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Join a ‘Townhall’ webinar event: Have your say about what good quality of life means for people living with HIV in Australia

Quality of life for people with HIV is often presented as an afterthought—the ‘fourth 90’ after HIV prevention and treatment goals are met. A ground-breaking international study called Positive Perspectives 2 found that Australia leads the world on treatment satisfaction, and yet people with HIV still report much lower general and sexual wellbeing.

We invite you to join us on Wed 23 June at 6:30 PM AEST (Sydney & Melbourne time) for a town hall-style conversation to ask:

What does good quality of life mean for people with HIV in Australia?

We’ll hear from five panelists — all TIM (The Institute of Many) members speaking from their own lived experience as they engage with the Positive Perspectives 2 findings.

In a discussion moderated by The Institute of Many co-founder Nic Holas and NAPWHA’s Charlie Tredway, you can share your own story, and pose questions to the panel about what quality of life means for people with HIV in 2021.

The discussion won’t go nowhere: Your voices will be incorporated in an Australian Community Accord that will help shape PLHIV care and advocacy as well as directly feeding into NAPWHA’s programming as we advocate for ‘Quality of Life for All.’

This event is supported by ViiV Healthcare.

Artwork by Daniel Cordner.

Community resource published to support women living with HIV in Australia on breastfeeding options is released in conjunction with new clinical guidance

Video:  Dr Fiona Bisshop speaks from a NAPWHA and Positive Women Victoria-hosted community online forum in May 2021, where women living with HIV were invited to come and learn about the latest advice and guidance on breastfeeding from the community resource Breastfeeding for women living with HIV in Australia.

Sector Release

The National Association of People with HIV Australia (NAPWHA) — in shared collaboration with Positive Women Victoria, is pleased to publish a new community resource entitled Breastfeeding for women living with HIV in Australia.

“The information in this community resource is provided for women who are living with HIV — who are pregnant or thinking about becoming pregnant,” says Heather Ellis, Communications Officer for Positive Women Victoria, who is also one of the co-editors of the community resource.

To the reader she states, “You may be thinking about breastfeeding your baby, and whether it is safe or advisable. This community resource aims to assist with understanding the issues around breastfeeding or formula feeding.”

Heather Ellis, who will represent as part of a panel at the ASHM 2021 Virtual Conference on 8 September 2021 continues, “We hope after reading this information, women will feel encouraged by the news that although medical and health experts agree that formula feeding is still the safest option, breastfeeding is increasingly being recognised as an option that may be open to some women living with HIV.”

This community resource will also be released alongside an exciting issue of new guidance for healthcare providers with regard to the infant feeding options available to people living with HIV in Australia. Published by the Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine (ASHM) — the peak national organisation representing the clinical HIV workforce, the clinical guidance document The Optimal Scenario and Context of Care, will feature some highlighted sections from the community resource. [Note: This hyperlink will go live on 8 September 2021].

Of this clinical guidance to be launched at the ASHM 2021 Virtual Conference, Chair of Femfatales Kath Leane, HIV positive woman and mother of 34 years, offers her endorsement. “This guide offers balanced information that will not only empower and support women to safely consider their options but helps remove that stigma and guilt.”

In 2017, Femfatales (NAPWHA National Network of Women Living with HIV) tendered a submission to the ASHM of a Review of ASHM Antiretroviral Guidelines – US DHHS Guidelines with Australian Commentary: HIV-Infected Women with regards to postpartum management and infant feeding. The review identified important gaps that existed in the evidence-base and information about the risks and benefits.

Breastfeeding for women living with HIV In Australia was an initiative which then continued to build upon and respond to this evidence-base, developed and produced under the NAPWHA HIV Health Literacy Framework project.

“This NAPWHA framework adopts an approach where community-led participatory action research underpins all of the health literacy initiatives produced,” explains Sarah Feagan, one of Community Advocates of the NAPWHA project.

“The meaningful involvement of women living with HIV/AIDS (MIWA) is a key feature of women-centred HIV care. It was imperative that the development of this community resource was led by HIV community advocates, and that it was then further informed by networks of HIV peers through a consultative process. This ensures that the development of any health promotion is culturally appropriate and tailored for women.”

The NAPWHA Health Literacy Framework project (2019-2021) was made possible through the funding support of ViiV Healthcare Australia.

NAPWHA and Positive Women Victoria encourage community members to use information contained in the community resource Breastfeeding for women living with HIV In Australia to start a discussion with your doctor or health care team.

For more information please contact:

Heather Ellis (Communication Officer, Positive Women Victoria)
Email:   comms@positivewomen.org.au or phone:   0425 720 193

Saysana Sirimanotham
(Communication and Community Engagement Officer, NAPWHA)
Email:  saysana@napwha.org.au or phone:  0424 898 698

Video:  This recording is of the session at the joint virtual Australasian Sexual Health and HIV&AIDS Conference on 8 September 2021 which included a panel of international and domestic experts to present upon the challenges and opportunities that exist in the area of infant feeding options for people living with HIV specifically in resource-rich countries that often have conflicting advice to what is provided to people living with HIV in resource-poor settings.

Hosted by:  Brent Allan (ICASO) and Kirsty Machon (Positive Women Victoria)
Speakers:  Dr Lucy Stackpool-Moore (IAS), Jessica Whitbread, (HIV Rights Activist), Dr Michelle Gilles (Monash HIV, Monash Infectious Diseases), Heather Ellis (Positive Women Victoria)

Tweet:  In 2017, Femfatales (NAPWHA National Network of Women Living with HIV) tendered a submission to the ASHM of a Review of ASHM Antiretroviral Guidelines – US DHHS Guidelines with Australian Commentary: HIV-Infected Women with regards to postpartum management and infant feeding. The review identified important gaps that existed in the evidence-base and information about the risks and benefits. In 2018, Femfatales assisted launching the released the ICASO ‘Understanding U=U for Women Living With HIV’.

Treatment Outreach Network 2022 meeting held virtually

NAPWHA’s Treatment Outreach Network – a membership of professionals from Australian State and Territory peer-based organisations and AIDS Councils, held their bi-annual formal meeting via video conferencing on May 25, 2022. The previous Treatment Outreach Network 2021 meeting was also held online, due to COVID-19 travel complications during that period.

Meeting agenda

TimeSession
11 – 11.15amAcknowledgement of Country
Brief introductions
11.15am – 12.00pmInjectable Treatments Availability in Australia – Presentation and Q&A
Jessica Kent – Associate Director, Medical Science Liaison (ViiV Healthcare Australia) NB This is not a ViiV Healthcare session.
12.00 – 12.15 pmBreak / 15 minutes
12.15 – 12.45pm NAPWHA Research Literacy and Treatment Initiative – Update session from last TON Meeting 2021– Dr Jeanne Ellard – NAPWHA
12.45 – 1.15pmNAPWHA’s Cognitive Health initiative – An international collaboration – Presentation and Q&A
Associate Professor Lucette A. Cysique, UNSW and St. Vincent’s Hospital
1.15 – 1.30pmMeeting review and evaluation
1:30pmMeeting close

Long-Acting Injectables in Australia

In this presentation to the Treatment Outreach Network, Ann Maccerrone and Jessica Kent of ViiV Healthcare Australia present an overview of emerging long-acting HIV injectable antiretroviral therapy. Charlie Tredway, Online Moderator of TIM (The Institute of Many) follows with a community perspective. The session concludes with a Q&A.

In this presentation, Jessica Kent overviews:

  1. ViiV treatment pipeline
  2. Unmet need
  3. Cabotegravir (CAB) plus Rilpivirine (RPV)
  4. Patient reported outcomes
  5. Frequently asked questions and Q&A

Other references:  See also CROI 2022: Injectable CAB/RPV-LA results after three years follow-up reported in i-base (1 March 2022)

Cognitive health for people living with HIV

In this presentation to the Treatment Outreach Network, Associate Professor Lucette A. Cysique – Senior Researcher and Neuropsychologist at
St. Vincent’s Hospital Centre for Medical Research (Sydney, NSW) presents an overview of an emerging research area for Cognitive Health for People living with HIV

In this presentation, Associate Professor Lucette A. Cysique overviews:

  1. What is cognitive health and associated guidelines
  2. Cognitive health for people living with HIV; how to talk about it
  3. Cognitive Aging: Is it HIV or simply aging? What is the evidence?
  4. Successful aging in people living with HIV
  5. Risk factors for cognitive decline and PLHIV; and how to talk about it
  6. Acting now or wait?
  7. How to get a shared understanding of issues and what to do about it: A proposed framework
  8. Proposal: Global connections, website and survey
  9. Some resources: I am experiencing cognitive difficulties; what can I do (referral pathways, etc)

Other references:  Lucette references international work stemming from the National AIDS Treatment Project and HIV & Aging Research Project – Palm Springs (HARP-PS); and an emerging project in-development with University of Southern Queensland (USQ).

About the NAPWHA Treatment Outreach Network

The Treatment Outreach Network (TON) is a formal collaboration of HIV community sector professionals working to optimise the overall wellbeing of People Living with HIV (PLHIV) in Australia, by providing a high standard of information and current research on issues of health and treatments for HIV.

TON’s role is to provide consistent and up-to-date information to HIV sector professionals working at state and territory HIV community organisations as well as PLHIV. NAPWHA maintains a range of partnerships to ensure the aims of the network are met. The network meets formally once per year and informal communication occurs throughout the rest of the year to continue TON’s work.

Quantifying unmet HIV treatment needs: Peers explain research on TikTok

Did you know your relationship with your doctor can have a direct impact on your health? This explainer was made by people living with HIV—Anth, Beau and Heather—and was made to help share some of the messages from a research paper that explored the unmet treatment needs among people living with HIV in Australia and other countries.

Access the research paper through the link buttons below. You can also find out more (below) about the peers behind the ‘Peers Explain’ TikTok channel, and read about how this community-led knowledge translation initiative which references the ViiV Positive Perspectives 2 Survey came about.

About the initiative

Meet the Peers

Meet the peers from the newly established Peers Explain TikTok channel.

Anth McCarthy

Anth McCarthy has lived openly with HIV since 2016. He works with a broad cross-section of people living with HIV in his role as Peer Navigator at Living Positive Victoria. In particular, he provides targeted peer support to other heterosexual men living with HIV. He collaborates with them individually and in groups, to promote well-being, build resilience, build community and a sense of connection to the Body Positive. From 2020, he was a Community Advocate for the NAPWHA HIV Health Literacy project, where he continues to advocate for and on behalf of positive heterosexual men with a collective HetMAN Australia (the Heterosexual Men’s Advocacy Network).

Heather Ellis

Heather Ellis is a freelance journalist and author of two bestselling travel memoirs. She has lived with HIV since 1995 and is a former Chair of Positive Women Victoria, Australia’s only fully funded support and advocacy group for women living with HIV. With the organisation in 2021, Heather produced Our Stories: Ending HIV Stigma, a podcast about women, by women living with HIV in Australia to challenge the myths and stereotypes that feed HIV stigma. As part of the NAPWHA HIV Health Literacy Framework project, Heather was a co-author of the community resource Breastfeeding for women living with HIV In Australia published in September 2021.

Beau Newham

Beau Newham upon joining the team as Peer Navigator at Living Positive Victoria, brings the experiences of working alongside HIV-positive communities in Australia, Indonesia, Papua New Guinea and Malaysia. Over the last 7 years, Beau has seen first-hand the devastating impact HIV continues to have on neighbouring countries, and communities at the margins. At the same time, seen the profound change made possible by people living with HIV coming together to support each other and advocate for PLHIV-centred HIV responses.

How did the ‘Peers Explain’ initiative come about?

In November 2021, three of the authors (Ann Maccarrone, Fraser Drummond and Brent Allan) of a recent paper on Quantifying unmet treatment needs among people living with HIV in Australia and other countries published in Population Medicine Oct 2021/Vol 3 partnered with three community advocates (Beau Newham, Heather Elis and Anthony McCarthy) and people living with HIV in Australia who were interested in taking this paper and creating a community and PLHIV-specific document which summarises the research for greater accessibility.

What is knowledge translation?

Knowledge Translation (KT) is a commonly used practice across many disciplines to take what would otherwise be academic and conference papers to reconfigure and translate these into community accessible resources.

The aim of KT is to ensure that knowledge development is made more accessible to a greater body of people and in particular those involved as the subjects in the research and the agencies that are commissioned to support them.

What were the knowledge translation activities developed?

Over December 2021 and January 2022, the authors guided the community advocates through their comprehension of the paper and assisted with the creation of a plain English, easily accessible version of the paper.

What happened next was the community advocates developing content including a short video (TikTok style; in a plain English summary) and two memes to be used to promote access to the paper and the important messages therein.  The work (outputs) of these three community advocates can also be found on this summary webpage.

Above:  Community Advocates and supporting community organisations have promoted the knowledge translation content across different social media platforms including Twitter, Instagram, Facebook and TikTok.

Key reflections on the KT project

  • The process developed new partnership and relationships across professional disciplines
  • The process highlighted how critically important community advocates are to knowledge translation being accessible and useful
  • Restrictions on in-person work elongated the time needed to do the work
  • Payment to community advocates is critical so the project is viewed and valued as the important work it is
  • All three community advocates spent approximately 1 full day on the project over the course of 3-4 months
  • The process and permission allowed creativity and lateral thinking to be brought to the foreground
  • Important once the outputs are done to consider promotion and communication activities as a full team

The learning and perspectives on the process have been used to develop a submitted abstract for the AIDS2022 conference in Montréal in July 2022 and as a proposed abstract for Australasian HIV&AIDS Conference 2022.

We hope that the outcomes from this project can more fully demonstrate that the publication of academic papers is not the end point of research and analysis but that all authors and the community should better invest their time and efforts in comprehensive KT projects such as this one.

More about Positive Perspectives 2

Above:  The ViiV Positive Perspectives 2 (PP2) study is a multi-country survey which was created to generate insights into the unmet needs of people living with HIV (PLHIV). It is one of the largest global, HIV patient-reported outcomes studies involving 2,389 PLHIV across 25 countries.

NAPWHA has been a partner of this study to disseminate research findings to the Australian PLHIV community.

Positive Perspective 2 survey community webinar

TIM Townhall community webinar

Quality of Life for All symposium

Finding Joy virtual community event

  • On May 13, 2022 — NAPWHA is hosting an online community event ‘Finding Joy’ will feature the launch of the Australian Community Accord on Quality of Life for People with HIV, which incorporates the insights and experiences that people living with HIV shared with us at the online community events NAPWHA held in 2021.

What the research found

Australians living with HIV have among the highest levels of satisfaction with their HIV care. New research considered Australian data from the international Positive Perspectives 2 study. It looked for differences between people with HIV in Australia and other countries. Despite the positive overall results, Australian participants were unhappy with their mental health. They also had concerns about long-term side effects of HIV treatment. These concerns are not always addressed by HIV care providers.

What is Positive Perspectives 2?

This web-based survey was conducted in 2019. It gathered data from 2,389 people on HIV treatment, including 120 from Australia. It looked for differences in treatment attitudes and behaviours. The aim was to identify unmet needs and improve ‘person-centred’ care.

What is person-centred care?

Person-centred care goes beyond achieving undetectable viral load. It aims at good quality of life. This happens when people with HIV can talk to their doctor freely about their mental and physical health. The doctor listens and offers solutions. Together, people with HIV are partners in their own care.

What is the ‘fourth 90’?

Good quality of life has been proposed as the ‘fourth 90.’ What does this mean?

Back in 2013, UNAIDS set three targets for ending the HIV epidemic.

  • 90% of people with HIV know their status.
  • 90% of diagnosed people are on treatment.
  • 90% of people on treatment have undetectable viral load.

Researchers and community leaders have pushed for a fourth 90. Quality of life is more than viral suppression. It underpins everything we do.

What the research found

  • Most participants had an undetectable viral load (97%).
  • Most participants were satisfied with their HIV care (83%).
  • Most participants were not stressed about taking their pills each day.
  • A third reported needing help with their mental health (35%).

What about side effects?

Certain issues were concerns for people with HIV in all 25 countries surveyed. These include side effects, the number of pills taken each day, and long term health. A third of participants in Australia (31%) reported side effects from HIV medication. The highest was Mexico at 75%. About two thirds of all participants worried about long-term effects of HIV treatments, including 63% in Australia. The highest level of concern was in Argentina (88%).

Australia leads the world in some respects. People with HIV in Australia feel comfortable talking to their doctor about side effects (81%) and HIV treatments (93%). Three quarters said their doctor asks for their views before prescribing HIV treatments (76%).

Agreeing on a treatment plan

To improve person-centred care, the research suggests a treatment plan should be created. It should be evaluated regularly, even when you are happy with your medication. This can happen through a regular conversation with your HIV care provider. It should address your concerns about long term effects of treatment, such as liver, kidney and bone health.

The research found communication between doctors and patients can be improved. In particular, participants felt they were taking up too much of their doctors’ time. There may not be enough time in appointments to discuss patient concerns.

What are the next steps?

The research helps us understand the needs and preferences of people with HIV in Australia and around the world. This can help us improve person-centred care and quality of life for people with HIV.

Many studies report people with HIV have lower quality of life. This includes having more age-related illness earlier in life. This can mean taking other medications in addition to HIV treatment. This can lead to ‘polypharmacy,’ or taking more than five pills daily.

To achieve good quality of life for all people with HIV, treatment and care must be holistic. This means care providers consider both physical and mental health concerns. They offer solutions, which may include new treatment options. They engage people with HIV in shared decision-making about their care.

Limitations to keep in mind

Only fourteen Australian women participated in the survey. We need to look at other research and resources to understand the experiences of positive women.

Similarly, the survey did not ask about the race/ethnicity of participants. Indigenous and culturally diverse people may have worse experiences of HIV treatment and care.

Survey participants were drawn from people already engaged with PLHIV organisations. They are likely to be doing better than people who are not connected with care and support.

These limitations are not reasons to dismiss the research findings. If anything, they underscore the need for improvements in patient-centred care.