Australian women and the 90-90-90 targets: what does the data tell us?

HIV Australia | Vol. 13 No. 1 | April 2015

By Jennifer Power

The latest National HIV Strategy includes, for the first time, numeric targets for reducing the rate of HIV transmissions in Australia.

Based on the United Nations (UN) 2011 Political Declaration on HIV/AIDS, the targets aim to position Australia to achieve the UN objectives of 90% of people living with HIV being diagnosed, 90% of HIV-positive people receiving antiretroviral (ARV) treatment and 90% of people having an undetectable viral load – the 90-90-90 targets.

Achieving 90-90-90 will require a broad focus on the social experience of living with HIV/AIDS as much at it will on prevention and testing. Improving rates of care and treatment is more achievable in an environment where people living with HIV feel safe to disclose their HIV status. Issues that may affect this, such as poverty, discrimination and geography, become part of a mix of relevant issues.

Australia’s National HIV Strategy reflects this, specifically identifying the importance of quality health care and the creation of an ‘enabling environment’ in which stigma and discrimination are acknowledged as potential barriers to testing, care and treatment.

However, within the Strategy there is virtually no focus on women living with HIV – particularly women who sit outside target groups (sex workers, women from high prevalence countries, travellers, Indigenous women).

This is not surprising given women have always been a minority within the total population of people living with HIV in Australia. The 2014 National Surveillance data indicates that around 13% of new HIV diagnoses in 2013 were among women. Overall, 10% of Australian people living with HIV are women.

But ten percent is not an insubstantial figure – a perspective that can be lost within public health statistics. Efforts to achieve 90-90-90 will need to be designed with some reflection on the discrete needs and experiences of these women.

Women in research

There is limited research on women living with HIV in Australia. In part this is because it is difficult to attract funding for research with women, given it is likely to have less impact on the trajectory of the HIV epidemic as a whole—smaller numbers, smaller impact.

Women’s stories tend to become a sub-plot, buried understandingly in the Australian context within the central narrative of the lives of HIV-positive gay men. HIV Futures, one of the larger studies of people living with HIV (PLHIV) in Australia has, however, always had some representation of women.

HIV Futures is an ongoing, cross-sectional study of people living with HIV in Australia. The study has been run every two to three years by the Australian Research Centre in Sex, Health and Society, based at La Trobe University in Melbourne. The first version of the study was conducted in 1997 and the most recent (HIV Futures 7) in 2012.

Data collected through HIV Futures has played an important role in guiding policy, community and health service responses for people living with HIV in Australia and includes indicators for the National HIV Strategy.

There were 1,058 responses to HIV Futures 7¹ from HIV-positive people living across Australia. Of these, 70 responses (7%) were from women. This is a smaller number than would be ideal (something we hope to address in 2015, with HIV Futures 8), but 70 women is still sufficient to offer some insight into the social world of women living with HIV.

A picture of women living with HIV in Australia

So, what is it like to be a woman living with HIV in Australia?

Of the 70 women who completed the HIV Futures 7 survey, the majority were born in Australia or New Zealand (72%) and spoke English at home (84%). Just one woman reported that she was an Indigenous Australian.

Of those born outside of Australia, the largest group were from African countries including Botswana, Ethiopia, Kenya, Malawai, Rwanda and Zimbabwe.

There were two women born in South East Asia and a small number from Europe.

Participants included women from all states and territories of Australia. Fifty percent lived in a capital city or inner suburban areas, while 30% lived in a regional or rural area.

The average age of women was 45, although ages ranged from 25 through to 76. Some had been living with HIV for up to 30 years, whilst others had tested positive only several months previously.

The majority of women had contracted HIV through sex with men (75%), while 12% has contracted the virus through injecting drug use. Thirty-five percent had contracted HIV overseas.

Half the women (50%) had received their positive diagnosis at their first-ever HIV test. Many were tested because their partner or ex-partner had tested positive.

Family

The majority of women (85%) identified as heterosexual and 50% were in a regular relationship or married at the time of the survey. There were 12 women (17%) who were in an ongoing relationship with a known HIV-positive partner.

The majority of women who responded to the survey (71%) were parents. This included 33 women (47%) who were living with dependent children, 10 of whom were single parents (14%).

Motherhood was significant to many women, with 64% indicating that it was important or essential to their self-identity. Four women reported that they had at least one child who was also HIV-positive.

The impact of HIV on women’s lives

It is difficult to quantify the impact of HIV on any individual’s life and no research findings will ever tell the complete story. But there is always some indication.

There were stories of loss within the lives of some women who responded to HIV Futures 7. Two women had lost a child to HIV/AIDS, while eight had lost a partner to HIV/AIDS.

Almost half the women surveyed (48%) had been diagnosed with a mental illness at some point in their life. This included 40% who had been diagnosed with depression. At the time of the survey, 25% were taking medication for a mental health condition.

While it is likely that mental health problems were not directly related to HIV for many of these women, these are higher than average rates of mental illness.

Many women surveyed reported that HIV had affected their sexual and intimate relationships. For some, this was related anxiety about disclosing their status to potential partners whilst others reported that HIV had a negative impact upon their sexual pleasure or desire.

Indeed, there were 24 women (34%) who reported that they stopped having sex due to their HIV status. Despite this, a number of women reported that being diagnosed with HIV had helped them form more satisfying relationships (32%).

On another optimistic note, the majority of women responding to HIV Futures 7 did not regard HIV as having greatly affected their career or capacity to work. However, this was not the case for everyone.

Forty percent of women surveyed reported that being diagnosed with HIV had negatively affected their career path, with 12% indicating that contracting HIV ended their career.

Related to this, money was a source of stress for many women: 35% were reliant on a pension or social security as their main source of income; and around 68% reported they had difficulty managing costs of living such as paying for utilities.

Some women had also experienced discrimination at work following breaches of confidentiality regarding their HIV status.

Treatment, care and information

While the majority of women surveyed (81%) were currently taking ARV treatment, the number was below the 90% target.

Fourteen percent had previously taken ARVs and stopped, while less than 10% had never commenced treatment (although, of these, 85% said they would consider using antiretroviral drugs in the future).

Seventy-one percent reported that their viral load was undetectable at their most recent test; again, well below the 90% target. Of the women who had stopped taking ARVs, the most common reasons cited were difficulties taking the medication due to side effects and/or a recommendation by their doctor.

One woman noted she stopped for the first trimester of her pregnancy, while one other had wanted to see how she would go without medication.

Most women indicated that they were satisfied with the process through which their ARVs were prescribed and prescriptions were filled, although around 21% mentioned that they found it difficult and inconvenient to fill prescriptions at specialist locations and were keen for this to become accessible through local pharmacies.

Only a small number of women reported that the cost of ARV medication was difficult to manage.

Looking forward

While the findings presented here offer a useful picture of women living with HIV in Australia, it is worth noting some important gaps. Indigenous women are clearly under-represented in the HIV Futures sample as are migrant women and those who do not speak English as their first language.

That said, these findings do sketch some patterns that are worth noting. Many of the women surveyed did not consider themselves to be at risk of contracting HIV prior to their diagnosis.

Sitting outside affected communities, Australian women are less likely to be seeing GPs with a high HIV caseload and less likely to consider testing.

Anecdotal reports from young women recently diagnosed in Australia have suggested that HIV is not on the radar for women or their doctors when they first become ill.

The findings of HIV Futures 7 point to several issues that are likely to affect the care and treatment of many women living with HIV and these will be explored further in HIV Futures 8.

Mental health stands out as an area of concern. Whether or not there is a direct relationship between HIV and issues such as depression or anxiety, these findings certainly indicate a need to support mental health and wellbeing in women living with HIV.

From a public health perspective, positive wellbeing is associated with better physical health and greater capacity to engage in healthcare systems and self-care.

With indications that treatment rates and viral loads among women are below target levels, it is important that women are considered in efforts to achieve 90-90- 90.

The success of these endeavours will require a comprehensive understanding of the way that women with HIV access care and treatment within the contexts of their lives.

Data collection for HIV Futures 8 is open until 17 June, 2016.

There will be a dedicated focus within this survey on collecting information about the lives of Australian women living with HIV. For more information please contact jennifer.power@latrobe.edu.au.

Reference

1 Grierson, J., Pitts, M., Koelmeyer, R. (2013). HIV Futures Seven: The Health and Wellbeing of HIV Positive People in Australia, monograph series number 88. Australian Research Centre in Sex, Health and Society, La Trobe University, Melbourne. Retrieved from: www.latrobe.edu.au

Dr Jennifer Power is Research Fellow at the Australian Research Centre in Sex, Health and Society, La Trobe University. She is currently coordinating the HIV Futures study.