The NGO Delegation's Communique for the 49th UNAIDS PCB Meeting

The NGO Delegation's Communique for the 48th UNAIDS PCB Meeting is already out. The Communique contains the following sections: Report of the Executive Director; Report by the NGO Representative; Leadership in the AIDS Response; HIV in prisons and other closed settings; 2022-2026 UBRAF Output and Indicators and revised 2022-2023 Workplan; Evaluation; Follow-up to the thematic segement from the 48th PCB meeting; Report of the progress on actions to reduce stigma and discrimination in all its forms; Thematic Segment – “What do the regional and country-level data tell us, are we listening and how can we leverage those data and related technology to meet our 2025 and 2030 goals?”

You may download the PDF version of the Communiqué (with photos from the virtual PCB meeting) here.






The 49th PCB meeting was the sixth virtual PCB meeting (including the two Special Sessions in between) since the COVID-19 pandemic restricted international travel and face-to-face meetings in 2020. The NGO Delegation was a little more adjusted in dealing with this virtual meeting modality, despite the increased hours it required in terms of their engagement. The pre-meetings were somehow uneventful as minimal discussions took place. Even the official PCB meeting itself from Dec 7-10 consisted mainly of PCB members giving out the usual statements in response to the agenda items. The interactions were more intense in the drafting rooms where crucial decision points were debated on, especially on the NGO Report, UBRAF indicators, and the reports on HIV and prisons and progress on actions to reduce stigma and discrimination. Similar to previous PCB meetings, the same Member States were raising the same questions with the same arguments, i.e., questioning definitions such as key populations, societal enablers, etc., which tended to delay or derail the decision-making process. This will be an ongoing challenge for the PCB and specifically the NGO Delegation to strategize on and address in future meetings.

Agenda 1.3: Report of the Executive Director

Iwatutu Joyce Adewole, Africa Delegate

The report of the Executive Director, Winnie Byanyima, made mention of the milestones in 2021, foremost of which was the adoption of the Global AIDS Strategy 2021-2026 and the new Political Declaration on HIV/AIDS. Apart from these new HIV guideposts, the report also highlighted the Joint Programme’s continuing partnerships with governments, development agencies, and civil society, as well as achievements in improved HIV services delivery despite the disruption of COVID-19 in many countries, particularly in the Africa region.

The EXD is hopeful that countries will support and implement the targets in the Global AIDS Strategy, scale-up support for community-led responses, and adopt human rights approaches by removing legal, policy, programmatic, and societal barriers that hold the HIV response back.

The NGO Delegation’s intervention reiterated the priorities of the Global AIDS Strategy and Political Declaration, and the important role of UNAIDS in fighting not only HIV, but also vaccine inequity. The Delegation stressed that lack of funding may bring failure to the global response and how the realignment process has impacted on UNAIDS Staff. We further urged Member States and donor nations to fully fund UBRAF and step up bravely, the way communities affected by the epidemic would and have always done in these times.

Agenda 1.4: Report by the NGO Representative

Andrew Spieldenner, North America Delegate

Each year, the NGO Delegation puts together a report meant to focus on a particular issue that is key or emerging in the HIV response for civil society, key populations, and other marginalized groups. In 2021, the NGO Report covered societal enablers and their importance in the HIV response. The topic was selected due to the ongoing resistance to societal enablers in 2021’s Global AIDS Strategy and the United Nations Political Declaration on HIV.

In researching this report, the NGO Delegation discovered that diverse multi-sector partners believe in societal enablers, but few agreed on their definitions, appropriateness, or scalability. UNAIDS has specified three areas as societal enablers for the HIV response: removing gender-based violence; punitive laws and policies; and stigma and discrimination.

With these lenses, the report highlights the harms of: violence and the lack of social protections; criminalization against HIV-status, drug use, sex work, gender identity, and same-sex sex practices; and the contexts of stigma and discrimination in healthcare, education, employment and communities. The Decision Points (DPs) recall the most ambitious targets of the Global AIDS Strategy and the Political Declaration, and highlight the importance of targeting the 10-10-10 in the HIV response.

The NGO Delegation knew that focusing on societal enablers - especially on the issues of scalability and their role with key populations - could be potentially controversial. The Co-Sponsors were overwhelmingly in support of the NGO Report, as were a majority of Member States on the PCB. There were long negotiations on the wordings of the DPs and the definitions of key populations. Some of the Member States raised the question of resourcing these endeavors - a question which has consistently emerged as Member States are supposed to take more ownership of their HIV response. In the end, the NGO Delegation was successful in contributing to further demonstrating the need for scalable societal enablers in education, employment, healthcare, social protections and decriminalization for key populations and other marginalized groups (including adolescent girls and women in all their diversity).

Agenda 2: Leadership in the AIDS Response

Violeta Ross, Latin America and the Caribbean Delegate

In the session on Leadership in the AIDS Response, Dr. Salim S. Abdool Karim from the Centre for the AIDS Programme of Research in South Africa (CAPRISA) presented the path forward for HIV control, with emphasis on how coronavirus and its variants impacted this context. He referred to the unmet needs in HIV prevention, the most affected populations in different regions and the long path to the agreed goals of 90-90-90.

The resurgence of HIV-associated stigma combined with the stigma of coronavirus is an emerging battle we need to fight. In almost 40 years of the HIV response, we learned the impact of stigma in the realization of the right to health. As we continue to respond to coronavirus and its variants, we cannot allow the resurgence of HIV stigma.

The NGO Delegation raised concern over the presentation of the one person with HIV with compromised immunity who was detected with the Omicron variant. This unfortunately, was misinterpreted by the media, blaming people living with HIV for yet another virus. We asked Dr. Salim and other scientists to use this information with care, especially when dealing with mass media.

The Delegation also emphasized that the leadership of the HIV response during the coronavirus pandemic implies a fast and agile response to COVID-19, but also the ability to maintain and sustain the gains in the AIDS response.

Agenda 3: HIV in prisons and other closed settings

Jonathan Gunthorp, Africa Delegate

Prison services are subject to strange contexts. In the USA, prisons are a state function and so there is no national mandate allowing for USA commitments. Elsewhere, prisons mostly fall under justice or security clusters in governments and are in many places seen as instruments of punishment and not of rehabilitation. Often prison health is isolated and unaccountable to health ministries.

These, and many other oddities, lead, in most member states, to poorly funded prison health & HIV programmes, and often to poor health outcomes for incarcerated people living with HIV and other key populations. Increasing use of legal persecution of key populations, especially among people who use drugs and sex workers, along with minorities, political opposition, and a skew towards incarcerating people of colour, exacerbates the situation.

At the PCB, it became clear that a range of Member States worldwide will continue battling to define prisons as being outside of the global AIDS response, and to limit the health rights of prisoners. It’s worth thinking at this point how best CSOs in HIV find CSOs in prisons rights, and strategize how to ride a wave of new thinking - particularly in OECD countries – on prison & justice reform, and to expand the thinking into action across all regions.

Agenda item 4: 2022-2026 UBRAF Output and Indicators and revised 2022-2023 Workplan

Jonathan Gunthorp, Africa Delegate

The UBRAF indicators and workplan that were presented at the 49th PCB meeting was more improved than the previous versions had been. Scores of changes had been demanded – some of them contradictory – but many had been incorporated. And yet by the end of the meeting, one might have been forgiven for thinking that some donor member states had resorted to budget bullying to get their own way on how exactly they would see UNAIDS moving forward, and that their chosen instrument was the UBRAF.

The endgame appeared to say, “we won’t fund UNAIDS fully; you need to make significant cuts now; and we insist on oversight of what you cut and what you keep.” This is perhaps understandable and even justifiable oversight of tax-generated donor funds (the deliberate decision to underfund and thus partially disable the Joint Programme is, however, unforgivable). It has the unfortunate and seemingly deliberate consequence of skewing the Joint Programme alignment with the Global AIDS Strategy, into a budget cutting exercise.

Civil Society and communities need to keep advocating for a fully funded UBRAF and a strengthened UNAIDS that is enabled to support and facilitate implementation of the Global AIDS Strategy and on the Political Declaration. But our advocacy needs to support transparency and a range of better accountability at every level and with cosponsors, as well as on issues of community and community service delivery funding.

Agenda 5: Evaluation

Alexander Pastoors, Europe Delegate

This agenda item covered the annual report on evaluation and the evaluation plan for 2022-2023. The conference room paper in connection with this agenda item was a report on the evaluation of the work of the Joint Program on preventing and responding to violence against women and girls.

Generally speaking, the members of the PCB spoke very positively on the papers and reports submitted by the secretariat. It appears that since the establishment of an independent evaluation office that reports directly to the PCB, both the quality and relevance of the programs evaluated have improved. PCB members, including the NGO Delegation, also agreed that the topics selected to be evaluated in the evaluation plan were relevant and important in light of the strategic result areas of the new UBRAF.

In response to questions raised by the NGO Delegation and other PCB members on the follow-up of recommendations described in the conference room paper, Secretariat informed us that most of the recommendations were already integrated in the latest version of the UBRAF and working plan for the next biennium.

Agenda 6: Follow-up to the thematic segment from the 48th PCB meeting

Violeta Ross, Latin America and the Caribbean Delegate

In the follow up of the Thematic Segment of the 48th PCB “COVID-19 and HIV––sustaining HIV gains and building back better and fairer HIV responses”, the NGO Delegation emphasized the diverse roles that communities living with and affected by HIV did during the COVID-19 pandemic and until the present day. People living with HIV and affected communities continue to experience the direct and indirect impacts of the COVID-19 pandemic, not only in the regions that are epicenters of the pandemic, but in all regions of the world. The PCB called on Member States to sustain community-led and community-based initiatives to respond to the HIV and COVID-19 pandemics. Delegates acknowledged how the COVID-19 pandemic challenged most health systems. Despite progress in vaccination and the measures to mitigate coronavirus outbreaks, there were disruptions in the provision of antiretroviral medications and HIV prevention supplies, as well as resurgence and increase of stigma, discrimination, and gender based violence. As we enter the 4thwave with new variants of coronavirus, it is important for people with HIV and affected communities to raise awareness about the indirect impact of the pandemic, which is leaving HIV behind in the development agenda.

The NGO Delegation hopes the pandemic can be transformed into an opportunity for re-opening the global health debate, especially the sustainable financing of HIV and COVID-19 responses.

Agenda 7: Report of the progress on actions to reduce stigma and discrimination in all its forms

Jumoke Patrick, Latin America and the Caribbean Delegate

The report on the progress of the actions to reduce Stigma and Discrimination in all forms discussed how stigma and discrimination were addressed in the Global AIDS Strategy and UBRAF. The report also mentioned Joint Programme-supported country efforts to end HIV-related stigma and discrimination in numerous ways, through joint and agency-specific efforts, and through the Global Partnership for Action to Eliminate all forms of HIV-related Stigma and Discrimination (the Global Partnership).

The report pushed for continued efforts to reduce all forms of stigma and discrimination and called for renewed political commitments, especially on the part of Member States for the achievement of the 2025 targets. The report concluded that HIV-related stigma and discrimination continues to hinder access to and use of HIV prevention, testing and treatment services, and constitute major barriers to ending AIDS as a public threat by 2030.

This agenda item followed mere formalities during the PCB and did not have an extensive floor discussion or any disagreement. Interestingly, while there were some debates about the proposed DP that encouraged Member States to join the Global Partnership, most of the PCB members were largely in agreement with the DPs. The NGO Delegation supported the DPs and delivered floor interventionsto reaffirm our position and reminded the PCB that ‘it’s time we do more, be more, invest more and care more’ for People living with HIV, key populations, and communities impacted, to ensure equality and equity for all and the ending of HIV related discrimination in all its forms.

Agenda 10: Thematic Segment – “What do the regional and country-level data tell us, are we listening and how can we leverage those data and related technology to meet our 2025 and 2030 goals?”

Jonathan Gunthorp, Africa Delegate

When do we have enough data to help communities access better services and lead a better quality of life, and when too little? Who monitors the data collectors, and do we trust them all? Are data neutral, can they be harmful, and can we mitigate the harm? The data thematic at the 49th PCB meeting grappled with these questions and with possible solutions and examples of good practice.

By the end of the session, some things were very clear. Data are essential to health. Not only to achieve a more focused and better-quality health for all, but also to more effective design and delivery of HIV programming and health for all. A health practitioner who can dial up a wider range of my health data can better understand me, treat me, and refer me for social and other needed services. Conversely, the more data stored on me, the greater the dangers of abuse. Commercial interests are predatory, and Member States are not always benign. Both have used data to discriminate against, attack, and persecute key populations and others. Big agencies working in health have difficulty admitting this in public or even to themselves.

What is urgently needed is more community participation in data collection and use; increased rights of individuals to control their own data; and a global mechanism for recognizing data privacy as a human right.

This conversation is just beginning and will continue on to the 50th PCB meeting in June 2022.

The NGO Delegation would like to thank our outgoing Delegates who served their three-year term with steadfast commitment, vigor, and substantial contributions to the debates and deliberations at the PCB:

Jonathan Gunthorp, SRHR Africa Trust, Africa

Jules Kim, Scarlet Alliance, Australian Sex Workers Association, Asia-Pacific

Alexander Pastoors, Hiv Vereniging, Europe

Andrew Spieldenner, United States People Living with HIV Caucus, North America

We would also like to wholeheartedly welcome our incoming Delegates who will serve their term from January 2022-December 2023

Mubanga Chimumbwa, Zambian Network of Young People Living with HIV, Africa

Midnight Poonkasetwattana, APCOM, Asia-Pacific

Aleksey Lahov, Eurasian Harm Reduction Association, Europe

Dinah Bons, Trans United Europe – BPOC Trans Network, Europe

Christian Hui, Prevention Access Campaign, North America

Cecilia Chung, Transgender Law Center, North America

49th PCB - Intervention by HIV Justice Network - Agenda item 10 - Thematic Segment

Delivered by Julian Hows, on behalf of the HIV Justice Network

Thanks for the opportunity to comment. In the interests of time, I will skip the niceties except to say that I love you all, but do not agree with the retrograde positions expressed by some of you on behalf of your countries.

I speak on behalf of the HIV Justice Network. We are a global information and advocacy hub for individuals and organisations working to end the inappropriate use of the criminal law to regulate and punish people living with HIV

Of course, we agree that responses are most effective it they are data and evidence driven,

However, and I do not want to appear like the bad fairy in the movie Sleeping beauty and try to put the entire process to sleep for one hundred years, but I need to be like Jiminy Cricket in the movie Pinocchio and raise issues of conscience and ethics to inform how we move forward.

Data and evidence are double-edged swords. Though utilising and using the advances of data and related technologies offer enormous potential, they also introduce the potential for extensive harm. As someone living with HIV, a gay man, a drug user, part of the sex worker community, when harm comes knocking it will be at my door, and the doors of my friends; especially those who do not, like me, live in the enlightened land of the tulips and windmills, the Netherlands.

Within the background paper:

We especially welcome the acknowledgement in para 5 that Community-generated data are an additional pillar of HIV response information systems...

But as others have mentioned such community generated data need also to be community designed and driven and the results used to go beyond improving service provision of biomedical; interventions; often they are not. To achieve our targets, they must be designed as part of improving the quality of life of people living with HIV and other communities, and our communities need to be properly resourced and supported to be able to do this.

Such data gathered also needs to be free from being sequestered by governments or others such as law enforcement, immigration services – and robust mechanisms need to be in place ensure this

There are many instances, which I am sure all of us in this room have examples of, where individual or aggregated data has been ‘leaked,’ data use guidelines and legislation have been breached, information obtained for one purpose has been used for another: sometimes for the good but very often not.

So, as we go forward are we really listing enough to concerns, is achieving equity (even if not equality) part of our vision? Are we seriously thinking through how we are protecting privacy? …and yes those fundamental principles (regrettably still seen as ‘dirty words’ by some in this room) such as human rights, bodily autonomy, and gender sensitivity need to be a full and valued part of this discourse, and the communities who are sometimes not even acknowledged as being communities or their very identities making them subject to discrimination, arrest, imprisonment, or worse, need to be part of that discussion.

For unless we address these issues, these advances will just add to the perpetuation of the patriarchy; and we know the patriarchy hinders rather than helps our work, and indeed human advancement.

Thank you for listening

49th PCB - Intervention by Canadians for HIV Criminalization Reform - Agenda item 10 - Thematic Segment

Delivered by Alexander McClelland

Thank you for allowing me to comment today. I am a person living with HIV, a criminologist at Carleton University’s Institute of Criminology and Criminal Justice, and an advocate with the HIV Justice Network’s Global Advisory Panel.

I come to you from unceded Indigenous Algonquin territory, the city of Ottawa, the capital of Canada – which has the shameful record of being a leading country in the world for using punitive laws to criminalize people living with HIV and is also a global innovator on genomic surveillance. I’m here to speak to paragraph 53 in the thematic segment background note.

Researchers and public health practitioners are conducting genomic surveillance and research in countries – like mine - which actively criminalise HIV non-disclosure, exposure, and transmission, as well as countries which criminalize and surveil people who use drugs, people who sell or buy sex, migrants, and gender and sexual minorities.

HIV experts and advocates have raised a series of human rights concerns about the use of genomic surveillance data and technology which is being widely implemented without community consultation or oversight.

Concerns include: consent and bodily autonomy – often our blood is used for surveillance without our knowledge, counter to medical ethics; increased stigma towards targeted communities who are viewed as vectors of disease within so-called ‘clusters’ or ‘transmission risk networks’; privacy and data protections – as multiple sensitive data sources are shared for such research with limited legal oversight; whether the technology can be used to “prove” direct transmission; and as a result how such data and technology may intensify HIV criminalisation within communities who are already made to be marginalised and oppressed.

I was a co-author on the recent report from Positive Women’s Network and the HIV Justice Network - MOLECULAR HIV SURVEILLANCE: A GLOBAL REVIEW OF HUMAN RIGHTS IMPLICATIONS – where we examined over 100 academic research and NGO documents on genomic surveillance and research from around the world to examine the consequences for human rights, bodily autonomy, and dignity of people living with HIV.

Our findings call on decision makers to:

Take seriously and act upon community concerns about genomic surveillance.

Respect the bodily autonomy and integrity of people living with HIV.

Implementers of genomic surveillance must demonstrate a clear measurable benefit that outweighs the potential harms of this technology and ensures data privacy and legal protections.

Providers using genomic surveillance must implement informed consent with people living with HIV about how their blood and data are being used. People must be allowed to withdraw consent if they so wish, without fear of negative consequences to their HIV treatment and care.

Implementers of genomic surveillance must publicly advocate against punitive or coercive laws and policies aimed at people living with HIV and ensure that genomic data is never used in criminal, civil, or immigration investigations or prosecutions.

We must guarantee that people living with HIV are at the center of decision-making on how data about our lives is used. We must help realize HIV data justice. We are people, not clusters. Thank you.

49th PCB - Intervention by Jonathan Gunthorp - Agenda item 10 - Thematic Segment

Delivered by Jonathan Gunthorp, Africa, on behalf of the NGO Delegation

Thank you Chair

I thank all the speakers, and I particularly want to reference Winnie Byanyima & Meg Davis’ inputs, and their references to communities. I want to throw at delegates a number of data points researched by civil society and in the last six to eight weeks put before five Parliaments, twelve member states, and one regional economic community, and that have influenced tow regional SRHR and HIV agreements in my region.

The numbers are: there are 112 million adolescents and young people in southern Africa of whom 55.8 million are adolescent girls and young women, of whom some 11 million are on contraceptives, while some 20 million are not even seeking access to contraception.

There are 1.7 million positive living adolescents and young people of whom some 400,000 are not yet on ARVs, while a full 45 million still lack sufficient knowledge of HIV today, 10 December 2021.

And in a recent survey on GBV reporting at a national level in a member state, two out of three rape victims were 13-18yr old girls; two out of three of rapes were perpetrated by family, neighbours, or lovers; and two out of three rapes took place in the victim’s own home in daylight.

And moving beyond these figures, communities ask and answer questions that numbers don’t tell, like do girls get pregnant and drop out of school, or do they drop out of school and then get pregnant, or do they get pulled out of school for poverty reasons and then get married or or or….we need skillful community asking to answer questions about perpetrators, stigma, attitudes and other less numerical but no less real issues.

Chair, what is the point of all these figures? It’s about community, and two lessons about data. firstly, big data can be curated and projected by small people. And secondly, small data, when taken up by big-mouthed communities, cantalk big.

I thank you.

49th PCB - Keynote Speech - Agenda item 10 - Thematic Segment: What do the regional and country- level data tell us, are we listening and how can we leverage those data and related technology to meet our 2025 and 2030 goals?

Delivered by Sara (Meg) Davis Ph.D., Senior researcher, Graduate Institute, Geneva

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, 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.

Who does the counting? Who gets counted? Who owns the data? The answers to these questions reflect deep historical disparities, among and within countries, that have shaped the HIV epidemic and the response. These disparities shape the data we have, and the data we lack. To get better data, we must address these inequalities.

Let me explain. In my research, I’ve seen that community-led HIV organizations often have rich data about clients -- because they have their trust. But this richness is rarely reflected at national levels, where the data is plagued with gaps. And at global levels, we wind up working with mathematically modeled estimates.

These gaps in data are acute for key populations. The UNAIDS World AIDS Day report tells us that key populations and their partners account for 65% of new HIV infections. But key population size estimates may be off by 50% - many countries have no data at all. Why?

The answer, I argue, has to do with power: What Baral and Greenall call a data paradox. Politicians may deny key populations exist – they say, “there are no men who have sex with men in my country” or “there are no drug users, sex workers or transgender people”; so no research is done about their urgent health needs. The lack of data means services that could save their lives are not funded -- and the lack of services reinforces the lack of data. It’s a vicious cycle of inequality in which absence of evidence is used as evidence of their absence.

We could end HIV. We’re not, and it’s in part because of uncounted people.

But in good-faith efforts to address this problem, we run into another form of power: historical inequalities between Global North and Global South. Some donor countries put pressure on implementers to produce data on key populations, improve coverage, or risk losing funding. And sometimes that pressure from outside does help people at the local level.

But other times, donor pressure can backfire. National health officials may be caught between a rock and a hard place: between the threat of losing funding on which they

depend, and the threat of backlash and violence if the true size of key populations becomes widely known.

Stuck between a rock and a hard place, what breaks? The data. Some health agencies do the size estimate, but never publish the data. Others appear to artificially reduce size estimates so they can report higher coverage, hoping donors will be impressed with their success, and keep the funds flowing.

Still others take that pressure from donors and pass it on to communities; at the moment of their greatest vulnerability, when they need health services, communities are asked to give up their locations, biometrics, real names, ID numbers, names of partners.

But this data can be volatile. In the wrong hands, data on women, key populations and people living with HIV can expose them to discrimination, arrest, hate crimes, intimate partner violence. These crimes are often not reported. Out of well-grounded fears, many will avoid health services and avoid being counted.

Colleagues, we are all – the whole global HIV response -- stuck in this data paradox. Political power shapes the data we have and the data we lack. If we keep doing what we’ve always done, we’ll get the same results. How can we shift power and produce better data?

Instead of top-down pressure, let’s invest in data from the ground up through community-engaged research.

There are hundreds of studies of HIV using community-engaged research from all over the world: research co-designed with communities not just as data-gatherers, but thought partners. I’m principal investigator of one such qualitative study in Bangladesh, Colombia, Ghana, Kenya and Vietnam, with people living with HIV, social scientists and lawyers, collaborating to study the experience of young adults with digital health.

But let me finish with an anecdote from another study that illustrates the transformative potential of community-led research – from the Caribbean.

I first visited the Eastern Caribbean in 2017 and found key populations organizations in trouble. A major donor had pulled their funding to invest it in larger countries where they could reach bigger numbers. The Caribbean groups had to pack up their laptops and ship them back to the donor. They had never had national size estimates for key populations. Overnight, they lost their programmatic data, and they were demoralized. Their own data about their own community did not belong to them.

Then Caribbean Vulnerable Communities (CVC), a regional NGO, received funding from the Global Fund through the Organization of Eastern Caribbean States (OECS) to do community-led key population size estimates in six countries. As I observed the study over three years, I

saw a transformation: the community worked with social scientists to design rigorous, innovative methods to count key populations while protecting their security; gradually, community leaders became experts, gained new authority and new funding. Government officials, communities, NGOs and researchers all formed trust, while learning together, developing a shared sense of mission.

It’s a great study, with rich results. It won the Robert Carr Research Award. But sadly, it has never been published. The six countries involved should officially publish the data so we can all learn from it.

Seye Abimbola, a leading thinker in the movement to decolonize global health, calls this principle “moral proximity”: when people have a role in producing knowledge about themselves, he says, they see how their efforts help to promote the common good: They exercise agency, gain dignity and meaning from shaping their own destiny.

Through community-led research, we can create transformative change together, in partnership with those we’ve been failing to reach – the people who really count.

Thank you.


Abimbola S. The uses of knowledge in global health. BMJ Global Health 2021;6:e005802.


Baral S, Greenall M. The data paradox. Where there is no data [blog], 7 May 2013.

UNAIDS. Key populations atlas [database].

UNAIDS. Unequal, unprepared, under threat: Why bold action against inequalities is needed to end AIDS, stop Covid-19 and prepare for future pandemics. Geneva, CH: UNAIDS. November 2021.

Waters J, Budhwani H, Hasbun J, Hearld KR. Estimation of Key Population Size of Men Who Have Sex with Men (MSM), Transgender Women and Female Sex workers in the Eastern Caribbean. Final Report, June 31st, 2018. Unpublished.

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