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

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’.

Taking the temperature of the Association — Kirsty Machon

Kirsty Machon, Executive Director of Positive Women Victoria shares stories about life and times, resilience and community during COVID-19 with Dr John Rule (NAPWHA Senior Research Manager) during the Melbourne lockdown. Positive Women Victoria (PWV) for over 30 years, has provided peer support, information and advocacy for women in Victoria living with HIV.

The National Association of People with HIV Australia (NAPWHA) is Australia’s peak non-government organisation representing community-based groups of people living with HIV across Australia. In this video series, we share the experiences and responses of communities managing and adapting to the unfolding 2020 pandemic.

This interview was recorded on 18 August 2020

Related links

In September 2020, Positive Women Victoria announced the launch of their brand new podcast, Our Stories: Ending HIV Stigma, a podcast about women, by women living with HIV in Australia, that challenges the myths and stereotypes that feed HIV stigma.

‘Their stories are real, unfiltered and always inspiring,’ says journalist and author, Heather Ellis, who is openly living with HIV and hosts each episode.

The series is a one-on-one conversation with women living with HIV, where amazing women share stories about their life goals, navigating sex and relationships, pregnancy and motherhood. They discuss what it means to be confident in this new era of U=U (Undetectable = Untransmittable), and what this means for them.

Hear other video episodes

In this series, Dr John Rule reports back from the NAPWHA members to hear about community stories and community-led responses adapting to life during COVID-19.

Taking the Temperature — Episode 01 — Sam and Wilo
Taking the Temperature — Episode 02 — Richard Keane
Taking the Temperature — Episode 04 — Anth McCarthy
Taking the Temperature — Episode 05 — Hayden Patterson
Taking the Temperature — Episode 06 — Charlie Tredway

Events marking the National Day of Women Living with HIV 2020

NAPWHA and the National Network of Women Living with HIV known as Femfatales had the honour of hosting a dinner and one-day forum in Sydney to mark the 5th National day of Women living with HIV (#NDWLHIV). It was a valuable opportunity for women to join together and hear from other leaders in the sector and plot a course forward to better engage with and deliver for all women living with HIV in Australia.

Access some of the presentations from the event:

For this year’s National Day of Women Living with HIV 2020, read more about the Femfatales who made a call to action for #EachforEqual increased awareness and equitable access to HIV testing.

About Femfatales

Femfatales (the National Network of Women living with HIV) is an advisory group, constituted to provide NAPWHA with an ongoing consultative forum for the discussion of issues for women living with HIV in Australia.

Let Women Talk — Sarah Feagan & Allie Carter

In this video episode of Let Women Talk, HIV community advocate Sarah Feagan speaks with Dr. Allison (Allie) Carter, a Lecturer in Sexual Health at the Kirby Institute, UNSW Sydney, from the 2019 Australasian HIV&AIDS Conference held in Perth on 17-19 September about. Allie has been engaged in research at the intersection of sexuality, health, and human rights for nearly a decade, with a focus on the lives of women. She is the founding co-editor of Life and Love with HIV, a blog and online community for women and couples around the world to share stories of sexuality, romance, and love.

About Life and Love with HIV

Life and Love with HIV is a blog and online community dedicated to de-stigmatising sexuality and relationships among women, partners, and couples living with HIV by shifting the focus from risk to pleasure. In creating our own stories, in our own voices, with our own words, our goal is to reclaim our sexual rights around the world.

But Beyoncé wasn’t built in a day! Turning this idea into action happened over the course of three years. We hosted several sex-positive workshops with women. We also scoured the web, collecting what little resources we could find. And we started community building, eventually recruiting a diverse team of writers from around the world with the help of social media. What began as a small grassroots, volunteer-run effort in British Columbia, Canada, slowly transformed into the global platform it is today.

Find out about Let Women Talk

Let Women Talk is a NAPWHA community-led health literacy initiative where HIV community advocates incorporate their rich perspectives and diverse lived HIV experiences back into strengthening community health responses — where women design and develop the health content and interventions that they want to see and hear. The initiative is one of many activities forming part of the HIV Health Literacy Framework Project, a NAPWHA project supported through the funding of ViiV Healthcare Australia.

Hear other video episodes

In this series, Sarah Feagan reports back from the 2019 Australasian HIV&AIDS Conference aiming to translate research back into community practice.

Who’s in this interview?

Allie Carter is a feminist author, speaker, activist, and researcher — engaged in research to advance women’s sexual health and rights for nearly a decade, with a particular focus on hidden and under-served communities. She received her MPH and PhD at Simon Fraser University in Canada and worked previously at the British Columbia Centre for Excellence in HIV/AIDS. She is presently a Lecturer in Sexual Health at the Kirby Institute at the University of New South Wales. Allie has published over 30 scientific articles and her work has appeared in CBC, CTV, The Star, Ravishly, and much more. She has a deep passion for communicating science through narrative and is currently writing her first book.

Sarah Feagan is a queer women who has been living with HIV since 2008. She is the previous chair of Positive Women Victoria and has recently joined the team at Living Positive Victoria as a Peer Navigator. She also the Vice President of NAPWHA. Sarah is a co-facilitator of Phoenix for Women and the Positive Leadership Development Institute (PLDi) . Sarah has unique approach to her advocacy and is inspired by the lived experience of the body positive to inform her practice. Sarah’s advocacy spans the from the grass roots all the way up to high level governance. She has a global outlook with a local focus to bringing the community along with her.

Let Women Talk — Sarah Feagan & Moira Wilson

In this video episode of Let Women Talk, HIV community advocate Sarah Feagan speaks with Dr Moira Wilson — an infectious diseases consultant working at Fiona Stanley Hospital in Perth, and part of the West Australian HIV positive women’s pregnancy management team. Dr Wilson presented at the 2019 Australasian HIV&AIDS Conference held in Perth on 17-19 September about the updates in management for women who are pregnant living with HIV.

About the presentation

Dr Wilson presented the latest evidence around antiretroviral therapy (ART) use in pregnancy. At the at 10th IAS Conference on HIV Science held in Mexico City in July 2019, results of an expansion of the Tsepamo study in Botswana were presented. While the risk with Dolutegravir (DTG) and neural tube defects appears to be much lower than first thought, the signal still remains. Guidelines are not excluding Dolutegravir as an otherwise excellent choice for use in pregnancy, however, it should be avoided in the first 8 weeks, and hence, avoided in women of childbearing potential who are not using a reliable method of contraception.

Also in this video series is Sarah Feagan & Carole Khaw who speak about a case study with a pregnant woman on DTG.

Related links

Find out about Let Women Talk

Let Women Talk is a NAPWHA community-led health literacy initiative where HIV community advocates incorporate their rich perspectives and diverse lived HIV experiences back into strengthening community health responses — where women design and develop the health content and interventions that they want to see and hear. The initiative is one of many activities forming part of the HIV Health Literacy Framework Project, a NAPWHA project supported through the funding of ViiV Healthcare Australia.

Hear other video episodes

In this series, Sarah Feagan reports back from the 2019 Australasian HIV&AIDS Conference aiming to translate research back into community practice.

Who’s in this interview?

Dr Moira Wilson is an infectious diseases consultant working at Fiona Stanley Hospital in Perth. She has been managing patients with HIV/AIDS since 1986, both in Australia and internationally, and has a strong interest in the holistic management of women living with HIV. She is part of the West Australian HIV positive women’s pregnancy management team.

Sarah Feagan is a queer women who has been living with HIV since 2008. She is the previous chair of Positive Women Victoria and has recently joined the team at Living Positive Victoria as a Peer Navigator. She also the Vice President of NAPWHA. Sarah is a co-facilitator of Phoenix for Women and the Positive Leadership Development Institute (PLDi). Sarah has unique approach to her advocacy and is inspired by the lived experience of the body positive to inform her practice. Sarah’s advocacy spans the from the grass roots all the way up to high level governance. She has a global outlook with a local focus to bringing the community along with her.