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Stigma and the HIV Continuum of Care J. Dennis Fortenberry MD MS J. Dennis Fortenberry MD MS Indiana University School of Medicine I have no conflicts of interest relevant to this presentation. No medications or treatment will be discussed in this presentation. Background • Continuum of care as a lifespan chronic illness model – Definition of wellness in context during chronic disease – Trajectories of wellness / illness balance – Transmission potential separates HIV from other chronic conditions • Stigma influences HIV health at multiple points over the lifespan – Disclosure to others – Responsibility for transmission prevention – Responsibility to be a “good” HIV patient Stages of Continuum of Care in HIV testing & treatment 75% 67% 50% 24% Gardner et al. Clin Infect Dis. 2011; 52 (6): 793-800. Philbin et al, AIDS & Behavior, in press Linkage to Care and Engagement in Care overall and by site Site Eligible Referrals [%] Linked to Care (%) Engaged in Care (%) Linked & Engaged, % Overall 1679 [100] 1172 (69.8) 1043 (89.0) 62.1 A 65 (3.9) 34 (52.3) 26 (76.5) 40.0 B 160 (9.5) 95 (59.4) 67 (70.5) 41.9 C 70 [4.2] 51 (72.9) 47 (92.2) 67.1 D 105 (6.3) 61 (58.1) 59 (96.7) 56.2 E 147 (8.8) 95 (64.6) 84 (88.4) 57.1 F 105 (6.3) 70 (66.7) 61 (87.1) 58.1 G 103 [6.1] 63 (61.2) 61 (96.8) 59.2 H 60 (3.6) 44 (73.3) 36 (81.8) 60.0 I 90 (5.4) 60 (66.7) 55 (91.7) 61.2 J 102 [6.1] 83 (81.4) 70 (84.3) 68.6 K 169 (10.1) 126 (74.6) 118 (93.7) 69.9 L 288 (17.2) 208 (72.2) 202 (97.1) 70.1 M 124 (7.4) 102 (82.3) 90 (88.2) 72.6 N 82 (4.9) 73 (89.0) 60 (82.2) 73.2 O 9 [0.5] 7 (77.8) 7 (100.0) 77.8 Why does stigma matter in the HIV continuum of care? • Prevention • Testing • Linkage to care • Retention in care Multi-Dimensional Continuum of Care for HIV Prevention, Diagnosis & Treatment Macro-level – Public Health and Health Care Infrastructure Systems Public Health System Meso-level – Testing, Referral, Treatment and Community Mobilization Networks Care Delivery Networks Prevention Networks Prevention Services Services No Transmission Risk Care Milestones Timeline Targets Years Health Care System Testing Networks Adult Care Networks Youth Care Networks Micro-level – Providers/Clients/Clinics LTC services Testing services Months to Years Risk behaviors Prevention behaviors PrEP (Vaccines) HIV test Transition services Reduced Transmission Risk Less Transmission Risk Least Transmission Risk Reduced Transmission Risk? Linkage to Care LTC Engagement in Care EIC Retention in Care RIC Adult Care Greatest Transmission Risk Infection Case management and retention services Days HIV test Results Months Appointment Adherence Secondary Prevention Adherence Years Undetectable Viral Load ART Initiation & Adherence Lifelong Adult Health Care What is stigma? • Internalized HIV stigma – endorsing negative feelings and beliefs associated with HIV and applying them to the self • Anticipated HIV stigma – expectations of discrimination, stereotyping, and/or prejudice from others in the future due to one’s HIV • Enacted HIV stigma – experiences of discrimination, stereotyping, or prejudice from others in the past or present due to one’s HIV Earnshaw et al. AIDS Behav (2013) Different stigma mechanisms have different health outcomes Affective Helplessness Acceptance Perceived Benefits Internalized HIV Stigma Behavioral Adherence to ART Adherence to medical visits Anticipated HIV Stigma Physical CD4 / Viral load Chronic illness function Enacted HIV Stigma Earnshaw et al. AIDS Behav (2013) Psychosocial model of stigma activation Structural relationships Social power Cultural power Legal power Public health power Marginalization Stigma processes Labeling Enacted Stigma Status Loss Anticipated Stigma Stereotyping Isolation Internalized Stigma Stigma outcomes Structural Discrimination Self Discrimination Individual Discrimination Multi-Dimensional Continuum of Care for HIV Prevention, Diagnosis & Treatment Macro-level – Public Health and Health Care Infrastructure Systems Public Health System Meso-level – Testing, Referral, Treatment and Community Mobilization Networks Care Delivery Networks Prevention Networks Prevention Services Services No Transmission Risk Care Milestones Timeline Targets Years Health Care System Testing Networks Adult Care Networks Youth Care Networks Internalized Micro-level – Providers/Clients/Clinics Stigma LTC services Testing services Months to Years Risk behaviors Prevention behaviors PrEP (Vaccines) HIV test Transition services Reduced Transmission Risk Less Transmission Risk Least Transmission Risk Reduced Transmission Risk? Linkage to Care LTC Engagement in Care EIC Retention in Care RIC Adult Care Greatest Transmission Risk Infection Case management and retention services Days HIV test Results Months Appointment Adherence Secondary Prevention Adherence Disclosure Years Undetectable Viral Load ART Initiation & Adherence Lifelong Adult Health Care Internalized stigma and HIV testing • Fear of results • Lack of perceived risk • Reluctance to disclose Nelson et al. J Urban Health, 2010 Multi-Dimensional Continuum of Care for HIV Prevention, Diagnosis & Treatment Macro-level – Public Health and Health Care Infrastructure Systems Public Health System Internalized Stigma Meso-level – Testing, Referral, Treatment and Community Mobilization Networks Care Delivery Networks Prevention Networks Prevention Services Services No Transmission Risk Care Milestones Timeline Targets Years Health Care System Testing Networks Adult Care Networks Youth Care Networks Micro-level – Providers/Clients/Clinics LTC services Testing services Months to Years Risk behaviors Prevention behaviors PrEP (Vaccines) HIV test Transition services Reduced Transmission Risk Less Transmission Risk Least Transmission Risk Reduced Transmission Risk? Linkage to Care LTC Engagement in Care EIC Retention in Care RIC Adult Care Greatest Transmission Risk Infection Case management and retention services Days HIV test Results Months Appointment Adherence Secondary Prevention Adherence Disclosure Years Undetectable Viral Load ART Initiation & Adherence Lifelong Adult Health Care Institutional and Structural Discrimination in HIV Testing • Social geography of test sites – Government complex – Site associated with HIV/STD • Space (physical and virtual) – Hidden / difficult access of test site – Difficult information access • Organizational behavior – Inflexible testing schedules – Risk assessment by phone • Staff behavior – Silence or apathy about testing concerns – Breach of confidentiality – Judgments about risk Meyerson et al AIDS Patient Care STDS (2014) Institutional and Structural Discrimination, by stage of testing experience Institutional Structural First Encounter Social Geography Physical / Virtual Space Organizational Behavior Staff Behavior Entry / Reception Staff Behavior Social Geography Organizational Behavior Staff Behavior Staff Behavior Staff Behavior Testing Experiences HIV Continuum of Care, Stigma, and Microaggressions Translation of daily experience into stigma • Microaggressions – verbal, behavioral or structural expression of hostility, derogation or negative attitudes – Microassaults – explicit derogation through name calling, avoidance, or overt discrimination – Microinsults – brief and apparently inconsequential demeaning of identity or behavior – Microinvalidations – unintentional exclusions, negations, or nullification based on identity or behavior Nadal (2013) That’s So Gay: Microaggressions and the Lesbian, Gay, Bisexual, and Transgender Community 7 ways microagressions affect stigma in the HIV care continuum • Assumption that sexual identity explains HIV testing, treatment and prevention behaviors • Avoidance of issues related to sexual identity • Over-identification with sexual minority clients • Interactions based on stereotyped assumptions • Expressions of heteronormative bias • Assumption of need for counseling • Assumption of risk innate to sexual identity Nadal (2013) That’s So Gay: Microaggressions and the Lesbian, Gay, Bisexual, and Transgender Community Multi-Dimensional Continuum of Care for HIV Prevention, Diagnosis & Treatment Macro-level – Public Health and Health Care Infrastructure Systems Public Health System Meso-level – Testing, Referral, Treatment and Community Mobilization Networks Care Delivery Networks Prevention Networks Prevention Services Services No Transmission Risk Care Milestones Timeline Targets Years Health Care System Testing Networks Internalized Micro-level – Providers/Clients/Clinics Stigma LTC services Testing services Months to Years Risk behaviors Prevention behaviors PrEP (Vaccines) HIV test Case management and retention services Transition services Reduced Transmission Risk Less Transmission Risk Least Transmission Risk Reduced Transmission Risk? Linkage to Care LTC Engagement in Care EIC Retention in Care RIC Adult Care Greatest Transmission Risk Infection Adult Care Networks Youth Care Networks Days HIV test Results Months Appointment Adherence Secondary Prevention Adherence Disclosure Years Undetectable Viral Load ART Initiation & Adherence Lifelong Adult Health Care HIV Linkage to Care Stigma management and complex practice Linkage Providers Community Membership Linkage Systems Formal Relationships of Testing and LTC Providers Developmental & Cultural Competence Information Systems Tracking Linkage Practices Integration of Diagnosis and LTC Crisis Management Suicidality Social Support Housing Patient Orientation Transition Continuity Case Management Stigma Management Barriers Education Communication with other professionals Written & verbal Partner Notification Services Motivation Readiness for Care Fortenberry et al., J Adolesc Health 2012 Multi-Dimensional Continuum of Care for HIV Prevention, Diagnosis & Treatment Macro-level – Public Health and Health Care Infrastructure Systems Public Health System Meso-level – Testing, Referral, Treatment and Community Mobilization Networks Care Delivery Networks Prevention Networks Prevention Services Services No Transmission Risk Care Milestones Timeline Targets Years Health Care System Testing Networks Internalized Micro-level – Providers/Clients/Clinics Stigma LTC services Case management and retention services Testing services Months to Years Risk behaviors Prevention behaviors PrEP (Vaccines) HIV test Transition services Reduced Transmission Risk Less Transmission Risk Least Transmission Risk Reduced Transmission Risk? Linkage to Care LTC Engagement in Care EIC Retention in Care RIC Adult Care Greatest Transmission Risk Infection Adult Care Networks Youth Care Networks Days HIV test Results Months Appointment Adherence Secondary Prevention Adherence Disclosure Years Undetectable Viral Load ART Initiation & Adherence Lifelong Adult Health Care Changes in internalized stigma as a function of ART Tsai et al. AIDS Behav (2013) Mixed effects model for Clinic/Provider Predictors of Engagement in Care Estimate Odds Ratio (95% CI) Ref - Data Sharing / No direct patient contact -2.64 (0.002) 0.07 (0.05, 0.09) No data sharing / Direct patient contact -0.78 (0.12) 0.46 (0.36, 0.58) Higher Ref - Lower -0.9 (0.15) 0.41 (0.30, 0.55) Data Sharing / Outreach worker function Data Sharing / Direct patient contact Outreach worker effectiveness Philben et al. AIDS Care (in press) Multi-Dimensional Continuum of Care for HIV Prevention, Diagnosis & Treatment Macro-level – Public Health and Health Care Infrastructure Systems Public Health System Internalized Stigma Meso-level – Testing, Referral, Treatment and Community Mobilization Networks Care Delivery Networks Prevention Networks Prevention Services Services No Transmission Risk Care Milestones Timeline Targets Years Health Care System Testing Networks Adult Care Networks Youth Care Networks Micro-level – Providers/Clients/Clinics LTC services Testing services Months to Years Risk behaviors Prevention behaviors PrEP (Vaccines) HIV test Transition services Reduced Transmission Risk Less Transmission Risk Least Transmission Risk Reduced Transmission Risk? Linkage to Care LTC Engagement in Care EIC Retention in Care RIC Adult Care Greatest Transmission Risk Infection Case management and retention services Days HIV test Results Months Appointment Adherence Secondary Prevention Adherence Disclosure Years Undetectable Viral Load ART Initiation & Adherence Lifelong Adult Health Care Community Mobilization and Structural Change Intervention Core Risk Factors Intermediate Outcomes Ultimate Outcomes Structural Changes Mental health services Substance use treatment Integrated HIV/STI SVC Youth-appropriate social venues Youth-friendly prevention Reduced HIV Incidence LTC Structural Changes Simplified eligibility Patient navigator Integrated treatment services Structural stigma Improved LTC, EIC and RIC Community Coalitions - Coalition with common vision/mission - Focus on population and geographic area at risk - Root cause analysis and strategic planning - Engagement of diverse community members - Documentation and tracking progress - Technical assistance and capacity building - Maintaining coalition health and function Community Mobilization Intervention LTC Committee & engagement of LHD HIV Acquisition – risk networks Number of sex partners High-risk vs low-risk partners Partner concurrency Internalized Stigma HIV Transmission – Linkage to care Stigma Disclosure Eligibility Access LTC Focus - Subcommittee focused on barriers to LTC/EIC/RIC - LHD strategically engaged in focus on youth LTC - Toolkit and training materials Willard et al. J Prevention Intervention in the Community, 2012 Care Milestone Structural Material Level Resources Micro Costs of HIV Test testing Completion Meso Costs of (TC) testing Macro HIV testing financing Micro Short TC/TRR HIV Test interval Results Meso Co-location of Receipt (TRR) TRR/LTC Macro Linkage to Care (LTC) Micro Meso Macro Engagement in Care (EIC) Micro Meso Macro Retention in Care (RIC) Micro Technology PrEP Opt-out testing Home testing systems Alternative results delivery Information technology Information systems Housing Information sharing Rapid approval Policy for rapid for services test confirmation Eligibility Early ART criteria Housing Adherence security support Social Marketing Transportation Distance medicine Eligibility criteria Effective treatments Disenrollment or loss of benefits Meso Macro Micro Transition from Youth Meso to Adult Care Macro Informal Social Influence Partner support Formal Social Control Partner Notification Mandated testing Settings Hours of operation Health fairs Standards for testing facilities Friend/family involvement Disclosure to others Stigma Stigma Mandated reporting Standards for HIV testing Crisis management Public Health Authority Standards for ART initiation Disclosure to others Adherence support Disenrollment or Loss of benefits Eligibility criteria Disclosure to others Integration of LTC/testing Patient navigators Location of services Networks of testing/ care services Housing Mental health services Maintenance of social support Youth-friendly services Social support groups Relationships w/ providers/staff Schooling Employment Interference in activities Reproductive health services Transition service Transition - skilled providers Standards for transition care Antidiscrimination Policies/laws Treatment of side-effects Transfer of information Continuity of benefits Social Connectedness Social support for testing Community testing coalitions Disclosure to others Adherence support Confidentiality Partner health care benefits Stigma and the HIV Continuum of Care Summary • Multiple effects of stigma across the HIV continuum of care • Likely ongoing effects through the life span • Evidence of efficacy at multiple intervention levels • Nobody said this was going to be easy