Sexual satisfaction among people living with HIV in the era of biomedical prevention: enduring impacts of HIV-related stigma?

Introduction

The World Health Organization (WHO) defines sexual health in terms that emphasise the importance of sexual satisfaction and wellbeing rather than just the absence of infection or disease.¹ Sex is an integral part of human life, encompassing a wide spectrum of emotional, psychological, and physical dimensions. However, for people living with HIV (PLHIV), sexual satisfaction can often become a complex and challenging aspect of their lives.² Studies on sexual satisfaction among PLHIV are scarce, although the existing literature base indicates that up to half of all PLHIV express dissatisfaction with their sex lives.^3–6 In this respect, sexual satisfaction can encompass many aspects of sex such as sexual desire, orgasms, and satisfaction during sexual activity.⁴

The reasons why many PLHIV experience lower levels of sexual satisfaction are complex and multifaceted. Research suggests that many PLHIV experience loneliness or social isolation,⁷ which for many can result in avoidance of sex and/or avoidance of sexual or intimate relationships. Although reduced satisfaction could be due to less sex in absolute terms, the ways this plays out may differ according to cultural or demographic differences. For example, nationally representative research in Sweden has indicated that sexual inactivity among men living with HIV is predictive of sexual dissatisfaction.⁶ However, a recent study among women living with HIV demonstrated that some participants who were in relationships in which they had no sex reported higher levels of sexual satisfaction than women who were in sexual relationships.³ This indicates that, for some PLHIV, sexual satisfaction may be more closely related to feelings of intimacy or partnership rather than experiences of sexual intercourse.

For PLHIV, sexual satisfaction may also relate to how desirable or ‘loveable’ they feel, or be an unwanted reminder of having HIV.⁸ This may have a negative impact on sexual wellbeing and satisfaction. Broader factors also appear to be barriers to sex, pleasure, and subsequent sexual satisfaction for PLHIV. A systematic review of five studies exploring factors associated with lower levels of sexual satisfaction among PLHIV identified treatment- and health-related impacts of HIV, demographic characteristics such as older age, psychological distress, and internalised stigma as negative predictors of sexual satisfaction.⁹ Other published work additionally identified orgasmic difficulties among women and perceptions of obligation to disclose HIV status among both men and women as predictive of sexual dissatisfaction.⁶

Fear of transmitting HIV to a sexual partner is also a significant reason why PLHIV may find sex stressful or anxiety provoking, thus reducing satisfaction. The vast majority of studies investigating predictors of sexual (dis)satisfaction among PLHIV collected data prior to 2016^6,9 and are temporally situated before the widescale roll out of PrEP and treatment as prevention/undetectable=untransmissible (U=U) messaging following large serodiscordant partners studies.^10,11 These advances have made it possible for PLHIV to engage in condomless intercourse without presenting any risk of sexual transmission of HIV to their partners. This has also shifted legal requirements regarding disclosure of HIV status to sexual partners in some jurisdictions in Australia so long as ‘reasonable precaution’ is taken to prevent transmission (such as viral undetectability) and has demonstrated promise in combating misinformation about HIV, increasing education about HIV transmission risk, and reducing experiences of HIV-related stigma (either internalised stigma or external stigma).¹² This change has had a marked impact on fear of onward HIV transmission among PLHIV. For example, recent work demonstrates changes in fear of onward HIV transmission among cross-sectional samples of PLHIV in Australia at four different time points: 1997, 2003, 2014, and 2018.¹³ A marked reduction in fear of onward HIV transmission was observed between 2014 and 2018, following the widespread emergence of U=U health messaging, with no statistically significant reduction between 1997 and 2014. Fear of onward HIV transmission among PLHIV was also seen to be negatively associated with knowledge about U=U.¹³ Although these findings are encouraging and speak to the importance of U=U in allaying concerns regarding sex between serodifferent partners for individuals living with HIV, this trend is not universally felt. A recent study demonstrated that, among a large sample of gay and bisexual men in Australia (including individuals not living with HIV), only 67% of participants believed in the accuracy of U=U despite the majority knowing what it was.¹⁴ Participants who were not living with HIV were also less likely to believe in the accuracy of U=U,¹⁴ which could be said to undermine the effectiveness of the messaging in reducing experiences of stigma and discrimination for PLHIV. However, onward transmission is only one dimension of sex and sexual satisfaction, and it is important to consider a wider spectrum of factors relevant to sexual satisfaction among PLHIV in the era of biomedical prevention and U=U; for example, experiences of stigma or avoidance of sex due to HIV status.

The aim of this study is to examine the extent of, and factors associated with, sexual satisfaction among PLHIV in Australia, including: (i) demographic characteristics and health, (ii) engagement with biomedical technologies that maintain health while also preventing transmission, such as knowledge of U=U, and (iii) HIV-related stigma in the context of sex.

Methods

HIV Futures is a periodic, cross-sectional survey of PLHIV in Australia that was established in 1997. Data for this paper were extracted from HIV Futures 9, conducted between December 2018 and May 2019. Participants completed pen-and-paper or online surveys. Hard copy surveys were distributed via community HIV organisations and clinic waiting rooms, while the online survey was promoted via targeted paid advertising in relevant magazines and on social media, such as Facebook and Instagram, and on dating/sexual networking applications utilised by gay and bisexual men. Study reimbursement constituted a prize draw of four A$250 grocery vouchers. HIV Futures aims to recruit between 800 and 1000 participants per study iteration, representing approximately 3% of PLHIV in Australia.¹⁵ Details about the HIV Futures study methods more broadly have been published elsewhere.¹⁶

A total of 847 valid survey responses were received for HIV Futures 9. Ethics approval for the study was granted by the La Trobe University Human Ethics Committee (ethics reference: S15-100).

Results

Discussion

For many individuals, sex is an important aspect of life. However, for some PLHIV, enjoyment of sex can be undermined by their HIV diagnosis or experience of HIV-related stigma. Although experiences relating to broader wellbeing among PLHIV appear to be improving in countries such as Australia,⁷ achieving a satisfying sex life remains a challenge for many PLHIV. Within our sample, close to 6 in every 10 participants (56.5%) reported that they were not satisfied with their sex lives. This finding is slightly elevated when compared with several other international studies of sexual (dis)satisfaction among PLHIV, which report between one-third and half of PLHIV expressing dissatisfaction.^3–6

Norman et al.¹³ demonstrated an affirming shift in concerns surrounding onward HIV transmission among PLHIV; as ART uptake has increased, so has viral undetectability, while at the same time fear of onward transmission has decreased, with the largest reduction in fear of onward transmission occurring in 2018 after the widespread introduction of U=U messaging. Rates of knowledge of U=U within our sample were promising, with 74.2% indicating they knew what it was. However, the findings of the present study indicate that the benefits of treatment as prevention/U=U may not have necessarily resulted in a widespread increase in sexual satisfaction. Alongside non-significant differences in sexual satisfaction by fear of onward transmission, a number of other biomedical-related predictors were also non-significant in this sample, including viral load status, knowledge of U=U, and enjoying sex more when their partners are on PrEP. Despite this, participants who reported they were not confident they would not transmit HIV to their sexual partners were more likely to report sexual dissatisfaction. This is striking in the context of onward transmission fears, given there appears to be a disjunct in the association between fear of onward transmission and sexual satisfaction, and confidence in non-transmission and sexual satisfaction. Large partner studies have demonstrated that viral suppression eliminates the risk of HIV transmission through sexual intercourse,^10,11 yet our results indicate there is a subset of PLHIV who are not confident in treatment as prevention, and this is associated with lower rates of sexual satisfaction. Indeed, 1 in 10 participants (11.5%) reported having a detectable viral load, and this goes some way towards explaining said non-confidence. However, approximately twice this proportion (23.5%) were not confident that they would not transmit HIV to a partner. This may reflect a small but critical group of individuals who do not know about or trust U=U, or have lingering concerns about onward HIV transmission due to surrounding stigma, discrimination, and/or legal considerations. It indicates there may be more work to be done in promoting the science behind treatment as prevention more broadly, affording opportunities for affirming healthcare and health consultations, and enabling health literacy among PLHIV (which can improve health outcomes)¹⁷ and the wider community.

This study also highlights several relevant physical and social correlates of sexual dissatisfaction among the sample. First, lower sexual satisfaction appears to relate to age, health, and relationship status, with those older than 50 years of age, those reporting poorer health, and those not currently in a relationship reporting lower satisfaction. Age-related decreases in sexual satisfaction are not unique to PLHIV, with similar impacts observed in broader samples,¹⁸ which can be related to life transitions (e.g. retirement, loss of partner), physiological changes (e.g. comorbidities, use of medications), psychological factors (e.g. aging-related body image concerns, decreased libido) and changes in relationship dynamics. On a similar note, poorer health has been demonstrated to affect sexual satisfaction in the broader population.¹⁹ Importantly, while these correlates are not unique to PLHIV, the experience of living with HIV may uniquely influence the way these relationships are expressed or the magnitude of their effects. For example, as PLHIV age, there may be unique concerns about the concurrent impact of HIV and other comorbidities on sexual functioning or desire. Brown and Adeagbo²⁰ note that aging and HIV can create a ‘double stigma’ for individuals that can affect the mental and sexual needs of PLHIV and their ability to access affirming support. As such, although the impact of health and age on sexual satisfaction is not wholly unexpected, further research on the impacts of these factors among PLHIV is warranted in order to assess the unique needs of this population, particularly as the average age of PLHIV increases in light of modern ART regimens.

Our findings also highlight several HIV-related correlates of lower sexual satisfaction that point to the possible enduring impact of stigma among PLHIV. Specifically, people were less likely to feel satisfied with their sex lives if they had been diagnosed with HIV more recently (i.e. in the past 5 years) and if they reported not wanting to have sex because of their HIV status. A diagnosis of HIV can profoundly affect an individual’s sense of self-identity and sexual quality of life, creating conditions that perpetuate negative internal feelings and serve as a reminder of living with the disease.⁸ Furthermore, although external experiences of HIV-related rejection in sexual contexts were not significantly associated with sexual satisfaction within our sample, not having sex because of HIV status was highlighted as a key negative correlate. This is a particularly worrying finding given that over two-fifths of the sample (44.4%) reported that they had avoided sex because of their HIV status. Combatting stigma and concerns about HIV status for PLHIV may not be as simple as eliminating transmission risk through biomedical means but instead requires an ongoing and multifaceted approach that addresses individual, community, and systemic generators of stigma. In this vein, the broader social contexts that PLHIV have to negotiate, and the role that this may have in diminishing sexual satisfaction or confidence in U=U, must be more comprehensively understood and addressed. When considering that distrust of U=U appears to be higher among gay and bisexual men who are not living with HIV (compared to gay and bisexual men who are living with HIV),¹⁴ it is clear that barriers still exist in the navigation of sex, intimate relationships, and connection between serodifferent individuals, even if this is not always expressed as explicit rejection. In this sense, without widespread adoption of U=U principles among the broader community, including those who are not living with HIV, the burden of stigma that PLHIV may feel in sexual contexts, or the experiences of discrimination that they may experience or anticipate, cannot be fully and rightfully extinguished. While there is unlikely to be a silver bullet approach to combatting these issues, the systematic mobilisation of multiple initiatives may be useful, including: individual-level support (such as peer services), accessible and affirming physical and mental health services, non-stigmatising media representation of HIV, more widespread understanding and acceptance of PLHIV as sexual and/or relationship partners (in the context of U=U), and population-level education that dispels myths about HIV and promotes understanding and empathy towards PLHIV.

Finally, our findings also indicated that participants who responded that they worry about their drug use experienced lower rates of sexual satisfaction. If a person is concerned about their drug use, it may be an indication that they are having broader issues relating to their physical health or poorer experiences of mental health. Although a recent study demonstrated that heavier or more diverse patterns of illicit drug use among some PLHIV are not necessarily associated with a decrease in self-reported physical and mental health outcomes,²¹ a wide range of substances have been demonstrated to adversely affect sexual functioning,²² which could in turn adversely affect satisfaction. Substance use disorders are also associated with an increase in anxiety, depression, and other mental health diagnoses among PLHIV,²³ which may also be related to decreased satisfaction.

Conclusion

If we quite reasonably hold that a satisfying sex life contributes to an increase in wellbeing, and if we make a commitment to quality of life for PLHIV, the results of this study are in equal parts striking and concerning. While U=U campaigning has been a tremendous international initiative and has resulted in high rates of knowledge about treatment as prevention within our sample, these data would suggest it is only getting us part of the way in ensuring sexual wellbeing for PLHIV. Biomedical prevention strategies and treatment as prevention messaging have not wholly ameliorated the negative impact of HIV-related stigma; some PLHIV are still avoiding sex because of their HIV status, and this is negatively correlated with sexual satisfaction. This relationship needs further specific and focussed investigation. As hard and intransigent as it has been for the past 40 years, efforts to tackle concerns about HIV and HIV-related stigma, in all its forms, remain critical.