Nargis was born in Dushanbe, Tajikistan, into a large family. Life was not easy, and she was sent to a boarding school for low-income families. Her favourite subject at school was physical education, excelling at basketball and swimming. She hoped that after graduating from school in 1991 with a diploma in physical education she would continue her studies at a technical school.
However, because of unrest in the country, she couldn’t carry on with her schooling. “I cried for six months, I really wanted to continue my studies, but instead of going to a technical school, my parents married me off. I was not yet 16 years old then,” said Nargis. When she was 17 years old, she gave birth to a son; five years later, while pregnant with her second child, she learned that her husband was involved in drug trafficking, and he was sent to prison.
From that time on, Nargis had to provide for herself and her family on her own. She got a job in a casino. The earnings were good, but it was there that she started taking drugs. “I was a shy girl, so to make me feel relaxed, I used drugs. From there, I became a drug addict. I didn’t even notice how it happened,” she recalled.
She was eventually fired from her job because of her drug-taking and was forced to look for other ways to survive.
Nargis injected drugs for 14 years, but she started on opioid substitution therapy when it was made available in the country. “While I was on methadone, I was hired as a peer counsellor. I worked with drug users, with people living with HIV. I worked as a consultant in several HIV prevention projects,” said Nargis.
Nargis remained on methadone until May 2021. “Last year, I had to stop methadone because I was sent to prison and there was no methadone in prison. It was very hard, I was in the prison hospital for several months, but as a result I got off methadone and, so far, I am holding on.”
Nargis was imprisoned under Article 125 of the Criminal Code of Tajikistan, under which it is a criminal offence to infect someone with HIV or to put them at risk of HIV infection. Based on this article, law enforcement agencies initiate criminal cases against people living with HIV just on the basis of the potential threat of HIV transmission or simply just based on their HIV-positive status.
“I have been taking antiretroviral therapy since 2013. I have never interrupted it. I have an undetectable viral load. No one wrote a statement against me. I did not infect anyone. The accusation was made on the basis of a note from a man I knew, because we were dating,” Nargis said.
The legislation does not take into account the informed consent of the other sexual partner, regardless of whether there was a risk of HIV infection, or whether the person living with HIV takes precautions against HIV transmission. In addition, the legislation does not define how someone living with HIV should declare their HIV status. In effect, all people living with HIV who have sex can be held criminally liable.
Nargis explained her shame, “Law enforcement agencies called everyone, doctors, my colleagues, relatives, and told them about my HIV diagnosis, asked what kind of relationship we were in, dishonoured me.”
“Article 162 of the Health Code gives doctors the right to disclose the status of HIV-infected patients at the request of the investigating authorities, and does not contain any justification for this. Some criminal cases under part 1 of Article 125 were initiated after the HIV clinic disclosed information about HIV to law enforcement agencies. During the investigation and trial, the defendants’ right to confidentiality regarding their HIV status is not ensured, since investigators, officials, court clerks and judges can request medical information in accordance with the provisions of the Health Code without any specific conditions,” said Larisa Aleksandrova, a lawyer.
Nargis is now free, but she said that she was just lucky. “I was released under an amnesty in connection with the 30th anniversary of the republic.”
She is out of prison, but there are still dozens of other people convicted under Article 125. Now that everyone knows that she is living with HIV, Nargis is ready to fearlessly fight for the right to live, work and love, despite her HIV status.
Nargis continues to work as a volunteer peer consultant on HIV prevention. She has many plans, but the main goal that she is striving for is the revision of articles criminalizing HIV in Tajikistan.
“I always say that there should be more information about HIV, about people living with HIV, so that they don’t fear us the way they do now. Now everything has changed, there is treatment, there is prevention. An HIV diagnosis should not be a guilty verdict—it’s just a diagnosis.”
Most countries in the eastern Europe and central Asia region have criminal penalties and various types of punishment, including imprisonment, for concealing a source of HIV infection, for putting someone at risk of HIV or for transmitting HIV. HIV criminalization disproportionately affects marginalized populations, especially women. Women are more likely to find out their HIV status when accessing health care, such as for pregnancy, and are more likely to be criminalized and punished.
“We know for certain that laws that criminalize HIV are counterproductive, undermining rather than supporting efforts to prevent new HIV infections. We hope that by consolidating the efforts of governments and public organizations it will be possible to revise outdated laws in the near future, taking into account the latest data on HIV, which will allow people living with HIV, or those who are most at risk of infection, to be open in their relationships with medical organizations, to disclose their HIV status and use affordable medical services,” said Eleanora Hvazdziova, Director, a.i., of the UNAIDS Regional Support Team for Eastern Europe and Central Asia.
[Feature] It Takes More Than A Village to End HIV Criminalisation
The proverb says, “It takes a village to raise a child”. But what if a mother in the village is living with HIV, and some of the villagers stigmatise her? What if that stigma creates a situation where the mother living with HIV is unjustly criminalised because of her HIV status? Then it takes more than a village to get justice for that woman. It takes a global movement to end HIV criminalisation to sensitise and train lawyers and expert witnesses. It takes national communities of women living with HIV to support that woman following her release, and to educate the community in which she lives about HIV.
Introduction
In 2016, a Malawi court convicted a woman living with HIV of “negligently and recklessly doing an act likely to spread the infection of any disease which is dangerous to life” under section 192 of the Malawi Penal Code. She had attended a village meeting with her baby which she breastfed as usual before passing the child to her grandmother. Another woman then asked her to hold her baby. It was alleged that this child began breastfeeding briefly before the woman realised what was happening. The child’s mother then reported the incident to the police. The woman was arrested and without legal advice or representation, pleaded guilty, was convicted, and sentenced to nine months’ imprisonment with hard labour.
In addition, the accused woman was taking antiretroviral therapy. The chances of HIV transmission through even long-term breastfeeding are very low (which is why WHO guidelines recommend it when access to infant formula and clean water are limited) and the chances of transmission during the brief period the baby allegedly fed were infinitesimally small. In fact, the accused woman’s own child, who was routinely breastfed, has not acquired HIV, calling into question any suggestion that she intended to cause harm to the other woman’s child. Perversely, for a system that unjustly condemned her for risking harm to the other woman’s child, her own baby was imprisoned with her, without any arrangements for appropriate feeding and care, negating any notion that the legal system’s purpose was to protect children.
Following media reports of her initial conviction, numerous individuals and organisations – including HJN and our HIV JUSTICE WORLDWIDE partners, ARASA and SALC – became involved in the case, ultimately changing the outcome for the woman and her family, and laying the groundwork for further anti-HIV stigma advocacy and education in the region. Her story demonstrates the vital role that education, training, strong networks, and community play in the pursuit of HIV justice.
Living with HIV-related stigma
When interviewed at her home in 2019, the woman referred to as “EL” talked about her life:[1]
[1] The initials EL are used instead of her full name following a court order of anonymity to protect her privacy. The interview took place in 2019, during the village visit described later in this article.
“As kids, there were the two of us — me and my brother. My parents faced challenges raising us. Finding the basic necessities like soap and food was a tall order, let alone talking about going to school. It was difficult to get learning materials as well as proper clothes to wear at school. I worked hard in class but couldn’t get past Standard 5 at primary school. Eventually I dropped out, and my brother did the same, … My daily life was taken up doing house chores just like any other girl in the village, as well as helping my parents with farming. At 16, I got married.”
EL further described how she was diagnosed HIV-positive in 2015 after a de facto compulsory HIV test at an antenatal visit. She already had two children and was pregnant with her third. She had heard about HIV but did not know much about it. EL said that the healthcare workers provided a lot of assistance, giving her accurate information about HIV, including the importance of adhering to her antiretroviral treatment (ARVs).
EL and two of her children. Photo: Amos Gumulira/UNDP Malawi
EL said that she generally enjoyed life in her village, although at times she was subject to stigma and discrimination:
“When I went to fetch water at the community borehole, people would laugh at me, and whenever I wanted to participate in community work, you would find pockets of community members talking ill about me. Some people used to insult me, calling me names. But I persevered because my relatives, including the Village Headman himself, gave me support and always stood by my side.”
Members of EL’s family also faced discrimination. “Due to lack of information, a lot of people thought HIV was hereditary and because I was diagnosed HIV-positive, this meant that all my family members had HIV, and they were discriminated against,” EL said.
EL wonders if more could have been done to help her fight stigma. In particular, EL gained a lot of knowledge about HIV from the counselling she got when diagnosed, but perhaps she could have been better equipped with information to share with people in her community:
“A lot of people don’t know that if you adhere to ARVs, you reduce the risk of transmitting HIV to others. This information needs to be passed on to many people. There are also other issues to do with ARVs. A lot of people don’t have adequate information on the effects of ARVs and at the end of the day, they start pointing fingers at each other, giving people room to start speculating about issues to do with witchcraft.”
EL’s prosecution had repercussions for her whole village. One woman from the community explained:
“I was there and very close to where EL was sitting. Yes, she was carrying another woman’s child. This other woman had given the child to EL for safe keeping while she went to stand in a queue, but honestly speaking, I didn’t see EL breastfeed the child. I just heard some people who were sitting a distance from where we were sitting, as they started pointing accusing fingers at her.”
She said that things moved so fast that before they could think of anything to stop what she called “the rumour.” It had gotten out of hand and people started saying that EL had intentionally breastfed the child to transmit HIV.
After receiving a summons, EL voluntarily turned herself in at the police station. She was accompanied by the Village Headman (her grandfather) who wanted first-hand information about what crime she was alleged to have committed. That same day, police transferred EL to a larger town, where she was remanded for three days. At the age of 29, this was the first time that EL had ever left her village.
Days later, she appeared in court and the charge sheet was read out. EL recounted that she had not understood what was happening and could not make arguments because she had no legal representation. EL agreed with the summary of events as they were described, so she was found guilty and was imprisoned together with her youngest child.
She described life in prison as “hell”:
“After a week, my brother showed up to give me my ARVs. All this talk about a woman with HIV breastfeeding. I breastfed but I also found it tough to feed my baby while in prison because there was no provision of special food for babies. We were eating nandolo (pigeon peas) almost every day with Msima ya Mgaiwa (maize meal). And there was only one toilet for a cell of more than 50 people.”
After some time, relatives and other members of her community started visiting, giving her money she could use to buy soap and food for her baby. “When we heard from our Village Headman that she had been arrested, we were so devastated”, a woman from EL’s village explained. “We raised funds for some members to go and give her support only to learn that she had been transferred to one town, then another, but some of us did manage on several occasions to visit her and offer our support when she was in prison.”
Then, out of the blue, EL received a message that some people had come looking for her. She went to meet them: a lawyer, Wesley Mwafulirwa, and his paralegal. They explained why they were there and asked if she would like them to appeal on her behalf. She accepted enthusiastically. “I was excited but at the same time I was confused because I could not believe that I could be so lucky to have these people come to help me.”
Fighting the charges
Solicitor Wesley Mwafulirwa had volunteered to attend training to address legal barriers to prison health and human rights presented by the Southern African Litigation Centre (SALC). He travelled from Malawi to South Africa to attend the training which addressed useful regional and international mechanisms, and presented insights about legal practice and strategic litigation to support prison health and human rights, particularly for those facing heightened vulnerability to HIV and TB.
At the training, two lawyers spoke about their pro bono work. Wesley remembers one of them, Allan Maleche (Executive Director of KELIN), saying that each participant should take at least one case when they go back to their country. It was a turning point in Wesley’s career.
He had not been home long when he saw an article in the newspaper about an HIV-positive person convicted for trying to spread HIV. That person was EL.
Wesley, who lives in a small town in northern Malawi, drove for more than ten hours to get to the jail where EL was incarcerated. He explained his determination, saying “I was so fired up! I’d just come from SALC’s training … and I said, ‘I want to take up this case’.”
Wesley interviewed EL and offered to take her case pro bono. Wesley contacted SALC, who offered technical support. Their first step was to get an order for anonymity to protect EL’s identity and gain greater control over media reporting. Next, they faced an ethical question. They wanted to challenge the constitutionality of the law but that would take a long time. Because EL was in prison, they decided to undertake a criminal appeal instead. They applied for EL to be let out of custody on bail pending appeal. This is usually a difficult application to win, but they were successful and EL was released from prison.
In the appeal, the court was asked to consider whether the conviction could be justified, whether the penal provision was constitutional (arguing it was overly broad and vague), and whether the sentence was manifestly unjust. Wesley used his learnings from the SALC training to raise international principles and instruments relating to sentencing, which the court referenced and upheld. Michaela Clayton, then Executive Director of the AIDS and Rights Alliance for southern Africa (ARASA), and now a member of HJN’s Supervisory Board, provided expert testimony. Another expert witness, Dr Ruth Brand, identified through HJN’s global network, gave expert scientific evidence to show the risk of HIV transmission had been “infinitesimally small.”
The case was heard by Honourable Justice Zione Ntaba, who held that the proceedings in the trial court were irregular and “blatantly bias” against EL, compromising her right to a fair trial. Justice Ntaba found the charge sheet had been defective and therefore EL’s plea should not have been recorded as guilty. She noted the law must be sensitive to the accused’s knowledge or belief (or lack of) that HIV would be transmitted. Justice Ntaba decided the conviction could not be justified, acknowledging human rights principles against the overly broad criminalisation of HIV non-disclosure, exposure, or transmission. EL’s sentence was set aside. (The Constitutional challenge was referred to a full-member panel of the Constitutional Court although the case was not pursued.)
Notably, Justice Ntaba was a member of the African Regional Judges Forum to discuss HIV, TB and Human Rights (a process which is owned and planned by the judges and run with support from UNDP and funding from the Global Fund).
Fighting the stigma
Shortly after EL’s arrest, the Coalition of Women and Girls Living with HIV and AIDS in Malawi (COWLHA) and the Malawi branch of the International Community of Women Living with HIV/AIDS (ICW-Malawi) discussed the case at a roundtable meeting. At first, everyone was surprised and even laughed, questioning how she could have breastfed someone else’s child. They had never heard of a criminal case involving infant feeding and did not understand what they were dealing with.
During their discussions, COWLHA and ICW-Malawi agreed that the prosecution of EL was a manifestation of stigma and misinformation about HIV in the community. They learned more about the unjust measures that EL had experienced, like being imprisoned without being given a chance to be heard and not being given the chance to prepare and take her medication and things she needed to care for her child. COWLHA and ICW decided to get involved.
Representatives from COWLHA and ICW meet with members of EL’s village. Photo: COWLHA/ICW
Concerned that EL could face social and community hostility after her release, COWHLA and ICW planned a visit to the village to provide psychosocial support to EL and to work with traditional community leaders to provide community sensitisation on HIV, addressing issues of stigma and discrimination. Their efforts helped change some community members’ ideas about HIV.
The community formed two support groups— one for youth and another for adults (notably both were predominantly female groups). They have conducted numerous activities, including home visits, supporting children to go to school, helping the elderly with house chores, and they have a garden where they grow vegetables and rice. They hoped to access loans to become self-reliant. They also had a list of issues they wanted to learn more about, including preventing mother-to-child transmission, sexual and reproductive health, positive living, stigma and discrimination, and treatment literacy.
Visiting EL at home
In September 2019, a three-member team comprising Edna Tembo (Executive Director of COWLHA), Charity Mkona (ICW Board Chair), and Peter Gwazayani (media consultant), set out for EL’s village.
The team was welcomed by the Group Village Headman, who took them to EL’s house. EL recognised Edna from the work COWLHA and ICW-Malawi had done in the community previously. EL welcomed the team with a big smile.
EL and her husband looked cheerful as they laid a mat on the veranda of their house for the visitors. Her mother later joined the discussion.
EL was interested to learn that HJN wanted to write about her case and the type of interventions that had been helpful, to share the story with advocates for HIV justice around the world.
EL recounted that when she returned to the village, “most members of my community received me with happiness, particularly my relatives. The day I arrived, they were jubilant. They celebrated with songs that we normally sing during special occasions in the village.”
COWLHA ED Edna Tembo and Charity Mkona of ICW chat with EL, her husband and her mother (at far distance). Photo: COWLHA/ICW
EL lives with her husband, five children and her mother in a compound made up of three grass thatched houses. She introduced her children:
“The oldest is 13 and she goes to school, as do the second and third. The fourth, a little girl, is the child I was with in prison. She has not yet started school. And then there is this one, who I am breastfeeding. She is the fifth one. She has been tested for HIV on two occasions and will be going for the last test soon. The other two tests have come back HIV-negative.”
EL’s accuser and her family still lives in the same village which has presented some difficulties. EL said that on several occasions she had tried to greet them when they passed each other, but she had been ignored. “They don’t talk to me but from deep down in my heart, I have no grudges against them,” EL said. “I am just living my normal life,” EL says, although now she says that she would never agree to carry anybody else’s child, for any reason.
Moving beyond criminalisation
With respect to the community-level interventions, lawyer Annabel Raw, who worked at SALC during the time they supported the EL case said:
“As lawyers, we would never have thought to consider such an intervention had ICW-Malawi and COWLHA not shared their insights and been willing to support the client and her community. Their work has been so important to ensuring that meaningful justice was done to combat the actual root cause of the prosecution — stigma and discrimination — and to reconcile EL with her community.”
Engaging with the community also influenced ICW-Malawi and COWLHA’s thinking about HIV criminalisation. COWLHA’s Edna Tembo noted that:
Supporting people who have been prosecuted, particularly women, gives them power, … However, it is very important to stress that psychological support is absolutely vital for those who have been prosecuted. That includes family support, and a supportive community environment enabling acceptance of an individual accused.”
Tembo was also quick to emphasise that there is more work to be done. That work includes awareness raising and ongoing support to the community, especially to identify and train volunteers, empowering them to provide services at community level and to link them to health facilities and district offices for continued support and mentorship.
EL carries her youngest child home. Photo: Amos Gumulira/UNDP Malawi
EL described her dreams for the future:
“My wish now is to see my children progress in school so that they become productive citizens in this community and help it grow. That’s my dream. If they get educated, they will be able to stand on their own and support others. My husband is not employed and it is a challenge to get money for school fees for our children. We would love to get a loan or training to have greater knowledge of economic empowerment because we want to be self-reliant. We would then love to lease some land to grow rice to sell to pay back the loan.
“It’s also my wish to see the lives of all people in the community uplifted. We farm but on a small-scale. If we were to be supported with funds, I’d love to see the community establish big rice farms, working in groups, harvesting for consumption and for sale. In so doing, we would be able to uplift our lives for the better.”
Further Information
Learn more about Wesley’s experiences in EL’s case here and here.
Learn more about the African Regional Judges Forum here.
The full High Court judgement is available here, with a summary included here.
Read more about the successful HIV and AIDS Management Act community advocacy here.
This article is based on information provided by ICW-Malawi and COWLHA following their visits to EL’s village, and an interview with Wesley Mwafulirwa published by UNDP. HJN provided financial and logistical support for the village visits thanks to a grant provided to the HIV Justice Global Consortium from the Robert Carr Fund for civil society networks.
The Importance of Human Kindness and Connection: Sero’s Holiday Card Project
In an era where the term ‘lockdown’ is used to limit our movements, spare a thought for the many prisoners living with HIV (some of whom have been unjustly convicted under HIV criminalisation laws) who are experiencing real lockdowns and severe isolation.
With community support interventions becoming increasingly formalised, and NGOs pushed to operate in terms of strategic plans, deliverables, outputs and outcomes, Sero’s Holiday Card Project stands as a rare example of an organisation recognising the worth of a project focused solely on gestures of basic human kindness.
Last year, the project delivered Holiday cards to around 900 incarcerated people, most of whom are living with HIV. For some, it was the only mail they received all year.
So how did the Holiday Card Project come to be, has it made a difference, and how can you help this year?
Back in the 1980s and ’90s, Cindy Stine lost a lot of friends to HIV. In 1996, just before effective treatments became available, she lost a close friend who was like a son. She made a promise to him that she would continue to be involved in the AIDS response. That’s a promise she’s kept.
Cindy Stine of the Sero Project
In 2011, Cindy was serving on the board of a local LGBT centre when she invited two speakers from the fledgling Sero Project to speak at an event. The speakers were Sean Strub, Sero’s Executive Director, and Robert Suttle. Sean introduced the audience to the concept of HIV criminalisation, a new issue for most, including Cindy. Robert talked about what it means to live as an HIV criminalisation survivor, explaining that as the result of an HIV non-disclosure charge, he served six months in the Louisiana state prison and would be registered as a sex offender for 15 years. Robert showed an image of his driver’s license, with ‘sex offender’ stamped in bold red lettering: ID he has to show often and in many different circumstances.
Cindy approached Sean and Robert to let them know that she wanted to help. A few days later, Sean rang Cindy and invited her to his office where he showed her a stack of letters that Sero had received from people in prison. Sean asked Cindy if she’d volunteer to take on the task of answering the letters. She agreed.
Things could have ended there, with Cindy answering people’s individual letters, but as Cindy read those letters week after week, each letter more heart-breaking than the last, she began to really appreciate the isolation, loneliness and desperate need for connection experienced by many of those inside. She talked it over with her Sero colleagues, and they decided their efforts to build a movement against HIV criminalisation needed to expand to be more inclusive of those who were incarcerated; those directly impacted by HIV criminalisation. They decided to explore how they could support development of a prisoners’ network, starting by compiling a database of contact details of those who’d written.
As Sero grew, Cindy was employed to take on community education and other projects but her work answering prisoners’ letters continued. Cindy says of those letters, “sometimes the people writing didn’t even have access to paper, so they’d write on any scrap of paper they could find – recycled envelopes or bits of paper torn off something else. Many of those sending letters weren’t really literate but they wanted to communicate.”
As the 2015 Holiday season approached, Cindy found the letters got harder to read. “A lot of people wrote about loneliness and about their families disowning them after finding out they had HIV, or were gay, or were transgender. People felt they’d been thrown away and forgotten.” Then she had a simple thought, “Wouldn’t it be nice for them to know that they’re not alone.” Then another, “We should send Holiday cards”. She took the idea to Sean, who agreed.
By then, Cindy’s database was so large that she realised Sero would need to prioritise who got cards, focusing on those who were incarcerated as a result of HIV, or they had HIV or another debilitating illness. Cindy also wanted to ensure each person got at least three or four cards but … how to go about it? Cindy put out a call to the 900 or so people on the Sero list-serve asking if anyone was interested in writing some Holiday cards. The response was overwhelming. Many offered to help, with some asking to do 20 cards, some asking to do 200.
The Holiday Card Project has continued each year since then. People express an interest, Cindy sends them a list of first names; they write message on the cards, put them in blank envelopes and return them to Sero; Cindy sorts them, addresses them, and mails them off.
Those who write cards come from all different parts of the community, including some working in other HIV advocacy organisations, some parents of prisoners, and some people living with HIV. People are asked not to ask personal questions but to write messages of support: things like ‘hope you’re doing well’, ‘we’re thinking of you’, and ‘you’re not forgotten’. Some write about themselves, their experience living with HIV, their thoughts and prayers. Some write, ‘we’re thinking of you when we fight HIV criminalisation’.
Sero’s staff and volunteers
One group gets together and spends a day each year writing Holiday cards. People come from all over, saying it feels really good coming into a non-judgemental space and writing messages from the heart. Sometimes Sero will set up a table at a conference and invite people to write cards. Others write cards at home. People feel involved. Each step in the process has meaning: the choice of card, the choice of words, with many people sending their cards with stamps to send them on, to further support the project.
Last Holiday season, about 900 people received cards in facilities across the US, including people on death row. The responses from those who received cards is humbling. Some said, it was the only card they’d received all year, but those cards meant that they knew they were not forgotten. They couldn’t describe the feeling of hearing someone from the mailroom say, ‘You’ve got mail’. They knew that somebody out there had thought enough of them to send a card. Recently Cindy received a letter from a man who’s recently been released. He said that for the last three years he’d so looked forward to those cards as it was the only mail he got. It meant a lot that people had taken the time to write.
The project is not without its challenges. Cindy spends considerable time keeping track of people, as prisoners are often moved. There are also major issues regarding mail screening. Although Cindy has worked to build a rapport with those managing mail distribution at many of the prisons, that hasn’t guaranteed mail is always received. Mail screening rules differ from state to state, institution to institution, and the rules keep changing. Some prisons have now banned cards altogether, some won’t allow glue or glitter or coloured paper, etc. If mail is considered contraband it may be thrown out or returned to Sero. That process has at times driven Cindy to photocopy returned cards, sending the copies in the hope the person will still receive the good wishes.
The Holiday Card Project may have modest goals – to show compassion and care to those who feel abandoned, but it has delivered far more. It has made a difference to the lives of many, letting them know that there are people outside of prison ready to provide support. It has raised awareness about HIV criminalisation and provided a mechanism for people to show they care. It has also helped build trust between prisoners and Sero, a facor that has proven critical to the development of a stronger prisoners’ network and greater engagement with Sero. A stronger prisoners’ network has meant more support for those inside, and it has also resulted in other great projects, like Turn It Up, the health magazine that includes information about HIV for those in prison, largely written by people who are, or have been, incarcerated.
Some of Sero’s Holiday cards
While Sero is best known for its HIV criminalisation reform programmes, its efforts to support network building and empowerment have proven equally important. Sero operates from the belief that those most directly impacted should be at the centre of this work, which is why facilitating the creation and strengthening of networks of People Living with HIV and allies, particularly those representing key populations, remains critical and a priority.
Every year the Holiday Card Project has grown, with prisoners writing to Cindy to let her know if they’ve been moved to another facility. Others write saying, “a friend of mine got cards. Can I be put on the list?” Parents get in touch too, asking for their children to be added to the list, and also writing letters of thanks for cards received.
Still, Cindy thinks there is room for the project to grow; sending cards for holidays celebrated by other religions at other times of the year, and also considering whether cards could be sent for some non-religious events, such as Halloween or Thanksgiving. That way the project can become more inclusive and people won’t have to wait an entire year for mail. Of course, that will mean attracting more people to write cards so that more people can receive them.
If you’re interested in supporting the work of the Holiday Card Project, please contact Cindy at cindy.stine@seroproject.com, Subject – Holiday Card Project.
Watch all the videos of Beyond Blame @HIV2020 – our “perfectly executed…deftly curated, deeply informative” webshow
Earlier this month, advocates from all over the world came together for two hours to discuss the successes and challenges of the global movement to end HIV criminalisation.
All of the recordings of Beyond Blame: Challenging HIV Criminalisation for HIV JUSTICE WORLDWIDE are now available on the HIV Justice Network’s YouTube Channel.
Kene Esom, Policy Specialist: Human Rights, Law and Gender, United Nations Development Programme (UNDP)
The full-length director’s cut version – with enhanced audio and video – is now available in English as well as with the audio track of the recorded simultaneous translation in French, Spanish, Russian, and Portuguese.
“We have been being battling this fight for many years. Since the start of the HIV epidemic we as gay men, as gay women, as queers, as transgender people, as sex workers, as people using drugs, have been persecuted by the criminal law. And I’m here to say, “Enough! Enough!
We have achieved a great deal with our movement, with the HIV Justice Network. We have achieved a great deal in conscientizing law makers, law givers and the public. It is now time for us to join in unison to demand the end of these stigmatising, retrograde, unproductive, hurtful, harmful laws.
It is a long struggle we’ve engaged in. And it’s one that has hurt many of us. Some of us here today, some of us listening in, some of us who have spoken, have felt the most brutal brush of the law. They have been imprisoned, unjustly prosecuted, unjustly convicted, and unjustly sent away.
HIV is not a crime. But there is more to it. Criminalising HIV, criminalising the transmission or exposure of HIV, as many countries on my own beautiful continent Africa do, is not just stupid and retrograde. It impedes the most important message of the HIV epidemic now, which is that this epidemic is manageable. I’ve been on antiretroviral treatment now for very nearly 23 years. My viral load has been undetectable for more than 20.
We can beat this, but we have to approach this issue as public health issue. We have to approach it rationally and sensibly, and without stigma, and without targeting people, and without seeking to hurt and marginalise people.We’ve made calamitous mistakes with the misapplication of the criminal law over the last hundred years, in the so-called ‘war on drugs’. We continue to make a calamitous mistake in Africa and elsewhere by misusing the criminal law against queer people like myself. We make a huge mistake by misusing the criminal law against people with HIV.
Let us rise today and say, “Enough!”
Proudly announcing HIV Justice Network’s Global Advisory Panel
Today, the HIV Justice Network is proud to announce our Global Advisory Panel (GAP), an international expert reference group of activists, lawyers and academics – more than half of whom are openly living with HIV – from all regions of the world who are working on ending HIV and intersectional criminalisations.
Sarai Chisala-Tempelhoff, a Malawian human rights lawyer, says: “As an African woman and feminist who has been researching and exploring the interactions between law, HIV and women’s lives for almost two decades, being a member of the GAP feels like a fitting culmination of my life’s passions and goals: to keep bridging that gap between marginalised women’s lived realities and the laws that they live under.”
Members have been selected on the basis that they have specific skills, interests, and knowledge of the issues that we work on, and how this intersects with other social justice issues and movements.
Elie Balan, who works on LGBT rights in the Middle East / North Africa region says: “As a person living with HIV I have seen HIV criminalisation happen around me and to people I know, and to me it is a personal issue more than anything. I am excited to be part of the GAP to ensure such practices are ceased within my country and region.”
The GAP, co-ordinated by HJN team member, Julian Hows, has been convened to assist HJN deliver on its mission by:
Providing feedback on our current work, activities and outputs.
Being both a ‘critical friend’ as well as an ambassador for the ways that we are delivering on our mission, strategically and operationally.
Assisting us with building strategic alliances towards the common goal of ending HIV-related criminalisation around the world.
Alexander McClelland, a Canadian activist and social scientist living with HIV, says: “Being part of the GAP is vital to ensure we share globally what is happening in our respective countries, so we can learn strategies of resistance, and build a forceful collective response to help end practices of criminalisation.”
All members have indicated a willingness to serve for an initial period of two years (i.e. 1 January 2020 until 31 December 2021). In fact, the GAP has met twice – virtually – since initally coming together in January 2020, including earlier this week where information was exchanged regarding the impact of the COVID-19 pandemic on HJN’s work, and in the countries, regions and constituents served by GAP members.
Jeffry Acaba, who fights for the rights of people living with HIV in the Asia Pacific region: “HIV criminalisation continues to take place in many parts of the world and the platform that the GAP provides is vital to our collective effort to finally end this unjust and unfair policy practice. I’m honored to be contributing towards that change through the GAP.”
We very much welcome all of the GAP members, and look forward to working together to achieve HIV justice.
The current members of the Global Advisory Panel are:
From 2016 to 2019, Alexander McClelland, a researcher and Banting Postdoctoral Fellow at the University of Ottawa, spoke to 16 people across the country about their experience with Canada’s legal system and HIV non-disclosure laws. In Canada, those who do not disclose that they are HIV-positive to a sexual partner can face sexual assault charges, and if prosecuted, are mandated to appear on sexual offender registries.
Since 1989, more than 200 Canadians have been criminally prosecuted for HIV non-disclosure; in most of those cases, HIV was not transmitted, and many involve situations in which transmission was not possible—whether because their viral load was undetectable or because they used condoms. Despite reforms over the years, many HIV-positive folks remain vulnerable to criminalization.
The culmination of McClelland’s research is a new booklet, The Criminalization of HIV Non-Disclosure: Experiences of People Living with HIV in Canada. In it, McClelland features interviews with nine Canadians who were criminalized for their HIV status. They are all recent cases, with the earliest stemming back to 2000 and the latest in 2015. Below are three of those stories.
Matteo: “They didn’t know what undetectable meant”
When I met him, Matteo was still under curfew as part of the conditions of his release. His parents were his sureties—he was mandated to live with them in the suburbs. A gay white man in his early 20s, Matteo was still in college, and only allowed out of his parents’ house to attend school for the day. He only recently found out his HIV-positive status. In fact, we met on the one-year anniversary of his diagnosis. He told me about how he had used hook-up applications like Grindr and Scruff. He met a guy that way, and they had sex.
Matteo did not tell the guy his status. He had been told by his doctor that since he was virally undetectable it was impossible for him to transmit HIV. Matteo concluded that he only had to disclose his status if there was a risk of transmission: “I thought if I was taking medication I didn’t have to disclose. Apparently, that is not the case.” A few weeks later, he was at work and the police came to arrest him. Matteo was arrested in front of his staff, coworkers and customers. “I felt really shitty, like I, like I had just robbed a liquor store,” he says. “They [the police] said, ‘You know why we are here. You are being charged and arrested.’
“They read me my rights and said, ‘This is what you are being charged with—four counts of aggravated sexual assault.’” Matteo immediately spoke with duty counsel—a publicly funded lawyer for people who cannot hire their own—who told him not to speak to the police. They took him to the police station in their cruiser and into an interrogation room. After aggressively pressuring him, the “extremely intimidating” police got him to speak about his experience. “I told them a lot about myself—they didn’t know what undetectable meant, they didn’t have any knowledge on it.”
He ended up educating the detectives on the risk factors for transmission. Fundamentally, the police tasked with arresting Matteo did not know the current science behind the actual risks of HIV transmission. The police then released his picture, biometric details including his height, weight, eye and hair colour, any visible identifying marks, the charges filed against him, and his HIV-positive status. They also released a picture of Matteo as part of a public safety warning, asking his past sexual partners to come forward. The warning was widely covered in the media. As a result, it was also shared online, including on Facebook, targeting Matteo’s profile. One such negative post read, “If we still had the lash in Canada for punishment, this would be a case for its proper application.”
While talking at his place, Matteo told me more about what it was like to live under curfew at his parents’ house and the other conditions of his release. He felt constantly surveilled, isolated and depressed. He pulled out a piece of paper and read to me the more than 20 conditions of his release. Among the many conditions, he was barred from socializing in the gay community or going out to participate in social events. The condition that most bothered him was that he was mandated to contact authorities 24 hours before any potential sexual conduct, providing them with the name and contact information of the person. The police would then directly verify that the person knew Matteo’s HIV-positive status and that they consented to sex with him. “Like, who is going to want to do that? How am I going to meet anyone?” He felt extremely isolated and lonely.
Cynthia: “If I had not called the police, I would not have this charge hanging over my head”
I met Cynthia in her neighbourhood on the outskirts of a large Canadian urban centre. She told me about her move to Canada a few years earlier from a South American country. She felt that living as a transsexual woman in her home country was impossible. She feared that had she remained, she would have faced life-threatening violence.
Since moving to Canada, Cynthia had been working as a sex worker. She told me she generally had clients she liked, and she worked out of her home. She was warm and engaged when talking to me. In her late 30s, Cynthia was well-dressed and had a gentle demeanour. As we sat together drinking tea, she began telling me about how she was threatened with a charge of aggravated sexual assault. She was on anti-HIV medications, was undetectable and regularly used condoms with her clients. She knew that she was protecting them and also herself.
One of her regulars came over one night more intoxicated than was typical for him. He pulled a knife on Cynthia and raped her, holding the knife to her neck. He did not use a condom. She was terrified and called the police afterwards. During the police investigation, Cynthia told police about her HIV-positive status. Later, when speaking with the man who raped her, the police told him that he could press charges against Cynthia. She had previously not disclosed her status to the man, thinking that the use of a condom and being undetectable was more than sufficient. A few weeks later, she received a letter from a detective, stating that she was under investigation and they were considering pressing criminal charges of aggravated sexual assault. She was scared and didn’t know what to do. The man knew where she lived and had been violent toward her, and now she was potentially facing criminal charges. She told me that because she was a sex worker, her rape and assault were not being further pursued by the police. But now she was under threat of a charge of aggravated sexual assault for not disclosing her HIV status to her rapist.
After receiving the letter about the investigation from the authorities, Cynthia felt constantly surveilled, scared and worried. Moreover, now that he knew she was HIV-positive, the client who assaulted her began stalking and harassing her. She was terrified in her own neighbourhood, isolating herself and rarely venturing out. She deactivated her social media accounts because he also began posting messages, harassing her and her friends online. She was extremely fearful in her own neighbourhood but also scared to call the police again. “If I had not called them, I would not have this charge hanging over my head,” she says. She felt as though she was under constant watch, but with no means to protect herself. She knew the police were not going to help her and was worried she would face additional violence from her former client.
George: “This rape charge and HIV was worse than being a murderer in their eyes”
I met George in his apartment. He is a warm and gregarious white gay man in his late 50s, with a self-described long history of problematic prescription drug use, gambling and mental health issues. When George began a specific relationship around 10 years earlier, he initially did not tell his boyfriend about his HIV-positive status. At the time, he told me, he was himself uncertain about how HIV was transmitted. He told me that he was often depressed and in denial about aspects of his life. One day, a few months after his own diagnosis, George told me that his boyfriend came home with an HIV-positive test result from the clinic after a routine sexually transmitted infection screen. George then finally told his boyfriend his status in a letter: “There is a possibility that you may have gotten it from me, and I’m very deeply sorry for not disclosing [it to you].” His boyfriend went into a rage and went to police.
A few days later, he received a text message from his boyfriend that he was at the police station giving them his story. George immediately went to the station. “The next thing I knew, they were taking me into custody, and they said, ‘You have the right to call a lawyer,’ and they told me that ‘you are being arrested for sexual assault.’” George told me that a constable initially told him, “You’ve never had a criminal charge before. You will probably just have to stay overnight and tomorrow we’ll get your bail sorted.” But, a few hours later, the same constable came to see him and told him his charges had been elevated to attempted murder: “‘You aren’t going anywhere,’ she says, and she was right.” Due to the severity of the charge, George was denied bail even though he had no previous criminal record.
Due to the fear, shame and anxiety he experienced, George decided to plead guilty. He had never been incarcerated. The Crown Prosecutor asked for 10 years. George’s lawyer told George to plea, that he had no case because he had admitted his crimes. If he pleaded out, he would be sentenced to a lot less time incarcerated. He listened to his lawyer.
While incarcerated, George was placed in the general population with men facing all types of charges. He started facing verbal and physical harassment. Prisoners began calling him a rapist and asked why he took medication. After days of harassment, he was brutally assaulted by other prisoners. Those assaulting him said they knew he was trying to spread HIV. George said the guards watched and did nothing. (Under an institutional directive, prisoners’ charges and health status should remain confidential, and the only people with access to the information are guards.)
While in protective custody, George remained unsafe and was beaten again and again: “I went into the protective custody wing, and there are all kinds of sex offenders there and murderers and everything else like that. And when I got there, they found out my charge. So, they beat the shit out of me as well. I never fought a day in my life. I have never lifted a hand to anybody… I was on an isolated range for violent murderers and would still get harassed. You know, this rape charge and HIV was worse than being a murderer in their eyes.”
He told me that other sex offenders and murderers were left alone. But he was continually attacked for having HIV combined with a “dirty charge”—that is, aggravated sexual assault. One day, George was being harassed by another prisoner when a guard intervened. George told me he felt the guard had it out for him, and he was scared of the guard who had said demeaning things to him in the past. After the altercation with the other prisoner, George started to have a panic attack. While hyperventilating, that same guard forced George to strip naked and made him lay down on the cold concrete floor, holding him down on the floor with his boot. The guard pushed his boot into George’s chest hard and said, “I don’t touch anyone with AIDS,” as a nurse arrived to sedate George, sticking a syringe in his arm.
Ultimately, he served the rest of his sentence in administrative segregation, where he only had a concrete floor with no bed until night time. He was given just one sheet of paper and a pencil to occupy his time while locked down alone in a cell. He served approximately one year in those conditions.
Uganda: Recent case of woman, unjustly jailed for allegedly injecting a baby with HIV, highlights the need to act against HIV criminalisation
Woman Who was Wrongfully Jailed for Premeditated HIV Infection Speaks Out
“I spent two weeks in custody asking [to be released on bond], but they could not even bond me out, saying I was a non-resident. When we went to court, I asked for bail, and they refused. They refused to give me bail until they convicted me.”
By Kampala Post Reporter
On the evening of August 29, 2019, Sylvia Komuhangi walked out of the Gulu High Court premises accompanied by a female prisons security official. She had a smile plastered on her face. It was not a beaming smile. It was a restrained smile, the kind of smile that projects more relief than joy.
The 32-year-old secondary school teacher, who was wrongfully sentenced to two years in jail for injecting a baby with HIV-infected blood, walked a 50-meter stretch to the parking lot area where her lawyer, Immaculate Owomugisha waited. Komuhangi and Owomugisha shook hands, hugged and clasped their hands around each other’s waist for a while. The journalists present at court took pictures of the two, and then Owomugisha stepped back to let Komuhangi share her thoughts with the media.
With half a dozen video cameras and audio recorders in position, Komuhangi responded to the first question asking how it felt to regain her freedom after eight months in Kitgum Central prison, 805 kilometers away from her home in Rukungiri.
“I feel so happy,” she said. “It was so difficult.”
A Friendly Visit Gone Wrong
On December 27, 2018, Komuhangi was arrested and charged at Kitgum Magistrate’s Court with the offence of committing a “negligent act likely to spread disease contrary to Section 171 of the Penal Code Act of the Republic of Uganda.”
During her trial, at the Magistrate’s Court, the prosecution stated that at about 9 P.M. on December 26, 2018, Komuhangi carried the alleged victim away from her babysitter to the bedroom and then returned later, with the baby crying.
The prosecution continued that when the mother, Eunice Lakot, examined her baby, she found swellings in both armpits. She took the baby to Kitgum hospital for diagnosis, where doctors reportedly confirmed that the swellings were caused by injections. Consequently, a medical professional tested Komuhangi for HIV, and she was found positive. Next, the child was given Post-exposure Prophylaxis (PEP), an antiretroviral medication that prevents infection to anyone exposed to HIV during the first ninety-six hours. Subsequently, Komuhangi was arrested.
After regaining her freedom, Komuhangi narrated that she had traveled to Uganda’s northern region from the Kampala for a tour in late December 2018, and spent several nights at a friend’s house in Kitgum Town. After a visit to the Kidepo Valley National Park, she returned to Kitgum Town to find her friend’s home surrounded by local authorities. “We were arrested there and then,” she narrates.
“I spent two weeks in custody asking [to be released on bond], but they could not even bond me out, saying I was a non-resident. When we went to court, I asked for bail, and they refused. They refused to give me bail until they convicted me.”
The conviction was handed out by the Chief Magistrate of Kitgum, Hussein Nasur Ntalo, on Thursday, July 4th. On Komuhangi’s release, Lakot, the mother of the baby, shared that the most recent results showed that her baby is HIV negative. Lakot, nevertheless, said she was not happy with the High Court’s ruling, but the baby’s maternal grandmother, Rose Oryem, said they would not challenge the court’s decision.
Komuhangi’s story was covered by leading media houses in the country, including the Daily Monitor, the country’s leading independent media house. It caused a public uproar in a country whose laws make it a crime to “willfully and intentionally” transmit HIV and also give the legal right to medical staff to disclose a patient’s HIV status to others without his or her consent.
In fact, Komuhangi is not the first convict as a result of those laws. In 2014, a 64-year-old nurse in Kampala, Rosemary Namubiru, was accused of injecting a toddler with her HIV-positive blood in the process of administering treatment. Namubiru was put on trial amid pressure from several local and international organisations, including the Global Commission on HIV and the Law, who castigated the quality of the media reporting in the immediate aftermath of her arrest.
“The media engaged in unabashed and unverified sensationalism. Rosemary was branded a ‘killer,’ guilty of maliciously and intentionally attempting to transmit her own HIV infection to a child,” said the Commission’s statement.
“Subsequent to those allegations, the baseless rumour-mongering escalated: various news reports branded Rosemary a fiendish serial offender; a nurse who was mentally ill; a nurse without credentials…. Sadly, we’re convinced that the charge was originally laid because of the media frenzy,” added the statement.
Taking Action Against HIV Criminalization
When Komuhangi’s case hit the media headlines, it took a similar tone to that of Namubiru. As a result, it caught the eye of the Uganda Network on Ethics, Law and HIV/AIDS (UGANET), a non-governmental organisation whose goal is to advocate for the development and strengthening of an appropriate policy, legal human rights and ethical response to HIV/AIDS in Uganda.
Owomugisha, who is the UGANET head of advocacy and strategic litigation, says cases that involve HIV are not subjected to sufficient rigor, with sentiments often carrying the day at the expense of proper investigation, prosecution, and objectivity in court.
“Most convictions are based on unfair, inaccurate and overblown facts,” she says. “The media usually joins to hype up stories [and] this sensationalism crowds out good judgment, resulting in a miscarriage of justice.” Speaking particularly about Komuhangi’s case, Owomugisha said the media continued a pattern of HIV criminalization by condemning the suspect even before the initial trial.
“Several media houses were set on the loose name-calling such as “murderer and killer.” The media buzz was everywhere, including on the radio airwaves for days. This undressed Komuhangi of all dignity,” she said.
UGANET decided to offer legal representation to Komuhangi, resulting in a swift appeal against her conviction. Within two months from the first time the appeal was first lodged before the Gulu High Court, she had regained her freedom. Justice Stephen Mubiru, who handled the appeal, quashed the conviction, saying that forensic tests showed that DNA traces found on the cloth that Komuhangi used to wrap the baby belonged to her but did not contain any blood.
“I could not find any connection between her piece of cloth and the blood said to have been injected into the baby because the swelling found on the baby could have been a mere rash,” he added, according to a detailed report in the Daily Monitor newspaper.
Another of Komuhangi’s lawyers, Louis Odong, said the ruling sent a message to people who criminalize HIV victims not to engage in the practice while Owomugisha added that the court’s decisions had restored “dignity to Sylvia Komuhangi and many like her.”
“We commend the court decision for setting an example that if courts scratched below the surface news, they would realize HIV positive status alone does not equate to malicious intent,” she said.
The Executive Director of UGANET, Dora Kiconco Musinguzi, whose organisation works with 32 other HIV law and human rights groups, said the criminalization of people living with HIV, not only undermines the HIV response by compromising public health and human rights but that there is also no evidence of benefit from those laws.
“As a community of HIV actors, we remind the nation that we cannot end AIDS, or reach epidemic control with HIV criminalization coupled with heightened HIV discrimination. Human rights and dignity need to be accorded to all. We need to stop stigma and end HIV criminalization,” she stated.
Kiconco said that in light of court’s decision, the community of people living with HIV and organisations that UGANET works with recommend that the Constitutional Court should fast track the hearing of Petition No. 24 of 2016, through which their issues were presented to the country’s second-highest judicial organ for interpretation.
“More lives continue to be adversely affected by the HIV criminal law. Justice delayed is justice denied,” she added. Kiconco also called on Parliament to re-visit the HIV criminal laws with a view to law reform as “some of the laws are unfair, vague and will encourage trumped-up charges often.”
She said the law had been diverted from its original intent to create an environment where HIV is criminalized and where complications arise for persons living with HIV. The final appeal from Kiconco was directed to actors at all levels of the justice sector to increase rigor while handling HIV-related cases and to the media fraternity to exercise restraint while reporting on matters regarding the HIV criminal law.
“Our Constitution espouses a key principle – innocent until proven guilty. Abusing victims with names such as ‘monster and murderer’ is wrong. This jeopardizes their chance for a fair hearing,” she emphasized.
Canada: Justice Committee report recommends wide-ranging reforms to HIV criminalisation, including removing HIV non-disclosure from sexual assault law
Yesterday, the House of Commons Standing Committee of Justice and Human Rights released a ground-breaking report “The Criminalization of HIV Non-Disclosure in Canada” recommending that the Government of Canada works with each of the Canadian provinces and territories to end the use of sexual assault law to prosecute allegations of HIV non-disclosure.
People living with HIV currently face imprisonment for aggravated sexual assault and a lifetime designation as a sex offender for not disclosing their HIV status to sexual partners, even in cases where there is little or even zero risk of transmission. This means a person engaging in consensual sex that causes no harm, and poses little or no risk of harm, can be prosecuted and convicted like a violent rapist. We welcome the Committee’s recognition of this unjust reality and their call to end the use of sexual assault laws. We and our allies have spent many years advocating for this critical change.
The report also recommends that Canada limits HIV criminalisation to actual transmission only. The Legal Network notes:
But we must go further: criminal prosecution should be limited to cases of intentional transmission as recommended by the UN’s expert health and human rights bodies. Parliament should heed such guidance. Criminal charges and punishments are the most serious of society’s tools; their use should be limited and a measure of last resort.
However, one of the recommendations that the Legal Network takes issue with is the recommendation to broaden any new law to include other infectious diseases.
Infectious diseases are a public health issue and should be treated as such. We strongly disagree with the recommendation to extend the criminal law to other infectious diseases. We will not solve the inappropriate use of the criminal law against people living with HIV by punishing more people and more health conditions.
Currently, there is a patchwork of inconsistent approaches across each province and territory. Only three provinces — Ontario, British Columbia and Alberta — have a formal policy in place or have directed Crown prosecutors to limit prosecutions of HIV non-disclosure, and they all fall short of putting an end to unjust prosecutions.
A December 2018 federal directive to limit HIV criminalisation, which solely applies to Canada’s territories, is already having some impact — in January 2019 it led to Crown prosecutors in the Northwest Territories dropping a wrongful sexual assault charge against a man living with HIV in Yellowstone. “We followed the directive and chose not to prosecute,” said Crown attorney Alex Godfrey.
Other positive recommendations in the report include:
An immediate review of the cases of all individuals who have been convicted for not disclosing their HIV status and who would not have been prosecuted under the new standards set out in the recommendations of the Committee.
These standards must reflect “the most recent medical science regarding HIV and its modes of transmission and the criminal law should only apply when there is actual transmission having regard to the realistic possibility of transmission. At this point of time, HIV non-disclosure should never be prosecuted if (1) the infected individual has an undetectable viral load (less than 200 copies per millilitre of blood); (2) condoms are used; (3) the infected individual’s partner is on PrEP or (4) the type of sexual act (such as oral sex) is one where there is a negligible risk of transmission.”
The report also recommends that any new legislation should be drafted in consultation with “all relevant stakeholders including the HIV/AIDS community”, which the Legal Network also welcomed.
The next step is actual law reform. The report makes clear that change to the criminal law is needed. Any new legal regime must avoid the harms and stigma that have tainted the law these past 25 years.
US: Robert Suttle reflects on outdated HIV-specific criminalisation laws and the work of advocates to change them all over the US
UNDER LOUISIANA LAW, YOU CAN WIND UP WITH A $5,000 FINE AND FIVE YEARS’ JAIL TIME IF SOMEONE COMES IN CONTACT WITH YOUR SPIT — IF YOU’RE HIV POSITIVE. THESE LAWS ARE BASED ON OUTDATED SCIENCE AND MULTIPLE ORGANIZATIONS ARE WORKING TO CHANGE THEM.
Whenever Robert Suttle thinks about his time in jail, his eyes go soft, he lets out a long breath and his lips purse a bit. It’s noticeable that he — after almost a decade — still gets emotional about what put him behind bars.
In 2008, while working as an assistant clerk for the Louisiana Court of Appeals, Suttle went through a bitter breakup that resulted in a tit-for-tat trial, ending in Suttle being sentenced to six months in jail and registering as a sex offender for intentionally exposing a sexual partner to HIV. But there was no transmission of the virus.
And even though Suttle says he disclosed his status to his partner and that the sex was consensual, it didn’t matter much under Louisiana’s HIV exposure law, which states that anyone with HIV or AIDS who has unprotected sex can be tried and charged with a nonviolent felony. Offenders can be sentenced to up to 10 years in prison and must register as a sex offender in some cases.
But Louisiana’s intentional HIV exposure statute, enacted in 1987, revised in 1993 and again in 2011, is out of date and not backed by science. For example, spitting and biting are considered grounds to be charged for criminal exposure to AIDS, even though it’s impossible to transfer the virus through spit and exceedingly rare for HIV to be passed on through biting (and the risk is nonexistent if the skin isn’t broken).
What’s more, Suttle, who was diagnosed with HIV in 2002, couldn’t pass the virus on anyway. Antiretroviral treatment had made his viral load undetectable, which means the level of HIV in his blood was so low that it would’ve been impossible to transmit.
“I didn’t quite understand how it could come to this,” Suttle says. “It was being gay and HIV positive that led me to … being criminally liable.”
As more people become aware of possible criminal charges — thanks in part to localreporting on alleged offenders — some of those most at-risk are unwilling to get tested. Criminalizing one’s status has created a stigma, advocates say, which in turn can endanger whole communities.
“[People know] that if they test positive, they can get charged or arrested,” says Gina Brown, an HIV and AIDS activist in New Orleans who is HIV positive. “The laws need to change, and people in charge need to get educated.”
Across the nation, HIV transmissions have been steadily declining since the beginning of the decade. At the same time, the demographics of the disease have changed. No longer does HIV primarily affect gay men; today, those who are most at risk also include injection drug users and poor people of color, particularly in the South. Despite that shift, regulations and laws that criminalize one’s HIV status still abound, and they have roots in outdated science that has largely been debunked.
There are currently 26 states with HIV-specific criminalization laws, some of which penalize behavior regardless of whether the virus was actually transmitted. That number was higher in the 1980s and ’90s, when fear of HIV — and myths around how it spread — was rampant. Lawmakers claimed at the time that the statutes were meant to protect the general public. Instead, they have had the opposite effect: Since you can’t be prosecuted if you don’t know your status, there’s an incentive to not getting tested. Studies have also shown that HIV criminalization has little to no effect on deterring people from spreading the virus willingly, and in fact, such laws have only worsened its spread.
Nearly all of the states with the highest rates of new HIV diagnoses — in 2017, Louisiana ranked third — have HIV-specific exposure laws still on the books.
“People don’t know the collateral consequences,” says Suttle, who now works as an assistant director at Sero Project, a nonprofit that fights stigma and discrimination by focusing on HIV criminalization. “These laws hinder people from getting care.”
Suttle says the biggest obstacle is education, especially among people who still view HIV and AIDS as a death sentence.
“Education of the masses cannot be stressed enough. You can talk to anybody, and people honestly think that [people charged under HIV exposure laws] should be fully prosecuted and locked up,” Suttle says, adding that Sero Project has tried to humanize people living with HIV through anti-criminalization campaigns, lobbying and public outreach.
This year, Sero Project, in partnership with the Positive Women’s Network, launched a training academy to teach advocates how to organize and repeal state HIV criminalization laws. In South Carolina, Sero Project’s training helped establish a coalition of 50 lawmakers, advocates and nonprofits to try and change the state’s HIV criminalization laws.
“They gave us the tools to do our own work here within our community, and educate people. Now we have more and more people who are interested, because every time we get out and share with the community, we’re getting more people asking about the laws,” says Stacy Jennings, chair of the Positive Women’s Network regional chapter in South Carolina. “It’s sad that [people living with HIV] don’t know [about the laws] because they should know. Every chance we get we’re teaching them.”
As a result of Sero Project’s efforts to get communities educated on local laws, Suttle has seen a sea change in the number of people coming forward to fight the stigma around being HIV positive.
And that’s been helpful in places like Louisiana, where advocates say the need for educating and empowering people to get tested and stay healthy is dire.
“We actually have been able to get into the offices of legislators and tell them why this law is outdated and plain wrong,” says Brown, the AIDS activist. “We have some of the highest rates of HIV transmission in the country, and that won’t get better so long as there are laws that actively make people fearful of getting tested.”
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This is the third installment in NationSwell’s multimedia series “Positive in the South,” which explores the HIV crisis in the Southern U.S., and profiles the people and organizations working to alleviate it.
Welcome to BEYOND BLAME – Challenging HIV Criminalisation, live from De Balie in Amsterdam, 23 July 2018.
15:45 – 16:00 Rapporteur reports from the breakout sessions Lead rapporteur: Sally Cameron (HIV Justice Network)
16:00 – 16:30 Group discussion: Next Steps Facilitators: Naina Khanna (Positive Women’s Network – USA) and Lynette Mabote (ARASA)
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