Author: Jen Johnson, Program Coordinator of ARCSHS’ Blood-Borne Virus (BBV) Sector Development Program
When COVID-19 hit Victoria in early 2020, the blood-borne virus (BBV) sector adapted fast.
Interviews with the leaders of six community and peer HIV and hepatitis organisations during the first 3 months of the shutdown told an incredible story of a system remaking itself.
Estimated reading time: 8 minutes
How Australia’s Victorian blood-borne virus sector is adapting to COVID-19
The blood-borne virus (BBV) sector is adapting — and adapting fast. Our peer and community organisations have acclimatised to uncertainty. Through intensive information sharing, collaborative problem solving, and community engagement, the sector has rapidly developed new ways of working.
The W3 Framework shows us that BBV peer and community organisations adapt to change. How much and how effectively they adapt, however, depends upon how well engaged the whole BBV response is with its environment. The Framework reminds us that the sector needs to adapt together.
During the first 3 months of the COVID-19 shutdown, I interviewed leaders from six peer and community BBV organisations and published the interviews in the BBV News. This was partly about keeping the sector connected. It was also partly about making sense of how the sector was adapting.
These interviews tell an incredible story of a system remaking itself…
First reactions to a new pandemic
At first, organisations and communities were in shock, trying to prepare for the unknown from within the unknown. This profoundly impacted individual nervous systems, households and social networks, organisations, and wider communities.
[L]ike everyone, we are all managing the shock and disorientation of where we find ourselves. […] We are spending a lot of time thinking about how we prepare for unknown eventualities.
Interview participant
Organisations realised that the pandemic would disproportionately affect marginalised people by both exacerbating existing vulnerabilities and creating entirely new ones.
Amid early projections of system overload, the BBV Sector rolled its sleeves and divided the complex landscape of BBV prevention, testing, and treatment into ‘essential’ and ‘non-essential’ activities.
They understood that part of working effectively in BBVs in the new COVID-19 pandemic would paradoxically involve pausing some BBV testing and treatment campaigns in order to prioritise other community needs.
Through my interviews, I heard about how organisations learned about and responded to these needs.
New priorities and a need for new information
Everyone has been working really hard to get people the info they are asking for.
Interview participant
Looking for credible information from trusted sources, community members inundated BBV community and peer organisations with questions about COVID-19. People wanted information within which they could locate themselves and their health, so they could make good decisions about how to stay safe.
The organisations stepped up to produce it. This meant tuning in carefully to the changing public-health-policy environment while simultaneously working to understand how the new world was impacting key populations and service users.
Dealing with exacerbated marginalisation and vulnerabilities
Communities were immediately impacted by reduced access to sterile injecting equipment, involuntary withdrawal, and changes to police powers. There were also concerns about medication access and supply impacting people with HIV, people on hormone treatments, and people on opioid substitution therapy.
People in marginalised communities are in desperate situations. There is so much to do.
Interview participant
Organisations were especially concerned about finding ways to support people who use drugs and people with housing or financial insecurity. They had to challenge the stigmatising lack of response to the loss of employment for people working in the sex industry.
For some, there is a sense of stigmatisation. A reminder of the early days of HIV, filled with uncertainty and feelings of being judged as vectors of transmission. Some of our members were already experiencing complex challenges — financial insecurity or visa status or sleeping rough — and they are impacted much more significantly by the pandemic.
Interview participant
There were also strong concerns about how scaling up policing during the shutdown could impact migrant communities and other marginalised groups over time, creating new forms of stigma and criminalisation.
Initial messaging regarding Stage-3 restrictions were not provided in first languages, which leads to our communities being more vulnerable and subject to fines for breaching restrictions.
Interview participant
Moving online
Without the capacity for face-to-face interaction, peer and community organisations rapidly moved their programs and services across to digital platforms. Organisations devised new options — like buddy systems, phone rosters, and web chat functions — to reduce isolation and stay connected with their communities.
Since introducing the web chat function […] we are having lots more contact with people with limited English. […] It seems that a text chat is easier compared to a phone call. There is not as much time pressure in a web chat. Web chat enables people to pause and think and communicate at their own pace.
Interview participant
Improving program reach and equity
Peer and community organisations had long suspected that increasing remote access could extend program reach and equity. However, whether through lack of confidence, lack of resources, or just too many competing priorities, organisations had rarely brought the opportunities to scale.
Of course, these limitations began to evaporate when the shutdown declared that the use of new platforms and technologies was no longer optional. These were suddenly the only means of maintaining deep engagement with communities and ensuring that peer workers and organisations could build trust with new communities and clients.
Widening the digital divide
Organisations were acutely aware that the loss of face-to-face connection could leave culturally diverse communities further behind, with unmet needs for translated information compounding loss of income and visa uncertainty.
Migrant communities have a long history of using digital technologies to stay connected to overseas family members. But that’s different to connecting in group and community settings, where people like to see each other in person to build trust and create safe group spaces. So there are some challenges to overcome with electronic platforms, especially if communities can’t see each other’s faces. We are learning that people are a bit suspicious of big online groups, especially where faces are hidden.
Interview participant
The shift online benefited those with digital means but further widened the digital divide. Also, this shift happened so fast that organisations had to take great care to ensure that they were not compromising privacy and security, which has, for so long, been central to BBV community engagement.
We have this situation […] where moving to online support increases access for some and denies access for others. Lots of people don’t have adequate privacy or access to technology.
But we are considering the ways that these new forms of online engagement could diversify our offerings and ability to support going forward.
Interview participant
Adapting to rapid change
These interviews took place at a time when community and peer organisations were just beginning to grapple with how to move across this unfamiliar terrain. A time when the immeasurable public health implications of COVID-19 on HIV-affected and hepatitis-affected populations were utterly eclipsed by COVID-19 itself.
The W3 Project also came about during a time of ‘rapid change’ in the HIV and hepatitis C treatment landscape. Although, compared to the change we have just experienced across the world in a couple of months, it seems almost quaint to imagine using the term ‘rapid’ to describe changes that happened over a couple of years. Nonetheless, the concepts behind the idea of adaptation in times of rapid change are useful.
How, in the context of COVID-19, do we understand where to put opportunistic testing and promoting treatment for hepatitis C? What does it mean for people to stop taking PrEP?
How can we take pressure off the healthcare systems while, at the same time, supporting people to stay connected with chronic disease management and prevention?
How do we avoid driving ‘healthy sexuality’ underground as we pivot from decades of fighting for sex-positivity in health promotion to messaging around not having casual sex? Can we do this without marginalising and stigmatising those who are unable to make this massive shift?
Final thoughts
I will continue exploring these and other questions as I continue interviewing leaders across the sector. This, however, I do know: The answers will be determined by the insights, skill, knowledge, and leadership of our peer and community organisations.
If peer and community organisations — and indeed the entire sector — are to adapt effectively, peer insight, skill, and leadership need to be valued and trusted. This trust needs to come not only from their communities but also from mainstream health services, research centres, and policymakers across the BBV response.
Read the interviews
This post reflects on the following six interviews:
- Harm Reduction Victoria (March 2020)
- Living Positive Victoria (April 2020)
- Thorne Harbour Health (April 2020)
- Centre for Culture, Ethnicity and Health (May 2020)
- Hepatitis Victoria (May 2020)
- Positive Women Victoria (June 2020)
Jen continued to interview (peer and non-peer) sector workers throughout Melbourne’s 2020 COVID-19 lockdown:
- Monash Health (June 2020)
- Harm Reduction Victoria (July 2020)
- Bolton Clarke HIV Services (September 2020)
- The Austin Hospital (September 2020)
- Thorne Harbour Health and the Victorian Aboriginal Community Controlled Health Organisation (October 2020)
- Melbourne Sexual Health Centre (November 2020)
Other posts in our COVID-19 Series
This post is one of a 3-part series published in 2020 during Australia’s COVID-19 lockdowns. These posts illustrate how the Australian HIV and hepatitis C sectors adapted to the shock of COVID-19. We wanted to celebrate the amazing ability of peer responses to adapt in times of rapid change in order to support their communities.
