Important note: Information in this article was accurate in June 2001. The state of the art may have changed since the publication date. In the May issue of the Newsletter, I discussed two small but intensive studies on the relationship between disclosure of one's HIV+ serostatus and the practice of protected sex. The first study found a substantial difference in disclosure depending on type of partner: within three months after learning they were positive, 89% of the men had disclosed this status to their primary sexual partners, but only 34% had disclosed to their casual sex partners. However, when the study looked at how many had consistently practiced protection for potentially risky sex, there was not much difference between those who had disclosed and those who had not.
Among those with primary partners, the number who did not disclose was so small that statistical comparison of condom use was not possible between disclosers and non-disclosers. (The small number of non-disclosers reported condom use every time whereas only 50% of the disclosers who fucked their primary partners reported consistent condom use, and 70% of the disclosers who got fucked; but we do not know the serostatus of the partners so we cannot determine how many if any of the inconsistent condom users were actually being risky.) With casual partners, 67% of disclosers (6 of 9) reported consistent condom use when fucking compared to 43% (6 of 14) non-disclosers. However the small numbers mean this difference, while apparently substantial, could be due to chance, and thus we cannot call the difference significant.
The other study, done in Los Angeles, also found that there was no significant difference in the practice of protected sex between disclosers (78% reported consistent safer sex) and non-disclosers (of whom 73% said they were consistently safe). Both studies support three propositions:
A nationally representative sample of people in care for HIV (including gay and bisexual men, heterosexual men, and heterosexual, bisexual and lesbian women) was interviewed in 1998 about their most recent sexual partners in the preceding six months. The reported practice of unprotected anal or vaginal sex without disclosure was 16% for gay and bisexual men, 5% for heterosexual men and 6.5% for women. Among the gay men, nearly all who had any unprotected sex without disclosure had such with casual rather than regular partners. The other groups were fairly balanced between steady and casual partners in their reported unprotected sex with ejaculation.
Looking at the data another way, by the proportion who had engaged in unprotected anal or vaginal sex to the point of ejaculation inside with a serodiscordant partner, whether disclosed or not, was 8.5% for gay/bi men, 4.2% for hetero men and 11.1% for women. These proportions are very small, and the majority of the people had disclosed their status. Just 2.0% of the gay and bisexual men had had insertive anal sex with ejaculation with a negative partner without disclosure, and just 2.6% of the heterosexual men reported the same for vaginal sex. Just 2.9% of the women had engaged in unprotected vaginal or anal sex with a negative partner without disclosure.
This study would indicate that the proportion of positive people engaging in sex with negative partners without disclosure is small, though not insignificant. The proportions may underestimate the true proportion in the whole HIV population, however, because this study included mostly people with an AIDS diagnosis as of early 1996 and did not include those who are not aware of their HIV status or are not in care.
The Seropositive Urban Men's Study (SUMS), sponsored by the CDC, interviewed 450 HIV+ gay and bisexual men of representative race, ethnicity, age and social class in San Francisco and New York City in 1997 and 1998. There are many interesting findings in this study, but for now I am examining just the results concerning potentially risky sex and its relationship to disclosure. Overall, in the prior three months, 22% of the participants reported unprotected insertive anal intercourse (fucking) with one or more negative or unknown-status partners, 29% reported unprotected receptive anal intercourse (getting fucked) with such partners and 57% reported unprotected insertive oral sex (getting blown).
This same group disagreed about the importance of disclosure to sexual partners, not surprisingly. Asked if they agreed or disagreed with the statement, "it is not necessary for me to disclose my HIV status if I only have safer sex," 42% agreed, 22% were unsure and 37% disagreed. Regarding the statement, “I have a responsibility to let people I am going to have sex with know that I am HIV+," 51% agreed, 26% were unsure and 24% disagreed. Pertaining to intent to disclose in the future, participants were asked about the statement, “I plan on telling my HIV status to all of my new partners before we have sex." Forty percent (40%) agreed, 27% were unsure and 33% disagreed.
What about actual practice in the past three months? For those who had a main partner, 93% had disclosed their status. Among non-main partners, overall the men disclosed to 44% of non-main partners: 22% had disclosed to all non-main partners, 33% to some and 45% to none.
What was the connection between disclosure and practice of safer sex? Looking just at that 22% of the men who had engaged in the riskiest form of sex, unprotected fucking of someone of negative or unknown status, of those who had disclosed to all non-main partners, 40% had practiced unprotected fucking, compared to 59% of those who disclosed to some non-main partners and 42% of those who had disclosed to none of their non-main partners. So once again, the relationship between disclosure and practice of risky sex is not linear or clear cut.
It is clear, especially from this last intensive study, which included in-depth interviews as well as survey questionnaires, that disclosure is a difficult issue for many HIV+ gay and bisexual men. Most positive men disclose to their main partners, but many do not disclose to non-main partners (perhaps largely synonymous with tricks," perhaps mostly anonymous and/or brief encounters).
Disclosure does not necessarily reduce risk. At least half of those who do not disclose practice protected sex, at least for anal sex. On the other hand, as the Gary Marks study discussed in the last issue showed, about half of those who practice unprotected risky sex did disclose their positive status to their at-risk partners.
I believe that disclosure should be encouraged for both ethical reasons (even protection can fail) and for reasons of personal wholeness and integrity (we are likelier to be able to find real intimacy, and enjoy carnal pleasure to the fullest, if our actions to get them are rooted in our real and whole selves, without deception, guilt, or artifice). I suspect that the fear of disclosure is itself a barrier to seeking the most meaningful connections and relationships possible. I mean, there are those who love bathhouse, sex-club, T room and Vaseline Alley sex as a high-order pleasure and one to which its typical anonymity is central. More power to you! At the same time I think we must all agree that we individually and collectively have a responsibility to make those encounters safe, to not let this source of pleasure continue to be a source of sustaining this damned epidemic.
For others I speak with, though, these encounters at best provide a short-lived high, and for some, end up resulting in feelings of isolation and even self-loathing or reproach. There are a variety of reasons we could each give as to why those of us who feel thusly still frequent these venues. One among these reasons, though, is because they give positive people a way to find and experience sexual pleasure and human intimate connection without facing the emotional and practical difficulties of disclosure, because disclosure is certainly uncommon in such venues.
Whether or not fear or anxiety about disclosure lead us to limit our sex lives to certain anonymous venues, many find this anxiety a barrier to reaching out for intimacy of all sorts, from forming new close friendships to finding a potential lover. "When am I going to have 'The Talk' and what is his/her reaction going to be?"
Community organizations sometimes sponsor forums on disclosure, and some support groups probably discuss it fairly frequently, but my feeling is that we have still not reached the point of comfort at a community level, for finding ethical and practical norms for positive and negative members of our communities within which we can all have a chance of living well. I invite continued discussion, and certainly Being Alive would welcome your suggestions as to ways to advance this discourse.
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