Working at the crossroads between human rights and HIV, we have come to see that HIV is best understood as a mirror. It reflects our stigmas and our discriminations back to us. In it we see a manifestation of the dysfunctions and inequalities of our own society. It also offers an exceptional opportunity to understand and act on these – if we are ready to do so. Silvia Petretti recently wrote a letter to her HIV virus on its 16th Anniversary, in which she expressed her gratitude for just this reason:
“I know that thanks to you I had to take a very good look at myself, and the world…I had to ask difficult questions to myself. Recognise my fragilities, and my responsibilities”
If we look at this mirror image in 2013, we see an increasingly female pandemic. Half of all people living with HIV are now women. Worldwide, HIV is the leading cause of death for women of reproductive age. Even in the UK, heterosexual sex has become the leading route of transmission for HIV. We need to ask the difficult question: why? What is making women vulnerable to HIV transmission?
Today, Valentines day, the Sophia Forum publishes its report into the need for a national investigation into gender-based violence as both a consequence and a cause for HIV in the UK. Violence, fuelled by gender inequality, is widely recognized as both a key determinant of women’s HIV risk and as a driver of the HIV virus. In response, the World Health Organisation has highlighted the importance of a meaningful integration of gender into HIV programmes in the health sector. Despite the extensive - and growing- body of international research into gender based violence and HIV, the UK has failed to recognize or to situate itself within this dialogue. For example, the NHS guidelines about Violence against Women in the UK currently contain no reference to HIV.
The report, developed from in-depth interviews with staff at specialist gender based violence and HIV focused support services, calls for a review of UK policy and practice. It is the first step of the very long and difficult journey ahead. As Marion Bowman wrote in a previous article on openDemocracy 50.50, of an estimated 30,000 women living with HIV; there are perhaps only 50 that are fully open about their positive status. Many of these women were instrumental in the realization of this report. No wonder then that convincing people of the relevance of this issue in the UK has not been easy. Getting funding for further research or services in this climate is incredibly difficult.
East London’s Homerton Hospital recently conducted the first ever UK based research into experiences of intimate partner violence for women living with HIV. It found that over half of respondents had experienced violence. Of these, 33% had experienced kicking and 20% rape. Yet what this shocking research doesn’t even begin to understand is how physical violence might be impacting other spheres of womens’ lives (not to mention their HIV treatment and adherence). Local advocacy groups see the evidence of the links between gender based violence and HIV as an everyday reality of their work.
‘I was taken to A&E for head injuries after he punched me and I passed out. I could not tell anyone because he kept threatening to tell friends and family about my HIV status so I remained with him and the abuse’ (Patience, 2008).
However, as the report demonstrates, we desperately need more research to promote wider national awareness and understanding. Presently, specialist HIV and gender based violence services tend to act independently of one another. Without a gendered understanding of HIV, services fall short. Many professionals are ill-equipped to support women with multiple and complex health and personal issues simultaneously. Fundamental to resolving these problems will be revised healthcare policies and an ongoing commitment to training of professionals. This will enable staff to detect violence and to recognize the barriers inherent within the healthcare system itself that constitute institutional violence. A commitment to upholding the human rights of women living with HIV is essential.
The emergence of self-disclosure as the main route for HIV services to identify gender based violence illustrates the kinds of challenges we still face in the UK in relation to silence and stigma. One report found that whilst 96% of HIV positive survey participants were registered with a general medical practitioner, 60% would not disclose their HIV status because of the fear of judgmental treatment or breaches of confidentiality. Fear of HIV-related stigma prevents women from accessing care and support. Not surprising, as perceived stigma is frequently borne out as reality.
A Pozfem member reported this year that “One of our colleagues, when pregnant last year, was asked by her healthcare providers: ‘what on earth are you doing getting pregnant’?
This is England, with all the medical care, treatment and information available, and clear BHIVA (British HIV Association) guidelines, which reflect that it’s both a woman’s right to have children, irrespective of her HIV, and that she can have a 99% chance of her baby being born HIV - free, even with a normal delivery. Such attitudes from health staff are extremely damaging.
Today's report should serve as a timely wake up for all of us living in the UK that condemn human rights abuses. Migrant women with HIV are particularly badly treated. Nearly half of people with diagnosed HIV in the UK are from black and minority ethnic backgrounds; three-quarters of these are Black African. Experiences of migration and gender-based violence are strongly entangled, both at an individual and a societal level. One interviewee told of a female client who, despite being repeatedly hospitalised due to physical violence, was unable to access publicly funded refuge accommodation. The report also stresses the need to integrate financial abuses into our understanding of gender based violence against women with HIV. One delegate related that this is more commonly reported in clinical settings than physical violence. Violence which includes financial abuse can be simple but devastating: not having access to enough money can mean not being able to afford to travel to hospital.
There are a multitude of factors that come together to create the kinds of “layers of stigma” experienced by many women living with HIV in the UK. Yet what is most clear is that inequality and discrimination thrive at precisely these intersections. The Sophia Forum report calls for national recognition as both a public health and a political issue. The ability of women to protect themselves against HIV and to live safe and healthy lives with HIV is impaired by gender based violence in all its forms, and it demands an equally intelligent and holistic response. The time has come that we, as a society, should look towards HIV to show us our “fragilities” and “responsibilities” and learn from them. How we now respond depends on what kind of society we want for ourselves when we look into the mirror.