A Safe & Supportive Space for Women Living with HIV and Women who work in the HIV sector
Women lead busy lives and in between careers, kids and everything else that consumes their days, it is often that women don’t take time out for themselves. On Saturday 18th June 2016 a very successful event for women living with HIV (WLHIV) and women who work as health professionals in the sector was hosted by the WA AIDS Council. In attendance were 15 WLHIV, 11 health professionals and 3 WA AIDS Council staff members. The forum provided WLHIV a safe space to come together as peers, engage with clinicians outside of the hospital setting and discuss all things old, new and in the pipeline.
Presentations were facilitated by Dr Susan Herrmann from the Murdoch University’s Institute for Immunology & Infectious Diseases, Dr Moira Wilson from Fiona Stanley Hospital, Clinical Nurse Specialist Allison Cain from Royal Perth Hospital, Diane Lloyd from the National Association of People Living with HIV Australia’s Femme Fatales network and Liz Walker, HIV Positive Peer Education Officer at the WA AIDS Council.
Susan discussed ‘the elephant in the room’ and how the persisting issue of HIV-related stigma is essentially the ‘third’ phase of the epidemic. The first was identified as the establishment of the ‘epidemic’, the second ‘understanding HIV’ and the medical and treatment breakthroughs that have resulted in HIV now being referred to as a chronic manageable illness (CMI). So if HIV is a CMI, why isn’t it being spoken about openly by women and others living with HIV, than say Diabetes, Rheumatoid arthritis or Parkinson's disease? Whilst medically HIV is a CMI, a human evolutionary perspective about HIV as an infectious disease still lingers. HIV stigma persists as some kind of disgrace, based on the natural avoidance of a communicable disease.
Moira presented information and themes based on her recent participation in a HIV & Women Conference held in Boston, USA. The key themes at the conference were;
• Women: From adolescence through menopause
• Preventing women getting HIV- PrEP & Women
• Keeping women engaged in long-term care
• Achieving women-centered care
Moira shared her passion about working with WLHIV, supporting women to take control and supporting each other. Moira also strongly encouraged the notion of on-going forums to bring women together.
Allison shared her journey of working for many years in the sector, with a significant focus as the RPH coordinator of the rural & remote program and working with women in the pregnancy program. The crucial rural and remote service was established in 1998 with 21 PLHIV registered with the service, compared to 214 active patients in 2016. The multidisciplinary approach is essential for the service to function and includes Medical, Nursing, Allied Health and Community Agencies.
Some of the challenges for rural & remote patients are;
• Fear of unwanted disclosure
• Access to services
• Continuity of care
• High Mobility
• Maintaining confidentiality & privacy
• Medical/Nurse staff turnover
The WA Multidisciplinary Pregnancy Team is an inter-agency team, established to manage all pregnancies for women living with HIV. The program has assisted an increasing number of babies born to WLHIV in WA (Figure 1).
Figure 1: Cumulative total of number of babies born to WLHIV in WA from pre 1994 to 2013
Since its establishment, the program has managed an increasing number of pregnancies with geographic location, ethnicity or culture being of no barrier. This number is expected to reach 200 by end of 216. Key program outcomes include:
• Low rate of perinatal HIV transmission
• Containment & prevention of HIV transmission
• Comprehensive care & support
• Cost saving to the Health System
Diane from Femme Fatales (National Association of People Living with HIV Australia – NAPWHA) provided an update from the national network and discussed the current focus for the group. In addition, Diane encouraged women to attend further events and forums to ensure their continuance.
The WA AIDS Council’s HIV Positive Peer Educator, Liz Walker, presented on “All things Women & HIV”,
Liz provided some statistics, highlighting that globally 50% of people living with HIV are women, and in Australia, less than 10% of PLHIV are women. Liz acknowledged Australia has been long recognized for its response to HIV, which is largely attributed to the courage and determination of PLHIV in the face of adversity, regardless of their gender. Whilst this has been the response, there are gender specific issues and challenges in Australia when considering women living with HIV:
• Reproductive health
• Gaps in WLHIV research & aggregated gender data
• Particular issues for women relating to disclosure
• Lack of support networks in comparison to gay men
• Greater likelihood that WLHIV will live in outer suburban or regional areas
• Greater rate of HIV diagnosis amongst Aboriginal women
• High rates of WLHIV diagnosed with mental health conditions
The WLHIV were also grateful to hear from one of their peers, about her journey of wanting to start a family and the challenges and complexities of being the first women living with HIV in WA to conceive via IVF.
Feedback on the most useful and enjoyable parts of the Women’s Forum included:
“The personal stories given by women, very important to hear”,
“Presentations by different speakers, giving a holistic perspective on lives”,
“Being able to share experiences, work together in trying to improve and make changes”,
“Presentations done on disclosure, pregnancy, women and medication, in general all information presented was very relevant”
The success of the first Women’s Forum in WA has highlighted the benefit of WLHIV and health professionals collaborating together to achieve better health outcome and patient focussed care. We hope to provide further Women’s Forums in the future.