Two sisters yarn about pregnancy and HIV treatments. Michelle was diagnosed in 1990 when medication wasn’t an option. Jaimee was diagnosed in 2015 and began treatment soon after.

Treatment wasn’t the norm when Michelle was diagnosed.

“Nor was it offered when I became pregnant in 1994. I was put on AZT and 3TC in 1997 when I developed Pneumocystis pneumonia (PCP), a serious lung infection that affects people with weakened immune systems. Unfortunately, I developed resistance, so went through many regimes to see what worked for me, especially being a single mum.

“I was told that I shouldn’t get my youngest daughter tested until she was around two. I did and she was negative. That meant that if anything happened to me, my eldest would not grow up alone.

“I am still here, today. I take one pill a day, Bictarvy, and it seems to be working.”

Jaimee was diagnosed in 2015 and began treatment soon after.

“I was put on dolutegravir (DTG) or bictegravir (BIC), at that point I found out I was pregnant and it was difficult as I was so scared that my daughter would have it. I had to have a C section and regularly check in with the hospital at the Maternal Foetal Unit. I was looked after by two nurses, and I also saw a Multidisciplinary Team’s doctor.  In my follow up I was told I could never breast feed.

“When I had my babies they had to both be taken  to have their first lot of medication then for the next six weeks I gave them their ARVs with the help of the royal district nurses. We had follow up appointments to make sure they were gaining weight. I also had to regularly take my children to have their blood taken to make sure that they didn’t have the HIV itself.

“Today the medication is 100% more reassuring than what it was back to the 80s.”

Relocating to Australia as a young mother from Africa, I feared being misunderstood, stigmatised, and having to navigate a healthcare system that didn’t reflect my culture or needs. Coming from a country where I experienced discrimination, I carried that weight quietly.

I had little faith or trust in society and felt alone in my HIV journey. That changed when I met other women from culturally and linguistically diverse backgrounds living with HIV. In them, I saw strength and possibility, and I was reminded I wasn’t alone. Our stories—different yet deeply connected—helped me reclaim my voice and my life.

I share my story to honour where I come from and stand united with women across Australia. Our stories build visibility, challenge stereotypes, and help ensure no woman is left behind. We rise together.

Women living with HIV are experts in our own lives. Our perspectives are not optional add-ons to policy or healthcare—they are vital contributions to Australia’s HIV narrative. When women’s voices are heard and valued, health outcomes improve, communities grow stronger, and services become more inclusive.

Yet many women face barriers that silence them. For women from culturally and linguistically diverse backgrounds, especially women of colour, these barriers layer—stigma, racism, gender inequality, and gaps in culturally appropriate care. When voices are excluded, entire experiences are left behind.

Despite advances in HIV treatment, women-specific research remains underdeveloped, particularly in menopause, reproductive health, and long-term wellbeing. Many begin menopause as early as 45, yet research, guidance, and pathways often ignore this reality.

As a woman of colour living with HIV navigating menopause, I’ve faced numerous healthcare barriers. While I can advocate for myself, specialists sometimes assume authority over my health decisions without consulting my GP—even when I request collaboration. These moments are exhausting, disempowering, and frustrating.

More troubling is the question: what happens to women still finding their voice? Newly diagnosed women, those socially isolated or navigating trauma, may feel shut down. Without advocacy, their needs risk being overlooked or dismissed.

HIV management in women—especially at the intersections of menopause, reproductive health, mental health, and ageing—must be led by professionals with genuine expertise in supporting women living with HIV. Care must be collaborative, respectful, and women centred. Women are partners in decision-making.

Systemic change requires gender-responsive, culturally appropriate care, funded research on women living with HIV, and training that ensures providers truly listen. When we share our stories, we create change—challenging stigma, informing policy, and inspiring others.

Today, we honour the courage, wisdom, and diversity of women living with HIV. We stand in solidarity, united in strength.

Women have always been part of Australia’s HIV story, yet too often our experiences sit outside the centre of the response. HerStory: Unique and United is a call to action. It recognises that every woman’s journey with HIV is different, but our voices are strongest when heard together.

For many women, HIV is diagnosed late. While 38% of Australians living with HIV are diagnosed late, the rate for women is 44%, higher for heterosexually identifying women (46%) and for women born overseas (56%). Testing, prevention and health messaging have not consistently reflected women’s lives, bodies or relationships. HIV has been framed through a narrow lens, leaving women less visible in campaigns, prevention strategies and research priorities. Although new HIV notifications among Australian-born men who have sex with men have fallen 54% over ten years, women’s declines are only 5%. Anecdotally, women are still not offered—or are discouraged from seeking—testing when asked. We need nuanced, targeted messaging around testing, prevention and sexual health that is culturally appropriate and gender-specific. These gaps affect whether women are tested, when they’re diagnosed, how we access support, and our visibility in the HIV narrative.

Access to care remains inequitable. Women from culturally and linguistically diverse backgrounds or regional areas face limited access to gender-appropriate, culturally responsive care. Hormonal changes, gynecological care, mental wellbeing and financial stress are too often peripheral, not integral to HIV care. Despite advances, women are underrepresented in research, shaping long-term health management.

Stigma shapes our lives. Disclosure carries layered risks within families and communities, influencing intimacy, parenting and security. Yet when women meet other women living with HIV, connection, confidence and leadership emerge. Shared stories create power.

Her Story: Unique and United affirms that every woman’s experience matters—and together, our voices are essential to a more inclusive, responsive HIV response where no woman is left behind.

When you find that one person with whom you can have open conversations, time is not wasted on points of difference. So many fears are shared, once not dared to be spoken because of the fear of being outed, shamed, or humiliated.

I’m Lisa and I’m positively positive (no, not a typo, I am very positive). I was born a cis woman in the early 1960s and diagnosed in the mid-1980s. Most of us were given a very short time to live, then. Not sharing our status was common, as brutal reactions were normal—even from those we trusted the most: the healthcare sector, family, and friends.

Because we didn’t complain, everything seemed to be fine. Forgotten because we were alone? We just didn’t get any information on who or what was available to help or assist us.

Joining our peers is the perfect connection that gives all positive women the resilience and confidence to build the unique connections needed to live with HIV. As always, I don’t want anybody left behind, or anybody treated as I was.

I am so lucky to have Riss in my peer circle. When we unite, we thrive!

I’m Riss and my friendship with Lisa is a true source of strength and validation in my life as a woman living with HIV. Sharing a similar era of diagnosis, we both understand the unique challenges faced by women—often putting others first and making our own needs invisible. Lisa’s openness and courage inspire me to embrace my own story with confidence, and our bond reminds me that we are never alone on this journey.

Through the support of our women’s group and friendships like ours, I have found hope, resilience, and the confidence to live well with HIV. These connections are not just comforting—they are essential for our unique support needs.

I encourage every positive woman to reach out, share her story, and build these powerful bonds. Together, we can thrive, support one another, and show that our experiences unite us in strength and solidarity.

Kath was diagnosed HIV positive in 1987. Lee-Ann was diagnosed HIV positive in 2023. Thirty-six years apart, the common thread for both women is the value and strength of peer support and peer navigation.

For both of us, connecting with another woman living with HIV was an overwhelming, deeply felt need, despite nearly four decades between diagnoses. In 1987, there were no women-specific HIV services. Today, state, territory, and national networks—like NAPWHA—offer connection, understanding, and support for positive women.

Hearing other women’s voices and stories—lived experiences and unique journeys—was incredibly empowering. This shared experience unites us as women living with HIV.

As women diagnosed with HIV, we feel fear, shame, guilt, shock, and denial. What we need most is access to welcoming, understanding, compassionate, non-judgmental services. We need safe spaces where HIV stigma is challenged, where positive women connect with like-minded peers through peer support and peer navigation. There is a strong need to meet others navigating similar, unexpected experiences.

Hearing about others’ lives helps us feel less alone and less afraid. Unity across women’s networks empowers us to stand against HIV-related stigma. Knowing there are others willing to listen—unhurried, genuine time—makes a powerful difference.

Peer support and navigation empower us to find our advocacy voices: to become activists, educators, and leaders in HIV awareness, while honouring our roles as mothers, sisters, daughters, aunts, grandparents, and friends.

Kath: “Connecting with other positive women helped me find my voice, educate others, confront HIV stigma’s harm, and discover a courage I never knew existed.”

Lee-Ann: “I’ve found freedom in being open about my diagnosis. I reached out and connected with Kath. Now I’m training to become a peer navigator to help women find strength, confidence, and hope after diagnosis.”

The fear of stigma often prevents women from engaging with organisations and services. Many worry that someone from their own community will discover their HIV status. For example, some African women avoid events or social gatherings if they know others from their community will be present. They may feel comfortable with one‑on‑one peer support, but not in a group setting.

One member avoided peer support for years. As a peer support worker I repeatedly encouraged her to attend a women’s retreat, but she always declined. Eventually, her doctor insisted she give it a try, so she attended—and ended up really enjoying meeting other positive women. Later, I asked her why she had always said no. She told me, “I don’t know. I was too scared to come.” It was simply fear of the unknown. After connecting with other positive women, she told me she wished she had come years earlier.

When women engage with positive communities, it gives them strength and empowers them to realise they are not alone.

For women living with HIV, Peer support can be life changing.  Connecting with other women who understand the fear, silence and strength required to live with HIV reduces shame and replaces it with solidarity.  Seeing other women living with HIV – some for decades – provides hope, confidence, and reassurance that a full and meaningful future is possible.  Peer Support helps women move from surviving to thriving and reminds them they are not alone.

Diane was diagnosed with HIV in 1986 at a time when limited support services where focused on gay men and men who have sex with men. As a woman attending early support groups, Diane was often mistaken for a leader or supporter rather than as someone living with HIV.  Her experiences and needs as a woman were frequently overlooked which led her to seek connection with other women.

Following contact with the WA AIDS Council (WAAC) and the Royal Perth Hospital an informal women’s peer support group was established often meeting casually in each other’s homes and focused on sharing experiences and stories rather than formal and structured programs.  Although these groups were unfunded Diane received funding to organise the first 3 retreats for women living with HIV including one for women and their children.

In more recent years Diane worked as a part-time Peer Women’s Support worker at WAAC providing one-on-one support and facilitating monthly women’s programs. The social connection offered through shared activities including lunches and craft experiences alongside education. The group was diverse including women from CALD backgrounds and women diagnosed at different stages of life. 

Diane and these groups were a trusted source of emotional support over and above what was provided via the one-on-one support.

Zippy, an African woman, has found comfort with a peer support group with other women living with HIV after initially being worried about being recognised by members of her community.  The group helped her challenge feelings of being ‘sickly’ and, particularly after meeting Di who has lived with HIV for 40 years, she has hope. The multicultural nature of the group has helped reduce her social isolation and provides a safe space to speak openly about her health and future.

When originally diagnosed in Africa15 years ago access to timely treatment and support was limited and, because of co-morbidities and concern that treatments would not mix, she was not offered HIV medication for 5 years. During this time Zippy was unaware of any support service for people living with HIV and because of fear of stigma and discrimination within her community disclosed her diagnosis to only her older sister. Later, encouraged by her sister, Zippy disclosed to her family which resulted in a positive and supportive response.

Zippy came to Australia in 2020 on holiday but was unable to return to Africia because of COVID.  Initially she relied on medication sent from Africa, but shipping delays led to occasional gaps in treatment. When Zippy connected with Royal Perth Hospital she received comprehensive HIV care despite not having a Medicare card.  The result is that Zippy is now on a more effective medication regime at no cost and referral to the WA Aids Council (WAAC) provided counselling and peer support with other women living with HIV.

A combination of the care provided by Roval Perth Hospital, involvement with the peer support network and engagement with Diane mean that Zippy now feels empowered, less isolated and deeply grateful for the support, treatment and acceptance she has received in Australia.

HerStory: Unique and United reflects my own dawning realisation of the power of my story and the strength that builds when women around Australia living with HIV come together locally and nationally. The challenge for all of us is to raise awareness of women living with HIV and the unique challenges we face.

Diagnosed in the late 90’s in a remote part of Australia, I lived, until recently, in silence and secrecy – unable to connect with others and with limited access to comprehensive information or support.

I live in Darwin, yes, a territory capital city but, relatively speaking, a small place. I have come to regret that I let fear of stigma and discrimination rule my life, denying me the benefits that come with connecting with other women and access to comprehensive and current information about treatments. At diagnosis I couldn’t be guaranteed a further 10 years of life so got on with what time I had.  Now in my early 70’s I’m still here and dealing with health issues probably related to my HIV status and early treatments.

We all have individual stories, but we all face the same challenges. Fear of stigma and discrimination because of the lack of knowledge in the broader community that women even get HIV, fear of the impacts of medications we took in the early days to keep us alive had on our health, because of the limited testing done on women.

Not much has changed but since retiring from the paid workforce, I have come to recognise the importance of connection with other women, sharing experiences and knowledge.  In the Northern Territory we are making baby steps within the context of a high level of fear of stigma in a small community.  Increased engagement with women living with HIV in Darwin is improving the sharing of information and support.  The rest of the Territory is the next challenge.

The National Network of Women Living with HIV chose HerStory: Unique and United as the theme for this our 11th national day.  The challenge for the network is to find ways to convince others of the benefits of coming together.  The network recognises that fear and isolation in all communities, particularly small communities in remote and regional areas, denies people and particularly women living with HIV, access to the knowledge and support necessary to contribute to a good quality of life.

We can’t do it alone.  We need find a way to improve recognition that women get HIV and have particular needs.  A priority is to raise awareness in the broader community to reduce stigma and to encourage testing and treatment to minimise the impacts of late diagnosis. Those of us engaged with the sector have access to information but, from my own experience over 20 years, I know that those not directly involved rely on under resourced and overworked medical clinics to be aware of current research and data.

NTAHC (Northern Territory AIDS and Hepatitis Council)

High tea to celebrate the National Day of Women Living with HIV. Please RSVP for your seat at the Women’s Group Table email busisiwe@ntahc.org.au. Return transport available.

Be our guest, complimentary food and drinks!

Date: Sunday 8 March

Time: 11:30am

Venue: 122 Esplanade, Darwin City NT

Positive Life SA/Throne Harbour Health

Date: Friday 6 March

Time: 10:30am-1:30PM

Venue: SHINE SA (57 Hyde St Adelaide)

Register online

Download the event flyer

QPP (Queensland Positive People)

Date: Saturday 21 March

Venue: 21 Manilla St, East Brisbane QLD 4169 (QPP)

Herstory: Unique and United – celebrating the unique journeys of women living with HIV while highlighting resilience and unity.

PWV

Date: Friday 6 March

Time: 1:30–3:30pm

Venue: Positive Living Centre, 51 Commercial Road, South Yarra

Join us for a joyful afternoon celebrating women living with HIV in all our strength, diversity and connection. This year’s theme, Her Story: Unique and United, honours our lived experiences and shared community.

Enjoy a special afternoon tea, uplifting activities and a panel of women sharing their stories in a welcoming, inclusive space for all women living with HIV — including trans, AFAB and non-binary folk.

Come connect, relax, be celebrated and feel seen. PWV staff will also be there for support and a friendly catch-up.

WAAC

Date: Monday 9 March

Time: 10:00am-12:00PM

Venue: Location given by RSVP Limited spots Please RSVP by email to HELLO@WAAC.COM.AU or call 94820000

You are invited for the National Day of Women Living with HIV for a free High Tea for Positive women.