The art of evolution: What health not-for-profit organisations can learn from Australia’s HIV sector

In ever-changing times, health not-for-profit (NFP) organisations must continually adapt to remain relevant and effective. Over the past forty years, Australia’s HIV sector has remained both. 

Nous has worked closely with the HIV sector over many years, helping to develop national and organisational strategies, review operating models, review surveillance approaches, explore collaboration opportunities and facilitate sector consultation and workshops. In that time, we have continually been impressed by the capacity of the sector at large and its NFPs specifically to adapt, particularly in the context of an evolving epidemic.

What lessons can other health NFPs learn from such a sector and its success? With HIV NFPs facing new changes and challenges of their own, we have taken a step back to consider what has made the sector one of the stand-outs in the NFP space.

Australia’s HIV epidemic has drastically changed over the past decade, with the promise of effective elimination of transmission now more tangible than ever. This is a remarkable achievement given the virus continues to affect millions globally. It is an achievement that has been driven by a range of successes, not least of which include:

• Community-led health promotion and peer-led interventions. This principle has been a central feature of the response since the outset and ensures community voice is enshrined at all levels. At the time the epidemic started a community-led response was a radical idea given the taboo nature of sex, homosexuality, sex work and drug use in the 1980s.
• Sustained partnerships within and between government, community, healthcare and research. Each player has a clearly defined role that contributes to a collectively comprehensive response. Critically, government is not just a funder but has a proactive participatory role in the response.
• Proactive advocacy from peak NFPs across the parliamentary divide. This invites ongoing government commitment often with multipartisan endorsement. HIV sector NFPs have maintained strong and healthy relationships with government, routinely meet with the opposition parties and have a seat at the table in almost all conversations and are viewed as key advisers with a wealth of corporate and cultural memory to leverage.
• Adoption of biomedical technological innovations such as preexposure prophylaxis (PrEP), new treatments that drive high adherence and more diverse methods of testing. This has included continuous clinical and social research to understand how these innovations can be effectively taken up by individuals and communities.

Such successes are of course welcome and have ensured the health needs of affected communities remain at the heart of the response. However, they have paradoxically presented two problems for NFPs in the sector, both of which emphasise that maintaining the status quo is not always a viable option.

First, the epidemic’s priority populations, and therefore kinds of responses and approaches that the sector must undertake, have evolved. While there have been considerable declines in HIV notifications among Australian-born gay, bisexual and other men who have sex with men (GBMSM), overseas-born GBMSM now account for about half of diagnoses and are disproportionately overrepresented in annual notifications. Meanwhile, heterosexual notifications have remained steady (rather than declining). Such epidemiological changes have invited new challenges for the sector to work with less familiar, often culturally diverse, communities.

Second, declines in the size of Australia’s epidemic raise existential questions for NFPs that were historically focused primarily on the HIV prevention response. The risk of waning political commitment in the face of a ‘mission accomplished’ sentiment is part of the paradox of successful prevention – that doing well means the very thing you exist to address might lose traction and relevance. This is not just problematic for the existence of the NFPs themselves, but also contributes to narratives around a supposed ‘endpoint’ in the epidemic that can erase the experiences of people who live with HIV today. These problems are by no means exclusive to the HIV sector; many NFPs face the lingering possibility of reduced funding. Nonetheless, they can disrupt the foundational mission and vision of NFPs.

Larger HIV sector NFPs who lead on prevention efforts, such as ACON, Thorne Harbour Health and (more recently) Health Equity Matters grappled with these problems early and used them as a catalyst to evolve into other aspects of LGBTQIA+ health as well as the broader health challenges faced by the populations they traditionally serve (such as people who inject drugs). Critically, all of this was done while ensuring history and legacy continued to inform the path forward, with HIV remaining central to their role and purpose. This was a natural and sensible broadening of scope, given that most people affected by HIV are part of the LGBTQIA+ community, the organisations were originally created by those communities and the communities themselves have matured and grown.

This strategy has been highly successful and the organisations now work across many areas of LGBTQIA+ health including but beyond their traditional focus points, such as cancer control, mental health, alcohol and other drugs, domestic and family violence, women’s health, disability and many more. Such strategic shifts have involved leveraging existing strengths to establish new relationships and collaborations with each other and with research, healthcare and government to deliver greater value to communities.

Flexibility and evolution are necessary futures for health NFPs in Australia as they seek to remain relevant and continue to support communities. NFPs in the HIV sector are by no means the only ones that have undergone change. For example, Nous has worked extensively with breast cancer NFPs as they have shifted into survivorship and long-term support due to increasing survival rates.

Below we identify four lessons from our work with HIV sector NFPs that other NFPs might consider as they evolve. While we take great pride in knowing that we have supported the HIV sector achieve some of its evolutionary goals, our time with these organisations has shown to us the high-functioning and cooperative and nature of the sector at large, which we believe is a great case study that demonstrates success.

First, collaboration between NFPs is often more effective than competition. HIV sector NFPs have traditionally prioritised collaboration with each other where it is sensible. This is the case even in the context of their more recent evolution, and we have seen first-hand great sector-wide consultation between these NFPs and their partners as they have sought to evolve. Collaboration has not always been smooth sailing – there have been complex negotiations and challenges to overcome.

These complexities can make it tempting to view alike NFPs as competitors, particularly when you might be contesting the same pool of funding. However, collaboration has benefits in that it can present a united front to community and funders and support a holistic response to addressing community need. Nous has successfully used our Collaboration Framework with many NFPs to help them negotiate a way forward with potential collaborators. 

HIV sector organisations in particular have been supported by many of the enablers in the image that drive collaboration. This has also been supported by the federated model of peak national organisations like Health Equity Matters, who bring committed community leaders and organisations together under the capstone enabler of mutual goals and purpose. However, there can be fragility in this informal collaboration where it relies solely on personal relationships; sometimes formal structures and arrangements can sustain collaboration over time.

Second, consider your scale and reach as your identity evolves. Some larger HIV sector prevention organisations spent much time in the late 2010s searching their hearts and minds to explore their evolving strategic purpose and intent. There was a rich history and legacy in the HIV response that was important to respect and maintain, and it needed to inform but not drive decision-making as new paths forward were carved. Staying true to original mission did not preclude keeping abreast of relevant developments and realities and being proactive about change.

There are many evolution questions you must ask yourself that are specific to your individual context. What is the community or public health need for us to evolve? How acute is the need and therefore how quickly must we evolve? What kind of growth does our evolution necessitate – into new populations, new health issues, new regions and/or new services? What resources, structures, processes, capacity and capabilities will we need to evolve?

Whatever the answers, evolution must be strategic. We sometimes see NFPs evolve as a result of winning ad hoc, often short-term grant funding. This sees their scope broaden for a while to deliver a program, before shrinking back to original scope and size. This kind of temporary ballooning can have negative impacts – service continuity becomes fractured for communities, who can feel underserved of frustrated when access is removed for them, and staff can find the job insecurity and workload fluctuations challenging.

Third, find more flexible funding. It’s easy enough to say this; much harder to action, and HIV sector organisations continue to grapple with this reality. While their growth has invited more funding to meet their expanded scope, this has not necessarily resulted in more flexible funding.

It is the (unfortunate) reality for NFPs that secure, ongoing funding can be hard to come by. Many smaller and mid-size NFPs rely on tied grant funding and/or philanthropy to operate. These are not necessarily secure or flexible sources over time. They can be particularly insecure in the context of changing public health, where there is a threat that government will not prioritise your health issue or population(s) in the future. Many NFPs must now seek diversified funding, such as through service delivery or fee-for-service offerings, and/or in areas where they have traditionally been less successful. Doing so requires a dedicated, forward-looking funding strategy that is aligned to your purpose and scope, with clear intent about what funds to seek/not seek and how. Ongoing advocacy and maintenance of relationships with key funders must underpin this funding strategy. In addition to senior leadership, middle management should be included as key people involved in building and maintaining these relationships, to ensure continuity as new leaders emerge.

Fourth, stay nimble to pivot where emerging need arise. HIV sector NFPs showed great adaptability to address public health threats such as COVID-19 and mpox when they emerged, even in the absence of targeted funding. This was enabled by pithy use of available funds and resources, leveraging of timely surveillance data (in collaboration with research institutes) and commitment to supporting the evolving needs of communities. That nimbleness has since resulted in additional program funding for some of these NFPs, demonstrating the benefit of being on the front foot to address need rather than waiting for funders to identify their priorities.

HIV sector NFPs have positioned themselves to thrive well beyond their forty-year history. They have demonstrated remarkable agility in responding to changes both unforeseen and brought on by their own success. By expanding their focus beyond HIV to encompass broader aspects of LGBTQIA+ health, these organisations have maintained their relevance and secured new avenues for support. Their sustainability and continued impact provide a useful blueprint for other NFPs facing similar pressures to evolve.

Get in touch to discuss how we can help your not-for-profit organisation adapt to change and remain competitive.

Connect with Steven Philpot, Steven Hodge, and Michael Stewart on LinkedIn.