Epidemiologic Profile of HIV in Connecticut

Transcription

1 Connecticut Department of Public Health TB, HIV, STD & Viral Hepatitis Section Epidemiologic Profile of HIV in Connecticut ,000 HIV continuum of care, Connecticut, 2011 (data reported through 2012) 12,000 11,985 18% unaware 10,148 Number 9,000 6,000 36% not in care (no report of VL or CD4) 6,528 75% 5,149 4,866 3,000 79% 0 HIV infected HIV diagnosed One visit Two visits Suppression In 12 months Three months apart 200 copies/ml

2 Abbreviations: AAMR AIDS CDC CI DPH EMA HCV HIV HRSA IDU MSM PLWH STD TGA Age adjusted mortality rate Acquired immunodeficiency syndrome Centers for Disease Control and Prevention Confidence interval Department of Public Health Eligible metropolitan area hepatitis C virus Human immunodeficiency virus Health Resources and Services Administration Injection drug user Men who have sex with men People living with HIV or AIDS Sexually transmitted disease Transitional grant area

3 Connecticut Department of Public Health Jewel Mullen, MD, MPH, MPA, Commissioner Infectious Disease Division Matthew L. Cartter, MD, MPH, State Epidemiologist TB, HIV, STD and Viral Hepatitis Section Christian D. Andresen, Section Chief Heidi Jenkins, Program Coordinator HIV Surveillance Program Rory Angulo, MD, MBA, Case/Molecular Surveillance Amor Gamarra-Gross, Office Administration and Data Entry Heather Linardos, MPH, Case and Incidence Surveillance Suzanne Speers, MPH, Data Manager Jennifer Vargas, MPH, Case Surveillance Melinda Vazquez-Yopp, Incidence Surveillance Acknowledgements: The HIV Surveillance Program acknowledges the contributions of Department of Public Health staff who provided information for this report: Mukhtar Mohamed (Sexually Transmitted Diseases); Diane Aye (Behavioral Risk Factor Survey); Lloyd Mueller and Jon Olson (Population estimates, Deaths and Hospitalizations); and Ramon Rodriguez-Santana (HIV Prevention). Contact information (this document can be found at the website below): HIV Surveillance Program Capitol Avenue MS #11-ASV Telephone: (860) P.O. Box FAX: (860) Hartford, CT Website:

4 Table of Contents Executive Summary HIV SURVEILLANCE ONE-PAGE FACTSHEET Introduction... 1 Sections 1. Connecticut s People HIV Surveillance HIV Cases Characterizing Recently Diagnosed HIV Cases HIV Incidence in Connecticut and the US Reason for Testing in Newly Diagnosed HIV Cases People Living with HIV HIV Deaths and Hospitalizations CDC Funded Counseling and Testing Sites Ryan White Grant Areas Behavioral Risk Sexually Transmitted Diseases Surveillance Gonorrhea Chlamydia Matching Chlamydia and Gonorrhea with the HIV registry Syphilis Partner Services Hepatitis C Acute Hepatitis C Chronic Hepatitis C Appendices 1. HIV Surveillance Methods Description of Data Sources Glossary... 77

5 Executive Summary Since 1981, over 20,000 HIV cases have been reported in Connecticut and of these almost half have died. The Department of Public Health (DPH) monitors HIV disease through a system of reporting by laboratories and physicians. Information gathered through this system is used to analyze trends to determine who is at risk for infection and where services need to be provided. Each year approximately, $52.5 million comes from state and federal sources to provide prevention services for infected people and others at high risk, HIV medications, housing support, syringe exchange, HIV testing, and other services. The HIV Epidemiological Profile provides information about the trends and distribution of HIV to planning groups, DPH staff whose mission is to allocate prevention and care funding and other interested parties. Additional information about HIV and annual updates to the data provided here can be found on the DPH website ( A quick look at HIV in Connecticut: As of December 2011, 10,585 people were living with HIV in Connecticut (296 per 100,000). HIV is found disproportionately in certain groups including blacks and Hispanics who, although they make up only 24% of Connecticut s population, comprise 65% of all HIV cases. During , 1,915 HIV cases were newly diagnosed and reported to DPH. Of these, 44% were men who have sex with men (MSM), 22% injection drug use (IDU), 32% heterosexual contact (risk percent adjusted for unknown risks). Of concern, 30-40% of newly diagnosed cases meet the criteria of AIDS, meaning they have likely been infected for many years. The ongoing late tester problem supports the need for more widespread HIV testing. Data from the HIV and STD surveillance systems continue to point to ongoing transmission of syphilis and HIV in MSM. During , 247 syphilis cases were in MSM, 82% of all cases reported. Importantly, 40% of these men were co-infected with HIV. Many of these cases stem from contacts made through the internet and anonymous sex, highlighting the need for creative new prevention techniques. The number of HIV cases with IDU as a risk factor has decreased in recent years, but data from the hepatitis C surveillance system suggests sharing of needles is still occurring. During , 177 acute hepatitis C infections were reported and 62% had IDU as a risk factor. None of these cases were previously reported with HIV and 41% were less than 30 years of age. Although HIV has affected most cities and towns in Connecticut, the highest numbers continue to occur in the largest cities. Of the 10,585 people living with HIV, 45% reside in Hartford, New Haven, or Bridgeport. In 2011, 67% of people living with HIV diagnosed through 2010, had at least one viral load test which can be used as an indicator of entry into care. In 2010, 93% of adolescents and adults diagnosed with HIV were linked to care within 12 months of their diagnosis. HIV is a chronic infection and the many advances in scientific research and medical treatment have meant longer life spans. Currently, 42% of people living with HIV are over the age of 50. The aging of this population will have growing implications for both care and prevention. In the United States there are 871,846 people living with HIV. Among all states, Connecticut ranks 7th in the rate of people living with AIDS. 1 1 Centers for Disease Control and Prevention. HIV Surveillance Report, 2010; vol Published March Accessed June 4, 2013.

6 Quick stats about HIV in Connecticut HIV Surveillance Program From , 20,091 cases of HIV have been reported to DPH. 9,506 (47%) have died and 10,585 are currently living with HIV. Among people living with HIV in Connecticut: HIV cases, by sex: % male 34% female HIV cases, by race: % 3% white 32% black 32% hispanic 0 Male Female 0 White Black Hispanic 1% < 20 6% % % % % >60 35% injection drug use 24% MSM 22% heterosexual 17% perinatal/other 2% MSM/IDU HIV cases, by age: < < % 6% 13% % HIV cases, by risk: MSM IDU MSM/IDU Hetero Perinatal/Other Perinat/Other 17% MSM 24% % % Hetero 22% MSM/IDU 2% IDU 35% 2/2013 HML CT DPH HIV Surveillance Program 410 Capitol Ave, Hartford, CT Please visit us on the web at:

7 Introduction What is an Epidemiologic Profile? o The Epidemiologic Profile is a document prepared by the Department of Public Health describing HIV in Connecticut. As provided in the Centers for Disease Control and Prevention (CDC) guidance, the goals of the Epidemiologic Profile are the following: Provide a thorough description of the HIV epidemic among the various populations (overall and subpopulations) in Connecticut; Describe the current status of HIV cases in Connecticut and provide some understanding of how the epidemic may look in the future; Identify characteristics of the general population and of populations who are living with, or at high risk for, HIV in defined geographical areas and who need primary and secondary prevention or care services; Provide information required to conduct needs assessments and gap analyses. Organization of the Epidemiologic Profile: o CDC Guidance: The CDC provides guidance for the production of Epidemiologic Profiles. In the most recent version of CDC guidance, it is recommended that state Epidemiologic Profiles provide information for both: Prevention: Community Planning Group; Care: Ryan White Statewide Planning Consortium; In Connecticut these planning groups are combined into an integrated planning body Connecticut HIV Planning Consortium (CHPC). o Population of Connecticut: Information is included to provide background about the makeup of Connecticut s population. Since the most recent census was conducted in 2010, data included in the 2013 Epi Profile is based on more recent estimates generated by the US Census and DPH. Additional information can be found at o HIV Surveillance: The majority of the material presented is from the HIV surveillance system. This material is organized into several sections that include information about cumulative HIV cases, trends in HIV cases, incidence, hospitalizations and deaths, people living with HIV, and HIV cases in Ryan White Service areas (New Haven Eligible Metropolitan Area (EMA) and Hartford Transitional Grant Area (TGA)). Data will also be shown primarily as HIV cases. The AIDS designation, while still important as a measure of disease progression, is not useful as an indication of trends in new diagnosis of infection. HIV cases are 1

8 counted in the year of the initial diagnosis with an HIV infection, regardless of whether the person met the criteria for AIDS or not. o Behavioral Risk Factor Survey: This survey is a random, weighted telephone survey conducted annually in Connecticut. Several questions about HIV are included in the survey and offer insight into HIV testing and risk behavior in the general population. Selected results from the 2011 survey are included in this report. o Sexually Transmitted Diseases Surveillance: This information is relevant to HIV prevention because STDs can be transmitted in the same manner as HIV and tend to get diagnosed and reported much sooner after infection than HIV. The high proportion of recent syphilis cases associated with MSM underscores this connection with HIV. o Hepatitis C Surveillance: This data is of interest to HIV prevention and care because in Connecticut, IDU is a major risk behavior for both hepatitis C and HIV. Reading the Epidemiologic Profile: o The contents are presented in six sections. o Each of the sections can be read as a stand-alone document. o Within each section, subsections are numbered, based on the number of the section in which they appear. For example, Section 2, about various HIV surveillance topics, has eight subsections, 2.1 to 2.8. o Tables and figures are numbered according to their section. For example, two tables in subsection 2.1 would be numbered and Figures and Tables are numbered in individual sequence. For example, there could be both a Table and a Figure Sources HIV surveillance information: o HIV Surveillance Program website ( The web page is updated every January. Many of the HIV tables included in the Epidemiological Profile can also be found on the HIV surveillance website. o 2013 HIV Epidemiologic Profile ( Many of the tables and figures in the 2013 Epi Profile are continuations or updates of tables and figures in the 2010 Epi Profile. Some material in the 2010 Epi Profile is not repeated in the 2013 Epi Profile. o HIV statistics for Connecticut and other states ( o AIDSVu an interactive mapping tool ( o School Health Survey is conducted in consenting schools with high school students, grades Questions are included about sexual and drug use activity. 2

9 A complete report of findings is available on the DPH website ( o Connecticut Epidemiologist: The Connecticut Epidemiologist is an electronic newsletter produced by the Infectious Disease Section at DPH for medical providers, local health staff, infection control practitioners and others. Several articles about HIV have been published in recent years. HIV sex partner notification services available, electronic matching of the HIV/AIDS and hepatitis C surveillance registries Estimating HIV incidence in CT, HIV viral load reporting update HIV genotype testing a survey of infectious disease specialists, routine HIV testing recommended in healthcare settings, evaluating HIV/AIDS reporting HIV in Connecticut - 30 Years Later o CDC website ( National HIV/AIDS statistics HIV/AIDS Surveillance: Questions and Answers HIPAA Privacy Rule and Public Health CDC HIV/AIDS surveillance slide sets Estimating the national population size of men who have sex with men Diagnoses of HIV infection in the United States and Dependent Areas, NCHHSTP Atlas an interactive mapping and data tool for accessing data collected by CDC s National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention Estimating HIV Incidence in the United States, Selected MMWR articles ( ) o Twenty-Five Years of HIV/AIDS--United States,

10 o o Human Immunodeficiency Virus (HIV) Risk, Prevention, and Testing Behaviors--United States, National HIV Behavioral Surveillance System: Men Who Have Sex with Men, November 2003-April Revised Recommendations for HIV Testing of Adults, Adolescents, and Pregnant Women in Health-Care Settings. o HIV Prevalence Estimates--United States, o Estimation of HIV incidence in the United States. JAMA. 2008; 300:520 o Subpopulation Estimates from the HIV Incidence Surveillance System-- United States, o Late HIV Testing--34 States, o o Revised Surveillance Case Definitions for HIV Infection Among Adults, Adolescents, and Children Aged <18 Months and for HIV Infection and AIDS Among Children Aged 18 Months to <13 Years--United States, Monitoring selected national HIV prevention and care objective by using HIV surveillance data- United States and 6 US dependent areas

11 Section 1: Connecticut s People Information in this section comes primarily from the 2010 census. During 2000 to 2010 it is estimated that the population of Connecticut increased by 168,532 (5%) to 3,574,097 (Table 1.1). Selected trends in population included the following: o Hispanics increased by 158,764 (50%). o Blacks increased by 39,548 (13%). o Asians increased by 52,527 (64%). o Whites decreased by 92,583 (-4%). Due to the relatively large change in Hispanic numbers and the significant impact of HIV in that population, Table 1.2 is included to provide information on the Hispanic population and establish that ethnic populations are not homogenous and are subject to change which can impact HIV prevention and care. Table 1.3 shows the estimate of town populations for the 169 communities for which the HIV surveillance system collects information. These data can be used for town-specific rates using prevalence or single year reporting data shown elsewhere in the profile or on the web. Table 1.1: Connecticut population from the 2000 and 2010 Census, Connecticut. Race and Hispanic ethnicity 2000 census 2010 census Percent Percent Percent Race/ethnicity category Number of total Number of total Change difference Total 3,405, % 3,574, % 168, % White non-hispanic 1 2,638, % 2,546, % -92, % Hispanic/Latino 2 320, % 479, % 158, % Black/African American non-hispanic 3 295, % 335, % 39, % Asian 4 81, % 134, % 52, % Two or more races 4 52, % 59, % 6, % Some other race 4 8, % 12, % 4, % American Indian/Alaska Native 4 7, % 6, % % Native Hawaiian/Other Pacific Islander % % 0 0.0% 1 Abbreviated to white; 2 Hispanic; 3 black; 4 typically combined as Other in this document 5

12 Table 1.2: Connecticut population of Hispanic origin from the 2000 and 2010 Census, Connecticut 2000 census 2010 census Hispanic origin Number Percent of Hispanics Number Percent of Hispanics Change Percent difference Hispanic or Latino Total 320, % 479, % 158, % Puerto Rican 194, % 252, % 58, % Mexican 23, % 50, % 27, % Dominican Republic 9, % 26, % 16, % Cuban 7, % 9, % 2, % Central American: 12, % 35, % 22, % Guatemalan 5, % 16, % 11, % Honduran 1, % 6, % 4, % Salvadoran 1, % 6, % 5, % Costa Rican 1, % 2, % 1, % Nicaraguan % 1, % % Panamanian % 1, % % Other % % % South American: 31, % 71, % 40, % Ecuadorian 7, % 23, % 15, % Colombian 10, % 20, % 9, % Peruvian 6, % 16, % 9, % Argentinean 1, % 3, % 2, % Chilean 1, % 2, % 1, % Venezuelan 1, % 2, % 1, % Bolivian % % % Other 1, % % % Paraguayan % % % Other Hispanic/Latino: 41, % 33, % -7, % All other 33, % 24, % -9, % Spaniard 1, % 5, % 4, % Spanish 5, % 3, % -1, % Spanish American % % % 6

13 Table 1.3: Town 1 populations (n=169), Connecticut, US Census, 2010 Town Pop Town Pop Town Pop Bridgeport 144,229 Montville 19,571 Old Lyme 7,603 New Haven 129,779 Waterford 19,517 Middlebury 7,575 Hartford 124,775 Monroe 19,479 Easton 7,490 Stamford 122,643 Ansonia 19,249 Durham 7,388 Waterbury 110,366 East Lyme 19,159 Lebanon 7,308 Norwalk 85,603 Bethel 18,584 New Hartford 6,970 Danbury 80,893 Stonington 18,545 Westbrook 6,938 New Britain 73,206 Madison 18,269 Essex 6,683 West Hartford 63,268 Avon 18,098 Killingworth 6,525 Greenwich 61,171 Wilton 18,062 Marlborough 6,404 Hamden 60,960 Plainville 17,716 Beacon Falls 6,049 Meriden 60,868 Killingly 17,370 Willington 6,041 Bristol 60,477 Wolcott 16,680 Harwinton 5,642 Fairfield 59,404 Seymour 16,540 Bethany 5,563 Manchester 58,241 Brookfield 16,452 Columbia 5,485 West Haven 55,564 Colchester 16,068 North Stonington 5,297 Milford 52,759 Suffield 15,735 East Granby 5,148 Stratford 51,384 Ellington 15,602 Canterbury 5,132 East Hartford 51,252 Plainfield 15,405 Bolton 4,980 Middletown 47,648 Tolland 15,052 Preston 4,726 Wallingford 45,135 Ledyard 15,051 Deep River 4,629 Enfield 44,654 North Branford 14,407 Middlefield 4,425 Southington 43,069 Cromwell 14,005 Lisbon 4,338 Norwich 40,493 Orange 13,956 Ashford 4,317 Groton 40,115 New Fairfield 13,881 Pomfret 4,247 Shelton 39,559 Clinton 13,260 Salem 4,151 Torrington 36,383 East Hampton 12,959 Chester 3,994 Trumbull 36,018 Derby 12,902 Sterling 3,830 Glastonbury 34,427 Oxford 12,683 Barkhamsted 3,799 Naugatuck 31,862 Windsor Locks 12,498 Salisbury 3,741 Newington 30,562 Coventry 12,435 Bethlehem 3,607 Cheshire 29,261 Plymouth 12,243 Sherman 3,581 East Haven 29,257 Stafford 12,087 Washington 3,578 Vernon 29,179 Griswold 11,951 North Canaan 3,315 Windsor 29,044 Somers 11,444 Andover 3,303 New Milford 28,142 Granby 11,282 Sprague 2,984 Branford 28,026 Winchester 11,242 Kent 2,979 New London 27,620 East Windsor 11,162 Goshen 2,976 Newtown 27,560 Canton 10,292 Sharon 2,782 Wethersfield 26,668 Old Saybrook 10,242 Bozrah 2,627 Mansfield 26,543 Weston 10,179 Voluntown 2,603 Westport 26,391 Woodbury 9,975 Lyme 2,406 South Windsor 25,709 Hebron 9,686 Morris 2,388 Farmington 25,340 Putnam 9,584 Chaplin 2,305 Windham 25,268 Portland 9,508 Roxbury 2,262 Ridgefield 24,638 Thompson 9,458 Hartland 2,114 North Haven 24,093 Prospect 9,405 Franklin 1,922 Simsbury 23,511 Burlington 9,301 Hampton 1,863 Watertown 22,514 Redding 9,158 Eastford 1,749 Guilford 22,375 East Haddam 9,126 Bridgewater 1,727 Darien 20,732 Woodbridge 8,990 Scotland 1,726 Bloomfield 20,486 Litchfield 8,466 Norfolk 1,709 Southbury 19,904 Haddam 8,346 Colebrook 1,485 Berlin 19,866 Brooklyn 8,210 Warren 1,461 New Canaan 19,738 Woodstock 7,964 Cornwall 1,420 Rocky Hill 19,709 Thomaston 7,887 Canaan 1,234 Union These are the towns of residence for which HIV data are collected. 7

14 Section 2: HIV Surveillance In this section, Connecticut HIV surveillance data are provided in seven subsections: 2.1 HIV cases; 2.2 Characterizing recently diagnosed HIV cases; 2.3 HIV incidence in Connecticut and US; 2.4 Reason for testing in newly diagnosed HIV cases; 2.5 People living with HIV; 2.6 HIV deaths and hospitalizations; 2.7 CDC funded counseling and testing sites. AIDS was made reportable in In 2002, HIV in adults was made reportable. In 2006, laboratory results for HIV viral load tests were made reportable. In 2009, HIV genotype results were made reportable. 2.1 HIV infection cases 20,091 HIV cases have been reported (through December 2011) (Table 2.1.1). Among all HIV cases reported in Connecticut, 70% were male, 30% female; 36% white, 35% black, and 28% Hispanic; 2% less than 20 years of age at diagnosis, 15% were years of age, 69% years, 11% were 50-59, and 3% were 60 or more years of age at diagnosis; 43% had IDU as a probable source of infection, 23% MSM, 19% had heterosexual risk, and 2% were infected by transmission at birth. 9,506 (47%) have died and 10,585 are living with HIV (prevalent cases) (Figure 2.1.1). Table 2.1.1: Total HIV infection cases by sex, race, and risk/mode of transmission, Connecticut, Risk IDU MSM MSM/IDU Hetero Pedi Oth/unk Total % of row % of row % of row % of row % of row % of row % of N total N total N total N total N total N total N total Total 8, , , , , Sex Male 6, , , , , Female 2, , , Race White 2, , , Black 3, , , Hispanic 2, , , Other Diagnosis age , , , , , , , , , ,

15 Figure 2.1.1: Cases of HIV disease: diagnosed, deaths, and prevalent cases, Connecticut, ,000 12, ,082 9,419 9,600 9,806 9,991 10,103 10,205 10,401 10,585 10,000 8, ,000 Number of cases ,000 4, , Year 0 Deaths* Diagnosed Prevalent *Deaths in the most recent year are preliminary Notes: The number of deaths slowly declined during the 2000 s even as the number of prevalent cases (PLWH) increased steadily. In 2002, 322 deaths were reported (4% of PLWH). In 2011, 164 deaths were reported (2% of PLWH). Historically, deaths have been reported by DPH Vital Records. However, beginning in 2008, additional deaths have been detected through use of national death registries that include deaths in cases that moved out-of-state. Furthermore, CDC has increased the frequency with which states de-duplicate cases that may be reported in more than one state. These new surveillance activities have increased the accuracy of the PLWH number. Over the past five years the number of PLWH has increased by 594 (6%). 9

16 2.2 Characterizing recently diagnosed HIV cases HIV cases diagnosed in 2011 As of December 31, 2012, 348 HIV cases were diagnosed in % were white (4.0 per 100,000), 38.8% black (37.4 per 100,000), 29% Hispanic (20.4 per 100,000), and 3% were other races. 74% were male (14.7 per 100,000) and 26% were female (5.0 per 100,000). As shown in Table 2.2.1, using a multiple imputation statistical method to allocate cases with missing risk into existing categories, 53% were MSM, 32% heterosexual and 14% were IDU. This statistical method uses SAS programs provided by the CDC which can be applied to statewide data only. Although they may eventually be able to be used on smaller geographic areas (cities, Ryan White Care areas) and population subsets, currently they can only be used on statewide data. PLWH data are also adjusted using this method in a subsequent section. Based on this adjusted risk assessment, since 2007, IDU as a mode of transmission has decreased 70% while MSM has continued to increase with a 16% percent change. Table 2.2.1: HIV cases diagnosed in 2011 by risk and race, Connecticut, 2011 White Black Hispanic Asian Hawaiian/ Pacific Islander Multiple race Risk 1 N % N % N % N % N % N % N % MSM IDU MSM/IDU Heterosexual Perinatal Other/unknown Total Risk adjusted for cases with missing risk using multiple imputation. Numbers in columns don t always add to totals due to weighted methods. Total HIV cases diagnosed during ,915 HIV cases were diagnosed during (Table 2.2.2). o 31% white, 38% black, 29% Hispanic, and 3% other races. o 72% male, 28% female. o 3% less than 20 years of age, 23% 20-29, 53% 30-49, 20% 50+. o 35% MSM, 13% IDU, 1% MSM/IDU, 19% heterosexual, 0.3% perinatal, 32% other/unknown. 10

17 The geographic distribution of cases diagnosed during in selected cities is shown in Figure and Table o Over one-third of all cases (36%) were from the three largest cities, Hartford, Bridgeport, and New Haven. Of the cases residing in these cities, blacks continue to have the highest diagnosis rate ranging from 42% in Hartford to 59% in New Haven. o Over the five-year period, approximately, 86% of cases reside in the cities listed in Table and 265 (14%) cases were from medium to small cities with fewer than 10 cases per city. o HIV cases have been reported in almost all Connecticut towns but most cases and the highest rates are in the urban centers. The number of cases diagnosed in by town ranges from o In Figure 2.2.1, the towns shown in cream had no diagnosed cases during that were reported by the end of o Waterbury, New Haven, Bridgeport and Hartford all had more than 100 cases diagnosed and reported during (43% of all cases diagnosed in the time period) Figure 2.2.1: HIV cases diagnosed, Connecticut, Number of HIV cases >100 State of Connecticut Department of Public Health HIV Surveillance Miles Total reported HIV/AIDS cases diagnosed, : 1,915 Range of HIV cases per town: Town of residence based on first report of HIV Data supplied by HIV Surveillance Program 11

18 12 Table 2.2.2: HIV cases diagnosed during by city of residence, sex, race/ethnicity, and risk, Connecticut, 2011 Sex Race/ethnicity Risk group Residence at Total Male Female White Black Hisp Other IDU MSM M/I Het Pedi O/u diagnosis N % % % % % % % % % % % % % Total 1, Hartford Bridgeport New Haven Waterbury Stamford New Britain Hamden Norwalk Danbury Meriden East Hartford West Haven Manchester New London Norwich Middletown Stratford Bristol East Haven Milford Greenwich Windsor Bloomfield Ansonia Groton Wallingford West Hartford Windham Fairfield Torrington Enfield Shelton other towns Risk groups: IDU - injection drug use; MSM - men who have sex with men; M/I - MSM and IDU; Het - heterosexual contact; Pedi - perinatal transmission from mother at birth; O/u - other and unknown.

19 Table 2.2.3: HIV diagnosis among adult and adolescent Hispanics, by risk and place of birth, Connecticut, Central America 1 Dominican Republic Mexico Puerto Rico South America United States Total Risk N % N % N % N % N % N % N 2 % MSM IDU MSM/IDU Heterosexual Other/Unknown Total Includes Central American countries and the Caribbean Islands excluding Cuba and Dominican Republic 2 Cases include persons whose place of birth is not among those listed and persons whose place of birth is unknown (n=189). 3 Includes hemophilia, blood transfusion, perinatal exposure, and risk factor not reported or not identified. 13

20 HIV and AIDS status of recently diagnosed cases A significant percentage of cases continue to have AIDS at their initial diagnosis with HIV infection. These cases are referred to as late testers. As shown in Table 2.2.4, in % of cases had AIDS at their initial diagnosis. Approximately 43% of cases transitioned to AIDS since their 2011 diagnosis. Typically, transition to AIDS is detected by reporting of low CD4 laboratory test results (<200 or <14% CD4+ cells per microliter). Table 2.2.4: 2011 HIV cases meeting the AIDS case definition during 12 months after initial diagnosis with HIV infection. Diagnosed with HIV in 2011 AIDS at 0-30 days % AIDS at 1-12 months % Total AIDS by 12 months % HIV (not AIDS) at 12 months % Total Sex Male Female Race White Black Hispanic Other Age < Risk MSM IDU-Males IDU-Females MSM and IDU Hetero 1 - Males Hetero 1 - Females O/u 2 - Males O/u 2 - Females heterosexual contact 2 other and unknown 14

21 Figure 2.2.2: HIV cases by percentage that were AIDS at diagnosis, transitioned to AIDS, or continue to be HIV, Connecticut, % 90% 80% 70% 60% 50% 40% 30% 20% 10% HIV at diagnosis and continue to be HIV HIV at diagnosis but transitioned to AIDS AIDS at diagnosis (late testers) 0% Figure 2.2.3: Late testing for HIV: HIV cases diagnosed in 2011 meeting criteria for AIDS by 12 months after initial diagnosis with HIV infection, Connecticut, 2011 Number of diagnosed HIV cases by town Region* Hartford TGA New Haven EMA Number of late testers by grant area *Ryan White Funding Regions Hartford Transiontal Grant Area New Haven Eligible Metropolitan Area Total HIV cases diagnosed in 2011 = 348 Range of late testers per town = Number of HIV cases meeting AIDS criteria by 12 months of initial HIV diagnosis no HIV cases reported <5 10+ State of Connecticut Department of Public Health HIV Surveillance Miles no AIDS cases reported 5-9 Region* 15

22 Trends in HIV cases by SEX Males continue to constitute the majority of HIV cases diagnosed in Connecticut with 74% of cases in Figure 2.2.3: Rate per 100,000 of HIV by sex and year of diagnosis, Connecticut, Rate Female Male Year Diagnosed Figure 2.2.4: Rate per 100,000 person years of HIV cases by sex, Connecticut, Rate Female Sex Male 16

23 Trends in HIV cases by RACE/ETHNICITY Blacks are disproportionately diagnosed with HIV at a rate 9 times whites and Hispanics at a rate 5 times whites (Figure 2.2.7). Overall, the number of cases has decreased over the time period shown but the lowest decrease is seen in black cases, with only a 5% decrease from 2007 to Other race includes cases categorized with more multiple races as well as Asians and other races with very small numbers. Figure 2.2.6: Rate per 100,000 of diagnosed HIV by race/ethnicity, Connecticut, Rate Year Diagnosed Black Hispanic White other Figure 2.2.7: HIV Diagnosis per 100,000 person years by race ethnicity, Connecticut, Rate per 100,000 person years Black Hispanic White Other Race/Ethnicity 17

24 Trends in HIV cases by AGE GROUP Over the past five years, the number of cases diagnosed in has seen a 31% increase while all other age group have seen a decrease in numbers from 2007 to 2011 (range of decrease amongst age groups: 14% - 33%). Figure 2.2.8: Number of cases diagnosed with HIV by age group, Connecticut, Number < Year Diagnosed Figure 2.2.9: Rate per 100,000 of cases diagnosed with HIV by age group, Connecticut, Rate < Year Diagnosed 18

25 Trends in HIV cases by RISK GROUP During the most significant change has been the decrease in the number of cases with IDU risk and the continued increase in MSM. The decrease in IDU numbers has meant that the other risk categories have become more prominent. The current profile of HIV in Connecticut is showing increased numbers in MSM transmission than in previous years with regard to newly diagnosed cases. Rate of HIV in MSM: To calculate a rate, the number of cases (numerator) and the size of the population (denominator) must be known. For some groups, such as MSM and IDU, the size of the population has not been known and therefore rates have not been provided. However, CDC has recently released an estimate that 4% of men 13+ years of age are MSM. Using this percentage with Connecticut population estimates suggests that 58,000 men are MSM. With 186 MSM infections in 2011, there was a rate of 321 HIV infections per 100,000 MSM in Connecticut: (186/57,000) x 100,000. This could also be expressed as 3 per 1,000 MSM. Figure : HIV cases by adjusted risk group and year of diagnosis, Connecticut, Number Year Diagnosed Note: Risk groups adjusted for cases reported with unknown risk using multiple imputation MSM IDU MSM/IDU Hetero Perinatal 19

26 The trend in the recently diagnosed youth has demonstrated a continuous rise in MSM being diagnosed with HIV while IDU risk has remained relatively low and flat. Although the total number of cases in youth is small, MSM has become a prominent mode of transmission. Of the 278 youth diagnosed with HIV between 2007 and 2011, 61% of year olds had a risk factor of MSM. Of the MSM youth diagnosed with HIV, 44% were black, 29% were white and 25% were Hispanic. Figure : HIV cases in youth, years of age, by risk and year of diagnosis, Connecticut, Number MSM IDU MSM/IDU Hetero Pedi Oth/Unk Year Diagnosed 2.3 HIV incidence in the US and Connecticut HIV incidence surveillance was implemented in the US and Connecticut in HIV incidence reflects the leading edge of HIV transmission, infection trends, and the impact of prevention efforts. An HIV Surveillance Report released by the CDC in 2012 included national trend data ( ) that showed the estimated number of new infections in the United States to be stable at 47,500 per year. National Incidence Data, 2008 to 2010: o The estimated number of new HIV infections remained stable across all age groups and was highest among individuals aged o Blacks continue to be disproportionately affected by HIV infection accounting for 44% of new infections. o The estimated number of new HIV infections decreased 21% among females from 12,000 in 2008 to 9,500 in o The estimated number of new HIV infections among MSM increased 12% from 26,700 in 2008 to 29,800 in 2010 with a 22% increase among MSM aged

27 years. HIV infections among females with infection attributed to heterosexual contact decreased. o Notably, the estimated number of new HIV infections was greatest among young black MSM in the youngest age group (13 24 years). Young black MSM accounted for 55% of new HIV infections among young MSM overall. o Comparing incidence estimates for 2008 and 2010, the number of new HIV infections among young MSM increased significantly overall. The Connecticut estimate indicated that 496 people were newly infected with HIV in 2010, but with a wide confidence interval due to small numbers (Figures 2.3). As with the US estimate, there were specific groups at higher risk for HIV infection. Men had twice the risk of women and the risk for blacks was six times higher than in whites. References to articles about the national and Connecticut incidence estimate are found in the introduction. Figure 2.3: HIV incidence estimates, United States and Connecticut, United States 80 Connecticut Rate per 100,000* Total Male Female White Black Hispanic *Rates per 100,000 in persons 13 years of age 21

28 Table 2.3: Estimate of HIV incidence by sex, race/ethnicity, age and risk, Connecticut, 2010 Incidence estimate Rate 95% C.I. (Lower) 95% C.I. (Upper) Total Sex Male Female Race/ethnicity White Black Hispanic/Other Age at Infection Risk group MSM HET/IDU/OTH Heterosexual contact/idu/other 2.4 Reason for testing in newly diagnosed HIV cases As part of the HIV incidence surveillance system described in the previous section, the confidential case report form used to collect information about new HIV cases was modified in order to add questions about HIV testing history. Included was a question about the reason(s) for testing. Information about test history has been collected for 1,352 (93%) of the 1,460 newly diagnosed HIV cases that were eligible to be enrolled in the HIV incidence system between 2008 through Table shows the reasons HIV-positive patients were tested. Patients could report more than one reason for testing. During , 368 (27%) cases were tested because they had symptoms that prompted their provider to order HIV testing. In addition, 258 (19%) were tested because they were just checking and 232 (17%) were tested as a result of exposure ( worried that in the past 6 months they might have been exposed to HIV ). There were also many and varied reasons for testing that were mentioned on less than 10% of responses including 4% who were tested at an STD clinic or currently had an STD, TB, or viral hepatitis, 3% as part of prenatal care and various required testing settings (entry into military, etc). 22

29 Also shown is a trend in the number of cases that may have been tested as a part of routine or regular testing. This data is combined from the MD recommended, regular tester, routine testing, just checking, and screening options on the form. In 2011, 51% of cases enrolled were tested because of one of these reasons. However, being tested due to symptoms was the reason most often selected in all four years with no evident trend. Table 2.4.1: Reason for testing in HIV cases eligible for inclusion in the HIV incidence surveillance system, Connecticut, Total N % N % N % N % N % Incidence eligible cases 1, Cases with Test History (TH) 1, Reasons for HIV testing Symptom Just checking Exposed MD recommend Routine testing Regular Tester STD or viral hepatitis Screening Prenatal screening Other reason Total reasons given 1, No reason given for testing Routine testing: (MD recommended, regular tester, routine testing, just checking, screening) 23

30 2.5 People living with HIV (PLWH) (Prevalence) As of December 2011, there were 10,585 PLWH in Connecticut (Table 2.5.1). CDC estimates that, nationally, in addition to PLWH that are aware of their status, there are an additional 18.1% of PLWH who are not aware of their HIV-positive status. In Connecticut, this unaware population is estimated to be 2,339 people giving a total of 12,924 PLWH in Connecticut (Table 2.5.2). Of 10,585 reported PLWH, 66% are male and 34% are female (Table 2.5.1). Approximately one-third are white (33%), black (32%) and Hispanic (32%). The risk associated with HIV infection is known in 85% of cases. When cases with unknown risk are statistically adjusted into known categories, 40% are associated with IDU risk, 28% with MSM and 27% with heterosexual risk. Table shows the cross-tabulation of unadjusted risk with demographic characteristics. Only 7% of PLWH are currently less than 30 years of age and 13% are The majority of cases are (33%) and (34%) years of age (Table 2.5.1). Reflecting the aging of the PLWH population, 13% (n = 1,412) of cases are 60 or more years of age. Table shows 28 cities with 50 or more cases of PLWH. Seventeen cities have over 100 cases each and account for 79% of all PLWH. Three cities, Hartford, New Haven, and Bridgeport, have over 1,000 cases each and account for 45% of all PLWH. In Windham, over 50% of PLWH are IDU. Notably, MSM is highest in several smaller cities: Wallingford (48%), Milford (48%), West Hartford (48%), and Greenwich (46%). Importantly, 1,438 or 14.0% of all PLWH live in smaller cities with fewer than 50 cases. The statewide distribution of HIV is also shown using maps. Figure shows the distribution by number and rates of cases in each city. Cities with rates over 300 per 100,000: Hartford, New Haven, Bridgeport, New London, Waterbury, New Britain, Windham, Stamford, East Hartford, Norwalk, Meriden, Middletown, and East Haven. Figure shows a comparison of the prevalence in race/ethnicity-sex groups by age group per 100,000 population. The highest prevalence is in black (4,059 per 100,000) and Hispanic (3,444/100,000) males in the age group. The highest white male prevalence is in the and age groups at approximately 430/100,000. White female prevalence is low in all age groups but highest in the age group (162/100,000). Using these prevalence rates risk can be compared between groups. For example there is a 9-fold higher risk of HIV infection in black males in the age group compared to white males (4,059/453=9). The error bars indicate the 95% confidence intervals. Additional PLWH tables specific for male, female, black, Hispanic, white, MSM, IDU, heterosexual, age groups, cities and counties can be found on the HIV/AIDS surveillance webpage ( 24

31 Table 2.5.1: PLWH by risk group, sex, race/ethnicity and current age, Connecticut, Risk 25 N IDU MSM MSM/IDU Hetero Pedi Oth/unk % of row total N % of row total N % of row total Total 3, , , , , Sex Male 2, , , Female 1, , , Race White , , Black 1, , Hispanic 1, , Other Current age < , , , , , , , N % of row total N % of row total N % of row total N Total % of total

32 Table 2.5.2: Statewide estimate 1 of the population unaware of their HIV infection and demographic distribution, Connecticut, 2011 Diagnosed PLWH PLWH plus unaware 3 Distribution of unaware 4 Total 1, % 10,585 12,924 2, % Male 1, % 1, % Female % % White % % Black % % Hispanic % % Multi-race % % Asian % % IDU % % MSM % % MSM/IDU % % Hetero % % Pedi 6 0.3% 7 0.3% Unknown % % % 6 0.3% % % % % % % % % % % 1 This estimate is based on the CDC estimate of the percentage of persons with HIV infection unaware of their HIV positive status (HIV Surveillance Supplemental Report 2012; 17(No.3, part A). The limitations of this approach include: a) the national estimate may not be applicable to local jurisdictions; b) not all cases diagnosed in have been reported as of December 31, 2012; c) among recently diagnosed cases the number reported without a presumed source of infection is higher than cases diagnosed several years ago due to the lag in reporting of this information; and, the PLW number includes some cases who have died but for whom the death has not been reported and cases that were previously diagnosed in other states but have not yet been de-duplicated. 2 Connecticut HIV/AIDS Surveillance Program data as of December 31, % of people infected with HIV are unaware of their status. 4 The demographic and behavioral risk distributions are based on the distribution of recently diagnosed cases ( ). Erratum: 1/8/2014- table updated due to incorrect number of cases diagnosed for

33 27 Table 2.5.3: PLWH by city of residence at diagnosis, sex, race/ethnicity, and risk, Connecticut, 2011 Sex Race/ethnicity Risk Total Male Female White Black Hisp Other IDU % MSM MSM/IDU Hetero Pedi Oth/unk Residence N % % % % % % % % % % % % % Hartford 1, New Haven 1, Bridgeport 1, Waterbury Stamford New Britain Norwalk Danbury East Hartford Meriden West Haven New London Hamden Middletown Norwich Windham Manchester Stratford East Haven Bristol Bloomfield West Hartford Milford Greenwich Wallingford Torrington Groton Fairfield All other towns 1, Total 10,

34 Figure 2.5.1: People living with HIV by town, Connecticut, 2011 Rate per 100,000 people, 2010 census. *PLWHA=people living with HIV/AIDS Total PLWHA as of 2011: 10,585 Range of PLWHA per town: 0-1,946 State of Connecticut Department of Public Health HIV Surveillance Rate of PLWHA per town < > Miles Number of PLWHA* per town < ,000 >1,000 People living with HIV by sex, race, risk Figure 2.5.2: Prevalence rate per 100,000 of HIV by race-sex groups and age, Connecticut, 2011 Rate 5,000 4,500 4,000 3,500 3,000 2,500 2,000 1,500 1, Age group black males black females Hispanic males Hispanic females white males white females 28

35 HIV infection is disproportionately found in males. Although 49% of the Connecticut population is male, 66% of PLWH are male. Thirty-four percent of cases are female. Therefore, the risk of HIV infection in males is 1.9 times higher than for females. Although the overall male/female ratio is 66%/34%, it differs in some important subgroups as follows: Black 61/39 MSM 100/0 White 75/25 <30 71/29 Hispanic 63/ /38 IDU 66/ /30 Hetero risk 33/67 Figure 2.5.3: HIV is disproportionate in men, Connecticut, 2011 Connecticut Population People living with HIV 51.3% 48.7% males 33.7% females 66.3% HIV is also disproportionate by race/ethnicity. Although 9% of the population is black, they constitute 32% of PLWH. Similarly, Hispanics, making up 13% of the population, are 32% of PLWH. On the other hand, white and other race groups with 71% and 6% of the population constitute 33% and 3% of PLWH, respectively. Figure 2.5.4: Rate of people living with HIV by race/ethnicity, Connecticut, Rate Black Hispanic White Other Race/Ethnicity 29

36 As the graphs on this page illustrate, different subgroups defined by sex and race/ethnicity have very different risk profiles (MSM, IDU, heterosexual sex). MALE PLWH. While black and Hispanic males are predominantly in the IDU risk group, White males are predominantly MSM. Overall, approximately 14% of male cases have unknown risk. Figure 2.5.5: Probable sources of HIV infection in PLWH, by race/ethnicity, Connecticut MALES 70 IDU 60 56% MSM 48% 50 40% MSM/IDU % 24% Hetero 20% 18% 20 15% 11% 13% 14% Pedi 10 6% 3% 2% 3% 2% 3% 1% Oth/Unk 0 Black Hispanic White percent n=2,077 n=2,157 n=2,616 FEMALE PLWH. Black, Hispanic, and white women are all predominantly in the IDU and heterosexual categories. Although, black and Hispanic women have higher rates of heterosexual risk compared to white women who have higher rates of IDU. Figure 2.5.6: Probable sources of HIV infection in PLWH, by race/ethnicity, Connecticut 2011 percent % 46% 20% 35% FEMALES 48% 3% 3% 14% 43% 39% Black Hispanic White n=1,339 n=1,265 n=866 1% 17% IDU Hetero Pedi Oth/Unk 30

37 Trends in PLWH by risk and race/ethnicity Figure shows the trend in PLWH by risk group. During this time cases were removed due to death and other cases were added as newly diagnosed. During , the net number of PLWH increased by 594 cases from 9,991 at the end of 2007 to 10,585 at the end of 2011 (based on preliminary 2011 death data). PLWH with IDU risk decreased by 241 cases over this time period (-5% change). However, both heterosexual and MSM risk groups had net increases of 299 and 530 cases, respectively (12%, 22% change). Figure 2.5.7: PLWH by adjusted risk group and year, Connecticut, ,000 4,500 4,000 Number 3,500 3,000 2,500 2,000 1,500 1, Year Diagnosed MSM IDU MSM/IDU Hetero Perinatal Oth/Unk Over the time periods, there was a 9% increase in the number of black people living with HIV compared to a 4% increase in Hispanics and whites. Figure 2.5.8: PLWH by race/ethnicity and year, Connecticut, ,000 3,500 3,000 Number 2,500 2,000 1,500 1, Year Hispanic Black White other 31

38 Aging among PLWH Advances in HIV treatment continue to have positive consequences for PLWH. Life spans have been extended considerably for many infected people depending on treatment compliance and other factors. The aging of the PLWH population means people with HIV infection will develop the chronic diseases inherent in any aging population. Some of these conditions will be exacerbated by their HIV infection or its treatment. Age distributions of PLWH in each of the risk groups are shown in Figure As the age distribution of people within risk groups broadens there will be implications for HIV care and prevention, drug rehabilitation, mental health services and other services. Figure 2.5.9: Probable source of HIV infection in PLWH by current age, Connecticut, 2011 Percent IDU MSM MSM/IDU Hetero Pedi Oth/Unk n=3,692 n=2,527 n=200 n=2,371 n=189 n=1,606 As an example of how the PLWH population has aged, Figure shows the current age distribution of PLWH that were originally diagnosed when they were in the age group (who were still alive at the end of 2011). Of the 3,917 people originally diagnosed with HIV infection while in the age group, only 12% are still in that age group. Almost half (45%) are in the age group, 39% are in the age group, and 4% are in the age group. Figure : Current age distribution of PLWH who were diagnosed at year of age, Connecticut, 2011 (n = 3,917) 2,000 1,778 (45%) 1,533 (39%) Number 1,800 1,600 1,400 1,200 1, (12%) (4%) Age group

39 PLWH, recently diagnosed and entry into care Implementation of HIV viral load reporting in 2006 has had important implications for monitoring of HIV/AIDS in Connecticut. In addition to using VL to detect and register cases not previously reported, it can also be used as a marker for entry into care. Figure shows the percentage of PLWH who were diagnosed with HIV through 2010 who were alive in 2011 and who had a viral load test in Overall 67% of PLWH had at least one viral load test in Higher percentages were seen in certain subgroups: heterosexuals (n=1,703, 70%), PLWH of other races (n=225, 82%), and females (n=2,556, 72%). Figure : Percentage of PLWH currently residing in Connecticut, diagnosed through 2010, and living in 2011, who received a viral load test during % Percent 80 72% 69% 65% 63% 66% 69% 68% 69% 70 63% 65% 66% 67% 67% 70% 67% Figure and Figure show percentage of cases diagnosed in 2010 who were at least 13 years of age, diagnosed in 2010 and linked to care within 3, 6, and 12 months of their diagnosis. Within 3 months, 86% of people diagnosed in 2010 had at least 1 viral load test and 93% by 12 months. Figure : Percentage of adolescents and adults diagnosed in 2010 and linked to care within 12 months of their HIV infection diagnosis by race/ethnicity, Connecticut, 2011 Percent w/in 3 months of dx w/in 6 months of dx w/in 12 months of dx 96.3% 94.2% 94.8% 90.9% 89.6% 86.7% 85.7% 83.7% 82.7% 88.9% 75 Black Hispanic White Other n=154 n= 98 n= 135 n= 9 Race/ethnicity 33

40 Figure : Percentage of adolescents and adults diagnosed in 2010 and linked to care, within 12 months of their HIV infection diagnosis by probable source of infection, Connecticut, 2011 Percent w/in 3 months of dx w/in 6 months of dx w/in 12 months of dx 92.6% 96.6% 88.6% 89.1% 91.3% 100% 84.0% 92.6% 90.4% 83.3% 88.2% 86.3% MSM IDU MSM/IDU Hetero Oth/unk n=149 n=46 n=5 n=94 n=102 Risk 2.6 HIV deaths and hospitalizations Deaths There are three sources of data available concerning deaths in persons with HIV infection. o The HIV surveillance system collects information about deaths in HIV-infected people including the cause of death. o The Vital Records Section at DPH collects information about all deaths and includes primary and contributing causes. Vital Records reports deaths due to HIV to the HIV Surveillance Program. The Program also periodically matches the HIV registry against the Vital Records Death registry to identify deaths in persons with HIV from other causes. o CDC periodically sends national death data that can be matched against the HIV registry. This method detects some of the deaths that occur out-of-state. Since 1981, 20,191 HIV cases have been reported and of these, 9,506 (47.1%) are known to have died. The number of deaths during has averaged 266 each year with a range of HIV infection is still an important cause of death in Connecticut. As shown in Table 2.6.1, the age adjusted mortality rate of HIV, as a primary cause of death, was 1.2 per 100,000 for whites, 17.2 for blacks and 9.7 for Hispanics. This means that the age-adjusted mortality rate in black males in was almost 15 times higher than in whites. The mortality rate in Hispanics was 8 times higher than in whites. In whites, blacks and Hispanics the rate of death in males was more than twice as high as in females. 34

41 Table 2.6.1: HIV as primary cause of death 1 by race and sex, Connecticut, No. of Deaths Both Sexes Male Female Crude Rate 2 AAMR 3 No. of Deaths Crude Rate AAMR No. of Deaths Crude Rate AAMR White Black Hispanic Explanation of terms: 2 Rates per 100,000 population. 3 AAMR Age adjusted mortality rate. HIV has become a chronic disease and many HIV infected people live for extended periods of time. With longer lives, PLWH develop other illnesses or develop illnesses exacerbated by HIV. The implications for cause of death statistics are that PLWH will die of causes unrelated to HIV or will have death certificates completed that do not reflect HIV as a cause of death. Figure shows the trend in the number of deaths with HIV as a cause of death compared to all deaths in persons with HIV infection. Cause of death is not reported with many cases whose deaths are reported by out-of-state sources. Figure 2.6.1: Trend in deaths among HIV infected people, Connecticut, HIV/AIDS primary cause of death^ All causes of death* Number Year of death ^HIV/AIDS listed as the primary cause on the death certificate (B20-B24, mortality data) *Death from any cause (HIV registry) Table shows that 8% of people diagnosed in died within 36 months of their HIV diagnosis and that 39% and 27% of all deaths between 2004 and 2011 for people diagnosed with HIV during were in people aged and at diagnosis. 35

42 Table 2.6.2: Survival time for HIV cases diagnosed , Connecticut, months 13 and 24 months 25 and 36 months >36 months Total deaths 1 Survival through 2011 Total cases 36 No. of Deaths % of row No. of Deaths % of row No. of Deaths % of row No. of Deaths % of row No. of Deaths % of row No. alive Total , ,433 Sex Male , ,658 Female Race White Black Hispanic Other Age at diagnosis < Risk IDU MSM MSM/IDU Heterosexual Pediatric Other/Unknown mortality data is preliminary % of row N

43 Table 2.6.3: Age-Adjusted mortality rates for HIV as the underlying cause of death, Connecticut, Both Sexes Males Females No. of Crude AAMR Sig. AAMR No. of Crude AAMR Sig. AAMR No. of Crude AAMR Sig. AAMR deaths Rate Level deaths Rate Level deaths Rate Level AAMR is significantly different from AAMR at p<0.01. Note: The crude mortality rate and age-adjusted rates are calculated using NCHS' bridged-race (ASRH) post-censal population estimates for Connecticut. The original vintage of the population datasets by age, sex, race, and Hispanic origin (ASRH) was used for each year, except as noted as noted here: 2010 estimates were vintage

44 Hospitalizations In 2010, there were 335,167 total hospitalizations for all causes in Connecticut hospitals not including those related to pregnancy and birth, with total charges of over 11.2 billion dollars ( #47732). Table shows the number of hospitalizations with HIV (042, V08) listed as the first discharge code. Importantly, these numbers refer to hospitalization events, not to individuals. The same individual can be represented in more than one hospitalization. In 2010, there were 452 hospitalizations (12.2/100,000 population) where HIV was the first discharge code. The median length of stay in the hospital was 6 days and the median charge was $32,576. The total cost of the 452 hospitalizations was $28,085,529. Reflecting the disproportionate impact of HIV on black and Hispanic Connecticut residents, these groups have a much higher risk of HIV hospitalization. As shown in Table 2.6.3, the HIV hospitalization rate of black patients was 55.5 per 100,000 compared with 29.1 for Hispanic and 4.2 for white patients. These data are for hospital discharges and individual patients can have multiple discharges during the year. Table 2.6.3: Hospitalizations by age and race/ethnicity, Connecticut, 2010 White Black Hispanic N 1 Rate 2 N Rate No Rate Total Numbers of discharges represent events, not unique persons hospitalized. HIV/AIDS (042, V08) discharge based on International Classification of Diseases. First listed code. 2 Rates are expressed as number of discharges per 100,000 population. 38

45 39 Table 2.6.4: HIV hospitalizations, Connecticut residents, 2010 Total Male Female Age group Number Median 3 discharges 1 Rate 2 stay Median charges Number discharges Rate Median stay Median charges Number discharges Rate Median stay Median charges , , , , , , , , , ,217 aa aa ,964 a a ,248 Total , , ,749 1 Numbers of discharges represent events, not unique persons hospitalized. HIV/AIDS (042,V08) discharge based on International Classification of Diseases. First listed code. 2 Rates are expressed as discharges per 100,000 population. 3 Median is a statistical term meaning that half of the total is above this value and half is below. 4 The total does not add because data is suppressed. A dash (-) represents the quantity zero. In keeping with confidentiality regulations, numbers are suppressed when less than 6, and marked "aa" when 6 or greater, but suppressed to preserve the censoring of an adjacent cell.

46 2.7 DPH funded(state and federal) - HIV Testing in Connecticut Since 1986, the DPH has funded HIV counseling and testing sites throughout Connecticut. DPH supports two different types of CDC-funded HIV testing components. The first HIV testing component is Counseling, Testing and Referral (CTR), which targets specific high risk populations at non-healthcare sites. The second HIV testing component is Expanded Testing Initiative (ETI), which routinely tests all individuals during their visit to a funded HIV testing site (the individual has the option to opt-out of the HIV test). The objectives of the HIV testing are to: o Identify newly HIV diagnosed positives; o Provide newly HIV diagnosed positives with their test result; o Identify previously diagnosed HIV positives who fell-out of care; o Refer and link all HIV diagnosed positives to HIV medical care; o Refer and link all HIV diagnosed positives to Partner Services (PS); o Refer and link all HIV diagnosed positives to HIV Prevention Services; o Refer and link all pregnant HIV diagnosed positive females to prenatal care; o Provide all HIV diagnosed people with information and tools in order to reduce HIV risk behaviors. HIV testing data was collected using EvaluationWeb (XPEMS) and data measures were used to monitor the extent to which these objectives were achieved. The DPH HIV Prevention unit provides training and continuing education options to DPH funded HIV testing staff to ensure quality HIV prevention services; HIV counseling and testing data for 2011 (Table 2.7.1) In 2011, 25,690 HIV tests were conducted and 63 (0.25%) were confirmed newly diagnosed positive and 19 (0.07%) were previously diagnosed. In 2011, 17,322 (67%) of CDC-funded HIV testing clients were male, 8,481 (33%) white, 8,421(33%) black and 7,909 (31%) Hispanic. The majority of clients were classified as high-risk heterosexuals and having an unknown risk factor (88%). Other client risks included IDU (8%), MSM (4%), and MSM/IDU (0.08%). Of the 63 newly HIV diagnosed positives in 2011, 50 (79%) were male, 11 (18%) white, 27 (43%) black and 25 (40%) Hispanic. The risk category of the newly HIV diagnosed positives included: 37 (59%) MSM, 19 (30%) high risk heterosexual and 7 (11%) IDU. The 63 newly diagnosed seropositivity rate by risk category were: 4% MSM, 0.15% high risk heterosexual and 0.36% IDU. Connecticut s CDC funded-hiv testing statistics from prior years can be requested from the DPH HIV Prevention Unit. 40

47 Table 2.7.1: HIV Testing at CTR and ETI Sites, Connecticut, 2011 Number of Number of Number of Newly CTR Number of CTR and ETI newly previously diagnosed clients ETI clients columns diagnosed diagnosed seropositivity Characteristics HIV test HIV test total positives positives rate 1 Sex Male 11,412 5,910 17, Female 3,604 4,737 8, Transgender -FTM Transgender -MTF Race White 4,781 3,700 8, Black 4,827 3,594 8, Hispanic 4,995 2,914 7, Asian AI/AN Native Hawaiian/ PI More than one race Don t know /Declined Age group Under , , ,621 3,765 9, ,707 2,315 6, ,943 1,984 4, ,207 1,304 2, and over Unknown Risk High Risk Heterosexual 12, , IDU 1, , MSM , MSM/IDU Unknown 19 10,081 10, Total 15,037 10,653 25, Number of newly HIV diagnosed positives divided by the number of CTR and ETI Columns total 2 American Indian/Alaskan Native 3 Native Hawaiian/Pacific Islanders 41

48 Section 3: Ryan White Grant Areas Connecticut has two Ryan White care areas (Part A), the New Haven EMA (eligible metropolitan area) and the Hartford TGA (transitional grant area) with populations as shown below. The New Haven EMA comprises almost half of the state s population and together the TGA and EMA cover 84% of the population. o New Haven EMA 1,779, % o Hartford TGA 1,212, % o Other counties 582, % o Connecticut total 3,574, % The Hartford TGA is composed of Hartford, Middlesex, and Tolland Counties. The New Haven EMA is composed of New Haven and Fairfield Counties (Figure 3.1). Of the 20,091 cumulative HIV cases reported in Connecticut, 18,325 (91%) were residents of one of the two Ryan White areas. Of 10,585 PLWH in Connecticut at the end of 2011, 9,638 (91%) lived in one of the Ryan White areas. Additional data tables for the Hartford TGA and New Haven EMA (trends in HIV case reporting and PLWH) can be found on the DPH web site ( Figure 3.1: Ryan White Grant Areas, Connecticut, 2011 Litchfield Hartford Tolland Windham New Haven Middlesex New London Fairfield 42

49 Hartford TGA PLWH: There are 3,623 PLWH in the Hartford TGA (299 per 100,000), 34% of PLWH in Connecticut. As shown in Table 3.1, 39% are IDU, 23% MSM, 20% heterosexual exposure, 40% Hispanic, 28% black, and 31% white). In comparison with the New Haven EMA, the Hartford TGA has a smaller overall population 43 Table 3.1: RYAN WHTE: Hartford TGA: PLWH by race/ethnicity, sex, current age, and risk group, Connecticut, 2011 N Risk IDU MSM MSM/IDU Hetero Pedi Oth/unk % of row N % of row N % of row Total 1, , Sex Male , Female , Race/ethnicity White , Black , Hispanic , Other Current age , , N % of row N % of row N % of row N Total % of total 43

50 New Haven EMA PLWH: There are 6,048 PLWH in the New Haven EMA counties (340 per 100,000), 57% of PLWH in Connecticut. As shown in Table 3.2, 33% are IDU, 24% MSM, 24% heterosexual exposure, 29% Hispanic, 37% black, and 31% white. 44 Table 3.2: RYAN WHITE: New Haven EMA: PLWH by race/ethnicity, sex, current age, and risk group, Connecticut, 2011 N Risk IDU MSM MSM/IDU Hetero Pedi Oth/unk % of % of % of % of % of % of row row row row row row total N total N total N total N total N total Total 1, , , , Sex Male 1, , , Female , Race/ethnicity White , Black , Hispanic , Other Current age , , N Total % of total 44

51 Trend in AIDS cases: This data is important to Ryan White areas because HRSA categorizes Ryan White areas into funding categories (EMA, TGA) based on the number of AIDS cases reported in the most recent five year period at the time the designation is being made. During the most recent five-year period, , 559 AIDS cases were diagnosed in the Hartford TGA (Table 3.3). During the most recent five-year period, , 850 AIDS cases were reported in the New Haven EMA (Table 3.3). Table 3.3: Trend in the five-year total of AIDS cases in the Hartford TGA and New Haven EMA, Connecticut, Hartford TGA New Haven EMA Year reported AIDS cases 5 year total Year reported AIDS cases 5 year total , , , , , , , , , , , , , , , , , , , , , , , , Figure 3.2: Trend in five year total of reported AIDS cases in the Hartford and New Haven Ryan White service areas, Connecticut, Hartford TGA New Haven EMA Number Year reported 45

52 Population unaware of their HIV infection: Using the CDC estimate of 18.1%, an additional 798 people are living in the Hartford TGA who are not aware that they are infected with HIV (Table 3.4). These, plus the 3,610 who are aware, means 4,408 people are estimated to have HIV infection in the Hartford TGA. Table 3.4: Hartford TGA estimate 1 of the population unaware of their HIV infection and demographic distribution, Connecticut, 2011 Diagnosed PLWH PLWH plus unaware 3 Distribution of unaware Total % 3,610 4, % Male % % Female % % White % % Black % % Hispanic % % Multi-race 9 1.3% % Asian 8 1.2% % IDU % % MSM % % MSM/IDU % % Hetero % % Pedi 2 0.3% 2 0.3% Unknown % % % 2 0.3% % % % % % % % % % % 1 This estimate is based on the CDC estimate of the percentage of persons with HIV infection unaware of their HIV positive status (HIV Surveillance Supplemental Report 2012; 17(No.3, part A). The limitations of this approach include: a) the national estimate may not be applicable to local jurisdictions; b) not all cases diagnosed in have been reported as of December 31, 2012; c) among recently diagnosed cases the number reported without a presumed source of infection is higher than cases diagnosed several years ago due to the lag in reporting of this information; and, the PLW number includes some cases who have died but for whom the death has not been reported and cases that were previously diagnosed in other states but have not yet been de-duplicated. 2 Connecticut HIV Surveillance Program data as of December 31, % of people infected with HIV are unaware of their status. 4 The demographic and behavioral risk distributions are based on the distribution of recently diagnosed cases ( ). 46

53 Using the CDC estimate of 18.1%, an additional 1,337 people are living in the New Haven EMA who are not aware that they are infected with HIV (Table 3.5). These, plus the 6,048 who are aware, means 7,385 people are estimated to have HIV infection in the New Haven EMA. Table 3.5: New Haven EMA estimate 1 of the population unaware of their HIV infection and demographic distribution, Connecticut, 2011 Diagnosed PLWH PLWH plus unaware 3 Distribution of unaware 4 Total 1, % 6,048 7,385 1, % Male % % Female % % White % % Black % % Hispanic % % Multi-race % % Asian % % IDU % % MSM % % MSM/IDU % % Hetero % % Pedi 3 0.3% 4 0.3% Unknown % % % 3 0.2% % % % % % % % % % % 1 This estimate is based on the CDC estimate of the percentage of persons with HIV infection unaware of their HIV positive status (HIV Surveillance Supplemental Report 2012; 17(No.3, part A). The limitations of this approach include: a) the national estimate may not be applicable to local jurisdictions; b) not all cases diagnosed in have been reported as of December 31, 2012; c) among recently diagnosed cases the number reported without a presumed source of infection is higher than cases diagnosed several years ago due to the lag in reporting of this information; and, the PLW number includes some cases who have died but for whom the death has not been reported and cases that were previously diagnosed in other states but have not yet been de-duplicated. 2 Connecticut HIV Surveillance Program data as of December 31, % of people infected with HIV are unaware of their status. 4 The demographic and behavioral risk distributions are based on the distribution of recently diagnosed cases ( ). 47

54 Section 4: Behavioral Risk Most cases of HIV in Connecticut can be attributed to the sexual or drug-using behaviors of individuals. For this reason information about these behaviors that are available for Connecticut residents is included in the Epidemiologic Profile. School Health Survey ( ) This survey is conducted in consenting schools with high school students, grades Questions are included about sexual and drug use activity. A complete report of findings is available on the DPH website ( Behavioral Risk Factor Surveillance System (BRFSS) (2011) The BRFSS is an ongoing telephone survey (land lines and cell phones) of the general population of adults conducted in all 50 states and coordinated by the Centers for Disease Control and Prevention (CDC) in Atlanta, GA. Households are randomly selected and contacted by a contractor who conducts most interviews in the evenings and on weekends. Once an interviewer reaches a household, a random selection of adult household members is made to choose one person to participate in the survey. The questionnaire changes somewhat from year-to-year and state-to-state to meet changing needs and address state-specific priorities. The BRFSS originally collected data on health behaviors related to the leading causes of death, but has since been expanded to include issues related to health care access, utilization of preventive health services, and to address emerging issues. Each month survey data are sent to the CDC for editing and checking. At the end of each year data are compiled and adjusted to be representative of all adults in the state. The data is then returned to states for analysis and use in planning and monitoring health programs. Additional information is available at the DPH website ( ). BRFSS changed the sampling strategy in 2011 to include calls to cell phone numbers. This change in methods improves the representativeness of the data but makes comparisons with earlier years less valid. 48

55 HIV testing Have you ever been HIV tested? Of 4,251 respondents in the 2011 survey aged years, 44% (adjusted) indicated that they had been tested for HIV (Table 4.1). o Sex: Females (48%) were more likely to have been tested than males (39%). o Race/ethnicity: Among race/ethnicity groups, blacks (64%) and Hispanics (54%) were much more likely to report being tested than whites (39%). o Age group: Over half of respondents in the and age groups were tested (59% and 57%). In the younger age group, 18-24, 40% had been tested. After age 44, the percentage tested trended lower with 38% in the age group and only 25% in the age group. o Education: The lowest levels in testing were in high school graduates (38%). Those with less than a high school degree had the highest level of testing at 53% but the small number in that group resulted in a wide confidence interval (44%- 61%). o Income: Lower income (<$15,000 annually) was associated with more testing at 54% compared to 41% of those with $75,000+ annual income. When were you tested? Of the 1,817 respondents who said they had been tested for HIV, 1,598 (88%) gave a usable answer to the question about when the test occurred. Overall, 15% indicated it was in 2011, the same year as the survey. 47% said between one and four years ago and 38% indicated they were tested more than four years ago (Table 4.2). In summary, 57% of the respondents had not been HIV tested and an additional 17% had not been tested in five or more years. High-risk situations BRFSS defined high-risk situations as one or more of the following events occurring in the past year: IDU, treatment for STD, received money or drugs in exchange for sex, or had anal sex without a condom. Participants who answered don t know or refused were excluded from the analysis. Overall, 4% (adjusted) of participants (n=136) admitted having a high-risk situation in the previous year (Table 4.3). o Sex: 5% of males, 4% of females. o Race/ethnicity: 7% of Hispanics, 6% of blacks, and 4% of whites. o Age group: 11% of the age group, 1% of the age group. o Education: 8% of less than high school, 3% of college graduates. o Income: 6% of respondents with a lower income (<$25,000) had higher levels of risk than 3% of respondents with higher income ($50,000+). 49

56 Table 4.1: BRFSS, Telephone Survey of Adults Age 18-64, Connecticut, , 2, 3 Have you ever been tested for HIV? (N=4,251) Characteristic Yes N % C.I. (95%) Total 1, Male Female 1, White 1, Black Hispanic Other < H.S H.S. or G.E.D Some post-h.s College grad <$15, $15,000-24, $25,000-34, $35,000-49, $50,000-74, $75, Does not include tests as part of a blood donation but does include oral fluid testing. 2 Denominator excludes: Respondents with do not know, refused, or missing responses. 3 C.I. (95%) = Confidence Interval (at 95 percent probability level). Percentages are weighted to population characteristics. 50

57 Table 4.2: BRFSS, Telephone Survey of Adults Aged 18-64, Connecticut, 2011 When were you tested for HIV? 1, 2 51 (N=1,598) Respondent number 1990 and before Characteristic Total N % C.I. (95%) N % C.I. (95%) N % C.I. (95%) N % C.I. (95%) N % C.I. (95%) N % C.I. (95%) Total 1, Male Female 1, White 1, Black Hispanic Other < H.S H.S. or G.E.D Some post-h.s College grad <$15, $15,000-24, $25,000-34, $35,000-49, $50,000-74, $75, Denominator excludes: Respondents with do not know, refused, or missing responses; aged 65 or older; or, did not report having been tested for HIV. C.I. (95%) = Confidence Interval (at 95 percent probability level). Percentages are weighted to population characteristics.

58 Table 4.3: BRFSS, telephone survey of adults aged 18-64, Connecticut, 2011 Percentage of respondents with high-risk 1, 2, 3 situations (N=4,346) Characteristic Yes N % C.I. (95%) Total Male Female White Black Hispanic Other < H.S H.S. or G.E.D Some post-h.s College grad < $15, $15,000-24, $25,000-34, $35,000-49, $50,000-74, $75, Intravenous drugs, treated for STD, given or received money in exchange for sex, anal sex without a condom. 2 Denominator excludes: Respondents with do not know, refused, or missing responses. 3 C.I. (95%) = Confidence Interval (at 95 percent probability level). Percentages are weighted to population characteristics. 52

59 Section 5: Sexually Transmitted Diseases Surveillance In this section Connecticut surveillance data are provided for chlamydia, gonorrhea, and syphilis from STD*MIS. Surveillance for these diseases is conducted using reports from laboratories and providers similar to methods described for HIV Table 5.1 shows the distribution of chlamydia, gonorrhea and syphilis by county and Table 5.2 by towns with a combined total of 100 or more cases. Table 5.3 show the distribution of STD cases by age group. Figure 5.1 compares the age distributions of STDs and HIV. Advantages of STD data: a) Unlike HIV infection, these diseases are often immediately symptomatic leading to prompt testing and diagnosis; b) It is recommended that all women <25 years of age receive annual screening for chlamydia and gonorrhea; c) STDs are a marker for recent high-risk sexual behavior; d) Interviews in the context of partner notification are conducted with all syphilis cases and have established MSM as an emerging risk factor. Disadvantages of STD data: a) Gonorrhea and chlamydia race/ethnicity information is incomplete in about one-third of reports; b) Few interviews are conducted with gonorrhea and chlamydia cases due to the high number of cases reported. Table 5.1: Chlamydia, gonorrhea, and syphilis by county, Connecticut 2011 Disease Chlamydia Gonorrhea Syphilis County at diagnosis N Rate 1 N Rate 1 N Rate 1 Fairfield 2, Hartford 4, Litchfield Middlesex New Haven 4, New London Tolland Windham Unknown Total 13, , Rates per 100,000 population. Rates based on counts <20 may be unstable and should be interpreted with caution. 53

60 Table 5.2: Chlamydia, gonorrhea, and syphilis by town, Connecticut, 2011 Total Chlamydia Gonorrhea Syphilis N % N N N Hartford 2, % 1, New Haven 1, % 1, Bridgeport 1, % 1, Waterbury 1, % New Britain % East Hartford % Stamford % Meriden % West Haven % Hamden % Danbury % Manchester % Norwalk % Middletown % Bloomfield % Norwich % Windsor % Stratford % Windham % New London % West Hartford % Bristol % Vernon % East Haven % Enfield % other towns 2, % 2, Total 1 16, % 13,664 2, Total includes towns in which town of residence at diagnosis was unknown. 54

61 Table 5.3: Chlamydia, gonorrhea, and syphilis by age group, Connecticut, 2011 Chlamydia Gonorrhea Syphilis Age group N Rate 1 N Rate 1 N Rate 1 < ,198 1, ,503 2, , Total 13, , Rates = per 100,000 population. Rates based on counts <20 may be unstable and should be interpreted with caution. Figure 5.1: Comparing the age distribution of gonorrhea and chlamydia, syphilis, and HIV, Connecticut, % 55.3% 50.0% 44.3% Percent 40.0% 30.0% 20.0% 30.6% 34.8% 32.8% 19.5% 18.2% 39.4% 10.0% 7.6% 3.4% 9.9% 4.3% 0.0% < Age group Gonorrhea/chlamydia Syphilis HIV 55

62 5.1 Gonorrhea The trend in gonorrhea cases for is shown in Table by sex and race. During , 12,700 cases were reported and fluctuated between 2,332 and 2,793 with no trend. Overall, 42% were male and 58% female. In 2011, blacks were reported with gonorrhea at a rate of 317 per 100,000 compared to Hispanics at 67/100,000 and whites at 11/100,000. Please note in 28% of cases race/ethnicity was unknown. Black males and females in the age-group were disproportionally reported at rates of 1,156/100,000 and 1,451/100,000 respectively compared to whites and Hispanics of that age (Table 5.1.2). In 2011, over half (61%) of reported cases in blacks, whites, and Hispanics were in people under 25 years of age, with 35.3% in the age group (Table 5.1.2). Table 5.1.1: Rate per 100,000 of gonorrhea cases by sex and race/ethnicity, Connecticut, Sex Race/ethnicity Year Total 1 Male Female White Black Hispanic AI/AN 2 Asian/PI 3 N N Rate N Rate N Rate N Rate N Rate N Rate N Rate , , , ,793 1, , , ,558 1, , , ,568 1, , , ,449 1, , , Includes people of other/unknown races, (n=3,115) 2 American Indian/Alaskan Native 3 Asian/Native Hawaiian/Pacific Islanders 56

63 Table 5.1.2: Rate per 100,000 of gonorrhea cases by age group and select race/ethnicity/sex, Connecticut, 2011 Race/ethnicity/sex White males White females Black males Black females Hispanic males Hispanic females Age Rate Rate Rate Rate Rate Rate < , ,156 1, Total

64 5.2 Chlamydia The trend in chlamydia cases for is shown in Table by sex and race. During , 62,460 cases of chlamydia were reported with 11,019-13,664 cases reported each year (Table 5.2.1). In 2011, with 13,164 reported, there was an average of 36 cases reported every day. Overall, 73% of cases were female and 27% male. In 2011, as with gonorrhea, blacks were disproportionally reported with chlamydia at a rate of 1,213 per 100,000 compared to 422/100,000 for Hispanics and 92/100,000 for whites (Table 5.2.1). Importantly, in 35% of cases race/ethnicity was unknown. By race/ethnicity and sex groups, black females aged and had the highest rate of chlamydia with 7,959 and 7,531 per 100,000 respectively. (Table 5.2.2). In 2011, 73% of black, white, and Hispanic cases were less than 25 years of age, with 41% of cases in the age-group. Table 5.2.1: Rate per 100,000 of chlamydia cases by sex and race/ethnicity, Connecticut, Sex Race/ethnicity Year Total 1 Male Female White Black Hispanic AI/AN 2 Asian/PI 3 N N Rate N Rate N Rate N Rate N Rate N Rate N Rate ,510 2, , , ,015 1,186 2, ,449 3, , , ,280 1,250 2, ,144 3, , , ,348 1,256 1, ,693 3, , , ,298 1,201 2, ,664 3, , , ,382 1,213 2, Includes people of other/unknown races, (n=20,977) 2 American Indian/Alaskan Native 3 Asian/Native Hawaiian/Pacific Islanders 58

65 Table 5.2.2: Rate per 100,000 of gonorrhea cases by age group and select race/ethnicity/sex, Connecticut, 2011 Race/ethnicity/sex White males White females Black males Black females Hispanic males Hispanic females Age Rate Rate Rate Rate Rate Rate < ,074 7, , ,216 3,653 7, , ,677 2, , , Total , Matching Chlamydia and Gonorrhea with the HIV registry Chlamydia and gonorrhea cases diagnosed during were matched against 10,585 people living with HIV through 2011 identified from the HIV registry. During , 62,535 chlamydia cases were diagnosed on 49,214 individuals and 12,913 gonorrhea cases were diagnosed on 11,061 individuals. The matching was performed using Link Plus software with a cut off value of 10. Each case was reviewed for probability based on last name, first name, date of birth, sex and race. For chlamydia, there were 275 matched cases on 229 distinct individuals (2% of PLWH). Three individuals had 4 infections, 4 individuals had 3 infections and 29 individuals had 2 infections. One hundred and ninety-nine of the chlamydia infections were diagnosed after diagnosis of HIV, 12 were diagnosed simultaneously, and 60 were diagnosed prior to HIV diagnosis. For gonorrhea, there were 256 matched cases on 209 distinct individuals (2% of PLWH). One individual had 5 infections, 4 individuals had 4 infections, 3 individuals had 3 infections and 25 had 2 infections. One hundred and sixty-three gonorrhea infections were diagnosed after diagnosis of HIV, 12 were diagnosed simultaneously and 81 were diagnosed prior to HIV diagnosis. 59

66 Table 5.3.1: PLWH diagnosed with Chlamydia or Gonorrhea, Connecticut, Sexually transmitted disease Chlamydia Gonorrhea Total N % N % N % Total Sex Male Female Race White Black Hispanic Other Age at co-infection HIV Risk MSM IDU - Males IDU - Females MSM and IDU Heterosexual contact - Males Heterosexual contact - Females Other/unknown - Males Other/unknown - Females Syphilis The number of primary and secondary (infectious) syphilis cases in Connecticut declined from 1,139 in 1990 to 12 in Since 2001 there has been an emergence of syphilis both nationally and in Connecticut, primarily in MSM (Figure 5.4.1). During , cases were reported. Overall, 96% were male and 4% female. In 2011, 39% of the cases were in white males, 29% in black males, and 24% in Hispanic males. Unlike chlamydia and gonorrhea, syphilis is not predominant in a particular age group, in 2011 cases ranged from 5% in the age group to 24% in the 45+ age group 60

67 Table 5.4.1: Primary and secondary syphilis cases by sex and race/ethnicity, Connecticut, Sex Race/ethnicity Male Female White Black Hispanic Asian/PI 2 Total 1 Year N N Rate N Rate N Rate N Rate N Rate N Rate Includes people of other/unknown races, (n=3) 2 Asian/Native Hawaiian/Pacific Islanders Table 5.4.2: Rate per 100,000 of Primary and secondary syphilis cases reported by age group and select race/ethnicity/sex, Connecticut, 2011 Race/ethnicity/sex White males White females Black males Black females Hispanic males Hispanic females Age Rate Rate Rate Rate Rate Rate < Total

68 Syphilis and HIV in MSM Although information about cases of primary and secondary syphilis are presented, an additional 57 early latent cases of syphilis were also reported to DPH during Combined, 123 syphilis cases were reported (primary, secondary, and early latent). Of special concern, 29% of primary and secondary syphilis cases were HIV positive; MSM accounted for 71% of primary and secondary syphilis cases reported. The most common risk factor reported by MSM was meeting sex partners on the internet and anonymous sex. DPH STD Program staff attempt to interview all syphilis cases (described in Connecticut Epidemiologist article, ( Included in the interview are questions about risk behavior and number of sex partners (who then receive partner services). Since 2001, syphilis cases have been predominantly in MSM. Figure shows the trend in male syphilis cases by MSM and HIV status. The percentage of male syphilis cases that were MSM increased from 2% in 1995 to 96% in Since 2002, the percentage of male cases with known MSM risk has ranged from 79% to 89%. HIV testing is offered to all syphilis cases. Figure 5.4.1: Number of MALE primary and secondary syphilis cases with MSM risk and HIV positive status, Connecticut, Number Year of report Males without MSM risk MSM HIV pos MSM not known HIV pos 62

69 Partner Services During , 71% of partners were located. Of the located partners, 13% were tested and determined to be HIV positive (Table 5.4.3). Table 5.5.1: Partner services conducted by STD DIS for PLWH referred for follow-up 1, Connecticut, N % Total interviews % IDU only 1 0.2% IDU and sexual % Heterosexual % Homosexual % Bisexual % Unknown % Partners initiated % Partners per contact index case 0.8 Partners located and tested % HIV positive % HIV negative % Partners located and NOT tested % Previous HIV positive % Located refused testing % Previous HIV negative NOT tested % Unable to locate % Out of state referral (results unknown) % Other % Summary HIV status of all partners initiated % HIV positive (new and previous) % HIV negative % Unknown % 1 Referrals for follow-up come from a variety of providers and STD clinics. 63

70 During 2011, partner services were attempted for 139 HIV positive clients with a success rate of 94%. Of the 107 male cases interviewed, 72% were MSM. Interviews and testing of sex partners of index clients resulted in a 15% rate of newly diagnosed HIV positives. Table 5.5.2: Partner services conducted by STD DIS for PLWH referred for follow-up 1, Connecticut, 2011 N % HIV+ clients for whom Partner Services were attempted 139 Completed interviews (94.2%) % Male % MSM % Heterosexual % Female % Number of partners disclosed 643 Range per case 1-50 Completed interview risk factors Sexual contact with: Male % Female % Male and female % Anonymous partner % Known IDU 7 5.3% Sex while intoxicated or high % Sex for drugs or money % Female with MSM 0 0.0% Been incarcerated % Injection drug use % IDU or non-idu drug use % Sex partners of index clients Partners that were initiated 108 Partners that were interviewed (67.6%) % Previous HIV positives % Previous negatives NEW HIV positives % No previous test NEW HIV positives 2 2.7% Previous negative still negative % No previous test new negative 4 5.5% Total HIV positive % 1 Referrals for follow-up come from a variety of providers and STD clinics. 64

71 Section 6: Hepatitis C Hepatitis C surveillance information is included in the HIV Epidemiologic Profile because it has modes of transmission in common with HIV. Injection drug use is a major contributor to the transmission of both HCV and HIV in Connecticut. Consequently, many people with HIV infection are co-infected with hepatitis C (HCV). Hepatitis A and B: Surveillance information about hepatitis A and B can be found at the DPH web site ( Hepatitis C surveillance methods in Connecticut There are several tests for hepatitis C: antibody, nucleic acid testing (NAT), and genotype. A person who is positive for hepatitis C may be acutely or chronically infected or may have been infected in the past and is no longer infected (resolved). They may also be false positive. Additional laboratory tests are recommended to confirm a positive antibody result. Currently, the CDC testing recommendations specifies antibody testing and if the result is positive follow with a NAT. Both antibody and the confirmatory tests are laboratory reportable to DPH. Current CDC testing guidelines can be found at the link following link: Acute Hepatitis C Unlike hepatitis A and B, there is no laboratory test for acute HCV infection. Only physicians can diagnose acute HCV infections and approximately 80% of new infections are asymptomatic. As a result the number of acute HCV cases reported is only a fraction of new infections making accurate estimates of incidence difficult. According to the CDC, 850 acute hepatitis cases were reported in the U.S. in Figure 6.1.1: Reported number of acute hepatitis C cases, United States, ,500 3,000 Number of cases 2,500 2,000 1,500 1, Year Source: National NotifiableDiseases Surveillance System (NNDSS) 65

72 During , 177 acute cases of HCV were reported (Table 6.1.1). Of these, females were infected at a rate of 1.1 per 100,000 person years and males at a rate of 0.9. Hispanics had the highest rate at 1.9 per 100,000 person years followed by whites at 1.0 and blacks at 0.4. Connecticut is seeing a high rate of young IDU being infected with HCV. People aged and were infected at a rate of 2.9 and 2.3 per 100,000 person years respectively. The risk factor predominantly associated with acute HCV infection in Connecticut is IDU or other drug use with potential blood exposure. Sixtyseven percent of cases were IDU/street drugs with very small percentages in all other risk and behavioral categories about which data was collected. Table 6.1.1: Ranked risk factors for acute hepatitis C by sex, race/ethnicity and age group, Total % N column Risk factors 1 IDU 2 / Sex contact/ Household street drugs MSM contact % % % N row N row N row >1 sex None/ partners Other 3 unknown Total Sex Male Female Race White Black Hispanic Oth/Unk Age group < The presence of a risk factor does not necessarily indicate the cause of disease. Risk factors are mutually exclusive. Risk factors are ranked in a hierarchy reflecting the high risk associated with IDU followed by sexual contact followed by other risks. 2 IDU = injection drug use; Street drugs = non-injection drugs not prescribed by a physician. 3 Other includes infusions, hospitalization, surgery, contact with a HCV positive person other than household or sexual contact, body piercing, dental work, other blood exposure, tattoo N % row N % row N % row 66

73 6.2 Chronic Hepatitis C It is estimated that 1.6% of US residents have been infected with HCV and that 3.2 million are chronically infected. Applying these percentages to Connecticut suggests that approximately 57,000 residents of Connecticut have been infected with HCV (estimated rate: 1,595 per 100,000). HCV infection becomes chronic in 75-85% of acutely infected individuals. However, because the majority of cases cannot be confirmed as chronic, surveillance is conducted for past/present HCV cases. These cases are defined by confirmed antibody positive test results. During , 10,953 confirmed HCV cases were reported to DPH with an average of 2,200 cases reported each year. Table shows the distribution and trend in towns with more than a total of 100 cases during Also see Figure Among the confirmed past/present cases for which enhanced follow-up was conducted (Table 6.2.2), 36% were female and 64% male. Race/ethnicity was reported in 90% of cases with 55% white, 12% black, and 21% Hispanic. Cases tended to be middle aged and higher with 26% and 43% 50 years of age or older. Risk factors for potential source of infection were reported in 75% of cases (Table 6.2.2). Risk factors can be difficult to assess because the time of infection cannot always be determined. History of IDU or street drugs (55%) was the predominant risk. The Connecticut profile of hepatitis C risk is consistent with national data. 67

74 Table 6.2.1: Hepatitis C, past or present, 1 by town of residence, Connecticut, Year Reported Total Town of residence 2, 3 N N N N N N % Total 2,550 2,468 2,140 1,909 1,886 10, % Corrections % Facility % Unknown % Hartford % Bridgeport % New Haven % Waterbury % New Britain % Meriden % Bristol % Norwich % West Haven % Middletown % New London % Stamford % Windham % East Hartford % Danbury % Torrington % Norwalk % Manchester % Stratford % Milford % Hamden % East Haven % Wallingford % Enfield % Groton % Other towns , % 1 Past or present case is laboratory confirmed 4 and does not meet the case definition for acute hepatitis C. 2 Town of residence at first report of hepatitis C. 3 Corrections or facility indicates residence at time of report. 4 Laboratory confirmed is anti-hcv positive with a signal to cut-off ratio predictive of a true positive as determined for the particular assay or verified by a more specific test (RIBA, PCR, genotype). 68

75 Figure 6.2.1: Hepatitis C, past or present, Connecticut, Number reported by town North Canaan Salisbury Colebrook Hartland Suffield Somers Norfolk Stafford Union Enfield Granby Woodstock Canaan Thompson East Granby Barkhamsted Winchester Windsor Locks Ellington East Windsor Putnam Willington Ashford Eastford Simsbury Windsor Tolland Pomfret Sharon Canton Cornwall Goshen New Hartford Torrington Bloomfield South WindsorVernon Killingly Avon Mansfield Chaplin Coventry Hampton Brooklyn Manchester Harwinton Burlington West Hartford Hartford Bolton East Hartford Litchfield Kent Warren Farmington Andover Wethersfield Windham Canterbury Plainfield Sterling Morris Glastonbury Bristol Newington Columbia Scotland Washington ThomastonPlymouth PlainvilleNew Britain Rocky Hill Hebron Bethlehem Marlborough Lebanon Sprague Watertown New Milford Berlin Wolcott Southington Cromwell Franklin Lisbon Sherman Portland Griswold Voluntown Woodbury East Hampton Roxbury Colchester Waterbury Middletown Norwich Meriden Bozrah Bridgewater Middlebury Cheshire Middlefield Preston Prospect New Fairfield North Stonington Naugatuck Salem Southbury East Haddam Brookfield Haddam Montville Wallingford Durham Ledyard Oxford Beacon Falls Danbury Newtown Bethany Chester Hamden Lyme Waterford Seymour North Haven Killingworth Stonington Bethel North Branford Deep River East Lyme Woodbridge Groton Essex New London Monroe Ansonia Madison Derby Guilford Old Lyme Ridgefield Redding Shelton New Haven ClintonWestbrookOld Saybrook East HavenBranford Orange Easton West Haven Trumbull Weston Milford Wilton Stratford Number of past or present cases: Fairfield Bridgeport Number of cases geocoded: New Canaan Range of cases geocoded per town: Westport Stamford Town of residence at first report. Norwalk State of Connecticut Department of Public Health Viral Hepatitis Surveillance Greenwich Darien Miles Hepatitis C, past or present: a case with a postive anti-hcv result with a signal to cut-off predictive of a true postitive as determined for the particular assay or confirmed with a more specific test (e.g. RIBA, PCR, genotype).

76 70 Table 6.2.2: Hepatitis C, past or present, with enhanced surveillance follow-up 1 : sex, race/ethnicity, and age group by risk 2, Connecticut, Blood Medical/ IDU/street Sex Foreign Household Long-term MSM Total products/ dental Other 4 Unknown drugs contact born contact hemodialysis ever transplant field N % column total N % row total N % row total N % row total N % row total Follow-up received 7, , , Sex Female 2, , Male 4, , , Race White 4, , , Black Hispanic 1, , Asian/PI Other Unknown Age group < , , , , , , During 2007, follow-up forms were sent to ordering clinicians of cases in Fairfield, Hartford, and New Haven counties. Since 2008, follow-up forms have been sent on all newly reported cases. Response rate, 78%. 2 Risk factors are mutually exclusive. The presence of a risk factor does not necessarily indicate the cause of disease. 3 IDU = injection drug use; Street drugs = non-injection drugs not prescribed by a physician. 4 Other includes risks such as tattoo, piercing, incarceration, sex with a high risk partner, multiple sex partners, other blood exposure N % row total N % row total N % row total N % row total N % row total N % row total

77 Appendix 1. HIV Surveillance Methods Compared to prior Epidemiological Profiles, most Connecticut tables and graphs herein combine HIV and AIDS into HIV disease or simply, HIV. The initial year of diagnosis indicates the year first diagnosed with HIV infection regardless of HIV or AIDS status at the time of the diagnosis. Uses of surveillance information: The primary purpose of the Connecticut Department of Public Health (DPH) HIV Surveillance Program is to systematically collect, analyze, interpret, and disseminate information about HIV trends in Connecticut. This information is used by a variety of state and federal agencies to develop policies and allocate funding for local prevention and care needs. Surveillance information is also used by media, local health departments, non-governmental organizations and agencies, hospitals, physicians, students, and others. Other important functions of the surveillance system at the state and national level include monitoring national HIV strategy goals, estimating incidence of HIV infection, identifying cases of public health importance, and monitoring genetic variants and drug-resistant strains. Reportable diseases: Connecticut law requires DPH to maintain lists of reportable diseases and reportable laboratory findings. The lists include approximately 60 diseases and conditions of public health importance. Information is collected about each person with a disease or condition on the list. Reports are made by the physician who diagnoses the disease and the laboratory that performs the test associated with the disease. HIV surveillance: AIDS has been on the list of reportable diseases since the early 1980s. HIV (not AIDS) was added to the reportable disease list in HIV viral load test results were made reportable in 2006 and HIV genotype sequence was made reportable in HIV is reported when an individual is confirmed HIV positive by Western Blot or other confirmatory test, including viral load. Subsequent reports are made with additional testing with viral load or low CD4, or when the person meets the criteria for AIDS. The AIDS case definition consists of either HIV positive with a low CD4-positive cell count (below 200 cells/microliter or less than 14% of total lymphocytes), or HIV positive and a diagnosis with one of several opportunistic infections or conditions (for example, Pneumocystis carinii pneumonia, wasting, or cervical carcinoma). DPH maintains a computerized registry of HIV cases (ehars). Persons testing anonymously at one of Connecticut s HIV counseling and testing sites are not reported initially although will be when they receive subsequent testing as part of their HIV care. Stage of disease: The current HIV case definition includes criteria for staging at the time of initial diagnosis. HIV cases may be HIV (non AIDS) or HIV Stage 1 (CD4 >500), HIV Stage 2 (CD ), or HIV Stage 3 (AIDS) (CD4 <200). Connecticut does not require reporting of all CD4 test results (only low CD4 or less than 200) and is therefore unable to report information about HIV Stage 2 disease. A case will be classified by the highest Stage they attain at any time. Cases will not be reclassified at lower stages if their clinical condition improves. Information collected about HIV cases: Various demographic and medical information is collected about each HIV case including: laboratory test dates, sex, race, town of 71

78 residence, exposure category, AIDS indicator diseases, treatment status, pregnancy status, vital status, country of birth, and provider information. Additional information about some of these data elements is below. Year of report and diagnosis: HIV cases may be diagnosed in years prior to the year in which they were reported. The year of report is based on the date that the case was first reported to the Department of Public Health. The year of diagnosis is based on the earliest date in ehars which is indicative of confirmed HIV infection. Most surveillance reports use the year of diagnosis. Annual surveillance reports are based on cases diagnosed up through December 31 of a specified year allowing at least 12 months for more complete reporting of newly diagnosed cases. Sex: For each case of HIV, information is collected about Sex at Birth as well as enhanced information about gender ( Current Gender Identity ). Options include Male, Female, Transgender Male-to-Female, Transgender Female-to-Male, and Additional Gender Identity. Very few cases are reported with other than male or female sex. There are never cases with unknown sex. If a case is reported without sex, follow-up is conducted to obtain it. Race/ethnicity: For each HIV case, race and ethnicity information is collected. Race categories include: White, Black, Asian, Native Hawaiian or other Pacific Islander, and American Indian/Alaska Native. Ethnicity is coded as Hispanic or Not Hispanic and entered into a separate variable from race. Cases can be of more than one race. Black is used as shorthand to save space for the more complete description used by the US Census, Black or African American and Hispanic is used as shorthand for Hispanic or Latino. The majority of HIV cases are reported as white, black, or Hispanic but very small numbers of other race categories are also reported and categorized as Other in HIV tables unless specific analyses are conducted. Also, Multirace can be reported and is included in Other unless specifically included in analysis. Race and ethnicity are collected in separate fields and can be analyzed separately but because most Hispanic cases are Hispanic-white or Hispanic with no race reported, any case reported as Hispanic will be in the Hispanic category regardless of race. There are never cases with unknown race/ethnicity. If a case is reported without race or ethnicity, follow-up is conducted to obtain it. Residence: The city of residence in HIV tables refers to the city where the case resided at the time of their initial diagnosis. With ongoing laboratory reporting of CD4 and viral load, more recent addresses can be reported and are included in ehars. Due to incomplete reporting of current address due to the significant percentage of cases that are not currently in care and not receiving routine testing, current address is not included in HIV surveillance reports. There are never cases with unknown initial city of residence. If a case is reported without city, follow-up is conducted to obtain it. Age: Information about age is presented in two ways, age at diagnosis and current age of PLWH. Current age refers to age at the time the data was created for analysis, typically December 31 of the specified year. Cases 0-13 years of age are considered children and cases 13 are considered adults and adolescents. Upper age group categories have been added as the number of cases in those age groups increases. There are never cases with unknown age. If a case is reported without age, follow-up is conducted to obtain it. 72

79 Country of birth: Information about country of birth is collected but poorly reported. This information is not always available to providers. An analysis of country of birth was previously provided (QuickStat, June 10, 2009) and shows that for the majority of cases where country of birth was known, US was reported followed by Puerto Rico and then smaller percentages for Haiti and Jamaica and many others. For 31% of cases, country of birth was not reported. Of the cases where country of birth was reported, only 8% are other than US and Puerto Rico. Exposure categories: For each case of HIV, information is collected about the most likely way in which the person acquired HIV infection. This information may not always be available, especially for recently reported cases. The provider may not have reported the information, or the patient may not have volunteered the information to the provider, may not have returned to the diagnosing provider, may not be in care, may have moved to another state, or may have died. When the exposure category is unknown, HIV tables and graphs classify these cases in a separate category, Oth/unk. Over time, after additional follow-up with providers, many of these cases will be reclassified into one of the known exposure categories. Essentially all HIV cases are found to fall into one of the known risk categories when it is possible to make a complete risk assessment. In the HIV surveillance system, HIV cases are only counted once in a hierarchy of exposure categories. Persons with more than one risk category are classified in the exposure category listed first in the hierarchy, except for men with both a history of sexual contact with other men and injecting drug use. They are in a separate category. o Men who have sex with men (MSM) Males who report having sexual contact with males (homosexual contact) and males who report sexual contact with both males and females (bisexual contact). o Injection drug use (IDU) Persons who have injected non-prescription drugs. o Heterosexual contact Persons who have had heterosexual contact with a person with HIV infection or who is at high risk of HIV infection (IDU, bisexual male). o Other Other exposure categories include received clotting factor or hemophilia/coagulation disorder, transfusion recipient, transplant recipient, and worker in a health care or clinical laboratory setting. Due to low numbers, these cases are classified together as Oth/unk in HIV tables and graphs. Opportunistic infections: There are 26 opportunistic infections or conditions (not all are infections) that, together with HIV infection, indicate development of AIDS (or HIV Stage 3). These are also referred to as AIDS indicator diseases. Many of these diseases result from impaired immunity. Having one of these diseases does not necessarily indicate that the person has HIV infection. The HIV surveillance system collects information on the disease(s) that are reported with the initial diagnosis of AIDS. Indicator diseases that are subsequently diagnosed are not systematically monitored. HIV in children: Information specific for pediatric cases of HIV (<13 years of age) are also collected. A pediatric case report form is used to collect this information. For each case of perinatal HIV exposure, a medical record extraction is conducted for the motherchild pair. Information collected about the mother includes demographics, risk behavior, HIV testing information, and adequacy of prenatal care. Information collected about the infant includes HIV preventive treatment, testing information and final HIV status. 73

80 Death: Reported cases are assumed to be alive unless specifically confirmed to be dead. Information about death is obtained from several sources. DPH Vital Records provides year end data and periodically comprehensive data for matching against the HIV registry to update case vital status and import cause of death. Also, the CDC provides data from the Social Security Master Death file as well as the National Death Index to permit the identification of deaths among Connecticut HIV cases that occur in other states. Due to the lag in reporting death information is analyzed at least 12 months after the most recent diagnosis year. Incidence estimation: Connecticut has participated in HIV Incidence Surveillance since The data collected by this project contributes to the national estimate of HIV incidence and also allows for a Connecticut estimate to be generated. The estimate is based on results of a laboratory test conducted on remnant diagnostic specimens that indicates whether the person has been infected in the past six months. The test is licensed only for surveillance (not clinical) use because of the high false positive and high false negative rates for individuals. A statistical model adjusts for this as well as the testing history of the demographic and behavioral risk group characteristics of the case yielding a more reliable population estimate. The estimate is conducted yearly. Molecular HIV surveillance: Since 2009 Connecticut has participated in an HIV surveillance project whose aims are to characterize genotype and resistance patterns of HIV in newly diagnosed cases. Surveillance is based on the reporting of the genome sequence in the pol region of HIV by laboratories. Rate calculation: To calculate a rate, the number of cases of the disease and the size of the population at risk are needed. In the example below, the 2010 black PLHW rate is calculated and compared to the rate of white PLWH. In this example, the number of PLWH was approximately the same for both groups but because the overall number of blacks was only 13% that of whites the rate among black PLWH was seven-fold higher in blacks. Using rates, risk of being HIV positive in different groups can be compared. In this example, the risk of being HIV positive is seven-times higher in blacks than it is in whites (1,019/137 = 7.4). This is an unadjusted rate. With a statistically adjusted rate the different age and sex differences between PLWH and the general population could be incorporated into the rate. Typically, unadjusted rates are used in HIV reports. o Black: (3,416 HIV cases / 335,119 population) X 100,000 = 1,019 per 100,000 o White: (3,482 HIV cases / 2,546,262 population) X 100,000 = 137 per 100,000 o Population data is typically taken from the US Census conducted every ten years (most recently in 2010) or from population estimates in inter-decennial years ( Rates in populations of small size, such as small towns, should be interpreted cautiously because sporadic cases in a small population can exaggerate the rate and would have large margins of error. o Rates can be calculated for any group where the number of new cases and the size of the population are known. For example, rates can be calculated for sex, race, and age groups. o Rates cannot be calculated with a high degree of confidence for some subgroups important to HIV planning (i.e., IDU, MSM) because the size of these populations is not certain. CDC has recently estimated the population of MSM and IDU in the 74

81 Appendix 2. Description of Data Sources United States allowing for estimates to be made of rates in those groups. Connecticut rate estimates can also be made with the caveat that the national estimate may not be applicable to individual states. Data source Description of methods Strengths and limitations HIV Surveillance Provider and laboratory reporting of HIV infection is required. EHARS, Strengths: Registry is the HIV surveillance registry. Statewide data. Additional information about HIV surveillance data can be found at the following website: factors for infection. Hepatitis C Surveillance Registry Sexually Transmitted Diseases Surveillance Registry Laboratory findings for hepatitis C are laboratory reportable. Acute hepatitis C cases are physician reportable. Additional information about hepatitis C can be found at the following web site: Chlamydia, gonorrhea, syphilis, chancroid, and neonatal herpes are required to be reported to DPH by laboratories and providers. DPH staff follow-up on all syphilis cases to collect additional information about contacts, demographics, and behavioral characteristics. Additional information about STDs can be found at the following web site: Includes information about demographics and risk Can be matched with other databases (STD, death, HCV). Limitations: Information about recent cases tends to be incomplete. Strengths Statewide data Enhanced surveillance activities collect information about risk factors. Limitations: Information about residence and demographics is incomplete. Difficult to detect new infections. Strengths: Statewide data Includes information about demographics and risk factors (syphilis) for infection. Interviews in the context of partner notification are conducted with all syphilis cases and have established MSM as a risk factor. Limitations: Information about recent cases may be incomplete. 75

82 Vital Records Vital Records Behavioral Risk Factor Surveillance System (BRFSS) Death data - Vital records supplied data about deaths in Connecticut. Included is information about primary and secondary causes of death. Information about deaths is provided through the Death Certificate reporting process. Death data for Connecticut can be found at the following website: #46983 Hospitalization data - Hospitalization refers to any discharge from a nonfederal, short-stay, acute-care, general hospital in Connecticut. Hospitalizations are expressed as numbers of discharges, not as unduplicated patients; a single patient with multiple hospitalizations can thus be counted more than once. Hospital discharges are recorded in the state s hospital discharge abstract and billing database, which is maintained by the Connecticut Office of Health Care Access. Hospitalization data can be found at the following website: #47732 The BRFSS is an ongoing telephone survey of adults conducted in all 50 states and coordinated by the Centers for Disease Control and Prevention (CDC) in Atlanta, GA. Households are randomly selected and contacted by a contractor who conducts most interviews in the evenings and on weekends. Once an interviewer reaches a household, a random selection of adult household members is made to choose one person to participate in the survey. Listed and unlisted residential telephone numbers are included in the sample, and in 2011, approximately fifteen percent of the interviews were completed by way of cellular telephones. The questionnaire changes somewhat from year-to-year and state-to-state to meet changing needs and address state specific priorities. The BRFSS originally collected data on health behaviors related to the leading causes of death, but has since been expanded to include issues related to health care access, utilization of preventive health services, and to address emerging issues such as cigar smoking or diet pill use. At the end of each year data are compiled and adjusted to be representative of all adults in the state, and returned to states for analysis. Data for all states are available via the CDC BRFSS website. Strengths: Statewide data Includes information about persons with HIV who die. Matching with ehars can update vital status of HIV/AIDS cases Limitations: This data can be several years out of date due to time needed to complete reporting. Strengths: Statewide data Includes information about demographics of persons with HIV who are hospitalized. Limitations: This data can be several years out of date due to time needed to complete reporting. Only the first discharge code is included in the data presented here. Discharge data is not deduplicated (same patient could be in more than one discharge). Strengths: Statewide data Includes information about demographics and risk factors for HIV. Includes information about HIV testing. Data are weighted to population characteristics. Weaknesses: Telephone survey. Difficult to reach populations and groups which represent small percentages of the population will be contacted infrequently. Information about the BRFSS in Connecticut can be found at the following website: 76

83 7 Appendix 3. Glossary (provided by Holt, Wexler, & Farnam) Term Care or Prevention Definition 77 AIDS Drug Assistance Program (ADAP) AIDS Education and Training Center (AETC) Application Care Administered by states and authorized under Part B of the Modernization Act. Provides FDA-approved medications to low-income individuals with HIV disease who have limited or no coverage from private insurance or Medicaid. Care Regional centers providing education and training for primary care professionals and other AIDS-related personnel. Authorized under Part F of the Modernization Act (formerly the CARE Act). Prevention The health department s application to CDC for funding. Contains a proposed budget to support a specific set of prevention programs and interventions. Antiretroviral Care A substance that fights against a retrovirus, such as HIV. AIDS Service Organization (ASO) Capacity/Capacity Building Care CARE Act (Ryan White Comprehensive AIDS Resources Emergency Act) See also: Ryan White HIV/AIDS Treatment Modernization Act of 2006 Prevention/ Care An organization that provides primary medical care and/or support services to populations infected with and affected by HIV disease. ASO s also provide prevention services to HIV+ individuals and populations at risk. Core competencies that substantially contribute to an organization s ability to deliver effective HIV/AIDS primary care and health-related support services. Capacity development activities should increase access to the HIV/AIDS service system. And reduce disparities in care among underserved PLWH/A in the EMA. Prevention An activity that increases a community s ability to deliver effective HIV prevention programs. Care Federal legislation created to address the unmet health care and service needs of people living with HIV disease (PLWH) and their families. HRSA administers HIV/AIDS programs under Parts of the Act. Part A: HIV Emergency Relief Grant Program for Eligible Metropolitan Areas. Provides formula and supplementary grants to EMAs that are disproportionately affected by the HIV epidemic. Part B: HIV Care Grants to States. Provides formula grants to states, US territories, D.C. and Puerto Rico to provide health care and support services for PLWH/A. Grantees must also provide therapeutics to treat HIV/AIDS under ADAP. 77

84 Term Care or Prevention Definition 78 CARE Act (Ryan White Comprehensive AIDS Resources Emergency Act) continued CARE Act Data Report (CADR) Companion Awareness and Risk Reduction (CARE) Program Part C: HIV Early Intervention Services. Supports outpatient HIV early intervention services for lowincome, medically underserved people in existing primary care systems. Designed to prevent the further spread of HIV/AIDS, delay the onset of illness, facilitate access to services, and provide psychosocial support to PLWH/A. Part D: Coordinated HIV Services and Access to Research for Children, Youth, Women, and Families. A special grant program to coordinate HIV services and access to research for children, youth, women and families in a comprehensive, community-based, family-centered system of care. Part F: Special Projects of National Significance Program. To support the development of innovative models of HIV/AIDS care. These models are designed to address special care needs of PLWH/A in minority and hard-to-reach populations. Part F: AIDS Education and Training Centers. A national network of centers that conduct targeted, multidisciplinary education and training programs for health care providers. Part F: AIDS Dental Reimbursement Program. A grant program which assists accredited dental schools and post-doctoral dental programs with uncompensated costs incurred in providing oral health treatment to HIV+ patients. Service categories for all CARE Act Parts: Ambulatory/outpatient medical care, Drug reimbursement programs, Health insurance, Home health care, Home- and community-based care, Oral health, Hospice services, In-patient personnel costs, Mental health services, Nutritional counseling, Rehabilitation services, Substance abuse services, Treatment adherence services, Child care services, Child welfare services, Buddy/companion services, Case management, Client advocacy, Day or respite care, Early intervention services, Emergency financial assistance, Food bank/home delivered meals/nutritional supplements, Health education/risk reduction, Housing assistance, Housing-related services, Legal services, Outreach services, Permanency planning, Psychosocial support services, Referral, Transportation, Other services (translation/interpretation), Program support, Grantee administrative costs, Quality management. Care A provider-based report generating aggregate client, provider, and service data for all CARE Act programs. Reports information on all clients who receive at least one service during the reporting period. Prevention State program that assists in the anonyomous or confidential notification for sex and needle sharing partners that they may be at risk. Notification is done by Disease Intervention Specialists from the State Health Department. 78

85 Term Care or Prevention Definition 79 CD4 Cells, CD4+ Cells Care These cells are responsible for coordinating much of the immune response. HIV s preferred targets are CD4+ cells, which have a docking molecule on their surface. Destruction of CD4+ cells is the major cause of the immunodeficiency observed in AIDS, and decreasing CD4 levels appear to be the best indicator for developing opportunistic infections. CD4 Cell Count Care The number of CD4 cells per one cubic millimeter of blood. As the CD4 cell count declines, the risk of developing opportunistic infections increases. Normal adult range for CD4 cell counts is per cubic millimeter. A CD4 count of 200 or less is an AIDS-defining condition. Centers for Disease Control and Prevention (CDC) Centers for Medicare & Medicaid Services (CMS) Prevention The federal agency responsible for monitoring diseases and conditions that endanger public health and for coordinating programs to prevent and control the spread of these diseases. Care Federal agency within HHS that administers the Medicaid, Medicare, State Child Health Insurance Program (SCHIP), and the Health Insurance Portability and Accountability Act (HIPAA). Charter CHPC The CHPC Charter describes the CHPC s mission, structure, and operating guidelines. Client-Centered Counseling Prevention Counseling conducted in an interactive manner responsive to individual client needs. The focus is on developing prevention objectives and strategies with the client. Community-based Organization (CBO) Prevention/ Care A private or non-profit organization which is representative of a community or segment of a community and which provides services to individuals or groups. Community Forum Care A small group method of collecting information from community members in which a community meeting is used to provide a directed but highly interactive discussion. Community Health Centers Care Federally funded by HRSA to provide family-oriented primary and preventive health care services for people living in rural and urban medically underserved communities. Community-level Interventions (CLI) Community Mobilization Prevention Programs designed to reach a defined community and to increase community support of the behaviors known to reduce the risk for HIV infection and transmission. CLIs aim to reduce risky behaviors by changing attitudes, norms and practices through community mobilization and organization or structural interventions. Examples of CLIs in the DEBI Project: Community PROMISE, MPowerment, Popular Opinion Leader Prevention The process by which a community s citizens are motivated to take an active role in addressing issues in their community. Focuses on developing linkages and relationships within and beyond the community to expand the current scope and effectiveness of HIV/STD prevention. 79

86 Term Care or Prevention Definition 80 Community Planning Group (CPG (now integrated with SWC forming the CHPC) Community Services Assessment (CSA) Prevention The official HIV prevention planning body that follows the CDC Guidance to develop the comprehensive HIV prevention plan for the project area. Prevention A description of the prevention needs of people at risk for spreading and becoming infected with HIV, the prevention interventions/activities implemented to address these needs, and service gaps. Comprised of Resource Inventory, Needs Assessment, and Gap Analysis. Co-morbidity Care A disease or condition, such as mental illness or substance abuse, co-existing with HIV disease. Comprehensive HIV Care and Prevention Plan Prevention/ Care An overview of all HIV care and prevention priorities, programs and activities occurring in the jurisdiction. Comprehensive Risk Prevention Client-centered HIV prevention activity with the goal of promoting the adoption of HIV risk reduction Counseling Services (CRCS) behaviors by clients with multiple, complex problems and risk reduction needs. A hybrid of HIV risk reduction counseling and traditional case management. Concurrence Prevention Refers to the CPG s belief that the health department s application for HIV prevention funds reflects the CPG s target population and intervention priorities. Confidence Interval Connecticut HIV Planning Consortium Consensus Model Consortium/HIV Care Consortium (CHPC) Prevention/ Care Prevention/ Care Prevention/ Care Care The confidence interval (CI) is a statistical term. Usually assigned the level of 95%. The 95% CI refers to an interval within which we can be 95% confident includes the estimate for which the CI was calculated. A narrow interval around an estimate means we can have more confidence in the estimate than if the interval is wide. Example, 29.6% (95% CI, ). The Statewide body existing to work collaboratively with and advise the State Department of Public Health and each Transitional Grant Area (TGA) on the provision of effective planning and the promotion, development, coordination, and administration of HIV/AIDS health care, prevention and support services. A decision-making method in which a group holds discussions on an issue and arrives at a decision as a group. The group agrees without voting. A regional or statewide planning entity established under Part B of the Modernization Act, to plan and sometimes administer Part B services. An association of health care and support service agencies serving PLWH/A under Part B. 80

87 Term Care or Prevention Definition 81 Continuous Quality Improvement Care An ongoing process that involves organization members I monitoring and evaluating programs to continuously improve service delivery. See also: Quality Improvement Continuum of Care Care An approach that helps communities plan for and provide a full range of emergency and long-term service resources to address the various needs of PLWH/A. Counseling Testing, and Referral, Services (CTRS) Cultural Competence Diffusion of Effective Behavioral Interventions (DEBI) DEBI Project Prevention The voluntary process of client-centered, interactive information sharing in which an individual learns basic information about HIV/AIDS, testing procedures, how to prevent the transmission and acquisition of HIV infection, and takes a test. Appropriate referrals are made to the CARE Program or to medical, social or prevention services. Prevention/ Care The knowledge, understanding and skills to work effectively with individuals from differing cultural backgrounds. Prevention A national level strategy to provide training and ongoing technical assistance on selected evidence-based HIV/STD interventions to state and community HIV/STD program staff. Prevention A set of 26 interventions listed by their primary population or risk group, that are packaged in userfriendly kits. Training and technical assistance is also provided. The interventions are: Clear (HIV+) Connect (Heterosexual Adults) D up: Defend Yourself! (MSM of Color) Focus on Youth + Impact (High Risk Youth) Healthy Relationships (HIV+) Holistic Health Recovery Program (HIV+ IDU) Many Men, Many Voices (MSM of color) MIP (Drug Users IDU) MPowerment (Young MSM) Nia (Heterosexual Adult Men) 81

88 Term Care or Prevention Definition 82 Demographics Division of Service System Care Early Intervention Services Care (EIS) Effective Behavioral Interventions (EBI) Partnership for Health (HIV+) Popular Opinion Leader (MSM) Project START (All Released Prisoners) PROMISE (All) RAPP - Real AIDS Prevention Program (Heterosexual Women and their partners) RESPECT (Heterosexual Adults) Safe in the City (Heterosexual/MSM STD Clinic Patients) Safety Counts (Drug Users) SHIELD (Drug Users) SISTA (Heterosexual Adult women) Sister to Sister (Heterosexual Adults in Primary Care) StreetSmart (High Risk Youth, runaway/homeless ) Teens Linked to Care (HIV+ Youth) Voices/Voces (Hero sexual Adults, African-American and Latino/a ) Prevention The statistical characteristics of human populations, such as age, race, ethnicity, and sex that can provide insight into the development, culture, and sex-specific issues The division within HRSA s HIV/AIDS Bureau that administers Part A/B of the Modernization Act. Activities designed to identify individuals who are HIV+ and get them into care as quickly as possible. Funded through Parts A and B, includes outreach, counseling and testing, information and referral services. Under Part C, also includes comprehensive primary medical care for PLWH/A. Prevention Evidence-based program models that were proven effective with a given population in a given venue through rigorous research studies. In order to be proven effective they had to produce positive behavior change among participants such as increased condom use, or produce positive health outcomes such as a reduction in the number of new infections. 82

89 Term Care or Prevention Definition 83 Eligible Metropolitan Area (EMA) Care Under the Ryan White HIV/AIDS Treatment Modernization Act, metropolitan areas with a cumulative total of more than 2000 cases of AIDS during the most recent 5-year period and a population of 50,000 or more. Epidemic Care A disease that occurs clearly in excess of normal expectation and spreads rapidly through a demographic segment of the population. Epidemic diseased can be spread from person to person or from a contaminated source such as food or water. Prevention The occurrence of cases of an illness, specific health-related behavior, or other health-related events in a community or region in excess of normal expectancy. Epidemiological Profile (Epi Profile) Care A description of the current status, distribution, and impact of an infectious disease or other healthrelated condition in a specified geographic area. Prevention A description of the current status, distribution, and impact of an infectious disease or other healthrelated condition in a specified geographic area. Epidemiology Care The branch of medical science that studies the incidence, distribution, and control of disease in a population. Prevention The study of factors associated with health and disease and their distribution in the population. Exposure Category Care How an individual may have been exposed to HIV, such as injecting drug use, male-to-male sexual contact, and heterosexual contact. See also: Transmission Category, Risk Factor/Behavior Family Centered Care Care A model in which systems of care under Part D are designed to address the needs of PLWH/A and affected family members as a unit, providing or arranging for a full range of services. Family structures may range from the traditional, biological family unit to non-traditional family units with partners, significant others, and unrelated caregivers. Focus Group Prevention A method of information collecting involving a carefully planned discussion among a small group of individuals from the target population led by a trained moderator. Formula Grant Application Care The application used by EMAs and states each year to request an amount of CARE Act (now Modernization Act) funding, which is determined by a formula based on the number of reported AIDS case in their location and other factors. 83

90 Term Care or Prevention Definition 84 Gap Analysis Prevention A comparison of the needs of high-risk populations, as determined by the needs assessment, to existing prevention services as described in the resource inventory. It identifies the portion of prevention needs being met with CDC funds. Grantee Care The recipient of CARE Act (now Modernization Act) funds responsible for administering the award. Group-level Interventions (GLI) GLI continued Guidance Health Education and Risk Reduction Interventions (HE/RR) Highly Active Antiretroviral Therapy (HAART) Prevention Health education and risk reduction programs that target groups of people with common characteristics (i.e. risk group, race/ethnicity, etc.) Aims to teach HIV information, improve attitudes toward prevention, increase supportive norms and teach behavioral skills.. Examples of GLIs in the DEBI Project: Healthy Relationships, Holistic Health Recovery Program, Many Men, Many Voices, SISTA, Teens Linked to Care, Voices/Voces Prevention The CDC document that gives information and rules for receiving funds for HIV prevention programs and defines the process of HIV prevention community planning. Prevention Organized efforts to reach people at increased risk of becoming HIV-infected or, if already infected, of transmitting the virus to others. The goal is to reduce the risk of infection. Care HIV treatment using multiple antiretroviral drugs to reduce viral load to undetectable levels and maintain/increase CD4 levels. HIV Disease Care Any signs, symptoms, or other adverse health effects due to the human immunodeficiency virus. HIV Prevention Community Planning Prevention The cyclical, evidence-based planning process in which authority for identifying priorities for funding HIV prevention programs is vested in one or more planning groups in a state or local health department that receives HIV prevention funds from CDC. HIV/AIDS Bureau (HAB) Care The bureau within HRSA of the US Department of Health and Human Service (HHS) that is responsible for administering the Ryan White CARE Act. HIV/AIDS Dental Reimbursement Program Home and Community Based Care Care The program within the HRSA HAB s Division of Community Based Programs that assists with uncompensated costs incurred in providing oral health treatment to PLWH/A. Care A category of eligible services that states may fund under Part B. 84

91 Term Care or Prevention Definition 85 Housing Opportunities for People with AIDS (HOPWA) Health Resources and Services Administration (HRSA) Housing and Urban Development (HUD) Care Care Care A program administered by the US Department of Housing and Urban Development (HUD) that provides funding to support housing for PLWH/A and their families. The agency of the US Department of Health & Human Services that administers various primary care programs for the medically underserved, including the Ryan White CARE Act (now the Modernization Act). The federal agency responsible for administering community development, affordable housing, and other programs including HOPWA. Incidence Care The number of new cases of a disease that occur during a specified time period. Prevention The number of new cases of a disease diagnosed in a defined population in a specified period. Incidence Rate Care The number of new cases of a disease that occur in a defined population during a specified time period, often expressed per 100,000 persons. Prevention The number of diagnoses of new cases of a disease diagnosed in a defined population in a specified period, divided by that population. It is often expressed per 100,000 persons. Individual-level Interventions Injection Drug Users (IDU) Care Intervention Prevention One-to- one educational encounter with individuals from targeted at risk populations. Aim to teach HIV information, support positive attitudes and norms, and endorse protective behaviors. May also teach prevention skills (i.e. cleaning needles, using condoms) Injection drug user. Prevention People who are at risk for HIV infection through the shared use of equipment used to inject drugs with an HIV-infected person. Prevention An activity or set of related activities intended to bring about HIV risk reduction in a particular target population using a common strategy of delivering the prevention message. Has distinct objectives and a protocol outlining the steps for implementation. Jurisdiction Key Informant Interview Prevention An area or region that is the responsibility of a particular governmental agency. Usually refers to an area where a state or local health department monitors HIV prevention activities. Prevention An information collection method involving in-depth interviews with a few individuals carefully selected because of their personal experiences and/or knowledge. 85

92 Term Care or Prevention Definition 86 Medicaid Spend-down Care A process whereby an individual who meets the Medicaid medical eligibility criteria but has income that exceeds the financial eligibility ceiling, may spend down to eligibility level. The individual does this by deducting accrued medically related expenses from countable income. Medical Case Management Care Met Need A collaborative process that facilitates recommended treatment plans to assure the appropriate medical care is provided to disabled, ill or injured individuals. Prevention A requirement for HIV prevention services within a specific target population that is currently being addressed through existing HIV prevention services. These are available to, appropriate for, and accessible to that population as determined through the resource inventory and assessment of prevention needs. Migrant Health Centers Care Federally funded by HRSA s Bureau of Primary Health Care, centers provide a broad array of culturally and linguistically competent medical and support services to migrant and seasonal farm workers and their families. Minority AIDS Initiative (MAI) Care A national initiative that provides special resources to reduce the spread of HIV/AIDS and improve health outcomes for people living with HIV disease within communities of color. Enacted to address the disproportionate impact of the disease in such communities. Modernization Act Care See: Ryan White HIV/AIDS Treatment Modernization Act of 2006 Multiply Diagnosed Care A person having multiple morbidities (e.g., substance abuse and HIV infection). See also: Co-morbidity Needs Assessment Care A process of collecting information about the needs of PLWH/A (both those receiving care and those not in care), identifying current resources available to meet those needs, and determining gaps in care. Nonconcurrence Office of Management and Budget (OMB) Prevention The process of obtaining and analyzing findings to determine the type and extent of unmet needs in a particular population or community. Prevention A CPG s disagreement with the program priorities identified in the health department s application for CDC funding. Nonconcurrence may also mean that the CPG thinks the health department has not fully collaborated in developing the plan. Care The office within the executive branch of the federal government that prepares the President s annual budget, develops the federal fiscal program, oversees administration of the budget, and reviews government regulations. 86

93 Term Care or Prevention Definition 87 Opportunistic Infection or Condition Outcome Evaluation Care An infection or cancer that occurs in persons with weak immune systems due to HIV. Kaposi s Sarcoma, toxoplasmosis and pneumocystis pneumonia are examples. Prevention The assessment of the immediate or direct effects of a program on the program participants. Also assesses the extent to which a program attains its objectives related to intended short- and long-term change for a target population. Outreach Care Principal purpose is to identify people with HIV disease, particularly those who know their HIV status, so that they may become aware of and enrolled in ongoing primary care and treatment. Prevention HIV/AIDS educational interventions generally conducted by peer or paraprofessional educators face-toface with high risk individuals in the clients neighborhoods or other areas where clients congregate. Usually includes distribution of condoms, bleach, sexual responsibility kits, and educational materials. Partner Counseling and Referral Services (PCRS) or Partner Notification Prevention A systematic approach to notifying sex and needle-sharing partners of HIV+ people of possible exposure to HIV so partners can avoid infection, or, if already infected, can prevent transmission to others. PCRS helps partners gain early access to individualized counseling, HIV testing, medical evaluation, treatment, and prevention services. Patient Referral Prevention When the client (patient) notifies and refers his or her own partners for HIV testing. Planning Council Care A planning body appointed or established by the Chief Elected Official of an EMA whose basic function is to assess needs, establish a plan for the delivery of HIV care in the EMA, and establish proprieties for the use of Part A of the Modernization Act funds. Planning Councils are not mandatory for TGAs unless the TGA was an EMA in FY Planning Process Care Steps taken and methods used to collect information, analyze and interpret it, set priorities, and prepare a plan for rational decision making. PLWH/A Prevention/ People living with HIV disease or AIDS. Care Procedures and Operations CHPC Document that describes and guides the CHPC s day-to-day functioning Manual Prevalence Care The total number of persons in a defined population living with a specific disease or condition at a given Prevention time. 87

94 Term Care or Prevention Definition Prevalence Rate Care The proportion of a population living at a given time with a condition or disease. 88 Prevention Need Prevention Program Prevention Services Primary Prevention Priorities Priority Setting Prevention The number of people living with a disease or condition in a defined population at a given time, divided by that population. Often expressed per 100,000 persons. Prevention A documented necessity for HIV prevention services within a specific target population. The documentation is based on numbers, proportions, or other estimates of the impact of HIV or AIDS among this population from the epidemiologic profile. Also based on information showing that members of this population are engaging in behaviors that place them at high risk for HIV transmission. Prevention A group of interventions designed to reduce disease or other negative results among individuals whose behavior, environment, and/or genetic history place them at high risk. Prevention Interventions, strategies, programs and structures designed to change behavior that may lead to HIV infection or other disease. Prevention To reduce the transmission and acquisition of HIV infection through a variety of strategies, activities, interventions, and services. Prevention In community planning, a rank-ordered set of target populations and recommended interventions for those populations. Prevention/ Care The process used to establish priorities among prevention and care service categories and priorities, to ensure consistency with locally identified needs, and to address how best to meet each priority. Process Evaluation Prevention A descriptive assessment of a program s actual operation and the level of effort taken to reach desired results; that is, what was done, to whom, and how, when, and where. Protease Inhibitor Care A drug that binds to and blocks HIV protease from working, thus preventing the production of new functional viral particles. Provider Referral Prevention When health professionals notify the patient s partners of their exposure. Public Health Surveillance Prevention An ongoing, systematic process of collecting, analyzing, and using data on specific health conditions and diseases in order to monitor these health problems to detect changes in trends or distribution. Qualitative Data Prevention Data presented in narrative form, describing and interpreting the experience of individuals or groups. Quality Care The degree to which a health or social service meets or exceeds established professional standards and user expectations. 88

95 Term Care or Prevention Definition 89 Quality Assurance (QA) Care The process of identifying problems in service delivery, designing activities to overcome these problems, and following up to ensure that no new problems have developed and that corrective actions have been effective. Quality Improvement (QI) Care An ongoing process of monitoring and evaluating activities and outcomes in order to continuously improve service delivery. Quantitative Data Rank Order Prevention Data reported in numerical form. Prevention A list of priorities in order of importance. Reflectiveness Care The extent to which the demographics of the planning body s membership look like the demographics of the epidemic in the service area. Relevance Prevention The extent to which an intervention plan addresses the needs of affected populations in the jurisdiction and of other community stakeholders. Also the extent to which the population targeted in the intervention plan is consistent with the target population in the comprehensive HIV prevention plan. Representative Care Term used to indicate that a sample is similar to the population from which it was drawn, and therefore can be used to make inferences about that population. Prevention Term used to indicate that a sample is similar to the population from which it was drawn, and therefore can be used to make inferences about that population. Resource Allocation Care The Part A planning council responsibility to assign now Modernization Act amounts or percentages to established priorities across specific service categories, geographic areas or populations. Resource Inventory Risk Factor or Risk Behavior Care Routine HIV Testing Prevention The existing community services for HIV prevention. Consists of the current HIV prevention and related resources and activities in your project area. Behavior or other factor that places a person at risk for disease; for HIV/AIDS, this includes such factors as male-to-male sexual contact, injection drug use, and commercial sex work. Prevention Factors or behaviors that place a person at risk for disease; for HIV/AIDS, this includes sharing injection drug use equipment, and/or unprotected sexual contact, with an infected person. See also: Exposure Category, Transmission Category Prevention Voluntary HIV testing conducted as a routine part of medical care. 89

96 Term Care or Prevention Definition 90 Ryan White HIV/AIDS Treatment Modernization Act of 2006 (also known as the Modernization Act) Secondary Prevention Care The newly enacted Ryan White HIV/AIDS Treatment Modernization Act of 2006 provides the Federal HIV/AIDS programs in the Public Health Service Act to respond effectively to the changing epidemic. The new law changes how Ryan White funds can be used, with an emphasis on providing life-saving and life-extending services for people living with HIV/AIDS across this country. Part A: funds Eligible Metropolitan Areas and Transitional Grant Areas. 75% of funds must be spent on core services. Part B: funds States.75% of funds must be spent on core services. Part C: funds early intervention services. 75% of funds must be spent on core services. Part D: Grants for support services for women, infants, children and youth. Part F: comprises Special Projects of National Significance (SPNS), AIDS Education & Training Centers, Dental Programs, and Minority AIDS Initiative. Core Services: Outpatient and ambulatory health services, pharmaceutical assistance, substance abuse outpatient services, oral health, medical nutritional therapy, health insurance premium assistance, home health care, hospice services, mental health services, early intervention services, and medical case management including treatment adherence services. Support Services: Services needed by individuals with HIV/AIDS to achieve medical outcomes, which are those outcomes affecting the HIV-related clinical status of an individual with HIV/AIDS. Examples include: respite care, outreach, medical transportation, language services, referrals for health care and other support services. Prevention To prevent a person living with HIV from becoming ill or dying as a result of HIV, opportunistic infections, or AIDS, through a variety of strategies, activities, interventions, and services. Seroprevalence Care The number of persons in a defined population who test HIV+ based on HIV testing of blood specimens. Presented as a percent of total specimens or as a rate per 100,000 persons tested. Prevention The number of people in a population who test HIV+ based on serology (blood serum) specimens. Often presented as a percent of total specimens or as a rate per 1000 persons tested. Service Gaps Care All the service needs of all PLWH/A except for the need for primary health care for individuals who know their status but are not in care. For example, oral health care, mental health care, nutritional services, etc. (See Unmet Need for Health Services) 90

97 Term Care or Prevention Definition 91 STD Statewide Coordinated Statement of Need (SCSN) Substance Abuse & Mental Health Services Administration (SAMHSA) Surveillance Prevention/ Sexually transmitted disease Care Care A written statement of need for the entire state developed through a process designed to collaboratively identify significant HIV issues and maximize CARE Act (now Modernization Act) program coordination. Care Federal agency within HHS that administers programs in substance abuse and mental health. Prevention/ Care An ongoing, systematic collection, interpretation, and dissemination of data on specific health conditions. Surveillance Report Care A report providing information on the number of reported cases of a disease such as AIDS, nationally and for specific sub-populations. Prevention Documents the number of reported cases of a disease for specific locations and subpopulations. Targeted Outreach Prevention Outreach to a particular population with the intent of getting them into specific prevention services or interventions. Target Populations Care Populations to be reached through some action or intervention; may refer to groups with specific demographic or geographic characteristics. Prevention Groups of people who are the focus of HIV prevention efforts because they have high rates of HIV infection and high levels of risky behavior. Technical Assistance (TA) Care The delivery of practical program and technical support to the CARE Act community. TA is to assist grantees, planning bodies, and affected communities in designing, implementing and evaluating CARE Act-supported planning and primary care service delivery systems. Prevention The provision of direct or indirect support to build capacity of individuals or groups to carry out programmatic and management responsibilities with respect to HIV prevention. Transitional Grant Area (TGA) Care Under the Ryan White HIV/AIDS Treatment Modernization Act, cities that have between 1000 and 1999 cumulative AIDS cases during the most recent 5 years, and a population of 50,000 or more. Transmission Category Care A grouping of disease exposure and infection routes; in relation to HIV disease, exposure groupings include men who have sex with men, injection drug use, heterosexual contact, and perinatal transmission. 91

98 Term Care or Prevention Definition 92 Prevention In describing HIV/AIDS cases, the same as exposure categories (based) on how an individual may have been exposed to HIV. See also: Exposure Category, Risk Factor/Behavior Unaware Population Care People who are HIV+ and are unaware of their status. Unmet Need for Health Services Unmet Need Care (HRSA Definition) Prevention (CDC Definition) The need for HIV-related health services among individuals who know their HIV status but are not receiving regular primary health care. Regular HIV-related primary health care is defined as evidence of viral load testing, CD4 counts, or provision of antiretroviral medications in a given 12-month period. The term unmet need is used only to describe the unmet need for HIV-related primary health care, and is not considered a service gap. (See Service Gaps) A requirement for HIV prevention services within a specific target population that is not currently being addressed through existing HIV prevention services and activities, either because no services are available or because available services are either inappropriate or inaccessible. Viral Load Care The quantity of HIV RNA in the blood. Viral load is used as a predictor of disease progression. Viral load test results are expressed as the number of copies per milliliter of blood plasma. Weighting Prevention A method for determining the level of importance of two or more options relative to one another. Used to compare factors for populations and interventions. 92