For a long time, women and other people who conceive were told that living with HIV meant they could not bear children. This occurred both in high income and lower income countries, including in Australia. People with HIV sometimes underwent sterilisation procedures to remove their ability to get pregnant. Sometimes this was done against their will, e.g. without their knowledge during another surgical procedure. For all the good it can do in the world, the sexual and reproductive health discipline has a long history of similar practices.
With this historical context in mind, it matters even more that we respect the reproductive autonomy of women and other people who conceive when they are living with HIV. Reproductive autonomy means the freedom to make decisions about your own body and its potential to get pregnant and give birth. Respecting reproductive autonomy means taking seriously another person’s decisions on these matters.
It is completely possible to get pregnant and give birth (vaginally or via Caesarian) without transmitting HIV to a sexual partner or an infant. This is achieved through the provision of effective antiretroviral medication to the mother, meaning a treatment combination that reduces viral load to undetectable levels. If viral load is detectable, sexual partners may use PrEP to prevent transmission. In rare circumstances, the baby may be given antiretroviral medication to protect them from transmission. These arrangements are known as PMTCT (prevention of mother-to-child transmission).
ASHM (the Australasian Society of HIV, Viral Hepatitis and Sexual Health Medicine) has published guidelines for nurses and midwives involved in the care of women and other people who get pregnant.
The guidelines emphasise the importance of a multidisciplinary care team and care coordination. HIV Peer Navigators can play an important role in these arrangements. You may be called-on to support your client to make an informed decision about treatment and prevention arrangements. This can include talking through complex information in plain language, at a pace that makes it possible for the person with HIV to manage their emotions and take in the information. You may also work with the person to build their skills to advocate for their own capacity to make decisions about their care.
The risk of transmission of HIV to an infant fed human milk from an HIV-positive parent is not zero, so we cannot currently say that U=U applies to breast- and chest-feeding. However, the risk is very low, and in optimal conditions, a woman or parent living with HIV may choose to breast- or chest-feed.
Note: Chest-feeding is a term that applies to people who do not identify as female but retain the ability to produce human milk and feed an infant with it.
There are guidelines and a resource that describe the decisions an HIV-positive mother or parent can make regarding breast- and chest-feeding an infant:
A recent study known as Positive Perspectives 2 found that people with HIV in Australia report low sexual wellbeing compared to their overall wellbeing and satisfaction with HIV treatment.
Sexual wellbeing can mean a sense that our sex lives are fufilling and meaningful. That does not always mean we are having sex with other people — sex with ourselves can be equally important.
Working in HIV we often focus on the prevention of HIV transmission to the exclusion of other factors like whether sex is wanted and enjoyable.
There are numerous resources available for people to explore and improve their sense of sexual wellbeing. For people who are really stuck there are options like counselling and sexology.
It is not always a matter of having ‘more sex,’ and simply giving someone advice to ‘download the apps’ probably isn’t going to help.
Seeing a sex worker is a perfectly valid option for people who can afford it. Masturbation is available to most people, though some people with disability may need assistance (and this can be funded through the NDIS).
Some aspects of sexual wellbeing are more complicated when you are living with HIV. One complication is the question of when and how to disclose HIV status (if you decide to). It can help to talk with a peer (or group of peers) about how they approach the same issues.
When talking with a client about sexual wellbeing, always keep an eye on your boundaries; inviting the discussion can lead onto some tricky territory! We discuss boundaries more in Module 2 on Self Work.