About the Author
Jen Johnson is the Program Coordinator of ARCSHS’ Blood-Borne Virus (BBV) Sector Development Program.
The BBV Sector Development Program works to support and strengthen the Victorian BBV workforce to meet the challenges of elimination targets, new prevention technologies, and scaling up testing and treatment.
Jen has been interviewing leaders from peer and community organisations across the sector since the beginning of the COVID-19 shutdown. We invited her to share her reflections about how the community sector has been engaging, adapting, and influencing its way through COVID-19.
The 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 the degree (and effectiveness) of BBV peer and community organisation adaptation 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 of six community and peer HIV and hepatitis organisations. These conversations were published in the BBV News. Part of this was about keeping the sector connected, and part of it was about making sense of how the sector was adapting.
These interviews tell an incredible story of a system remaking itself…
Early on, organisations and communities were in shock, trying to prepare for the unknown from within the unknown. This profoundly impacted on 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 environment would paradoxically involve pausing some BBV testing and treatment campaigns in order to prioritise other community needs.
I heard about how organisations learned about and responded to these needs.
Everyone has been working really hard to get people the info they are asking for.Interview participant
BBV community and peer organisations, being trusted sources of credible information, were inundated with requests from communities for specific information about COVID-19. People wanted information within which they could locate themselves and their health, to make decisions about how to stay safe.
The organisations stepped up to produce it, which meant tuning in carefully to the changing public health policy environment while simultaneously working to understand the impact that the new world was having on key populations and service users.
Communities were immediately impacted by reduced access to sterile injecting equipment, involuntary withdrawal, and changes to police powers. There were concerns about medication access and supply impacting on 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 very 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 further scaling up of policing during 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
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 webchat functions — to reduce isolation and stay connected with their communities.
Since introducing the webchat 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 webchat. Webchat enables people to pause and think and communicate at their own pace.Interview participant
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 were rarely able to bring the opportunities to scale.
Of course, these limitations began to evaporate when 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 were able to build trust with new communities and clients.
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
These interviews took place at a time when community and peer organisations were just beginning to grapple with how to move across this new terrain. A time when the immeasurable public health implications of COVID-19 on HIV- and hepatitis-affected populations were utterly eclipsed by COVID-19 itself.
The W3 Project also came about during a time of ‘rapid change’ – although compared to the change we have just experienced across the world in a couple of months, it seems almost quaint to imagine the term ‘rapid’ being used to describe changes happening in the HIV and hepatitis C response over a couple of years. Nonetheless, the concepts behind the idea of adaption 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 make this massive shift?
I will continue exploring these and other questions as I continue interviewing leaders across the sector. (You can subscribe to the BBV News if you would like to read the rest of the interview series as it comes out). I do know that — as the W3 Framework shows us — the answers will, in large part, 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, not only by their communities, but also by mainstream health services, research centres, and policy makers across the BBV response.