Keynote address to Thematic session of 49th UNAIDS Programme Coordinating Board, 10 December 2021
Thank you moderator, and also for the important work your team and UNAIDS does to strengthen data in the HIV response. It’s an honor to be asked by civil society and communities to join this important discussion on Human Rights Day.
I’d like to take this moment to reflect on the big picture. The hard truth is that funding for HIV is diminishing, and we urgently need data to make hard decisions. Who lives, who dies, increasingly depends on data.
But health data is not neutral: it is shaped by power and inequalities.
The study assessed the experience of sex workers, men who have sex with men, people who use drugs and transgender people in Africa with consultations for the Global Fund, UNAIDS and PEPFAR. An online survey had 99 respondents from 25 African countries, and I spoke with key populations representatives in Cameroon, Kenya, Malawi, Nigeria, Uganda, and Tanzania, as well as a focus group in Malawi. The report was cosponsored and co-authored by AMSHeR, the Africa Sex Workers Alliance, Gender DynamiX, and Transbantu Association Zambia.
42 percent of key populations who responded had been consulted on national HIV strategic plans, 33 percent on Global Fund funding requests, and 19 percent on PEPFAR operational plans
Many complained that consultation was cursory and tokenistic, and few had seen the final plans or budgets to verify whether their input was included
Participation was complex, time-consuming, and unfunded — it often involved taking time off from day jobs, or travel at the respondent’s own expense
Some described retaliation or threats from key actors in their countries if they criticized performance of existing programmes
Despite the challenges, most expressed determination to continue to engage, in order to press for meaningful change.
As we think about future development of mechanisms to manage funds for the Covid-19 response, what works and what does not, it’s important to hear and reflect on these voices. The report includes recommendations, which the report partners discussed in depth with the Global Fund, UNAIDS and PEPFAR at the time.
More broadly, perhaps we should think about a community HIV archive to save reports like these from vanishing…
Data is increasingly important in planning and decision-making, but data can also be biased and shaped by our assumptions and gaps in knowledge. When this gap-filled data is plugged into algorithms, it can amplify existing forms of discrimination.
For example, the global HIV response is being undermined by the fact that many governments deny the existence of the key populations at greatest risk — gay men and other men who have sex with men, sex workers, drug users, and transgender people. Since no data is gathered about their needs, life-saving services are not funded, and the lack of data reinforces the denial. This creates a data paradox which can warp national health priorities and plans.
As this Tedx talk explains, stigma, discrimination and inequality are systematically creating invisibility which can keep marginalized, stigmatized groups uncounted and unserved. To break the vicious cycle of this data paradox, we have to change the power relationships that keep some groups hidden and on the margins.
This fifth episode of the Right On Podcast, recorded for the American Anthropological Association annual conference, brings together co-hosts Meg Davis and Ryan Whitacre with medical anthropologist Prof. Cal Biruk and UN Development Programme policy officer Kenechukwu Esom to explore how human rights and quantification collide in the global HIV response.
To order from your local bookshop, try Indiebound – or if you’re not sure who that would be, go to Bookshop to order it online while supporting independent booksellers in general. The book is also available from Amazon, of course — but please support independent bookstores if you can. Wherever you get your copy, I’d be grateful for an honest review on Goodreads or Amazon – in our data-driven world, the more reviews it gets, the more visible it will be.
I had the chance to reunite with some of the Caribbean activists I wrote about in the book, who did their own community-led key population size estimates in 6 countries that had never had them before – as the book describes, they mobilized to draft the questionnaire, develop the research methods, interview hidden key populations, and analyze the data. Thanks to the amazing online HIV2020 conference organized by communities living with and affected by HIV, we were all able to reunite on Zoom and geek out about participatory action research. Watch the recording here. Look on the right-hand side of the screen for interpretation in Spanish, French, Portugese and Russian!
We’ll have more events soon – including an exciting one organized by AIDS activists, so please stay tuned.
The COVID-19 pandemic has brought questions around global healthcare financing and equitable access to treatments to the fore. But this is not the first time a spotlight has been thrown on the thorny issue of fair resource allocation in efforts to tackle global health issues. In her book, “The Uncounted: Politics of Data in Global Health” (Cambridge University Press), Dr Sara Davis considers how human rights issues can affect the data which underlie global healthcare funding. She looks closely at the indicators which drive resource allocation, the metrics used to measure success in tackling health issues, and the people whose experiences healthcare data often fails to capture. Ultimately, in a world of finite resources, this data plays an important role in determining who is more likely to live or die.
Interview with: Sara Davis (Graduate Institute of International and Development Studies, Geneva)
Host: Natasha Holcroft-Emmess
Producer/Editor: Christy Callaway-Gale
Executive Producer: Kira Allmann
Music: Rosemary Allmann
For decades, the International AIDS Conference has successfully convened a massive biannual meeting, bringing together a diverse community of scientists, researchers, activists and officials, as well as a smattering of celebrities. At a turning point with a battered global strategy and the devastation caused by a second global pandemic, COVID-19, the global AIDS movement has never been in more urgent need of such frank and diverse conversations. Sadly, the conference which launched online this week has never been more divided: while scientists and UN officials gather in the official meeting, AIDS 2020 Virtual, community activists have broken away to hold a parallel conference, HIV 2020.
As the International AIDS Conference holds its first virtual meeting, it’s time to consider the politics that create gaps in data for the fight against HIV, writes Sara L.M. Davis
This year was supposed to be a celebration – the year we reached the milestones set by the UN General Assembly to end HIV by 2030. But as the International AIDS Conference, the world’s largest meeting of HIV scientists, officials and activists, convenes online, it is clear that the world is far off track. Why? Continue reading →