Welcome to our house: women living with HIV

The results of the largest ever international survey of women living with HIV were formally published last week and they do not make a comfortable read. The gender-based violence (GBV) and mental health issues faced by women living with HIV after their diagnosis are both very high and have a huge impact on their lives. This includes GBV in healthcare settings. Yet as the findings reveal, neither of these issues is being addressed by global policy makers.

The survey, which formed part of a global “values and preferences” consultation, is not the first of its kind, but is the largest, in terms of numbers and its international scale. Conducted in 2014, it was commissioned by WHO as they begin the process of updating their 2006 Guidelines on the SRH of women living with HIV. Furthermore, it represents a “first” in terms of using  participatory methods in WHO guideline development. 

The consultation, comprising an on-line survey and a series of focus group discussions, was led by Salamander Trust, with ATHENA, GNP+, ICW, and the Transgender Law Center, among others. A global reference group, made up of 14 women living with HIV from around the world and representing women from different backgrounds and contexts, conducted a pre-consultation to elicit priority themes to include in the survey, and helped roll out the survey among their networks and communities. Nearly 1,000 women living with HIV from 94 countries engaged in the survey, including sizeable numbers of women with experience of drug use, sex work, homelessness, prison or detention, rape or sexual violence, migration, and conflict, transgender and lesbian, bisexual and other women who have sex with women and heterosexual women.

“Before HIV, I was victim of different types of violence (physical, psychological, financial) besides the impact my partner’s alcoholism and machismo; this lead me to get several STIs, including HIV." (El Salvador).

The survey contained one introductory mandatory section and eight optional sections, covering different themes. Gender-based violence (GBV) was reported in all sections. Eighty-nine percent of 480 respondents to the optional section on gender-based violence (GBV) (58% of all survey respondents) reported having experienced or feared violence, either before, since and/or because of their HIV diagnosis. GBV reporting was higher after HIV diagnosis  from their intimate partner, or from family or neighbours, from the wider community, from healthcare settings and/or from police or prison staff. Whilst we have known for some time that violence against women is a factor that increases women’s vulnerability to HIV by 1.5, these results clearly confirm GBV in many contexts as a consequence of HIV also, with increased intimate partner violence (IPV) rates too.

“When I was newly diagnosed and had lost about 40Kg my neighbours and members of my church choir started avoiding me and in fact disallowed their children to come to my home and my son to enter theirs. It was such a painful experience for me." (Nigeria).

The respondents described a complex and iterative relationship between GBV and HIV occurring throughout their lives, including breaches of confidentiality and lack of sexual and reproductive health choice in healthcare settings, including forced or coerced treatments, human rights abuses, moralistic and judgmental attitudes (including towards women who identify as transgender, lesbian, bisexual, drug using and/or doing sex work), and fear of losing child custody.

“The moment a woman identifies herself as living positively with HIV, they are neglected especially during delivery hence increased number of children born with HIV because women prefer to keep it a secret and be treated like the rest. Others have avoided giving birth from health centers . . . because of negligence in those hospitals. They prefer traditional birth attendants." (Uganda).

Only 11% of all respondents to this section reported never having experienced GBV in any form. Respondents recommended that healthcare practitioners and policymakers address stigma and discrimination, training, awareness-raising, and human rights abuses in healthcare settings as a matter of urgency. The report authors note that gender-based violence is not something that is currently addressed meaningfully in any global policy that concerns issues relating to women living with HIV. Notably, this critique applies also to the just released  “2015 Progress Report on the Global Plan towards the Elimination of new HIV Infections among Children and Keeping their Mothers Alive”. In this report, it is very dispiriting  to see that violence is still not mentioned, despite others having criticized the Global Plan previously on that count and despite the report from the survey we are discussing here being widely available for the past 11 months.

The results regarding mental health were equally stark.

‘‘I have lost friends, and have a hugely restricted social circle from before I was diagnosed with HIV.’’ (UK).

82% of our respondents reported symptoms of depression while 78% reported rejection. These results compared to 1/5 of respondents reporting mental health problems before diagnosis. 

“Family members are blaming me for the death of my husband,I fear to disclose my status to even my mother because she will isolate me from my siblings and use me as an example in every case.” (Uganda).

The respondents discussed how HIV-related stigma and mental health issues presented them with challenges both in engaging in and asserting agency and control within sexual/intimate relationships. They described both shame and fear as barriers:

“I have stopped engaging in sexual relationships since being diagnosed. I feel embarrassed and will never disclose to anyone.” (Nigeria). 

“The issues around dating and having to talk to your lover or partner about your status at times brings anxiety, fear and depression of being rejected.” (Kenya). 

Some women felt more vulnerable to unsafe sex as a result of their low self-esteem:

“It makes me less assertive and I sometimes give permission to my partner to take advantage of me by having sex when I would rather not.’’ (Nigeria).

The original survey report presented its findings using the metaphor of a house to show how all the issues addressed by the respondents are inter-connected. The image shows how SAFETY is placed as the deepest foundation. And mental health is one of the key roof sections. All these sections of the house are integrally connected in a woman’s life. In order to achieve their sexual and reproductive health and human rights, all these different aspects of a woman’s life need to be considered. As the report explains, there is both intrinsic and instrumental sense in seeking to achieve these rights: both in a woman’s own right, and - just like putting your own oxygen mask on first in an aeroplane - in order for her also then to be better placed to care for the children, partners and other community members for whom women around the world so often seek to care.

To separate all the different sections of a woman’s life into silos, whilst it may seem more convenient for policy makers and health-service or other providers, means that one rapidly loses sight of the bigger picture: of how the many, complex and inter-related challenges facing women living with HIV around the world connect with one another.  As the lack of any mention of GBV in the Global Plan report above shows, there appears within the UN to be a curious cognitive dissonance in its global policies around women in relation to their own happiness, health and safety and that of their children especially. In relation to HIV and children, there is some disconcerting mental slippage that assumes that the health and well-being of a child may somehow be completely unconnected to the happiness, health and safety of her mother; or that somehow the mother may indeed herself be carelessly to blame for the child’s problems.

Meanwhile, for those women with HIV who are not mothers or partners, there is instead a distinct paucity of health or any other services across the lifecycle. It therefore often appears that issues facing women with HIV are only to be addressed if their own HIV could potentially spread to others around them. Either way a woman with HIV gets short shrift.

WHO Guidelines Development Group meeting in Geneva

At a meeting of the report developers with WHO in January 2015, the survey report was first presented to members of the Guidelines Development Group by several of the 14 women living with HIV from around the world who shaped this survey from its outset. The women shared their own stories to illustrate the personal dimensions of the report’s findings. This Guidelines Development Group will now take forward the process of updating the WHO Guidelines. They have listened to and engaged with the findings of the consultation; have heard from the mouths of women living with HIV their experiences, their realities and priorities in the areas of life course transitions; of the desire for positive sexuality; of experiences of violence and diversity; and of mental health matters. They have put themselves, for a moment, into the shoes of women living with HIV, and have walked around in them; and have imagined entering the loving warmth and security of our “house built on firm ground.”

“This has been the best part of all the guideline writing process. I was anxious about the whole process because it is usually quite a task, but after listening to your presentations I am not anxious at all anymore.” (Member of the Guidelines Development Group, WHO).

With two articles about the gender-based violence and mental health challenges faced by women living with HIV published last week in a leading scientific journal, we hope that the global community of policy-makers, academics and clinicians will incorporate these issues into their work as a matter of urgency. We also look forward with great anticipation to the updated World Health Organisation Guidelines.

Alice Welbourn and Luisa Orza

openDemocracy