Young gay men with HIV in the UK worry about disclosure, transmission and prosecution – older ones about confidence and sex

A large majority of gay men in the UK with HIV describe having one or more problems with sex, an analysis of a survey originally published in 2009 reveals.

Amongst other problems, the analysis of the 2009 What do you need? survey (Weatherburn), conducted by Sigma Research, finds “A large and singularly coherent problem of managing status disclosure to potential sexual partners, with its attendant risks of rejection (or worse) if disclosure occurs, and potential prosecution if it does not (but transmission does)”.

Although concern about these related risks were common in all the gay men who answered the What do you need? survey, it was young, recently diagnosed men for whom these were the most pressing issues, as well as men not on HIV treatment.

Although many older gay men also worried about these issues, concerns about poor self-image, loss of self-confidence, low libido and lack of sexual opportunity were of more concern to this age group.

The survey

What do you need? (WDYN) was the second survey with this title, the original having been conducted by Sigma Research in 2002. The data for the second survey were collected in the second half of 2007. It was compiled from people with HIV who answered and sent in questionnaire booklets that were distributed by sexual health clinics, local authorities and HIV service organisations (including NAM) and also from an online survey. Nearly 23,000 booklets were distributed (5000 to subscribers of HIV treatment update).

The survey received 1929 completed replies, a response rate of about 5%. Of 1777 valid replies, 1217 (68%) defined as gay or bisexual men. This represents approximately 5% of gay men diagnosed with HIV in the UK in 2007.

When compared with national HIV data from the SOPHID system, survey respondents were reasonably comparable with gay and bisexual men living with HIV in general, with the exception that fewer were non-white (13% in SOPHID versus only 5% in WDYN). Three-quarters (74%) were taking antiretroviral therapy (ART).

Problems with sex

WDYN asked a variety of questions about different aspects of living with HIV, but the present analysis only looks at those concerning sex; 1199 men provided complete answers on these topics. Seventy per cent (845) of respondents reported at least one problem with sex during the last year. The most common were loss of libido and poor self-image/self-confidence (44% of all respondents, 64% of those with at least one problem); too little sex (41% of all, 63% of those with problems); concern about transmitting HIV (37%/59%), fear of rejection by partners (35%/50%), fear of disclosing to partners (32%/46%), physical problems with penis or anus (28%/41%), and fear of prosecution for transmission (24%/35%).

Men who worried about disclosure, transmission and prosecution were significantly younger than average, and men with poor self-image or -confidence were older.

Men who were not taking ART were more likely to be concerned about disclosure than men on ART. Fifty-five per cent of those with at least one problem who were not on ART feared disclosing, as opposed to 42% of those on ART. Similarly 57.5% not on ART feared rejection versus 47% on ART and 66% versus 49% were worried about transmission.

Men diagnosed less than five years ago were also more likely to be worried about disclosure and transmission than men diagnosed more than five years ago.

‘Factor analysis’ is a way of seeing which concerns tended to cluster together. It found, unsurprisingly, that those who worried about disclosure were also very likely to be worried about rejection; they were also very likely to be worried about potential prosecution and transmitting HIV, and 50% more likely than average to be worried about low self-confidence.

Men who worried about low libido were also worried about other physical problems and with HIV treatment side-effects, and men who complained of too little or no opportunity for sex were, again, perhaps predictably, also likely to complain of low self-confidence. A small minority (4% of the whole group, 6% of those with at least one sexual problem) complained of too much sex; this was also associated with low self-confidence, and possibly indicates the proportion of respondents who had issues with sexual compulsion.

Solutions and conclusions

Over a third of men (36%) said their problem(s) had become worse over the last year. When asked what might help improve their problems, over a third said that some kind of one-to-one or group therapeutic support might help them address low self-esteem: One said “Feeling better about myself and not seeing myself as a dirty, infected bastard would help things.”

A quarter said that better public awareness about HIV would help them with disclosure without, as one said, “ostracism or public humiliation”, while a sixth said that clarity about the criminalisation of transmission would help: “Currently, all the pressure and responsibility is on me”, remarked one.

A quarter also expressed a need for good quality sex, whether that was addressing problems with relationships, sexual compulsivity or erection problems.

The researchers conclude: “like all homosexually active men, those with diagnosed HIV have a right to the best sex with the least harm."

“Meeting their sexual needs, helping them overcome issues of self-esteem or self-confidence will help them have more rewarding sex lives, while empowering them to negotiate sex more effectively and addressing HIV-related stigma may also facilitate an environment in which onward transmission of HIV is less likely to occur.”