What can we learn from a new HIV diagnosis?
What can we learn from a new HIV diagnosis? It's a question that researchers have asked regularly, writes Jeanne Ellard in this issue of Poslink+ Quarterly, with results that have often revealed the social processes that underpin the HIV epidemic in Australia.
Also in Issue 106, Positive Speaker Robert Grant shares what he learned, at a personal level, from diagnosis and living with HIV. While our editors unpack what the rapid reduction in new diagnoses reported last year in Australia means for big talk of ending HIV.
Featured in this issue of Poslink+ Quarterly is the photo exhibition Orange Grove, by Clifford Prince King.
‘Tell me, in your own words. How do you believe you became HIV positive?’ Researching HIV acquisition and diagnosis across time.
by Jeanne Ellard
It can be difficult for people living with HIV to talk about the events that surround their acquisition of HIV.
Yet Australia has a 30-year history of conducting in-depth research focused on HIV acquisition that has meaningfully engaged with the experiences of people newly diagnosed with HIV. A new study, launched this year, seeks to continue this work in the contemporary epidemic.
Since the first study commenced in 1992, this research has drawn attention to the social processes involved in HIV transmission and diagnosis. These studies have chronicled significant developments in the epidemic, including the arrival of effective HIV treatments, and later, the emergence of antiretroviral-based prevention. This research has produced groundbreaking insights into the ways in which risk and scientific evidence are interpreted and incorporated into people’s lived experiences and sexual practices. At times, it has even documented subtle shifts in prevention dynamics yet to appear in epidemiological or behavioural surveillance data.
1992–2006: Situating and negotiating HIV risk in the Sydney gay and bisexual community
Between 1992-2006 two consecutive studies were run from 1992-2000 and 2001-2006. Both primarily explored the events to which gay and bisexual men living in Sydney attributed their HIV acquisition.
Most men identified a specific event that they believed led to their HIV infection. Many attributed transmission to a sexual encounter where condoms either weren’t used or broke. A small number of men believed that they had acquired HIV through oral sex.
A common theme in these accounts was ‘control.’ This included a loss of ‘control’ attributed to drug and alcohol use or sexual desire, i.e. ‘heat of the moment’. Other accounts described the ‘control’ men felt they had to actively reduce HIV risk. For example, some men preferred to be exclusively the insertive partner if having sex without a condom. Men often had high expectations around HIV positive people disclosing their HIV status prior to sex. Yet, it was rare for men to blame sexual partners for their HIV acquisition. Instead, they emphasised personal responsibility.
More than half of the men were in relationships: with half of these men being in a monogamous relationship and over half of the men were in a new relationship (less than one year). The second study found that the end of long-term relationships featured as contexts for HIV risk, as men navigated HIV status disclosure and condom use with new partners. These accounts of HIV acquisition and risk were made sense of through concepts of love, trust, and intimacy rather than through epidemiological categories of HIV risk.
Accounts of HIV acquisition collected from the early 2000s onwards found increased adoption of non-condom-based risk reduction strategies such as serosorting (choosing sexual partners who share the same HIV status) and strategic positioning (usually, where an HIV negative partner takes the insertive position during anal sex and positive partner the receptive position). However, these strategies were often used without explicit discussions about HIV status or whether partners had had recent HIV tests. These findings revealed some of the challenges to adopt non-condom-based prevention.
2007—2023: A national focus, and the advent of treatment as prevention
There were again two studies conducted during this period. Both recruited nationally. In the study conducted 2007—2016, participants were men who were socially connected to the gay community. While 60 per cent of participants in the study conducted 2018-2023 were gay men, the other 40 per cent were women, and heterosexual and bisexual men. These studies explored the diagnosis experience in much more depth than the earlier studies.
One quarter of the participants in the 2018-2023 study were new or temporary migrants from Asia and South America, reflecting the changing epidemic. These participants acquired HIV before they arrived in Australia. Diagnosed in Australia, however, they frequently managed a range of complexities around treatment access (although all participants succeeded) and discrimination applying for visa extensions or permanent residency as a person with HIV.
While the use of non-condom risk reduction such as strategic positioning and serosorting continued to be common during 2007-2016 study there was an emerging awareness of ‘treatment as prevention’ or U=U and pre-exposure prophylaxis (PrEP). The accounts of participants provided insights into how gay men interpreted these developments, insights which were used to inform health promotion and other research about biomedical prevention.
Both studies provided insights about how treatment as prevention was understood. Post-diagnosis, many participants were very invested in attaining and maintaining an undetectable viral load, some using this information to resist negative and stigmatising reactions from others when they revealed their HIV status. In the later study one third of gay men reported current or previous use of PrEP. Another finding from this study was that mobility within Australia sometimes resulted in gay men becoming disconnected from sexual health care, including PrEP and HIV testing.
While most participants were linked to appropriate HIV care at diagnosis or shortly after, women and heterosexual men were more likely to be diagnosed by a physician with little knowledge or understanding of HIV. For the first time, the study conducted between 2018—2023 asked participants about their engagement with peer support. Peer support, whether formal or informal, was experienced as an opportunity to find acceptance, belonging and a ‘lived’ perspective of the clinical information they received. The most commonly accessed HIV peer support was the online private Facebook group The Institute of Many (TIM). During the life of the study there was also increased use of peer navigation, which was particularly valued for providing practical knowledge and information.
The current study: Newly Positive in the contemporary era
Continuing the tradition, researchers at the Australia Research Centre in Sex, Health, and Society (ARCSHS) are conducting a new study, Newly Positive, which explores experiences of HIV diagnosis and acquisition in the contemporary epidemic. Newly Positive will identify contexts and risk factors associated with HIV acquisition in the current era, a period in which there have been significant reductions in HIV transmission among Australian born gay and bisexual men, underpinned by the use of PrEP and undetectable viral load. However, these reductions have not been shared by all populations affected by HIV, including women, gay and bisexual men born overseas, and men who identify as heterosexual. Newly Positive will investigate the specific experiences of people diagnosed with HIV who are temporary residents and/or recently arrived in Australia, women and heterosexual men, to understand their prevention, clinical care, support, and legal needs.
Revisiting the data
These studies provide a rich collection of narrative accounts of HIV diagnosis, understandings of risk, interpretations of epidemiological and scientific information, and the meaning of living with HIV over time. In 2022 a new collaboration was formed, with the aim of bringing together the data collected over the previous 30 years to create an archive of accounts of HIV infection for future analyses. Future re-analyses of these data will explore the ways in which gender, sexuality, and class (socio-economic status) have shaped experiences of HIV across time. This archive is a unique set of data with significant cultural and historical value which the collaboration aims to preserve and draw on to document the history and changing meaning of HIV.
Participating in Newly Positive
Newly Positive is open to any person living in Australia, who is over the age of 18 and has been diagnosed with HIV in the previous 12 months.
People who have participated in the previous studies have told interviewers that they value the opportunity to explore their experiences of HIV acquisition and diagnosis in the confidential setting of an interview, and welcome being able to contribute to research that benefits other people living with, and affected by, HIV.
If you would like to learn more about Newly Positive or participate in the study, visit the Newly Positive webpage or email Jeanne Ellard j.ellard@latrobe.edu.au.
25 years later, HIV changed everything
HIV came to shape my life profoundly. I didn’t think that would be the case when I was first diagnosed, writes Robert Grant.
In the late 1970s, the gay scene was hot.
I was living in London, and clubbed and partied like a mad man. I was there, too, in the early 1980s, as cracks formed in our fabulous world. Rare diseases started to eat at the community, and a language of pathology took hold: Kaposi’s Sarcoma, Candidiasis, Toxoplasmosis. It was a time of uncertainty, and we coped as best we could with sudden, savage assailants.
When it was finally identified, HIV was branded a death sentence. We were told it was God’s vengeance on a decadent society, a just punishment for sodomites, prostitutes, drug addicts and people of colour; a nightmare of our own making. It struck deeply at the things and people we trusted and loved, and each of us lived our own versions of the epidemic. I saw how gruelling early treatments like Retrovir could be, and witnessed the passing of a number of friends and an ex-partner in the most harrowing circumstances. I retreated from the gay scene.
I knew what HIV was, its potentially lethal effects, and that I was in a high-risk group, but I decided that I didn't want to know whether I was positive unless I absolutely had to. I had moved on from the stigma and fear. I wasn’t going to have my life “medicalised,” or be defined in terms of “disease.” I was going to deal with any HIV-related health issues when they arose. That day came in 2003. After months of acute psoriasis that seemed impervious to treatment, a new dermatologist finally made the connection to HIV, with the impact of high viral loads on the immune system being one possible trigger for the condition. I accepted the time had come for an HIV test.
Although I had no other major physical symptoms, at the time of diagnosis, I had a viral load of 144,000 and a CD4 count of just 4. I had seen how traumatic diagnosis had been for others, but my response was rooted in growing up in a home where, if you’ve got a problem, you “don’t complain,” you “just deal with it.” So, I put my head down and “got on with it.”
Like many positive people, in the following years, I went through different treatment regimes, with no HIV-related health issues. By 2010, my regime had stabilised, my viral load was undetectable and my CD4 count was hovering at about 300. In 2011, I moved to Sydney. For the next few years, I worked for the State Government and NGOs, had a quiet social life, travelled but made no romantic attachments or had any sexual activity.
Then, in late 2016, I began experiencing mild hand tremors and was referred by my GP for an MRI brain scan. For various reasons, I never received the results and they were never followed up. Meanwhile, my tremors worsened, I began to have trouble with my balance and difficulty negotiating stairs. In 2018, I was referred for another MRI but was, without knowing, teetering on the edge of a precipice.
The MRI showed extensive white matter disease of the brain and, during the months waiting for an appointment with a neurologist, my condition rapidly deteriorated. I had to stop work. Soon, I was unable to walk without support, experienced involuntary hand spasms, problems with balance and falls. I couldn’t write a legible sentence or even sign my own name. Uncertain about the future of my health and independence, this was a very dark place. During the entire episode, however, I told no-one about what I was going through, only those involved in my treatment, and learned nothing about the kinds of support I now know exist.
In early 2019, tests from a lumber puncture identified HIV Associated Neurological Disorder, or HAND, a condition resulting from the virus escaping into the central nervous system and attacking brain cells. Results showed a viral load of 3,600 in my central nervous system, although only 98 in my blood. Finally diagnosed, I started a more aggressive meds regime. My neurologist had warned that recovery would take 6 to 12 months, and may never be complete, but mine was remarkably quick. After just three months on the new regime and a two-year gap, I started work again.
During its course, the condition had ground me down to my most basic, effecting a kind of mental and physical reboot and, in our family tradition, I had done it alone. When I finally told friends and family what I had been through, they were appalled. A couple cursed me out. What the hell was I thinking? Why didn't I tell them how serious things were? Of course, they would have been there for me. And that's absolutely true. I was a fool to be so self-absorbed and, with hindsight, so selfish!
The experience fundamentally changed the way I look at the world, how I relate to others and how I prioritise things in my life. It imbued me with a new, personal strength: if I can survive this, I can survive anything. I saw in retrospect the strength and value of the love and support of family and friends, and it made me more open to others. It also made me conscious of how profound HIV had been in my life, and a conviction that I had a story to share to perhaps help others dealing with HAND.
About this time, I finally learned of Positive Life NSW, and went on to write a piece for their newsletter and make contact with others living with HAND.
In early 2022, I moved to Melbourne to be closer to family, where I contacted LPV. I was a warmly welcomed and my offer to volunteer quickly taken up. One of my earliest experiences of peer support was in a workshop called Positive Reflections. There I was encouraged to reflect with six other people living with HIV on my relationship with HIV before and after diagnosis, and what my life is like now. I was struck by so many commonalities, but also the uniqueness of each of our experiences, the power of sharing, the courage of honesty, and the strength of community.
In the past two years, I joined the Taking Charge support group for people 50+ and become a member of the Positive Speakers Bureau, sharing my story with groups of police cadets, trainee HIV prescribers, healthcare and community workers, and at this year’s International AIDS Candlelight Memorial. My engagement with the positive community has been an enriching experience, sharing histories, stories of diagnosis, coming to terms with HIV, stigma, challenges and growth. It has strengthened my own sense of identity as an HIV positive man, and my desire to keep taking an active part in our community.
Pictured: Robert together with his family. Photograph supplied.
The end of HIV transmissions?
by Timothy Krulic
Rapid declines in new diagnoses and the commission of a federal HIV Taskforce last year have contributed to an exciting narrative which promises that the end of HIV is now within reach in Australia. But talk of a ‘virtual’ elimination may be premature unless we can overcome the inequities that HIV and its stigma continue to produce.
What people mean by the ‘virtual’ elimination of HIV
People living with HIV have long been critical of big talk about ending HIV. Without a cure, it can be dismissive, inaccurate or stigmatising to talk about the end of HIV when what we are really talking about is trying to prevent transmission or give access to lifesaving treatment. Even if we end transmissions in Australia, there will still be people living with HIV.
The fight against HIV and AIDS has always been about these aims, but momentum behind the ‘virtual’ elimination of HIV began to build ten years ago. This was when UNAIDS released its plan to end HIV as a public health threat by 2030. Scientific breakthroughs had recently proven that people living with HIV on effective treatment cannot transmit the virus to their sexual partners. The ambitious plan was largely predicated on increased access to antiretroviral therapy combined with PrEP and preexisting prevention efforts.
The UNAIDS produced a model which suggested that if treatment targets were achieved, new diagnoses could be 89 per cent lower in 2030 – the point at which new HIV transmissions would be virtually eliminated. Such an outcome would prevent 28 million new diagnoses and 21 million AIDS deaths worldwide. Initially, UNAIDS proposed the now famous “90 90 90” targets for the eventual diagnosis, treatment and virological suppression among 90 per cent of people living with HIV. The individual journey for people living with HIV from diagnosis to virological suppression is often talked about at a population level as the treatment cascade.
HIV elimination strategies around the world, including Australia, are based on the UNAIDS plan and rely on the ability of people living with HIV to get a diagnosis and have access to lifelong, most often daily, medication. In most places, broadening access to treatment requires big, structural change.
Is Australia close?
Since UNAIDS released its targets, HIV transmission in Australia has almost halved. Only 555 new diagnoses were reported in 2022, compared to 1079 in 2014. The decline in diagnoses has been so dramatic—falling as much as 88 per cent in some parts of inner-city Sydney—that the International AIDS Society declared virtual elimination in these areas.
Widespread use of PrEP among gay and bisexual men combined with rapid gains in access to treatment for people living with HIV have achieved these results. Models estimate that at the end of 2022, 87 per cent of all people living with HIV, including those not yet diagnosed, were virologically suppressed.
Media reports on the decline of new diagnoses in Australia have framed the virtual elimination of HIV transmission to be near – as close as 2030 – and centred the experiences of the communities who have been most engaged with Australia’s rollout of PrEP.
Yet a focus only on the success of the Australian HIV response can make it hard to see the work that still needs to be done. For example, it was not widely reported that 44 per cent of diagnoses in 2022 were classified as late, which increases the risk of HIV transmissions and health complications. Even the rate of decline in the total number of diagnoses can hide a lot. A breakdown by population shows that diagnoses have not declined equitably across all groups in Australia.
The rate of HIV diagnoses among gay and bisexual men born overseas has not fallen at the same rate as that of men born in Australia. Men born overseas now make up almost half of diagnoses among gay and bisexual men. HIV notifications among heterosexual women and men—many of whom are born or acquire HIV travelling overseas—have barely changed at all.
The overall number of diagnoses in 2022 was likely to be suppressed by COVID-related travel restrictions. So, we can expect a bump in the number of diagnoses reported in the next few years. While the largest gaps in the treatment cascade—or the time it takes for a person living with HIV to access diagnosis and treatment—are likely to be among people living with HIV born overseas , including heterosexual men and women.
If Australia is unable to address barriers and gaps in access to prevention and treatment among these groups, we are unlikely to see further improvement in the treatment cascade. While other countries, especially those without well-funded universal healthcare systems, lag far behind the UNAIDS treatment targets.
The strategy into 2030
Late last year, the HIV Taskforce—made up of expert clinicians, researchers and affected communities from across our partnership response—prepared a report for the federal government to inform its elimination strategy. The report included recommendations about how to broaden access to PrEP and HIV treatment.
There are mixed messages about HIV prevention in Australia. For people who do not have Medicare due to their residency status, PrEP is unaffordable. The rapid change in norms around the use of PrEP and condoms among the LGBTI community in Australia can also make it difficult for people to negotiate safe sex if they are not on PrEP or prefer condoms. The pervasive myth in Australia that women and heterosexual men are not at risk of HIV also sends a confusing message about when or how to use protection. The HIV Taskforce recommended that subsidised PrEP be made more widely available, but any education or prevention campaigns must also engage communities around these misconceptions and norms.
Stigma and fear of discrimination are recognised globally as a major barrier to diagnosis. Our previous National HIV Strategy included a target for ‘zero’ HIV stigma and discrimination but there was little detail in terms of what HIV-related stigma and discrimination looked like in Australia, or the change that was required to make this happen.
For example, there is HIV-based discrimination in migration policy and laws across Australia that enable criminal prosecution or coercive measures against people living with HIV. These laws do not protect public health and only serve to entrench stigma and discourage people from knowing their HIV status.
The HIV Taskforce proposed a reform agenda to target HIV-based discrimination in the migration system and laws that criminalise people living with HIV. It also outlined objectives to tackle HIV-related discrimination in healthcare settings. But it was mainly silent on the stigma and discrimination that people living with HIV experience within the sexual, social and moral norms of Australian society. The stigma that people living with HIV experience in these settings can shape their quality of life.
A more inclusive narrative
The stigma-related distress and challenges that people living with HIV experience are matters of social justice and health equity. A better quality of life for people living with HIV is also linked to our elimination strategy, because it leads to improvements in testing, treatment, care and virological suppression.
Our previous National HIV Strategy adopted quality of life targets as a measure of the progress made to address stigma and other factors that impact the wellbeing of people living with HIV. The quality of life concerns of people living with HIV will need to continue to be addressed if Australia is to reach its ambitious treatment targets.
The ‘nearness’ of the elimination of HIV transmissions can make the big, structural change required to end HIV-related stigma seem less likely to occur. But big, structural change is something we have done before.
Early in the epidemic, massive social, health policy and law reform and change occurred which enabled gay men, sex workers and people who use drugs to lead the way promoting clean injecting equipment, condoms and other safe sex practices. Today, we need a similar sense of partnership and solidarity for an inclusive narrative to end HIV that still includes people living with HIV and migrants of diverse gender, sexuality and cultural background.
Timothy Krulic is a PhD candidate at the Australian Research Centre in Sex, Health and Society, La Trobe University. Stepping out of secrecy: heterosexuality, quality of life, and experiences of HIV peer navigation in Australia, published at Culture, Health and Sexuality, is the latest journal article from his doctorial research.
Clifford Prince King (1993) is a self-taught artist based in New York and Los Angeles. King documents his intimate relationships in traditional, everyday settings that speak to his experiences as a queer black man. His current show, Orange Grove, offers portraits of community, companionship, and self-realisation. Woven into the narrative is King’s own HIV diagnosis and his subsequent shifts in body and self. Orange Grove will be open to view until May 26 at Footscray Community Arts as part of PHOTO 2024.
ISSN 1448-7764