The HIV Justice Network (HJN) is two years into our 2022–2026 Strategic Plan, prompting a mid-term review to evaluate its relevance, coherence, and adaptability.
Earlier this year, we worked with a team of experienced consultants utilising an ‘appreciative inquiry’ framework to undertake a mid-term review of our strategy.
We reached out to some of our key stakeholders – our Global Advisory Panel, our HIV JUSTICE WORLDWIDE coalition members, external partners and current and potential donors to:
Assess our strategy’s relevance to the HIV response.
Evaluate coherence between our work and our strategic goals.
Identify strengths to build upon and areas needing adjustment.
Offer guidance for refining the strategy.
Highlight the significance of our contributions to the HIV sector.
The review reaffirmed the relevance and coherence of our strategy while identifying opportunities to deepen our impact through enhanced intersectionality, expanded advocacy, and stronger global networks.
Key Findings
Signature Strengths
HJN plays a key role in addressing punitive laws and policies that impact people living with HIV, a unique focus within the broader HIV response. Stakeholders praised our clarity of purpose and strategic focus, positioning us as a global leader in this area.
Specific strengths include:
Real-Time Monitoring: Responsive to the evolving legal and social landscape.
Innovative Projects: Our learning / training platform, the HIV Justice Academy enhances our reach and relevance.
Intersectionality: Connects our advocacy with broader social justice movements, supported by multilingual outputs.
Coherence
Our work aligns strongly with our strategic goals, as outlined in our Theory of Change. Respondents highlighted:
A well-defined focus on HIV criminalisation.
Clear articulation of goals and mission.
Diverse global representation within the HIV JUSTICE WORLDWIDE movement that we co-ordinate.
Areas for Consideration
The review identified opportunities for us to enhance our impact and address emerging challenges:
Intersectionality: While stakeholders value our intersectional approach, opinions diverged on how much to expand into related areas like LGBTQ+ rights, racial justice, and public health.
Justice beyond HIV criminalisation: Respondents encouraged HJN to explore broader legal and social issues, including:
Equal rights and healthcare access.
Societal discrimination beyond the legal system.
Intersectional impacts of laws on gender and migration.
Strengthening the network:
Expand our membership, particularly in underrepresented regions like Asia.
Increase accessibility and appeal of HJN’s messaging by collaborating with youth-led communication groups.
Build alliances with broader social justice movements (e.g., gender rights).
Funding Diversification: While HJN has secured some new funding streams, we are over-reliant on one or two funders: stakeholders recommended that we engage with human rights and social justice funders beyond the HIV sector.
These findings prompted deep discussion for the HJN Team and Supervisory Board’s in-person workshop in Sitges, Spain, which took place in late September.
During the workshop we committed to maintaining our core mission – to support individuals, communities, and organisations around the world to effectively advocate against discriminatory laws, policies and practices that unjustly regulate, control, or criminalise people living with HIV – while addressing complementary issues that support our vision: a world where people living with HIV, in all our diversity, can enjoy our human rights and live in dignity, without fear of unjust criminalisation, regulation or control.
These include working on global HIV migration issues: we are about to launch a revamped version of The Global Database on HIV-Specific Travel and Residence Restrictions (hivtravel.org).
Conclusion
Our core programmatic focus ensures that we are in a good position to build upon our strengths — advocacy, training, and knowledge-sharing — while embracing innovation and inclusivity. By anchoring our activities in our mission and refining our approach based on data and feedback, HJN is well-positioned to make a meaningful, sustainable impact in the global fight against HIV-related stigma, discrimination and criminalisation.
Baroness Barker, co-chair of the APPGA, Lisa Power former Policy Director at the Terrence Higgins Trust and the first chair of the HIV Justice Network’s Supervisory Board, spoke alongside our Executive Director, Edwin J Bernard. The SERO Project’s, Kerry Thomas, an HIV criminalisation survivor and activist, appeared via video.
The event was attended by MPs and members of the House of Lords, as well as representatives of the UK and US governments, the Global Fund, UNAIDS, HIV philanthropic funders, and UK and international HIV policy organisations.
Edwin presented global and Commonwealth data, based on a briefing paper especially undertaken for the event by our policy analyst, Elliot Hatt, which demonstrated that the Commonwealth is far behind global HIV criminalisation law reform trends.
In the past five years, there were more adoptions of HIV criminalisation laws than there were repeals or reforms in the Commonwealth, whilst globally this was reversed. Notably, the United States – formerly a world leader and exporter of HIV criminalisation – was now a world leader in ending it.
“It’s time for the UK to do the same, domestically, and throughout the Commonwealth,” he said.
UPDATE 22nd March: The Parliamentary event and our Commonwealth analysis led to questions being asked in Parliament by APPGA co-chair, Florence Eshalomi MP.
Laws must follow science. Especially where someone living with HIV on treatment cannot pass it on. pic.twitter.com/tggZs5NaNE
— APPG on HIV, AIDS & Sexual Health (@APPG_HIV_AIDS) March 18, 2024
To ask the Minister of State, Foreign, Commonwealth and Development Office:
What steps he is taking to help encourage the repeal of HIV specific laws in the 20 jurisdictions in the Commonwealth that still have them.
Whether his Department is providing support to (a) the HIV Justice Network and (b) other organisations working to repeal HIV-specific laws globally.
These questions were answered by Andrew Mitchell MP Minister of State for Development and Africa with the same answer for both questions:
Addressing stigma, discrimination and criminalisation is critical to ensuring equality of access to HIV prevention, testing and treatment services and to achieving progress in the global HIV response.
The UK is a champion of human rights around the world and we are committed to the principle of non-discrimination on any grounds, including on the basis of sexual orientation or gender identity. The UK’s network of over 280 Diplomatic Missions monitor human rights in host countries.
At the UN High Level Meeting on HIV in June 2021, the UK worked hard to secure the highest level of commitment from our global partners and garner support for the ambitious, rights-based Global AIDS Strategy 2021-2026, so the world has the best chance of meeting the 2030 goal to end AIDS. We also endorse the Global Fund’s 2023-2028 Strategy, with a focus on addressing inequities and structural drivers of HIV infection and AIDS-related deaths including barriers to services due to stigma, discrimination and criminalisation.
Our funding to the Robert Carr Fund and to UNAIDS helps to support legal and policy reform to combat stigma, discrimination and criminalisation, and to improve access to HIV services for those most at risk, as well as supporting civil society and grassroots organisations to challenge harmful policies and attitudes that exclude minorities and put them at greater risk of HIV infection and increase access to services for these groups.
We are grateful to the UK’s leadership, and its support of the Robert Carr Fund – which funds much of our work, and that of the HIV JUSTICE WORLDWIDE coalition – which is currently seeking replenishment for the next funding round, 2025-7, and we hope that the UK will be the first to commit to supporting the Fund once again.
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).
Last week, Zimbabwe’s parliament finally agreed to repeal the country’s HIV-specific criminal law, section 79 of the Criminal Code. The law which contained the provision to repeal section 79 – the Marriages Act – was originally gazetted in July 2019. It will now be signed into law by the president.
The significance of this cannot be underestimated. Zimbabwe becomes only the second country on the African continent to fully repeal its HIV-specific criminal law after the Democratic Republic of Congo repealed its law in 2018.
Although there have been remarkable advocacy successes elsewhere on the continent in preventing an HIV-specific criminal law being enacted in Malawi in 2017 and the suspension of one of Kenya’s two HIV-specific criminal laws on the grounds of unconstitutionality in 2015, it is rare for a sitting parliament to decide to completely repeal an HIV-specific criminal law.
That it did so is testament to a multi-year, multi-stakeholder campaign that began with civil society advocates sensitising communities and parliamentarians, notably the Honorable Dr Ruth Labode, Chairperson of Parliamentary Portfolio Committee on Health and Child Care, who began pushing for a change in the law in 2018 having previously been in favour of the provision in order to protect her female constituents.
However, after attending a number of meetings, notably a November 2018 Symposium convened by Zimbabwe Lawyers for Human Rights and HIV JUSTICE WORLDWIDE partners, ARASA and SALC, along with other civil society organisations, she began to appreciate that HIV criminalisation does not, in fact protect women, but actually harms them.
We all know very well that in Zimbabwe and the world-over, we do not have diagnostic equipment which can tell us who gave HIV to the other and at what time. There is an assumption that whoever has manifested the disease first is the one who transmitted the virus. It can be anybody and it could be the other way round. If you are a woman and suddenly you find yourself positive, you will not tell your partner because of this law yet if the law was not there you would tell your partner and go and access ARVs to live happily ever after.
Hon Dr Ruth Labode, 2018
Zimbabwe was, in fact, the first African country to enact an HIV-specific criminal law, including it in the Sexual Offences Act of 2001. The law, which was supported by women’s rights groups who sought to address violence against women, made a criminal of anyone diagnosed HIV-positive who “intentionally does anything or permits the doing of anything” which (s)he “knows … will infect another person with HIV”.
The law was further amended in 2006 through the enactment of section 79 of the Zimbabwe Criminal Law (Codification and Reform) Act, 2004. The new law, erroneously titled “Deliberate transmission of HIV”, did not require HIV transmission or for an accused to have an intention to transmit HIV: only that they undertake an act that includes “a real risk or possibility” of transmitting HIV. Further, section 79 was so broad it could be applied to anyone who knows they have HIV or who realises “there is a real risk or possibility” they might have HIV. The only defence was if the HIV-negative partner knew their partner had HIV and consented.
There were many attempts before the first reported prosecution in 2008. Since then, there have been at least 18 further HIV criminalisation cases, making Zimbabwe the country with the highest known rate of HIV prosecutions in Africa.
As prosecutions continued, it became apparent that Zimbabwe’s HIV-specific criminal law did not protect women. Numerous cases accused women, including where it was likely that the accused was infected by her accuser spouse (although she was diagnosed first) and where men have made allegations as revenge for complaints about domestic violence.
The focus then turned to repealing the law, and by 2019 the campaign to repeal the law was in full swing, supported by a wide range of stakeholders – including HIV JUSTICE WORLDWIDE, the Zimbabwe Network of People Living with HIV (ZNPP+) and UNDP.
That year, Zimbabwe Lawyers for Human Rights and HIV JUSTICE WORLDWIDE published a range of policy documents aimed at different stakeholders – including people living with HIV, the media and parliamentarians – highlighting six key messages:
Section 79 is vague, overly broad and open to unjust application.
HIV criminalisation violates human rights and increases HIV stigma.
HIV criminalisation laws are unscientific.
HIV criminalisation does not prevent HIV.
HIV criminalisation is a barrier to HIV testing, treatment and prevention.
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.
HJN’s Annual Report 2020 Looking back at an “extraordinary twelve months”
Today, with the publication of our Annual Report 2020, we look back at some of the key highlights of an extraordinary twelve months and look to the future.
The report is published by HJN’s fiscal host, the HIV Justice Foundation, an independent non-profit legal entity registered in the Netherlands as Stichting HIV Justice to specifically serve as the fiscal organisation for the HIV Justice Network and other related activities.
Although 2020 was the year that COVID-19 impacted us all, HIV criminalisation was still a major issue of concern. HJN began highlighting punitive responses to this latest pandemic in our HIV Justice Weekly newsletter in March 2020, as well documenting at least 90 cases of unjust HIV criminalisation in 25 countries through our global monitoring work.
Kevin Moody, who became Chair of the Foundation’s Supervisory Board earlier this year, after joining the Board last September, said: “HJN realised major achievements last year, as outlined in our Annual Report 2020. Aside from fulfilling an essential leadership role in combatting HIV criminalisation and convening diverse partners globally, Executive Director Edwin J Bernard led the team in evaluating its strategy with an eye to remain fit for purpose in a rapidly changing environment moving forward. That this was all achieved in the context of COVID-19 speaks highly of the dedication of the team and partners to reduce unjust criminalisation of people living with HIV everywhere.”
HJN milestones
Despite the many challenges faced by our partners working in-country, and regionally, HJN continued its mission to cultivate a global community of transparency and collaboration between individuals and organisations working to address HIV criminalisation. Key milestones for 2020 included:
Throughout the year, as the lead grantee of the HIV Justice Global Consortium, funded through the Robert Carr Fund, we oversaw the distribution of small grant pots to via our partners working in Eastern Europe and Central Asia, Francophone Africa, Anglophone, and Lusophone Africa, and Latin America; and supported research in Angola and Mexico and legal interventions in Canada, Lesotho, and Zimbabwe.
Key Strengths
In the second half of 2020, we undertook a strategic review which found that HJN’s reputation amongst its stakeholders is strong, based on the expertise within the organisation, work it produces, and its leadership.
HJN has grown over the past year, taking steps to expand the team to complement our existing capacity around campaigns and communications, and finance and administration. We also expanded our governance, adding new Supervisory Board members, and convened 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 criminalisation.
Looking to the Future
Edwin J Bernard, HJN’s Executive Director, said: “Although the COVID-19 pandemic is likely to have a long-term, transformative impact on our work, our Strategic Review suggested a number of ways to leverage our expertise and broaden our reach beyond our current core focus. And so, although it has been a part of our analysis on HIV criminalisation for many years, we will be purposefully emphasising an intersectional lens in our future work.”
He added, “This means understanding and more frequently recognising where the issue of HIV criminalisation sits in relation to systemic discrimination that disadvantages people living with HIV on the basis of different, intersecting aspects of their identities, beyond solely their HIV-positive status. We anticipate this will open doors for collaborations and connections at project or funding levels with new partners across this spectrum. We look forward to sharing our new Strategic Plan, which will inform our programming and operations for 2022-2026, very shortly.”
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.
How is the Expert Consensus Statement bringing science to justice?
Authored by 20 of the world’s leading HIV scientists, and endorsed by more than 70 additional expert scientists, as well as IAPAC, IAS and UNAIDS, the Expert Consensus Statement described current evidence on HIV transmission, treatment effectiveness and forensics so that HIV-related science may be better understood in criminal law contexts.
The Expert Consensus Statement was the end result of a multi-year process developed by a partnership comprising the International AIDS Society (IAS), the International Association of Providers of AIDS Care (IAPAC), the Joint United Nations Programme on HIV/AIDS (UNAIDS) and the HIV JUSTICE WORLDWIDE Steering Committee.
The HIV Justice Network has now published an interim scoping report, written by HJN’s Senior Policy Analyst Sally Cameron, that explores the impact of the Expert Consensus Statement in the two years since its publication. It is now available in English and French (see bottom of page for download links).
The report concludes that the Expert Consensus Statement is meeting both its primary aim (to support defence arguments in HIV criminalisation cases) and its secondary aim (supporting lobbying for law and policy reform) in many jurisdictions. But it also found that the process of developing and promoting the content of the Expert Consensus Statement has delivered additional benefits that further support advocacy efforts to end HIV criminalisation.
In summary, the Expert Consensus Statement is being used to:
Assist HIV criminalisation defence arguments and strategic litigation, changing courts’ understanding of transmission risks associated with HIV and the effectiveness of modern treatments.
Shape advocacy for law and policy reform, including mobilising stakeholders to lobby for reform, delivering law and policy reform, improving legal and judicial practice, facilitating community advocates’ access to government and judicial bodies, and gaining support from public health bodies and customary and religious leaders.
Inform scientific and medical thinking, including being cited in many peer reviewed articles and in scientific and medical press, being hosted on the sites of scientific/medical/academic organisations, and being ranked the #1 JIAS article to date.
Develop stronger relationships that cross silos and advance capacity, enabling efficient and informal communications between partners to rapidly move projects forward, with Expert Consensus Statement authors supporting community organisations by assisting in defence cases, answering ad hoc questions and co-authoring abstracts, presentations and articles.
Disseminate accurate, positive messages about people living HIV and the issue of HIV criminalisation, including facilitating keynote addresses and presentations at notable conferences and meetings, and generating global mainstream, community and social media. Ultimately, interest in the Expert Consensus Statement has elevated the global conversation about HIV criminalisation, with co-ordinated messaging translating into a powerful positive narrative in many sites.
Photo: Representatives of People PLUS at the Gomel Regional Court
Our EECA hub, the Eurasian Women’s Network on AIDS (EWNA), part of the GNP+ family, found that between January 2015 and June 2017, 128 criminal cases had been prosecuted under Article 157, Belarus’ overly broad HIV-specific criminal law.
The highest number of cases in the country were reported in the Gomel region. Between 2012 and 2016, 38 cases were reported. But in the first half of 2017 alone, at least 50 cases had been filed before the courts.
The vast majority of the cases involve people in heterosexual relationships. The law is understood and applied in a way that a person living with HIV not only has a duty to disclose, but also a duty to not place another person at risk of acquiring HIV. While some cases brought to the courts involve allegations of non-disclosure, a large number of cases are between couples of different HIV status, where both parties were aware of HIV in the relationship, and the HIV-negative partner consented to sex.
Charges are laid by the state and are regardless of the partner’s desire to prosecute and regardless of whether protective measures were taken by the person living with HIV, such as using a condom or being on treatment with a low or undetectable viral load.
Cases typically commence when health care providers hear that an HIV-negative person is in a sexual relationship with a person living with HIV, or when a pregnancy is involved. In order to be charged, all that is required is for the person living with HIV should know their HIV status and be registered with the state for HIV services.
As per community reports, people living with HIV are not getting the proper treatment, care and support that they need because of the legal barriers that Article 157 creates in the lives of people living with HIV.
In practice, the law in Belarus keeps people who learn anonymously of their HIV status from accessing treatment, education and counselling because people in Belarus can know about their HIV status and not be registered. Without being formally aware of the presence of HIV, then a person can avoid is not criminally liable. When people face the threat of criminalisation, ignorance of the diagnosis of HIV can be the most effective legal protection.
Crucially, people who are not registered as living with HIV with the state do not receive antiretroviral treatment and therefore endanger themselves and their sexual partners.
Building the case against criminalisation on the ground
People PLUS is a public association representing people living with HIV in Belarus.
It provides counselling to clients/patients – helping them to “correctly” answer questions and complain against forced examination during epidemiological investigations from the Ministry of Health, as well as the Ministry of Internal Affairs. This has been a positive experience with, over the past month, two refusals to initiate criminal cases.
In the Gomel region – where the highest number of cases under Article 157 of the Criminal Code of the Republic of Belarus are being reported – People PLUS have held meetings with the heads of the Epidemiological Department – the “sources” of initiating criminal cases in the region.
An agreement was reached, that without violating guidelines (according to a Ministerial Agreement the Epidemiological Department has to send cases of transmission to the Ministry of Internal Affairs for further investigation), the people under investigation will be immediately provided with People PLUS contacts in order to obtain advice on how to protect themselves during an investigation.
As a result, there was a 40% decrease in the number of criminal prosecutions in the country (19 for the 1st quarter of 2018) and 49% for the Gomel region (12 for the first quarter of 2018), compared to 2017.
People PLUS notes that in the criminal laws of other countries there is the possibility of a person living with HIV to be released from criminal liability if they disclose and receive consent from another person and/or took appropriate measures to greatly reduce the risk of transmission. The application of this rule, as prescribed in the law, will protect the rights and interests of people living with HIV in Belarus. Though ultimately, this is not enough to counteract the damage to the HIV response caused by criminalisation.
A proposal on introducing similar amendments to Article 157 put forward by People PLUS was discussed at a recent meeting of the Parliamentarian Commission on Health, Physical Culture, Family and Youth Policy. The Ministry of Health of the Republic of Belarus sent a letter to the Parliament in support of the initiative. The Commission decided to submit it for discussion in the autumn session of the Parliament.
People PLUS have arranged a meeting with the Chairman of the Gomel Regional Court, S.M. Shevtsov, in order to reduce the number of ongoing cases and to get support to further changes in legislation.
Parliamentary hearings are expected to take place in Autumn 2018.
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