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.

New principles lay out human rights-based approach to criminal law

New legal principles launched on International Women’s Day to advance decriminalization efforts

The International Committee of Jurists (ICJ) along with UNAIDS and the Office of the High Commissioner for Human Rights (OHCHR) officially launched a new set of expert jurist legal principles to guide the application of international human rights law to criminal law.

The ‘8 March principles’ as they are called lay out a human rights-based approach to laws criminalising conduct in relation to sex, drug use, HIV, sexual and reproductive health, homelessness and poverty.

Ian Seiderman, Law and Policy Director at ICJ said, “Criminal law is among the harshest of tools at the disposal of the State to exert control over individuals…as such, it ought to be a measure of last resort however, globally, there has been a growing trend towards overcriminalization.”

“We must acknowledge that these laws not only violate human rights, but the fundamental principles of criminal law themselves,” he said.

For Edwin Cameron, former South Africa Justice of the Constitutional Court and current Inspecting Judge for the South African Correctional Services, the principles are of immediate pertinence and use for judges, legislators, policymakers, civil society and academics. “The 8 March principles provide a clear, accessible and practical legal framework based on international criminal law and international human rights law,” he said.

The principles are the outcome of a 2018 workshop organized by UNAIDS and OHCHR along with the ICJ to discuss the role of jurists in addressing the harmful human rights impact of criminal laws. The meeting resulted in a call for a set of jurists’ principles to assist the courts, legislatures, advocates and prosecutors to address the detrimental human rights impact of such laws.

The principles, developed over five years, are based on feedback and reviews from a range of experts and stakeholders. They were finalized in 2022. Initially, the principles focused on the impact of criminal laws proscribing sexual and reproductive health and rights, consensual sexual activity, gender identity, gender expression, HIV non-disclosure, exposure and transmission, drug use and the possession of drugs for personal use. Later, based on the inputs of civil society and other stakeholders, criminalization linked to homelessness and poverty were also included.

Continued overuse of criminal law by governments and in some cases arbitrary and discriminatory criminal laws have led to a number of human rights violations. They also perpetuate stigma, harmful gender stereotypes and discrimination based on such grounds as gender or sexual orientation.

In 2023, twenty countries criminalize or otherwise prosecute transgender people, 67 countries still criminalize same-sex sexual activity, 115 report criminalizing drug use, more than 130 criminalize HIV exposure, non-disclosure and transmission and over 150 countries criminalize some aspect of sex work.

In the world of HIV, the abuse and misuse of criminal laws not only affects the right to health, but a multitude of rights including: to be free from discrimination, to housing, security of the person, movement, family, privacy and bodily autonomy, and in extreme cases the very right to life. In countries where sex work is criminalized, for example, sex workers are seven times more likely to be living with HIV than where it is partially legalized. To be criminalized can also mean being deprived of the protection of the law and law enforcement. And yet, criminalized communities, particularly women, are often more likely to need the very protection they are denied.

UNAIDS Deputy Executive Director for the Policy, Advocacy and Knowledge Branch, Christine Stegling said, “I welcome the fact that these principles are being launched on International Women’s Day (IWD), in recognition of the detrimental effects criminal law can, and too often does have on women in all their diversity.”

“We will not end AIDS as a public health threat as long as these pernicious laws remain,” she added. “These principles will be of great use to us and our partners in our endeavors.”

Also remarking on the significance of IWD, Volker Türk, High Commissioner for Human Rights, said, “Today is an opportunity for all of us to think about power and male dominated systems.”

His remarks ended with, “I am glad that you have done this work, we need to use it and we need to use it also in a much more political context when it comes precisely to counter these power dynamics.”

“Frankly we need to ask these questions and make sure that they are part and parcel going forward as to what human rights means,” he said.

In conclusion, Phelister Abdalla, President of the Global Network of Sex Work Projects, based in Kenya noted: “When sex work is criminalized it sends the message that sex workers can be abused…We are human beings and sex workers are entitled to all human rights.”

Lesotho high court finds imposition of death sentence solely on the basis of HIV status unconstitutional

Court decision upholds that people living with HIV have the same right to life as all others

Joint news release from the Southern Africa Litigation Centre, AIDS and Rights Alliance for Southern Africa, Lesotho Network of People Living with HIV and AIDS, HIV Legal Network and HIV Justice Network

 

On 25 October 2022, the High Court of Lesotho in the case of MK v Director of Public Prosecutions and Others issued a judgment on a constitutional challenge to certain sections of the Sexual Offences Act that impose mandatory HIV testing on persons accused of sexual offences, and subsequently impose a death sentence on persons convicted of sexual offences solely based on their HIV-positive status.

The case was supported by the Southern Africa Litigation Centre (SALC), AIDS and Rights Alliance for Southern Africa (ARASA), HIV Legal Network – all members of HIV JUSTICE WORLDWIDE (HJWW) Steering Committee coordinated by the HIV Justice Network (HJN) – as well as Kenya Legal & Ethical Issues Network on HIV and AIDS (KELIN). Lesotho Network of People Living with HIV and AIDS (LENEPWHA) was admitted as Amicus Curiae. The petitioner and Amicus Curiae were represented by Advocate Molati, Advocate Mokhathali, Advocate Masaeso, Advocate Mohau (K.C) and Advocate Letuka.

The petitioner challenged the constitutionality of section 32(a)(vii) of the Sexual Offences Act which appeared to impose a mandatory death sentence on people convicted of sexual offences who were HIV-positive and were aware of their status. The petitioner also challenged section 30 of the Act, which requires mandatory HIV testing for persons arrested and charged under the Act. The petitioner argued that the imposition of a mandatory death sentence solely on the grounds of HIV status, and mandatory HIV testing upon arrest, breached the constitutional rights to life, equality and non-discrimination, equal protection of the law, privacy, and dignity and that they contribute to stigma against people living with HIV.

In a judgment written by Justice Makara, the High Court, sitting as a Constitutional Court, declared that section 32(a)(vii) of the Sexual Offences Act was unconstitutional to the extent that it imposes a death sentence solely on the basis of a person’s HIV status, as this was discriminatory and amounted to inhumane treatment. The Court said that people convicted of sexual offences should be sentenced according to the mitigating or aggravating circumstances rather than HIV status alone, and that the law should be interpreted so as not to require a mandatory death sentence for a person living with HIV.

“People living with HIV have the right to life, as all people do. Imposing the death penalty based on a person’s HIV-positive status is the most extreme form of discrimination possible. We welcome the Lesotho High Court’s decision to end this terrible human rights violation.” Edwin J Bernard, HIV Justice Network, global coordinator, HIV JUSTICE WORLDWIDE.

“While recognizing the serious impact of sexual violence, the judgment is an acknowledgment that the over-broad use of criminal laws and sanctions solely based on HIV status is unjust and not justified by a scientific and human-rights based approach” Maketekete Alfred Thotolo, Executive Director, LENEPWHA.

 

Download the pdf of the news release here

 

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

HIV criminalisation highlights at AIDS 2022

The 24th international AIDS conference (AIDS 2022) held in Montreal and virtually between 29 July and 2 August integrated HIV criminalisation throughout multiple sessions – both in the main conference and during pre-conferences, satellites and in the Global Village.

Australian activist, lawyer, Track F rapporteur – and HJN Supervisory Board member – Paul Kidd has provided a thorough overview of many of these sessions in this Twitter thread, which can also be read as a single blog entry here.

Two major campaigns were launched at the conference – one global, and one focused on Canada.

GNP+ and HJN joined with networks representing young people, women, the LGBTI+ community, sex workers and people who use drugs to launch the “Not A Criminal” Campaign to decriminalise HIV non-disclosure, exposure and transmission; same-sex relationships; sex work and drug use. 

As part of the “Not A Criminal” Campaign, we are demanding countries remove bad laws and replace them with evidence-based legislation to protect our communities from criminalisation, discrimination and gender-based violence, and support the creation of independent human rights institutions. Additionally, the campaign calls on United Nations agencies and donors to develop strong, coordinated, and high-profile mechanisms to monitor progress on these member states’ commitments.

“Far from being a legitimate public health tool, criminalisation of our behaviours, choices and identities is about the enforcement of an oppressive morality through policing our bodily autonomy,” HIV Justice Network’s Executive Director Edwin J Bernard said in a press release announcing the campaign. “This punishment of our vulnerability also means we won’t be able to end the HIV epidemic by 2030.” 

The Canadian Coalition to Reform HIV Criminalization (CCRHC) made the most of the spotlight on Canada during the conference and launched its second Community Consensus Statement.  This Statement calls on the Canadian government to change the Criminal Code to limit HIV criminalisation only to very rare cases of intentional transmission using appropriate existing criminal statutes. Canada’s Justice Minister, David Lametti has since announced plans to launch a consultation this October on the criminal legal system’s overly draconian response to HIV non-disclosure.

However, the biggest – and most welcome – surprise of the conference was the recipient of the Elizabeth Taylor Legacy Award which was presented during Saturday’s prime session on HIV and Human Rights. Previous recipients have included Nancy Pelosi, Sharon Stone, Whoopi Goldberg, Michael Jackson and Elton John.

This year’s Elizabeth Taylor Legacy Award was presented posthumously to the late Rosemary Namubiru – recognising her extraordinary contribution to raising awareness of the injustice of HIV criminalisation.

Lillian Mworeko of the International Community of Women Living with HIV – East Africa (ICW-EA) received the award on behalf of Rosemary’s family. Rosemary’s daughter had planned to be there, but – like many Africans – was denied a visa.

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 83rd 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

  1. 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.
  2. 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.