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

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.

Celebrating the lives, bravery and advocacy of those who paved the way on HIV Long Term Survivors Day

NAPWHA’s special representative, David Menadue, quote

June 5th is HIV Long Term Survivors Day and we commemorate and celebrate the lives, bravery and advocacy of those who paved the way for every facet of the HIV response.

NAPWHA’s special representative, David Menadue, imparts a message in line with the day’s theme empowered to thrive:  “To all long term survivors out there today we are acknowledging the major ups and downs you have been through on your journey to stay alive, and with as much quality of life as possible. You are respected within the HIV community and beyond for the challenges you have faced, including the grief and loss that has been so much a part of our lives in the past. Stay strong and support each other. We are each other’s heroes.”

Related links

The forgotten generation? Modern advancements such as U=U have redefined what it means to live with HIV. But, as Ross Duffin reports, for the long-term survivors the lived reality is not so rosy. Published in Positive Living Magazine in June 2019

Breastfeeding for Women Living with HIV online community forum

Breastfeeding for Women Living with HIV online community forum

In this NAPWHA and Positive Women Victoria-hosted event, women living with HIV are invited to come and learn about the latest advice and guidance on breastfeeding.

This national online community forum will be moderated by Heather Ellis, co-author of Breastfeeding for women living with HIV in Australia resource (soon to be published in May 2021) which was developed in collaboration with NAPWHA and Positive Women Victoria. This community resource can also to be used in conjunction with clinical Guidance for the care of women living with HIV in Australia who are considering infant feeding options produced by ASHM (Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine) also soon to be published in 2021.

Speakers available to answer your questions about breastfeeding as a woman living with HIV include:

  • Melania Mugamu – HIV peer support worker in Australia. Melania is living with HIV and a qualified social worker with more than 10 years experience working within the HIV community in Zimbabwe where many of her clients were women living with HIV who breastfed their infants.
  • Dr Fiona Bisshop – HIV specialist doctor from Brisbane with a strong focus on gender and HIV medicine. Fiona is a member of the ASHM ARV guidelines sub-committee and is also very knowledgeable about pregnancy and breastfeeding for women living with HIV.
  • Kate Bath – ASHM HIV/STI program manager and sub-committee secretariat for the ASHM Guidance for the care of women living with HIV in Australia who are considering infant feeding options.

Registration to attend this online event is essential.

This event is an initiative that is part of the NAPWHA HIV Health Literacy Framework project. It was made possible through the kind support of ViiV healthcare Australia.

  • 0:00 Heather Ellis introduction and promo for NAPWHA/Positive Women community resource
  • 02:39 Introducing community panellist, Melania Mugamu
  • 04:41 Introducing Kate Bath; ASHM clinical guidance for healthcare providers
  • 07:42 Introducing Dr Fiona Bisshop; and what is person-centred healthcare
  • 09:36 Question: “In some cultures there is an expectation to breastfeed… but if I do not breastfeed I am effect effectively disclosing my HIV.” What could women say if someone asks, why you are bottle feeding versus breast feeding?
  • 13:44 “If I decide to breastfeed, I’m worried I will become anxious by my decision, even though the risk is very small”. What is the information from the PROMISE Study?
  • 16:14 Who is part of a HIV healthcare team? What are their roles?
  • 18:43 Lactation consultants and midwives
  • 23:26 Mastitis
  • 27:07 Stopping breastfeeding and switching to formula feeding
  • 29:40 Blood tests after birth to check whether or not the baby has contracted HIV
  • 32:47 Is breastfeeding beneficial to the immune system of mothers living with HIV?
  • 33:24 Could my baby be taken from me by child protective services if I breastfeed?
  • 36:33 Advice for a woman if her GP speaks of child protective services may get involved
  • 38:47 Can a parent decide not to treat the infant with HIV medication? (HIV PEP – post-exposure prophylaxis)
  • 40:41 Is there any sort of long-term effects on the infant and child as they grow up after the exposure to the ARV medications found in breast milk?

Join Community Conversations

In May, June and July 2021, NAPWHA are inviting community members to our ‘Community Conversations’, which is part of larger project called the Health Literacy Framework Project.

This project aims to better understand the experiences and needs of all people living with HIV. This includes creating conversations with Asian men and latinx community members living with HIV who were born overseas.

The aim is to understand how NAPWHA, as a community-based organisation, can better support and represent this community.

Through this ‘Community Conversation’, NAPWHA wants to hear your voice. We want to discuss with you how we can take action to improve our understanding of your HIV-related health needs. We also want to know how we could better support and represent you.

‘Community Conversations’ are held online via video call and moderated and facilitated by Community Advocates, who are HIV peers, Jimmy Yu-Hsiang Chen and Oscar Cortes.

It is important to note that ‘Community Conversations’ is not a support group or peer support.

Beyond the meaningful involvement of people with HIV in HIV-related research

Beyond the meaningful involvement of people with HIV in HIV-related research

In this video recorded as part of Kirby Institute Seminar Series (UNSW Sydney) on 30 March 2021, Aaron Cogle, NAPWHA Executive Director, talks about the important role people with HIV play in HIV-related research and where the gaps are in our current understanding.

People with HIV have a long history of involvement in HIV-related research. However, their specific role in HIV prevention has yet to be fully understood. The presentation analysed what constitutes the ‘meaningful involvement’ of people with HIV, how we move beyond mere involvement to something more substantial, and what we can gain by changing the narrative around HIV prevention research.

It also showcases how NAPWHA utilises research about positive people and where the gaps are in our current understanding of the Australian HIV-positive population.

Download the Presentation Slides [PDF] 

0:00​​  Webinar welcome
1:17​​  Introducing Aaron Cogle
1:54 ​​ Aaron Cogle on beyond the meaningful involvement of people with HIV (MIPA) in HIV-related research
30:22​​  Q&A

Community Webinar Australia: Positive Perspectives 2 Survey

Community Webinar Australia: Positive Perspectives 2 Survey

On 26 March 2021, NAPWHA hosted a community interactive webinar discussing data from the ViiV Positive Perspectives 2 (PP2) study 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.

Video

  • 00:00 Daniel Reeders, NAPWHA Host — Welcome
  • 03:16Dr Ben Young, ViiV Healthcare Head of Global Medical Directors — What affects quality of life and favourable health outcomes?
  • 31:35 Brent Allan, ViiV Positive Perspectives Wave 1 and Wave 2, Country Advisor for Australia — What does the Positive Perspective 2 data mean for PLHIV in Australia? (Discussion)
  • 51:28 Q&A with the panel