HIV Partner Notification and Serostatus Disclosure Jesse Clark, MD, MSc UCLA Geffen School of Medicine Department of Medicine, Division of Infectious Diseases

Notification and Disclosure  Partner Notification  Informing recent sexual partners of a new HIV diagnosis  Series of single events conducted during immediate post-diagnosis period when an individual is adjusting to their new HIV-positive identity  Serostatus Disclosure  Discussing HIV serostatus with new sexual partners  Pattern of long-term behavior encountered throughout lifetime

Why Is Notification/Disclosure Important?  Partner Notification  Important for identifying new cases of undiagnosed HIV infection  Targets case-finding efforts to sexual networks at high risk for HIV/STI transmission  Promotes early diagnosis and entry into care for HIV-positive partners  Disclosure  Important for prevention of HIV transmission within sexual partnerships  Open discussion of HIV status (positive or negative) allows acknowledgement of potential risks for HIV/STIs and mutually determined strategies to reduce risk  Harm reduction strategies (serosorting, seropositioning) dependent on open, accurate disclosure of HIV status

Stigma and Disclosure  Stigma: “An attribute that is deeply discrediting”  “Discredited” vs. “Discreditable” and “Passing”  Cultural meanings of medical facts  “I burnt my lip”  “I have a cold sore”  “I have herpes”  “I have a primary syphilis lesion”  Social implications of HIV dx  HIV=Gay/MSM/IDU  Infidelity/Promiscuity  Moral turpitude vs. “Innocent victim”

Effects of Stigma  Causes harm to HIV+ individuals and their families  Discrimination and harassment  Efforts to hide dx lead to problems accessing and maintaining HIV care  Emotional pain and stress  Inhibits open discussion of HIV/AIDS  Decreased rates of HIV testing  Decreased discussion of HIV status between partners  Inhibits condom use (in settings where unprotected intercourse is norm)

Addressing Stigma as a Social Problem  Stigma is a self-perpetuating cycle  Stigma inhibits disclosure; Non-disclosure promotes social isolation of people with HIV; Lack of public recognition maintains perception of HIV as something hidden, shameful, and other; (Silence=Death)  Open discussion of HIV/AIDS as a routine problem  End of “AIDS Exceptionalism”  Attention to contributing factors including social marginalization, homophobia, discrimination  Collective empowerment of people living with HIV

Incentives to Partner Notification/Disclosure  To protect the health of partner  To maintain trust/honesty within partnership  To obtain social or emotional support from partner  To obtain financial support from partner  To protect the health of the community (“break the chain of transmission”)

Barriers to Partner Notification/Disclosure  Low perceived importance of notification/disclosure  Unsupported assumptions about partner HIV status  Fear  Personal  Shame, rejection, abandonment  Violence  Social  Public disclosure of private information  Stigma and discrimination  Lack of contact information  No contact information (anonymous partner)  Limited contact information (e.g., screen name or address only)

Partnership Contexts of Notification and Disclosure  Partnership characteristics important in decisions related to notification and disclosure  Partner gender/sexual identity  Partnership type  Length of partnership  Trust and commitment within partnership  Perceived monogamy/infidelity  Perceived source of infection and/or perceived likelihood of transmission to partner

Partner-Specific Strategies for Notification/Disclosure  Partnership characteristics also define how HIV is or is not discussed with the partner  Stable Partners  Face-to-Face notification/disclosure common  Disclosure often in context of established, committed relationship  Casual Partners  Notification less common, more often through indirect methods (provider notification, anonymous internet systems)  Disclosure highly dependent on social norms  Commercial Partners  Notification and disclosure rare due to potential loss of income  Anonymous Partners  Unable to be notified; Disclosure dependent on social norms and method of contact (e.g., internet profile may specify individual’s HIV status prior to any contact)

Tools to Support Partner Notification  Post-Test Counseling  Emphasize importance of notification and disclosure  Develop specific strategies for notification of recent partners  Role-play notification and/or disclosure scenarios  Referral Cards  Printed information on HIV/STI for patient to deliver to partner  Provides a practical tool to support face-to-face notification  May include “Fast-Track” clinic referral  Internet/SMS-Based Notification  Potential for disclosure of HIV status in profile  Allows notification of partners with limited contact information  Anonymous notification  Provides links to education/testing resources in notification message

Partner Notification Counseling  Intervention at a critical point in the individual’s decision-making process  Potential to emphasize importance of notification, develop partner-specific notification decisions and strategies, and address potential barriers to notification  Provides a bridge to future serostatus disclosure practices

Partner Notification Counseling: Do’s and Don’ts  DO:  Emphasize the primacy of the individual, their needs, and their safety while also stating the importance of notification for themselves and their partners  Discuss general attitudes or perceptions about notification before discussing partner-specific decisions  Outline recent sexual partnerships and use these as a structure to guide notification decisions  Develop a specific strategy for how each named partner will (or will not) be notified (Face to face, internet, SMS, Provider, etc.)  Identify potential barriers to notification of each partner  Role-play notification process (with and without complications) to help “embody” the experience

 DON’T:  Treat the person like they have done something wrong and need to compensate for their mistakes  Ignore the fact that this person has just received information that could profoundly change their life  Ignore the importance of the individual’s autonomy in making partner notification decisions  Ignore the importance of their safety and well-being in making notification decisions

Serostatus Disclosure Counseling  Continuation of initial partner notification counseling interaction  Concept introduced during partner notification counseling and then developed during subsequent interactions  Emphasizes disclosure as a lifelong series of context- specific decisions and individual interactions  Uses longitudinal experiences as a framework to structure discussions about serostatus disclosure  Addresses disclosure as one component of a comprehensive HIV/STI prevention plan

Role-Playing Scenarios  Patrick, a 31 year old gay male, has just been diagnosed with HIV infection and is discussing with the counselor whether/how to tell his recent partner(s)  Jane, a 24 year old heterosexual female, has just been diagnosed with HIV infection and is discussing with the counselor whether/how to tell her husband  Jose, a 19 year old bisexual male, is discussing with his physician whether/how to discuss his HIV- positive serostatus with his sexual partner(s)