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.

Belarus: Eurasian Women’s AIDS Network submits list of issues on the implementation of CEDAW as it relates to women living with HIV

List of Issues on the implementation of the CEDAW by the Republic of Belarus as it relates to women living with HIV submitted for the consideration at the 83^rd Pre-Sessional Working Group of the UN Committee on the Elimination of Discrimination against Women – Geneva, Switzerland, 28 February – 4 March 2022

Prepared by the Eurasian Women’s Network on AIDS

The Eurasian Women’s Network on AIDS brings together activists and women-led organizations from 12 countries of Eastern Europe and Central Asia to improve access to healthcare services for women living with HIV and vulnerable to HIV, to protect them from violence, and provide inclusive involvement of them in public debate, on which their lives and health depend.
This submission focuses on the following issues – harmful effects of the legally enshrined criminal prosecution of women living with HIV (criminalization of HIV exposure, non-disclosure and transmission), ministerial and inter-agency practices that exacerbate the situation of women living with HIV, women who use drugs, diagnosis disclosure, violence against women.

The full submission is available for download in English and in Russian from the UN Treaty Body Database.

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.

El Salvador: Stigma Index reports that 23 women were sterilised without their knowledge or consent in the past year

El Salvador forced sterilisation of HIV-positive women

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

Written by Fátima Escobar

When Lizz found out she was pregnant, she was also told she had HIV. When she gave birth to her only daughter, at the age of 17, she was forcibly sterilised by medical staff at one of El Salvador’s main public hospitals. The Constitutional Chamber of the Supreme Court of the Central American country only recognised that her right to reproductive health was violated. Eleven years later, she still wants to become a mother again. This text is part of the collaborative journalism project #ChangeTheStory, supported by the Deutsche Welle Akademie.

Months earlier, Lizz had received the news of her pregnancy and the positive test result for human immunodeficiency virus (HIV) at the same time. She says she was more concerned about the news of her pregnancy than the HIV diagnosis.

One morning in December 2010, Lizz* felt her baby kicking loudly in her belly and demanding to come into the world. Her pregnancy, marked by the despair of an unforeseen diagnosis, was nearing full term.

Upon her arrival at the National Women’s Hospital “Dr. María Isabel Rodríguez”, the most important women’s hospital in El Salvador, medical staff asked her if she wanted to be sterilised, but Lizz said no. Because of her HIV status, she had to be sterilised. Because of her HIV status, she had to have a caesarean section and was taken to the operating room that night.

Minutes before she was to be anaesthetised for the caesarean section, a nurse asked her again if she was going to be sterilised and handed her a form to authorise the procedure. Lizz signed without being fully informed of the consequences.

Eleven years later, she talks about that day via video call. She pauses, takes her eyes off the screen and says: “They were practically going to let me die, they told me that if I didn’t sign they wouldn’t treat me. I signed because I couldn’t stand the pain.

After giving birth to her only daughter, Lizz had part of her reproductive organ mutilated in surgery to prevent her from having children again when she was only 17.

Four years later, Lizz’s case was taken to the Constitutional Chamber of the Supreme Court of El Salvador, where it was found that she did not have full capacity to give informed consent to be sterilised because she was a minor.

I A pillar of support
When Lizz was just 16, she had a relationship with a man eight years her senior. A few months later, she began to feel sick and had severe headaches. She went to the doctor in the community of Cojutepeque, less than an hour from the capital, and after tests she was told that she was pregnant and that she was also HIV-positive.

“At that moment, what worried me most was that I was pregnant. I didn’t think about the HIV diagnosis,” she says.

When she told her partner the news, he was not surprised. He already knew he was HIV-positive and offered to live with her as a couple. Lizz moved out of her parents’ house and stopped her studies. Today she believes that she became pregnant as a result of rape because she was still a minor.

For the next few months, she had to go to the Women’s Hospital, the only one in the country for maternal care, where she received a course of retrovirals. At birth, her baby was born with a negative diagnosis. She was free of the virus.

The human immunodeficiency virus attacks the immune system and weakens defence systems against infections and certain cancers. It is transmitted through the exchange of body fluids from an infected person, such as blood, breast milk, semen or vaginal secretions.

State data show that the chances of a child being infected with HIV at birth are very low. According to the Ministry of Health of El Salvador (MINSAL), one in every 100 babies born to mothers with HIV are diagnosed with the virus. These figures are consistent with those reported by the Joint United Nations Programme on HIV/AIDS (UNAIDS), which states that the risk of a woman with HIV transmitting the virus to her child is reduced to 5% or less with effective treatment.

Lizz received the treatment stipulated by MINSAL. Indeed, the same report states that by 2010, 100% of known HIV-positive pregnant women in the country received antiretroviral drugs to reduce the risk of infant transmission. These figures reflect that Lizz could safely have more children.

In 2019, El Salvador’s Ministry of Health reported 26,893 people living with HIV in the country, 34% of whom were women.

Lizz followed her and her baby’s health status at her local hospital, some 18 km south of the country’s capital, and there she was connected to HIV support organisations when she went to her medical appointments.

“I used to go for check-ups at Cojutepeque Hospital, where I joined a support group and feminist non-governmental organisations. He (her ex-partner) was an alcoholic and beat me. I suffered a lot of physical abuse. But by joining these groups I became empowered. I became very empowered,” she says in an energetic tone. When her baby was three months old, she decided to separate and returned to her parents’ home.

At the hospital she met members of the Asociación Atlacatl Vivo Positivo, which works for the rights of people living with HIV. They provided her with a scholarship to finish high school. Psychological therapies and group sessions contributed to her education and empowerment. And she says that after a very difficult healing process, she can now talk more easily about it.

II More women with HIV sterilised

Lizz’s case is not unique. Other HIV-positive women and minors have been systematically sterilised in El Salvador.

In her amparo lawsuit, it was found that “in hospital practice, girls and adolescents are sterilised with the sole requirement that they sign an authorisation form to that effect”. In the ruling to which Alharaca had access, it is documented that one of the doctors questioned in the process said that “a minor under twelve years of age can be sterilised according to family planning regulations”.

The Technical Guide for Family Planning Care (GTAPF), mentioned in the amparo, does not stipulate that sterilisations of certain patients on the basis of age are allowed, but only requires the patient’s informed consent.

Lizz’s case was brought to the judiciary thanks to the Asociación Nacional de Personas Positivas Vida Nueva (ANP+VN), which focuses on reducing HIV disease in El Salvador.

Together with other civil society organisations and authorities, they participated in conducting the People Living with HIV Stigma Index (INDEX) 2019, interviewing patients in 19 hospitals of the public health system.

The report documented that 23 out of 514 people surveyed were sterilised without their knowledge or consent in the past year. All of those who said they had been sterilised were women. Most of them are poor and have little access to education, says Catherine Serpas, executive director of ANP+VN.

The same study found that 7.2 per cent of respondents were advised not to have children and 5.6 per cent said they were pressured, encouraged or induced to become permanently sterilised through tubal ligation or vasectomy.

Serpas added that the study also found three more cases of minors recounting their experience.

“It was alarming to come across cases of forced sterilisation. The first case we collected was from a woman who experienced this in 1998. Also, here we found cases of girls, minors,” says Serpas. She says that the association did not keep records of all of them, but after contacting some women, many decided not to participate in legal proceedings for fear of stigma.

One of those who did manage to follow up was Lizz, after conducting the INDEX 1.0 study. “The case happened in 2010, but she only spoke about it in 2014,” she explained.

III The legal battle
Organisations protecting the rights of people with HIV are often part of support groups like the one Lizz attended. There she met peers who had gone through the same thing and were persuaded by medical staff to be sterilised. This motivated her to speak out and start a legal process with the support of ANP+VN.

In 2014, they filed an injunction seeking recognition of the violation of Lizz’s reproductive health rights and HIV-related discrimination by medical staff at the National Women’s Hospital “Dr. María Isabel Rodríguez”.

A key element in bringing the case was to have the medical file, which they requested from the hospital through the Institute for Access to Public Information (IAIP), but were denied. Until they were taken to the amparo trial, the hospital authorities handed over the file, which had no evidence to justify the sterilisation.

Lizz’s defence had access to statements from some of the medical staff that it made “no sense” for people with HIV to continue having babies.

The hospital director denied before the Chamber any act of HIV discrimination or that the patient was forced to undergo sterilization.

The Constitutional Chamber declared in 2015 that there had been “violation of her fundamental rights to reproductive health, reproductive self-determination and personal integrity – in relation to the fact that, being a minor, and therefore not having full capacity to give her informed consent to be sterilised”.

“We did manage to prove that there was discrimination (on the grounds of HIV), but the Court did not admit it,” said Crissia Pérez, her lawyer and legal representative.

The Chamber’s ruling ordered the promotion of a process for material and moral damages and guaranteed adequate psychological treatment to overcome the consequences of the act of sterilisation.

IV Maternity. A right denied

Lizz suffered from recurrent bouts of depression. After the trial she wanted to regain her fertility.

Surgical sterilisation is a procedure in which the fallopian tubes, which carry the egg from the ovary to the uterus, are blocked. This can be by tying and cutting the tubes, by cauterisation, or closure with a ring or clamp.

About 20% of sterilised women regret their decision, but there are cases that cannot be reversed. One of them was Lizz’s.

“There are different ways of cutting the tubes, but the cut the doctor made was flush. There was no way to reconstruct the tubes. We interpret this as a practice of violence and an act against humanity,” says Catherine Serpas.

Between January 2013 and July 2021, 36 sterilisations were performed on women who verified delivery with a primary diagnosis of HIV out of a total of 280 deliveries in the country’s public hospitals, according to MINSAL data provided through the Institute for Access to Public Information (Instituto de Acceso a la Información Pública).

***

A gynaecologist working for the public health system, whose name she wishes to withhold for her own safety, warns that it is a moot point to recommend that a woman with HIV should not have children.

“If you go back to the 1980s, a diagnosis of HIV infection was practically a death foretold. Today we have the facility that there are various support programmes for these patients, including antiretroviral therapy, screening tests and social and psychological support groups,” she explains.

She says that if the patient is responsible for her health and her medication, she can become pregnant and have her pregnancy monitored regularly.

“Now, if the situation is different with a patient who has had poor adherence to her treatment or is irresponsible in her controls, who has uncontrolled secondary diseases or a poor prognosis,” she warns, “it becomes necessary to avoid pregnancy to prevent maternal or foetal complications.

Serpas explains that reproductive health issues are not seen as a problem. “This happens because we live in a world that is seen as totally masculine, especially on issues such as HIV,” she says.

ANP+VN often receives complaints about the lack of support in terms of family planning, she adds. “There is still a belief that the person is diagnosed and forgets about their sex life… We have found that when it comes to cytology (testing for the human papillomavirus, which causes cervical cancer) they have been mistreated by health staff, always with the interpretation ‘why are you still having sex’. The HIV response has evolved, but the thinking is still poor.

IV Migration
Lizz not only faced obstetric violence in her home country, during the trial she also received anonymous phone calls threatening her life. During her visits to the hospital for psychological treatment, medical staff tried to persuade her to drop her lawsuit.

The Head of the HIV and Human Rights Department of the Human Rights Ombudsman’s Office, Jaime Argueta, acknowledged that “there is no system of protection that can give guarantees to the person who has had the courage to file a complaint, to protect her against the state itself. She even began to be questioned when she received her treatment”.

Stigma is becoming less and less common in the health and workplace, she says, but “HIV testing is still required for employment as part of a battery of tests”.

At the community level, he warns that there is still a lot of discrimination and people’s diagnoses are disclosed in the places where they live.

“Maybe they work in a beauty salon and someone starts spreading the diagnosis and they lose their customers. Or they sell any kind of ready-made food for consumption and their livelihoods are also affected,” she said.

Lizz lived in an area declared to be at high risk of gang violence. This became another reason for her to migrate to the United States with her daughter and her current partner. There, more than 10,000 kilometres away from the country that expelled her, she is now trying to rebuild her life.

“I wanted a better life for my daughter. Fear also played a part in my decision to migrate,” she said.

V A new life
Despite her irregular migration status, Lizz has managed to access retroviral treatment through a protocol at a research centre in the United States, which she accessed through a hospital.

For now she is working, studying English and wants to go back to university to study law to help others: “My dream is to work in an organisation that helps with human rights or migration”.

According to the International Community of Women Living with HIV and AIDS (ICW Latina), in El Salvador the legal framework that establishes sanctions for health personnel in the case of forced sterilisation of women with HIV has a positive rating, that is, according to this organisation, doctors do receive penalties in these cases. However, those who attended Lizz’s case did not receive any penalty.

At the close of this investigation, an interview was requested with the head of the National STI/HIV/AIDS Programme, Dr Ana Isabel Nieto Gómez, to find out her position on Lizz’s case, but no response was received. Dr. Nieto was in the same position in 2010, when Lizz was forcibly sterilised.

Nieto is now an official in the government of President Nayib Bukele. His regime has been criticised for lacking accountability, giving little access to the press and declaring public information “confidential”.

ANP+VN currently works to provide legal support, training, psychological care, job reinsertion and alternative income generation for people living with HIV. It also has a close relationship with support groups for people with HIV in the national hospital network. Hundreds of people have benefited from its projects. Their lawyer shared that when the press covered Lizz’s case, they became aware of more cases that they could follow up and bring to justice if they had the funds.

El Salvador forzó la esterilización de mujeres con VIH

Cuando Lizz se enteró de que estaba embarazada, también le informaron que tenía VIH. Al momento de parir a su única hija, a la edad de 17 años, fue esterilizada de manera forzada por el personal médico de uno de los principales hospitales públicos de El Salvador. La Sala de lo Constitucional en la Corte Suprema del país centroamericano solo reconoció que se violó su derecho de salud reproductiva. A once años de lo ocurrido, mantiene el deseo de volver a ser madre.

Lizz había recibido meses antes de forma simultánea la noticia de su embarazo y el resultado positivo a la prueba del virus de inmunodeficiencia humana (VIH). Asegura que le preocupaba más la noticia de su embarazo que el diagnóstico del virus

Una mañana de diciembre de 2010, Lizz* sintió en su vientre que su bebé pateaba fuerte y con ello exigía su llegada al mundo. Su embarazo, marcado por la desesperanza de un diagnóstico imprevisto, estaba por llegar a término.

Desde su llegada al Hospital Nacional de la Mujer “Dra. María Isabel Rodríguez”, el más importante para la atención de la mujer en El Salvador, personal médico le preguntó si quería ser esterilizada, pero Lizz respondió que no. Por su condición de VIH le tenían que hacer una cesárea y en la noche fue llevada a la sala de operaciones.

Minutos antes de que se le aplicara la anestesia para practicarle la cesárea, una enfermera le preguntó de nuevo si se iba a esterilizar y le entregó un formulario para autorizar el procedimiento. Lizz firmó sin haber sido informada plenamente de las consecuencias.

A once años de lo ocurrido, habla sobre ese día a través de una videollamada. Hace una pausa, quita la mirada de la pantalla y dice: «prácticamente me iban a dejar morir, me dijeron que si no firmaba no me iban a atender. Yo firmé porque no soportaba el dolor».

Después de dar a luz a su única hija, a Lizz le fue mutilada una parte de su órgano reproductivo en una intervención quirúrgica para impedir que volviera a tener hijos cuando sólo tenía 17 años.

Cuatro años después, el caso de Lizz fue llevado a la Sala de lo Constitucional de la Corte Suprema de El Salvador, donde se comprobó que no tenía la capacidad plena para otorgar su consentimiento informado para ser esterilizada por el hecho de ser menor de edad.

I Un pilar de apoyo

Cuando Lizz tenía apenas 16 años, tuvo una relación con un hombre ocho años mayor que ella. A los pocos meses, comenzó a sentir malestar y dolores de cabeza intensos. Fue al médico en la comunidad de Cojutepeque, a menos de una hora de la capital, y después de hacer estudios le dijeron que estaba embarazada y que también era portadora de VIH.

“En ese momento lo que más me preocupó fue estar embarazada. No dimensioné el diagnóstico de VIH”, relata.

Cuando le dio la noticia a su pareja, él no se sorprendió. Ya sabía que era portador del virus y le ofreció vivir en pareja. Lizz salió de la casa de sus padres y suspendió sus estudios. Hoy considera que quedó embarazada por un acto de violación porque aún era menor de edad.

De su comunidad tuvo que ir los siguientes meses al Hospital de la Mujer, el único para atención materna en el país, donde recibió un tratamiento de retrovirales. Al nacer, su bebé nació con diagnóstico negativo. Estaba libre del virus.

El virus de la inmunodeficiencia humana ataca al sistema inmunitario y debilita los sistemas de defensa contra las infecciones y contra determinados tipos de cáncer. Se transmite a través del intercambio de líquidos corporales de la persona infectada, como la sangre, la leche materna, el semen o las secreciones vaginales.

Los datos del Estado reflejan que las probabilidades de que un menor se infecte de VIH al momento de su nacimiento son muy bajos. Según el Ministerio de Salud de El Salvador (MINSAL) uno de cada 100 bebés nacidos de madres con VIH son diagnosticados con el virus. Estos datos coinciden con los reflejados en el Programa Conjunto de las Naciones Unidas sobre el VIH/Sida ONUSIDA, donde se asegura que el riesgo de que una mujer con VIH le transmita el virus a su hijo se reduce a un 5 % o menos con un tratamiento eficaz.

Lizz recibió el tratamiento estipulado por el MINSAL. Incluso, el mismo informe asegura que para el año 2010 el 100 % de embarazadas con VIH conocidas en el país, recibieron medicamentos antirretrovirales para reducir el riesgo de transmisión infantil. Estas cifras reflejan que Lizz podía tener más hijos de forma segura.

En 2019, el Ministerio de Salud de El Salvador reportó 26,893 personas vivas con VIH en el país, de ellas el 34 % eran mujeres.

Lizz dio seguimiento a su estado de salud y el de su bebé en su hospital local, unos 18 km al sur de la capital del país, y ahí tuvo conexión con organizaciones de apoyo a personas con VIH cuando iba a sus citas médicas.

“Yo iba a controles al Hospital de Cojutepeque, ahí me uní a un grupo de apoyo y a organizaciones feministas no gubernamentales. Él (su expareja) era un hombre alcohólico y me golpeaba. Sufrí mucho abuso físico. Pero al unirme a estos grupos me empoderé. Me empoderé muchísimo”, dice en tono enérgico. Cuando su bebé cumplió tres meses, decidió separarse y volvió a casa de sus padres.

En el hospital conoció a integrantes de la Asociación Atlacatl Vivo Positivo, que trabaja a favor de los derechos de las personas con VIH. Ellos le brindaron una beca para terminar sus estudios de educación media. Las terapias psicológicas y las sesiones grupales contribuyeron a su formación y empoderamiento. Y asegura que después de un proceso de sanación muy difícil, ahora puede hablar con mayor facilidad sobre el tema.

II Más mujeres con VIH esterilizadas

El caso de Lizz no ha sido el único. Otras mujeres con VIH y menores de edad han sido esterilizadas de forma sistemática en El Salvador.

En su juicio de amparo, se comprobó que “en la práctica hospitalaria se esteriliza a niñas y adolescentes con el único requisito que estas suscriban un formulario de autorización para tal efecto”. En el fallo al que tuvo acceso Alharaca, se documenta que una de las doctoras interrogadas en el proceso dijo que «una menor de doce años de edad puede ser esterilizada según la normativa de planificación familiar».

La Guía Técnica de Atención en Planificación Familiar (GTAPF), mencionada en el amparo, no estipula que exista esterilizaciones a ciertos pacientes en razón de edad, únicamente exige que haya un consentimiento informado del paciente.

El caso de Lizz fue llevado al Poder Judicial gracias a la Asociación Nacional de Personas Positivas Vida Nueva (ANP+VN), enfocada en la reducción de la morbilidad del VIH en El Salvador.

Junto con otras organizaciones de la sociedad civil y autoridades, participaron en la realización del Índice de Estigma en Personas con VIH (INDEX) 2019, haciendo entrevistas a pacientes en 19 hospitales del sistema público de salud.

En el Informe se documentó que 23 de 514 personas encuestadas fueron esterilizadas sin su conocimiento o su consentimiento en el último año. Todas las que afirmaron este hecho eran mujeres. La mayoría de ellas son de escasos recursos económicos y tienen poco acceso a educación, señala Catherine Serpas, directora ejecutiva de ANP+VN.

El mismo estudio reflejó que a un 7.2 % de las personas encuestadas le aconsejaron no tener hijos y un 5.6 % menciona que fue presionado, motivado o inducido para esterilizarse de forma permanente por medio de ligadura de trompas o vasectomía.

Serpas añadió que en el estudio también encontraron tres casos más de menores de edad que contaban su experiencia.

“Fue alarmante encontrarnos con casos de esterilizaciones forzadas. El primer caso que recolectamos fue de una mujer que vivió esto en 1998. Además, aquí encontramos casos de niñas, menores de edad”, expresa Serpas. Ella dice que la asociación no guardó registro de todos, sin embargo, al realizar contacto con algunas mujeres, muchas decidieron no participar en procesos legales por miedo al estigma.

Una de las que sí lograron dar seguimiento fue Lizz, luego de realizar el estudio INDEX 1.0. “El caso ocurrió en 2010, pero ella habló de este hecho hasta 2014”, explicó.

III La batalla legal

Las organizaciones de protección de los derechos de personas con VIH suelen formar parte de los grupos de ayuda como a los que asistía Lizz. Ahí conoció a compañeras que pasaron por lo mismo y que fueron persuadidas por el personal médico para ser esterilizadas. Eso la motivó a hablar e iniciar un proceso legal con el acompañamiento de ANP+VN.

En 2014 promovieron un amparo para que se reconociera la violación de los derechos de salud reproductiva de Lizz y discriminación en razón del VIH por parte del personal médico del Hospital Nacional de la Mujer «Dra. María Isabel Rodríguez».

Un elemento clave para llevar el caso era tener el expediente médico, el cual solicitaron al hospital por medio del Instituto de Acceso a la Información Pública (IAIP), pero les fue negado. Hasta que fueron llevadas al juicio de amparo, las autoridades del hospital entregaron el expediente, el cual no tenía pruebas que justificaran la esterilización.

La defensa de Lizz tuvo acceso a declaraciones de parte del equipo médico que señalaban que “no tenía sentido” que las personas con VIH siguieran teniendo bebés.

El director del hospital negó ante la Sala cualquier acto de discriminación por VIH o que se haya forzado a la paciente para ser sometida a esterilización.

La Sala de lo Constitucional declaró en 2015 que sí hubo «vulneración de sus derechos fundamentales a la salud reproductiva, a la autodeterminación reproductiva y a la integridad personal —con relación al hecho de que, siendo menor de edad, y por lo tanto no teniendo la capacidad plena para otorgar su consentimiento informado para ser esterilizada».

“Sí logramos probar que hubo discriminación (en razón de VIH), pero la Sala no lo admitió”, lamentó su abogada y apoderada legal Crissia Pérez.

En el fallo de la Sala se ordenó la promoción de un proceso por los daños materiales y morales y garantizar un tratamiento psicológico adecuado para superar las secuelas por el acto de esterilización.

IV Maternidad. Un derecho negado

Lizz sufrió cuadros de depresión recurrentes. Después del juicio quiso recuperar su fertilidad.

La esterilización quirúrgica es un procedimiento en el que las trompas de Falopio, que transportan el óvulo desde el ovario hasta el útero, se bloquean. Esto puede ser por atadura y corte de los conductos, por cauterización, o cierre con un anillo o grapa.

Un 20 % de las mujeres esterilizadas se arrepiente de su decisión, pero hay casos que no se pueden revertir. Uno de ellos fue el de Lizz.

«Hay diferentes tipos de cortar las trompas, pero el corte que le hizo el médico era al ras. No había forma de reconstruir las trompas. Nosotros interpretamos esto como una práctica de violencia y un acto de lesa humanidad», señala Catherine Serpas.

Entre enero de 2013 hasta julio de 2021 se realizaron 36 esterilizaciones en mujeres que verificaron parto con un diagnóstico principal VIH de un total de 280 partos en los hospitales públicos del país, según datos del MINSAL brindados por medio del Instituto de Acceso a la Información Pública.

***

Una ginecóloga que trabaja para el sistema de salud público, cuyo nombre desea omitir para resguardar su seguridad, advierte que es una temática discutible el recomendar a una mujer con VIH no tener hijos.

“Si nos remontamos a los años ochenta, el diagnóstico de infección por VIH era prácticamente una muerte anunciada. Hoy tenemos la facilidad de que hay diversos programas de apoyo para estos pacientes, que incluyen la terapia antirretroviral, exámenes de control y grupos de apoyo social y psicológico”, explica.

La médica asegura que si la paciente es responsable de su salud y sus medicamentos, puede embarazarse y llevar el control periódico de su embarazo.

“Ahora, si el panorama es diferente con una paciente que ha tenido poca adherencia a su tratamiento o sea irresponsable en sus controles, que tenga enfermedades secundarias no controladas o de mal pronóstico», advierte, «se vuelve necesario evitar el embarazo para evitar complicaciones maternas o fetales”.

Serpas explica que los temas de salud reproductiva no son vistos como un problema. “Eso pasa porque vivimos en un mundo que se ve totalmente masculino, y más, en temas como el VIH”, dice.

ANP+VN recibe con frecuencia reclamos sobre la falta de apoyo en términos de planificación familiar, agrega. “Todavía se cree que la persona recibe el diagnóstico y se olvida de su vida sexual… Hemos detectado que a la hora que se les hace la citología (prueba de detección del virus del papiloma humano, que causa el cáncer de cérvix) han recibido maltrato por parte del personal de salud, siempre con la interpretación de ‘¿por qué sigue teniendo relaciones sexuales?’. La respuesta del VIH ha evolucionado, pero el pensamiento sigue siendo mediocre”.

IV Migración

Lizz no solo enfrentó la violencia obstétrica en su país, durante el juicio también recibió llamadas anónimas donde la amenazaban con atentar contra su vida. En sus visitas al hospital para recibir tratamiento psicológico, hubo personal médico que la intentó persuadir para que desistiera en su demanda.

El Jefe Departamento de VIH y Derechos Humanos de la Procuraduría General de Derechos Humanos, Jaime Argueta, reconoció que “no existe un sistema de protección que pueda dar garantías a la persona que ha tenido el valor de presentar la denuncia, para protegerla contra el mismo estado. Incluso, ella empezó a ser cuestionada al momento de recibir su tratamiento».

Cada vez es menos frecuente es el estigma en ámbito de salud o en el ámbito laboral, dice, pero aún se pide la “prueba de VIH para el ingreso a un empleo como parte de la batería de exámenes”.

En el ámbito comunitario, advierte que todavía hay mucha discriminación y se divulgan los diagnósticos de personas en los lugares donde ellos viven.

“Tal vez trabajan en una sala de belleza y alguien empieza a divulgar el diagnóstico y pierden sus clientes. O venden cualquier tipo de alimentos ya preparados para el consumo y también son afectadas en sus formas de vida”, expuso.

Lizz vivía en una zona declarada de alto riesgo de violencia por pandillas. Esto se convirtió en una razón más que la llevó a migrar a Estados Unidos junto con su hija y su actual pareja. Allá, a más de 10 mil kilómetros del país que la expulsó, ahora intenta rehacer su vida.

“Quería una vida mejor para mi hija. El miedo también tuvo que ver en mi decisión de migrar”, expresó.

V Una nueva vida

A pesar de su condición migratoria irregular, Lizz ha logrado tener acceso a un tratamiento de retrovirales a través de un protocolo en un Centro de Investigación en Estados Unidos, al cual accedió por medio de un hospital.

Por ahora trabaja, estudia inglés y desea regresar a la Universidad a estudiar leyes para ayudar a otras personas: “Mi sueño es trabajar en una organización que ayude en los derechos humanos o migración”.

Según la Comunidad Internacional de Mujeres viviendo con VIH Sida (ICW Latina), en El Salvador el marco legal que establece sanciones para el personal sanitario en el caso de la esterilización forzada a las mujeres con VIH tiene una calificación positiva, es decir, según esta organización los médicos sí reciben penalidad ante estos casos. Sin embargo, los que atendieron el caso de Lizz no recibieron ninguna penalidad.

Al cierre de esta investigación se solicitó una entrevista con la jefa del Programa Nacional de ITS/VIH/SIDA, Dra. Ana Isabel Nieto Gómez, para conocer su postura respecto al caso de Lizz, sin embargo no se recibió respuesta. La doctora Nieto fungía en ese mismo cargo en 2010, cuando Lizz fue esterilizada de forma forzosa.

En la actualidad Nieto es funcionaria del Gobierno del presidente Nayib Bukele. Su régimen ha sido señalado por nula rendición de cuentas, dar poco acceso a la prensa y por declarar “confidencial” información pública.

En la actualidad ANP+VN trabaja para brindar apoyo legal, capacitaciones, atención psicológica, reinserción laboral y generación de alternativas de ingresos para personas con VIH. Además, tiene estrecha relación con los grupos de apoyo de personas con VIH de la red hospitalaria nacional. Cientos de personas se han visto beneficiadas por sus proyectos. Su abogada compartió que cuando la prensa cubrió el caso de Lizz, tuvieron conocimiento de más casos a los que podrían dar más seguimiento y llevar a la justicia si contaran con los fondos.

Russia: Medical documents showing negative HIV status and no drug addiction required for stays over 90 days

Migrants may be required to provide the Ministry of Internal Affairs with a certificate of the absence of HIV infection

Automated translation – For original article in Russian, please scroll down

MOSCOW, November 19. / TASS /. Labor migrants and foreign citizens who have arrived in Russia for a period of more than 90 days may be obliged to provide the Ministry of Internal Affairs with medical documents showing the absence of drug addiction and HIV infection from December 29. This follows from the draft order prepared by the Ministry of Internal Affairs of the Russian Federation, which was reviewed by TASS.

“To approve the procedure for submission by foreign citizens and stateless persons who arrived in the Russian Federation for purposes not related to the implementation of labor activities, for a period exceeding 90 calendar days, or for the purpose of labor activity, to the territorial body of the Ministry of Internal Affairs of the Russian Federation <…> documents confirming the passage of a medical examination for the presence or absence of the fact of their use of narcotic drugs or psychotropic substances without a doctor’s prescription or new potentially dangerous psychoactive substances, infectious diseases that pose a danger to others, <…> and a disease caused by the human immunodeficiency virus (HIV -infection) “, – the document says. At the same time, it is noted that “this order comes into force on December 29, 2021”.

As follows from the document, foreigners must submit medical documents to the Ministry of Internal Affairs within 30 days from the date of expiration of the previously issued medical documents confirming that they have passed a medical examination. In the event that a foreign citizen has not reached the age of 18 or is recognized by a court as incompetent, documents can be submitted by one of his parents, guardians or trustees.

“Medical documents can be submitted at the place of residence of a foreign citizen on paper – directly to the migration department of the territorial body of the Ministry of Internal Affairs of Russia, or to an enterprise or an authorized organization, or in the form of an electronic document signed with an enhanced qualified electronic signature, using the federal state information the system “A single portal of state and municipal services (functions)” to the territorial body of the Ministry of Internal Affairs of Russia, “the draft order says.

In the event that the documents are drawn up in a foreign language, then they must be translated into Russian, the correctness of which must be notarized. Upon admission, the authorized person must check the full compliance of the documents with the established standards, and then issue a certificate of receipt. At the same time, if a migrant submits medical documents in electronic form, then an electronic message is sent to him about their acceptance no later than the working day following the day they were received. Subsequently, information about the receipt of medical documents is entered into the information system of the Ministry of Internal Affairs of Russia, intended for the provision of public services, within three working days from the date of their receipt.

Мигрантов могут обязать предоставлять в МВД справки об отсутствии ВИЧ-инфекции

Приказ может вступить в силу 29 декабря

МОСКВА, 19 ноября. /ТАСС/. Трудовых мигрантов и иностранных граждан, прибывших в Россию на срок более 90 дней, могут обязать с 29 декабря предоставлять в МВД медицинские документы об отсутствии у них наркозависимости и ВИЧ-инфекции. Это следует из подготовленного МВД РФ проекта приказа, с которым ознакомился ТАСС.

“Утвердить порядок представления иностранными гражданами и лицами без гражданства, прибывшими в РФ в целях, не связанных с осуществлением трудовой деятельности, на срок, превышающий 90 календарных дней, либо в целях осуществления трудовой деятельности, в территориальный орган МВД РФ <…> медицинских документов, подтверждающих прохождение медицинского освидетельствования на наличие или отсутствие факта употребления ими наркотических средств или психотропных веществ без назначения врача либо новых потенциально опасных психоактивных веществ, инфекционных заболеваний, представляющих опасность для окружающих, <…> и заболевания, вызываемого вирусом иммунодефицита человека (ВИЧ-инфекции)”, – говорится в документе. При этом отмечается, что “настоящий приказ вступает в силу с 29 декабря 2021 года”.

Как следует из документа, представить медицинские документы в МВД иностранцы должны в течение 30 дней со дня истечения срока действия ранее выданных медицинских документов, подтверждающих прохождение ими медицинского освидетельствования. В случае, если иностранный гражданин не достиг 18 лет или признан судом недееспособным, документы может представить один из его родителей, опекунов или попечителей.

“Медицинские документы могут быть представлены по месту пребывания иностранного гражданина на бумажном носителе – непосредственно в подразделение по вопросам миграции территориального органа МВД России, либо в предприятие или уполномоченную организацию, либо в форме электронного документа, подписанного усиленной квалифицированной электронной подписью, с использованием федеральной государственной информационной системы “Единый портал государственных и муниципальных услуг (функций)” в территориальный орган МВД России”, – отмечается в проекте приказа.

В том случае, если документы составлены на иностранном языке, то они подлежат переводу на русский язык, верность которого должна быть нотариально засвидетельствована. Уполномоченное лицо при приеме должно проверить полное соответствии документов установленным нормам, после чего выдать справку об их получении. При этом, если мигрант подает медицинские документы в электронном виде, то ему направляется электронное сообщение об их приеме не позднее рабочего дня, следующего за днем их получения. В последующем сведения о получении медицинских документов вносятся в информационную систему МВД России, предназначенную для предоставления государственных услуг, в течение трех рабочих дней с даты их получения.

US: Supreme Court agrees that sex offender law struck down by Louisiana Supreme Court is unconstitutional

Supreme Court Declines To Hear Louisiana’s Defense of a Law That Stamped ‘SEX OFFENDER’ on Driver’s Licenses

The policy imposed an additional form of ritual humiliation on a reviled category of people without any plausible public-safety justification.

The U.S. Supreme Court today declined to hear Louisiana’s appeal of a decision against its 2006 law requiring that people on the state’s sex offender registry carry IDs or driver’s licenses that say “SEX OFFENDER” in orange capital letters. A year ago, the Louisiana Supreme Court concluded that the requirement amounted to compelled speech and could not be justified by the state’s legitimate interest in protecting public safety. In addition to raising First Amendment issues, Louisiana’s now-moribund law illustrates the longstanding tendency to impose additional punishment on people convicted of sex offenses in the guise of regulation.

The registries themselves, which require sex offenders to regularly report their addresses to local law enforcement agencies so that information can be made publicly available in online databases that also include their names, photographs, and physical descriptions, are primarily punitive, exposing registrants to ostracism, harassment, and violence while impeding their rehabilitation by making it difficult to find employment and housing. There is little evidence that the sort of public notification practiced by every state delivers benefits that outweigh those costs. Louisiana’s experiment in ritual humiliation, which branded registrants with orange letters they had to display in every transaction that required producing a government-issued ID, compounded those costs without offering any plausible benefits.

One problem with sex offender registries is that they cover a wide range of crimes, including many that do not involve violence, force, or physical contact. While people tend to imagine rapists or child molesters when they hear the term sex offender, the reality can be quite different, in ways that are important in assessing the danger that a person might pose to the general public or to people in particular age groups.

In Louisiana, for example, mandatory registration applies not only to crimes like rape and sexual assault but also to nonviolent offenses, such as voyeurism, possession of child pornography, consensual sex between adults who are closely related, sex between high school teachers and students (even when the student has reached the age of consent), and employment of a minor in “any practice, exhibition, or place, dangerous or injurious to the life, limbs, health, or morals of the minor.” Robert Suttle, who posted the picture of his driver’s license shown above, was forced to register because he was convicted of intentionally exposing someone to HIV, which resulted in a six-month prison sentence. After a bad breakup, he says, his former partner told the police he had not been informed of Suttle’s HIV status.

The second line of each record in the state’s registry shows the offender’s “tier,” which corresponds to various crimes classified by severity, ranging from Tier 1 (least serious, requiring registration for 15 years) to Tier 3 (most serious, requiring lifetime registration). Further down in the record, you can see the statute under which the registrant was convicted (e.g., “carnal knowledge of a juvenile”), which still omits potentially important details.

The driver’s license warning required by Louisiana’s law did not provide even that much information, meaning that anyone who saw it was invited to assume the worst. Tazin Hill, the man who challenged the law, completed his prison sentence in 2013. He was convicted of having sex with a 14-year-old when he was 32, which placed him in Tier 1. But anyone who saw his license had no way of knowing the nature or severity of his offense. Rebelling at this government-imposed badge of shame, Hill excised the “SEX OFFENDER” label from his license and covered the gap with clear tape, which resulted in the criminal charges that gave rise to this case.

Another problem with sex offender registries is the mistaken assumption that people who fall into this broad category are more likely to commit additional crimes than, say, robbers, burglars, or arsonists. When it upheld mandatory “treatment” of sex offenders in prison, for example, the Supreme Court relied on a highly dubious recidivism estimate that was repudiated by its original source but has nevertheless been cited repeatedly by lower courts. The “SEX OFFENDER” stamp on Louisiana driver’s licenses, even more than the registry, promoted such erroneous fears by implying that the bearer posed an ongoing threat, no matter the details of his crime, how long ago it occurred, or how he had behaved since he completed his sentence.

The empirically unjustified belief that sex offenders are highly prone to recidivism is especially inaccurate and damaging when applied to people convicted as minors, who are included in Louisiana’s registry and therefore had to carry “SEX OFFENDER” IDs or driver’s licenses. Judy Mantin, who this year testified before a state legislative committee that was considering revisions to Louisiana’s law in light of the state Supreme Court’s ruling, said her son “made a mistake” when he was 14 but today is “a very productive citizen.” She argued that “our children deserve a second chance in life.”

Legislators ostensibly have made the same judgment regarding adults convicted of sex offenses, who have notionally paid their debt to society once they complete their criminal sentences. Yet legislators imply otherwise by imposing additional burdens on those people for decades after their official punishment. In this case, any interaction involving a driver’s license—e.g., with cashiers, hotel clerks, bank tellers, employers, landlords, election officials, or airport security screeners—became a new invitation to close-range fear and loathing.

What was the justification for this requirement, which added to the burdens imposed by registration, public notification, and residence restrictions? The state argued that the “SEX OFFENDER” label facilitated law enforcement by alerting police officers to a person’s status. But police already could readily check that by consulting the state’s database. And as the Louisiana Supreme Court noted, the state could have eliminated even that slight inconvenience with a more discreet label: “A symbol, code, or a letter designation would inform law enforcement that they are dealing with a sex offender and thereby reduce the unnecessary disclosure to others during everyday tasks.”

Such a solution would not be adequate, the state argued in its petition to the U.S. Supreme Court, because “the Louisiana Legislature concluded that the public, and not merely law enforcement, needs to know of a sex offender’s status under limited circumstances.” Such as?

“A property manager needs to know a sex offender’s status when leasing an apartment—or the manager might incur liability if a tenant is raped on the premises,” the petition said. “A church or Red Cross facility may need to know a person’s status as a sex offender when providing shelter from a storm. People trick or-treating on Halloween may need a quick way to verify that their children are safe from predators.”

During a lower-court hearing, one of the state’s lawyers offered another example:

If I’m deciding who I want to be my babysitter and I know that I don’t want a sex offender to babysit my children, I say, “OK. I’d like to see your ID before I allow you to babysit my children.” And, “Oh, it says ‘sex offender.’ I’m not going to hire you.”

The Halloween scenario suggests the state’s desperation, not only because this particular hazard is an urban legend but also because it is difficult to imagine a situation in which parents would demand to see the driver’s licenses of neighbors handing out candy to trick-or-treaters. Even when the concerns are more reasonable, the public registry, for better or worse, already allowed anyone to look up an individual and see if he was listed; that was supposedly the whole purpose of creating a publicly accessible database in the first place.

“Louisiana’s branded-identification regime was an outlier in singling registrants out for public opprobrium,” Hill’s lawyers noted in their brief urging the Supreme Court not to consider the state’s appeal. “Just two other States require identification cards to display phrases like ‘SEX OFFENDER,’ while only six States have laws that require identification cards to include other types of sexual offense disclosure—typically a symbol or statute number recognizable only to law enforcement.”

Even as an outlier, Louisiana’s law suggests how ready politicians are to support practically any burden on sex offenders, whether or not it makes sense as a tool to promote public safety. Policies like these serve no useful purpose, but they do make life harder for a reviled category of people whose punishment never ends.

[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.

Learn how to challenge HIV criminalisation in Africa

Activists and advocates in East and Southern Africa are encouraged to register and participate in a free moderated online course on HIV criminalisation.

If you work with civil society organisations based in Angola, Botswana, Comoros, Democratic Republic of Congo, Eswatini, Lesotho, Kenya, Madagascar, Malawi, Mauritius, Mozambique, Namibia, Seychelles, South Africa, Tanzania, Uganda, Zambia, and Zimbabwe, then this course is for you.

Organised by HIV JUSTICE WORLDWIDE partner, the AIDS and Rights Alliance for Southern Africa (ARASA), the aim of the online course is to increase awareness of the harmful impacts of policies that criminalise people living with HIV and learn how to strengthen advocacy in this area.

The course will start on 13 September 2021 and end on 8 October 2021.

You can apply for the course here.

All applications must be received by no later than the close of business on 30 August 2021.

Successful applicants will be notified by 2 September 2021.

For any questions, please write to Bruce Tushabe at bruce[at]arasa[dot]info and copy communications[at]arasa[dot]info.

To learn more about HIV JUSTICE WORLDWIDE, the global movement to end HIV criminalisation, please visit https://www.hivjusticeworldwide.org/en/

Commentary: An International Pandemic Treaty Should Centre on Human Rights

Published on 10 May 2021 in: The BMJ

The proposed International Pandemic Treaty could be undermined by political posturing and national protectionism—or it could be an opportunity to chart a different global future based on human rights. Those in charge of drafting the treaty must begin with a clear look at the grave abuses that have characterized the COVID-19 pandemic: authoritarian power grabs; continuing monopolies in diagnostics, therapeutics, and vaccines; failure to resource health systems; staggering setbacks for women; and an upsurge in violence, including covid-related hate crimes. Poorer and marginalized communities have borne the heaviest burden of policing; unemployment; and lack of food, health services, and security.

States have all-too-easily sidelined the international human rights framework under cover of emergency responses. This cannot continue. Any treaty should address these key issues:

The right to health—Most of the world lacks COVID-19 diagnostics, medicines, and vaccines. A new treaty should uphold the right to physical and mental health, and acknowledge the right of everyone to the benefits of scientific progress and its applications, including through intellectual property waivers.

An end to weaponizing pandemics—Any new treaty should protect individuals from threat of criminal sanctions linked to infection and reaffirm the Siracusa Principles, which set out clear limits on restrictions of rights during an emergency.

Workers’ rights are human rights—Workers who gave the most in 2020 were protected the least. States should ensure the physical security of health care workers, community health workers and other essential workers, and respect their right to form and join trade unions. Informal sector workers should have the right to continued employment or social security.

Combat gender inequalities—The pandemic has placed a disproportionate burden on women as healthcare professionals, educators, and caregivers; as well as on transgender people and sex workers. States should prioritize social protection, including childcare and sexual and reproductive health services, as well as prevention and response to gender-based violence.

Uphold rights in the digital age—Digital health has boomed during covid-19. A treaty should address the need for universal access to the internet and digital technology, while upholding rights to digital privacy and non-discrimination, and promoting strict regulation of use of health data.

Transparency and trust—The COVID-19 response has been weakened by corruption. A pandemic treaty should ensure states publish detailed information about budgets, expenditures, and procurement on a live portal; as well as the evidence basis for restrictive measures such as lockdowns; and for diagnostics, therapeutics and vaccine approvals. The International Health Regulations require information-sharing about outbreaks: this has been impeded by states silencing whistleblowers. Any treaty must reaffirm the rights to freedom of expression and opinion.

Accountability and community—Any new treaty should not undermine existing human rights. Human rights obligations related to pandemics should be independently monitored by a multi-stakeholder oversight body that meaningfully incorporates civil society. Community expertise and leadership are vital to effective pandemic response: any treaty should recognize, fund, and enable safe environments for community and civil society at all levels.

The COVID-19 pandemic starkly widened inequalities. We must seize this opportunity to reassert the principle of human equality, which must never be compromised; draw on lessons learned from the past year, and chart a better future.

Co-authors: Sara (Meg) Davis is senior researcher, Global Health Centre at the Graduate Institute of International and Development Studies, Geneva, Switzerland. Philip Alston is professor, New York University School of Law and former UN Special Rapporteur on Extreme Poverty and Human Rights, New York, USA. Joseph J. Amon is Clinical Professor and Director of the Office of Global Health at Dornsife School of Public Health, Drexel University, Philadelphia, USA. Edwin J. Bernard is executive director, HIV Justice Network in Amsterdam, the Netherlands. Sarah M. Brooks is programme director, International Service for Human Rights in Geneva, Switzerland. Gian Luca Burci is professor in the International Law Department of the Graduate Institute of International and Development Studies, Geneva, Switzerland. Naomi Burke-Shyne is executive director, Harm Reduction International, in London, UK. Georgina Caswell is programme manager, Global Network of People Living with HIV in Cape Town, South Africa. Mikhail Golichenko is senior policy analyst, HIV Legal Network in Toronto, Ontario, Canada. Anand Grover is director, Lawyers Collective and the former UN Special Rapporteur on the Right to Physical and Mental Health in Mumbai, India. Sophie Harman is professor at the School of Politics and International Relations, Queen Mary University of London, in London, UK. Lu Jun is director of Beijing Yirenping Center in Beijing, China. Rajat Khosla is senior director of research, advocacy and policy at Amnesty International, London, UK. Kyle Knight is senior researcher, Human Rights Watch, Durham, NC, USA. Allan Maleche is executive director, Kenya Ethical and Legal Issues Network on HIV and AIDS (KELIN), Nairobi, Kenya. Tlaleng Mofokeng is UN Special Rapporteur on the Right to Physical and Mental Health. Moses Mulumba is executive director, Center for Health, Human Rights and Development, in Kampala, Uganda. Sandeep Nanwani is chief medical officer, Yayasan Kebaya in Yogyakarta, Indonesia. Mike Podmore is director, STOPAIDS in London, UK. Dainius Puras is a professor at Vilnius University and former UN Special Rapporteur on the Right to Physical and Mental Health in Vilnius, Lithuania. Nina Sun is deputy director, Global Health and assistant clinical professor at the Dornsife School of Public Health, Drexel University, Philadelphia, USA. Nerima Were is deputy director, Kenya Ethical and Legal Issues Network on HIV and AIDS (KELIN), Nairobi, Kenya.

Year in review: Celebrating successes, highlighting the many challenges ahead

This past year has shown us what happens when one pandemic – HIV – is overshadowed by another pandemic, COVID-19. Despite the many lessons learned from our collective advocacy against HIV criminalisation that we and our HIV JUSTICE WORLDWIDE partners highlighted in March, these lessons were mostly ignored by policymakers around the world.

The result was a series of knee-jerk legal, policy and police responses leading to the overzealous policing of people living with HIV and other key and inadequately served populations already subject to existing inequalities in law and policy, which we have been highlighting in our HIV Justice Weekly newsletter since March.

This latest pandemic overshadowed, and in some cases undermined, the work we and others have been doing to ensure a fair, just, rational and evidence-based response towards people living with HIV by the criminal justice system.

This past year we documented at least 90 cases of unjust HIV criminalisation in 25 countries, with Russia and the United States being the worse offenders. Women living with HIV were accused in 25% of those cases. Three of these cases were for breastfeeding. In the United States, more than 50% of those accused in HIV criminalisation cases were people of colour.

2020 also saw Poland passing a new law against COVID-19 that also increased the criminal penalty for HIV exposure, and number of disappointing HIV criminalisation higher court appeals in the US (Ohio), and Canada (Ontario and Alberta) that appeared to ignore science over stigma.

And yet, despite the many difficulties of 2020, the movement to end unjust HIV criminalisation has continued to gain momentum.

In the United States, Washington State modernised its HIV-specific criminal law in March, reducing the ‘crime’ from a felony to a misdemeanour, adding in a number of defences, and eliminating the sex offender registration requirement. Earlier this month, legislators in Missouri published plans to modernise its HIV-specific criminal law next year.

In Europe, Sweden abolished the legal requirement to disclose HIV status in March, the Spanish Supreme Court set an important precedent for HIV criminalisation cases in May, and in June, Scottish police ended the stigmatising practice of marking people living with HIV as ‘contagious’ in their database.

In Francophone Africa, HIV-specific criminal law reform in Benin and across the region is looking likely thanks to a recognition that existing laws do not reflect up-to-date science.

And in Eastern Europe and Central Asia, a process to completely abolish the draconian HIV-specific criminal law in Belarus has begun.

There is still so much more to do, however. Despite these successes, as well as the many milestones the HIV JUSTICE WORLDWIDE movement has achieved since its launch in 2016, we will not rest until everyone living with HIV in all their diversity is treated equally, fairly and justly by all actors of the criminal justice system.