Lesotho high court finds imposition of death sentence solely on the basis of HIV status unconstitutional

Court decision upholds that people living with HIV have the same right to life as all others

Joint news release from the Southern Africa Litigation Centre, AIDS and Rights Alliance for Southern Africa, Lesotho Network of People Living with HIV and AIDS, HIV Legal Network and HIV Justice Network

On 25 October 2022, the High Court of Lesotho in the case of MK v Director of Public Prosecutions and Others issued a judgment on a constitutional challenge to certain sections of the Sexual Offences Act that impose mandatory HIV testing on persons accused of sexual offences, and subsequently impose a death sentence on persons convicted of sexual offences solely based on their HIV-positive status.

The case was supported by the Southern Africa Litigation Centre (SALC), AIDS and Rights Alliance for Southern Africa (ARASA), HIV Legal Network – all members of HIV JUSTICE WORLDWIDE (HJWW) Steering Committee coordinated by the HIV Justice Network (HJN) – as well as Kenya Legal & Ethical Issues Network on HIV and AIDS (KELIN). Lesotho Network of People Living with HIV and AIDS (LENEPWHA) was admitted as Amicus Curiae. The petitioner and Amicus Curiae were represented by Advocate Molati, Advocate Mokhathali, Advocate Masaeso, Advocate Mohau (K.C) and Advocate Letuka.

The petitioner challenged the constitutionality of section 32(a)(vii) of the Sexual Offences Act which appeared to impose a mandatory death sentence on people convicted of sexual offences who were HIV-positive and were aware of their status. The petitioner also challenged section 30 of the Act, which requires mandatory HIV testing for persons arrested and charged under the Act. The petitioner argued that the imposition of a mandatory death sentence solely on the grounds of HIV status, and mandatory HIV testing upon arrest, breached the constitutional rights to life, equality and non-discrimination, equal protection of the law, privacy, and dignity and that they contribute to stigma against people living with HIV.

In a judgment written by Justice Makara, the High Court, sitting as a Constitutional Court, declared that section 32(a)(vii) of the Sexual Offences Act was unconstitutional to the extent that it imposes a death sentence solely on the basis of a person’s HIV status, as this was discriminatory and amounted to inhumane treatment. The Court said that people convicted of sexual offences should be sentenced according to the mitigating or aggravating circumstances rather than HIV status alone, and that the law should be interpreted so as not to require a mandatory death sentence for a person living with HIV.

“People living with HIV have the right to life, as all people do. Imposing the death penalty based on a person’s HIV-positive status is the most extreme form of discrimination possible. We welcome the Lesotho High Court’s decision to end this terrible human rights violation.” Edwin J Bernard, HIV Justice Network, global coordinator, HIV JUSTICE WORLDWIDE.

“While recognizing the serious impact of sexual violence, the judgment is an acknowledgment that the over-broad use of criminal laws and sanctions solely based on HIV status is unjust and not justified by a scientific and human-rights based approach” Maketekete Alfred Thotolo, Executive Director, LENEPWHA.

Download the pdf of the news release here

So many harms, so little benefit: a global review of the history and harms of HIV criminalisation

Last week, The Lancet HIV published an important new advocacy resource – a global review of the history and harms of HIV criminalisation.

So many harms, so little benefit: a global review of the history and harms of HIV criminalisation was co-authored by Joanne Csete (Columbia University Mailman School of Public Health), Richard Elliott (former executive director of the HIV Legal Network and current chair of our Supervisory Board), and Edwin J Bernard (HJN’s executive director and global co-ordinator of HIV JUSTICE WORLDWIDE).

The review summarises key developments in the history of HIV criminalisation and highlights newer research – from the last decade but especially from the last five years – on the public health and human rights impact of HIV criminalisation.

It also summarises expert guidance on the subject, especially as it reflects evolving science, also noting the health and human rights concerns about the application of phylogenetic analysis for molecular surveillance data in the context of HIV criminalisation.

It also explores the impact of HIV criminalisation on different populations – women, sex workers, gay and bisexual men and other men who have sex with men, Indigenous persons, immigrants and racial minorities.

Finally, it reviews recent significant efforts to limit the impact of HIV criminalisation most of which would have been impossible without advocacy organisations of people living with HIV and their allies.

The review concludes that HIV criminalisation…

“is inconsistent with the human rights-based response to HIV espoused in UN strategies for decades. It adds to the legal and societal burden faced by those who experience discrimination based on race, class, gender, sexual orientation and immigration status as well as criminalization of other kinds. It is enabled by laws and a criminal legal system that in many cases have not caught up with the science of HIV, deploying the machinery of the criminal law as a response to conduct posing little or even no risk of transmission. It punishes people harshly even in cases where no bodily harm can be discerned and where there has been no intent to cause harm – indeed, even in some cases where people have actively sought to eliminate or reduce the risk of others acquiring the virus. It reinforces HIV-related stigma and can discourage people from seeking health services. It is a vehicle for the misuse of phylogenetic evidence and the public health apparatus of molecular surveillance.

“Any benefits of HIV criminalization, which are hard to discern from existing research, must be weighed against the enormous costs of deepening stigma and fear among people living with HIV and of incarceration, coercion and blackmail, police investigation, criminal proceedings, media hysteria, and saddling people with criminal records, sex offender status, or deportation. The myth that HIV criminalization protects women from predatory men should give way to investment in proven measures to address gender-based poverty, violence and discrimination. Financial support for the work of networks of people living with HIV in low- and middle-income countries to document HIV criminal laws and their impact would be useful.

“At a time of reckoning on race in global health, it behooves governments to review, reform and repeal laws that exacerbate the harm that centuries of White colonialism have visited upon racial minorities and Indigenous people. Significantly reducing HIV among sex workers, people who use drugs, criminalized LGBTQI persons, migrants and prisoners remains central to the Global AIDS Strategy and would be helped by eliminating HIV criminalization. And in a time of emerging infectious diseases, HIV criminalization sets a dangerous precedent. The few but dramatic cases of attempted murder charges that have been brought for alleged HIV transmission in the context of rape in South Africa were the closest precedent for attempted murder charges brought against two men who refused quarantine after having tested positive for SARS-CoV-2 in 2020. The demonization of COVID-19 “carriers” in too many countries is at least partly a shameful legacy of HIV criminalization.”

So many harms, so little benefit: a global review of the history and harms of HIV criminalisation is available for free download from The Lancet HIV until November 22 2022 by using this link.

When law and science part ways: the criminalization of breastfeeding by women living with HIV

The HIV Justice Network (HJN) has been monitoring a disturbing phenomenon — at least 12 women living with HIV have faced criminal prosecution in relation to breastfeeding or comfort nursing.

In addition, women living with HIV have been threatened with punitive public health processes and child protection interventions for breastfeeding their children in multiple countries.

To bring this important issue to the attention of women’s health experts and advocates, HJN worked with our HIV JUSTICE WORLDWIDE partners to write a paper for a Special Collection on Women’s Health and HIV for the peer-reviewed, open access journal Therapeutic Advances in Infectious Diseases.

In “When law and science part ways: the criminalization of breastfeeding by women living with HIV,” published last week, Alison Symington (HJN’s Senior Policy Analyst), Nyasha Chingore-Munazvo (Programmes Lead, AIDS and Rights Alliance of Southern Africa) and Svitlana Moroz (Chair of the Eurasian Women’s Network on AIDS) place the criminalisation of women with HIV for breastfeeding within the context of current medical recommendations and cultural views of breastfeeding. They review the criminal cases against women living with HIV for breastfeeding around the globe, examine the injustice of these prosecutions, and provide recommendations for decriminalisation.

This Special Collection includes papers addressing a wide range of health issues impacting women with HIV. According to lead author Alison Symington, “We felt it was important to submit a paper on breastfeeding and HIV criminalisation because so few people are aware of these horrible cases. Healthcare providers have an important role to play in protecting women from punitive actions and providing them with information and support so that they can make the best decisions for themselves and their children.”

To make the paper even more widely accessible, HJN has provided translations into French, Russian and Spanish.

It is HJN’s aim 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 therefore grateful to both the Elizabeth Taylor AIDS Foundation and the Robert Carr Fund for their financial support for this work.

Further resources

Mwayi’s Story is a short film about courage, and about women standing up for their rights. The film is based on a real case in Malawi and the subsequent successful advocacy to prevent an HIV criminalisation statute being passed. The full story of the woman who was prosecuted for briefly breastfeeding another woman’s baby is told in an HJN feature, It Takes More Than A Village to End HIV Criminalisation, by Sally Cameron, based on a report by Peter Gwazayani, Edna Tembo and Charity Mkona.

Why people living with HIV should not be criminalised for donating blood

Preventing the transmission of blood-borne infection by imposing limitations on the donation of blood is an important and legitimate public health objective.

Since the beginning of the HIV epidemic, certain groups – including, but not limited to, gay men and other men who have sex with men – have been subjected to restrictions on their ability to give blood.

Sustained advocacy by gay rights organisations in many high-income countries has focused on the discriminatory nature of these so-called ‘gay blood bans’, highlighting significant advances in blood screening capabilities. This has led to a general softening of restrictions on blood donations for gay men in many of these countries – allowing donations with ‘deferral periods’, or allowing donations based on individual risk assessments.

However, this advocacy has generally not translated into the removal of HIV-specific criminal laws for donating blood, nor has there been a call for a moratorium on singling out people living with HIV for donating blood using non-HIV-specific general criminal laws – even though many of the same public health and human rights arguments apply to both the so-called ‘gay blood bans’ and to HIV criminalisation more generally.

That is why today, the HIV Justice Network has published Bad Blood: Criminalisation of Blood Donations by People Living with HIV. The report was written by Elliot Hatt and edited by Edwin J Bernard, based on research undertaken by Sylvie Beaumont, with additional input provided by Sarai Chisala-Tempelhoff and Paul Kidd (HIV Justice Network’s Supervisory Board); Sean Strub (Sero Project) and Robert James (University of Sussex).

We found that 37 jurisdictions in 22 countries maintain laws that criminalise people with HIV for donating blood. Notably, 15 jurisdictions in the United States (US) have laws which specifically criminalise blood donations by people living with HIV, while four US states – California, Illinois, Iowa, and Virginia – have repealed laws which previously criminalised this conduct.

Although prosecutions are relatively rare, we are aware of at least 20 cases relating to blood donation since 1987. Half of these cases have been reported in Singapore, including two as recently as 2021.

We argue that the criminalisation of blood donations by people with HIV is a disproportionate measure – even if the aim of protecting public health through the prevention of transfusion-transmitted infection is legitimate – and is the result of both HIV-related stigma and homophobia. It is not supported by science.

There is no good reason for any country or jurisdiction to have HIV-specific criminal laws – whether they focus on blood donation or on sexual exposure or transmission. HIV-specific criminal laws are discriminatory and stigmatising, especially since people with other serious blood borne infections – including hepatitis B and C and syphilis – are not singled out with specific laws, nor for prosecution under general criminal laws.

Blood donation criminal laws focused on HIV should be repealed, prosecutions based on general laws should end, and instead science-informed measures – such as individual donor risk assessments and universal blood screening – should be relied on to protect the public against transfusion-transmitted infection.

Read the report at: https://www.hivjustice.net/publication/badblood

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.

‘Punishing vulnerability through HIV criminalization’

The HIV Justice Network recently had an editorial published in a special supplement of the American Journal of Public Health. The supplement highlights the importance of moving toward actions to reduce HIV-related intersectional stigma and discrimination.

Our editorial, ‘Punishing vulnerability through HIV criminalization’ explores the links between HIV criminalisation and other punitive laws and policies that regulate bodily autonomy, including reproduction, sexuality and gender.

What we have observed in analysing the research we undertake – when we document all the known cases of HIV criminalisation for our newsletter and then categorise them for further analysis in our Global HIV Criminalisation Database – is this:

“HIV criminalisation is not only a manifestation of state-sponsored HIV stigma but also a proxy for other forms of stigma and discrimination. Exacerbated by heavy-handed policing and vitriolic media coverage enabled by unjust laws that fly in the face of science and human rights, HIV criminalisation thrives at the intersection of social vulnerabilities.”

Although anyone living with HIV could be accused under HIV criminalisation laws or policies, the reality is that HIV criminalisation disproportionately impacts people who are either additionally criminalised, or who are otherwise mistreated by discriminatory legal systems – or both.

These include but are not limited to: sex workers; transgender people; irregular migrants; people who use drugs; gay and bisexual men; people in prison and other closed settings; unsheltered individuals; and people with disabilities, notably with mental health issues.

We also see people discriminated against on the basis of gender, race, religion, ethnicity, and/or country of birth.

That is why we not only cover HIV justice-related issues in our newsletter, but also issues relating to punitive responses to other marginalised populations and identities.

And it’s why we work with a wide range of partners in our work to achieve HIV justice.

Ending HIV criminalisation and truly achieving HIV justice requires much more than reforming or repealing HIV-specific criminal laws – even though that is a pre-requisite and each law reformed or repealed a major step forward.

But, as we conclude in the editorial,

…modernizing or repealing HIV-specific laws alone will be insufficient to address the full complexity of the intersecting stigmas behind both misguided attempts to protect people from HIV infection and intentional criminalization of groups of people (e.g., based on sexual or gender identity, sex work, or drug use). As with other manifestations of discrimination, the ultimate solution lies in equality and empowerment.

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.

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 implications” provides 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:

Take seriously and act upon community concerns about MHS.
Respect the bodily autonomy and integrity of people living with HIV in all our diversity.
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.
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.
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