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
Tags: 49th PCB Meeting
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.
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.
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.
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. https://wherethereisnodata.wordpress.com/2013/07/05/the-data-paradox/.
UNAIDS. Key populations atlas [database]. https://kpatlas.unaids.org/dashboard#/home.
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. https://www.unaids.org/en/resources/presscentre/pressreleaseandstatementarchive/2021/november/20211129_unequal-unprepared-under-threat.
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.
APCOM represented by Midnight Poonkasetwattana - NGO Asia and the Pacific
Midnight is the Executive Director of APCOM Foundation, an organization based in Bangkok, Thailand. He is also a member of various advisory committees, including the International Advisory Group of Dignity Network; Global Working Group for IDAHOBIT; World Health Organisation Global PrEP Coalition and Guidelines Development Group for HIV Testing Services; and, ASHM’s Regional Advisory Group leading on Key Populations of the Taskforce on BBVs, Sexual Health and COVID-19. In 2016, Midnight gave the Closing Plenary Statement at the 2016 High-Level Meeting on Ending AIDS at the UN General Assembly.
APCOM Foundation was established in as a non-profit organisation in 2007, working on issues affecting gay men, other men who have sex with men, and diverse SOGIESC communities in the Asia Pacific region. The organization works on areas of human rights, including health and sexual rights, and participation of communities of diverse SOGIESC in achieving sustainable development. APCOM works in partnership with governments, donors, the United Nations, development partners, and most importantly, the community and civil society organisations working to advance SOGIESC rights, and alleviate HIV in the Asia Pacific region.
Mubanga Chimumbwa is a founder/consultant for the Zambia Network of Young People Living with HIV - (ZNYP+). He is a social scientist with a background on Social Developmental Monitoring & Evaluation and SSP Data Analysis. Mubanga is experienced in project management on adolescent SRHR/HIV prevention, strategies, and policy development. His key strengths are in key population program management planning and Data Analysis using evidence-based research responses to health-related issues. Mubanga is a former board member of African Young Positives - (AY+) for the Southern Region of Africa. He has also contributed to the Global Network of Young People Living with HIV (Y+) transitional leadership and advocacy of adolescent programming youth tailored approaches. He has worked for Family Health International (FHI360) Zambia and implemented projects for USAID.
The Zambia Network of Young People Living with HIV-(ZNYP+) is a National Organization for young people living with HIV. ZNYP+ aims to improve the quality of life of young people living with HIV and those affected by pursuing support,communication, and representation on issues affecting them using community structures and youth-friendly spaces. The network supports adolescent girls and young people living with HIV in project programming and advocacy both at national and international levels in fostering HIV care and adherence to free HIV by 2030. It plays a key role in promoting community approach in reaching to Young key populations in different universities. The network has been implementing different projects for the past years through collaboration of different partners both locally and internationally.
Trans United Europe - BPOC Trans Network represented by Dinah Bons - NGO Europe
Dinah de Riquet-Bons is an LGBTQI+ /Trans lobbyist and HIV and AIDS and sex work activist. She is currently the duo chair for the bicultural trans sexworker organization, Trans United Europe. Dinah is also the chair of the European Sex Workers Rights Alliance (ESWA) and board member of the Network of Sex Work Projects (NSWP). As former the strategic director of Transgender Europe operating from Berlin, Dinah helped shape transgender rights and policies for the European Union. Her activism started in 1991 with Act UP NYC as an adolescent living with HIV in the Black, Indigenous, and People of Color LGBTIQ community. Dinah was also part of the ballroom scene for the House of XTravaganza. She started her HIV activism in Europe with HIV Vereniging Nederland, in which she was a board member. Dinah is also a 51-year old politician with BIJ 1, and she intends to run for Amsterdam city council member in the upcoming elections.
Trans United Europe is a sex worker umbrella NGO for Trans Black People of Color (BPOC) and migrants from the global south. TUEU currently has sister organizations and safe spaces in Copenhagen, Amsterdam, Hamburg, Brussels, Paris, and Barcelona. The BPOC trans organizations run important community and peer-led HIV and STI prevention programs that include HRT care by our doctors. We combine HRT care with HIV prevention including PREP and redirection to academic HIV Care centers. BPOC trans people are also active in anti-racism activism.
Eurasian Harm Reduction Association represented by Aleksey Lakhov - NGO Europe
Aleksey Lakhov has more than 15 years of experience in the area of HIV and AIDS, viral hepatitis, substance use, and harm reduction. His work experiences include being the Development Director of the largest Russian harm reduction organization "Humanitarian Action" (Saint Petersburg); General Manager of the Harm Reduction NGOs Coalition "Outreach" (Tallinn, Estonia); Steering Committee member of the Eurasian Harm Reduction Association; and World Health Organization (WHO) and United Nations Office on Drugs and Crime (UNODC) consultant. Aleksey has participated in numerous research initiatives for peer-reviewed journals on new psychoactive substances and online harm reduction. He has authored a web outreach manual for the UNODC Programme Office in Eastern Europe.
The Eurasian Harm Reduction Association (EHRA) is a non-for-profit public membership-based organization uniting 324 harm reduction activists and organizations from Central and Eastern Europe and Central Asia based in Lithuania. Its mission is to actively unite and support communities and civil society to ensure the rights, freedoms, health, and well-being of people who use psychoactive substances in the EECA region.
Transgender Law Center represented by Cecilia Chung - NGO North America
Cecilia Chung is the Senior Director of Strategic Initiatives and Evaluation at Transgender Law Center. She is a Health Commissioner of San Francisco and an internationally recognized civil rights leader in the LGBT and HIV community. Cecilia has previously served as the Co-Chair of GNP+ and is currently a member of the WHO Advisory Council of Women Living with HIV. In 2015, Cecilia founded Positively Trans, a network of transgender and nonbinary people living with HIV.
Transgender Law Center (TLC) is the largest national trans-led organization advocating for a world in which all people are free to define themselves and their futures. Grounded in legal expertise and committed to racial justice, TLC employs a variety of community-driven strategies to keep transgender and gender nonconforming people alive, thriving, and fighting for liberation.
Prevention Access Campaign represented by Christian Hui - NGO North America
Christian Hui (he/they; Undetectable) is a queer poz settler currently residing in the Dish with One Spoon Territory, Turtle Island/Toronto, Canada, and is the Senior Global Community Advisor at Prevention Access Campaign. A co-founder of two people living with HIV/AIDS networks, Ontario Positive Asians (OPA+) and the Canadian Positive People Network, Christian possesses living and professional experiences supporting and collaborating with a diverse community of people living with HIV/AIDS, including members of ethnocultural and migrant communities, 2SLGBTIQ+ people, people who use/inject drugs, people who have experienced incarceration, and people living with HIV/HCV co-infection. Christian was selected to serve as a civil society representative on the Canadian Delegation to the 2016 UN High Level Meeting on Ending AIDS, and is a Canadian Institutes of Health Research Vanier Scholar currently completing a PhD program in Policy Studies at X (Ryerson)1 University with interest in ending health inequities through the co-creation of policies with policy actors and the affected communities.
Prevention Access Campaign (PAC) is a health equity initiative to end the dual epidemics of HIV and HIV-related stigma by empowering people with and vulnerable to HIV with accurate and meaningful information about their social, sexual, and reproductive health. PAC’s Undetectable = Untransmittable (U=U), launched in early 2016 by a group of people living with HIV, is a growing global community of HIV advocates, activists, researchers, and over 1,050 Community Partners from 105 countries uniting to clarify and disseminate the revolutionary fact that people living with HIV who are on treatment and have an undetectable viral load cannot sexually transmit HIV. At PAC, we believe our collective celebration of U=U is undermined if our access to HIV diagnostics, treatment, and healthcare is not universal, and we will continue to fight for universal access for all people with HIV regardless of what barriers may exist and regardless of where they may live.
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