HJN’s Executive Director’s remarks at the UNAIDS Board Meeting on the sustainability of the HIV response

UNAIDS Programme Coordination Board (PCB) Thematic Meeting on the Sustainability of HIV Response

Round Table 1: The context and urgency of sustainability planning and response

Remarks from Edwin J Bernard, Executive Director, HIV Justice Network, Netherlands on community leadership to address human rights barriers

I am a gay man who acquired HIV 41 years ago in 1983. It was a significant year in other ways too:

  • HIV was first identified as the cause of AIDS
  • WHO held its first global AIDS meeting
  • Richard Berkowitz and Michael Callen published ‘how to have sex in an epidemic’ inventing condom-based safer sex
  • And a small group of people living with AIDS became the first community leaders in the HIV response, creating the Denver Principles, the blueprint for GIPA and MIPA principles now embedded in UNAIDS’ approach to community leadership to address human rights barriers.

Communities involve many different groups, working locally, nationally, regionally and globally. We are communities of women, men and youth living with HIV in all our diversities, as well as communities of gay men and other men who have sex with men, communities of sex workers, communities of transgender people, communities of people who use drugs. We are the key populations

And then there are communities of allies – human rights defenders who understand that public health is human rights and vice versa.

Despite member states committing to removing these human rights barriers in the 2021 Political Declaration – the 10-10-10 targets – we are far from getting anywhere close to achieving these targets because there are still far too many human rights barriers.

These are far too numerous to list, but they include gender inequality and gender-based violence; discrimination when receiving healthcare, in the workplace, in education, and in humanitarian settings; not being able to enter or migrate to a country of which you are not a citizen because of your HIV status; and the growing number of countries with so called ‘foreign agent’ laws that are closing civic space and stifling community leadership.

On top of these, every single member state criminalises one or more of the key populations, fully or partially, and 79 countries have HIV-specific criminal laws that unjustly criminalise HIV non-disclosure, exposure or unintentional transmission.

Ending HIV criminalisation is the focus of my organisation, the HIV Justice Network, and the global HIV JUSTICE WORLDWIDE coalition that we co-ordinate.

We can do this work thanks primarily to the Robert Carr Fund, which recognises the importance of community-led regional and global networks and our key role in addressing human rights barriers impacting the HIV response.

Dismantling discriminatory systems that have been built over decades and that oppress people living with and affected by HIV takes time and money – and needs community leadership.

So, if sustainability means a move to country-led integrated health systems, this will also mean that all the criminalised and marginalised people I’ve just mentioned will be even more left behind than they currently are.

But there’s a cheap and simple solution: decriminalisation!

A 2022 study from the Alliance for Public Health found that cost savings from decriminalisation of drug use could greatly reduce HIV transmission through increased coverage of opioid agonist therapy and antiretroviral therapy among people who use drugs in eastern Europe and central Asia.

Another 2022 study, from the Williams Institute, on the enforcement of HIV criminalisation laws in Tennessee of so called ‘aggravated prostitution’ – when a sex worker arrested for soliciting is found to be living with HIV – and criminal HIV ‘exposure’ – when a person living with HIV is prosecuted for allegedly not disclosing their HIV status before sex that may or may not risk transmission – estimated that the total cost of incarceration in prison for these unjust HIV-related crimes was $3.8 million.

And a 2021 study found that decriminalising sex work in Washington DC would generate over USD 5000 paid in income taxes by each sex worker – because sex work is work, after all! – plus more than USD20,000 in criminal legal system savings per sex worker a year.

If you decriminalise you not only save money you also ensure that every single person living with, or affected by HIV, gets the HIV services they need.

Following the science and basing laws and policies on public health and not morality or stigma saves money.

So, member states, if you just stop wasting money on ineffective, counterproductive criminalisation and invest in proven treatment and prevention programmes, sustainability of the HIV response is within sight.

To get to 2030, and beyond, to end AIDS as a public health threat, we need to ensure that we don’t forget the dignity and rights of people living with and affected by HIV  – easy to cut funding for, and hard to measure – and make sure that we include ending all of forms of HIV-related stigma, discrimination and criminalisation and strive for all forms of equality and empowerment.

In the drafting room on Tuesday, the NGO Delegation added criminalisation to the list that included stigma and discrimination, but the final draft you will vote on later today no longer includes mention of criminalisation as a barrier to testing. I implore you commit to ensure that my recommendation to decriminalise to sustain the HIV response is included in any and all decision points that will come out of this meeting.

Key messages summary

  • Human rights, gender justice and all the other10-10-10 societal enabler targets are essential, non-negotiable aspects of sustainability.
  • Community leadership is essential to reach 2030 and to sustain the HIV response beyond that date.
  • Don’t underestimate – or create more barriers for – communities. We are the experts in understanding what is needed to successfully achieve the end of AIDS.
  • Support communities by funding us, including replenishing the Robert Carr Fund.
  • The single most cost-effective intervention for every member state is to decriminalise, decriminalise, decriminalise!

HIV Is Not A Crime Awareness Day goes global!

Next Wednesday 28th February is HIV Is Not A Crime Awareness Day.

For the first time, HIV Is Not A Crime Awareness Day – which began two years ago in the United States – has gone global! This year’s theme is: “You care about ending HIV criminalisation – you just don’t know it yet!”

That’s why we’ll be producing a very special episode of our webshow, HIV Justice Live! on this important new date for global HIV decriminalisation activism, where I’ll be joined on my ‘virtual sofa’ by an inspiring group of community-based expert activists – Florence Riako Anam (GNP+); HIV and human rights consultant, Michaela Clayton; Mikhail Golichenko (HIV Legal Network); and Andy Tapia and Kerry Thomas (SERO Project) – to explain why HIV criminalisation impacts us all, and what you can do about it.

We’ll be streaming live to YouTube and Facebook, so you’ll be able to interact with us during our Q&A session. By March 1st, Zero Discrimination Day, the show will also be available on our YouTube channel where it will be subtitled in English, allowing for automatic translation into any language.

HIV Is Not A Crime Awareness Day was the brainchild of our long-time HIV JUSTICE WORLDWIDE partner, the SERO Project’s co-Executive Director, Kamaria Laffrey. HIV Is Not A Crime Awareness Day was launched two years ago in collaboration with the Elizabeth Taylor AIDS Foundation, community activists and public policy organisations across the United States and grown in size and prominence ever since.

HIV Is Not A Crime Awareness Day takes place on 28th February for several reasons. It’s a date that bridges two major US awareness months – Black History Month in February and Women’s History Month in March. And it’s also a symbolic nod to the legacy of the late Hollywood icon and early AIDS activist, Elizabeth Taylor, who was born on 27th February.

HIV Is Not A Crime Awareness Day is an opportunity to amplify the voices of those who have been criminalised based on their HIV status; to remind people of the negative impacts of HIV criminalisation on health and rights; to celebrate the work of many individuals who are part of the growing global movement to end HIV criminalisation; and to recognise that there’s still much to do to achieve HIV JUSTICE WORLDWIDE.

You can find out what other events are taking place on and around HIV Is Not A Crime Awareness Day by visiting a dedicated Facebook page or by following the hashtag #HINACDay.

What do our HIV Justice Academy graduates think of the HIV Criminalisation Online Course?

The HIV Criminalisation Online Course is the centrepiece of our free online learning hub, the HIV Justice Academy, which launched just over a year ago.

More than 500 HIV justice advocates from around the world have since enrolled in the HIV Criminalisation Online Course. Those who have completed the course – and told us their thoughts in the end-of-course survey – are extremely positive about the experience, finding it relevant, interesting, and engaging. They especially liked the video content and personal testimonies which they tell us brought the issues to life. And we heard from both beginners and experts alike that the course was pitched right for them – no mean feat!

“Although I have been working on HIV discrimination for years, it was spectacular to refresh the memory,” wrote one. “The course met my expectations fully…now I really feel strongly equipped to continue doing my community work,” said another. “The course took a holistic approach to explaining HIV criminalisation. It lends legal, scientific, and social perspective, it also went further to touching on how I could be an advocate,” said a third.

 

One recent Academy graduate is HIV advocate and HIV criminalisation survivor, Lashanda Salinas, from the US state of Tennessee. She told us that the HIV Criminalisation Online Course “helped me learn things that I didn’t know, including how people are criminalised in other countries.” She also tells us that she found the course’s comprehensive Glossary and the Academy’s Resource Library “amazing and helpful”.

Like all the advocacy tools and resources contained within the HIV Justice Academy, the HIV Criminalisation Online Course is free to all, and available in English, French, Russian and Spanish.

The course can be done at your own pace, and you will receive a certificate of completion once you have passed the end-of-course test. 

We’re delighted that Lashanda and all the other graduates of the HIV Justice Academy’s HIV Criminalisation Online Course have learned new information and gained new skills as we work together to achieve HIV justice.

Do you know someone who might benefit from the HIV Criminalisation Online Course, or the other resources in the HIV Justice Academy – our Action Toolkits and Resource Library? Why not share this link with them today: academy.hivjustice.net

New HIV Justice Academy content: Lessons from the Central African Republic’s HIV law reform success

In the mid-2000s, many countries across Africa adopted HIV laws. Many of these laws contained important protections covering discrimination, privacy, and access to medications. Unfortunately, they also included overly broad and ill-informed HIV criminalisation provisions.

The Central Africa Republic (CAR) adopted an HIV law in 2006 which not only criminalised HIV non-disclosure, exposure or transmission, it also required people living with HIV to undergo treatment as prescribed by a doctor and engage in protected sex and an obligation to disclose their HIV-positive status to sexual partners.

Given the significant problems with these aspects of the law, multiple law reform attempts were made but none were successful until a new law – Law 22-016 on HIV and AIDS in the Central African Republic – was finally enacted on 18 November 2022.

How did it happen? What changed? Why was the law finally reformed?

Christian Tshimbalanga is a lawyer from the Democratic Republic of Congo with many years’ experience working on human rights and HIV in Africa. Through his work with UNAIDS, Christian provided critical support to the law reform process following it through until Parliament voted on the law. Cécile Kazatchkine (Senior Policy Analyst at the HIV Legal Network) asked Christian to share lessons learned to help others working to reform problematic HIV laws.

Their 25 minute, French-language audio conversation is now available as an additional case study in Chapter 5 of the HIV Justice Academy’s free HIV Criminalisation Online Course: How to advocate against HIV criminalisation. A translated transcript of the conversation is also available in the English, Spanish and Russian version of the course.

Christian’s role was to accompany the process until the law was voted on in Parliament. Several elements of Christian’s account stood out for us:

  • In his role as an UNAIDS representative and technical partner, Christian was able to devote significant time to the law reform process, monitoring what was happening and pushing the bill through each stage of the process. Having a dedicated person on the ground to accompany the legislative process on a day-to-day basis was critical to the success.
  • Civil society was a key partner. The Central African Network of People Living with HIV (RECAPEV) and the Central African Network on Ethics and Rights (RCED) pushed hard for the law to be revised. UNAIDS provided them with a small amount of financial support which enabled them to increase their capacity to sustain this advocacy.
  • Local partners and international organisations were also partners in the law reform efforts, including the National AIDS Council (CNLS), the Ministry of Health and the Minister of Justice, as well as UNDP, UNAIDS, and the French Red Cross (the principal recipient of Global Fund funding in CAR).
  • A memorandum outlining the new bill was drafted by various stakeholders including civil society. It informed parliamentarians about the relevant public health and human rights issues and the scientific evidence related to HIV.
  • Following the example of a previous forum in Madagascar on a draft law on sexual and reproductive health, a forum was organised for (primarily male) parliamentarians and their (female) spouses. Because issues of this intimate nature are often discussed in the home, involving spouses was strategic. Several people living with HIV opened the forum by talking about their lived realities and the persistence of HIV-related stigma and discrimination in CAR.

While worthy of celebration, the new legislation is not a complete victory. It does not fully decriminalise HIV but it does provide a much narrower definition of the prohibited conduct. Under the 2006 law, a person living with HIV could be prosecuted simply for HIV ‘exposure’ without neither intent nor transmission. The 2022 Act criminalises “intentional transmission of the virus,” defined as, inter alia, the fact that a person who knows his or her status intentionally transmits the virus through unprotected sexual relations without disclosing his or her seropositivity. A list of circumstances where the criminal law should not be applied is also included (e.g., in the case of transmission of the virus from a mother to her child).

For more information on the 2022 Act, see the HIV Justice Network’s Global HIV Criminalisation Database.

To enrol in the HIV Criminalisation Online Course, visit the HIV Justice Academy and sign up.  It’s free!

  

 

 

 

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.

HIV criminalisation highlights at AIDS 2022

The 24th international AIDS conference (AIDS 2022) held in Montreal and virtually between 29 July and 2 August integrated HIV criminalisation throughout multiple sessions – both in the main conference and during pre-conferences, satellites and in the Global Village.

Australian activist, lawyer, Track F rapporteur – and HJN Supervisory Board member – Paul Kidd has provided a thorough overview of many of these sessions in this Twitter thread, which can also be read as a single blog entry here.

Two major campaigns were launched at the conference – one global, and one focused on Canada.

GNP+ and HJN joined with networks representing young people, women, the LGBTI+ community, sex workers and people who use drugs to launch the “Not A Criminal” Campaign to decriminalise HIV non-disclosure, exposure and transmission; same-sex relationships; sex work and drug use. 

As part of the “Not A Criminal” Campaign, we are demanding countries remove bad laws and replace them with evidence-based legislation to protect our communities from criminalisation, discrimination and gender-based violence, and support the creation of independent human rights institutions. Additionally, the campaign calls on United Nations agencies and donors to develop strong, coordinated, and high-profile mechanisms to monitor progress on these member states’ commitments.

“Far from being a legitimate public health tool, criminalisation of our behaviours, choices and identities is about the enforcement of an oppressive morality through policing our bodily autonomy,” HIV Justice Network’s Executive Director Edwin J Bernard said in a press release announcing the campaign. “This punishment of our vulnerability also means we won’t be able to end the HIV epidemic by 2030.” 

The Canadian Coalition to Reform HIV Criminalization (CCRHC) made the most of the spotlight on Canada during the conference and launched its second Community Consensus Statement.  This Statement calls on the Canadian government to change the Criminal Code to limit HIV criminalisation only to very rare cases of intentional transmission using appropriate existing criminal statutes. Canada’s Justice Minister, David Lametti has since announced plans to launch a consultation this October on the criminal legal system’s overly draconian response to HIV non-disclosure.

However, the biggest – and most welcome – surprise of the conference was the recipient of the Elizabeth Taylor Legacy Award which was presented during Saturday’s prime session on HIV and Human Rights. Previous recipients have included Nancy Pelosi, Sharon Stone, Whoopi Goldberg, Michael Jackson and Elton John.

This year’s Elizabeth Taylor Legacy Award was presented posthumously to the late Rosemary Namubiru – recognising her extraordinary contribution to raising awareness of the injustice of HIV criminalisation.

Lillian Mworeko of the International Community of Women Living with HIV – East Africa (ICW-EA) received the award on behalf of Rosemary’s family. Rosemary’s daughter had planned to be there, but – like many Africans – was denied a visa.

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

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

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

Ultimately, Mwayi’s Story is about HIV justice!

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

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

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

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

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

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

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

New report shows how women living with HIV are leading the response against HIV criminalisation in the EECA region

A new report produced by the Eurasian Women’s Network on AIDS with the Global Network of People Living with HIV on behalf of HIV JUSTICE WORLDWIDE, illustrates how women living with HIV, who are disproportionally impacted by HIV criminalisation across the Eastern Europe and Central Asia (EECA) region, have also been the leaders in research, advocacy and activism against it. The report is now available in English after being originally published in Russian in January.

The report illustrates how HIV criminalisation and gender inequality are intimately and inextricably linked. By highlighting prosecution data from Belarus, Kazakhstan, Russia and Ukraine disaggregated by sex, the report shows how the burden of HIV criminalisation is falling upon women.

The report also includes some heart-breaking personal stories including that of a woman in Russia who was prosecuted for breastfeeding her baby, as well as several women in Russia blackmailed by former partners who threatened to report them for alleged HIV exposure as a way to control, coerce, or abuse them.

The evidence provided in the report clearly demonstrates that HIV criminalisation not only fails to protect women from HIV, but worsens their status in society, making them even more susceptible to violence and structural inequalities due to the way their HIV-positive status is framed by the criminal law.

The report goes on to explore how women living with HIV in the region are vulnerable to a range of economic consequences including loss of property, as well as ostracism and discrimination in their communities, including being separated from their children, because:

  • Women living with HIV’s reproductive and maternal choices are controlled by, and can be abused by, the state.
  • Women living with HIV in partnerships with HIV-negative men can be threatened with prosecution, or be prosecuted, even if there has been prior disclosure and consent to the ‘risk’ and even when condoms were used or the woman had an undetectable viral load.
  • Confidential medical information can be illegally shared with law enforcement agencies.

The report also shows a direct connection between HIV criminalisation and other forms of criminalisation – notably the use and possession of drugs, and of sex work – that exacerbate the burden of discrimination, the violation of rights, and violence experienced by women living with HIV in the region.

Despite the difficult picture painted, the report provides hope, however.

It is the mobilisation of the women’s community and the meaningful participation of HIV-positive women and their allies in advocacy for law reform, rights protections – and in the preparation of alternative reports to UN Committees such as the Committee on the Elimination of Discrimination against Women (CEDAW) – that are making a real difference in the fight against HIV criminalisation in the region.

Read the report in English or Russian.

In memoriam: Rosemary Namubiru
HIV criminalisation survivor

Our thoughts this week are with the family and friends of Rosemary Namubiru who passed away last weekend in Kampala, Uganda.

Rosemary was a dedicated nurse as well as a mother and grandmother – and a courageous HIV criminalisation survivor. In 2016, at our Beyond Blame pre-conference to AIDS 2016 in Durban, South Africa, she spoke with great dignity about her horribly unjust experiences at the hands of the criminal legal system and media.

In January 2014, Rosemary was wrongfully accused of intentionally exposing a child to HIV while administering an injection. The child did not acquire HIV. However, the accusations created a media frenzy at a time when Uganda was discussing whether to enact the HIV Prevention and Control Act that, amongst a number of problematic provisions, allows for stringent punishments for the vague ‘crimes’ of attempted and intentional HIV transmission.

The inflammatory media coverage, which included showing her arrest live on television, meant that she was found guilty in the court of public opinion long before her trial, singled out and vilified in the press because of her HIV-positive status.

Originally charged with attempted murder, she was eventually convicted of criminal negligence. However, on appeal, the judge found that her initial three-year sentence was excessive and ordered her release after she served 10 months in prison.

Rosemary was jailed a week after the HIV Prevention and Control Act was passed by parliament. The problematic provisions in the law are currently being challenged as unconstitutional.

Rosemary was supported at the time by several advocacy and human rights organisations including the International Community of Women Living with HIV, Eastern Africa (ICWEA), Uganda Network on Law, Ethics and HIV/AIDS (UGANET), The National Forum of People Living with HIV in Uganda (NAFOPHANU) and AIDS-Free World. 

Following her release, in a meeting arranged by AIDS-Free World, media editors finally heard her side of the story and apologised to her. ICWEA continued to support Rosemary following her release, and remained in touch until her death.

Rosemary at AIDS 2016. Photo: ABC Radio

In 2017, Rosemary wrote about her experiences for the International AIDS Society, of which she was member.

This experience has totally changed my life. My self-esteem is gone and this has tarnished more than 30 years in the nursing profession, which I loved so much. I still struggle to overcome that fateful day when I woke up in the morning to go and save lives, only to be beaten down by the world.

I now know first-hand that stigma, especially among healthcare workers, is real. I’ve lost everything. I had a job, I was the breadwinner for my family, and I belonged to a community. I would give anything to be able to go back to my old self. I still need support to regain my strength, start generating an income again, and feed my family.

It is my hope that by telling my story it will show the real struggle we face against stigma and criminalisation. I saw it all, I faced it all, and I don’t want anybody else to go through it. Together, we need to fight for others who are experiencing these acts of injustice.

 

UPDATE JULY 2022

In July 2022, Rosemary was posthumously awarded the Elizabeth Taylor Legacy Award at AIDS 2022 in Montreal.

Previous recipients include Sharon Stone, Whoopi Goldberg and Elton John.

The award recognised her extraordinary contribution to raising awareness of the injustice of HIV criminalisation. 

Lillian Mworeko of the International Community of Women Living with HIV – East Africa (ICW-EA) received the award on behalf of Rosemary’s family.

US: Women living with HIV at the forefront of the fight against HIV criminalisation

Ending HIV Criminalization Starts With Me

Tiffany Moore had a panic attack at a Tennessee playground. That’s how her 2021 ended.

All she’d wanted was to give her 8-year-old daughter the gentle childhood she’d never had. By age 10, Moore had for years been strapped down repeatedly in mental health wards and “pumped full of drugs” in different hospitals. That was in addition to the abuse she’d experienced at home. Half a decade later, she would be on the streets, surviving through work with sex traffickers and pimps. At age 10, she says, she didn’t expect to see adulthood. Now, as a mother, she was determined her daughter would grow up enjoying her childhood experiences, including afternoons on swings and slides with her mommy.

But until December 2021, when a change in Tennessee law that she fought for went into effect, Moore was legally forbidden from visiting a playground. That’s because at 21, she was convicted of aggravated prostitution—the aggravation being that she’d acquired HIV during a rape. And even though she did not transmit HIV to anyone, Moore spent 20 years on Tennessee’s sex offender registry as a result of her status.

Within weeks of her removal from the registry, Moore was at a playground surrounded by children, and every fiber in her body told her to flee, that she was one call to the police away from being separated from her daughter.

“They’ve instilled for 20 years that you’re a danger to children and your child. You can’t go here; you can’t go there. You can’t be here; you can’t be there,” she says. “I just know—I know I have a lot of pieces to pick up.”

She’s not alone. Though the public face of HIV criminalization laws has been primarily gay men—particularly gay Black men—recent data show that such legislation also targets Black women.

In particular, research conducted by the Williams Institute at the University of California at Los Angeles has found that in California, for instance, Black women make up 3% of the population and 4% of people living with HIV but 22% of people prosecuted under that state’s old HIV criminalization law.

In Georgia, Black women make up 17% of the population and 18% of those living with HIV but fully half of people prosecuted under that state’s HIV criminalization laws. In Kentucky, which has a law similar to Tennessee’s, 32 people have been arrested on HIV criminalization charges. All but one of those charges was associated with sex work. In that state, those arrested have mostly been white women. According to an article in a Tennessee newspaper, by 2009, 38 people besides Moore had been arrested under the aggravated prostitution charge.

“The image we have around HIV criminalization laws maybe is of a gay cisgender man who doesn’t disclose his status to a sex partner,” says Nathan Cisneros, MS, the Williams Institute’s HIV criminalization analyst and the coauthor of the Kentucky study as well as a forthcoming report on Tennessee’s laws.

“What we find in states that have prostitution-specific HIV laws, though, is that sex work ends up taking on a substantial minority, sometimes a majority and sometimes the overwhelming majority of enforcement actions. And those primarily affect women,” he says.

Because arrest records reflect someone’s assigned gender at birth and not their preferred gender, it’s unclear how many of those arrested are women of transgender experience living with HIV, but other data suggest that this group is overrepresented among sex workers nationwide.

Yet women with HIV aren’t just the target of these laws—they are also fighting them, forming coalitions, writing legislation and, like Moore, testifying about the science and impact of the laws to effect change.

Today, 30 states have statutes specifically prosecuting people living with HIV for real or imagined crimes related to HIV transmission or exposure, according to The Center for HIV Law and Policy.

The list of potential crimes reads like an HIV stigma fever dream. In some instances, people with HIV can be arrested for allegedly not telling a partner they are living with the virus—even if they are taking HIV medications and are undetectable, which eliminates the risk of transmitting it to a partner.

They can be prosecuted even if they did tell the partner they were living with HIV but their partner tells the police that they didn’t. In other instances, people living with HIV can be arrested for exposing others to bodily fluids, including via spitting and biting, acts that don’t transmit HIV. Yet other laws prosecute syringe sharing among people living with HIV who inject drugs, and still more criminalize even semen donation by those who are HIV positive and want to become parents.

In addition, nine states have so-called sentence enhancements that can take a preexisting charge unrelated to HIV and increase prison time and penalties for people living with the virus. Six states may require people living with HIV who are found guilty to register as sex offenders.

The states that specifically increase the severity of penalties for people involved in sex work primarily impact women living with HIV. In Tennessee, where Moore lives and served time, a sex work charge alone is a misdemeanor, punishable by a fine. But add in the HIV charge and suddenly a woman is facing a felony, punishable by years in prison. That conviction also requires registration as a sex offender, with the heightened punishment of being classified as a violent offender.

“It makes it difficult to get housing and stable employment, to receive certain benefits, to vote in elections,” Cisneros says. “And of course, if you have children, it creates all these other terrible complications. You can’t pick your child up from school. You can’t visit them at the playground. You can’t have your children’s friends over for a sleepover.”

From the beginning, Moore’s experience of living with hiv was intertwined with incarceration. When she was arrested for sex work in March 2002, the state of Tennessee also required her to get an HIV test. That’s when she found out she was living with the virus.

But she wasn’t allowed a private moment to process it. Instead, when court staff read out the charges at her arraignment, “my status was read out loud in court,” she remembers. For her, she says, that was the “initial attack” in a yearslong journey through the court system.

She wasn’t offered care or services. She simply left jail and went back to her former life. She evaded the public health workers who were circulating her name and photo among the traffickers who could use it to hurt her. She was 20, not even legally able to drink. To cope, she’d been cutting herself for years. When that failed to stop the terror and flashbacks, she turned to crack.

“That was my Prozac,” she says. “My entire left wrist is cut up from my coping skills. [Using drugs] was the way to not cut myself. That was the only way I knew to keep myself safe.”

Now that she knew her HIV status, future arrests carried with them the extra weight of the criminalization statute. By August 2002, she’d been arrested again and could either stand trial, which could result in a 15-year prison term, or she could plead guilty to the charges and accept a four-year sentence with no possibility of parole and be added to the sex offender registry as a violent offender. No one had acquired HIV from her. She hadn’t even been engaged in sex work when the arrest happened. She’d just been loitering in a prostitution zone while living with HIV.

That began what would eventually total eight and a half years behind bars, off and on—always being released between 11 p.m. and 2 a.m., always finding johns waiting for her and always finding that drug treatment centers couldn’t take her because of her HIV diagnosis or her status as a registered sex offender. Halfway houses were out of the question—the sex offender registry again. It was maddening, Moore says now. She wanted to get off the streets, but the criminal code kept her stuck.

One thing did change during this time. She started on HIV meds in prison, at first on drugs that made her sick every day. About three years into her first term, she had an undetectable viral load, which means she couldn’t transmit the virus. But that didn’t stop the arrests from coming.

“I was always arrested before the medication ran out,” she says, so her treatment wasn’t interrupted.

In the Kentucky report from the Williams Institute, Cisneros and colleagues found that most of the arrests were made on the streets or in parking garages. At least 15% of arrests were “almost certainly for conduct that did not involve sex work. Indeed, arrests for allegations of sex work do not need to include actual sex acts.”

In 2011, Moore left prison for the last time. She finally found a treatment center that would accept her despite her status on the sex offender registry. She quit drugs. She started working with an HIV service organization and for the first time began addressing her posttraumatic stress disorder. Importantly, she finally connected with others living with HIV through the Sero Project, a group of people with the virus who are working to change criminalization laws.

And, almost as quickly, she started working to modernize Tennessee’s HIV laws. By 2015, she was also a new mom. What’s more, for the first time, she had her own apartment, a car and a job.

“I started to realize,” Moore says, “that what was done to me wasn’t right.”

Again, moore wasn’t alone. women and nonbinary people living with HIV have been working along with gay men to guide the decades-long effort to reform HIV criminalization laws.

Whether it’s Tami Haught, who was key to getting Iowa to remove people living with HIV from the sex offender registry in 2014, or Barb Cardell, who advocated successfully in Colorado for the elimination of mandatory HIV testing for people arrested for sex work and the removal of felony charges from someone living with HIV convicted of sex work, or Naina Khanna and other members of Positive Women’s Network–USA, who worked to reduce sex work charges for women with HIV from felonies to misdemeanors, women living with HIV have been guiding the movement against HIV criminalization for years.

And that doesn’t even include advocates living in states that have yet to reform their laws, like Indiana, Georgia and Ohio.

So in 2015, when Moore testified before the Tennessee Statehouse to advocate for people placed on the sex offender registry to be able to have themselves removed if they had been sex trafficked, raped or abused, she was part of a bigger sisterhood. But it came at a price. She went back to her old coping mechanism. She relapsed. It was the first time, she says, that she knew what it was like to lose everything because “before, I had nothing.”

In the last seven years, though, Moore has held on to her recovery with both hands.

“I grew up,” she says. “It was like, literally, wisdom overnight.”

Now, she’s stepping into advocacy again. She is part of a complaint filed by The Center for HIV Law and Policy asking the Department of Justice to investigate HIV criminal statutes in Tennessee and Ohio. And it looks like the tide is turning.

In 2016, the Association of Nurses in AIDS Care released the first clinical guidelines on addressing HIV criminalization, and the American Psychological Association officially came out against HIV criminalization laws. This was followed by a consensus statement issued in 2018 by the world’s premier HIV scientists and clinicians arguing that laws should be revised to reflect the actual science of HIV transmission.

The following year, the American Medical Association came out against the laws. Now, the Centers for Disease Control and Prevention’s website has a page dedicated to how HIV criminalization laws are inconsistent with the national effort to reduce new HIV transmissions by 90% by 2030.

For Moore, being removed from the sex offender registry at the end of 2021 was bittersweet. The aftereffects linger, she says, and she still thinks about how Tennessee’s law might be different had she been able to tolerate “the uncomfortable second” that comes with the overwhelming urge to hide in just one more inhalation on a crack pipe.

As written, the law requires people seeking removal from the list to prove that they were abused, raped or otherwise sex trafficked in order to gain their freedom. Courts can require trials that force women to come up with proof of the abuse.

Now, Moore says she’s on a new healing journey, with the registry behind her. She will continue to pick through the traumatic effects of surviving her childhood and living with the stigma of the registry. Still, when she sees her daughter playing in her own room, surrounded by all the things she didn’t have growing up, in an apartment Moore pays for with a job she selected, with a car she owns parked outside, she says a sense of peace and happiness comes over her.

“I just want her to be a kid,” she says. “There’s so much time for her heart to be broken by the world we live in right now. I just want her to play with slime and dolls.”