Communities, policies and the enabling environment

HIV Australia | Vol. 13 No. 1 | April 2015

By Ian Muchamore

The Seventh National HIV Strategy has laid out a set of bold goals and targets to turn around the tide of rising infections and bring the HIV epidemic in Australia to an end.

The ambition to virtually eliminate HIV transmission by 2020 is underpinned by multiple targets built on UNAIDS goals, which include increasing HIV treatment uptake by people with HIV to 90 percent.

The adoption of high-level policy goals and targets has promoted a much-needed deep and frank discussion between policy makers, clinicians, researchers and communities.

Key agenda items include what works, what doesn’t, what do we need to do differently and how do we do it?

Whether all of the national goals and targets are as SMART (specific, measurable, achievable, relevant and time-bound) as they might be is debatable.

However, this vision and rhetoric has (for the most part) been enthusiastically embraced and accepted by those directly affected by the epidemic – especially by people living with HIV.

The focus of much of this engagement and excitement has been built around new and reshaped biomedical treatment and prevention tools, supported by an impressive body of research studies and evidence.

The case for grasping and implementing these options in a combination prevention approach is also interdependent upon addressing longstanding system challenges – hard issues that are often bundled into the catchall idea of ‘the enabling environment’.

Long-established structures and agencies in the health and community sector are under pressure to innovate and evolve. Challenges include building community engagement and developing effective messaging and communication. New models of service delivery will require coordination and fresh thinking about what our partnerships look like.

Naming and addressing HIV stigma is central to the successful implementation across all these innovations. Anti-stigma efforts are required within and beyond directly affected communities, within specialist and general health services and beyond the policy domains of government health departments.

Getting anywhere near a 50% reduction in the number of HIV transmissions by 2020 will require Australia to shift gear and speed up introduction of new technologies.

Rapid and home HIV testing options are considered key innovations which will support higher HIV testing rates. More regular and better targeted testing among affected communities is essential to reducing the number of people living with HIV who are as yet undiagnosed. Minimising the time between infection and treatment will also have a prevention benefit.

After lengthy expert and community dialogue, treatment as prevention (TaSP) is now accepted as a vital component of the response. A major step up will be needed in the proportion of people with HIV who are on treatment and with viral suppression, if envisaged reductions in community viral load are to deliver the prevention dividends.

Pre-exposure prophylaxis (PrEP) is the latest development in the field of biomedical HIV prevention. The merits of PrEP as an effective prevention tool for individuals from populations at high risk are clear.

How PrEP can be made more accessible and affordable is less clear, as is the potential impact on the epidemic following wider availability and targeted uptake of PrEP.

Understanding the impact of bold target setting, and demonstrating the potential of a combination prevention approach using real world results require us to move beyond the controlled and closely monitored environments of trials and studies.

At the same time, we also need to tackle the tough aspects of the enabling environment. Actions and objectives expressed in the national blood borne virus strategies, such as ‘eliminate stigma and discrimination’ and ‘addressing legal barriers’, generally fail the SMART test.

These concepts are hard to grasp, define and measure, and the underlying steps to reach them can be contestable.

Australia is one of about 190 countries that have passed motions and political declarations in the United Nations that commit us to the Greater Involvement of People Living with HIV/AIDS (GIPA). These principles of inclusion – more recently refined as ‘meaningful involvement’ (MIPA) – were first proposed in 1994 and have been supported for over 20 years.

UNAIDS policies specifically recommend that all governments adopt such participation and involvement principles in their HIV strategies and that they also ensure they measure and evaluate their success in meeting best and inclusive practices.

The latest National HIV Strategy specifically acknowledges that the meaningful involvement of people living with HIV is essential across both programs and policies. Despite the best intentions of governments, health professionals, researchers and community bodies, an occasional reminder is warranted so that the principle is consistently implemented.

Meaningful community involvement matters – it means a better and stronger response.

Addressing the enabling environment requires community advocacy, partnership and political leadership. Pictured: Martin Foley MP, Victoria’s first ever Minister for Equality, together with ENUF supporters at the ChillOut Street Parade, Daylesford, Victoria, March 2015.

Assessment tools and best practice guidelines such as Renewing Our Voice, the HIV Code for NGOs,¹ should surely be part of the evidence and indicators we use to ensure that the high-level commitments to meaningful involvement of people living with HIV are not just rhetoric.

Examples of failure to consider the importance and value of meaningful involvement of people living with HIV in program development and delivery remain too common.

However, we need to celebrate those cases where we have learnt from our experiences and reshaped best practice.

In November 2013, a tertiary health service used by many HIV-positive people in Victoria announced major changes to the delivery of its HIV health and care services, commencing with immediate effect.

Meaningful engagement of people living with HIV was completely lacking in the proposal and, unsurprisingly, the lack of such involvement prompted rather negative community sentiment.

Ultimately, the proposal was withdrawn and a set of fresh proposals is now being prepared with the involvement of a community advisory committee which includes five people living with HIV from diverse backgrounds, as well as clinicians and service managers.

This group is chaired by the CEO of the health service and will hopefully be an example that demonstrates best practice in working collaboratively. The outcome should be more patient-centred health services to better meet the needs of HIV-positive people.

In December 2014, a new state government was elected in Victoria with a platform and mandate to develop a fresh HIV action plan, deliver additional sector resources and bring in key commitments made during AIDS 2014.

Community advocacy and partnership has put HIV criminalisation in the spotlight. In July 2014 the AIDS 2014 pre-conference, Beyond Blame: Challenging HIV Criminalisation highlighted local and global examples of the stigma and discrimination resulting from unjust criminal laws that impede the public health response.²

A local advocacy partnership to reform how HIV exposure and transmission is treated in criminal law has been led by Living Positive Victoria and the Victorian AIDS Council.

The clear message is that HIV should be treated as a public health issue, not a criminal matter. Broad community support and a coalition of organisations and experts have gathered behind the Repeal Section 19A campaign, and both major political parties have accepted there is a clear case for reform.

The upcoming challenge will be to see this taken to the Victorian Parliament in the coming months, where we hope to see the repeal of this discriminatory law. This could send a powerful anti-stigma message to the wider community.

Specific actions such as law reform advocacy designed to enhance the enabling environment are generally not made explicit in national and state strategies.

Addressing such complex issues requires political leadership and commitment beyond the health sector, with the support of champions and advocacy from multiple sectors.

The response and involvement of people living with HIV – those most directly affected – is essential for agenda-setting and for initiating innovative actions which are likely to make the UNAIDS targets achievable.

References

1 Renewing our voice – Code of Good Practice for NGOs responding to HIV/AIDS is available at: www.who.int

2 For further information on the Beyond Blame pre-conference see: www.hivjustice.net

Ian Muchamore is President of Living Positive Victoria and a public health researcher at Deakin University.