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NAPWHA launches seminal reports providing framework for stigma, resilience and living longer with HIV in Australia

NNAPWHA staff and authors launch resources at Special General Meeting on 3 May 2019 (Photo by Roy Wilkins)

NAPWHA have launched two seminal reports – the Stigma and Resilience Framework and HIV and Ageing in Australia – The New Frontier report at its annually-held special general meeting to members organisations representing community-based HIV organisations from all Australian States and Territories; and associate members representing New Zealand, the National Network of Women Living with HIV (Femfatales), and Positive Aboriginal Torres Strait Islander Network (PATSIN).

Stigma and Resilience Framework

“NAPWHA is thrilled to have had the opportunity to lead the creation and development of this first ever national strategic framework to address HIV stigma and to build the resilience capacity of people living with HIV – and as such, it is a tremendously important document,” said Cipri Martinez, NAPWHA President in his foreword message of the NAPWHA Stigma and Resilience Framework.

The Framework is the outcome of a substantive consultation process across the community living with and affected by HIV. Recommendations for actions were drawn from several in-depth interviews with people who represent a broad diversity of backgrounds and HIV lived experiences – including Aboriginal and Torres Strait Islander people, people who inject drugs, transgender and gender diverse people, and people from mobile and/or migrant populations.

“We hope that the Framework will provide valuable guidance with a whole-of-sector approach to anyone involved at all levels of the HIV response,” said co-authors, Kirsten Machon and Brent Allen. “Ensuring and enabling people to not only live with HIV, keep well through accessing testing, treatment and care; but also to foster higher levels of psychosocial wellbeing, so that they live well and flourish – is the key end goal.”

The Framework provides encouragement for government decision makers and policy developers to pursue consistent and enabling policy and legislative environments to achieve best practice and stronger health outcomes, by utilising the interlinked twin goals of building personal resilience and eliminating stigma and discrimination.

HIV and Ageing in Australia – The New Frontier

HIV and Ageing in Australia – The New Frontier is a seminal report by NAPWHA – providing a solid evidence base of the most current and comprehensive collation and review of international and Australian literature on HIV and ageing to-date,” says Dr John Rule, NAPWHA Senior Research Manager.

The life expectancy of Australians living with HIV has been steadily increasing and is approaching that of the general population. Many people living with HIV are already dealing with the changes and challenges of growing older, and many more will be doing so in coming decades.

“For people with HIV, and for community organisations that serve and represent them, living simultaneously with HIV and with the consequences of ageing is a new frontier,” said author, Ronald Woods.

Initiatives to promote successful ageing for people with HIV, including those that support treatment adherence, preserve health and delay disease progression, rely on having in place a strong service delivery framework.

For NAPWHA, this Report informs the next phases of our nationally focused work. Initiatives identified in the document include the development of peer training materials that focus on the intersection of living with HIV and living longer with HIV; and also, the promotion of models of geriatric care in Australia.

NAPWHA acknowledges the partial funding support from Queensland Positive People which led to the production of HIV and Ageing in Australia – The New Frontier. Direct feedback on earlier document drafts of the Report were provided by the Health Protection Policy Branch (Office of Health Protection), the Australian government Department of Health and Department of Social Services.

Resilient ageing and end-of-life planning among people living with HIV

As part of the 2021 Australian Social Policy Conference, a number of leaders, representing a diverse community service provision network, were invited to offer their insights and further case studies to improve ageing and aged care policy and practice for people living with HIV (PLHIV).

“Given the high numbers of people who will be ageing and living longer with HIV, we have identified HIV and ageing as one of the new frontiers of the HIV epidemic,” said NAPWHA National Research Manager, Dr John Rule, speaking of the NAPWHA resource published in 2019.

“It is urgent that health and social policy responses be developed to  support the needs of this group. In this #ASPC session, presenters from various Australian jurisdictions report on service responses that have a unique HIV peer-support component.”

This session was chaired by Associate Professor Limin Mao (UNSW Centre of Social Research and Health) with the video recording released with kind permission to NAPWHA allowing for further dissemination to our community-based PLHIV organisational members across all Australian States and Territories, and for those who were unable to attend.

The conference, hosted by the UNSW Social Policy Research Centre and held online from 25 October to Friday 5 November, addressed contemporary issues in the context of ongoing health and social policy themes with session conveners from across Australia.

PLHIV ageing and end-of-life planning: a researcher’s perspective

Video:  Dr Kerryn Drysdale (Centre for Social Research in Health, UNSW Sydney) presenting on an Australian Department of Health-funded project, entitled ‘Resilient Ageing and End-of-Life Planning among people living with chronic hepatitis B, chronic hepatitis C or HIV (BBV-RAEL)’. Key findings focusing on HIV, ageing and end-of-life planning will was presented, based on in-depth interviews and the online Delphi consensus building with the project’s key stakeholders.

PLHIV ageing and end-of-life planning: what’s the national policy agenda?

Video:  Dr John Rule (NAPWHA) presenting on ‘PLHIV ageing and end-of-life planning: what’s the national policy agenda?‘   

Preparing the community for ageing and aged care service engagement

Video:  Joel Murray (ACON) presenting on ‘Preparing the community for ageing and aged care service engagement‘.

PLHIV ageing and aged care service provision: role of peer-navigators

Video:  Chris Howard (Queensland Positive People) presenting on ‘PLHIV ageing and aged care service provision: role of peer-navigators’.

Ageing and aged care: serving a diverse PLHIV population groups

Video:  Jane Costello (Positive Life NSW) presenting on ‘Ageing and aged care: serving a diverse PLHIV population groups‘. 

The role of peer-navigation in PLHIV support services: needs and gaps

Video:  Neil Fraser (Positive Life NSW) presenting on ‘The role of peer-navigation in PLHIV support services: needs and gaps‘. 

Highlights from AIDS2022

Montréal, Canada and virtually  |  29 July — 2 August

The 24th International AIDS Conference #AIDS2022 was held in Montreal, Canada, and virtually. Convened by IAS – the International AIDS Society, the annual event unites scientists, policy makers and activists to galvanize the scientific response, build global solidarity and enhance human dignity for all those living with and affected by HIV. NAPWHA has compiled a selective list of program highlights that may be of interest for our communities below. Also access NAM aidsmap: The official scientific media partner for the conference.

U=U Global Summit

Professor Sharon Lewin address as she takes the reins as President of the IAS

Except:  I look forward to IAS 2023, the 12th IAS Conference on HIV Science, taking place next year in Australia. I had the honour of serving as Local Co-Chair at AIDS 2014 in Melbourne, a memory cast in shadow by the 280 lives that were lost on flight MH17; many were IAS Members, including former IAS President Joep Lange.

It felt impossible to hold a productive meeting after such a tragedy, just as the challenges of today can feel insurmountable. But the secret of success of the HIV movement has always been how we come together – diverse communities, diverse disciplines, from all corners of the world.

Together, harnessing the strength, passion and talent of this movement, we will end this epidemic once and for all.”

HIV Cure Research: Rapportage by Jillian Lau

At AIDS2022, Infectious Diseases doctor, Jillian Lau, who has been involved in HIV cure clinical research at Alfred Health (Monash University) based in Melbourne, and completing a PhD in this field, reported back about HIV cure research being presented through the @HIVCureAU Twitter handle.

HIV Criminalisation and HIV Law: Rapportage by Paul Kidd

At AIDS2022, research and action on HIV criminalisation and HIV law were well represented, summarised in this twitter thread by @PaulKidd.

The Silver Zone: a Networking Zone for Older Adults Living with HIV

Globally, the face of HIV is an ageing one. Although in supportive systems people are living longer with access to effective treatments, many older adults living with HIV and HIV Long-Term Survivors are coping with the lasting impact of untreated HIV, age-related comorbidities and loss. In the era of COVID-19 and “working to end the HIV epidemic”, many feel isolated and uncertain about the future.

The Silver Zone in the AIDS2022 Global Village is a place for older people living with HIV to re-engage with the HIV community and follow the science on HIV and ageing; to feel included and celebrated.

Bi+ People Living with HIV: Positive Networking Zone

Women’s Networking Zone

Breast/chestfeeding guidance and advocacy

PozQoL (Quality of life among people with HIV) and AusQoL (the Australian Accord)

Panel discussion on Person-centered Care

‘Key Populations’

Long-acting ARV Treatment

Video:  What’s new in long-acting formulations of HIV medications for prevention and treatment? CATIE (Canada’s source for HIV and Hepatitis C information) spoke to Professor Chloe Orkin at Queen Mary University of London at this year’s International AIDS Conference who covers the new data on long-acting treatment, and their thoughts on the drug pipeline and on equity of access.

Could long-acting injectable cabotegravir and rilpivirine be self-administered? New formulations and alternative injection sites might allow administration of this long-acting treatment. Liz Highleyman reports back results from two studies which were presented to the 24th International AIDS Conference (AIDS 2022), which was held in Montreal, Canada.

HIV/AIDS in the Asia-Pacific