HIV Partner Notification and Serostatus DisclosureJesse Clark, MD, MScUCLA Geffen School of MedicineDepartment of Medicine, Division of Infectious Diseases

Notification and DisclosurePartner 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 StigmaCauses 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/DisclosureTo 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 email address

only)

Partnership Contexts of Notification and DisclosurePartnership 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 ScenariosPatrick, 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)