Image supplied by the HIV Futures project team

HIV Futures and PozQoL in Australia’s HIV policy

Australia’s approach to HIV policy has evolved dramatically over the decades. Today, the focus is not only on biomedical outcomes but also on improving quality of life (QoL) for people living with HIV (PLHIV). At the heart of this transformation is HIV Futures, a research initiative that has documented the experiences of PLHIV since 1998 . Partnered with PozQoL, HIV Futures helps shape Australia’s National HIV Strategy, supporting policies for the wellbeing of PLHIV across the nation.

By capturing insights from HIV Futures and measuring QoL through PozQoL, Australia’s HIV policy can track progress on a deeper level. This post explores HIV Futures’ impact as a foundation for quality-of-life research, PozQoL’s contribution as a targeted measurement tool, and their combined influence on national and state-level HIV strategies.

Tracking life beyond treatment for PLHIV

The introduction of highly active antiretroviral therapy (HAART) in the 1990s marked a turning point for PLHIV. Suddenly, a terminal diagnosis became a manageable, chronic condition, opening up new—and often unexpected—futures. For many, expectations of an early death were replaced with the chance to live long-term, raising new questions around identity, purpose, and support. HIV Futures was launched in 1997 to document these complex realities, capturing how PLHIV navigated this new chapter.

Initially, HIV Futures focused on health outcomes, access to treatment, and the physical effects of HIV. As the survey evolved, however, it expanded to include broader needs, like mental health, social connections, financial stability, and stigma. These insights revealed that for PLHIV, thriving required far more than medical care. Through HIV Futures, the voices of PLHIV were brought into national HIV policy, ensuring quality of life would be central to Australia’s HIV response.

PozQoL’s development: a targeted tool for quality-of-life measurement

As HIV Futures continued collecting data, it became clear that a targeted tool was needed to quantify quality of life for PLHIV. PozQoL provided a streamlined, reliable way to measure QoL across four main domains: concerns about physical health, psychological wellbeing, social connectedness, and functional capacity. PozQoL allows HIV Futures—and the services that support PLHIV—to assess these dimensions consistently.

By using PozQoL, HIV Futures helps researchers, policymakers, and community support organisations to gain a precise understanding of how PLHIV are doing across key areas that affect their daily lives. This not only guides service provision but also supports strategic planning focused on the overall wellbeing of PLHIV.

The national impact of HIV Futures and PozQoL data

HIV Futures and PozQoL have had a significant influence on Australian HIV strategy, helping to shift the focus beyond biomedical outcomes to include QoL for PLHIV. Their impact is evident in national targets, strategic planning, and the ongoing evaluation of Australia’s HIV response.

One major milestone was the Eighth National HIV Strategy (2018–2022), which for the first time included a national benchmark: 75% of PLHIV should report a positive QoL. This landmark goal acknowledged that biomedical outcomes alone are not enough. Quality of life became a measurable goal in Australia’s HIV response, guided by data from HIV Futures and PozQoL.

The influence continued into the Ninth National HIV Strategy (2023–2030), which raised the national quality of life target to 95% of people living with HIV. This shift was informed in part by findings from HIV Futures 10, which reported that 71.8% of participants had “good” quality of life in 2022. By incorporating PozQoL into the survey, HIV Futures provided a clear, validated measure to assess progress—reinforcing the value of standardised QoL monitoring in shaping national policy.

PozQoL data continues to play a crucial role in tracking this target, providing a snapshot of how PLHIV experience life across each domain. It enables policymakers to see where the strategy is succeeding and where more support is needed. By focusing on QoL as an indicator, PozQoL aligns HIV care with the broader wellbeing of PLHIV, helping the national HIV strategy stay responsive and relevant.

HIV Futures and PozQoL in state-level strategies and peer-led organisations

Beyond national policy, HIV Futures and PozQoL also play an important role in state-level HIV strategies across Australia. States like New South Wales and Western Australia have incorporated QoL targets into their strategies, recognising HIV Futures and PozQoL data as essential tools for monitoring and improving quality of life outcomes.

Additionally, state-based, peer-led organisations that support PLHIV rely on HIV Futures data to inform and guide their work. These organisations use insights from HIV Futures to address specific community needs, advocate for targeted services, and implement programs that support PLHIV at a more personal level. By using PozQoL data in their everyday work, peer-led groups can make evidence-based decisions, enhancing support at both individual and community levels.

PozQoL as a long-term tool for monitoring quality of life

PozQoL’s role within HIV Futures extends beyond today’s strategy goals. It is a long-term tool designed to monitor quality of life consistently, providing insights that can adapt to the evolving needs of PLHIV. As the lives of PLHIV change, PozQoL helps track shifts in QoL across psychological, social, and functional areas, allowing services and policies to adjust as new challenges arise. By consistently assessing QoL, PozQoL ensures that PLHIV are not only surviving but thriving.

This long-term view supports Australia’s commitment to a sustainable HIV response, allowing policymakers, researchers, and service providers to anticipate changes and plan proactively for the future. PozQoL is a tool for today’s strategy and tomorrow’s HIV care planning, helping quality of life remain a priority.

HIV Futures and PozQoL: A foundation for future-focused HIV policy

HIV Futures has played a pivotal role in reshaping how Australia responds to HIV, placing lived experience and quality of life at the centre of national policy. By consistently capturing the voices of people living with HIV, it has shifted the focus from treatment outcomes alone to broader wellbeing, ensuring that care is grounded in real-world needs.

PozQoL supports this mission by offering a validated, scalable way to track health-related quality of life. Its inclusion in HIV Futures strengthens the survey’s ability to influence strategy, inform services, and guide national benchmarks. As the Ninth National HIV Strategy sets a new target of 95% of PLHIV reporting good QoL, this kind of detailed, consistent data becomes even more essential.

With HIV Futures, Australia’s HIV response is better equipped to plan for the future—ensuring that policies and programs continue to evolve with the needs of people living with HIV.

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This story was originally published on 3 September 2021 under the title ‘PozQoL informs the Australian National HIV Strategy through the HIV Futures Study’, authored by Dr Jennifer Power. It has been updated to reflect new developments.