New WHO guidance and an accompanying Lancet systematic review released today describe the role of HIV viral suppression and undetectable levels of virus in both improving individual health and halting onward HIV transmission. The guidance describes key HIV viral load thresholds and the approaches to measure levels of virus against these thresholds; for example, people living with HIV who achieve an undetectable level of virus by consistent use of antiretroviral therapy, do not transmit HIV to their sexual partner(s) and are at low risk of transmitting HIV vertically to their children. The evidence also indicates that there is negligible, or almost zero, risk of transmitting HIV when a person has a HIV viral load measurement of less than or equal to 1000 copies per mL, also commonly referred to as having a suppressed viral load.
Antiretroviral therapy continues to transform the lives of people living with HIV. People living with HIV who are diagnosed and treated early, and take their medication as prescribed, can expect to have the same health and life expectancy as their HIV-negative counterparts.
“For more than 20 years, countries all over the world have relied on WHO’s evidence-based guidelines to prevent, test for and treat HIV infection,” said Dr Tedros Adhanom Ghebreyesus, WHO Director-General. “The new guidelines we are publishing today will help countries to use powerful tools have the potential to transform the lives of millions of people living with or at risk of HIV.”
At the end of 2022, 29.8 million of the 39 million people living with HIV were taking antiretroviral treatment (which means 76% of all people living with HIV) with almost three-quarters of them (71%) living with suppressed HIV. This means that for those virally suppressed their health is well protected and they are not at risk of transmitting HIV to other people. While this is a very positive progress for adults living with HIV, viral load suppression in children living with HIV is only 46% – a reality that needs urgent attention.
Coming soon: HIV Justice Live! Episode 5: Bringing Science to Justice
Five years ago, twenty of the world’s leading HIV scientists published the ‘Expert Consensus Statement on the Science of HIV in the Context of Criminal Law’ to address the misuse of HIV science in punitive laws and prosecutions against people living with HIV for acts related to sexual activity, biting, or spitting.
More than 70 scientists from 46 countries endorsed the Expert Consensus Statement prior to its publication in the Journal of the International AIDS Society (JIAS). The Statement was launched on 25th July 2018 at AIDS 2018, with the press conference generating global media coverage.
Building upon our initial 2020 scoping report, we recently undertook further extensive research to examine the impact of the Expert Consensus Statement in the five years since its publication.
On 25th July 2023 – exactly five years to the day of the original launch – we will not only be presenting our findings at the 12th IAS Conference on HIV Science (IAS 2023), we will also be launching the five-year impact report during our live webshow, HIV Justice Live!
Hosted by HJN’s Executive Director, Edwin J Bernard, the show will include a discussion with the report’s lead author, HJN’s Senior Policy Analyst Alison Symington, as well as interviews with Malawian judge Zione Ntaba, Taiwan activist Fletcher Chui, and SALC lawyer Tambudzai Gonese-Manjonjo on the Statement’s impact.
We’ll also hear from some of the Expert Consensus Statement’s authors, including Françoise Barré-Sinoussi, Salim S Abdool Karim, Linda-Gail Bekker, Chris Beyrer, Adeeba Kamarulzaman, Benjamin Young, and Peter Godfrey-Faussett.
Ugandan lawyer and HJN Supervisory Board member Immaculate Owomugisha will also be joining us live from the IAS 2023 conference in Brisbane, Australia where she is serving as a rapporteur, to discuss the Statement’s legacy and relevance today.
There will be opportunities to let us know the impact the Expert Consensus Statement has had in your advocacy and to ask questions live, so please save the date and time.
A sobering new study from Russia undertaken by the Eurasian Women’s Network on AIDS (EWNA) has found that the majority of HIV clinicians surveyed support HIV criminalisation, with some even believing the current law should be stricter. Those who said they support decriminalisation tended to work at private clinics and were more likely not to question the HIV prevention benefit of antiretroviral therapy.
The study, Attitudes of infectious disease doctors and epidemiologists at AIDS centres towards the criminalization of HIV in the Russian Federation was published in Russian this week by EWNA with financial support from the Robert Carr Fund.
Last year, EWNA undertook an online survey to examine the attitudes of infectious disease specialists and epidemiologists working at state-run AIDS prevention and control centres, as well as other HIV clinicians, towards HIV criminalisation in Russia. They received 186 responses, of which 22 were excluded due the respondents not being HIV clinicians, and 164 responses were analysed.
Of all respondents, 50 (30.5%) worked in AIDS centres, 46 (28%) in hospitals, 34 (27%) in polyclinics, 33 (20.1%) in private clinics and 1 (0.6%) in a clinical diagnostic department. The doctors had been qualified for an average of 13.5 years, with an average 5 years’ experience in the HIV field, and saw, on average, 16 HIV patients a day. The majority worked in cities with a population of more than a million people.
A total of 115 (70.1%) respondents were aware of the content of Russia’s HIV-specific criminal law – ‘Article 122: Infection with HIV’. Infectious disease doctors and epidemiologists were more familiar with the law than doctors in other specialties, and the same was true of AIDS centre staff compared with staff at other medical institutions.
Those who were unaware of the law were provided with a brief overview of its contents before continuing the survey. You can read the full text of the law, and our analysis of its impact, at HJN’s Global HIV Criminalisation Database.
Of all the doctors surveyed, 23 (14%) reported that their patients had been prosecuted under the law, and eleven (6.7%) respondents had given evidence in court.
Most HIV clinicians surveyed supported HIV criminalisation with only a minority agreeing that the law should be completely repealed (23%), reclassified as an administrative offence (15%) or remain as is but with reduced penalties (7%).
Those working in infectious diseases or epidemiology and/or employees of state-run AIDS centres were more likely than doctors of other professions or working in private clinics to argue for a stricter law. Conversely, employees of private fee-paying clinics were more likely to be in favour of reclassifying the law as an administrative offence or abolishing the law altogether.
Notably, respondents in favour of decriminalisation were more likely to say that they were open to having a relationship with a person living with HIV.
The clinicians were also asked about their understanding of the concept of ‘Undetectable equals untransmittable’ (U=U). Only 37% wholeheartedly agreed with the concept, with another 35% agreeing but with certain caveats. Respondents opposing HIV decriminalisation more often than others considered the U=U principle to be wrong, or considered it to be generally correct, but with caveats. Of note, a recently published study found that across Russia only 45% of people with HIV currently receive antiretroviral therapy.
Russia continues to be one of most aggressive enforcers of HIV criminalisation globally with a very high number of unjust arrests, investigations and prosecutions reported each year. The study results suggest that much more work needs to be done to educate HIV clinicians about the harms of HIV criminalisation to both public health and human rights, as well as the unequivocable benefits of HIV treatment on both health and prevention.
The review summarises key developments in the history of HIV criminalisation and highlights newer research – from the last decade but especially from the last five years – on the public health and human rights impact of HIV criminalisation.
It also summarises expert guidance on the subject, especially as it reflects evolving science, also noting the health and human rights concerns about the application of phylogenetic analysis for molecular surveillance data in the context of HIV criminalisation.
It also explores the impact of HIV criminalisation on different populations – women, sex workers, gay and bisexual men and other men who have sex with men, Indigenous persons, immigrants and racial minorities.
Finally, it reviews recent significant efforts to limit the impact of HIV criminalisation most of which would have been impossible without advocacy organisations of people living with HIV and their allies.
The review concludes that HIV criminalisation…
“is inconsistent with the human rights-based response to HIV espoused in UN strategies for decades. It adds to the legal and societal burden faced by those who experience discrimination based on race, class, gender, sexual orientation and immigration status as well as criminalization of other kinds. It is enabled by laws and a criminal legal system that in many cases have not caught up with the science of HIV, deploying the machinery of the criminal law as a response to conduct posing little or even no risk of transmission. It punishes people harshly even in cases where no bodily harm can be discerned and where there has been no intent to cause harm – indeed, even in some cases where people have actively sought to eliminate or reduce the risk of others acquiring the virus. It reinforces HIV-related stigma and can discourage people from seeking health services. It is a vehicle for the misuse of phylogenetic evidence and the public health apparatus of molecular surveillance.
“Any benefits of HIV criminalization, which are hard to discern from existing research, must be weighed against the enormous costs of deepening stigma and fear among people living with HIV and of incarceration, coercion and blackmail, police investigation, criminal proceedings, media hysteria, and saddling people with criminal records, sex offender status, or deportation. The myth that HIV criminalization protects women from predatory men should give way to investment in proven measures to address gender-based poverty, violence and discrimination. Financial support for the work of networks of people living with HIV in low- and middle-income countries to document HIV criminal laws and their impact would be useful.
“At a time of reckoning on race in global health, it behooves governments to review, reform and repeal laws that exacerbate the harm that centuries of White colonialism have visited upon racial minorities and Indigenous people. Significantly reducing HIV among sex workers, people who use drugs, criminalized LGBTQI persons, migrants and prisoners remains central to the Global AIDS Strategy and would be helped by eliminating HIV criminalization. And in a time of emerging infectious diseases, HIV criminalization sets a dangerous precedent. The few but dramatic cases of attempted murder charges that have been brought for alleged HIV transmission in the context of rape in South Africa were the closest precedent for attempted murder charges brought against two men who refused quarantine after having tested positive for SARS-CoV-2 in 2020. The demonization of COVID-19 “carriers” in too many countries is at least partly a shameful legacy of HIV criminalization.”
So many harms, so little benefit: a global review of the history and harms of HIV criminalisation is available for free download from The Lancet HIV until November 22 2022 by using this link.
When law and science part ways: the criminalization of breastfeeding by women living with HIV
The HIV Justice Network (HJN) has been monitoring a disturbing phenomenon — at least 12 women living with HIV have faced criminal prosecution in relation to breastfeeding or comfort nursing.
In addition, women living with HIV have been threatened with punitive public health processes and child protection interventions for breastfeeding their children in multiple countries.
To bring this important issue to the attention of women’s health experts and advocates, HJN worked with our HIV JUSTICE WORLDWIDE partners to write a paper for a Special Collection on Women’s Health and HIV for the peer-reviewed, open access journal Therapeutic Advances in Infectious Diseases.
In “When law and science part ways: the criminalization of breastfeeding by women living with HIV,” published last week, Alison Symington (HJN’s Senior Policy Analyst), Nyasha Chingore-Munazvo (Programmes Lead, AIDS and Rights Alliance of Southern Africa) and Svitlana Moroz (Chair of the Eurasian Women’s Network on AIDS) place the criminalisation of women with HIV for breastfeeding within the context of current medical recommendations and cultural views of breastfeeding. They review the criminal cases against women living with HIV for breastfeeding around the globe, examine the injustice of these prosecutions, and provide recommendations for decriminalisation.
This Special Collection includes papers addressing a wide range of health issues impacting women with HIV. According to lead author Alison Symington, “We felt it was important to submit a paper on breastfeeding and HIV criminalisation because so few people are aware of these horrible cases. Healthcare providers have an important role to play in protecting women from punitive actions and providing them with information and support so that they can make the best decisions for themselves and their children.”
To make the paper even more widely accessible, HJN has provided translations into French, Russian and Spanish.
It is HJN’s aim to collaborate with advocates, researchers, service providers, organisations and community members around the world to raise awareness and prevent further unjust prosecutions against women living with HIV who breastfeed or comfort nurse. We are therefore grateful to both the Elizabeth Taylor AIDS Foundation and the Robert Carr Fund for their financial support for this work.
We wanted to produce a film that was authentic to the lived experience of an HIV criminalisation survivor but without making her go through the trauma of having to relive the experience by telling her story again.
HJN’s video, visuals and webshows consultant, Nicholas Feustel, who produced and directed the film, said: “Since this story is primarily about mothers and children, we decided to produce the film in the style of an illustrated children’s storybook. We searched for a female illustrator working in sub-Saharan Africa and found the wonderful Phathu Nembilwi of Phathu Designs.
“For our narrator, we found Upile Chisala, a storyteller from Malawi known for her short and powerful poems.”
The script by HJN’s Senior Policy Analyst, Alison Symington, was written in consultation with our Supervisory Board member, Sarai Chisala-Tempelhoff, a Malawian human rights lawyer and legal researcher with over 15 years of experience in women’s access to justice.
We also worked with our HIV JUSTICE WORLDWIDE partners, Southern Africa Litigation Centre (SALC) and AIDS and Rights Alliance for Southern Africa (ARASA), to ensure that the film was relevant to their ongoing advocacy in the region. In fact, Mwayi’s Story had its world premiere last week on Zambia’s Diamond TV, in anticipation of a verdict in a similar breastfeeding case.
The film will be shown in a number of forums over the next few months, including at AIDS 2022. It will soon be subtitled in French, Russian and Spanish, and we are also looking for partners to translate additional subtitles if they think the film can be useful in their own advocacy. If you’re interested you can get in touch with us at email@example.com. We will send you the English subtitle file for translation. After you return the file to us, we will upload it to YouTube.
Mwayi’s Story is part of our ongoing work to end the criminalisation of women living with HIV for breastfeeding and comfort nursing, including our Breastfeeding Defence Toolkit. It is our goal to collaborate with advocates, researchers, service providers, organisations and community members around the world to raise awareness and prevent further unjust prosecutions against women living with HIV who breastfeed or comfort nurse. We are grateful to both the Elizabeth Taylor AIDS Foundation and the Robert Carr Fund for their financial support for this work, and this film.
New Breastfeeding Defence Toolkit launched at Beyond Blame 2021
Criminal prosecutions related to presumed HIV exposure via breastfeeding are all-too-often driven by stigma, misinformation, and the desire to protect a child from exaggerated risk. People living with HIV require a vigorous defence based on principles of justice and human rights, good public policy, and accurate science.
The Breastfeeding Defence Toolkit provides materials to support lawyers and advocates supporting people living with HIV who face criminal charges or other punitive measures for breastfeeding, chestfeeding, or comfort nursing.
Although the Breastfeeding Defence Toolkit is currently only available in English, we are working on French, Russian and Spanish versions. In addition, new resources will be added to the Toolkit as they become available.
The Breastfeeding Defence Toolkit was launched at Beyond Blame: Challenging Criminalisation for HIV JUSTICE WORLDWIDE on Tuesday 30 November 2021. Watch the 10 minute segment below.
In 1986, it was discovered that HIV could be transmitted from a woman to a child through breastfeeding. Since this time, women living with HIV have borne the weight of the responsibility of preventing HIV transmission to their offspring. This responsibility has been used to justify surveillance, judgement, and limitations on autonomy and decision-making for women living with HIV.
Some women living with HIV have faced criminal prosecution for exposing fetuses and/or infants to a risk of HIV infection, especially through breastfeeding. These numbers may be small compared to the number who have faced criminal charges with respect to HIV non-disclosure, exposure and transmission in sexual contexts, but cases are increasing.
The HIV Justice Network is aware of at least 13 such cases in the past decade, with a growing number of criminal prosecutions taking place across the African continent as well as in Russia since 2018. We are also aware of several cases that took place in North America and Europe between 2005 – 2012.
These cases include charges laid against mothers, community members and domestic employees. Various criminal charges have been used in these cases, including failure to provide the necessaries of life, grievous bodily harm, unlawfully doing an act likely to spread a dangerous disease, and deliberately infecting another with HIV.
In addition to these criminal cases, many more women have experienced punitive responses from service providers, public health, and child welfare authorities.
Criminal prosecutions and other punitive responses to breastfeeding by women living with HIV pose significant harms to both the accused and the child. HIV criminalisation threatens the health and well-being of people living with HIV and jeopardises the goals of ending HIV discrimination and, ultimately, the epidemic. Not only do punitive laws targeting people living with HIV lack a scientific evidence base they also serve as barriers to HIV prevention, treatment, and care, and perpetuate stigma.
Infant feeding choices should not be a criminal issue. Parents should be provided with full information to make the best choices for their families and infant feeding should be managed through clinical support. Science supports that the best outcomes for a mother and a child result from proper medical care, access to treatment and openness. Criminalising maternal and child health issues generally risks worse outcomes for the infant.
[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.
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:
 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 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.
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.”
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 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.”
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.
Australia: New South Wales mandatory testing bill is unnecessary and could be counterproductive
Mandatory disease testing bill ‘could put officers at risk’
NSW Health says a proposed law enabling authorities to force people to undergo testing for bloodborne diseases could actually put frontline workers at greater risk.
The department’s evidence to a parliamentary committee came as a senior NSW police official said it’s “not unusual” for officers to get pelted with faeces mixed with blood.
Getting bitten, spat on, or splashed with blood are some of the unfortunate realities faced on the job by emergency and prison workers, and come with the additional fear of getting infected with bloodborne diseases.
But the risk of infection from such incidents is very low, and drawing blood samples from people against their will could make them less likely to trust health workers to perform voluntary tests, a top NSW Health official said.
Such an increase in mistrust could make it harder for health workers to combat the spread of the diseases, including among prisoners where the prevalence of hepatitis C is up to 20 per cent higher than in the general community, the committee heard.
“The importance of reducing any stigma and discrimination, and improving the quality and accuracy of information about bloodborne viruses is paramount to engaging people in treatment,” said Michelle Cretikos, executive director with NSW Health‘s population and public health division.
“If people are discouraged from accessing treatment, then in fact the risk may increase, both to the people in the community as well as the workers that are looking after them.
“It‘s likely to reduce people’s trust in the health services … and may reduce access to treatment and access to care.”
Since 1994, there have been zero cases of NSW healthcare workers getting infected with HIV after an exposure in the workplace, Dr Cretikos said, pointing to an NSW Health policy directive.
That same directive included a survey of international studies, including an Australian one, all of which failed to turn up a single case of HIV transmission to healthcare workers after exposure to the virus.
“There have been zero, zero, zero, zero, zero, zero cases in all of those studies … And that’s correct over many years, across many countries,” Dr Cretikos said.
Even when the exposure was in the form of a needle puncture, the transmission risk was calculated at 0.3 per cent.
One Brazilian study conducted between 1997 and 2009 that looked at 80 cases of healthcare workers getting exposed to HIV via needle prick injuries found that none of the workers were infected.
For hepatitis C exposure, the rate of transmission was slightly higher, with a range of nine international studies showing a rate between zero and 2.3 per cent.
That included an Australian study which showed no instances of transmission among 64 incidents of puncture injuries caused by large needles.
A top corrective services official said similar data was difficult to collect for prison staff, because workers were not mandated to let their employers know whether they had a disease or not.
But the fact that there is a risk means there is a need for greater protection, said Gayle Robson, chief of staff to the commissioner of Corrective Services NSW.
“It is (…) sufficient, there is simply a risk of our staff contracting bloodborne viruses,” Ms Robson said.
There was no risk of bloodborne virus infection from many other body fluids such as urine, spit or faeces, or when the skin wasn’t breached, the NSW Health document said.
NSW police deputy commissioner for corporate services Malcolm Lanyon told the committee that out of some 2,500 assaults on police last financial year, 490 involved exposure to bodily fluids, including 69 bites and 29 needlestick injuries.
He said being able to force people to undergo disease testing would significantly reduce the anxiety officers feel when they’ve been exposed to bodily fluids.
“Waiting periods associated with self-testing of the police officer can lead to months of uncertainty, which can be enormously stressful and have lasting psychological impacts on officers and their family,” Commissioner Lanyon said.
And while non-blood body fluids might not pose a disease risk on their own, officers were often exposed to a mix of substances that included blood, he said.
“There are a number of disgusting and degrading acts that happen often when someone is in custody in a cell … It’s not unusual for them to deliberately defecate in there, it’s not unusual for people to then self-harm in that cell, get blood mixed with faeces, and throw that at police officers. That’s not an unusual scenario in custody.”
Corrective Services director Craig Smith similarly said that corrective officers suffer a blow to their mental health when faced with uncertainty over whether they could have been infected.
“I’ve seen grown men cry,” Mr Smith said.
“I agree that the risks are low, (but) it‘s that ‘maybe’.”
UK: Police Federation working with the National AIDS Trust to tackle HIV stigma and misinformation
The Federation is working with the National AIDS Trust to tackle the stigma of HIV and provide reassurance for colleagues around its transmission.
Over the decades, many officers have been spat at or bitten by individuals who ‘weaponise’ the virus by claiming to be infected. But the chances of acquiring HIV through spit or a bite are close to zero, and no police officer has ever acquired it in this way.
There are only three ways a person can be infected – needle sharing, sexual intercourse and breastfeeding.
PFEW National Board member Simon Kempton, who has led on the issue of communicable diseases, said: “The act of spitting at a police officer is vile, is disgusting and particularly during a global pandemic carries risks of transmitting other diseases. But we know from decades of research that it’s impossible to transmit HIV by that method, and people who threaten us with that only increase that feeling of fear and stigma.
“The Federation is keen to help colleagues understand the true risks of transmission, to help them deal with the fear factor that’s been built in unnecessarily. Knowledge IS power and helping officers to understand how negligible the risks are is important to their mental health after being assaulted.”
HIV if left untreated, attacks the immune system. However, if caught early and treated, it will not lead to AIDS which is the advanced stage. AIDS is now very uncommon in the UK thanks to effective treatment and people living with HIV can live full and productive lives with normal life expectancy.
Since HIV is now classed as a disability and a protected characteristic, it is not appropriate to record HIV status as a warning marker on police databases, except in situations like Custody where treatments might need to be administered.
DC Tracy O’Hara QPM of Merseyside Police explained: “These markers should only be on a custody record health assessment and even then, only available to those who need to know this information. So, if someone says, ‘I live with this condition and I need my medicine’ that should be on the record, but HIV status is not something the police service should be disclosing nor holding as warning markers or flags.
“It is important to note that we have colleagues living with HIV. How must they feel when we add to stigma or we store this information in such a negative way? They are never going to feel comfortable sharing their status to ensure their health is looked after. So this is not simply about our communities it is about our colleagues as well.”
Look out for World AIDS Day on 1 December. This is an opportunity to show support for people living with HIV, and to remember those lost to the virus.
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