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‘Living well’ marks the theme of 2022 National Day of Women Living with HIV

Each year, on March 9th, the National Network of Women Living with HIV celebrate the lives of women with HIV in Australia. We use this day to educate the wider community that HIV does affect women in Australia; and to speak to our network about issues of importance.

In the lead up to our 7th National Day of Women Living with HIV on March 9th, 2022 we’re releasing a social media campaign. We asked positive women around the country to share their voices to help us celebrate the theme of this year’s National Day event #WomenLivingWell. The campaign aims to raise the profile of our unique perspectives and stories across the country.

This initiative by our National Network of Women Living with HIV heard from many positive women whose voices are being featured in 20 social media images.

“We asked what does living well mean to you? This is a theme which focuses on the importance of joy, health, wellbeing and connection in our lives,” says Kath Leane from the National Network.

“What does living well look like and feel like in your everyday life? What are some of the challenges to living well for women living with HIV? What changes would you like to see? What are your hopes for yourself and for other women?”

“When women living with HIV, in all their beautiful diversity, share their voices and tell their stories, we support each other; we end our own internalised stigma; and we raise awareness within the wider community,” says Heather Ellis also from the National Network. Heather is also the host of the ‘Our Stories: Ending HIV stigma‘ podcast series, published by Positive Women Victoria.

“The stories of all women living with HIV are so very powerful in fighting ignorance and ultimately ending HIV-related stigma once and for all.”

The short but powerful quotes in this campaign reflect the diversity, resilience, challenges and strengths of women’s lives. On this National Day, we continue making time to celebrate the lives, stories and resilience of positive women. by hosting events and raising the awareness and profile of women living with HIV in Australia.

See below a listing of events around Australia hosted by various  organisations, agencies and groups

See also previous National Day events:

‘Taking control of our health’ marks the theme of 2021 National Day of Women Living with HIV (March 2021)

Femfatales make a call to action for #EachforEqual increased awareness and equitable access to HIV testing (March 2020)

National Day of Women Living with HIV — Awareness. Celebrate. Advocate. Inspire. Empower. (March 2019)

Also visit the major makeover of the ‘Living Well: Women with HIV’ website

This year’s National Day of Women Living with HIV theme and socal media campaign initiative ties in with the Living Well: Women with HIV website.  This website having undergone a major makeover, offers wide ranging information about living with HIV, disclosing HIV status, having sex, taking treatment, caring for your body, having children, keeping well, and getting support. It was first published by AFAO and NAPWHA in 2016.

This new-look website Living Well: Women with HIV, reflects some of the ways the world of positive women has changed during the last few years, including the release of the The Breastfeeding for women living with HIV in Australia community resource which was launched in September 2021. The new design has been to enhance online access.

Women’s Morning Tea Event in Adelaide — Wed 9 March

Join SAMESH and The David Roche Foundation for a guided tour of Silhouettes: Fashion in the Shadow of HIV/AIDS, followed by a morning tea on the manicured grounds of The David Roche Museum.

Kath Leane from Positive Life SA (PLSA) and the National Network of Women living with HIV (NAPWHA) will also speak about the importance of the day and give us some history of women living with HIV in Australia.

When:  Wed, March 9, 2022 — 10:00 AM – 11:30 AM ACDT
Where:  The David Roche Foundation, 241 Melbourne Street, North Adelaide, SA 5006

Women’s Morning Tea Event in Brisbane — Wed 9 March

To commemorate this years 7th National Day of Women Living With HIV, QPP is hosting a Morning Tea at New Farm Park Rotunda, 10:30am, Wednesday, 9 March 2022.

Join us to celebrate Living Well this National Day of Women Living with HIV, enjoy a relaxed morning tea, share your experiences and even discuss the national social media campaign published and launched by NAPWHA on the day.

To RSVP for the event, please email info@qpp.org.au or phone 07 3013 5555. Please let us know if you have any dietary requirements too.

Women’s Breakfast Event in Perth — Wed 9 March

WAAC are hosting a Breakfast meeting for the SHEWomen Group to commemorate the National Women HIV Day at Biara Café (previous known as Stickybeaks Playground Café) located in Kings Park and Botanic Garden. on the Wednesday 9 March 2022 at 10–12 noon.

There is also the first Open Community Consultation for people living with HIV is on Tuesday 8 March. Finger food and soft drinks from 5:30pm–6:00pm.  The Consultation/Forum will be from 6:00–7:30pm.

Register your interest by contacting Melphina Moyo
WAAC HIV Peer Educator (Monday, Tuesday and Thursday)
Phone: 08 9482 0000  |  Mobile: 0436 431 435

Women’s Morning Tea Event in Sydney — Wed 9 March

Positive Life NSW invites women living with HIV and a guest to celebrate the lives of all women living with HIV over an Afternoon High Tea, at the Seventh National Day of Women living with HIV.

Join us as we relax with friends and supporters in a mixed social environment over a classic range of sweet and savoury treats, coffee and a range of tea selections, hear from a range of presenters speaking to our theme Living Well: Beyond Stigma and enjoy some light entertainment.

RSVP essential for catering purposes. Please advise dietary restrictions (gluten-free, vegetarian or vegan) on RSVP. Places limited to 50 guests.

Time: 2pm – 4pm
Place:  Sheraton Grand Sydney, Hyde Park, 161 Elizabeth Street, Sydney NSW
Register: (02) 9206-2177 or 1800 245 677 (freecall) by 5pm Wednesday 2 March or contact@positivelife.org.au

Listen to ‘Our Stories: Ending HIV Stigma‘ — a podcast series by Positive Women Victoria

Listen to 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. We share our stories of achieving our personal and career goals, navigating sex and relationships, and our journey through pregnancy and motherhood in this new era of Undetectable equals Untransmittable (U=U).

Our stories are real, unfiltered and always inspiring. Hosted by Heather Ellis, a journalist and author, who has lived with HIV since 1995. Original podcast music by Mark Daniel. Podcast artwork by Carolina Relander.

Join the NAPWHA social media campaign:  Living Well — What it means to you

Each year, on March 9, the National Network of Women Living with HIV celebrate the lives of women with HIV in Australia. We use this day to educate the wider community that HIV does affect women in Australia; and to speak to our network about issues of importance.

Our theme this year is ‘Living Well’, and focuses on the importance of joy, health, wellbeing, and connection in our lives.  If you are a woman living with HIV, we want to hear from you.

We want to hear what living well means to you. What does it look like? Feel like? What are your hopes for yourself and for other women? What work still needs to be done?

The goal of this campaign from the National Network of Women Living With HIV & NAPWHA is to celebrate our strengths and hopes, as well as highlighting the work that still needs to be done to make sure all women living with HIV have the support to truly live well.

We hope to share the words from women like you in a social media campaign to raise the profile of our unique perspectives and stories across the country. Of course, you can be anonymous if you like.

Get involved by responding to the short questions below with as much or as little detail as you like. Make sure you send us your words by Friday, 4th March.  We hope your voice will be part of it!

Our national social media campaign will be published and launched on NAPWHA’s social media channels and on the Positive Living website on the National Day on the 9th March.

Updates on COVID-19 and HIV

In this webinar, held on 1 March 2022, ASHM brings together speakers from health, research, and the HIV community to discuss COVID-19 and HIV.

Speakers presented COVID-19 information specific to people living with HIV, including updates on COVID-19 vaccines and treatments, as well as the latest clinical guidance on HIV and COVID-19 co-infection. So, what does this all mean for healthcare workers providing care to people living with HIV and current guidance on managing COVID?

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.

#PeersExplain Poster

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.

 

 

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.

National Members Forum 2022 held in Sydney

In June 2022, the NAPWHA national forum of its membership met together in a two-day event in a hybrid face-to-face and live video streaming event. It was the first face-to-face event to happen since the COVID-19 lockdowns commenced in 2020. The event brought together our NAPWHA members, NAPWHA networks, NAPWHA Board and Staff and featured speakers. The first day on Friday showcased the Health Literacy Framework project and the Finding Joy congress, supported by ViiV Healthcare Australia. Below are some of the forum’s agenda items and some of the presentations expanded.

Fit for Purpose project: Scott Harlum

Scott Harlum (NAPWHA President) presented on a ‘Fit for Purpose’ project.

Insurance and HIV: InterInsurance Group

Members of the InterInsurance Group (a network of LGBTIQA+ and professional allies from Australia’s largest insurers) presented on insurance and HIV.

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