Transgender Day of Visibility 2023

Honouring the courage of transgender people globally, especially transgender people living with HIV

Today is International Transgender Day of Visibility, held annually on 31st March to celebrate transgender people globally and honour their courage and visibility to live openly and authentically.

This year’s 14th annual celebration is a day to also raise awareness around the stigma, discrimination and criminalisation that transgender people face.

According to the Human Dignity Trust, 14 countries currently criminalise the gender identity and/or expression of transgender people, using so-called ‘cross-dressing’, ‘impersonation’ and ‘disguise’ laws. In many more countries transgender people are targeted by a range of laws that criminalise same-sex activity and vagrancy, hooliganism and public order offences.

Transgender people living with HIV can be further criminalised based on their HIV-positive status, although we know that there are still too many invisibilities around the impact of HIV criminalisation on transgender people.

Cecilia Chung, Senior Director of Strategic Initiatives and Evaluation of the Transgender Law Center, who is also a member of our Global Advisory Panel told our 2020 Beyond Blame webinar that there are not enough data on the impact of HIV criminalisation laws on transgender people. She said such data are not “uniformly collected across the world… The numbers still remain invisible even though we know for sure there are [HIV criminalisation] cases.”

HJN honours the courage of transgender people – especially transgender people living with HIV – to live openly and authentically. We also call for more visibility for transgender people in data collection, as well as reforms of all criminal laws and their enforcement that disproportionately target transgender people.

On Zero Discrimination Day:
law reform is not easy, but it’s possible

Today, on On Zero Discrimination Day, HJN was delighted to participate in a webinar — co-hosted with the Global Partnership to end HIV-related Stigma and Discrimination and the Not A Criminal Campaign — that explored how law reform is possible.

You can watch the entire webinar here: https://fb.watch/i-79fP5bYV/

I was asked to provide some closing remarks.  As we were running late, I had to cut some of my prepared remarks, which are included here in square brackets [ ].  Here they are in full.

We all know decriminalisation is possible. But it’s not easy.  Still, it can and does happen. 

It can happen thanks to the strong commitment of the three most important pillars that make change possible:
  • It starts with community leadership
  • It ends with government commitment and political will
  • And it happens with the support of the broader UN family (co-ordinated by UNAIDS) working closely with partners like the Global Fund and PEPFAR. 
This is why the Global Partnership is the ideal mechanism to cement those three pillars together.
 
But what does it actually take to change laws?  Successful strategic litigation or law reform doesn’t happen in a vacuum. That means not only funding the legal or human rights organisations challenging the laws, but also (a non-exhaustive list):
  • Funding the communities impacted by those laws, supporting people to know their rights;
  • Funding the community-based paralegals to help frightened and vulnerable people navigate the harsh realities of criminal legal system;
  • Funding community-based organisations to monitor rights violations, produce shadow reports, and document the evidence of the harms of criminalisation;
  • Funding community-led training and sensitisation of police, prosecutors and judges, and law-and policy-makers;  and
  • Funding the community-based  organisations supporting and co-ordinating the work regionally and globally, creating tools for challenge including working with the media where so much of the stigma created by these harmful laws is perpetuated, but can be also where hearts and minds can be changed.
So it takes a (global) village. 
 
And time – which we don’t have much of if we are to reach those ambitious 10-10-10 targets by 2025, or 2030. 
 
And money – which we never seem to have enough of. 
 
But it is possible, and it can happen. 
 
We’ve heard today about various forms of decriminalisation.  And you all saw the map that Tinashe shared earlier showing that HIV criminalisation laws have been reformed or repealed in 15 countries over the past decade, but there’s still another 129 countries to go!
 
And although we didn’t get to hear today from our colleagues working with people who use drugs, and in drug policy, over 30 countries around the world have adopted legal reforms to remove the criminalisation of certain activities related to drug use.
 
But we also heard about the many challenges that remain.
 
Yesterday was the 2nd ‘HIV is not a crime day‘ in the US. It was fantastic to see so many activities and events raise awareness of an issue that is so close to my heart and which for too long has been underfunded and overlooked. In fact yesterday Funders Concerned About AIDS highlighted that in 2020 only around 0.5% of all philanthropic funding supported HIV decriminalisation work globally.  Today, the HIV Justice Network and the HIV JUSTICE WORLDWIDE coalition is grateful to the Robert Carr Fund for civil society networks, to allow us to ensure that the message that ‘HIV is not a crime’ is heard, understood, and acted upon globally.  But this work, like all decriminalisation work, needs more resources.
 
[This work is sometimes really hard and sometimes doesn’t always lead to success – at least the first time around. Despite the best efforts of our colleagues at KELIN and UGANET, we were disappointed to learn at the end of 2022 that constitutional challenges to Kenya’s and Uganda’s HIV-specific criminal laws were unsuccessful. Nevertheless, both will appeal these retrograde rulings, because they – and we – are on the right side of history. After all, Zimbabwe repealed their HIV-specific criminal law last year following years of advocacy following unsuccessful strategic litigation.
 
We know that HIV criminalisation mostly serves as a proxy for other kinds of discrimination – discrimination based on class, ethnicity, gender identity, migrant status, race, sex, sexual orientation, and other potential markers of social vulnerability.
 
And we know that most aggressive push to criminalise people living with HIV tends to occur at the intersection of several stigmatised or criminalised identities.
 
And so we firmly believe that this work must be intersectional and collaborative.]
 
We also know that decriminalisation alone will not address the full complexity of the intersecting stigmas behind these laws and their enforcement. As with other manifestations of discrimination, the ultimate solution lies in equality and empowerment. This is a marathon, not a sprint, and dismantling systems that have been built over decades and that oppress people living with HIV and key populations takes time.
 
We heard today from the South African Deputy Minister of Justice about the Sex Work Decriminalisation Bill.  We, and many others in our global network have written letters of support to the South African government welcoming this change.  This Friday, 3rd March, is International Sex Workers Rights Day. Let’s make sure South Africa knows the world is watching and that South African sex workers  know we have their back.
 
HIV is not a crime, and sex work shouldn’t be a crime, either!
 
Let’s use our collective power across all social media and and on #ZeroDiscrimination Day use the hashtags  #SexWorkIsWork and #HIVIsNotACrime.

Celebrating love and advocacy this Valentine’s Day

February is not only the month of love, it is also the anniversary of the establishment of the HIV Justice Network through our founding document, the Oslo Declaration on HIV Criminalisation.

It’s only appropriate, then, to celebrate both love and advocacy this Valentine’s Day.

Given the difficulty that some people living with HIV can face when it comes to finding love, including negotiating disclosure, as well as sex for pleasure, work, and/or creating a family in the context of HIV criminalisation, it is important to acknowledge that everyone is deserving of love and affirmation.

Love is also about respect for our autonomy, and so this Valentine’s Day we also need to stand up against public health officials taking and sharing data by using our blood without consent.

This year the HIV Justice Network is supporting two Valentine’s Day campaigns for and about people living with HIV, led by women living with HIV.

#LovePositiveWomen Campaign

The Love Positive Women campaign, developed and led by women living with HIV, is a global initiative running every Feb Feb 1st-14th for each of us to express and share our love and support for all women living with HIV.

The campaign uses social media to link local grassroots gestures of love to each other. Using Valentine’s Day as a backdrop, Love Positive Women “creates a platform for individuals and communities to engage in public and private acts of love and caring for women living with HIV.”

Going beyond romantic love to deep community love and social justice, the campaign is also a call to action. The HIV Justice Network has been supporting this campaign since 2017.

Follow the conversation using #LovePositiveWomen on social media.

#EndMHS Campaign

This Valentine’s Day, Positive Women’s Network-USA is spearheading a US-focused campaign tweeting at the US Centers for Disease Control (CDC) with messages full of tough love and snark about ending molecular HIV surveillance (MHS).

Molecular HIV surveillance and cluster detection and response (MHS-CDR) is one of four pillars of the US Ending the Epidemic Initiative. PWN-USA and many other organisations working on the rights of people living with HIV, including the HIV JUSTICE WORLDWIDE coalition, have serious concerns about using personal medical information – including our blood – for surveillance purposes without meaningfully involving people living with HIV, without informed consent, and often even without our knowledge.

HIV surveillance and HIV criminalisation collide to put the human rights of people living with HIV at risk and can be especially dangerous for Black and Brown people, migrants, sex workers, transgender women, and other communities that are hyper-policed and over-surveilled.

Recently, the Presidential Advisory Council on HIV/AIDS (PACHA) unanimously passed an historic resolution that responds to these concerns, and urges the CDC to change their guidance on MHS-CDR activities.

Tell the CDC that they must implement the PACHA resolution by using the social media toolkit and the hashtags #ILoveConsent #MyBodyMyData #CommunitiesNotClusters #EndMHS

 

Watch HIV Justice Live! which explores the history behind, and impact of our founding document, 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.

 

 

 

2022 in review: A turning point for HIV justice?

Looking back on all that happened in 2022, we are cautiously optimistic that 2022 will be seen as a turning point in the global movement to end HIV criminalisation. We celebrated promising developments in case law, law reform and policy in many countries and jurisdictions over the past year, building on the momentum of 2021. Although there is much more work yet to do, it’s clear that progress is being made — thanks primarily to the leadership of people living with HIV.

Continuing a trend that began two years ago, overall there seems to have been a decline in the number of HIV-related prosecutions. This year we identified media reports of 49 new HIV criminalisation cases in 16 countries plus seven US states. This compares to 54 new cases in 20 countries last year (which was still fewer than reported in previous years). This year, the highest number of case reports came from Russia, followed by the United States (with multiple cases in the state of Florida), and France. 

It is possible that we are seeing fewer media reports because there are actually fewer cases, but we must always consider these known cases to be illustrative of what is likely a more widespread, poorly documented use of criminal law against people living with HIV. The media, public health authorities and law enforcement may still be distracted by the global financial crisis precipitated by Russia’s invasion of Ukraine and the impact of COVID-19 — a pandemic that continues to disproportionately impact people living with HIV.

After being near the top in previous years, Belarus has been bumped off the ‘most cases’ list. Last year, the Belarus Investigative Committee reported 34 new HIV-related criminal cases. It’s highly likely that this year there were some (unreported) cases, but it’s also clear that the number of cases has been slowing down since 2020, possibly due to ongoing discussions with the government to limit the use of the criminal law.

Canada used to be a global leader in HIV criminalisation, but no new cases were reported this year. In fact, the only case reports from Canada were about the overturning of a conviction by the Ontario Court of Appeal after it accepted there was no realistic possibility of transmission as the accused woman had an undetectable viral load, and another Ontario Court of Appeal acquittal based on the accused man’s elite controller status. These positive rulings follow many years of sustained advocacy, which has also led to the federal government opening a public consultation on reforming the criminal law. The Canadian Coalition to Reform HIV Criminalization has welcomed this consultation as a first step to concrete action on law reform.

Earlier this year, Taiwan’s Supreme Court also recognised the prevention benefit of treatment by upholding the acquittal of a man with an undetectable viral load who was accused of alleged HIV exposure. But elsewhere in Asia, Singapore continues to unjustly prosecute gay men living with HIV under draconian laws, despite being celebrated for recently repealing their colonial-era law that criminalised sex between men. Singapore is also the world leader in prosecuting gay men for not disclosing a possible HIV risk before donating blood. That’s why we issued our Bad Blood report in September, which concludes that the criminalisation of blood donations by people with HIV is a disproportionate measure — the result of both HIV-related stigma and homophobia, and not supported by science.

In the United States, we continued to see a reduction in the number of states with HIV-specific criminal laws thanks to the ongoing advocacy by networks of people living with HIV supported by human rights and public health organisations. In 2022, Georgia modernised its law and New Jersey became the third US state to fully repeal its HIV-specific criminal law. President Biden again highlighted HIV criminalisation in his World AIDS Day proclamation stating that “outdated laws have no basis in science, and they serve to discourage testing and further marginalize HIV-positive people.” In October, the Presidential Advisory Council on HIV/AIDS unanimously passed an historic resolution on molecular HIV surveillance that will be critical to protecting the human rights and dignity of people living with HIV. But problematic new laws continue to be enacted despite strong opposition from civil society. In November, Pennsylvania’s Governor, Tom Wolf, signed into law an overly broad, unscientific statute that makes it a felony to pass on a communicable disease, including HIV, when someone “should have known” they had the disease.

There was also mixed news from the African continent. In March, Zimbabwe became the second African country to repeal its HIV-specific law (the Democratic Republic of Congo repealed its law in 2018). This victory is testament to the effectiveness of a multi-year, multi-stakeholder campaign that began with civil society advocates sensitising communities and parliamentarians, notably the Honourable Dr Ruth Labode, Chairperson of Parliamentary Portfolio Committee on Health and Child Care. She began pushing for a change in the law in 2018, having previously been in favour of the provision which she thought protected her female constituents. And in October, the Central African Republic also enacted a new HIV law that focused primarily on social protections for people living with HIV, without any criminalising provisions.

Also in October, the Lesotho High Court issued a positive judgment following a constitutional challenge to sections of the Sexual Offences Act that impose a mandatory death sentence on persons convicted of sexual offences if they were living with HIV.  Following interventions from members of the HIV JUSTICE WORLDWIDE coalition and others, the Court ruled that people living with HIV have the same right to life as all others — and commuted the sentence.

The news elsewhere on the continent, however, wasn’t so positive. After six years of waiting, a constitutional challenge to some of the most problematic, criminalising sections of Uganda’s HIV/AIDS Prevention and Control Act was dismissed outright in November. We are anxiously awaiting the ruling in a similar challenge in neighbouring Kenya. It was filed five years ago and has since been postponed several times. This year, we also lost Ugandan nurse and HIV criminalisation survivor, Rosemary Namubiru, who was a posthumous recipient of the Elizabeth Taylor Legacy Award at this year’s International AIDS Conference.

Women — who were accused in around 25% of all newly reported cases this year — also face criminal prosecution in relation to breastfeeding or comfort nursing, mostly across the African continent. In addition, women living with HIV continue to be threatened with punitive public health processes and child protection interventions for breastfeeding their children in multiple countries. That’s why this year we created the short film, Mwayi’s Story, to highlight the injustice and facilitate discussion about HIV and breastfeeding. We also worked with our HIV JUSTICE WORLDWIDE coalition partners to publish a paper in the peer-reviewed, open access journal Therapeutic Advances in Infectious Diseases to highlight these problematic and unjust approaches to women with HIV who breastfeed or comfort nurse.

This year, we learned from the Eurasian Women’s Network on AIDS, working with the Global Network of People Living with HIV, about how women living with HIV are both disproportionately impacted by HIV criminalisation across the Eastern Europe and Central Asia (EECA) region and also leaders in research, advocacy and activism against it. Their report illustrates how HIV criminalisation and gender inequality are intimately and inextricably linked. Case studies include a woman in Russia who was prosecuted for breastfeeding her baby and several women in Russia who were blackmailed by former partners who threatened to report them for alleged HIV exposure as a way to control, coerce, or abuse them.

The disproportionate impact of HIV criminalisation on women was also the focus of a World AIDS Day statement by the Organization of American States (OAS) calling on Member States to end HIV criminalisation. Earlier in the year, Argentina had enacted a new, comprehensive and non-punitive HIV, STI and TB law. 

Nevertheless, there is still so much more to do to reach the global target of fewer than 10% of countries with punitive laws and policies that negatively impact the HIV response. To keep up the momentum, we continued to produce reports and analysis — including our flagship Advancing HIV Justice 4: Understanding Commonalities, Seizing Opportunities — as well as contributed to peer-reviewed journal articles, such as So many harms, so little benefit in the Lancet HIV and Punishing vulnerability through HIV criminalization in the American Journal of Public Health. We’re also doing our best to ensure we change the media narrative on HIV criminalisation, including by contributing to The Guardian’s World AIDS Day podcast on HIV criminalisation.

Our greatest achievement this year was the creation of the HIV Justice Academy. We are very proud of this online platform for e-learning and training which we believe will be a catalyst in building the wider movement to end punitive laws and policies that impact people living with HIV in all their diversity. Already available in English and French, we’ll be launching in Spanish and Russian early next year.

Did we turn the corner in 2022? Only time will tell, but if there is one thing we know for sure it is that changing hearts and minds with respect to HIV criminalisation is a long road with many ups and downs along the way. We know that important progress was made in 2022 and that we begin 2023 with fresh analysis, new tools and a renewed spirit of solidarity.

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.

Commentary: An International Pandemic Treaty Should Centre on Human Rights

Published on 10 May 2021 in: The BMJ

 

The proposed International Pandemic Treaty could be undermined by political posturing and national protectionism—or it could be an opportunity to chart a different global future based on human rights. Those in charge of drafting the treaty must begin with a clear look at the grave abuses that have characterized the COVID-19 pandemic: authoritarian power grabs; continuing monopolies in diagnostics, therapeutics, and vaccines; failure to resource health systems; staggering setbacks for women; and an upsurge in violence, including covid-related hate crimes. Poorer and marginalized communities have borne the heaviest burden of policing; unemployment; and lack of food, health services, and security.

States have all-too-easily sidelined the international human rights framework under cover of emergency responses. This cannot continue. Any treaty should address these key issues:

The right to health—Most of the world lacks COVID-19 diagnostics, medicines, and vaccines. A new treaty should uphold the right to physical and mental health, and acknowledge the right of everyone to the benefits of scientific progress and its applications, including through intellectual property waivers. 

An end to weaponizing pandemics—Any new treaty should protect individuals from threat of criminal sanctions linked to infection and reaffirm the Siracusa Principles, which set out clear limits on restrictions of rights during an emergency.

Workers’ rights are human rights—Workers who gave the most in 2020 were protected the least. States should ensure the physical security of health care workers, community health workers and other essential workers, and respect their right to form and join trade unions. Informal sector workers should have the right to continued employment or social security.

Combat gender inequalities—The pandemic has placed a disproportionate burden on women as healthcare professionals, educators, and caregivers; as well as on transgender people and sex workers. States should prioritize social protection, including childcare and sexual and reproductive health services, as well as prevention and response to gender-based violence.

Uphold rights in the digital age—Digital health has boomed during covid-19. A treaty should address the need for universal access to the internet and digital technology, while upholding rights to digital privacy and non-discrimination, and promoting strict regulation of use of health data.

Transparency and trust—The COVID-19 response has been weakened by corruption. A pandemic treaty should ensure states publish detailed information about budgets, expenditures, and procurement on a live portal; as well as the evidence basis for restrictive measures such as lockdowns; and for diagnostics, therapeutics and vaccine approvals. The International Health Regulations require information-sharing about outbreaks: this has been impeded by states silencing whistleblowers. Any treaty must reaffirm the rights to freedom of expression and opinion.

Accountability and community—Any new treaty should not undermine existing human rights. Human rights obligations related to pandemics should be independently monitored by a multi-stakeholder oversight body that meaningfully incorporates civil society. Community expertise and leadership are vital to effective pandemic response: any treaty should recognize, fund, and enable safe environments for community and civil society at all levels. 

The COVID-19 pandemic starkly widened inequalities. We must seize this opportunity to reassert the principle of human equality, which must never be compromised; draw on lessons learned from the past year, and chart a better future. 

Co-authors: Sara (Meg) Davis is senior researcher, Global Health Centre at the Graduate Institute of International and Development Studies, Geneva, Switzerland. Philip Alston is professor, New York University School of Law and former UN Special Rapporteur on Extreme Poverty and Human Rights, New York, USA. Joseph J. Amon is Clinical Professor and Director of the Office of Global Health at Dornsife School of Public Health, Drexel University, Philadelphia, USA. Edwin J. Bernard is executive director, HIV Justice Network in Amsterdam, the Netherlands. Sarah M. Brooks is programme director, International Service for Human Rights in Geneva, Switzerland. Gian Luca Burci is professor in the International Law Department of the Graduate Institute of International and Development Studies, Geneva, Switzerland. Naomi Burke-Shyne is executive director, Harm Reduction International, in London, UK. Georgina Caswell is programme manager, Global Network of People Living with HIV in Cape Town, South Africa. Mikhail Golichenko is senior policy analyst, HIV Legal Network in Toronto, Ontario, Canada. Anand Grover is director, Lawyers Collective and the former UN Special Rapporteur on the Right to Physical and Mental Health in Mumbai, India. Sophie Harman is professor at the School of Politics and International Relations, Queen Mary University of London, in London, UK. Lu Jun is director of Beijing Yirenping Center in Beijing, China. Rajat Khosla is senior director of research, advocacy and policy at Amnesty International, London, UK. Kyle Knight is senior researcher, Human Rights Watch, Durham, NC, USA. Allan Maleche is executive director, Kenya Ethical and Legal Issues Network on HIV and AIDS (KELIN), Nairobi, Kenya. Tlaleng Mofokeng is UN Special Rapporteur on the Right to Physical and Mental Health. Moses Mulumba is executive director, Center for Health, Human Rights and Development, in Kampala, Uganda. Sandeep Nanwani is chief medical officer, Yayasan Kebaya in Yogyakarta, Indonesia. Mike Podmore is director, STOPAIDS in London, UK. Dainius Puras is a professor at Vilnius University and former UN Special Rapporteur on the Right to Physical and Mental Health in Vilnius, Lithuania. Nina Sun is deputy director, Global Health and assistant clinical professor at the Dornsife School of Public Health, Drexel University, Philadelphia, USA. Nerima Were is deputy director, Kenya Ethical and Legal Issues Network on HIV and AIDS (KELIN), Nairobi, Kenya. 

Editorial: “Leave no-one behind” when working to end HIV criminalisation

An editorial published to coincide with Zero Discrimination Day (March 1) by leaders in the HIV Justice movement celebrates “the courage and commitment of the growing global community of advocates, human rights defenders and others around the world who are challenging laws, policies and practices that inappropriately and unjustly criminalize people living with HIV”, but warns that this work must include and benefit those populations who are the most marginalised, and who remain most vulnerable to prosecution, despite advances in HIV science that are being used to challenge and modernise these laws.

Writing in the Journal of the International AIDS Society, the authors – who include HJN’s Executive Director, Edwin J Bernard; HJN’s Supervisory Board member, Michaela Clayton; and HJN’s Global Advisory Panel member, Edwin Cameron, along with Chris Beyrer, Desmond M. Tutu Professor of Public Health and Human Rights at the Johns Hopkins Bloomberg School of Public Health and GNP+’s Alexandra Volgina – note that despite many advances in the science of HIV there remains one area that is still an “all too common a threat to the lives and wellbeing of people living with HIV, as well as to the goal of ending the epidemic” – HIV criminalisation.

HIV criminalisation describes the unjust application of criminal and similar laws to people living with HIV ostensibly based on their HIV status, either via HIV‐specific criminal statutes or general criminal or other laws.

Citing data collated from HJN’s global case monitoring which suggests that HIV criminalisation intersects with “discrimination or criminalization on the basis of ethnicity, sex, gender identity, immigration status, sex work, sexuality and/or substance use,” they note that HIV criminalisation can be seen as a “surrogate marker for state‐sponsored stigma and discrimination against marginalized groups of people at higher risk of HIV.”

The editorial also addresses public health and healthcare workers who are often viewed as an extension of the criminal justice system by marginalised populations. “We are also seeing a frightening trend of prosecutions being initiated by those working in healthcare or public health without specific complaints. In some cases, police were notified of a person’s HIV diagnosis by health authorities, which then became a prompt to investigate the person’s relationship with their partner.”

Relatively few countries have repealed or modernised their laws, although efforts are currently underway across the globe, assisted by the 2018 publication of the Expert consensus statement on the science of HIV in the context of criminal law authored by 20 of the world’s leading HIV scientists, including Professor Beyrer.

The editorial celebrates and encourages the growing number of global advocates, human rights defenders and others around the world who are challenging HIV criminalisation but notes that everyone involved in the HIV response needs to play their part. “Ending HIV criminalization is the responsibility of us all,” they argue.

“It is important that we all understand how to ensure justice for all people living with HIV, not just those who have access to treatment and are fortunate enough to be undetectable,” they conclude, “so that we can finally end these outrageously unjust laws, policies and practices against people living with HIV in all of their diversity.”

Year in review: Celebrating successes, highlighting the many challenges ahead

This past year has shown us what happens when one pandemic –  HIV – is overshadowed by another pandemic, COVID-19.  Despite the many lessons learned from our collective advocacy against HIV criminalisation that we and our HIV JUSTICE WORLDWIDE partners highlighted in March, these lessons were mostly ignored by policymakers around the world.

The result was a series of knee-jerk legal, policy and police responses leading to the overzealous policing of people living with HIV and other key and inadequately served populations already subject to existing inequalities in law and policy, which we have been highlighting in our HIV Justice Weekly newsletter since March.

This latest pandemic overshadowed, and in some cases undermined, the work we and others have been doing to ensure a fair, just, rational and evidence-based response towards people living with HIV by the criminal justice system.

This past year we documented at least 90 cases of unjust HIV criminalisation in 25 countries, with Russia and the United States being the worse offenders.  Women living with HIV were accused in 25% of those cases. Three of these cases were for breastfeeding.  In the United States, more than 50% of those accused in HIV criminalisation cases were people of colour.  

2020 also saw Poland passing a new law against COVID-19 that also increased the criminal penalty for HIV exposure, and number of disappointing HIV criminalisation higher court appeals in the US (Ohio), and Canada (Ontario and Alberta) that appeared to ignore science over stigma.

And yet, despite the many difficulties of 2020, the movement to end unjust HIV criminalisation has continued to gain momentum.

In the United States, Washington State modernised its HIV-specific criminal law in March, reducing the ‘crime’ from a felony to a misdemeanour, adding in a number of defences, and eliminating the sex offender registration requirement.  Earlier this month, legislators in Missouri published plans to modernise its HIV-specific criminal law next year.

In Europe, Sweden abolished the legal requirement to disclose HIV status in March, the Spanish Supreme Court set an important precedent for HIV criminalisation cases in May, and in June, Scottish police ended the stigmatising practice of marking people living with HIV as ‘contagious’ in their database.

In Francophone Africa, HIV-specific criminal law reform in Benin and across the region is looking likely thanks to a recognition that existing laws do not reflect up-to-date science.

And in Eastern Europe and Central Asia, a process to completely abolish the draconian HIV-specific criminal law in Belarus has begun.

There is still so much more to do, however.  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 justice system.

We Are People, Not Clusters! Why public health surveillance using blood taken for HIV resistance testing risks doing more harm than good

by Edwin J Bernard, HJN’s Executive Director

A series of articles and editorials in the October 2020 issue of the American Journal of Bioethics published last Friday examine a growing concern amongst community leaders of people living with HIV and our scholarly allies: the use of blood taken from people living with HIV during routine testing prior to starting or changing antiretroviral therapy in surveillance databases, without our permisssion, for public health purposes. 

This is already taking place across the United States and in some Canadian provinces, and is currently being considered elsewhere in the world.

The rollout of so-called ‘molecular HIV surveillance’ to identify ‘clusters’ of transmissions to attempt to further improve public health responses to HIV is a growing source of anxiety and concern for people living with HIV in the US and Canada, especially for people who are already marginalised and criminalised in other ways, because they can’t be certain that this data won’t be shared with law enforcement or immigration authorities, which can lead to prosecution and/or deportation.

Coming to Facebook Live on 30th September – HIV Justice Live! Whose Blood is it, Anyway?  Like or follow us on Facebook to watch and participate in the first of our new interactive webshows, which will focus on molecular HIV surveillance.

 

In our lead guest editorial, entitled ‘We Are People, Not Clusters!’ which I co-authored with Alexander McClelland, Barb Cardell, Cecilia Chung, Marco Castro-Bojorquez, Martin French, Devin Hursey, Naina Khanna, Brian Minalga, Andrew Spieldenner, and Sean Strub, we support the concept of “HIV data justice” put forth in the lead target article, by Stephen Molldrem and Anthony Smith, Reassessing the Ethics of Molecular HIV Surveillance in the Era of Cluster Detection and Response: Toward HIV Data Justice.

“HIV data justice draws on the collective resources of the HIV/AIDS movement to build new alliances aimed at providing affected individuals and communities with greater control over how their data are utilized in the healthcare system, with the paired aim of providing them with greater access to better services on terms of their own choosing.”
 
Molldrem and Smith

 

In the editorial, we welcome Molldrem and Smith’s critique of the controversial rollout of molecular HIV surveillance (MHS) in the United States, which explores three intersecting concerns:

(1) the non-consensual re-purposing of personal health information and biomaterial for public health surveillance;

(2) the use of molecular HIV surveillance data in larger databases to find ‘clusters’ of infections and to make determinations about transmission directionality, and the criminalising implications that follow such determinations; and

(3) the way MHS amplifies the targeting and stigmatisation of already oppressed and marginalized communities.

The editorial questions the rationale behind the use of MHS as one of four pillars of the US Centres for Disease Control (CDC) End The Epidemic (ETE) Plan and calls for the abolition of molecular HIV surveillance in the United States as it is currently being rolled out by the CDC because it blurs the boundaries between consent and criminalisation.

Instead, we envision a future of new participatory and intersectional racial and viral justice possibilities, one which ensures the lives, voices, self-determination, and autonomy of people living with HIV are central to HIV research and public health practice.

Further reading

Bryn Nelson. Questioning the Benefits of Molecular Surveillance. POZ Magazine, July-August 2020.