Advancing HIV Justice 4: new report highlights more successes, continued challenges

A new report published today (July 22nd 2022) by the HIV Justice Network (HJN) on behalf of HIV JUSTICE WORLDWIDE shows that the global movement to end HIV criminalisation continues to achieve remarkable successes, despite the many challenges that COVID-19 has brought.

Advancing HIV Justice 4: Understanding Commonalities, Seizing Opportunities provides a progress report of achievements and challenges in global advocacy against HIV criminalisation. The report generally covers a three year period ending 31 December 2021 where Advancing HIV Justice 3 ended. However, significant law reform developments that took place in the first quarter of 2022 are also included in report’s maps and analysis.

The successes

During the reporting period, four HIV criminalisation laws were repealed; another HIV criminalisation law was found to be unconstitutional; and six laws were ‘modernised’ (i.e. applied up-to-date science on HIV-related risk or harm and/or legal and human rights principles to limit the application of the law) five of which were in the United States.

In addition, we saw precedent-setting cases in four countries and policy recommendations or improvements in four further countries — all of which have the potential to limit the overly broad application of the law to people living with HIV based on HIV-positive status.

While legislative processes slowed down or stalled in some places due to COVID-19 diminishing capacity for advocacy, more HIV criminalisation laws were modernised or repealed in the United States than during any other time period, the realisation of a maturing PLHIV-led HIV decriminalisation movement that began a decade or more ago.

These outcomes were primarily due to sustained advocacy – most of it led by PLHIV networks working with allies – using a wide range of strategies. These are analysed in the report by HJN’s senior policy analyst, Alison Symington.

The challenges

However, too many HIV criminalisation cases and continued high numbers of HIV-related criminal laws continue to be of great concern, requiring more attention, co-ordinated advocacy, and funding.

Our global audit of HIV-related laws found that a total of 82 countries (111 jurisdictions) have criminal laws that are HIV-specific. Of those, we are aware of 52 jurisdictions in 35 countries that have applied their HIV-specific criminal laws.

Another 89 jurisdictions in 48 countries have applied non-HIV-specific, general criminal laws in an overly broad manner since the first prosecution in 1986.

Our case analysis shows that HIV criminalisation continues to disproportionately impact women, racial and ethnic minorities, migrants, gay men and other men who have sex with men, transgender people, and sex workers.

Although the total number of cases has diminished in some US states as well as in countries that were previously HIV criminalisation hotspots – Canada, Czech Republic, Norway, Sweden, and Zimbabwe – too many unjust prosecutions and convictions continue to be reported.

During the reporting period, we recorded 275 cases in HJN’s Global HIV Criminalisation Database. However, when we include case numbers from several Eastern European and Central Asian countries that provide official data, we estimate almost 700 criminal cases over the reporting period.

Notwithstanding the limitations of tabulating cases globally, the highest number of reported cases during the period covered by this report were in:

The report is available to download in English, French, Russian and Spanish. 

Acknowlegements

Advancing HIV Justice 4 was conceived and edited by HJN’s executive director, Edwin J Bernard, and HJN’s senior policy analyst, Alison Symington. Alison Symington researched and wrote all chapters except for ‘Global Overview’, which was researched and written by Edwin J Bernard, using data collected by Sylvie Beaumont and analysed by Tenesha Myrie.

Additional input was provided by: Gonzalo Aburto (The Sero Project), India Annamanthadoo (HIV Legal Network), Stephen Barris (Ex Aequo), Sophie Brion (International Community of Women Living with HIV), Janet Butler-McPhee (HIV Legal Network), Nyasha Chingore-Munazvo (AIDS and Rights Alliance for Southern Africa), Kenechukwu Esom (United Nations Development Programme), Elie Georges Ballan (The Joint United Nations Programme on HIV/AIDS – UNAIDS), Alfredo González (Hondureños Contra el SIDA), Julian Hows (HIV Justice Network), Deidre Johnson (Ending Criminalization of HIV and Overincarceration in Virginia Coalition), Cécile Kazatchkine (HIV Legal Network), Svitlana Moroz (Eurasian Women’s Network on AIDS), Immaculate Owomugisha Bazare (Uganda Network on Law Ethics and HIV/AIDS), Stephen Page (Nevada HIV Modernization Coalition), Cedric Pulliam (Ending Criminalization of HIV and Overincarceration in Virginia Coalition), Florence Riako Anam (Global Network of People Living with HIV), Mianko Ramaroson (The Joint United Nations Programme on HIV/AIDS – UNAIDS), Demario Richardson (Missouri HIV Justice Coalition), Sean Strub (The Sero Project), and Alexandra Volgina (Global Network of People Living with HIV).

We would especially like to acknowledge the courage and commitment of the growing number of people living with HIV and allies around the world who are challenging laws, policies and practices that inappropriately regulate and punish people living with HIV. Without them, this report — and the victories reported herein — would not have been possible.

We gratefully acknowledge the financial contribution of the Robert Carr Fund to this report.

Mwayi’s Story: a short film about courage,
women’s rights, and HIV justice

Today we are delighted to share with the world a new short film, Mwayi’s Story, produced by the HIV Justice Network on behalf of HIV JUSTICE WORLDWIDE.

Mwayi’s Story is a story about courage, and about women standing up for their rights. The film is based on the story of a woman in Malawi who was prosecuted for briefly breastfeeding another woman’s baby and the subsequent successful advocacy in Malawi to prevent an HIV criminalisation statute being passed.

Ultimately, Mwayi’s Story is about HIV justice!

We wanted to produce a film that was authentic to the lived experience of an HIV criminalisation survivor but without making her go through the trauma of having to relive the experience by telling her story again.

HJN’s video, visuals and webshows consultant, Nicholas Feustel, who produced and directed the film, said: “Since this story is primarily about mothers and children, we decided to produce the film in the style of an illustrated children’s storybook. We searched for a female illustrator working in sub-Saharan Africa and found the wonderful Phathu Nembilwi of Phathu Designs.

“For our narrator, we found Upile Chisala, a storyteller from Malawi known for her short and powerful poems.”

The script by HJN’s Senior Policy Analyst, Alison Symington, was written in consultation with our Supervisory Board member, Sarai Chisala-Tempelhoff, a Malawian human rights lawyer and legal researcher with over 15 years of experience in women’s access to justice.

We also worked with our HIV JUSTICE WORLDWIDE partners, Southern Africa Litigation Centre (SALC) and AIDS and Rights Alliance for Southern Africa (ARASA), to ensure that the film was relevant to their ongoing advocacy in the region. In fact, Mwayi’s Story had its world premiere last week on Zambia’s Diamond TV, in anticipation of a verdict in a similar breastfeeding case.

The film will be shown in a number of forums over the next few months, including at AIDS 2022. It will soon be subtitled in French, Russian and Spanish, and we are also looking for partners to translate additional subtitles if they think the film can be useful in their own advocacy. If you’re interested you can get in touch with us at breastfeeding@hivjustice.net. We will send you the English subtitle file for translation. After you return the file to us, we will upload it to YouTube.

Mwayi’s Story is part of our ongoing work to end the criminalisation of women living with HIV for breastfeeding and comfort nursing, including our Breastfeeding Defence Toolkit. It is our goal to collaborate with advocates, researchers, service providers, organisations and community members around the world to raise awareness and prevent further unjust prosecutions against women living with HIV who breastfeed or comfort nurse. We are grateful to both the Elizabeth Taylor AIDS Foundation and the Robert Carr Fund for their financial support for this work, and this film.

Our Annual Report 2021
”A Key Force for Change”

Today, with the publication of our Annual Report 2021 we look back at some of the key highlights of last year, as well as look to the future. The report is published by the HIV Justice Foundation, an independent non-profit legal entity registered in the Netherlands as Stichting HIV Justice to specifically serve as the fiscal organisation for the HIV Justice Network (HJN) and other related activities.

In 2021, we were challenged yet again by the ongoing COVID-19 pandemic which continued to impede our collective ability to organise and likely contributed to a growing acceptance of punitive approaches to public health. Nevertheless, we continued to monitor global trends and developments; develop advocacy tools and resources; brought individuals and organisations together across countries and continents to share experiences, learn, and develop strategic collaboration and campaigning; and amplified the voices of HIV criminalisation survivors and collaborated closely with other social justice movements, to ensure that HIV criminalisation remains high on global, regional and national policy and advocacy agendas.

Kevin Moody, who served as Chair of the Foundation’s Supervisory Board during 2021, said:

“HJN has once again in 2021 demonstrated its ability to impact the fight against HIV criminalisation, as outlined in the Foundation’s annual report. HJN’s technical work addressed the criminalisation of mothers with HIV who breastfeed and molecular HIV surveillance, as well having contributed to UNDP’s Guidance for Prosecutors on HIV-related criminal cases, all of which provide important support for policy makers and advocates around the world. In its convening role, HJN has been able to bring together community-based experts and allies through its flagship Beyond Blame online gathering and the HIV Justice Live! web series during a period where COVID-19 continued to preclude face-to-face meetings. Executive Director, Edwin J Bernard, and his team succeeded in continuing operations while developing a new strategic plan to shape the future of its work to curb HIV criminalisation.”

 

HJN was a co-founder and is the co-ordinator of the HIV JUSTICE WORLDWIDE (HJWW) coalition. Much of the work undertaken by HJWW has been funded by the Robert Carr Fund for civil society networks through the HIV Justice Global Consortium. Since 2019, HJN has been the lead grantee of the Consortium of seven partners: ARASA, GNP+, the HIV Legal Network, Positive Women’s Network-USA, SALC and the Sero Project. Throughout the year, we oversaw the distribution of small grants either directly or through our Consortium partners working in Eastern Europe and Central Asia (EECA), Francophone Africa, Anglophone Africa, and Latin America and Caribbean.

 

Looking to the future

In June 2021, we published our 2022-26 Strategic Plan. People living with HIV remain firmly at the heart of this strategy. All of our work is designed to contribute towards an environment in which people living with HIV feel safe, empowered and able to enjoy their human rights.

As we moved towards its implementation, we focused on three key organisational development priorities: increasing diversity within our organisation; improving our reach and strengthening our communications; and mobilising resources to support and enhance our work. Primarily supported through a grant from the Robert Carr Fund, we were also fortunate to receive funding from The Elizabeth Taylor AIDS Foundation.

The new Global AIDS Strategy 2021-2026 calls on countries to adopt bold new targets to remove “societal and legal impediments to an enabling environment for HIV services”, which includes achieving a goal of fewer than 10% of countries with “punitive laws and policies”, including those that allow for HIV criminalisation. The HIV Justice Network is ready to take on the challenge to support advocates help countries achieve these targets. That’s why we were delighted to receive news in December 2021 that two separate funding applications to the Robert Carr Fund were successful, placing us on firm footing to continue our work to end HIV criminalisation and support advocates pushing for their countries to achieve the Global AIDS Strategy goals.

Richard Elliott, who was appointed as the Foundation’s Chair in March 2022 as Kevin Moody became Treasurer said:

“In just a decade, HJN has made extraordinary contributions to the growing global movement against HIV criminalisation. Indeed, it is hard to imagine a global movement as such without HJN. The important victories against injustice show that resistance is worthwhile! Guided by a new strategic plan, input from advocates and experts from around the world, and the deep expertise and vision of our Executive Director, the HIV Justice Network will continue to be a key force for change in the years ahead.”

 

Download our Annual Report 2021

 

It’s HIV Justice Network’s 10th Anniversary

Our founding document, the Oslo Declaration, was created 10 years ago this week

On February 13, 2012, a group of individuals from civil society around the world, concerned about the inappropriate and overly broad use of the criminal law to regulate and punish people living with HIV for behaviour that in any other circumstance would be considered lawful, came together in Oslo to create the Oslo Declaration on HIV Criminalisation.

The Oslo Declaration, published on the brand new hivjustice.net website on February 22, 2012, became the founding document of the HIV Justice Network (HJN). Within weeks, more than 1700 supporters from more than 115 countries had signed up to the Declaration, creating a network of diverse activists, all fighting for HIV justice.

HJN was formed due to a growing concern over increasingly punitive approaches to HIV prevention: in particular, the inappropriate use of criminal law, even though HIV criminalisation is discredited as a public health response. We have grown in size, capacity, and impact in the intervening decade thanks to our funders – the Monument Trust, the Robert Carr Fund for civil society networks, the Elizabeth Taylor AIDS Foundation and UNAIDS – our small-but-dedicated HJN team, our Supervisory Board, our Global Advisory Panel and our HIV JUSTICE WORLDWIDE partners.

Today, we collate authoritative data and information to build the evidence base against the unjust criminalisation of people living with HIV. We also raise awareness of the harms of this approach in critical arenas including among the scientific, medical, policy, advocacy, and donor communities.

Most importantly, we galvanise and nurture the global movement against HIV criminalisation, by providing an advocacy hub to bring individuals, national, regional, and global networks and organisations together to catalyse change.

Thank you to everyone who has supported the organisation on our journey so far. We couldn’t have done it without our funders and partners but, most importantly, we wouldn’t have achieved so much without the courage and commitment of the growing number of advocates around the world who are challenging laws, policies and practices that inappropriately regulate and punish people living with HIV.

Watch HIV Justice Live! which explores the history behind, and impact of, the Oslo Declaration on HIV Criminalisation. Hosted by HJN’s founder and Executive Director, Edwin J Bernard, the show, From Moment to Movement, featured some of the advocates who were behind the Oslo Declaration: Kim Fangen, Patrick Eba, Michaela Clayton, Ralf Jürgens and Susan Timberlake.

 

Help us support you
by completing a short survey on e-Learning and e-Training

Please complete our short survey on e-Learning and e-Training by 11th February

 

You’ll have seen from our first HIV Justice Newsletter of the year that we are excited about various advocacy tools and resources we are working on this year, including our new e-Learning and e-Training platform, to allow for digital organising and advocacy to continue regardless of travel and in-person meeting limitations, making these resources more accessible to more people.

The platform will be used to continue to build and galvanise the global movement to end punitive laws and policies that impact people living with HIV in all their diversity, with a specific focus on the criminalisation of HIV non-disclosure, exposure and/or transmission (HIV criminalisation).

With its accessible online written and video resources, and different types of learning and training sessions, and content in English, French, Russian, and Spanish, the platform will engage a growing community of HIV justice activists and advocates. It will provide timely and accessible education and training that focuses on understanding the issues, to help achieve progressive change in legal and policy environments for people living with HIV at national, regional, and international levels.

To help us ensure we properly achieve these objectives, we want to hear from you – to understand what you would find most useful in an e-Learning platform, and to find out more about your experiences of using e-Learning. So, could you complete this short survey (10-15 minutes) by 11 February 2022.  We’d love to hear from you.

Visit https://www.surveymonkey.com/r/hivjustice to answer the survey (in English, French, Russian or Spanish) or scan the QR code below.

2021 in review: more successes, more challenges, much more to do

This past year we’ve been challenged yet again due to the COVID-19 pandemic. As well as the impact on each of us, personally, the legal and policy decisions relating to its control – and their enforcement –  have significantly impacted people living with HIV who are already criminalised or otherwise marginalised, which we have been continuing to highlight in our HIV Justice Weekly newsletter.

And as COVID-19 continues to dominate not only policymaking and law enforcement activities, but also media headlines, it seems very likely that relying primarily on media reports to document unjust cases of HIV criminalisation underestimates how many people are affected.

This past year we documented 54 media reports of unjust HIV criminalisation cases in 20 countries. This compares to 91 cases in 25 countries last year, which was still fewer than reported in previous years.

Although this could be seen as a cause for celebration, I fear that the reason we are seeing fewer media reports is not because of fewer cases, but because the media is distracted by COVID-19 and just isn’t reporting on them. For example, we only recorded one media report of a horribly unjust case in Belarus in January 2021 but on World AIDS Day 2021 the official Telegram account of Investigative Committee of Belarus reported that there had actually been 34 HIV-related criminal cases in 2021.

After Belarus, the highest number of case reports came from Russia, where it was also reported that over the past five years, Russian courts have acquitted only one defendant under its problematic HIV-specific criminal law. The United States, Canada and France make up the rest of the top five. Alarmingly, women living with HIV were accused in 33% of all reported cases in 2021, up from 25% last year.

We will be providing a much more detailed analysis of laws and cases – and the remarkable advocacy successes and achievements – in the next edition of our Advancing HIV Justice progress report, covering January 2019 – December 2021, which we plan to publish by the end of the first quarter of next year.

Despite the impact of COVID-19 on our ability to organise – and a growing acceptance of punitive approaches to a public health issue – this year we’ve also seen some remarkable advocacy in the global movement to end HIV criminalisation, none more so than across the United States.

In March, both Georgia and Virginia modernised their HIV criminalisation laws and in June and July Nevada and Missouri did the same. And in July Illinois completely repealed its outdated and unjust HIV-specific criminal law, becoming only the second US state ever to do so.  In October, New Jersey’s Acting Attorney General issued science-informed prosecutorial guidance to limit the overly broad application of its HIV criminalisation law, and in December, on World AIDS Day, President Biden became the first-ever government leader to speak out against HIV criminalisation laws whilst in office. The year ended on a high with proposals to modernise HIV criminalisation laws in Florida and on a federal level.

The remarkable successes in the United States didn’t happen overnight – the movement to end HIV criminalisation has been nurtured – and increasingly better funded – for more than a decade. This is why our focus has turned to other parts of the world – notably Eastern Europe and Central Asia, sub-Saharan Africa, Latin America and the Caribbean – where many challenges remain.

In May, a new parliamentary bill in Ukraine proposed expanding its already problematic HIV-specific criminal law with harsher sentences for transmitting all serious communicable diseases, and Uganda passed a new Sexual Offences Bill with horrendous implications for people living with HIV, gay men and sex workers. Fortunately, neither have been enacted into law, yet.

We also saw advocacy successes in these regions, too.  In Uganda, after five years of waiting, the Constitutional Court of Uganda has finally begun to hear a landmark case challenging the overly broad and draconian provisions of its HIV and AIDS Prevention and Control Act. In Mexico, the ‘danger of contagion’ law used by many Mexican states to prosecute people living with HIV was found to be unconstitutional by a court in the federal district of Mexico City, with proposals for its full repeal presented in November. Also in November, the Committee on the Elimination of Discrimination against Women (CEDAW) recommended the removal of Kyrgyzstan’s HIV-specific criminal law, thanks to a powerful shadow report by our HIV JUSTICE WORLDWIDE partners, the Eurasian Women’s Network on AIDS.

There is still so much more to do, however.  That’s why, for example, we produced a brand-new section of our HIV Justice Toolkit specifically to help defend people living with HIV who are prosecuted for breastfeeding, chest feeding or comfort nursing, and why HIV JUSTICE WORLDWIDE launched a briefing paper and video in October to help advocates understand the complexities – and consequences – of molecular HIV surveillance.

Despite these successes, as well as the many milestones the HIV JUSTICE WORLDWIDE movement has achieved since its launch in 2016, we will not rest until everyone living with HIV in all their diversity is treated equally, fairly, and justly by all actors of the criminal legal and public health systems.

New Breastfeeding Defence Toolkit
launched at Beyond Blame 2021

Criminal prosecutions related to presumed HIV exposure via breastfeeding are all-too-often driven by stigma, misinformation, and the desire to protect a child from exaggerated risk.  People living with HIV require a vigorous defence based on principles of justice and human rights, good public policy, and accurate science.

Which is why this week we have launched the Breastfeeding Defence Toolkit as a new section of our HIV Justice Tookit.

The Breastfeeding Defence Toolkit provides materials to support lawyers and advocates supporting people living with HIV who face criminal charges or other punitive measures for breastfeeding, chestfeeding, or comfort nursing.

Although the Breastfeeding Defence Toolkit is currently only available in English, we are working on French, Russian and Spanish versions.  In addition, new resources will be added to the Toolkit as they become available.

The Breastfeeding Defence Toolkit was launched at Beyond Blame: Challenging Criminalisation for HIV JUSTICE WORLDWIDE on Tuesday 30 November 2021.  Watch the 10 minute segment below.

Background

In 1986, it was discovered that HIV could be transmitted from a woman to a child through 
breastfeeding. Since this time, women living with HIV have borne the weight of the 
responsibility of preventing HIV transmission to their offspring. This responsibility has been 
used to justify surveillance, judgement, and limitations on autonomy and decision-making for 
women living with HIV.

Some women living with HIV have faced criminal prosecution for exposing fetuses and/or 
infants to a risk of HIV infection, especially through breastfeeding. These numbers may be small 
compared to the number who have faced criminal charges with respect to HIV non-disclosure, 
exposure and transmission in sexual contexts, but cases are increasing.

The HIV Justice Network 
is aware of at least 13 such cases in the past decade, with a growing number of criminal prosecutions taking place 
across the African continent as well as in Russia since 2018. We are also aware of several cases 
that took place in North America and Europe between 2005 – 2012.

These cases include charges laid against mothers, community members and domestic 
employees. Various criminal charges have been used in these cases, including failure to provide 
the necessaries of life, grievous bodily harm, unlawfully doing an act likely to spread a 
dangerous disease, and deliberately infecting another with HIV.

In addition to these criminal 
cases, many more women have experienced punitive responses from service providers, public 
health, and child welfare authorities.

Criminal prosecutions and other punitive responses to breastfeeding by women living with HIV 
pose significant harms to both the accused and the child. HIV criminalisation threatens the 
health and well-being of people living with HIV and jeopardises the goals of ending HIV 
discrimination and, ultimately, the epidemic. Not only do punitive laws targeting people living with HIV lack a scientific evidence base they also serve as barriers to HIV prevention, treatment, 
and care, and perpetuate stigma.

Infant feeding choices should not be a criminal issue. Parents should be provided with full 
information to make the best choices for their families and infant feeding should be managed 
through clinical support. Science supports that the best outcomes for a mother and a child 
result from proper medical care, access to treatment and openness. Criminalising maternal and 
child health issues generally risks worse outcomes for the infant.

UPDATE: Speakers now confirmed for #BeyondBlame2021!

REGISTER HERE

Beyond Blame, our flagship meeting for activists, human rights defenders, criminal legal system and public health system actors, healthcare professionals, researchers, and anyone else working to end HIV criminalisation, is returning for a special eve-of-World AIDS Day edition.

Following the success of last year’s Beyond Blame @ HIV2020, which was reimagined as a two-hour web show, the HIV JUSTICE WORLDWIDE coalition is delighted to announce that Beyond Blame: Challenging Criminalisation for HIV JUSTICE WORLDWIDE will take place on Tuesday, November 30, 2021, from 6-8 PM Central European Time. Check this link to find the event in your local time.

REGISTER HERE

Beyond Blame is a unique opportunity to learn why HIV criminalisation matters, as well as hear about the wide range of initiatives and strategies that have been used by activists, lawyers, networks, and organisations around the world to work towards ending the inappropriate use of criminal law to regulate and punish people living with HIV.

We will be highlighting some of the successes and challenges of the global movement to end HIV criminalisation over the past year, including work on ending the criminalisation of women living with HIV for breastfeeding, exploring whether scientific advances, such as the prevention benefit of treatment (U=U) and Molecular HIV Surveillance, help or hinder our movement and much, much more.

Beyond Blame will take place in English, with interpretation available in French, Russian and Spanish.

Follow the conversation on Twitter via #BeyondBlame2021 #HIVJustice

REGISTER HERE

Molecular HIV Surveillance “a perfect storm” in the context of HIV-related criminalisation

A new briefing paper published today by Positive Women’s Network-USA on behalf of the HIV JUSTICE WORLDWIDE coalition aims to support people living with HIV, activists, legal experts, and human rights campaigners in understanding the complexities and consequences of molecular HIV surveillance (MHS). 

Molecular HIV Surveillance: A global review of human rights implicationsprovides a detailed explanation of what MHS is and how it is used across the globe, including how the technology works, where it is being conducted, and by whom. The paper describes growing human rights concerns relating to the use of this technology and goes on to list a number of recommendations for the use of MHS which were gathered from an international literature review and from members of the Expert Advisory Group.*

Molecular HIV surveillance (MHS) is an umbrella term that describes a wide range of practices focused on the monitoring of HIV variants and the differences and similarities between them for scientific research, public health surveillance, and intervention.

To conduct MHS, scientists rely on the results of HIV genetic sequencing tests taken from people living with HIV – these tests are often done before prescribing HIV medication to determine if the individual has a strain of HIV that is resistant to certain treatments. Interest in, and use of, MHS for reasons other than tailoring treatment regimens is increasing globally, however. Of particular concern, in some regions, MHS is being conducted and HIV data is being shared in ways that put the rights and safety of people living with HIV in jeopardy. 

“HIV is highly stigmatised and communities that are most vulnerable to acquiring HIV are already highly policed and at risk for violence” said Naina Khanna, co-executive director of Positive Women’s Network-USA, a US-based membership organisation led by women and people of transgender experience living with HIV. “In more than 30 states in the US alone, and over 100 countries around the world, people with HIV can be criminalised on the basis of their health condition. Taking this kind of data from people without their consent or knowledge and storing or sharing it without adequate protections is extremely risky and could come at the cost of someone’s personal safety, their livelihood, and in the case of HIV criminalisation, their freedom.”

The paper highlights how HIV experts and advocates have raised a range of human rights concerns about this technology. These include: 

  • Consent and autonomy; 
  • Lack of community consultation; 
  • Increased stigma on targeted communities; 
  • Privacy and data protections; 
  • Whether or not the technology can be used to “prove” direct transmission; and,
  •  How MHS may intensify HIV criminalisation within communities who are already marginalised and oppressed.

Edwin J Bernard, Executive Director of the HIV Justice Network and global co-ordinator of the HIV JUSTICE WORLDWIDE coalition added: “MHS treats people living with HIV as ‘clusters’ and targets of public health interventions, rather than the beneficiaries of public health. When you combine MHS with HIV criminalisation it’s a perfect storm. That’s why I commissioned PWN-USA to produce this briefing paper as a first step to understand the problems and to suggest a range of possible solutions. With increased knowledge on the practices of MHS, individuals and organisations can be better equipped to advocate for ending research and surveillance practices that have the potential to harm the rights, autonomy, and well-being of people living with HIV.”

The paper provides wide-ranging recommendations for change aimed at various stakeholders, highlighting five key areas of action:

  1.   Take seriously and act upon community concerns about MHS.
  2.   Respect the bodily autonomy and integrity of people living with HIV in all our diversity.
  3.   MHS implementers must demonstrate a clear public health benefit that outweighs the potential harms of MHS, including by ensuring protections (i.e., data privacy, legal protections, social harms prevention, etc). These demonstrated benefits of MHS must measurably include people living with HIV.
  4.   Providers ordering HIV sequencing must inform people living with HIV about how their blood and data are being used for MHS purposes and be allowed to withdraw the consent if they so wish, without fear of negative consequences to their HIV treatment and care.
  5.   Implementers of MHS should publicly advocate against punitive or coercive laws and policies aimed at people living with HIV and ensure that MHS is never used in criminal, civil, or immigration investigations or prosecutions.

The paper is now available in four languages:

Watch the launch video below:

Follow the online conversation on Twitter by using the hashtags #EndMHS #DataPrivacy #DataProtection #HIVJustice and by following @HIVJusticeNet @uspwn

We gratefully acknowledge the financial contribution of the Robert Carr Fund to this report.

*MHS Expert Advisory Group

  • Naina Khanna & Breanna Diaz, Positive Women’s Network-USA
  • Edwin J. Bernard, HIV Justice Network
  • Marco Castro-Bojorquez, HIV Racial Justice Now (in memoriam)
  • Brian Minalga, Legacy Project
  • Andrew Spieldenner, US People Living with HIV Caucus
  • Sean Strub, Sero Project

WATCH HIV Justice Live! (Ep 4): How to advocate for prosecutorial guidance for HIV-related cases

The fourth episode of HIV Justice Network’s web show, HIV Justice Live! that streamed live on July 14 is now available to watch on YouTube.  The episode, which our colleagues at the HIV Legal Network called a master class in advocacy” discussed the newly launched UNDP’s Guidance for Prosecutors on HIV-related criminal cases and provided insights into how to work with prosecutorial authorities so that they have a clear understanding of how to – and more importantly how not to – use HIV criminalisation laws.

Guidance like this is a good example of a ‘harm reduction’ approach if you can’t change or repeal HIV criminalisation laws, and adopting such guidance can result in fewer miscarriages of justice, as well as improve the criminal legal system’s understand of, and approach to, people living with HIV.  Once implemented it’s also a good way of holding prosecutors to account.

The Guidance was developed for UNDP by our HIV JUSTICE WORLDWIDE colleagues, Richard Elliott and Cécile Kazatchkine of the HIV Legal Network. The process, which took two years, involved multiple consultations. Several other colleagues, including HJN’s Executive Director Edwin J Bernard, HJN Supervisory Board member Lisa Power, and HJN Global Advisory Panel member Edwin Cameron were part of the Project Advisory Committee.

The episode, hosted by Edwin J Bernard and featuring UNDP’s Kene Esom alongside Lisa Power and Richard Elliott, also included a special edit of HJN’s documentary, Doing HIV Justice, which demystifies the process of how civil society worked with the Crown Prosecution Service of England and Wales to create the world’s first policy and guidance for prosecuting the reckless or intentional transmission of sexual infection.

The full-length, 30-minute version of this documentary is now available as part of a YouTube playlist that also features two other educational and informative videos: an introduction by the CPS’s Arwel Jones with some useful tips about how to engage with prosecutors, and a workshop that took place after the world premiere screening in Berlin, featuring Lisa Power and Catherine Murphy (who helped advocate for the implementation of guidance in England & Wales, and Scotland, respectively) as well as former UNAIDS Senior Human Rights and Law Adviser, Susan Timberlake.