The overwhelming majority of gay men and Africans with HIV in London have disclosed their HIV status to at least one other person, according to a study published in the April 1st edition of the Journal of Acquired Immune Deficiency Syndromes. However, the investigators found that patterns of disclosure varied significantly between gay men and Africans, with African men and women having lower levels of disclosure overall and also being less likely to disclose to their current partner, family, friends, employer or work colleagues.
Disclosure of HIV status can have both benefits and risks. The benefits include increased support and access to services, and there is even some evidence that people who are open about their HIV status have higher CD4 cell counts. But on the down side, disclosure can have risks, including potential discrimination, and loss of support.
Legal issues around disclosure have changed in the UK in recent years. In 2005 the Disability Discrimination Act was amended to provide important protections to people with HIV. But to access these legal benefits it is necessary for disclosure of HIV status to have taken place. There have also been a number of convictions for the “reckless” transmission of HIV. In all these cases the convicted individual did not disclose their HIV infection to their sexual partner.
Despite these changes there is limited information on HIV disclosure in the UK. Investigators from the City University in London designed a study to find out the extent of disclosure amongst people with HIV, to whom they disclosed, and the role of ethnicity in disclosure.
Between 2004 and 2005 a total of 1687 individuals attending HIV outpatient clinics in north east London submitted questionnaires. As nearly all HIV-positive patients in the UK access HIV care from specialist NHS services the sample was broadly representative of HIV-positive patients in the UK. The investigators restricted their analysis to gay men and African women and African heterosexual men. The numbers of patients from other groups were too small for analysis.
Overall levels of disclosure
Most patients (88%) had told at least one other person about their HIV status. White gay men were the group most likely to have told at least one person (95%) and African heterosexual men the least likely (77%). The investigators found that African men and women were significantly less likely to disclose to at least one person than gay men of any ethnicity (p < 0.001).
Disclosure to partners
Of the patients who were in a relationship, 86% of white gay men and 85% of ethnic minority gay men had disclosed to their partner. This contrasted to 65% of African men and 60% of African women who had told their partner that they had HIV. Once again, the differences in levels of disclosure between gay men and heterosexual Africans was statistically significant (p < 0.001).
Of the 46 white gay men who had not disclosed to their partner, six reported unprotected sex with their partner in the previous three months. One partner was reported to be HIV-negative. Of the eight ethnic minority gay men who had not disclosed to their partner, two reported unprotected sex with their partner. A total of 52 heterosexual African men had not disclosed and five reported unprotected sex with their partner, with one partner being HIV-negative. And of the 108 black heterosexual women who had not disclosed, 17 said they had had unprotected sex with their partner, with three of these partners being HIV-negative and nine of unknown HIV status. The investigators’ analysis showed that African heterosexual men and women were significantly more likely than gay men to report unprotected sex with a partner who was HIV-negative or of unknown HIV status to whom they had not disclosed (p < 0.01).
Disclosure to family
White gay men were also more likely to have disclosed to at least one of their parents (42%) than ethnic minority gay men (19%), African heterosexual men (16%) and African heterosexual women (19%) (p < 0.001). Factors associated with disclosure to parents included being unemployed, number of years since diagnosis with HIV, younger age, and having experienced HIV-related discrimination.
Gay men overall were also more likely to have disclosed to a sibling than heterosexual African men and women (p < 0.05). Of the individuals with children a third of gay men, 20% of African heterosexual women and 10% of African heterosexual men had disclosed their HIV status to some or all of them. The difference between white gay men and these other groups was statistically significant (p < 0.001).
Disclosure to friends
More white gay men (81%) had disclosed to friends than minority gay men (67%) and African heterosexual men (22%) and women (31%). The investigators believe that migration could be an explanation for the low levels of disclosure amongst Africans.
Disclosure at work
Of the patients in employment, only 22% had told their employer that they were HIV-positive. Once gain, levels of disclosure were higher amongst white gay men (33%) than ethic minority gay men (16%) and African heterosexual men and women (10%) (p < 0.001). These findings were broadly similar when the investigators stratified them according to security of immigration status.
White gay men were also more likely to have disclosed to their colleagues than other groups (p < 0.001).
“Our investigation highlights the continuing challenge of HIV disclosure presents, particularly for black heterosexual men and women living in the UK, a group that reports high levels of HIV-related stigma and discrimination”, comment the investigators.
Elford J et al. Disclosure of HIV status. The role of ethnicity among people living with HIV in London. J Acquir Immune Defic Syndr 47: 514 – 521, 2008.