HEALTH PROMOTION PROFILE Living Well: Women with HIV

HIV Australia | Vol. 14 No. 1 | March 2016

By Sally Cameron and Finn O’Keefe

The Australian Federation of AIDS Organisations (AFAO) recently celebrated the inaugural National Day for Women Living with HIV (9 March), launching a new resource for HIV-positive women.

The resource has been adapted from a ground-breaking booklet Treat Yourself Right, first produced by AFAO in 2000 and revised and reprinted in 2001 and 2007. The latest iteration of the resource has been rebranded and relaunched as Living Well: Women with HIV.

Women make up about 10% of people living with HIV in Australia, and gender differences can have a significant impact on the progression of HIV infection, how it is best treated and the range of side effects experienced. Consequently, there is strong demand from HIV-positive women for specific resources for women to supplement the many resources which assume a male audience as their default.

Treat Yourself Right was unique as one of only a few resources written specifically for HIV-positive women in the Australian context. Although it has been out of print for many years, the resource remains highly regarded by Australian and international people living with HIV (PLHIV) organisations and networks.

It has been commended by the International Council of Women, and has been adapted for use by New Zealand’s Positive Women, who produced a localised version for HIV-positive women in New Zealand.

Due to recent developments in antiretroviral (ARV) treatment, new evidence about the preventative benefits of ARV therapy and the rise of electronic media, AFAO’s Health Promotion team undertook a major revision and update of the resource.

This process included a survey of key networks of women living with HIV, international scoping of comparable resources, and a technical review of scientific and medical information. Positive women’s networks and service providers steered the structure of the revised resource and reviewed draft text.

Living Well: Women with HIV 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. The new-look resource is available as a booklet and, for the first time, as a website.

Having undergone a major makeover, Living Well: Women with HIVreflects some of the ways the world of positive women has changed during the last few years. The new name is designed to enhance online access.

‘We wanted a title that was intuitive and pragmatic – something that would show up quickly on any search,’ former AFAO Executive Director Rob Lake explained.

‘The title also recognises the reality that many women with HIV are living great lives, while treatments have provided a sense of long-term optimism,’ Rob Lake said.

Unlike general resources, Living Well: Women with HIV addresses many of the specific issues faced by women with HIV including increased risk of thrush, pelvic inflammatory disease (PID), human papillomavirus (HPV), cervical cancer and osteoporosis.

HIV may trigger menstrual changes and many ARV treatments reduce the effectiveness of hormonal contraceptives, increasing the likelihood of pregnancy. The resource also addresses issues associated with pregnancy, delivery and breastfeeding.

Development of Living Well benefited enormously from the input of many positive women, but in particular from Femfatales (the National Network of Women living with HIV), Positive Women Victoria and women from Living Positive Victoria. A key input was advocacy to ensure that the resource remained available as a printed booklet as well as a website.

The Living Well: Women with HIV website (www.womenlivingwell.org.au) was launched on World AIDS Day 2015.

The booklet was launched on 9 March 2016, as part of the inaugural National Day of Women Living with HIV in Australia, organised by Femfatales – a day of coordinated events connecting and supporting HIV-positive women across Australia.

Positive Life NSW President Jane Costello spoke at the launch of the booklet, highlighting the importance of having a resource tailored specifically to the needs of HIV-positive women.

‘Women are largely invisible in our HIV response, and women with HIV are a minority who live with inequality, in silence and secrecy,’ Jane Costello said.

‘That inequality, silence and secrecy feeds a climate of stigma and discrimination, as well as an assumption that HIV is simply not an issue for women.

‘If you are a woman living with HIV or you want to know more about some of the specific issues and concerns of women with HIV, I highly recommend this resource to you, and I look forward to seeing the resource distributed widely.’

Copies of the booklet are available to positive women from AFAO, PLHIV organisations and AIDS Councils in each state and territory. You can also download the booklet as a PDF.

Sally Cameron is Health Promotion Officer – Policy at AFAO. Finn O’Keefe is Communications Officer at AFAO and an editor of HIV Australia.