ASHM Report Back

Clinical posts from members and guests of the Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine (ASHM) from various international medical and scientific conferences on HIV, AIDS, viral hepatitis, and sexual health.

Tawhanga	Nopera

Tawhanga Nopera

I have lived with HIV since I was 22, contracting the virus through unprotected sex in 1998. I identify as takatāpui and am a genderfluid Māori person who lives in my tribal village connected to my whānau, hāpū and iwi, or family, subtribes and tribes. I have been a professional artist since 2007 and recently submitted the first creative practice PhD through the Faculty of Māori and Indigenous Studies at the University of Waikato. My research focuses on ways that raranga, a traditional Māori weaving process, can be used as a methodological approach to heal gender identity and sexual trauma. Specifically, within my research and creative practice I use raranga to analyse, interpret and transform lived realities of marginalised people.

Increasingly, trans and gender diverse people are being identified by global organisitions as a population in need of HIV resources, however as often as they are identified they are still not included in meaningful ways.

"There has probably never been a population both more heavily impacted and less discussed at scientific meetings the the transgender population around the world" (Poteat, 2016).

Decades of joint advocacy has ensured the inclusion of trans and gender diverse people at ASHM. The task ahead is to ensure sustainable and equitable strategies for these communities and that they are led by tans and gender diverse people. 

Globally, the prevalence data shows that 19.15 of trans women worldwide are estimated to be living with HIV (Baral et al, 2013). There is limited empirical evidence about prevalence among trans men, and no data about HIV among non-binary people. The "absence of evidence due to lack of resource allocation and or proper research is usually considered as 'evidence of absence', naturalizing the gaps in data collection and analysis" (IRGT, 2016). Less than 40% of countries report that their national HIV/AIDS strategies address trans and gender diverse people (Poteat et al, 2016).

There is a lack of data across countries, with the majority of data sitting in the global north. Often, sampling often includes only very particular populations.

In terms of the Australian experience, the Kirby Institute's analysis of ACCESS data (Callender et al, 2017), of 696 patients recorded as transgender, 29% were women, 32% were men and 40% did not have their gender identity captured. Of these patients, 5.2% were HIV positive. Prevalence among trans women was 8.9% and trans men 4.5%. Taylor Square Private Clinic reported prevalence as 4.5% among trans women and 0% among trans men (Pell, Prone and Viahakis, 2011). The Private Lives 2 Study found 1.4% of trans women live with HIV (Leonard et al, 2011).

The most comprehensive data of HIV prevalence among trans women (8.9%) is probably not accurate because of inadequate data collection methods.

HIV risk factors for these populations:

  • Receptive vaginal sex can pose a different level of risk for trans women (Cornelisse et al, 2017)
  • Stigma, discrimination, social exclusion from employment and education (Poteat et al, 2014)
  • Trans women more likely to report sex work (13%) than other cisgender patient groups (9%) and are more likely to report injecting drug use than gay and bisexual men (7% vs 4%) (Callander et al, 2017)
  • By contrast, trans men were no more likely than other groups to report sex work or injecting drug use (3%) (Callander et al, 2017)
  • HIV risk among tans men is similar to HIV risk for cisgender men (CSRH, 2016)
  • Research into trans women's experiences in Australian's men's prisons found that incarceration increases risk factors of HIV including physical and sexual violence (Wilson et al, 2016)

For transgender and gender diverse sex-workers, there are other intersecting social and cultural factors that impact upon their risk of contracting HIV.

Barriers to prevention include invisibilising methodological approaches, a lack of cultural competence, social and systemic barriers, geographical barriers, under representation in targeted health promotion strategies and legal barriers that perpetuate pathologisation. There is a low workforce literacy and systemic barriers (particularly legal) that exacerbate narrow clinical models and ultimately leads to entrenched mistrust among trans and gender diverse people.

"Other barriers to health and health care are the numerous socioeconomic determinants of health that legally, economically, and socially marginalize trans people. These include discrimination in employment, education, housing, and relationship recognition; police harassment, often as a result of actual or assumed association with sex work; and identity document policies that deny many trans people legal recognition in their true gender. They also include aspects of structural violence such as racism, violence against women, and poverty" (Open Society Foundation, 2013).

Both policy and legal environments need to be opened up and there needs to be a continuance of critique of systems that perpetuate structural violence.

Globally we are at a crossroads, with significant progress made towards the virtual elimination of new HIV transmissions in Australia by 2020. Success is characterised by collaboration and strong partnerships between community-based organisations, research, policy and (some) affected communities. Combination prevention strategies have been enhanced through peer-education and harm reduction programs, condom usage, PrEP, PEP and TasP. Also, there has been a focus on increasing the quality of life for PLHIV. 

In Australia, the sector is well positioned to achieve the UNAIDS global targets of 90-90-90.

But is this enough?

There are persistent issues for people of culturally and linguistically diverse communities. Late diagnoses are an ongoing issue, in particular with Aboriginal and Torres Strait Island communities, as well as South East Asian populations. For Aboriginal and Torres Strait Islander people, the rate of HIV is more than double that for non-Indigenous Australians, exacerbated by a completely unique set of transmission drivers. Criminalisation is still impacting negatively on sex-workers and their access to services. Data on key populations, such transgender and culturally and linguistically diverse populations is incomplete. Stigma and discrimination, barriers to health literacy, shame and machismo are having a continued impact on progress.

From a moral and human rights perspective it is imperative that on one is left behind!

Over the period of  the epidemic we have amassed a great deal of evidence and a good blueprint of what works well to enable the sector to move forward, but action needs to be taken now to:

  • Enable equitable access to new HIV testing technologies and harm reduction strategies
  • Reduce barriers to accessing treatment and care
  • Increase health literacy among the sector workforce and throughout communites
  • Enhance the meaningful opportunities to involve affected communities
  • Improve the framing and reach of health promotion efforts
  • Advance shared care models and dedicated services for key populations
  • improve date and surveillance, research and evaluation strategies
  • Continue to invest in partnerships

What is our response?

Are grass-roots efforts like we saw in the 80s and 90s needed or even achievable? We need to assess what things are different now and ask what support is needed by affected communities today to give them a voice. As well, we need to better understand what role other key stakeholders (policy-makers, funders, practitioners and researchers) collectively play - we need better funding models and more visibility of the issues.

How do we coordinate our efforts for efficiencies and synergy ti ensure no one is left behind?

Young, Deadly and Syphilis free is an aspect if the Young Deadly and Free campaign focused on improving STI infection rates amongst young Aboriginal and Torres Strait Islander people living in remote Australian communities. The outcomes are to:

  • Increase age specific syphilis testing among young people in remote communities affected by the syphilis outbreak
  • Increase awareness  and understanding of syphilis, its transmission, testing and outcomes among young people
  • Improve awareness of the syphilis outbreak among clinicians and understandings of syphilis testing for remote clinicians

The components of the campaign include a media strategy involving television commercials, radio advertisements and other media; supporting posters and multi-media education materials; a social media campaign for peer to peer delivery of key messages about syphilis, and; a health service engagement strategy towards testing promotion. The media strategy also includes messaging local languages and Kriol.

Using analytics for Facebook, the platform where the majority of resource sharing is taking place, it is apparent that the videos developed for the campaign are having the most reach. This is followed by image-based resources. It is difficult to measure the extent of links being shared as Facebook's analytics do not prioritise accounting for these. Instagram is being used although currently the account only has 54 followers.

Unfortunately, getting info to really remote areas is still proving difficult.

Moving forward, the campaign is investigating the use of online ambassadors who would be paid to guide others in their social networks towards information.

To develop the literacy capabilities of clinical service providers, an electronic newsletter sent via email is sent fortnightly to over 350 health service staff. These act as reminders about campaign services, the outcomes of the campaign, key messages and stories from health services highlighting strategies for testing On average, about 38% of these are opened which is on par with other forms of electronic newsletter clinicians may receive. .

 

Young Deadly and Free is a culturally responsive campaign, targeted to combat the prevalence of STIs amonst Aboriginal and Torres Strait Islander youth. The campaign has been developed by the Aboriginal Health Team at the South Australian Medical Research Institute. The rationale for the campaign is based on increasing rates of STIs experienced by Aboriginal and Torres Strait Island people and strategies toward providing appropriate educational tools. Recent findings from the Kirby Report released 6 November 2017, indicates a 33% increase in diagnoses of HIV amongst Aboriginal and Torres Strait Island people between 2011 and 2016. In Aboriginal and Torres Strait Islander communities, young people and women feature prominently in STI infection data. 

Young Deadly and Free is an attempt to enhance the knowledge, awareness and skills surrounding sexual health literacy, with a focus on Aboriginal and Torres Strait Islanders aged between 16 and 29, living in remote and very remote Australia. The components of the campaign include:

  • Clinician resources
  • Animations, infographics and fact sheets for young people
  • People of influence resources
  • Peer education

In terms of Clinician resources, the campaign has developed a resource audit to help clinics ascertain the things that work and find gaps in service provision. As well, new knowledge-bases have been built to help clinicians feel more confident in their approaches to testing for opportunistic infections and skills in talking to young people about blood-borne viruses. Resources for young people have been developed for visual appeal and utilise forms of communication that young Aboriginal and Torres Strait Islander can relate to. Enlisting people of influence within communities enables strength-based ways of sharing knowledge within communities. Peer education strategies pay young Aboriginal and Torres Strait Islander youth to facilitate peer education programs, with between 4 and 8 sixteen to twenty-four year olds facilitating at different sites throughout Australia.

http://youngdeadlyfree.org.au/

 

Julie began her presentation with a slide that outlined food security measures as quantifying the availability of food; the ability to access available food; the ability to utilise available food, and; the stability of accessible and available food sources.

 

In Australia, 1 in 6 people report having experienced food insecurity at least once in the last 12 months (Food Bank, 2016), which aligns with other data pertaining to food insecurity. Thus far, the prevalence of food insecurity amongst people living with HIV is unknown.

 

The rationale for the study is underpinned by literature that links food insecurity to adherence issues. Also, the HIV Futures 6 study showed that 42% of people living with HIV received financial support through government means and that 31% lived below the poverty line.

 

Julie’s study utilised data from participants who utilised service across 6 sites in Sydney. The goal was to have 200 participants of varying age and ethnic backgrounds and with varying CD4 counts and viral loads. Administered through a phone survey, the study involved asking participants questions that were rated using the USDA six item subset tool. 162 participants were surveyed (92% male and 8% female) which ultimately matched the gender balance of the HIV Futures study. Of those surveyed, it was found that 47% were food insecure.

 

All Indigenous respondents surveyed were found to be food insecure. Key factors for food insecurity included being unemployed or living on a pension; inner-city living; a low CD4 count, and; a lower self-perception of health. Employment and education beyond high-school level led to better food security for those surveyed.

 

Julie emphasised that an awareness of food insecurity for people living with HIV may be lacking in the sector and that this is an issue that needs further investigation.

 

 

Dr Power began her presentation with a brief outline of Stigma, stating that “stigma is a social product”, rather than something that is an innate part of who we are as people.

 

Her research focussed on findings that have emerged from the HIV futures study, which began in 1997 and is repeated and added to every two years. In this aspect of the study, Dr Power measured the social impact of enacted stigma that people living with HIV encountered, assessing levels of internalised stigma and also anticipated stigma. Ultimately, the study is intended to show the relationship between stigma and health outcomes; seeking to find ways to use the data toward strategies to combat stigma.

 

Participants in the research were surveyed through the most recent HIV futures 8 study. Questions repeated those of previous studies, but also new questions were developed using language that participants of previous studies had used to describe the impact of stigma.

 

Findings highlighted a significant increase in disclosure related fears, with isolation and social withdrawal being a dominant theme. People living with HIV who reported lower perceived stigma reported higher levels of social support, higher levels of disclosure and good relationships with the healthcare professionals they engaged with.

 

Stigma encountered within the workplace and anxiety about unintended disclosure at work featured highly in participant responses. Dr Power explained that these findings enables strategising toward combatting stigma through workplace focused initiatives. Even though the workplace often dominates people’s ability to move through life and is entrenched with hierarchies, workplaces are also structures through which to communicate. The findings of Dr Power’s research provides good evidence for resilience through workplace social support programs.

 

 

 

 

 

RT @qld_poz_people: MOSAIC, NAPWHA and Femfatales want to know about Women's experience of ageing with HIV. They have produced a survey whi…

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