Austria: Care organisations refuse to provide home care for 81-year-old man living with HIV

Just like in the 80s: No 24-hour care for HIV-positive people.

Translated via Deepl.com. For original article in German, please scroll down.

A large care organisation terminated without notice a contract concluded shortly before, because of HIV infection. All others also refused because of HIV.

In this guest blog, lawyer Helmut Graupner describes how an HIV infection can still lead to discrimination in Austria, despite the fact that educational work has been going on for decades and effective HIV therapy is available that prevents the disease, leads to a normal life expectancy and even means that HIV-infected people cannot infect anyone.

In the spring of 2023, an 81-year-old gentleman, let’s call him RS, found that outpatient home care was no longer sufficient and 24-hour nursing care was becoming necessary. RS has been HIV positive for many years. Due to successful treatment, the infection has never caused him to become ill. The Red Cross had provided the previous outpatient home care in an exemplary manner, with commitment and without any reservations regarding the HIV infection.

In mid-April, a contract was concluded with one of the large Austrian nursing organisations for the placement of nursing staff. For this purpose, the regional manager of this organisation was on site at the flat. He had an insight into the care book and the care records that had previously been kept by the Red Cross. In the documentation folder of the Red Cross, the HIV infection was noted on the very first page. The regional officer also spoke for a long time on the phone with the head of the previous care provided by the Red Cross and discussed how to proceed. The HIV infection could also be seen in the findings and diagnoses that were consulted.

The nursing organisation found a nurse who immediately started her first rotation. A week later, the area manager visited the home. One of the things discussed was that RS has to be taken to hospital every three months for HIV status check. This lady also did not express any concerns about HIV infection.

Carers not asked at all

The surprise was all the greater when, four days after this meeting, a (different) representative of the care organisation called to say that the written termination of the contract was already in the mail. She explicitly mentioned the HIV infection as the reason. Pointing out that his status was below the detection limit, i.e. RS was not contagious at all, was of no use. This did not change the fact that no nursing staff would be willing to take over the care. The matter had been discussed internally and the nursing staff could not be told. They would not understand because they all came from Romania and Slovakia and all had this negative attitude. There was no mention of caregivers themselves refusing care.

So the care organisation did not even try to discuss the matter with a single one of the caregivers (who were allegedly so prejudiced) and win them over to care for RS. Even the nurse who was already placed and working at the time only knew that she would not be replaced by the originally intended colleague. She did not know any reason and assumed that she would return in four weeks. In any case, she (coming from Romania) had no problem with the HIV status.

One day after the phone call, the letter from the care organisation arrived. The placement contract was terminated without notice (without observing the period of notice!) at the end of the current caregiver’s rotation. The reason given was succinct: “The care cannot be transferred to the care workers for professional reasons. It is not possible to find new caregivers.

Austrian organisations all refused

Upon lawyer intervention, the care organisation insisted in a written statement on the termination without notice. Even the fact that the Romanian carer who had already been placed was willing to continue the care did not change anything. The care organisation could only guarantee quality assurance if it could cover each rotation with a carer who had a contractual relationship with it. If the Romanian carer who had already been placed wanted to stay and continue caring for RS, the organisation could “gladly accept that”. However, she would then have to leave the contractual relationship with the care organisation (“We do not keep the carer”).

Although the Aidshilfe Wien and the legal committee Lambda stood up for RS, the care organisation remained firm. That was not enough. RS and his relatives then tried to get 24-hour care from the other Austrian care organisations available in the region. All of them explained that this was not possible because the care workers came from countries where people had just such attitudes.

Slovakian agency had no problem

RS considered a complaint of discrimination, but died a few weeks later, now 82 years old. He died knowing that he was discriminated against because of his HIV infection and that nobody could do anything about it. And the discriminators got away with it just fine.

At least he was cared for at home in his last weeks, despite the closed refusal in Austria. An agency from Slovakia had no problem with the HIV status, just like the caregivers they placed. A disgrace for Austria in 2023


Wie in den 80ern: Keine 24-Stunden-Pflege für HIV-Positive

Eine große Pflegeorganisation kündigt den kurz zuvor geschlossenen Vertrag fristlos wegen einer HIV-Infektion. Auch alle anderen lehnen wegen HIV ab

Im Gastblog schildert Rechtsanwalt Helmut Graupner, wie eine HIV-Infektion in Österreich noch immer zu Diskriminierung führen kann, obwohl seit Jahrzehnten Aufklärungsarbeit betrieben wird und eine wirksame HIV-Therapie vorhanden ist, die die Erkrankung verhindert, zu einer üblichen Lebenserwartung führt und sogar bewirkt, dass HIV-Infizierte niemanden anstecken können.

Im Frühjahr 2023 ergibt sich bei einem 81-jährigen Herrn, nennen wir ihn RS, dass die ambulante Hauskrankenpflege nicht mehr ausreicht und eine 24-Stunden-Pflege notwendig wird. RS ist seit vielen Jahren HIV-positiv. Durch die erfolgreiche Behandlung hat die Infektion bei ihm nie eine Erkrankung hervorgerufen. Das Rote Kreuz hatte die bisherige ambulante Hauskrankenpflege vorbildlich, engagiert und ohne jegliche Vorbehalte hinsichtlich der HIV-Infektion erbracht.

Mitte April wurde mit einer der großen österreichischen Pflegeorganisationen ein Vertrag über die Vermittlung von Pflegekräften abgeschlossen. Dazu war der Regionsverantwortliche dieser Organisation vor Ort in der Wohnung. Er hatte Einblick in das Betreuungsbuch und in die Pflegeunterlagen, die bisher vom Roten Kreuz geführt wurden. In der Dokumentationsmappe des Roten Kreuzes war gleich auf der ersten Seite die HIV-Infektion vermerkt. Der Regionsverantwortliche hat überdies lange Zeit mit der Einsatzleiterin der bisherigen Pflege durch das Rote Kreuz telefoniert und dabei die weitere Vorgangsweise abgesprochen. Auch den eingesehenen Befunden und Diagnosen war die HIV-Infektion zu entnehmen.

Die Pflegeorganisation vermittelte eine Pflegerin, die ihren ersten Turnus sogleich angetreten hat. Eine Woche später suchte die Bereichsleiterin die Wohnung auf. Dabei wurde unter anderem besprochen, dass RS alle drei Monate zur Überprüfung des HIV-Status in ein Krankenhaus gebracht werden muss. Auch diese Dame äußerte keine Bedenken bezüglich der HIV-Infektion.

Pflegepersonen gar nicht gefragt

Umso größer war die Verwunderung als vier Tage nach dieser Besprechung eine (andere) Vertreterin der Pflegeorganisation anrief und mitteilte, dass die schriftliche Auflösung des Vertrages bereits mit der Post unterwegs sei. Als Begründung hat sie ausdrücklich die HIV-Infektion genannt. Der Hinweis darauf, dass sein Status unter der Nachweisgrenze liegt, RS also gar nicht ansteckend ist, nutzte nichts. Das ändere nichts daran, dass kein Pflegepersonal bereit wäre, die Pflege zu übernehmen. Die Sache sei intern beraten worden, und man könne das den Pflegekräften gar nicht sagen. Diese würden das nicht verstehen, denn sie kämen alle aus Rumänien und der Slowakei und hätten halt alle diese negative Einstellung. Es war nicht die Rede davon, dass Betreuerinnen oder Betreuer selbst die Pflege abgelehnt hätten.

Die Pflegeorganisation hat also mit keiner einzigen der (angeblich derart vorurteilsbehafteten) Pflegepersonen auch nur versucht, die Sache zu besprechen und sie für eine Pflege von RS zu gewinnen. Auch die damals bereits vermittelte und tätige Pflegerin wusste nur, dass sie nicht von der ursprünglich vorgesehenen Kollegin abgelöst wird. Grund wusste sie keinen und ging davon aus, dass sie in vier Wochen wiederkommt. Sie (aus Rumänien kommend) hatte jedenfalls kein Problem mit dem HIV-Status.

Einen Tag nach dem Telefonat langte das Schreiben der Pflegeorganisation ein. Der Vermittlungsvertrag wurde mit Ende des laufenden Turnus der aktuellen Pflegerin fristlos (ohne Einhaltung der Kündigungsfrist!) aufgelöst. Zur Begründung hieß es lapidar: “Die Betreuung kann aus fachlichen Gründen den Betreuungskräften nicht übertragen werden. Eine Vermittlung von neuen Personenbetreuer*innen ist nicht möglich.”

Österreichische Organisationen lehnten alle ab

Auf anwaltliche Intervention beharrte die Pflegeorganisation in einer schriftlichen Stellungnahme auf der fristlosen Auflösung. Auch der Umstand, dass die bereits vermittelte rumänische Pflegerin zur Fortführung der Pflege bereit war, änderte daran nichts. Die Pflegeorganisation könne die Qualitätssicherung nur gewährleisten, wenn sie jeden Turnus mit einer Pflegekraft abdecken könne, die mit ihr in einem Vertragsverhältnis steht. Wenn die bereits vermittelte rumänische Pflegerin bleiben und die Pflege von RS fortsetzen wolle, könne die Organisation “das gerne akzeptieren”. Sie müsse dann aber aus dem Vertragsverhältnis mit der Pflegeorganisation ausscheiden (“Wir halten die Betreuerin nicht fest”).

Obwohl sich die Aidshilfe Wien und das Rechtskomitee Lambda für RS einsetzten, blieb die Pflegeorganisation hart. Damit nicht genug. RS und seine Angehörigen versuchten dann bei den anderen in der Region verfügbaren österreichischen Pflegeorganisationen eine 24-Stunden-Pflege zu erhalten. Alle erklärten, dass dies nicht möglich sei, weil die Pflegekräfte aus Ländern kämen, in denen die Menschen eben solche Einstellungen hätten.

Slowakische Agentur hatte kein Problem

RS überlegte eine Klage wegen Diskriminierung, ist aber einige Wochen danach, mit mittlerweile 82 Jahren, verstorben. Er starb im Wissen, dass er wegen seiner HIV-Infektion diskriminiert wurde und niemand etwas dagegen tun konnte. Und die Diskriminierenden damit gut durchgekommen sind.

Zumindest wurde er in seinen letzten Wochen dann, trotz der geschlossenen Weigerung in Österreich, doch noch zu Hause gepflegt. Eine Agentur aus der Slowakei hatte, ebenso wie die von ihr vermittelten Pflegekräfte, kein Problem mit dem HIV-Status. Eine Schande für Österreich im Jahr 2023.

IAS 2023: Five-year impact of Expert Consensus Statement – poster published today

Today, 24th July, at the 12th IAS Conference on HIV Science on Brisbane, we presented our research findings on the five-year impact of the ‘Expert Consensus Statement on the Science of HIV in the Context of Criminal Law’.

Click on the image above to download the pdf of the poster

Tomorrow, 25th July, we will publish the full research report and discuss the findings on 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 where she is serving as a rapporteur, to discuss the Statement’s relevance today.

HIV Justice Live! Episode 5: Bringing Science to Justice will be live on Facebook and YouTube on Tuesday 25th July at 3pm CEST (click here for your local time).

Transgender Day of Visibility 2023

Honouring the courage of transgender people globally, especially transgender people living with HIV

Today is International Transgender Day of Visibility, held annually on 31st March to celebrate transgender people globally and honour their courage and visibility to live openly and authentically.

This year’s 14th annual celebration is a day to also raise awareness around the stigma, discrimination and criminalisation that transgender people face.

According to the Human Dignity Trust, 14 countries currently criminalise the gender identity and/or expression of transgender people, using so-called ‘cross-dressing’, ‘impersonation’ and ‘disguise’ laws. In many more countries transgender people are targeted by a range of laws that criminalise same-sex activity and vagrancy, hooliganism and public order offences.

Transgender people living with HIV can be further criminalised based on their HIV-positive status, although we know that there are still too many invisibilities around the impact of HIV criminalisation on transgender people.

Cecilia Chung, Senior Director of Strategic Initiatives and Evaluation of the Transgender Law Center, who is also a member of our Global Advisory Panel told our 2020 Beyond Blame webinar that there are not enough data on the impact of HIV criminalisation laws on transgender people. She said such data are not “uniformly collected across the world… The numbers still remain invisible even though we know for sure there are [HIV criminalisation] cases.”

HJN honours the courage of transgender people – especially transgender people living with HIV – to live openly and authentically. We also call for more visibility for transgender people in data collection, as well as reforms of all criminal laws and their enforcement that disproportionately target transgender people.

USA: New report from Williams Institute shows HIV-related arrests in Louisiana are disproportionately based on race

Black men account for 91% of HIV-related arrests in Louisiana

A new data interactive looks at the impact of HIV criminal laws on people living with HIV in nine states, including Louisiana

Since 2011, as many as 176 people have had contact with Louisiana’s criminal legal system because of allegations of HIV crimes, according to a new report by the Williams Institute at UCLA School of Law. HIV-related crimes are disproportionately enforced based on race and sex. In Louisiana, Black men represent 15% of the state population and 44% of people living with HIV, but 91% of those arrested for an HIV crime.

Using data obtained from the Louisiana Incident-Based Reporting System and from the state’s most populous parishes, researchers found that enforcement of HIV crimes is concentrated in East Baton Rouge Parish, Orleans Parish, and Calcasieu Parish. Furthermore, the number of HIV incidents—or interactions with law enforcement involving allegations of HIV crimes—is not declining over time.

HIV criminalization is a term used to describe laws that either criminalize otherwise legal conduct or increase the penalties for illegal conduct based upon a person’s HIV-positive status. Nearly two-thirds of U.S. states and territories currently have laws that criminalize people living with HIV.

A new data interactive looks at the impact of HIV criminal laws on people living with HIV in nine states, including Louisiana.

Louisiana has one criminal law related to HIV, which makes it a felony for a person who knows of their HIV-positive status to intentionally expose another person to HIV through sexual contact or other means without consent. The maximum sentence for an intentional exposure conviction is 10 years, and people convicted of an HIV crime are required to register on the state’s sex offender registry for at least 15 years.

Louisiana’s HIV criminal law does not require actual transmission, intent to transmit, or even the possibility of transmission to sustain a conviction. Between 2011 and 2022, incarceration for HIV crimes cost Louisiana at least $6.5 million.

“The cost of Louisiana’s HIV criminal law is likely much higher. Even with only partial access to the state’s criminal enforcement data, the trends were dramatic,” said lead author Nathan Cisneros, HIV Criminalization Analyst at the Williams Institute. “Louisiana’s HIV criminal law may undermine the state’s public health efforts by deterring the communities most impacted by HIV, including people of color and sex workers, from seeking testing and treatment.”

KEY FINDINGS

  • Most HIV criminal incidents (80%) in Louisiana involved only allegations of an HIV-related crime; no other crimes were alleged in the incidents.
  • Black people—and especially Black men—were the majority of people identified as suspects and arrested for HIV-related crimes in Louisiana.
    • Across the state, 63% of suspects were Black and 45% were Black men. For incidents that resulted in arrest, all of those arrested were Black and 91% were Black men.
    • In New Orleans, close to 80% of all suspects were identified as Black and 58% were Black men.
  • Black people and women were overrepresented among victims of HIV-related incidents.
    • Across the state, Black women and white women each represented 28% of all victims.
    • In New Orleans, Black men were 58% of all victims.
  • Since 1998, there have been at least 47 separate HIV-related convictions resulting in sex offender registration, involving 43 people.
  • Most people (63%) on the sex offender registry because of an HIV-related conviction are on the registry only because of the HIV-related conviction.
  • Three-quarters of people on the sex offender registry for an HIV-related conviction were Black.
  • Guilty outcomes resulted in an average sentence of 4.3 years.
  • Incarcerating people for HIV-related charges has cost Louisiana at least $6.5 million.

This report is part of a series of reports examining the ongoing impact of state HIV criminalization laws on people living with HIV. Take a look at our new data interactive summarizing the findings of our research.

Read the report

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

US: Enforcement of HIV crimes in Tennessee disproportionately affects women and Black people

150 people on Tennessee’s sex offender registry for HIV-related conviction

Nearly one-half of HIV registrants on the SOR were women and over three-quarters of HIV registrants were Black.

LOS ANGELES – At least 154 people have been placed on Tennessee’s sex offender registry (SOR) for an HIV-related conviction since 1993, according to a new report by the Williams Institute at UCLA School of Law.

Enforcement of HIV crimes in Tennessee disproportionately affects women and Black people. Nearly one-half of HIV registrants on the SOR were women and over three-quarters of HIV registrants were Black.

Tennessee’s two primary HIV criminalization laws—aggravated prostitution and criminal exposure—make it a felony for people living with HIV to engage in sex work or other activities, such as intimate contact, blood donation, or needle exchange, without disclosing their status. Both are considered a “violent sexual offense” and require a person convicted to register as a sex offender for life.

Examining Tennessee’s sex offender registry, researchers found that Shelby County, home to Memphis, accounts for most of the state’s HIV convictions. Shelby County makes up only 13% of Tennessee’s population and 37% of the population of people living with HIV in the state, but 64% of HIV registrants on the SOR. Moreover, while Black Tennesseans were only 17% of the state’s population and 56% of people living with HIV in the state, 75% of all HIV registrants were Black.

In Shelby County, 91% of aggravated prostitution convictions resulted from police sting operations in which no physical contact ever occurred. In addition, the case files showed that 75% of those convicted were Black women. When it came to criminal exposure case files, all of those convicted except one person were Black men.

“Tennessee’s HIV criminal laws were enacted at a time when little was known about HIV and before modern medical advances were available to treat and prevent HIV,” said lead author Nathan Cisneros, HIV Criminalization Analyst at the Williams Institute. “Tennessee’s outdated laws do not require actual transmission or the intent to transmit HIV. Moreover, the laws ignore whether the person living with HIV is in treatment and virally suppressed and therefore cannot transmit HIV.”

KEY FINDINGS

  • Incarcerating people for HIV-related offenses has cost Tennessee at least $3.8 million.
  • Of the 154 people who have been placed on Tennessee’s SOR for an HIV-related conviction, 51% were convicted of aggravated prostitution, 46% were convicted of criminal exposure, and 3% were convicted of both.
  • Women account for 26% of people living with HIV in Tennessee and 4% of people on the SOR, but 46% of the SOR’s HIV registrants.
  • Black people account for 17% of people living in Tennessee, 56% of those living with HIV, 27% of people on the SOR, but 75% of the SOR’s HIV registrants.
  • Black women were the majority of aggravated prostitution registrants (57%), while Black men were the majority of criminal exposure registrants (64%).
  • People with an HIV-related offense are more economically vulnerable when compared to others on the state’s SOR.
    • One in five (19%) HIV registrants were homeless compared to 9% of all SOR registrants.
    • 28% of HIV registrants reported an employer address compared to about half (49%) of all SOR registrants.
  • Shelby County has one aggravated prostitution conviction for every 115 people living with HIV in the county, and Black people were 90% of all people convicted for aggravated prostitution.
    • Over 90% of aggravated prostitution convictions in Shelby County were the result of police sting operations.
    • Only 3% of aggravated prostitution convictions in Shelby County alleged any intimate contact.
    • Nearly all (95%) people arrested in Shelby County for criminal exposure were Black men, compared to 64% of people statewide.

The Williams Institute has conducted research on HIV criminalization in numerous U.S. states.

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.