When will policy and evidence catch up with lived experience?

By Fiona Hale

The coronavirus crisis has proved just how quickly major changes can happen when the stakes are high. But in contrast to the fast pace of change we are seeing in the current crisis, ‘the science’ of HIV as it affects women has moved at a glacial pace, and there are still huge gaps in the evidence base. Why have we had to accept this? This is a question that I asked myself again this weekend.

But first a bit of background.

It has been 28 long years since the International AIDS Conference in Amsterdam in 1992, when women living with HIV came together globally for the first time and took to the stage as the International Community of Women living with HIV (ICW). At this first meeting, ICW loudly expressed their ‘12 statements[1] of what was needed to improve the situation of women living with HIV throughout the world.

From 2003-2008 I had the honour and privilege of working for ICW in the International Support Office in London, UK, and have been involved as an ally in the backroom of the HIV movement since then.

I’m now part of the new collective, Making Waves, and we are seeing that the stakes are higher than ever. The urgent task is to ensure that within all coronavirus recovery plans we claim the rights of women to live safe, free, happy and healthy lives with full bodily autonomy, access to healthcare, education and economic justice. The current lockdown has been full of webinars and discussions about the Covid-19 crisis as an opportunity to assert and amplify women’s voices, and the pressing urgency of reframing our priorities for the kind of society women want.

Some weeks into lockdown, I spend a Saturday on the long-neglected task of sorting out a bookcase full of old papers. Flicking through a stash of papers I’ve kept since I left my role with ICW in 2008, I see the 12 statements. I also find ICW Vision Papers that were produced in 2004, advocacy asks, and a multitude of resources by amazing ICW women who were conducting peer-led research and advocacy projects and programmes around the world: the Voices and Choices project on sexual and reproductive rights of women living with HIV in Francophone Africa, Southern Africa, Thailand; the Young Women’s Dialogue programme where young women living with HIV analysed their experiences and formulated their advocacy agendas; the Silent Voices research and advocacy programme by and with women who use drugs; Positive Women Monitoring Change, a tool developed by women living with HIV to monitor violence against women, sexual and reproductive rights and access to care, treatment and support; Parliamentarians for Women’s Health, a programme to develop collaborative relationships with policy-makers and legislators led by women living with HIV in 4 countries in Africa. I find ICW News from those years, with articles by women living with HIV around the world on the importance of cervical cancer prevention and treatment for women living with HIV, the role of violence in the lives of women both before and after HIV diagnosis, the lack of scientific knowledge on how HIV affects women, the exclusion of women from clinical trials, the lack of meaningful involvement of women in decision-making, the invisibilising of women’s leadership, the challenges of accessing funding, and many more issues.

I come to a folder of the Sophia Forum’s early newsletters – the third edition, from September 2009[2], is about HIV and the health system. An article from Maura Mea in Papua New Guinea describes the obstetric violence and abuse she experienced. My article describes how it felt as a white, middle-class pregnant woman deeply involved in the movement of women living with HIV – though not living with HIV myself as far as I knew – to be carelessly told in my antenatal visits that I ‘didn’t need to worry’ about the routine HIV testing since I was not in the demographic, and not even be told the result of the test or given any advice about safer sex in the future (presumably having a negative test result and not being ‘in the demographic’, I still didn’t need to worry myself about that?). Silvia Petretti writes about the HIV stigma training Positively Women UK was carrying out at that time for doctors working in general practice (GPs) and dentists in London, and the lack of HIV knowledge, understanding and empathy she found. Angelina Namiba’s article explores the relationship between people living with HIV and GPs in the UK in more detail, including the concerns of people living with HIV around lack of GP knowledge and training, breaches of confidentiality, and lack of communication between GPs and HIV specialist clinics. All a long time ago now. I reflect that while the work of all these incredible women has led to some improvements, globally these challenges have not been overcome.

Then a folder of old publications from other organisations – UN agencies, NGOs, national networks of people living with HIV, organisations of trans women, sex workers, people who use drugs. Policy and advocacy organisations. Many of these publications were prepared for International AIDS Conferences by amazing activists, all hoping to get traction and bring about change.

I find two posters I was involved in for the AIDS conference in 2010, looking at the extent to which research published by the IAS is disaggregated by sex and relevant to women[3]. I also find flyers for a Salamander Trust session I was involved in with Alice Welbourn at the Vienna AIDS2010 conference’s Women’s Networking Zone: Beyond the Evidence Base: Rights and Justice for Women – will the Vienna AIDS Conference make a difference? The leaflet states:

‘In HIV policy-making, the evidence base is considered vital for ensuring that actions respond to realities rather than ideologies.’ It lists the key questions we wanted to raise:

  • Who is setting the research agenda?
  • Where are young women in the research agenda?
  • How does the evidence base improve things for women?
  • Why are issues important to women so under-researched?
  • Where are the gendered discussions of research findings?
  • Why are women’s experiences dismissed as ‘anecdote’?
  • And what can be done about this?

In that session Dr Shirin Heidari, then editor of the Journal of the International AIDS Society, strongly made the point that ‘Absence of evidence does not equal evidence of absence’. Yet time and again, the lived experiences women have shared with policy-makers have been dismissed because the ‘evidence’ was not there.

I didn’t touch the shelves of papers related to current projects I’m involved in – I know exactly what’s in there. Newly-released Salamander Trust reports on issues raised by women living with HIV in The WHAVE podcast, reflecting the chronic lack of funding for women’s rights work, the gaps in sexual and reproductive health services and rights for women living with HIV, the importance of recognising the expertise of women living with HIV. Drafts of resources for women experiencing domestic violence in the Covid-19 lockdown. Background research on the evidence base relating to obstetric violence for an organisation wanting to understand this issue. An outline of an advocacy paper with key asks on domestic and gender-based violence and HIV during the same current Covid-19 crisis. A funding bid for much-needed perinatal peer support for women living with HIV. Minutes of a meeting about supporting young people from refugee backgrounds in London during the Covid-19 crisis. Documents I want to reference, including a powerful statement from the Global Network of Sex Worker Projects calling for action and highlighting the exclusion of sex workers from Covid-19 social protection responses, which means sex workers are faced with putting their safety, their health and their lives at increased risk just to survive. All these issues are urgent, and are reaching crisis proportions in the current Covid-19 situation. It crosses my mind – yet again – that while the world is changing, women living with HIV are having to shout louder, but are not saying anything new. These things have been very urgent for a very long time.

The newest addition to my bookcase is the recently published book Data Feminism.[4] Having finished sorting the old papers, I sit down to read it. How it chimes! It reflects many of the things I’ve seen through my years as an ally of women living with HIV. Some things that particularly jumped out at me: the ‘feminist who question: Who is it, exactly, that needs to be shown the harms of […] differentials of power? And what kind of proof do they require to believe that oppression is real?’ The authors point out that people experiencing the oppression know it it is real, they already have all the proof they need through their lived experience. But then comes another ‘feminist who question: On whom is the burden of proof placed?’ And when the data women produce is ‘not “big” enough, not “clean” enough’, we fall yet again into the ‘pitfall of proof’. The authors refer to Candice Lanius’s 2015 blog post, summarising the ‘ample research on how those in positions of power accept anecdotal evidence from those like themselves, but demand endless statistics from minoritized groups’, and arguing that in those cases ‘more data will never be enough’.[5]

Even with all the lived experience women have, all the documentation of that lived experience that incredible activists and networks of women living with HIV have carried out, all the peer-led research, all the advocacy and policy work, all the quiet and loud discussions sometimes aiming to influence and other times to disrupt, women are still having to prove that what we say should be taken into account.

James Lovelock, the environmental scientist and proponent of the holistic ‘Gaia hypothesis’ that sees earth as a living organism, has said, ‘It takes about 40 years for new theories to be accepted.’[6] It is now 28 years that women living with HIV have been stating what is obvious to them based on lived experience, and expressing clearly what needs to change – 28 years of making the same demands, powerfully, over and over again, all around the world. It is 28 years since women living with HIV and their allies globally have been organising, researching, and advocating. We cannot wait another 12 years. Now more than ever, we need to make some waves.

[1] International Community of Women living with HIV (ICW) (1992), Twelve Statements.

[2] Sophia Forum (September 2009) In Sickness and in Health. Newsletter Issue 3.

[3] Poster 1) Hale, F., Collins, E., Binder, L., Gahagan, J. and Crone, T. (2010) ‘Gendered neglect: Does research published in the Journal of the International AIDS Society, 2005-2009, disaggregate findings by sex and discuss implications for women?’ XVIII International AIDS Conference, Vienna (poster presentation, July 21, 2010), and Poster 2) Collins, E., Hale, F., Gahagan, J., Binder, L., Crone, T. (2010) ‘Gendered neglect: how relevant is HIV research to women?’ XVIII International AIDS Conference, Vienna (poster presentation, July 21, 2010).

[4] D’Ignazio C and Klein LK (2020) Data Feminism. MIT Press.

[5] Lanius C (January 12, 2015) Fact Check: Your Demand for Statistical Proof is Racist. https://thesocietypages.org/cyborgology/2015/01/12/fact-check-your-demand-for-statistical-proof-is-racist/

[6] Milligan C (September 24, 2014) James Lovelock ‘The Revenge of Gaia’ Books & Debate at Corn Exchange http://www.bbc.co.uk/southerncounties/content/articles/2006/05/18/james_lovelock_review_feature.shtml