) were known to be living at the end of 2011. Currently 33.78% of the prevalent HIV/AIDS cases are between the ages 25-34 years and 28.06% live in Public Health Area IV. Seven hundred and nineteen Alabamians were diagnosed with HIV/AIDS and reported to ADPH in 2011. Furthermore, the rate of HIV/AIDS diagnosed among Blacks (38.4/100,000) was more than seven times higher than among Whites (5.3/100,000). Black females accounted for 78% (131) of the HIV/AIDS cases diagnosed among females in 2011. The rate of HIV/AIDS diagnosis for Black females (19.4 per 100,000) was higher than both White females (1.6 per 100,000) and White males (9.1 per 100,000). Black males represented 65.8% of the HIV/AIDS cases diagnosed among males in 2011. The rate of HIV/AIDS diagnosis among Black males (60.2/100,000) was more than six times higher than White males (9.1/100,000). In 2011, the rate of HIV/AIDS diagnosis was highest in Lowndes (53.10), Montgomery (38.37), Hale (38.07), Chambers (35.07), Jefferson (31.44) and Conecuh (30.24) counties. Among Blacks in 2011, heterosexual sex and male-to-male sex (69.9%) were predominate modes of exposure (excluding no identified risk). Among Whites, predominate mode of exposure reported was male-to-male sex (60.7%). HIV clinics and service organizations make application to ADPH for RW Part B funding to provide HRSA defined core service priorities and support services with appropriate justification based on HRSA’s 75/25 requirement. Funding decisions are made using a formula based on Alabama’s current HIV/AIDS Epidemiologic Profile, service utilization and unmet need data. Social workers/Case managers and Clinicians employed in the State’s RW funded HIV clinics and service organizations are responsible for the coordination of direct care and service delivery. HIV care and services in Alabama are primarily located in the State’s urban areas, however, alternate care and services are offered at satellite clinics located in many rural areas across the State. As of December 2011, Alabama’s ADAP offers medication services with an enrollment cap of 1700 and a waiting list for applicants to receive medication services. The ADAP formulary offers 72 medications including at least one from each class of HIV medications to remain in compliance with HRSA funding requirements. In addition, 13 “Other Medications” are available that include hepatitis medications. 7 The Integrated Epidemiologic Profile provides information about the current HIV/AIDS epidemic in Alabama. This profile describes the socio-demographic, economic and geographic characteristics of people living with HIV/AIDS and at risk for HIV infection in Alabama. The profile is a resource for guiding prevention interventions and service delivery efforts; to justify and obtain funding for the implementation of prevention and service programs, and to improve and evaluate HIV-related programs and policies in Alabama. (The Alabama 2011 Epidemiological Profile is included in the SCSN- Attachment 1) The profile is divided into 5 key sections: 1. What are the socio-demographic characteristics of the general population for Alabama? 2. What is the scope of the HIV/AIDS epidemic in Alabama? 3. What are the indicators of risk for HIV/AIDS infection in Alabama? 4. What are patterns of utilization of HIV/AIDS services? 5. What are the number and characteristics of persons who known they HIV positive, but are not receiving primary medical care? Data Sources Data was compiled from a variety of sources. Anyone citing or interpreting data should acknowledge that the data sources have strengths and limitations. HIV/AIDS Surveillance Data ADPH has been collecting confidential AIDS and HIV information since 1982 and 1987 respectively. Standardized case report forms are used to collect socio-demographic information, mode of exposure, laboratory and clinical information and vital stats. HIV data may underestimate the number of recently infected individuals because some infected persons have not been tested and do not know they are infected. In addition, newly diagnosed cases may be reported to the health department at any point during the clinical spectrum of disease. Therefore, HIV infection provides an estimate of the number of persons known to be HIV infected. STD Case Reporting The ADPH Division of STD Control conducts statewide surveillance to determine the number of reported cases of STDs and to monitor trends. Services provided by the Division of STD Control include partner counseling and notification to help reduce the spread of STDs, referral services for examination, treatment, and social services. Cancroids, Chlamydia, gonorrhea, HIV, and syphilis are reportable STDs in Alabama. STD surveillance data can serve as a surrogate marker for unsafe sexual practices and demonstrate the prevalence of changes in a specific behavior. STD data are widely available at the state and local level. Because of shorter incubation periods between exposure and infection, STDs can serve as a marker of recent unsafe sexual behavior. In addition, certain STDs (e.g. ulcerative STDs) can facilitate the transmission or acquisition of HIV infection. Finally, changes in trends of STDs may indicate changes in characteristics of persons who delay testing, or who are not tested at all. Birth and Death Data The Center for Health Statistics for the ADPH receives information on all births and deaths occurring in Alabama. The birth certificate includes demographic information on the newborn 8 and the parents, insurance status, prenatal care, prenatal risk factors, maternal morbidity, mode of delivery, pregnancy history, and clinical characteristics of the newborn. Death certificates include demographics, underlying cause of death, and contribution of selected factors to death. The data can be used to determine the number of deaths related to HIV/AIDS across the state or in a specific area. Deaths resulting from or whose underlying cause was HIV/AIDS might be under reported on a death certificate. Clinical information related to HIV/AIDS may be missing. U.S. Bureau of the Census The Census Bureau collects and provides information about the people and economy of the United States. The Census Bureau’s website (http://www.census.gov/) includes data on demographic characteristics (e.g. race, ethnicity, gender, age) of the population, family structure, educational attainment, income level, housing status, and the proportion of persons who live at or below the poverty level. State and county-specific data (e.g. reports on population changes) are easily accessible, and links to other websites with census information are included. State Healthcare Access Research Project (SHARP) The project details the successes, challenges, and opportunities for healthcare access in Alabama. The Health Law Clinic of Harvard Law School and the Treatment Access Expansion Project (TAEP) with support and collaboration from Bristol-Myers Squibb conducted the project. The purpose of the project is to provide a tool to bring healthcare to more people living with HIV/AIDS. Direct Care Update Report The HIV/AIDS Direct Care and Services Branch oversees Alabama’s RW Part B program activities that includes medical and social services, medical and non-medical case management and Alabama’s AIDS Drug Assistance Program (ADAP). Alabama’s HIV care and service providers make application for RW funding to provide HRSA defined core medical and support services, and are funded based on a formula that is calculated using agency documented patient population. ADAP’s goal is to reduce associated morbidity and mortality among HIV infected persons by delaying the progression of HIV disease through prevention and treatment of HIV disease. Alabama’s Enhanced Referral Tracking System (ERTS) Alabama’s Enhanced Referral Tracking System (ERTS) provides significant data in determining the demographics and location of Alabama residents who know their HIV/AIDS status and are not in care. Youth Risk Behavior Surveillance Survey (YRBSS) The YRBSS is a self-administered questionnaire given every two years to a representative sample of students in grades 9 – 12 at state and local levels. In Alabama, the survey is administered at the state level and includes questions related to sexual behavior and drug use. The YRBSS is a standardized questionnaire, so comparisons can be made across participating jurisdictions. 9 Jurisdictions may also add questions of local interest. However; because the YRBSS project relies upon self-reported information, sensitive behavior information may be under or over reported. Because the YRBSS questionnaire is administered in school, the data are representative only of adolescents who are enrolled in school and cannot be generalized to all adolescents. For example, students at highest risk, who may be more likely to be absent from school or to drop out, may be under-represented in this survey, especially those in upper grades. In interpreting this data in regards to HIV/AIDS, it is important to note that the questionnaire does not include questions about homosexual or bisexual behavior. The Socio-Demographic Characteristics of Alabama’s General Population Population The U.S. Census Bureau estimates of the population of Alabama for 2011 was 4,660,300. Alabama is composed of 67 counties. County populations ranged from a low of 9,045 persons (Greene County) to the most populated county, Jefferson, with 658,466. The newly-defined, seven county “Birmingham-Hoover MSA” was defined in 2003 as encompassing Bibb, Blount, Chilton, Jefferson, St. Clair, Shelby and Walker counties and represents over one million persons and 24.2 percent (1,128,047/4,660,300) of Alabama’s population. The state is considered largely rural with four large metropolitan statistical areas (MSAs): Birmingham- Hoover, Huntsville-Decatur, Mobile, and Montgomery. Demographic Composition The 2010 U.S. Census Bureau count reflects that the racial and ethnic composition of Alabama was 68.5% White, 26.2% Black, 3.9 % Hispanic, 1.1% Asian, and 0.6% Native American. Age and Sex In 2010, the median age of Alabamians was 37.8 years. More than 34% of the population was younger than 24 years old, and 13.8% of the population was 65 or older. The female to male ratio in the total population was 1.06. Poverty, Income, and Education The median household income in the state of Alabama for 2011 was $40,976; ranking Alabama 46th in the nation. Personal income in the state was 42nd in the ranking at $33,516. As indicated in AmericasHealthRankings.org 2011 data, people with lower income tend to experience higher incidence of illness and death. Twenty-eight percent of households received Social Security income. In 2010, 23% of all Alabamians were living below the poverty level. Thirty-two percent of children less than 18 years-of-age were living below the federal poverty level. That places Alabama as 39th in the national rankings for children living in poverty. Fourteen percent of people age 65 years and older were reported living below the poverty level. Unemployment in the state was ranked 31st nationally at 9.5. Twenty-one percent of all families and 38.5 percent of families with a female head of household and no husband present had incomes below the poverty level. The 2010 census reported that 82.1% of Alabama residents age 25 years and older attained a high school diploma or higher with 21.9% reporting a bachelor’s degree or higher. Among the same 25-year and older age group, 6.2% reported less than a 9th grade education and 11.7% reported some high school without graduation. 10