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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.

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?

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’.