One of the challenges our heterosexual clients with HIV face, is disclosure. This is an issue for all people with HIV, but for those living and socialising within a culture that knows very little about HIV, the challenge can be enormous. So being informed and confident about Treatment as Prevention (TasP) improves people’s ability to disclose.
Prevention and education messages, and awareness raising campaigns about HIV have largely focussed on ‘at risk groups’ such as gay men, sex workers and people who inject drugs. Take a look at any gay community newspaper and you will see HIV mentioned frequently. Now compare that to the Daily Telegraph or the Sydney Morning Herald and you start to get a sense of the invisibility heterosexual people with HIV talk about.
Heterosexual people diagnosed with HIV come to our service in shock. It’s not a diagnosis they expect, they usually don’t know anyone with HIV, they are often confused and anxious about who to tell, and they think their sex life is over. Frequently they retreat into isolation and figure out a way to live in the world without disclosing, and keep their HIV a secret. When they do disclose, the people they speak to are often ignorant, and the person with HIV then becomes an educator and support person.
Disclosing to a partner can seem overwhelming to people newly diagnosed, yet sexual freedom and desirability, as well as anxiety about transmission, is often on their minds. Some wonder how they will ever have sex again. Sometimes the diagnosing clinician, frequently not up to date about HIV themselves, has instilled the client (and their partner) with unnecessary fears. Searching for information online can be confusing and expose them to more ignorance and prejudice.
So how do we, as health professionals, communicate sometimes complex information about TasP to people with HIV? And do we routinely? I’ve heard experienced HIV clinicians say they don’t trust their clients to handle the information, so they don’t really tell them about it. Others are scared to say “HIV treatment prevents transmission” because they can’t give them absolutes. You can’t say with 100% certainty that this client will never transmit HIV.
As health professionals, we need to be fully informed ourselves and be able to address their concerns. The evidence is clear that HIV Treatment prevents transmission, as long as medication is effective, taken as prescribed and the person is regularly monitored by their doctor.
We should all be familiar with the actual scientific studies and papers about TasP. The Swiss Statement (2008), HPTN052 (2011), the British Statement (2013), the Canadian Consensus Statement (2014), results from the Partner Study and The Australian medical consensus statement (2016), all provide clear information about risk and transmission. Even the CDC concurs.
Clients want to know the facts, the history, how long we have had the evidence, and is it solid. They will have questions about oral sex, menstrual blood, transmission via skin, anal sex, questions about male and female transmission, receptive and insertive intercourse. And if they don’t, it’s important we address these subjects or make it clear we are willing to discuss them openly and positively.
They may also have concerns around shared laundry, hugging or kissing. They might worry about transmission to their child (born), or skin scratches and other body fluids. Treat these concerns seriously. Many heterosexual people don’t know much about HIV, or come from cultures where all kinds of stories abound. Sometimes science and evidence will not allay irrational fears. HIV negative partners can be fearful, and sometimes the positive partner worries more. These fears have an impact on a person’s mental health, adherence to medication, and even their will to live.
Ideally they will do the reading about TasP themselves. In reality they often don’t, won’t or can’t. So it’s up to us as health professionals. Imagine you have HIV and you want to disclose to a potential or actual sexual partner, or to someone you really like. Do you believe you can have a relationship and preserve your sero-different statuses? Challenge yourself – how sex-positive are you? What are your attitudes to sex and pleasure? Would you have sex with someone with HIV? Without a condom? How well do you know the science? Do you think people with HIV are entitled to a joyful sex life? What are your attitudes to drug use, sex work, and multiple partners?
Many of our clients deny themselves the pleasures of love and sex, and shy away from disclosure, sex and relationships altogether. When to disclose? How? Why? And with the recent law change should they at all?
These issues are complex and difficult when disclosing within a community that knows virtually nothing about HIV except a dark hazy memory of the Grim Reaper campaign.
The British HIV Association (BHIVA) now recommends that health professionals discuss the impact of treatment on sexual transmission with all people with HIV (HIV treatment as prevention, HIV Prevention England, Roger Pebody 2014).
Understanding that an HIV diagnosis has a significant impact on a person’s sex and love life, especially in the heterosexual community, is crucial for all of us. Fully appreciating the importance of sexual intimacy, self-esteem, love, fun, pleasure and joy to a person’s mental and physical health, can motivate us to properly educate ourselves about TasP, and then communicate that clearly to people with HIV.
This leads to positive health outcomes for our clients and patients, improves treatment adherence, facilitates disclosure, prevents HIV transmission, and increases linkage to and retention in care.
Our strategic obligations met and happier clients, it’s a good outcome all round.