Don’t ask, Don’t Tell: Patterns of HIV Disclosure Among HIV Positive Men Who Have Sex with Men (MSM) Practicing High Risk Behavior In Seattle and Los Angeles P. M. Gorbach 1, J. Galea 1, B. Amani 1, A. Shin 1, C. Celum 2, H. Handsfield 2, M. Golden 2 1 University of California, Los Angeles, CA 2 University of Washington, Seattle WA

HIV Disclosure: Background Many new cases of STIs such as syphilis are among HIV positive men (60% in LA – 70% in Seattle). Continuing high incidence of STIs including HIV in California suggests that HIV positive MSM may not disclose their HIV status prior to having unprotected sex with partners of unknown status – thus facilitating transmission. More information is needed on HIV disclosure practices. We designed a study of HIV positive MSM thought to be at high risk for transmitting HIV to others in order to identify barriers to HIV disclosure that might be amenable to intervention.

Definition: Disclosure “Disclosure” was defined as verbally revealing one’s HIV- Positive status to a prospective sexual partner before engaging in sexual acts.

Methods In 2003, 55 HIV-Positive MSM (24 in Seattle, 31 in LA) reporting recent STI or unprotected anal intercourse with serostatus discordant or unknown partners and a bacterial STD (including syphilis, gonorrhea, chlamydia and non- gonococcal urethritis) were recruited from LA and Seattle STD clinics. Three male interviewers trained in qualitative interview techniques conducted hour-long interviews about key aspects of potential new interventions, of which a section on HIV-Disclosure was a part. Interviews were tape-recorded, transcribed verbatim, coded and content analyzed for themes using The Ethnograph™ v5.08. Themes were independently derived by 2 of the investigators.

Demographics n = 55 13% 17% Seattle N = 24 LA n = 31 Combined n = 55 Age mean (range)39 (30-52)38 (24-48)38.5 (24-52) Race/ethnicity Cauc Afr Amer Hisp/Lat Asian Oth 17 (71%) 4 (17%) 1 (4%) 2 (8%) 0 (0%) 10 (32%) 16 (52%) 4 (13%) 0 (0%) 1 (3%) 27 (49%) 20 (36%) 5 (9%) 2 (4%) 1 (2%) Mean years since DX with HIV697.5 Education – Highest Level < HS Trade HS College (BA) MA/PhD 1 (4%) 4 (17%) 12 (50%) 4 (17%) 3 (12%) 3 (10%) 16 (52%) 5 (16%) 6 (19%) 1 (3%) 4 (7%) 20 (36%) 17 (31%) 10 (18%) 4 (8%)

A Continuum of Disclosure Factors that influence HIV disclosure for MSM who disclose at different rates Disclosure much less likely Disclosure much more likely Sometimes Disclosure Nobody’s Business Denial Undetectable VL Just Sex Shared Responsibility Rejection Drugs Public Place More than “Just Sex” I am responsible Private Place Knew his Status He asked me Jail

Nobody’s Business, Denial Never Disclosure “This is a medical condition that I’ve got and why should I tell everybody?” (43/W/SEA) “Me in denial about the status, me not want nobody to know. Ruin me image.” (41/AA/LA)

Rejection, Place, Meds Disclosure Unlikely “I just….sometimes it don't always pay to be –to tell people -- because a lot of times it just runs them off, you know…?”(42/W/LA) “Total anonymity in a bathhouse or the park, you’re not going, ‘oh, before you put your mouth there you should know [that I’m positive].” (40/W/SEA) “There was no conversation and I ended up fucking him – again, the false sense of security that my viral load is zero. I don’t feel too bad about it. (49/AS/SEA) “…this guy was so hot I wasn’t going to talk about anything because I didn’t want to blow my chance to have sex with him.”( 41/W/SEA)

Drugs, Just Sex, Type of Sex Disclosure Unlikely “The crystal meth impaired my judgment, and all I could care about was just getting laid…” (40/W/LA) “I feel like it wasn't even important because I don't really know him and he doesn't really me. And all it's about… is just a sexual thing.” (41/AA/LA) “Being the receptive anal partner, probably less infective, less of a concern.” (49/AS/SEA)

Shared Responsibility Sometimes Disclosure “It’s a street…they should ask as well as I should tell.” (30/W/SEA) “We have responsibility in the sense that, yes, we should tell them…but they have the responsibility to ask. It’s a thing. It just depends on who initiates it.” (35/AA/LA) “I am usually expecting someone else to say something, and if they don’t, I assume that they are positive or that it does not make any difference to him.” (52/W/SEA)

More than sex, Responsibility Disclosure More Likely “…If you make a bond on an emotional level, I certainly feel more obligated to divulge my status because I might want to continue a relationship with them.” (35/W/SEA) “I don't think it's fair and I think they should have an option to have sex or not to have sex…don't want to ruin his life…” (45/AA/LA)

Always Disclosure Disclosure MORE Likely “There is a legal issue. You have to.” (44/W/SEA) “Like I said, it is considered murder if you slept with somebody then that person had one time thing with you and he goes and gets (it) and he knows who you are, it is a risk, it's a felony rap, it's a murder rap on you, you know?” (44/H/LA)

Indirect Disclosure 14 respondents let their sex partners know about their HIV status without actually talking about it : making antiretroviral medications visible, indicating their HIV status on a website’s personal profile, by saying that they live in Public Housing for PLWA, by having a “+” tattoo, or having HIV related displayed information in their house. + GBM, 27, 5’7, 140#, HIV+ Lets SP see Meds “Positive” Tattoo Website Personal Profile

Disclosure: Rarely an All-Or-None Issue The decision to disclose one’s HIV status is complicated and dependent on multiple and often competing factors. Only 2 men said they never disclosed their HIV status to prospective sex partners. 7 men said the always disclose their HIV status to prospective sex partners.

Conclusions For the MSM in this study the decision to disclose one’s HIV status disclosure was rarely an all-or-none issue but was complicated and dependent on multiple conditions. Only 2 men never disclosed their HIV status to sex partners, 7 men always disclosed HIV status to sex partners. Others did or did not disclose based on competing emotional, situational, and legal issues. Many MSM felt partners should ask for HIV status; many assumed if a partner does not ask, he must be positive. Many expressed an expectation to be asked or they won’t tell. Some MSM avoided disclosing by not having risky sex. Awareness of legal implications of lack of disclosure for transmission of HIV among MSM influenced some to disclose more often. Only in Seattle was low viral load a rationale for non-disclosure: more educated HIV+ population?

Implications HIV Negative MSM need to be counseled to ask about a partner’s status and not assume men who are HIV positive will tell them before sex. Disclosure is a shared responsibility. Meth is a problem!!! Large numbers of men are using methamphetamines during sex – when under the influence of these drugs men report not only having a lot of sex, they have a lot of unprotected sex, and many of those who are HIV positive are doing this without telling their partners of their status. Although we thought that using fear doesn’t work as a prevention strategy – our findings suggest if more people were aware that they could possibly be prosecuted for infecting others with HIV this might enhance a sense of responsibility and increase the likelihood those who are HIV positive will disclose to partners before sex. We will continue to have new cases of STDs and HIV along the West Coast until more people talk about HIV: both HIV positive MSM need to disclose their HIV status to partners and HIV negative men need to ask more.

Cielo Fernandez-Ortega John Copeland Michael Westrick Mark Fleming LAGLC for advertising the study and providing interview space. LA Shanti for also providing interview space. UARP Idea Award: ID02-LA-023: “Developing Interventions for Men Who Have Sex Men with HIV and STDs in Los Angeles” Acknowledgements