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.

HIV criminalisation still an issue during COVID-19 pandemic

On 21 February, just prior to the start of the COVID-19 pandemic, we celebrated a week where – for the first time in years – we saw no reported cases of HIV criminalisation anywhere in the world.

Soon after we began to notice fewer reports of HIV criminalisation cases and fewer articles related to our collective advocacy.  We wondered at the time whether this may be due, in part, to our previous advocacy successes, athough we thought it was more likely a reflection of the media and the criminal justice system changing their focus to COVID-19.

Certainly, police have been unbelievably busy dealing with ensuring lockdowns and quarantines are followed – some more zealously than others – and courts, as well as parliaments are either closed or dealing only with the most urgent of cases. This is having a concerning impact upon the processing of HIV criminalisation cases, including appeals, leaving those unjustly accused or convicted in limbo and at greater risk of acquiring COVID-19 whilst on remand or in prison.

Now, after several weeks of seeing no HIV-related criminal cases, this past week we have, unfortunately, documented two further HIV-related arrests – a woman in the Rostov region of Russia is accused of passing on HIV to her husband and faces five years in prison; and a man in Louisiana in the United States was arrested after allegedly spitting on an officer and then charged with “intentional exposure to the AIDS virus” after he informed medical staff of his HIV-positive status.

The US news report notes – without obvious irony – the Kafkaesque nature of the law in Louisiana by concluding:

While saliva alone cannot transmit HIV or AIDS, Louisiana law holds that knowingly infected people who spit at first responders can face up to 11 years in prison and/or pay a $6,000 fine.

 

This week, we also saw a remarkably comprehensive article about HIV criminalisation in Tajikistan, which explored how and why the country’s criminal code potentially considers every HIV-positive citizen to be a criminal, what this means for people living with HIV in the country, and how to avoid prosecution as well as ways to organise.

Finally, some good news relating to HIV criminalisation as well as to COVID-19 criminalisation.

In Spain, the Supreme Court upheld the acquittal of a man accused of criminal HIV transmission noting that evidence pointed to the complainant being aware of his status prior to agreeing to condomless sex, meaning there was consent. 

And in Malta, where it was proposed earlier in the week to add COVID-19 to the list of communicable diseases covered by the law used to criminalise the wilful or negligent spread of HIV and hepatitis, this proposal has since been put on hold, due to very real concerns that this may do more harm than good for public health, as well as create difficulties around proof in court.

The Times of Malta reports:

The law could also strain the already stretched law enforcement resources if they suddenly had to deal with a flood of reports over possible criminal spreading of the virus.

“In essence, this seems like a good idea at first glance but it presents a number of problems,” one government minister privy to the discussions said.

The possibility of such a reform had not even been brought before Cabinet yet, he said, adding he understood it “has been put on the back burner for now”. 

“We have bigger fish to fry, right now.”

 

If only other punitive-minded governments – and overly-zealous law enforcement officers – around the world thought this way about COVID-19 and other communicable diseases right now, including, of course, HIV.

HIV criminalisation high on the agenda at AIDS 2018

Starting today, thousands of activists, scientists, media and others working in the HIV sector will descend upon Amsterdam for the 22nd International AIDS Conference (AIDS 2018).

For those of you able to be in Amsterdam make sure you don’t miss all the amazing HIV criminalisation events taking place before and during the conference.

Download and print this 2-page pdf covering the HIV criminalisation highlights (including pre-conferences, posters and Global Village events) put together by the HIV Justice Network on behalf of HIV JUSTICE WORLDWIDE.

STOP PRESS: For the first time since Edwin Cameron’s call to action at AIDS 2008 in Mexico City, HIV criminalisation is on the agenda during a main morning plenary session, ‘Breaking barriers of inequity in the HIV response’ on Tuesday 24th July.

HIV criminalisation survivor, and Sero Project Assistant Director, Robert Suttle, and KELIN’s Executive Director, Allan Maleche, will speak from 9.30am about, ‘Putting HIV science into the criminal justice system: Impacting lives’.

As well as highlighting the impact of HIV criminalisation on individuals, the session will alert AIDS 2018 delegates to the forthcoming ‘Expert Consensus Statement on the Science of HIV in the Context of Criminal Law’ that will be published on Wednesday 25 July 2018 at 3.15pm in the Journal of the International AIDS Society (JIAS).

The Expert Consensus Statement was authored by a global panel of leading scientists, supported by IAPAC, IAS and UNAIDS in consultation with HIV JUSTICE WORLDWIDE.

It is expected to be a key reference for clarifying important issues of HIV science in the context of criminal law and is aimed at expert witnesses, but likely to be useful for police, prosecutors, lawyers, judges, lawmakers and advocates.

You will be able to find out more about the Expert Consensus Statement, including what it means for HIV criminalisation advocacy, on Wednesday after 3.15pm Amsterdam time, by visiting http://www.hivjusticeworldwide.org where it will be highlighted on the front page.

And of course, we hope to see you at HIV JUSTICE WORLDWIDE’s one day conference this Monday July 23rd, Beyond Blame 2018: Challenging HIV Criminalisation.

Download the Beyond Blame 2018 final programme.

Only a few places remain, so register now if you want to attend. 

Otherwise you can watch the entire meeting live on the HIV JUSTICE WORLDWIDE YouTube channel and Tweet any comments or questions using the hashtag #BeyondBlame2018.

You can also the follow these other HIV criminalisation hashtags:

  • #HIVJUSTICEWORLDWIDE
  • #HIVCrim
  • #HIVIsNotACrime
  • #AIDS2018
  • #BringScienceToJustice
     

We Love Positive Women #lovepositivewomen

We Love Positive Women!

This is a love letter from the HIV Justice Network to the more than 18,000,000 women living with HIV in the world today.

The HIV Justice Network exists to end the inappropriate use of the criminal law to regulate and punish people living with HIV.

On this Valentine’s Day, we are thinking of the thousands of positive women in all of our diversity, inclusive of transgender women, who are currently incarcerated in jails, prisons, and detention centres.

We send love and support to all of the women living with HIV who have survived incarceration around the world.

We highlight the reality that many positive women who are incarcerated around the world are criminalised because of punitive and discriminatory laws on sex work, drug use, LGBT relationships, domestic violence, and HIV status. These laws serve no public health benefit yet lock people away from their homes, families, and communities.

Women living with HIV are actively fighting for justice and against discriminatory legal systems. Positive women have often led the way in the struggle against HIV criminalisation.

We ask everyone to take a quiet moment to send respect and appreciation to these accomplished and dedicated women.

We are you and you are us.

The HIV Justice Network is proud to support the Love Positive Women campaign developed and led by International Community of Women Living with HIV (ICW), one of seven founding partners of HIV JUSTICE WORLDWIDE.

After two years of our coalition, we’re really getting somewhere: here’s to even more HIV JUSTICE WORLDWIDE in 2018! by Edwin J Bernard Global Co-ordinator, HIV Justice Network / HIV JUSTICE WORLDWIDE

In September, three HIV JUSTICE WORLDWIDE founding members – Laurel Sprague, Executive Director of the Global Network of People living with HIV (GNP+), Lynette Mabote, Regional Programmes Lead at ARASA and I – presented at the Funders Concerned About AIDS (FCAA) Philanthropy Summit in Washington DC on the worldwide movement to end HIV criminalisation, alongside our key partner, Luisa Cabal, Special Adviser on Human Rights and Gender at UNAIDS. The session was chaired by Sergey Votyagov, Executive Director of the Robert Carr civil society Networks Fund, which funds the HIV JUSTICE WORLDWIDE (HJWW) coalition.

As you can see from the video of our session, we were already pretty proud of our achivements to date, but the last few months of 2017 have seen some remarkable advances in HIV justice.

Hot on the heels of the modernisation of the HIV criminalisation law in California (advocated for by our in-state partners, Positive Women’s Network-USA), we saw the emergence of a new national network of Mexican anti-criminalisation advocates (supported by SERO, and funded through the HJWW coalition) and an immediate victory with a lawmaker’s U-turn in Quintana Roo state. (Watch a short video about the meeting and its impact here.)

And in Canada, following years of advocacy from our key partner, the Canadian HIV Legal Network and their allies in the Canadian Coalition to Reform HIV Criminalisation, it was announced by Federal and Provinicial ministers on World AIDS Day that – finally! – the latest science relating to the prevention benefit of HIV treatment should be taken into consideration when prosecuting alleged HIV non-disclosure: an important, but modest advance.  There is a now a call for both a moratorium on all HIV-related prosecutions and a review of existing convictions and for a more radical overhaul of Canada’s framing of HIV non-disclosure as aggravated sexual assault.

But perhaps our proudest moment of 2017 was HJWW’s financial and technical support that led to the galvanising of (mostly) women activists in Malawi, who managed to persuade lawmakers to remove all of the problematic provisions of the HIV/AIDS (Prevention and Management) Bill, including provisions to make HIV testing and treatment mandatory for select populations on a discriminatory basis, and provisions that would have criminalised negligent, reckless and intentional HIV exposure and transmission. You can read the press release from some our HJWW partners (ARASA, GNP+ and SALC) amongst others, but to really understand the power of these women, go over to Twitter to watch some short videos here and here of their advocacy messaging to parliamentarians.

And speaking of amazing women, please visit the IAS website, where for Human Rights Day (December 10) they highlighted an interview with Ugandan nurse, Rosemary Namubiru, who was wrongfully accused of exposing a child to HIV whilst administering an injection.  I was also asked to write an accompanying blog post which summarises the current state of HIV criminalisation around the world.

Finally, please check out our new HIV JUSTICE Toolkit, which will continue to expand in both scope and languages in 2018.  It includes one of our latest videos, The Colorado Story, which explains how the law was modernised in that US state last year.  Why not subscribe to the HIV JUSTICE WORLDWIDE YouTube Channel and be the first to be notified when we upload our next videos.

Wishing you all a safe and happy holiday season: here’s to even more HIV JUSTICE WORLDWIDE in 2018!

Letter demanding release of 13 individuals arrested during legal consultation in Tanzania

October 23, 2017

Hon. George Mcheche Masaju

Attorney General of the United Republic of Tanzania

Email: g.masaju@bunge.go.tz; ag@agctz.go.tz

Hon. Bahame T.M. Nyanduga

Chairperson, Commission for Human Rights and Good Governance

United Republic of Tanzania

Email: bahame.nyanduga@chragg.go.tz

Hon. Adv. Pansy Tlakula

Chairperson, African Commission on Human and Peoples’ Rights

Email: pansy.tlakula@gmail.com

Hon. Soyata Maiga

Vice- Chairperson, African Commission on Human and Peoples’ Rights

Email: cabinetsoya@afribone.net.ml; soyatam@yahoo.fr

Hon. Solomon Ayele Dersso

Commissioner, African Commission on Human and Peoples’ Rights

Email: Solomon.dersson@gmail.com

Hon. Dr. Asha-Rose Migiro

High Commissioner of the United Republic of Tanzania to the United Kingdom & Republic of Ireland

Email: Ubalozi@tzhc.uk

Hon. Irene F. Mkwawa Kasyanju.

Ambassador Extraordinary and Plenipotentiary & Permanent Representative to the OPCW

Email: contact@tanzaniaembassy.nl

Your Honourable Excellencies,

I am the Global Co-ordinator of the HIV Justice Network based in the UK and the Netherlands and working globally to end the inappropriate use of the criminal law in the HIV response. I am writing regarding the arrests recently carried out by the Tanzanian Police of thirteen individuals, including three lawyers and their clients.

On Tuesday, 17 October 2017, a legal consultation convened by the Initiative for Strategic Litigation in Africa (ISLA) and the Community Health Services and Advocacy (CHESA) was raided by the Tanzanian Police. The consultation was convened in order to get more instructions and evidence on a case that the two organizations planned to file before a court concerning a challenge to the government’s decision to limit the provision of certain HIV-related health services that it had previously provided.

Thirteen people, including two South African citizens, one Ugandan citizen, were detained including ISLA’s Executive Director, Sibongile Ndashe, and CHESA’s Director, John Kashiha. On Wednesday, the Regional Commissioner of police issued a press statement referring to the “arrests” and stated that twelve people who were promoting homosexuality had been arrested. On Friday 20 October 2017, bail previously issued was revoked for everyone for no apparent reason. They were advised that a fresh investigation process was starting and everyone was taken to custody.

The mischaracterization of a legal consultation where lawyers and their clients were discussing a very specific case to be referred to the court as “promotion of homosexuality” is unfortunate and worrying. The police had a copy of the concept note and the agenda of the consultation. Even more alarming is that three lawyers who were part of the group, including Sibongile Ndashe, were arrested together with their clients.

The Tanzanian Constitution enshrines the right to seek legal redress when fundamental rights have been violated (Art 30(3)). The African Charter on Human and Peoples’ rights, which Tanzania is a signatory to, also recognizes an individual’s right to an appeal to competent national organs against acts violating his fundamental rights as recognized and guaranteed by conventions, laws and customs in force (Art 7(a)). Tanzania is a signatory to a number of international human rights treaties that recognizes these and other related rights.

The arrest of the thirteen people mentioned above is an attempt to intimidate citizens from approaching judicial institutions when their rights have been violated. Furthermore, the arrest of lawyers while they are advising their clients on the steps to be taken to seek legal redress is clearly aimed at creating an environment where lawyers are afraid to provide legal representation and to ultimately create an environment where it is unthinkable to hold the state accountable for human rights violations.

We at the HIV Justice Network are strongly convinced that there is no legal basis for these proceedings, as demonstrated by the press statement released by the Regional Commissioner of police, and that the arrests are arbitrary and politically motivated.

Therefore, we call upon Tanzanian authorities to immediately release the thirteen individuals who are currently arbitrarily detained; to allow citizens to access legal representation without intimidation; to discontinue the ongoing persecution of human rights defenders, lawyers and their clients and refrain from such future actions; and to allow the foreign nationals, whose passports have been seized, to leave the country.

Your sincerely,

Edwin J Bernard

Global Co-ordinator,

HIV Justice Network

Download letter in pdf here: Letter demanding release of ISLA & CHESA consultation participants

Remarks delivered by Edwin J Bernard at ‘Leave No One Behind: Lessons from the Global Commission on HIV and the Law for Agenda 2030’

Today, at a side meeting convened the United Nations Development Programme (UNDP) during the High-Level Political Forum, HIV Justice Network’s Global Co-ordinator, Edwin J Bernard, delivered the following remarks.

Despite the incredible advances in the science of HIV treatment and prevention, and despite the roadmap created by the prescient and powerful recommendations of the Global Commission on HIV and the Law, too many people who could benefit from these scientific advances are being left behind.

As someone who acquired HIV in 1983 and survived to benefit from treatment, it pains me greatly to know that people are still suffering – dying – unnecessarily due to legal and policy barriers.

There’s no greater manifestation of the stigma of HIV, or of being associated with HIV, than the multitude of bad laws and policies on the books in almost every country in the world that punish people for not conforming to societal or cultural or the dominant religious norms: people living with HIV and other key populations most impacted by HIV.

These laws send people underground, away from services that could offer them dignity, save their lives, and improve the public health – and purse.  HIV prevention and treatment are cost-saving in the long-term: healthy, productive and happy lives make communities, societies and countries rich.

But when healthcare workers are – or are perceived to be – de facto agents of the state, they are unable to deliver healthcare to those that really need it.  That is what bad laws do.

Removing these legal barriers is the most cost-effective intervention any state can do – to ensure they leave no-one behind.  No law reform is too difficult to tackle, no supportive law is too politically sensitive when the lives of people – and the health, dignity and wealth of a nation – are at stake.

In my own work, to see an end to unjust laws and prosecutions aimed at people living with HIV based solely on our HIV-positive status, it is frustrating and heart-breaking to see my brothers and sisters still being prosecuted and convicted under stigmatising, unscientific, overly-broad and counterproductive HIV-related laws that run contrary to the recommendation of the Global Commission and of UNAIDS, and ignore the latest scientific and medical evidence as well as best public health practice.

In the five years since the Global Commission’s report was published, a number of countries and jurisdictions have been moving in the right direction to remove unjust laws and, in some cases, replace them with enabling laws that offer support, not punishment; dignity not despair; a long and healthy life, not an early death.

These changes have required sustained efforts from civil society, including by networks of people living with HIV or other key populations, who have reached out to the judiciary, or parliamentarians, or police, and worked with them to help them understand how and why a punitive approach towards people with HIV, or those communities disproportionately impacted by HIV, does more harm than good.

In my experience, very little gets done without civil society participation.   Whilst we might be perceived as ‘thorns in your side’  or worse by some governments, like Jiminy Cricket we are your conscience, and we will persist despite the shrinking spaces for us due to the changing donor landscape / or underfunding / or laws that prevent us from receiving funds or doing our work.

Because we know we are on the right side of history.

So how do we move forward?

Once enlightened – once you have read and understood that the recommendation of the Global Commission on HIV and the Law – it is clear what needs to be done: remove the laws that create the barriers.

So I am heartened when partnerships form between civil society, scientists, human rights defenders and those in parliament or government. And thank you to UNDP and to UNAIDS for your leadership on this issue. Long may it continue!  And thank you to all of you working in the UN system for your support; please remember it is your role to be a broker – to facilitate partnerships between civil society and government. Please keep doing this crucial work.

Member states: please listen to the communities most impacted by HIV.  We know how to reach those who are left behind.  But we can’t do it when bad laws stand in our way, and we can’t help you change those laws without funding and spaces to meet and work.

Finally, my own organisation the HIV Justice Network – and the HIV JUSTICE WORLDWIDE movement to end unjust HIV criminalisation – has only really flourished since we received funding last year from the Robert Carr civil society Network Fund, a unique multilateral funding mechanism that allows global and regional networks of people living with, and most impacted by HIV, to do the work that no-one else wants to – or indeed, can do.  Please ask your government to support and replenish the fund.

Love Positive Women

Let’s hear it for Positive Women!

This is a love letter from the HIV Justice Network to the more than 18,000,000 women living with HIV in the world today.

The HIV Justice Network exists to end the inappropriate use of the criminal law to regulate and punish people living with HIV. On this Valentine’s Day, we are thinking of the thousands of positive women in all of our diversity, inclusive of transgender women, who are currently incarcerated in jails, prisons, and detention centres.

We send love and support to all of the women living with HIV who have survived incarceration around the world. We highlight the reality that many positive women who are incarcerated around the world are criminalised because of punitive and discriminatory laws on sex work, drug use, LGBT relationships, domestic violence, and HIV status. These laws serve no public health benefit yet lock people away from their homes, families, and communities.

Women living with HIV are actively fighting for justice and against discriminatory legal systems. Positive women have often led the way in the struggle against HIV criminalisation. Among the many courageous and compassionate leaders in our movement:

We recognize Lillian Mworeko of Uganda and the International Community of Women (ICW), East Africa, for their unflagging media and legal advocacy to overturn discriminatory HIV laws in the Constitutional Court and to ensure that women living with HIV in Uganda can receive a fair trial.

We recognize Martha Tholonah and the women of ICW Zimbabwe for their advocacy in challenging the overly broad and discriminatory Zimbabwean criminal code on HIV exposure.

We recognize Clara Banya and the women of ICW Malawi for their loud insistence that breastfeeding while HIV positive is not a crime and we celebrate with them the positive court ruling in January 2017.

We recognize the courageous positive women of IWC Namibia who stood strong for the autonomy and sexual and reproductive health rights of women living with HIV and fought against sterilisation. We celebrate with them the positive court ruling won in 2014.

We recognize Marama Pala of INA Maori HIV/AIDS Foundation for her advocacy in New Zealand and globally to demonstrate that women’s legal empowerment develops through women’s solidarity and action rather than through a forced status as a victim by the courts.

We recognize Jessica Whitbread of ICW Global for her outspoken advocacy on behalf of positive women’s sexuality and against criminal justice proceedings in matters of intimate relationships.

In the U.S., we recognize Naina Khanna and the women of the US Positive Women’s Network for their participation in the legal challenge to HIV criminalisation in the State of California; Barb Cardell and Kari Hartel and the Colorado Mod Squad for their success in reforming Colorado HIV laws to better protect sex workers and transgender people living with HIV; and Tami Haught and Community HIV/Hepatitis Advocates of Iowa Network for their success in reforming Iowa HIV laws.

We ask everyone to take a quiet moment to send respect and appreciation to these accomplished and dedicated women.

We are you and you are us.

Screen Shot 2017-02-14 at 2.43.39 PM

Note: If you know a woman openly living with HIV to add to this honour roll, please let us know.

The HIV Justice Network is proud to support the the Love Positive Women campaign developed and led by International Community of Women Living with HIV (ICW), one of seven founding partners of HIV JUSTICE WORLDWIDE.

HIV Criminalisation: Legal Violence and the Lives of People Living with HIV, by Alexander McClelland

Criminal Charges for HIV Non-disclosure, Exposure and Transmission: Legal Violence and the Lives of People Living with HIV

 

The following is an edited version of remarks presented by Alexander McClelland as part of ‘The Movement to End HIV Criminalization’ panel, held on September 15 2016 at Concordia University, Montreal, Canada.

Introduction

My work examines the relationship between the law, life and disease. I look at what takes place at the intersection of legal and medical knowledge, including what kinds of processes are deployed and enacted onto people as a result of that intersection. In relation to studying law and society, I examine law from a perspective that there is no absolute legal truth, but rather, that laws and who is understood as ‘criminal’ are developed over history and change based on social norms and contexts.

My research is examining the lived experiences of people who have been criminally charged in Canada in relation to HIV non-disclosure, exposure and transmission. As we know, Canada is a country recognized with having high rates of criminalization towards people living with HIV. Canada is one of the leading countries in the world to prosecute people with HIV who have not told a sex partner they are HIV-positive if that sex poses a ‘realistic possibility of transmission’, this is defined by the Supreme Court of Canada as sex without a condom and a low viral load combined. Under this application of the law people have been imprisoned when they were uninfectious due to HIV medications and when there was no transmission of HIV.  It is estimated that there are approximately 180 cases that have taken place since 1989, when the first criminal charges were laid. And the trend indicates that the number of new cases is on the rise.

These approximately 180 cases have been applied asymmetrically and do not follow the epidemiological trends of the HIV epidemic, which if the law was objective, might be the case. Rather, through enumerating the cases with demographic data, social researchers have been able to reveal the biased racialized and gendered dimensions of this criminalization phenomenon. As a majority of those charged and prosecuted have been black men who have had sex with women.

Using a feminist form of sociological ethnographic inquiry[i], my approach has been to examine the impact of these laws on the people who they have targeted, from their own perspective. This kind of research aims to ensure that people do not become just objects to be studied, but are rather understood as people who are active agents. The premise of my work is to centrally place the experiences of people with HIV who have experienced criminalization first-hand so that efforts to address injustice and over-criminalization are directly informed by people’s lived realities.

I am a qualitative researcher and my work consists of archival research and a series of qualitative interviews. So far I have spoken with 14 people from across Canada.  Through these interviews I aim to understand how being criminalized has materially shaped people’s lives. My research is still ongoing so what I am presenting is preliminary and still in process.

Every person I have spoken with who was charged criminally (12 of the 14) was charged with aggravated sexual assault, often more than once, along with a diverse range of other charges. Aggravated sexual assault is one of the harshest and most serious charges in the criminal code reserved for violent rapes involving a weapon, which can receive a sentence of life in prison. In the cases I looked at, the aggravating factor is understood by the courts to be HIV.

Living in a negative relation to the law

The people I have worked with live their lives in a negative relation to the law[ii] due to being labelled a ‘criminal’ and a ‘risk to public safety’ through being charged and/or prosecuted in relation to HIV non-disclosure, exposure or transmission. Living in a negative relation to the law means that one is rendered less of a person with codified rights, less of a person who is in need of protection from the law, and is rather regarded more as object of risk that legally constituted persons are to be protected from– protected from through forms of control, coercion and incapacitation. Being placed in a negative relation to the law is something that is enacted onto people of colour, people in poverty, people deemed deviant. This is a practice of extending the power of colonization, white supremacy, misogyny and homophobia, among others forms of marginalization and oppression.

People living with HIV today in Canada often live in a negative relation to the law just due to the fact that they are HIV-positive. We can very easily be placed in a tenuous relationship with our legally regarded personhood.

At its most severe, living with HIV in a negative relation to the law means your body can be disappeared by the state with impunity. Here I am thinking of the lives of H. Matthews and I. Williams.[iii]

Outside PrisonMatthews, at 26 years old, a black man and newcomer to Canada, was convicted of 2 counts of aggravated sexual assault, one count of assault, and two other minor charges for not telling 4 women his HIV status before having sex with them. None of the women contracted HIV. He was sentenced to 40 months in prison. When he entered prison his CD4 count was 560. But while in prison he reported a series of health issues to the staff and in less than a year his CD4 count was 160 and he had lost 36 pounds. Despite seeing a number of medical experts, at no time over the course of his engagement with the criminal justice system was he put on any anti-HIV treatments despite being incarcerated because he potentially exposed others to HIV.

Matthews died of AIDS on 12th of August 2007 in Central North Correctional Centre in Penetanguishene Ontario at 27 years old in a country in an era and country where, due to supposed access to life-saving medications, dying of AIDS has been increasingly rendered a rare occurrence, but where incarceration for HIV non-disclosure has been on the rise. There was an inquest into Matthews’ death, but in inquests into prison deaths in Canada, no one can be found culpable, and no one was held accountable for his death. The only reason information was released about his cause of death was because corrections staff were subpoenaed to testify at the inquest. Otherwise the ministry of corrections did not release any information about his death despite repeated requests from Matthews’s family and community organizations. A series of nine recommendations were made from the inquest to prevent future deaths, none of which have been implemented by the ministry of corrections. In the coroners report it indicated that he died of ‘natural causes’.

WarkworthAnother life that was disappeared was that of I. Williams, at 49 years old, who was first person sentenced after the Mabior Supreme Court decision in 2012. This was the second conviction for the father, who was sentenced to 4 years 9 months, which he served in Warkworth Institution in Ontario. As a Trinidad-born permanent resident, he would be deported after completion of his sentence. He pled guilty to charges of aggravated sexual assault. HIV was not transmitted to any of the women involved in the case.  At the trial Williams stated he had been diagnosed with HIV in 1996, and had since been lonely and was been shunned by family and strangers alike soon as they learn of his status, as reported by the Toronto Star, he stated: ‘I feel very sorry for them people that I put that fear in them because I’m afraid, I’m afraid to be rejected, It is inhumane,’ he wept. ‘It’s very cruel,’ he said to the judge. He also told that court that convicting him and deporting him to Trinidad would be akin to a death sentence, because there he would not receive the health care he needs.

On October 1st 2013 Williams was reported as dead while in custody. Informal reports from people close to Williams indicated that he had been trying to get medical care for an injury for over six days before he was found dead due an untreated abscess on his leg.  No details were released from Corrections, and there was no inquest into his death.

Amplification of penality: The compounding violence of HIV & criminal charges

Very plainly, living in a negative relation to the law in Canada when having HIV results in an amplification of penality. In Canada, the intersection of HIV and law in relation to non-disclosure, transmission and exposure makes possible a range of legal and bureaucratic punishments, including the most severe and harsh available, along with a range of interpersonal, casual forms of stigma, discrimination, punishment and violence. Understanding the different ways that violence manifests can help us understand the best course of action to call for accountability.

All of these types of punishment result in violence, violence that can be called legal violence.[iv] Legal violence being the forms of violence that are made possible once someone has engaged with the law. Examining the phenomena of HIV criminalization with the concept of legal violence can help us to understand the relationship between law and violence and how people become targets of violence because they are targets of the law.

The amplification of penality that manifests in these cases means that mechanisms usually reserved as exceptions can easily become the rule. Exceptions such as the police releasing a photo to the public before prosecution for reasons of ‘public safety’, denying people bail even if they have never been charged before and present themselves with their family as not being a flight risk, denying people a pre-trail assessment, being tried as an adult and being placed in an adult jail when under-age, placing people in solitary confinement for long periods of time for reasons of security, or labelling people with dangerous offender status (meaning someone can be confined indefinitely after a sentence is served). These exceptions can come to be the norm in cases of HIV non-disclosure, exposure and transmission.

Guilty before proven innocent

The amplification of penality begins as soon as the charges are applied and does relate to a guilty verdict: People who are accused can be treated as guilty before proven innocent, and not the other way around.

For example, after being charged with one count of aggravated sexual assault, one indigenous man I spoke with was fired from his job due to being charged with rape and by having his HIV-positive status widely disclosed without his consent by people close to the woman who accused him.  The man told to me that he had been in a relationship with the woman and had previously disclosed to her, when he broke up with her she went to the police. The aggravated sexual assault charge and loss of his job caused the man to have a mental breakdown. He then lost his housing and ended up living out of a McDonald’s bathroom. All of his friends turned against him, and he removed himself from social media due to the intense levels of daily harassment he faced online. The mark of just the accusation caused his entire reality to be drastically altered for the worse. He is still awaiting trial.

A white woman whom I spoke with attended a hotel party and blacked out at the party, where she was then gang-raped. She told me she did not have the capacity to disclose her HIV-positive status, as she was extremely intoxicated at the time of the assault against her. The next day she went to the police, who took a statement from her. The following day she was charged with multiple accounts of aggravated sexual assault. Her photograph, HIV-positive status and biometric details were widely distributed by the police, at which time multiple media articles were written about her. Because she had a history as a sex worker the articles painted her as a predator with HIV who was trying to spread HIV to others. Her privacy breached, her social life ruined. HIV was not transmitted to any of the men involved. She was prosecuted and ultimately served over 5 years in a corrections institution.

A black man I spoke with, after being called by the police about his charge of aggravated sexual assault, went to the police station to turn himself in. At the police station he was questioned without a lawyer present, and then was taken into a separate room and severely beaten by police. He was knocked unconscious and unaware of what had happened to him. Afterwards the police put him back in the questioning room and told him that nothing had happened and that he was fine. He is certain he was beaten due to having HIV and being charged with a rape charge. The accuser did not acquire HIV and the man mentioned that she tried to come back to him after initially calling the police. In his case, he ultimately appealed to the superior court in the province and his charges were stayed – meaning he was not found guilty. This was only after serving approx. four years in a combination of house arrest and prison.

The violence of incarceration

The amplification of penality continues and becomes more formalized once someone is prosecuted. All people who are incarcerated in Canada are vulnerable to violence, but when HIV is introduced the vulnerabilities can be compounded.

A white man I spoke with who was prosecuted told me his ex-boyfriend called the police after the man disclosed to him. The man says he hadn’t disclosed his status previously, as he said he didn’t have the skills to do so. He also understood from his doctor that he was uninfectious as he had been on HIV medications.  There was no allegation of HIV transmission. He had no previous criminal record and had never been in prison. One his first day inside prison, he was placed in general population, and was not given choice for protective custody.[v] During his first few days inside in general population, the man was surrounded on the range while using the phone to talk to his lawyer. The inmates who surrounded him asked the man what his charge was, saying he was lying and they knew he was a rapist with HIV. He was publicly beaten very severely by the inmates, all this in front of guard staff who didn’t intervene for a long period of time. Once the staff intervened, the man was then asked if they wanted to go into protective custody. He is certain that the staff leaked his charges and HIV-positive status to the men on his range, knowing he would then face physical violence. Eventually the man was placed in administrative segregation ‘for his own protection’. In administrative segregation he was stripped nude, only had a concrete floor, no bed, or blankets, and was given a just one sheet of paper and a pencil to occupy his 23.5 hours a day on lockdown. He served out the end of his sentence in those conditions. He is now suing corrections for his treatment by the guards.

Inside PrisonAn indigenous woman I spoke with was also placed into administrative segregation. She was sentenced to 2-years on charges of aggravated sexual assault. When incarcerated she was asked if she wanted to be by herself or in general population. She asked to be by herself – the conditions of which we not explained to her beforehand. This meant administrative segregation, which also included requirements for suicide watch. Under those conditions the woman was striped naked, placed in a cell with only a concert floor, a video camera watching her, and a window that a male guard would watch her through at all hours. She did not have access to her anti-anxiety or HIV medications.[vi] Eventually her lawyer got her released from these conditions and she is currently appealing her conviction.

A Métis man who I spoke with, who was serving a 5.5-year sentence in protective custody, while inside got very serious bacterial infection is his genital area. The infection persisted for over a month during which time he made repeated requests to see a doctor, which were delayed or denied. At one point a guard whom had previously let the man know that he was aware of his HIV-positive status, took the man’s written request to access the doctor and ripped it up on front of the man and threw it in the trash. It was not until the situation nearly threatened the man’s life that he was taken to the doctor for the emergency – this was months after the initial request by the man. This story becomes even more disturbing when we remember the deaths of Williams and Matthews.

The mark of criminality in daily life: Stigma & ongoing surveillance

The impact of penality extends well beyond prosecution, if there is a prosecution. A white man who I spoke with was under house arrest for over 3-years. His charges were ultimately stayed, as his case only involved a ‘blowjob’ and the Crown prosecutor was likely to lose at trial. No HIV transmission was alleged in the case. Under house arrest, he was to live in the houses of different sureties. He was reliant on the surety, couldn’t work, or go to school, and was severely isolated.  Once the charges were stayed, he went to find his own housing. His case had been in the media, and despite the charge being stayed, his and his name when searched in Google revealed details about his HIV-positive status and the aggravated sexual assault charges. When applying for one apartment, he got a call back, and the landlord asked him to come back to visit the place, a good sign he thought. When he showed up the landlord opened the door and yelled at the man ‘I don’t rent to rapists’ and then pushed the man down the flight of stairs to the home. The man has also been denied jobs for the same reason.

In regards to extending penality beyond a prosecution, seven of the people I have spoken with are now registered sex offenders. The registry is a mechanism for continued police surveillance after prison release. A number of these people prior to incarceration used to work in professions that require background checks, which would now turn up badly due to the criminal record and Sex Offender Registry listing. One woman I spoke with used to do childcare for her job, and as a result of being on the registry she cannot get the job she used to have. This is also the case with others, which means they live of social assistance support even though they want to work. The result of their prosecution continues to extend into their daily lives today through threatening their economic security.

As a result of their experiences, every person I have interviewed has noted that they have either tried to commit suicide, or has had periods of regular suicidal ideation. Today, a majority of the people I spoke with live with post-traumatic stress disorder, which has a wide range of impacts on their daily lives. All of them also now have a complex and strained relationship with society. Many are very angry at society, a society, which took their personhood away and has treated them as less than human.

Bearing witness to call for action

All of this violence enacted towards them because of a supposed ‘crime’ that is entirely non-violent, and in which the notion of harm is an ideological one rooted in HIV-related stigma and AIDS-phobia. A crime where proving the intent to harm is extremely difficult, but due to fear and out-dated notions of AIDS as infectious and deadly, proving intent has been replaced by the fact that someone just has HIV. In many cases those who were charged and/or prosecuted explained to me that they understood that they took steps to protect their partners, such as using condoms, or regular taking medications so that they would be rendered uninfectious. What does it say about our society that the criminal justice system we have employs its most punitive functions towards people who have done no violence except perhaps that they have not told someone else that they have a medically controllable chronic disease?

Revealing these forms of legal violence is part of a deliberate political project – forms of violence that are simultaneously institutional and interpersonal, and both physical and psychological. These forms of violence are often obscured through bureaucracy, and forms of marginalization because the people onto whom these forms of violence are enacted have been deemed unworthy of living as legally safeguarded persons. These forms of violence are rooted in stigma and a fear of the ‘other’. These forms of violence are an extension of white supremacy, homophobia, colonization and misogyny. Many of the people I have spoken with live in poverty and are racialized. Women I have spoken with have been assaulted, but they are the ones who are criminally charged. Through revealing these forms of legal violence I hope we will be better positioned to deem thus situation unacceptable. To bear witness so we can call for action. Our work on this issue should be an act of refusal, a refusal to accept this current situation and a refusal to let these lives be rendered disposable by institutions of the state.

People living with HIV are a people who are over-policed but are under-protected. We live under heightened state and community surveillance due to criminalization.  But we are provided limited protections when we call for help. We are deemed unworthy of care and support, unless that support is instrumental in helping us not transmit HIV to others. Despite all of this, all of the people I have spoken with for my project are passionate, kind, funny, charming and dynamic people. People with a visions for the future, and who wanted to share their stories for this project as an act of healing, as a way to seek justice, and as a way to turn what happened to them into a positive force for change.

Alex photo

Alexander McClelland is a researcher who is currently working on a doctorate at the Centre for Interdisciplinary Studies on Culture and Society, Concordia University. His work is supported through the Canadian Institutes of Health Research and Concordia University.

 

 

 

Endnotes

[i] See: Smith, Dorothy. E. (2005). Institutional Ethnography: A Sociology for People. Toronto: AltaMira Press.

[ii] Existing in a negative relation to the law means people who are institutionally marked as criminals, who are then rendered civilly and socially dead under legal regimes, people who through being labelled a criminal are deemed worthy of being dehumanized through forms of state institutional punishment. I draw on this notion he living in a negative relation to the law as elaborated through the work of Colin developed in the work of Colin Dayan (see: Dayan, Colin. 2011. The Law is a White Dog: How Legal Rituals Make and Unmake Persons. Princeton University Press: Princeton).

[iii] I have provided some privacy through not indicating full names.

[iv] Legal violence helps us examine Including how law makes possible forms of violence through forms of legal interpretation, incarceration, and sentencing, which are acts of violence through taking one’s legal personhood away. The violent actions made possible by the law are also often themselves deemed illegal. But because legal violence is often targeted towards people whose legal personhood has been deconstituted, the illegality of these forms of violence can go unrecognized or unquestioned.  This concept has been elaborated in the work of Robert Cover (see: Cover, Robert. 1986. Violence and the Word. The Yale Law Journal, 95, 1601-1629.)

[v] It is required that someone be given the choice to go into protective custody, especially if the person has a charge such as aggravated sexual assault, know as a “dirty charge” inside prison, where you would go into protective custody to avoid violence from other inmates.

[vi] It should also be noted that all of the people who I spoke with that were incarcerated had numerous difficulties in accessing their HIV medications – despite being incarcerated for having HIV, in a country where being detectable can result in a crime, people with HIV who are incarcerated have a very hard time accessing their HIV medications due to a range of bureaucratic, logistical and punitive barriers

Why advocacy against HIV criminalisation must be part of discussions on gender, human rights, and sexual and reproductive health and rights of women living with HIV, by Evgenia Maron

Earlier this week, I attended a meeting in Almaty, Kazakhstan, convened by UNAIDS and UN Women entitled ‘Leave No One Behind: Bringing needs and priorities of women living with HIV into policies and actions’.

Here, NGOs, community members, governments and human rights defenders from Central Asia came together to share best practices by and for women living with HIV and to cherish the leading role of women’s organisations and their contribution.

The meeting also sought to acknowledge achievements of the UNAIDS Unified Budget, Results and Accountability Framework (UBRAF) that contributes to improving the lives of women living with HIV.  This was an important venue to discuss how global goals – e.g. Political Declaration on HIV and AIDS, new UNAIDS Strategy 2016-2021, and Key AIDS-Related SDGs For 2030 – are linked to local goals.

Among the meeting priorities were the focus on the leadership of women living with HIV presenting the outcomes of their UBRAF-funded projects, sharing their success stories.

In addition, networks of women living with HIV in Kazakhstan and Tajikistan presented summary results of the assessment of sustainability and fundraising competency and of the PLHIV Stigma Index, demonstrating the need for spaces for leadership and empowerment of networks, and showing where opportunities of reducing discrimination have taken place, through blogging, international campaigns, clips and photo projects.

I delivered a presentation on behalf of the HIV Justice Network (HJN) on HIV criminalisation, and what women’s networks can do to challenge it, seeking to share the monitoring outcomes documented by us in the countries of Eastern Europe and Central Asia (EECA).

Since 2007, we have documented over 25 criminal cases against women living with HIV for HIV alleged exposure and/or transmission, mainly in Russia, Belarus, Ukraine and Kazakhstan. We also know about HIV-related criminalisation of marginalised groups of women in Kyrgyzstan, Moldova and Tajikistan during this period.

The actual number of prosecutions is certainly much higher.

Screenshot 2016-12-07 09.56.58Constituting over 50% of people living with HIV, women are seen as both victims and perpetrators in regards to HIV criminalisation, and have been impacted by criminalisation in many ways – including in their sexual relationships, violating their reproductive rights, and in the case of sex workers, being doubly criminalised for working and living with HIV.

Linking gender inequality and HIV stigma makes it obvious that women rarely have economic independence and power to make decisions about their bodies, including whether or not (male) condoms are used, and the lived experience of fear of prosecution prevents women from getting tested, knowing their status, and getting HIV treatment, because many laws are applied precisely against those who know about their diagnosis.

And there is evidence that intimate partner violence often occurs when a woman discloses her HIV status.

One of our main concerns is that the names of women arrested and prosecuted are disclosed in the media. Another is that women are usually prosecuted by their intimate male partners.

HJN has documented cases where women were prosecuted not only for alleged transmission (when the alleged transmission may have occurred from the complainant to the accused), but also for potential or perceived HIV exposure (when there may have been no exposure risk).

We need to pay special attention to prosecutions of pregnant women or for allowing vertical transmission.

We believe all of the above cases are actually the results of structural or cultural violence – these prosecutions both unjustly scapegoat individual women and justify direct violence against women living with HIV.

Alina Yaroslavska of Positive Women in Ukraine commented:

“Before HIV criminalization was not on the agenda, especially we didn’t focus on why it’s important for women, how it affects women’s lives and the epidemics as a whole. In fact, we need to gather these pieces of the puzzle. This piece is very important: on one hand, we can help people in a concrete way, on the other hand, we can take effective measure to eliminate this phenomenon. We now are forming our operational plan for the next year, and I think we will include HIV criminalization as an issue. We will meet the network of people living with HIV to join the Ukraine’s initiative to remove the corresponding criminal article. Secondly, we can include in the plan measures to support women to talk about this issue and motivate more women to join the movement for HIV Justice Worldwide.

Calling on women’s networks to work with the media, at the meeting we highlighted some media contexts, which regrettably affect the overall image of women living with HIV.  Poorly written reports of such cases – without context or balance –  contribute to stigma, discrimination and violence.

Screenshot 2016-12-07 09.56.20None of the women prosecuted had an opportunity to speak for herself, publicly. What is leading to broader devastating consequences to the women and their families is that at least half of women were subjected to public ‘slut shaming’. All of them are described in an active voice as criminals and ‘sources of infection’ in the eyes of the public health perspective is discussed, which is devastating for the future of these women.

As well as introducing HIV criminalisation as an issue at the meeting, we also helped to bring a better understanding of the roots of stigma and discrimination of women living with HIV, highlighting the experiences of women’s network overseas.

On one hand, our region has badly written laws and unjust prosecutions. On the other, we don’t yet know enough about to bring about meaninful change.

By introducing HIV Justice Worldwide, and the ultimate change that we want to see as removal of discriminatory laws and practices, we are inviting organisations, advocates and communities to join us to share their experiences and learn more about successes and challenges.

The meeting was a valuable a space for dialogue, skills exchange, strategising, and networking in order to improve situation for women living with HIV in the region. Using this opportunity to talk about HIV criminalisation placed the issue within the broader context of gender, human rights, HIV, and sexual and reproductive health and rights of women.

We also discussed how we can provide rapid response and support to women criminalised under HIV-specific laws and beyond.

To think together with partners how we can focus energy and resources on creating an environment where people living with HIV can disclose their HIV status without fear of rejection, violence or discrimination is a great move towards HIV justice in the region.

With women’s networks and stakeholders, we further discussed actions required to promote implementation on HIV/AIDS and gender equality in the Sustainable Development Goals (SDGs), notably SDG 5 – gender equality – and SDG 10 – reduced inqualities.

The need to revise and remove laws that criminalise HIV non-disclosure, exposure and transmission was highlighted as especially important for women living with HIV, along with introducing by law comprehensive sexual and reproductive rights and education.

The intersection of women’s rights and HIV remains an important entry point for a dialogue with governments and health authorities in Central Asia. This event had an ambitious long standing goal to address all forms of violence and harmful practices perpetrated on the basis of gender as well as prioritisation of empowerment of women and girls in developing, planning, implementing and evaluating national HIV strategic plans and policy frameworks, and, hopefully, stopping HIV criminalisation is amongst them.

Evgenia Maron is the HIV Justice Network’s EECA consultant.