Stigma and the HIV Continuum of Care J. Dennis Fortenberry MD MS

1. Stigma and the HIV Continuum of CareJ. Dennis Fortenberry MD MS J. Dennis Fortenberry MD MS Indiana University School of Medicine

2. I have no conflicts of interest relevant to this presentation. No medications or treatment will be discussed in this presentation.

3. 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

4. Stages of Continuum of Care in HIV testing & treatment 75% 67% 50% 24% Gardner et al. ClinInfect Dis. 2011; 52 (6): 793-800.

5. Philbin et al, AIDS & Behavior, in press Linkage to Care and Engagement in Careoverall and by site

6. Why does stigma matter in the HIV continuum of care? • Prevention • Testing • Linkage to care • Retention in care

7. Multi-Dimensional Continuum of Care for HIV Prevention, Diagnosis & Treatment Macro-level – Public Health and Health Care Infrastructure Systems Health Care System Public Health System Meso-level – Testing, Referral, Treatment and Community Mobilization Networks Care Delivery Networks Prevention Networks Testing Networks Youth Care Networks Adult Care Networks Micro-level – Providers/Clients/Clinics Prevention Services Services Transition services Case management and retention services LTC services Testing services No Transmission Risk Reduced Trans-mission Risk Reduced Transmission Risk? Greatest Transmission Risk Less Transmission Risk Least Transmission Risk Retention in Care RIC Adult Care Engagement in Care EIC Linkage to Care LTC Infection Care Milestones Timeline Years Months to Years Days Months Years Lifelong Risk behaviors Prevention behaviorsPrEP (Vaccines) HIV test Results Adult Health Care Targets Secondary Prevention Adherence Undetectable Viral Load Appointment Adherence ART Initiation & Adherence HIV test

8. 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)

9. 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)

10. Psychosocial model of stigma activation Structural relationships Marginalization Stigma processes Stigma outcomes Labeling Status Loss Stereotyping Isolation Enacted Stigma Anticipated Stigma Internalized Stigma Social power Cultural power Legal power Public health power Structural Discrimination Self Discrimination Individual Discrimination

11. Multi-Dimensional Continuum of Care for HIV Prevention, Diagnosis & Treatment Macro-level – Public Health and Health Care Infrastructure Systems Health Care System Public Health System Meso-level – Testing, Referral, Treatment and Community Mobilization Networks Care Delivery Networks Prevention Networks Testing Networks Youth Care Networks Adult Care Networks Internalized Stigma Micro-level – Providers/Clients/Clinics Prevention Services Services Transition services Case management and retention services LTC services Testing services No Transmission Risk Reduced Trans-mission Risk Reduced Transmission Risk? Greatest Transmission Risk Less Transmission Risk Least Transmission Risk Retention in Care RIC Adult Care Engagement in Care EIC Linkage to Care LTC Infection Care Milestones Timeline Years Months to Years Days Months Years Lifelong Risk behaviors Prevention behaviorsPrEP (Vaccines) HIV test Results Adult Health Care Targets Secondary Prevention Adherence Disclosure Undetectable Viral Load Appointment Adherence ART Initiation & Adherence HIV test

12. Internalized stigma and HIV testing • Fear of results • Lack of perceived risk • Reluctance to disclose Nelson et al. J Urban Health, 2010

13. Multi-Dimensional Continuum of Care for HIV Prevention, Diagnosis & Treatment Macro-level – Public Health and Health Care Infrastructure Systems Health Care System Public Health System Internalized Stigma Meso-level – Testing, Referral, Treatment and Community Mobilization Networks Care Delivery Networks Prevention Networks Testing Networks Youth Care Networks Adult Care Networks Micro-level – Providers/Clients/Clinics Prevention Services Services Transition services Case management and retention services LTC services Testing services No Transmission Risk Reduced Trans-mission Risk Reduced Transmission Risk? Greatest Transmission Risk Less Transmission Risk Least Transmission Risk Retention in Care RIC Adult Care Engagement in Care EIC Linkage to Care LTC Infection Care Milestones Timeline Years Months to Years Days Months Years Lifelong Risk behaviors Prevention behaviorsPrEP (Vaccines) HIV test Results Adult Health Care Targets Secondary Prevention Adherence Disclosure Undetectable Viral Load Appointment Adherence ART Initiation & Adherence HIV test

14. 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)

15. Institutional and Structural Discrimination, by stage of testing experience

16. HIV Continuum of Care, Stigma, and MicroaggressionsTranslation 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

17. 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

18. Multi-Dimensional Continuum of Care for HIV Prevention, Diagnosis & Treatment Macro-level – Public Health and Health Care Infrastructure Systems Health Care System Public Health System Meso-level – Testing, Referral, Treatment and Community Mobilization Networks Care Delivery Networks Prevention Networks Testing Networks Youth Care Networks Adult Care Networks Internalized Stigma Micro-level – Providers/Clients/Clinics Prevention Services Services Transition services Case management and retention services LTC services Testing services No Transmission Risk Reduced Trans-mission Risk Reduced Transmission Risk? Greatest Transmission Risk Less Transmission Risk Least Transmission Risk Retention in Care RIC Adult Care Engagement in Care EIC Linkage to Care LTC Infection Care Milestones Timeline Years Months to Years Days Months Years Lifelong Risk behaviors Prevention behaviorsPrEP (Vaccines) HIV test Results Adult Health Care Targets Secondary Prevention Adherence Disclosure Undetectable Viral Load Appointment Adherence ART Initiation & Adherence HIV test

19. HIV Linkage to CareStigma management and complex practice Linkage Providers Linkage Systems Linkage Practices Fortenberry et al., J Adolesc Health 2012

20. Multi-Dimensional Continuum of Care for HIV Prevention, Diagnosis & Treatment Macro-level – Public Health and Health Care Infrastructure Systems Health Care System Public Health System Meso-level – Testing, Referral, Treatment and Community Mobilization Networks Care Delivery Networks Prevention Networks Testing Networks Youth Care Networks Adult Care Networks Internalized Stigma Micro-level – Providers/Clients/Clinics Prevention Services Services Transition services Case management and retention services LTC services Testing services No Transmission Risk Reduced Trans-mission Risk Reduced Transmission Risk? Greatest Transmission Risk Less Transmission Risk Least Transmission Risk Retention in Care RIC Adult Care Engagement in Care EIC Linkage to Care LTC Infection Care Milestones Timeline Years Months to Years Days Months Years Lifelong Risk behaviors Prevention behaviorsPrEP (Vaccines) HIV test Results Adult Health Care Targets Secondary Prevention Adherence Disclosure Undetectable Viral Load Appointment Adherence ART Initiation & Adherence HIV test

21. Changes in internalized stigma as a function of ART Tsai et al. AIDS Behav(2013)

22. Mixed effects model for Clinic/Provider Predictors of Engagement in Care Philben et al. AIDS Care (in press)

23. Multi-Dimensional Continuum of Care for HIV Prevention, Diagnosis & Treatment Macro-level – Public Health and Health Care Infrastructure Systems Health Care System Public Health System Internalized Stigma Meso-level – Testing, Referral, Treatment and Community Mobilization Networks Care Delivery Networks Prevention Networks Testing Networks Youth Care Networks Adult Care Networks Micro-level – Providers/Clients/Clinics Prevention Services Services Transition services Case management and retention services LTC services Testing services No Transmission Risk Reduced Trans-mission Risk Reduced Transmission Risk? Greatest Transmission Risk Less Transmission Risk Least Transmission Risk Retention in Care RIC Adult Care Engagement in Care EIC Linkage to Care LTC Infection Care Milestones Timeline Years Months to Years Days Months Years Lifelong Risk behaviors Prevention behaviorsPrEP (Vaccines) HIV test Results Adult Health Care Targets Secondary Prevention Adherence Disclosure Undetectable Viral Load Appointment Adherence ART Initiation & Adherence HIV test

24. Community Mobilization and Structural Change Core Risk Factors Intervention Intermediate Outcomes Ultimate Outcomes • 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 Structural Changes Mental health services Substance use treatment Integrated HIV/STI SVC Youth-appropriate social venues Youth-friendly prevention Reduced HIV Incidence Community Mobilization Intervention HIV Acquisition – risk networks Number of sex partners High-risk vs low-risk partners Partner concurrency Internalized Stigma LTC Committee & engagement of LHD LTC Structural Changes Simplified eligibility Patient navigator Integrated treatment services Structural stigma HIV Transmission – Linkage to care Stigma Disclosure Eligibility Access Improved LTC, EIC and RIC • 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

26. Stigma and the HIV Continuum of CareSummary • 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