Disclosure of HIV status demanded in 31 US states, but many people don't tell before sex

This article is more than 21 years old.

The overwhelming majority of people with HIV in the western United States do not engage in sexual activity which poses any real risk of onward HIV transmission, according to a study published in the June 2003 edition of the American Journal of Public Health.

However, rather than stressing the safer sexual activities of the patients in the study, the authors prefer to highlight that 13% of their study sample were having unprotected sex without first disclosing their HIV status, and condemn as “morally indefensible” sexual activity with a condom which did not involve prior HIV disclosure.

The importance of disclosure to HIV prevention is a controversial subject, with little evidence that disclosure reduces either the amount of unprotected sex between people of different HIV status or the overall prevalence of HIV infection.

Glossary

disclosure

In HIV, refers to the act of telling another person that you have HIV. Many people find this term stigmatising as it suggests information which is normally kept secret. The terms ‘telling’ or ‘sharing’ are more neutral.

oral

Refers to the mouth, for example a medicine taken by mouth.

stigma

Social attitudes that suggest that having a particular illness or being in a particular situation is something to be ashamed of. Stigma can be questioned and challenged.

sample

Studies aim to give information that will be applicable to a large group of people (e.g. adults with diagnosed HIV in the UK). Because it is impractical to conduct a study with such a large group, only a sub-group (a sample) takes part in a study. This isn’t a problem as long as the characteristics of the sample are similar to those of the wider group (e.g. in terms of age, gender, CD4 count and years since diagnosis).

insertive

Insertive anal intercourse refers to the act of penetration during anal intercourse. The insertive partner is the ‘top’. 

In recent years disclosure has become a political as well as health promotion issue in the US, and 31 US states now have laws insisting that a person with HIV disclose their HIV status prior to having sex and a small number of people are now serving lengthy jail sentences after failing to tell their sexual partners of their HIV status - even if it did not result in HIV infection.

Investigators at the University of San Francisco wished to see how many HAART treated patients were having sex without disclosing their health status. They also wished to establish the amount of unprotected anal and vaginal sex which was occurring without disclosure within the context of both regular relationships and casual sexual encounters. The study ran from September to December 1998 and involved 1421 patients enrolled in the HIV Cost and Services Utilization Study (HCSUS). The study population included 606 gay and bisexual men, 287 heterosexual men and 504 heterosexual women.

Patients participated in face-to-face interviews about their sexual activity over the past six months. Patients who were sexually active were then asked to answer questions about their last five sexual contacts. The questions concerned their partners’ HIV status; frequency of anal, oral, and vaginal sex; condom use; and disclosure of HIV status.

The investigators found that the over-whelming majority of patients were either not having any sex, or were taking other measures to minimise the risk of HIV transmission, including condom use and for gay men, not being the insertive partner in anal intercourse.

Regarding disclosure of HIV status, the investigators found that 29% of gay men, 41% of heterosexual men and 48% of heterosexual women always told their partners that they were HIV-positive. However, 42% of gay men, 19% of heterosexual men and 17% of heterosexual women had some form of sex without disclosure. Further, 16% of gay men had unprotected anal sex without disclosure, and 5% of heterosexual men and 7% of heterosexual women had unprotected anal or vaginal sex without disclosure.

Disclosure was least frequent in casual sexual encounters amongst gay men (35% reported non-disclosure).

The investigators also found that most of the sex without disclosure was happening with partners of unknown HIV-status, implying that there was mutual non-disclosure.

On the basis of their findings the investigators estimated that at least 17,400 HIV-positive gay men, 2,000 HIV infected heterosexual men and 2,900 heterosexual women with HIV had unprotected sex in the US within the six month reporting period of the study. “These numbers are large enough to suggest that substantial numbers of new HIV infections occur among partners of HIVinfected persons who do not disclose their status” suggest the investigators.

Gay men were the group most likely not to disclose their HIV status. The investigators suggest that this could be a result of targeted HIV prevention campaigns which encouraged gay men to regard all their sexual contacts as potentially HIV-positive, and as a result gay men have come to regard disclosure as optional.

The investigators also condemn as morally indefensible people having oral sex or protected anal or vaginal sex without disclosure. They describe this as a unilateral risk reduction strategy which does not allow the sexual partners of people with HIV to make informed choices about what level of risk is acceptable.

Agreements within gay relationships to have unprotected sex are also attacked by the investigators as they “did not meet our definition of exclusivity” and were often “short-term.”

Although encouraging disclosure, the investigators do admit that barriers exist including stigma, fear of rejection, discrimination, and the risk of violence, and that campaigns encouraging disclosure are likely to fail unless they address these very real concerns.

Editorial comment

It is unusual for a scientific paper to describe behaviour as “morally indefensible”. It is shocking that investigators should make this comment about non-disclosure in the context of safer sex, behaviour which has been credited with preventing hundreds of thousands if not millions of HIV infections in the US (see reference below).

Many people involved in HIV prevention will find this paper problematic for its ideological support for the disclosure of HIV status, even though, as the investigators themselves admit, there is no evidence that disclosure has any impact on sexual risk behaviour. The investigator’s reference to the (very rare) failure of condoms as a reason for disclosure before even safer sexual contacts seems influenced by the arguments of abstinence campaigners.

The investigators make some highly questionable assumptions about the contribution of non-disclosure to new HIV infections. The patients in their study were all taking HAART which substantially reduces HIV viral loads in blood and sexual fluids. Although people taking HAART cannot assume that they are no longer infectious, studies have shown that the infectivity of people taking HAART is substantially decreased.

A third of HIV cases in the US (and the UK) are undiagnosed, and legislation demanding disclosure, or moral pressure from health care professionals seem unlikely to reduce the pool of undiagnosed infections. This is a major public health concern, as people with undiagnosed HIV will not be accessing care and treatment and are likely to have higher viral loads in their sexual fluids and consequently be highly infectious and account for a substantial proportion of new HIV infections.

Encouraging people to ask their sexual partners about their HIV status is a questionable HIV prevention strategy, and could actually encourage high risk sexual behaviour between partners who believe themselves, erroneously to be HIV-negative.

Further information on this website

Bush administration censoring information on condoms because of ideology claim activists - news story November 2003

Condoms - factsheet

Condoms - comprehensive overview

References

Ciccarone DH et al. Sex without disclosure positive HIV serostatus in a US probability sample of person receiving medical care for HIV infection. American Journal of Public Health 93: 1-7, 2003.

Holtgrave D. Estimating the cost effectiveness and efficiency of US HIV prevention efforts using scenario snd cost effectiveness analysis. AIDS 16: 2357-2349, 2002.