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.

Further resources

Mwayi’s Story is a short film about courage, and about women standing up for their rights. The film is based on a real case in Malawi and the subsequent successful advocacy to prevent an HIV criminalisation statute being passed. The full story of the woman who was prosecuted for briefly breastfeeding another woman’s baby is told in an HJN feature, It Takes More Than A Village to End HIV Criminalisation, by Sally Cameron, based on a report by Peter Gwazayani, Edna Tembo and Charity Mkona.

 

 

Why people living with HIV should not be criminalised for donating blood

Preventing the transmission of blood-borne infection by imposing limitations on the donation of blood is an important and legitimate public health objective.

Since the beginning of the HIV epidemic, certain groups – including, but not limited to, gay men and other men who have sex with men – have been subjected to restrictions on their ability to give blood.

Sustained advocacy by gay rights organisations in many high-income countries has focused on the discriminatory nature of these so-called ‘gay blood bans’, highlighting significant advances in blood screening capabilities. This has led to a general softening of restrictions on blood donations for gay men in many of these countries – allowing donations with ‘deferral periods’, or allowing donations based on individual risk assessments.

However, this advocacy has generally not translated into the removal of HIV-specific criminal laws for donating blood, nor has there been a call for a moratorium on singling out people living with HIV for donating blood using non-HIV-specific general criminal laws – even though many of the same public health and human rights arguments apply to both the so-called ‘gay blood bans’ and to HIV criminalisation more generally.

That is why today, the HIV Justice Network has published Bad Blood: Criminalisation of Blood Donations by People Living with HIV. The report was written by Elliot Hatt and edited by Edwin J Bernard, based on research undertaken by Sylvie Beaumont, with additional input provided by Sarai Chisala-Tempelhoff and Paul Kidd (HIV Justice Network’s Supervisory Board); Sean Strub (Sero Project) and Robert James (University of Sussex).

We found that 37 jurisdictions in 22 countries maintain laws that criminalise people with HIV for donating blood. Notably, 15 jurisdictions in the United States (US) have laws which specifically criminalise blood donations by people living with HIV, while four US states – California, Illinois, Iowa, and Virginia – have repealed laws which previously criminalised this conduct.

Although prosecutions are relatively rare, we are aware of at least 20 cases relating to blood donation since 1987. Half of these cases have been reported in Singapore, including two as recently as 2021.

We argue that the criminalisation of blood donations by people with HIV is a disproportionate measure – even if the aim of protecting public health through the prevention of transfusion-transmitted infection is legitimate – and is the result of both HIV-related stigma and homophobia. It is not supported by science.

There is no good reason for any country or jurisdiction to have HIV-specific criminal laws – whether they focus on blood donation or on sexual exposure or transmission. HIV-specific criminal laws are discriminatory and stigmatising, especially since people with other serious blood borne infections – including hepatitis B and C and syphilis – are not singled out with specific laws, nor for prosecution under general criminal laws.

Blood donation criminal laws focused on HIV should be repealed, prosecutions based on general laws should end, and instead science-informed measures – such as individual donor risk assessments and universal blood screening – should be relied on to protect the public against transfusion-transmitted infection.

Read the report at: https://www.hivjustice.net/publication/badblood

Advancing HIV Justice 4: new report highlights more successes, continued challenges

A new report published today (July 22nd 2022) by the HIV Justice Network (HJN) on behalf of HIV JUSTICE WORLDWIDE shows that the global movement to end HIV criminalisation continues to achieve remarkable successes, despite the many challenges that COVID-19 has brought.

Advancing HIV Justice 4: Understanding Commonalities, Seizing Opportunities provides a progress report of achievements and challenges in global advocacy against HIV criminalisation. The report generally covers a three year period ending 31 December 2021 where Advancing HIV Justice 3 ended. However, significant law reform developments that took place in the first quarter of 2022 are also included in report’s maps and analysis.

The successes

During the reporting period, four HIV criminalisation laws were repealed; another HIV criminalisation law was found to be unconstitutional; and six laws were ‘modernised’ (i.e. applied up-to-date science on HIV-related risk or harm and/or legal and human rights principles to limit the application of the law) five of which were in the United States.

In addition, we saw precedent-setting cases in four countries and policy recommendations or improvements in four further countries — all of which have the potential to limit the overly broad application of the law to people living with HIV based on HIV-positive status.

While legislative processes slowed down or stalled in some places due to COVID-19 diminishing capacity for advocacy, more HIV criminalisation laws were modernised or repealed in the United States than during any other time period, the realisation of a maturing PLHIV-led HIV decriminalisation movement that began a decade or more ago.

These outcomes were primarily due to sustained advocacy – most of it led by PLHIV networks working with allies – using a wide range of strategies. These are analysed in the report by HJN’s senior policy analyst, Alison Symington.

The challenges

However, too many HIV criminalisation cases and continued high numbers of HIV-related criminal laws continue to be of great concern, requiring more attention, co-ordinated advocacy, and funding.

Our global audit of HIV-related laws found that a total of 82 countries (111 jurisdictions) have criminal laws that are HIV-specific. Of those, we are aware of 52 jurisdictions in 35 countries that have applied their HIV-specific criminal laws.

Another 89 jurisdictions in 48 countries have applied non-HIV-specific, general criminal laws in an overly broad manner since the first prosecution in 1986.

Our case analysis shows that HIV criminalisation continues to disproportionately impact women, racial and ethnic minorities, migrants, gay men and other men who have sex with men, transgender people, and sex workers.

Although the total number of cases has diminished in some US states as well as in countries that were previously HIV criminalisation hotspots – Canada, Czech Republic, Norway, Sweden, and Zimbabwe – too many unjust prosecutions and convictions continue to be reported.

During the reporting period, we recorded 275 cases in HJN’s Global HIV Criminalisation Database. However, when we include case numbers from several Eastern European and Central Asian countries that provide official data, we estimate almost 700 criminal cases over the reporting period.

Notwithstanding the limitations of tabulating cases globally, the highest number of reported cases during the period covered by this report were in:

The report is available to download in English, French, Russian and Spanish. 

Acknowlegements

Advancing HIV Justice 4 was conceived and edited by HJN’s executive director, Edwin J Bernard, and HJN’s senior policy analyst, Alison Symington. Alison Symington researched and wrote all chapters except for ‘Global Overview’, which was researched and written by Edwin J Bernard, using data collected by Sylvie Beaumont and analysed by Tenesha Myrie.

Additional input was provided by: Gonzalo Aburto (The Sero Project), India Annamanthadoo (HIV Legal Network), Stephen Barris (Ex Aequo), Sophie Brion (International Community of Women Living with HIV), Janet Butler-McPhee (HIV Legal Network), Nyasha Chingore-Munazvo (AIDS and Rights Alliance for Southern Africa), Kenechukwu Esom (United Nations Development Programme), Elie Georges Ballan (The Joint United Nations Programme on HIV/AIDS – UNAIDS), Alfredo González (Hondureños Contra el SIDA), Julian Hows (HIV Justice Network), Deidre Johnson (Ending Criminalization of HIV and Overincarceration in Virginia Coalition), Cécile Kazatchkine (HIV Legal Network), Svitlana Moroz (Eurasian Women’s Network on AIDS), Immaculate Owomugisha Bazare (Uganda Network on Law Ethics and HIV/AIDS), Stephen Page (Nevada HIV Modernization Coalition), Cedric Pulliam (Ending Criminalization of HIV and Overincarceration in Virginia Coalition), Florence Riako Anam (Global Network of People Living with HIV), Mianko Ramaroson (The Joint United Nations Programme on HIV/AIDS – UNAIDS), Demario Richardson (Missouri HIV Justice Coalition), Sean Strub (The Sero Project), and Alexandra Volgina (Global Network of People Living with HIV).

We would especially like to acknowledge the courage and commitment of the growing number of people living with HIV and allies around the world who are challenging laws, policies and practices that inappropriately regulate and punish people living with HIV. Without them, this report — and the victories reported herein — would not have been possible.

We gratefully acknowledge the financial contribution of the Robert Carr Fund to this report.

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

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

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

Ultimately, Mwayi’s Story is about HIV justice!

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

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

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

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

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

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

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

New 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.

Which is why this week we have launched the Breastfeeding Defence Toolkit as a new section of our HIV Justice Tookit.

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.

Background

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.

UPDATE: Speakers now confirmed for #BeyondBlame2021!

REGISTER HERE

Beyond Blame, our flagship meeting for activists, human rights defenders, criminal legal system and public health system actors, healthcare professionals, researchers, and anyone else working to end HIV criminalisation, is returning for a special eve-of-World AIDS Day edition.

Following the success of last year’s Beyond Blame @ HIV2020, which was reimagined as a two-hour web show, the HIV JUSTICE WORLDWIDE coalition is delighted to announce that Beyond Blame: Challenging Criminalisation for HIV JUSTICE WORLDWIDE will take place on Tuesday, November 30, 2021, from 6-8 PM Central European Time. Check this link to find the event in your local time.

REGISTER HERE

Beyond Blame is a unique opportunity to learn why HIV criminalisation matters, as well as hear about the wide range of initiatives and strategies that have been used by activists, lawyers, networks, and organisations around the world to work towards ending the inappropriate use of criminal law to regulate and punish people living with HIV.

We will be highlighting some of the successes and challenges of the global movement to end HIV criminalisation over the past year, including work on ending the criminalisation of women living with HIV for breastfeeding, exploring whether scientific advances, such as the prevention benefit of treatment (U=U) and Molecular HIV Surveillance, help or hinder our movement and much, much more.

Beyond Blame will take place in English, with interpretation available in French, Russian and Spanish.

Follow the conversation on Twitter via #BeyondBlame2021 #HIVJustice

REGISTER HERE

Molecular HIV Surveillance “a perfect storm” in the context of HIV-related criminalisation

A new briefing paper published today by Positive Women’s Network-USA on behalf of the HIV JUSTICE WORLDWIDE coalition aims to support people living with HIV, activists, legal experts, and human rights campaigners in understanding the complexities and consequences of molecular HIV surveillance (MHS). 

Molecular HIV Surveillance: A global review of human rights implicationsprovides a detailed explanation of what MHS is and how it is used across the globe, including how the technology works, where it is being conducted, and by whom. The paper describes growing human rights concerns relating to the use of this technology and goes on to list a number of recommendations for the use of MHS which were gathered from an international literature review and from members of the Expert Advisory Group.*

Molecular HIV surveillance (MHS) is an umbrella term that describes a wide range of practices focused on the monitoring of HIV variants and the differences and similarities between them for scientific research, public health surveillance, and intervention.

To conduct MHS, scientists rely on the results of HIV genetic sequencing tests taken from people living with HIV – these tests are often done before prescribing HIV medication to determine if the individual has a strain of HIV that is resistant to certain treatments. Interest in, and use of, MHS for reasons other than tailoring treatment regimens is increasing globally, however. Of particular concern, in some regions, MHS is being conducted and HIV data is being shared in ways that put the rights and safety of people living with HIV in jeopardy. 

“HIV is highly stigmatised and communities that are most vulnerable to acquiring HIV are already highly policed and at risk for violence” said Naina Khanna, co-executive director of Positive Women’s Network-USA, a US-based membership organisation led by women and people of transgender experience living with HIV. “In more than 30 states in the US alone, and over 100 countries around the world, people with HIV can be criminalised on the basis of their health condition. Taking this kind of data from people without their consent or knowledge and storing or sharing it without adequate protections is extremely risky and could come at the cost of someone’s personal safety, their livelihood, and in the case of HIV criminalisation, their freedom.”

The paper highlights how HIV experts and advocates have raised a range of human rights concerns about this technology. These include: 

  • Consent and autonomy; 
  • Lack of community consultation; 
  • Increased stigma on targeted communities; 
  • Privacy and data protections; 
  • Whether or not the technology can be used to “prove” direct transmission; and,
  •  How MHS may intensify HIV criminalisation within communities who are already marginalised and oppressed.

Edwin J Bernard, Executive Director of the HIV Justice Network and global co-ordinator of the HIV JUSTICE WORLDWIDE coalition added: “MHS treats people living with HIV as ‘clusters’ and targets of public health interventions, rather than the beneficiaries of public health. When you combine MHS with HIV criminalisation it’s a perfect storm. That’s why I commissioned PWN-USA to produce this briefing paper as a first step to understand the problems and to suggest a range of possible solutions. With increased knowledge on the practices of MHS, individuals and organisations can be better equipped to advocate for ending research and surveillance practices that have the potential to harm the rights, autonomy, and well-being of people living with HIV.”

The paper provides wide-ranging recommendations for change aimed at various stakeholders, highlighting five key areas of action:

  1.   Take seriously and act upon community concerns about MHS.
  2.   Respect the bodily autonomy and integrity of people living with HIV in all our diversity.
  3.   MHS implementers must demonstrate a clear public health benefit that outweighs the potential harms of MHS, including by ensuring protections (i.e., data privacy, legal protections, social harms prevention, etc). These demonstrated benefits of MHS must measurably include people living with HIV.
  4.   Providers ordering HIV sequencing must inform people living with HIV about how their blood and data are being used for MHS purposes and be allowed to withdraw the consent if they so wish, without fear of negative consequences to their HIV treatment and care.
  5.   Implementers of MHS should publicly advocate against punitive or coercive laws and policies aimed at people living with HIV and ensure that MHS is never used in criminal, civil, or immigration investigations or prosecutions.

The paper is now available in four languages:

Watch the launch video below:

Follow the online conversation on Twitter by using the hashtags #EndMHS #DataPrivacy #DataProtection #HIVJustice and by following @HIVJusticeNet @uspwn

We gratefully acknowledge the financial contribution of the Robert Carr Fund to this report.

*MHS Expert Advisory Group

  • Naina Khanna & Breanna Diaz, Positive Women’s Network-USA
  • Edwin J. Bernard, HIV Justice Network
  • Marco Castro-Bojorquez, HIV Racial Justice Now (in memoriam)
  • Brian Minalga, Legacy Project
  • Andrew Spieldenner, US People Living with HIV Caucus
  • Sean Strub, Sero Project

[Feature] It Takes More Than A Village to End HIV Criminalisation

The proverb says, “It takes a village to raise a child”. But what if a mother in the village is living with HIV, and some of the villagers stigmatise her? What if that stigma creates a situation where the mother living with HIV is unjustly criminalised because of her HIV status? Then it takes more than a village to get justice for that woman. It takes a global movement to end HIV criminalisation to sensitise and train lawyers and expert witnesses.  It takes national communities of women living with HIV to support that woman following her release, and to educate the community in which she lives about HIV.

Introduction

In 2016, a Malawi court convicted a woman living with HIV of “negligently and recklessly doing an act likely to spread the infection of any disease which is dangerous to life” under section 192 of the Malawi Penal Code. She had attended a village meeting with her baby which she breastfed as usual before passing the child to her grandmother. Another woman then asked her to hold her baby. It was alleged that this child began breastfeeding briefly before the woman realised what was happening. The child’s mother then reported the incident to the police. The woman was arrested and without legal advice or representation, pleaded guilty, was convicted, and sentenced to nine months’ imprisonment with hard labour.

The circumstances of the case are all the more shocking because women living with HIV are encouraged to breastfeed in Malawi (and in other countries with high HIV prevalence and settings in which diarrhoea, pneumonia and undernutrition are common causes of infant and child deaths) and because HIV-related prosecutions involving breastfeeding are exceedingly rare. Unfortunately, we have seen an increase in the number of such cases since 2016. HJN is working to address this in a number of ways because we believe there should never be prosecutions of women living with HIV for breastfeeding.

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.

Wesley Mwafulirwa Photo: Amos Gumulira/UNDP Malawi

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.     

“We want a people’s vaccine, not a profit vaccine”

Yesterday was the Global Day of Action for a #PeoplesVaccine.

On 11 March, one year since the World Health Organisation declared a COVID-19 pandemic, influential leaders including Winnie Byanyima from UNAIDS and social justice organisations like Human Rights Watch, joined tens of thousands of individuals and organisations all over the world demanding a People’s Vaccine – a vaccine that is made freely available to everyone, everywhere.

Countries in the global South are currently unlikely to receive a COVID-19 vaccine until 2023. This is a scandal and threatens everyone.

In a feature story published yesterday, UNAIDS highlighted that as developing countries are facing critical shortages of oxygen and medical supplies to cope with COVID-19,  few have been able to administer a single dose of a COVID-19 vaccine. In contrast, rich nations have vaccinated their citizens at a rate of one person per second over the last month.

We wholeheartedly support this campaign to pressure pharmaceutical companies and governments to end vaccine monopolies.  Following yesterday’s WTO vote by rich countries  against waiving patent rules, we stand in solidarity with its demands that:

  • Pharmaceutical companies openly share vaccine know-how. They can do this by joining the World Health Organisation COVID-19 Technology and Access Pool (C-TAP).
  • Governments suspend patent rules at the World Trade Organisation on COVID-19 vaccines, treatments, and testing during the pandemic. This will help break Big Pharma monopolies and increase supplies so there are enough doses for everyone, everywhere.

Click the link below to learn more about how you can support the People’s Vaccine campaign.

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