Beyond Blame, our flagship meeting for activists, human rights defenders, criminal legal system and public health system actors, healthcare professionals, researchers, and anyone else working to end HIV criminalisation, is returning for a special eve-of-World AIDS Day edition.
Beyond Blame is a unique opportunity to learn why HIV criminalisation matters, as well as hear about the wide range of initiatives and strategies that have been used by activists, lawyers, networks, and organisations around the world to work towards ending the inappropriate use of criminal law to regulate and punish people living with HIV.
We will be highlighting some of the successes and challenges of the global movement to end HIV criminalisation over the past year, including work on ending the criminalisation of women living with HIV for breastfeeding, exploring whether scientific advances, such as the prevention benefit of treatment (U=U) and Molecular HIV Surveillance, help or hinder our movement and much, much more.
Beyond Blame will take place in English, with interpretation available in French, Russian and Spanish.
The proverb says, “It takes a village to raise a child”. But what if a mother in the village is living with HIV, and some of the villagers stigmatise her? What if that stigma creates a situation where the mother living with HIV is unjustly criminalised because of her HIV status? Then it takes more than a village to get justice for that woman. It takes a global movement to end HIV criminalisation to sensitise and train lawyers and expert witnesses. It takes national communities of women living with HIV to support that woman following her release, and to educate the community in which she lives about HIV.
In 2016, a Malawi court convicted a woman living with HIV of “negligently and recklessly doing an act likely to spread the infection of any disease which is dangerous to life” under section 192 of the Malawi Penal Code. She had attended a village meeting with her baby which she breastfed as usual before passing the child to her grandmother. Another woman then asked her to hold her baby. It was alleged that this child began breastfeeding briefly before the woman realised what was happening. The child’s mother then reported the incident to the police. The woman was arrested and without legal advice or representation, pleaded guilty, was convicted, and sentenced to nine months’ imprisonment with hard labour.
In addition, the accused woman was taking antiretroviral therapy. The chances of HIV transmission through even long-term breastfeeding are very low (which is why WHO guidelines recommend it when access to infant formula and clean water are limited) and the chances of transmission during the brief period the baby allegedly fed were infinitesimally small. In fact, the accused woman’s own child, who was routinely breastfed, has not acquired HIV, calling into question any suggestion that she intended to cause harm to the other woman’s child. Perversely, for a system that unjustly condemned her for risking harm to the other woman’s child, her own baby was imprisoned with her, without any arrangements for appropriate feeding and care, negating any notion that the legal system’s purpose was to protect children.
Following media reports of her initial conviction, numerous individuals and organisations – including HJN and our HIV JUSTICE WORLDWIDE partners, ARASA and SALC – became involved in the case, ultimately changing the outcome for the woman and her family, and laying the groundwork for further anti-HIV stigma advocacy and education in the region. Her story demonstrates the vital role that education, training, strong networks, and community play in the pursuit of HIV justice.
Living with HIV-related stigma
When interviewed at her home in 2019, the woman referred to as “EL” talked about her life:
 The initials EL are used instead of her full name following a court order of anonymity to protect her privacy. The interview took place in 2019, during the village visit described later in this article.
“As kids, there were the two of us — me and my brother. My parents faced challenges raising us. Finding the basic necessities like soap and food was a tall order, let alone talking about going to school. It was difficult to get learning materials as well as proper clothes to wear at school. I worked hard in class but couldn’t get past Standard 5 at primary school. Eventually I dropped out, and my brother did the same, … My daily life was taken up doing house chores just like any other girl in the village, as well as helping my parents with farming. At 16, I got married.”
EL further described how she was diagnosed HIV-positive in 2015 after a de facto compulsory HIV test at an antenatal visit. She already had two children and was pregnant with her third. She had heard about HIV but did not know much about it. EL said that the healthcare workers provided a lot of assistance, giving her accurate information about HIV, including the importance of adhering to her antiretroviral treatment (ARVs).
EL said that she generally enjoyed life in her village, although at times she was subject to stigma and discrimination:
“When I went to fetch water at the community borehole, people would laugh at me, and whenever I wanted to participate in community work, you would find pockets of community members talking ill about me. Some people used to insult me, calling me names. But I persevered because my relatives, including the Village Headman himself, gave me support and always stood by my side.”
Members of EL’s family also faced discrimination. “Due to lack of information, a lot of people thought HIV was hereditary and because I was diagnosed HIV-positive, this meant that all my family members had HIV, and they were discriminated against,” EL said.
EL wonders if more could have been done to help her fight stigma. In particular, EL gained a lot of knowledge about HIV from the counselling she got when diagnosed, but perhaps she could have been better equipped with information to share with people in her community:
“A lot of people don’t know that if you adhere to ARVs, you reduce the risk of transmitting HIV to others. This information needs to be passed on to many people. There are also other issues to do with ARVs. A lot of people don’t have adequate information on the effects of ARVs and at the end of the day, they start pointing fingers at each other, giving people room to start speculating about issues to do with witchcraft.”
EL’s prosecution had repercussions for her whole village. One woman from the community explained:
“I was there and very close to where EL was sitting. Yes, she was carrying another woman’s child. This other woman had given the child to EL for safe keeping while she went to stand in a queue, but honestly speaking, I didn’t see EL breastfeed the child. I just heard some people who were sitting a distance from where we were sitting, as they started pointing accusing fingers at her.”
She said that things moved so fast that before they could think of anything to stop what she called “the rumour.” It had gotten out of hand and people started saying that EL had intentionally breastfed the child to transmit HIV.
After receiving a summons, EL voluntarily turned herself in at the police station. She was accompanied by the Village Headman (her grandfather) who wanted first-hand information about what crime she was alleged to have committed. That same day, police transferred EL to a larger town, where she was remanded for three days. At the age of 29, this was the first time that EL had ever left her village.
Days later, she appeared in court and the charge sheet was read out. EL recounted that she had not understood what was happening and could not make arguments because she had no legal representation. EL agreed with the summary of events as they were described, so she was found guilty and was imprisoned together with her youngest child.
She described life in prison as “hell”:
“After a week, my brother showed up to give me my ARVs. All this talk about a woman with HIV breastfeeding. I breastfed but I also found it tough to feed my baby while in prison because there was no provision of special food for babies. We were eating nandolo (pigeon peas) almost every day with Msima ya Mgaiwa (maize meal). And there was only one toilet for a cell of more than 50 people.”
After some time, relatives and other members of her community started visiting, giving her money she could use to buy soap and food for her baby. “When we heard from our Village Headman that she had been arrested, we were so devastated”, a woman from EL’s village explained. “We raised funds for some members to go and give her support only to learn that she had been transferred to one town, then another, but some of us did manage on several occasions to visit her and offer our support when she was in prison.”
Then, out of the blue, EL received a message that some people had come looking for her. She went to meet them: a lawyer, Wesley Mwafulirwa, and his paralegal. They explained why they were there and asked if she would like them to appeal on her behalf. She accepted enthusiastically. “I was excited but at the same time I was confused because I could not believe that I could be so lucky to have these people come to help me.”
Fighting the charges
Solicitor Wesley Mwafulirwa had volunteered to attend training to address legal barriers to prison health and human rights presented by the Southern African Litigation Centre (SALC). He travelled from Malawi to South Africa to attend the training which addressed useful regional and international mechanisms, and presented insights about legal practice and strategic litigation to support prison health and human rights, particularly for those facing heightened vulnerability to HIV and TB.
At the training, two lawyers spoke about their pro bono work. Wesley remembers one of them, Allan Maleche (Executive Director of KELIN), saying that each participant should take at least one case when they go back to their country. It was a turning point in Wesley’s career.
He had not been home long when he saw an article in the newspaper about an HIV-positive person convicted for trying to spread HIV. That person was EL.
Wesley, who lives in a small town in northern Malawi, drove for more than ten hours to get to the jail where EL was incarcerated. He explained his determination, saying “I was so fired up! I’d just come from SALC’s training … and I said, ‘I want to take up this case’.”
Wesley interviewed EL and offered to take her case pro bono. Wesley contacted SALC, who offered technical support. Their first step was to get an order for anonymity to protect EL’s identity and gain greater control over media reporting. Next, they faced an ethical question. They wanted to challenge the constitutionality of the law but that would take a long time. Because EL was in prison, they decided to undertake a criminal appeal instead. They applied for EL to be let out of custody on bail pending appeal. This is usually a difficult application to win, but they were successful and EL was released from prison.
In the appeal, the court was asked to consider whether the conviction could be justified, whether the penal provision was constitutional (arguing it was overly broad and vague), and whether the sentence was manifestly unjust. Wesley used his learnings from the SALC training to raise international principles and instruments relating to sentencing, which the court referenced and upheld. Michaela Clayton, then Executive Director of the AIDS and Rights Alliance for southern Africa (ARASA), and now a member of HJN’s Supervisory Board, provided expert testimony. Another expert witness, Dr Ruth Brand, identified through HJN’s global network, gave expert scientific evidence to show the risk of HIV transmission had been “infinitesimally small.”
The case was heard by Honourable Justice Zione Ntaba, who held that the proceedings in the trial court were irregular and “blatantly bias” against EL, compromising her right to a fair trial. Justice Ntaba found the charge sheet had been defective and therefore EL’s plea should not have been recorded as guilty. She noted the law must be sensitive to the accused’s knowledge or belief (or lack of) that HIV would be transmitted. Justice Ntaba decided the conviction could not be justified, acknowledging human rights principles against the overly broad criminalisation of HIV non-disclosure, exposure, or transmission. EL’s sentence was set aside. (The Constitutional challenge was referred to a full-member panel of the Constitutional Court although the case was not pursued.)
Notably, Justice Ntaba was a member of the African Regional Judges Forum to discuss HIV, TB and Human Rights (a process which is owned and planned by the judges and run with support from UNDP and funding from the Global Fund).
Fighting the stigma
Shortly after EL’s arrest, the Coalition of Women and Girls Living with HIV and AIDS in Malawi (COWLHA) and the Malawi branch of the International Community of Women Living with HIV/AIDS (ICW-Malawi) discussed the case at a roundtable meeting. At first, everyone was surprised and even laughed, questioning how she could have breastfed someone else’s child. They had never heard of a criminal case involving infant feeding and did not understand what they were dealing with.
During their discussions, COWLHA and ICW-Malawi agreed that the prosecution of EL was a manifestation of stigma and misinformation about HIV in the community. They learned more about the unjust measures that EL had experienced, like being imprisoned without being given a chance to be heard and not being given the chance to prepare and take her medication and things she needed to care for her child. COWLHA and ICW decided to get involved.
Concerned that EL could face social and community hostility after her release, COWHLA and ICW planned a visit to the village to provide psychosocial support to EL and to work with traditional community leaders to provide community sensitisation on HIV, addressing issues of stigma and discrimination. Their efforts helped change some community members’ ideas about HIV.
The community formed two support groups— one for youth and another for adults (notably both were predominantly female groups). They have conducted numerous activities, including home visits, supporting children to go to school, helping the elderly with house chores, and they have a garden where they grow vegetables and rice. They hoped to access loans to become self-reliant. They also had a list of issues they wanted to learn more about, including preventing mother-to-child transmission, sexual and reproductive health, positive living, stigma and discrimination, and treatment literacy.
Visiting EL at home
In September 2019, a three-member team comprising Edna Tembo (Executive Director of COWLHA), Charity Mkona (ICW Board Chair), and Peter Gwazayani (media consultant), set out for EL’s village.
The team was welcomed by the Group Village Headman, who took them to EL’s house. EL recognised Edna from the work COWLHA and ICW-Malawi had done in the community previously. EL welcomed the team with a big smile.
EL and her husband looked cheerful as they laid a mat on the veranda of their house for the visitors. Her mother later joined the discussion.
EL was interested to learn that HJN wanted to write about her case and the type of interventions that had been helpful, to share the story with advocates for HIV justice around the world.
EL recounted that when she returned to the village, “most members of my community received me with happiness, particularly my relatives. The day I arrived, they were jubilant. They celebrated with songs that we normally sing during special occasions in the village.”
EL lives with her husband, five children and her mother in a compound made up of three grass thatched houses. She introduced her children:
“The oldest is 13 and she goes to school, as do the second and third. The fourth, a little girl, is the child I was with in prison. She has not yet started school. And then there is this one, who I am breastfeeding. She is the fifth one. She has been tested for HIV on two occasions and will be going for the last test soon. The other two tests have come back HIV-negative.”
EL’s accuser and her family still lives in the same village which has presented some difficulties. EL said that on several occasions she had tried to greet them when they passed each other, but she had been ignored. “They don’t talk to me but from deep down in my heart, I have no grudges against them,” EL said. “I am just living my normal life,” EL says, although now she says that she would never agree to carry anybody else’s child, for any reason.
Moving beyond criminalisation
With respect to the community-level interventions, lawyer Annabel Raw, who worked at SALC during the time they supported the EL case said:
“As lawyers, we would never have thought to consider such an intervention had ICW-Malawi and COWLHA not shared their insights and been willing to support the client and her community. Their work has been so important to ensuring that meaningful justice was done to combat the actual root cause of the prosecution — stigma and discrimination — and to reconcile EL with her community.”
Engaging with the community also influenced ICW-Malawi and COWLHA’s thinking about HIV criminalisation. COWLHA’s Edna Tembo noted that:
Supporting people who have been prosecuted, particularly women, gives them power, … However, it is very important to stress that psychological support is absolutely vital for those who have been prosecuted. That includes family support, and a supportive community environment enabling acceptance of an individual accused.”
Tembo was also quick to emphasise that there is more work to be done. That work includes awareness raising and ongoing support to the community, especially to identify and train volunteers, empowering them to provide services at community level and to link them to health facilities and district offices for continued support and mentorship.
EL described her dreams for the future:
“My wish now is to see my children progress in school so that they become productive citizens in this community and help it grow. That’s my dream. If they get educated, they will be able to stand on their own and support others. My husband is not employed and it is a challenge to get money for school fees for our children. We would love to get a loan or training to have greater knowledge of economic empowerment because we want to be self-reliant. We would then love to lease some land to grow rice to sell to pay back the loan.
“It’s also my wish to see the lives of all people in the community uplifted. We farm but on a small-scale. If we were to be supported with funds, I’d love to see the community establish big rice farms, working in groups, harvesting for consumption and for sale. In so doing, we would be able to uplift our lives for the better.”
Learn more about Wesley’s experiences in EL’s case here and here.
Learn more about the African Regional Judges Forum here.
The full High Court judgement is available here, with a summary included here.
Read more about the successful HIV and AIDS Management Act community advocacy here.
This article is based on information provided by ICW-Malawi and COWLHA following their visits to EL’s village, and an interview with Wesley Mwafulirwa published by UNDP. HJN provided financial and logistical support for the village visits thanks to a grant provided to the HIV Justice Global Consortium from the Robert Carr Fund for civil society networks.
Colombia: Constitutional court condemns restaurant for not hiring a young man with HIV
The Constitutional Court condemned a well-known restaurant chain in the country for having discriminated against a citizen who applied for a job within said chain. It stopped the hiring process when it found out that the man was HIV positive. Due to this situation, the Court urged the Ministry of Labor to promptly address complaints in job selection processes for discrimination and establish guidelines for employers.According to the Constitutional Court In Judgment T-031/21, the young man whose identity was protected as a protection measure, filed a reference guardianship on October 22, 2019 by the First Civil Municipal Court of Cali, considering that he was a victim of discrimination by of ‘Mr. Wok ‘, because of being HIV positive, diagnosed since 2016 as an asymptomatic carrier.
According to the young man, the company did not take into account his cognitive ability, academic training and work experience, only his pathology. The Court ruled in favour of the young man and pointed out that they found irregularities in the actions of the IPS and the company.
The Court ruled in favour of the young man and noted that it found irregularities in the actions of the IPS and the company. Regarding the former, it noted that “it evaded the constitutional and legal guidelines that govern it and failed to comply with the duties that frame the ethical conduct of its activity by revealing confidential information related to the applicant’s serological status”.
On the other hand, the restaurant ignored the limits that demarcate the principles of the autonomy of private will and freedom of enterprise, in accordance with the general rules governing due process in relations between private individuals, in the context of a labour selection process”.
The case will now be brought to the attention of the National Superintendence of Health so that it can establish the respective sanction.
Corte condena a restaurante por no contratar a un joven portador de VIH
La Corte Constitucional condenó a una reconocida cadena de restaurantes del país por haber discriminado a un ciudadano que aplicó a un puesto de trabajo dentro de dicha cadena, la cual detuvo el proceso de contratación al conocer que el hombre era VIH positivo.
Por esta situación la Corte exhortó al Ministerio del Trabajo para que atienda oportunamente las quejas en procesos de selección laboral por discriminación y establezca lineamientos para los empleadores.
Según lo relató la Corte Constitucional en la Sentencia T-031/21, el joven al que protegieron su identidad como medida de protección, interpuso una tutela de referencia el 22 de octubre de 2019 por el Juzgado Primero Civil Municipal de Cali, al considerar que fue víctima de discriminación por parte de ‘Sr. Wok’, a causa de ser VIH positivo, diagnosticado desde 2016 como portador asintomático.
Según el joven, la empresa, no tuvo en cuenta su capacidad cognitiva, formación académica y experiencia laboral, únicamente su patología.
La Corte falló a favor del joven y señaló que encontró irregularidades en el accionar de la IPS y de la empresa. Sobre la primera señaló que “evadió los lineamientos constitucionales y legales que la rigen e incumplió los deberes que enmarcan la conducta ética de su actividad al revelar información confidencial relacionada con el estado serológico del accionante”.
Por otro lado, el restaurante desconoció los límites que demarcan los principios de la autonomía de la voluntad privada y la libertad de empresa, de conformidad con las reglas generales que rigen el debido proceso en las relaciones entre particulares, en el contexto de un proceso de selección laboral”.
El caso, ahora será puesto en conocimiento de la Superintendencia Nacional de Salud para que esta establezca la sanción respectiva.
Argentina: Organisations call for Congress to start discussing new HIV, STIs and Hepatits bill
They demand that the HIV and STI bill be dealt with
Translated via Deepl.com. For original article in Spanish, please scroll down.
The new proposal was presented on October 26, 2020. It is the third time it reaches Congress, and different organizations demand that it be debated.
The current HIV regulation (regulation 23.798) dates back to 1990. With the change of contexts and perspectives, it is understandable that it is now outdated and insufficient to guarantee rights.
To reverse this situation, the new bill on HIV, Hepatitis, Tuberculosis and STIs is waiting to be discussed in Congress. As already mentioned, the 24-page document was presented at the end of October and is the result of a network of 40 organizations.
With respect to the current regulation, it establishes a change of perspective: the 1990 regulation has a biomedical approach, while the current draft establishes a gender and human rights approach. It seeks to focus on the social determinants of health and the elimination of stigma.
“It is urgent the treatment because we have a law in force from 1990 that may not be a long time for other laws but for an issue such as HIV or other viral pathologies, taking into account the progress in recent years of science and social behavior in relation to these pathologies, it is necessary to update this purely biomedical character and move to a regulation that is a comprehensive response, with a Human Rights approach,” said Matías Muñoz, president of the Ciclo Positivo Association.
In relation to the previous point, the interviewee commented that although HIV is a virus that runs through people’s blood, it not only has consequences on physical health, but there is a social problem around HIV that is related to stigma and discrimination.
“Currently, a person with HIV has the possibility of accessing treatment free of charge, but there are other social barriers that prevent them from having a good quality of life, such as discrimination in access to employment, job discrimination, dismissal for having HIV, problems in the educational system or with the close environment,” said Muñoz.
Is this the first time that a proposal with these characteristics has been presented? No, the National Front for People’s Health had already worked together with organizations on this project, which entered Congress in 2018, but was shelved.
Following the previous paragraph, on December 1, 2019 it lost parliamentary status. But it was not the first time it happened, in 2016 the same thing happened, despite having favorable opinion of the Social Action and Public Health Committee of the Chamber of Deputies.
It is important to highlight the support that the proposal has from different political parties. We highlight that it bears the signature of 17 deputies of the Frente de Todos, UCR, Coalición Cívica, Pro, Frente de Izquierda y los Trabajadores and Partido Socialista.
Key points of the new bill
In its article 1, it declares of public and national interest -among other things- the medicines, vaccines, procedures and medical products for the prevention, diagnosis, treatment and cure of HIV, Viral Hepatitis, Tuberculosis and STIs.
In another of its points, it establishes the integral and intersectoral response, which guarantees, for example, education and sensitization of the population, access to truthful, sufficient and updated information, and the reduction of risks and damages of stigma, discrimination and criminalization towards people with HIV, Viral Hepatitis, Tuberculosis and STIs.
It also includes palliative care and rehabilitation of these pathologies, including associated, derived and concomitant pathologies, as well as the adverse effects derived from them and/or their treatments.
This project contemplates universal and free coverage. The agents of the public health service, social security and prepaid medicine entities are obliged to provide comprehensive assistance to people affected by HIV, Viral Hepatitis, Tuberculosis and STIs.
In a clear way, the Ciclo Positivo Association highlights, among other points, the following:
– Prohibition of HIV, Hepatitis, TB and STI tests to enter a job position, in pre-employment medical examinations.
– Non-contributory pensions for people with HIV and Hepatitis B or C who have unmet needs. Provision of treatment for those who acquired the virus through vertical transmission and for other key populations such as women, transgender people, transvestites and non-binary people, etc.
– Creation of a National Commission on HIV, Hepatitis, TB and STIs integrated by different ministries, scientific societies and civil society organizations working on the issue.
– Extension of the provision of formula milk up to 18 months (previously only up to 6 months) for babies born to positive mothers.
– Creation of the National Observatory of Stigma and Discrimination within the orbit of INADI, in order to prevent the use of HIV infection, Hepatitis B or C, TB or any STI to prevent the exercise of rights.
There are expectations around this third presentation, due to the wide support of the project and the diffusion generated in the social networks in the last weeks, in order to promote its treatment in the Congress.
On this point, the president of Ciclo Positivo, said that “with the stir that has been achieved in the social networks in the last few days, the deputy Pablo Yedlin, president of the Health and Social Action Commission, told us that he is pleased with the possibility of having an opinion in the next few weeks”.
Although such a step would be taken after the primary elections, the claim must be kept in force. “We understand that we have a project supported by all the blocks, and for that reason, we consider that we can achieve the approval this year”, Muñoz concluded.
Exigen que se trate el proyecto de Ley de VIH e ITS
La nueva propuesta fue presentada el 26 de octubre del 2020. Es la tercera vez que llega al Congreso, y diferentes organizaciones reclaman que sea debatida.
La reglamentación vigente (normativa 23.798) de VIH data del año 1990. Con el cambio de contextos y perspectivas, es entedible que ahora esté desactualizada y que sea insuficiente para garantizar derechos.
Para revertir esta situación, el nuevo proyecto de Ley de VIH, Hepatitis, Tuberculosis e ITS espera ser tratado el Congreso. Como ya mencionamos, el documento de 24 páginas se presentó a fines de octubre, y es resultado de una red de trabajo con 40 organizaciones.
Respecto a la normativa vigente, establece un cambio de perspectiva, la de 1990 tiene un enfoque biomédico, en cambio, el proyecto actual fija un enfoque de género y de derechos humanos. Busca poner foco en los determinantes sociales de la salud y la eliminación del estigma.
“Es urgente el tratamiento porque contamos con una ley vigente del año 1990 que puede que para otras leyes no sea mucho tiempo pero para una cuestión como el VIH u otras patologías virales, teniendo en cuenta el avance de estos últimos años de la ciencia y el comportamiento social en relación a estas patologías, es necesario actualizar este carácter puramente biomédico y pasar a una normativa que sea de respuesta integral, con un enfoque de Derechos Humanos”, dijo Matías Muñoz, presidente de la Asociación Ciclo Positivo.
En relación al punto anterior, el entrevistado comentó que si bien, el VIH es un virus que recorre la sangre de las personas, no solamente tiene consecuencias en la salud física, sino que existe una problemática social alrededor del VIH que está relacionada con el estigma y la discriminación.
“Actualmente, una persona con VIH tiene la posibilidad de acceder a su tratamiento de manera gratuita, sin embargo hay otras barreras sociales que impiden que tenga una buena calidad de vida, como puede ser la discriminación en el acceso al empleo, la discriminación laboral, despidos por tener VIH, problemas en el sistema educativa o con el entorno cercano”, comentó Muñoz.
¿Es la primera vez que se presenta una propuesta con estas características? No, el Frente Nacional por la Salud de las Personas ya había trabajado en conjunto con las organizaciones sobre este proyecto, que ingresó al Congreso en 2018, pero fue cajoneado.
Siguiendo el párrafo anterior, el 1 de diciembre de 2019 perdió estado parlamentario. Pero no fue la primera vez que pasó, en 2016 sucedió lo mismo, a pesar de tener dictamen favorable de la Comisión de Acción Social y Salud pública de la Cámara de Diputados.
Es importante destacar el apoyo que tiene la propuesta de diferentes partidos políticos. Resaltamos que lleva la firma de 17 diputados y diputadas del Frente de Todos, UCR, Coalición Cívica, Pro, Frente de Izquierda y los Trabajadores y Partido Socialista.
Puntos claves del nuevo proyecto
En su artículo 1º, declara de interés público y nacional- entre otras cosas- los medicamentos, vacunas, procedimientos y productos médicos para la prevención, diagnóstico, tratamiento y cura del VIH, las Hepatitis Virales, la Tuberculosis y las ITS.
En otro de sus puntos, se establece la respuesta integral e intersectorial, que garantiza, por ejemplo, la educación y sensibilización de la población, un acceso a la información veraz, suficiente y actualizada, y la reducción de riesgos y daños del estigma, la discriminación y la criminalización hacia las personas con VIH, Hepatitis Virales, Tuberculosis e ITS.
Además se comprenden los cuidados paliativos y la rehabilitación de estas patologías, incluyendo las asociadas, derivadas y concomitantes, así como los efectos adversos derivados de las mismas y/o de sus tratamientos.
Este proyecto contempla la cobertura universal y gratuita. Los agentes del servicio público de salud, las obras sociales y las entidades de medicina prepaga, están obligadas a brindar asistencia integral a las personas afectadas por el VIH, las Hepatitis Virales, la Tuberculosis y las ITS.
De manera clara, la Asociación Ciclo Positivo, destaca, entre otros puntos, a los siguientes:
– Prohibición del test de VIH, Hepatitis, TBC e ITS para ingresar a un puesto de trabajo, en los exámenes médicos preocupacionales.
– Pensiones no contributivas para aquellas personas con VIH y Hepatitis B o C que tengan necesidades insatisfechas. Provisión de tratamientos para quienes adquirieron el virus por transmisión vertical y para otras poblaciones clave como mujeres, personas trans, travestis y no binaries, etc.
– Creación de una Comisión Nacional de VIH, Hepatitis, TBC e ITS integrada por distintos ministerios, sociedades científicas y organizaciones de la sociedad civil que trabajen el tema.
– Extensión de la provisión de leche de fórmula hasta los 18 meses (antes llegaba sólo a los 6 meses) para bebés de madres positivas.
– Creación del Observatorio Nacional de Estigma y discriminación en la órbita del INADI, en la búsqueda de que no se pueda utilizar la infección por VIH, Hepatitits B o C, TBC o cualquier ITS para impedir el ejercicio de los derechos.
Hay expectativas en torno a esta tercera presentación, por el amplio apoyo que tiene el proyecto y por la difusión que se generó en las redes sociales en las últimas semanas, para impulsar su tratamiento en el Congrego.
Sobre este punto, el presidente de Ciclo Positivo, dijo que “con el revuelvo que se ha logrado en las redes sociales en los últimos días, el diputado Pablo Yedlin, presidente de la Comisión de Salud y Acción Social, nos dijo que ve con beneplácito la posibilidad de tener dictamen en las próximas semanas”.
Si bien, dicho paso se daría después de las elecciones primarias, hay que mantener el reclamo vigente. “Entendemos que tenemos un proyecto apoyado por todos los bloques, y por eso, consideramos que podemos lograr la media sanción este año”, concluyó Muñoz.
Colombia: Constitutional Court rules in favour of soldier living with HIV, reaffirming his constitutional rights
The battle an active soldier diagnosed with HIV won against the Army in Colombia
Translation via Deepl.com. For original article in Spanish, please scroll down.
To protect his fundamental rights to social security, the Sixth Chamber of the Constitutional Court ruled in favor of an active soldier diagnosed with HIV.
In 2015, an active soldier was evaluated by the Military Health Directorate of the National Army through a Medical Labor Board, there, he was evaluated for “the possible decrease of psychophysical aptitudes” after an HIV diagnosis, but he was not guaranteed treatment or follow-up by the institution.
That is to say, the soldier has had to comply with his treatment and all that it entails, in a private manner.
The 2015 report “was incomplete”, since it did not assign a percentage of loss of working capacity.
Nor did it establish criteria to determine the progress of his infection or the subsequent deterioration of his clinical conditions, the Constitutional Court explained.
In the tutela filed by the uniformed officer, three years later the Directorate denied him the possibility of repeating that evaluation “to determine the levels of his work reduction due to suffering from other illnesses that were aggravated as a result of HIV.”
Decision of the Court
Following the decision, the Sixth Chamber of Review, with Judge Gloria Stella Ortiz Delgado presiding, reaffirmed that persons with HIV are entitled to special constitutional protection.
In the specific case, the Constitutional Court argued: “The assessment carried out by the DISAN EJC in 2015 was incomplete, lacked motivation and did not analyze the medical history of the plaintiff in a comprehensive manner”.
Therefore, the Constitutional Court ordered the formation of a new Labor Medical Board.
It also recalled the obligation to respond in a timely manner to the requests made in this type of proceedings, especially in the case of members of the Army. Finally, the DISAN EJC was warned about the duty to provide the medicines required for the treatment of HIV.
Thus, the Chamber protected the rights to social security and administrative due process of the professional soldier on active duty.
He had been denied the procedures to monitor his disease and provide him with the necessary treatment.
This decision of the Court sets a precedent for members not only of the Army, but of the public force in the country.
Para proteger sus derechos fundamentales a la seguridad social, la Sala Sexta de la Corte Constitucional falló a favor de un soldado activo, diagnosticado con VIH.
En el 2015 un soldado activo fue evaluado por la Dirección de Sanidad Militar del Ejército Nacional a través de una Junta Médico Laboral, allí, se le evaluó por “la posible disminución de las aptitudes psicofísicas” tras un diagnóstico de VIH, pero no se le garantizó tratamiento ni seguimiento en la institución.
Es decir, el militar ha tenido que cumplir su tratamiento y todo lo que conlleva, de manera particular.
El dictamen del 2015 “resultó incompleto”, ya que no asignó un porcentaje de pérdida de capacidad laboral.
Tampoco estableció criterios para determinar el progreso de su infección o el posterior deterioro de sus condiciones clínicas, explicó la Corte Constitucional.
En la tutela que interpuso el uniformado, tres años después la Dirección le negó la posibilidad de repetir esa evaluación “para determinar los niveles de su disminución laboral por padecer otras enfermedades que se agravaron por consecuencia del VIH”.
Decisión de la Corte
Tras la decisión, la Sala Sexta de Revisión, con ponencia de la magistrada Gloria Stella Ortiz Delgado, reafirmó que las personas con VIH son titulares de una especial protección constitucional.
En el caso concreto, la Corte Constitucional argumentó: “La valoración efectuada por la DISAN EJC en 2015 resultó incompleta, incurrió en falta de motivación y no analizó la historia clínica del accionante de forma integral”.
Por lo tanto, la Corte Constitucional ordenó conformar una nueva Junta Médico Laboral.
También, se recordó la obligación de responder oportunamente las solicitudes elevadas en este tipo de trámites, especialmente cuando se trate de miembros del Ejército.
Finalmente, se advirtió a la DISAN EJC sobre el deber de suministrar los medicamentos que se requieran para el tratamiento del VIH.
Así la Sala protegió los derechos a la seguridad social y al debido proceso administrativo del soldado profesional en servicio activo.
Se le habían negado los procedimientos para hacerle seguimiento a su enfermedad y brindarle el tratamiento necesario.
Esta decisión de la Corte sienta un precedente para miembros no solo del Ejército, sino de la fuerza pública en el país.
Argentina: New HIV, STI and Hepatitis law under evaluation by Public Health Commission
There will be a new law on sexual diseases, HIV and viral hepatitis
Translation via Deepl.com. For original article in Spanish, please scroll down.
A new law is being evaluated to update the existing legislation to the scientific advances registered for sexually transmitted diseases, HIV and viral hepatitis.
For this purpose, the Senate Public Health Commission met with professionals from the HIV and STI Program of the Ministry of Public Health. A bill on Integral Assistance and Research on Acquired Immunodeficiency Syndrome, Sexually Transmitted Infections and Viral Hepatitis was analyzed.
In this regard, the legislative initiative seeks to update the regulatory framework on the matter, taking into account that both the current provincial Law No. 6660 and the national Law No. 23.798 date back to 1992 and 1990 respectively, and that the treatments and scientific advances in the field of AIDS and other Sexually Transmitted Infections have been greatly updated.
The bill declares of provincial interest the prevention, diagnosis, treatment, integral assistance, rehabilitation and research on Acquired Immune Deficiency Syndrome (HIV/AIDS), Sexually Transmitted Infections (STI) and Viral Hepatitis, including their derived pathologies, as well as the measures to avoid their propagation.
It also declares the prevention and early detection of HIV/AIDS, STIs and Viral Hepatitis in pregnant women to be of provincial interest and establishes the prevention of perinatal or vertical transmission as a priority.
The initiative promotes the quality of life, the inclusion, permanence and articulation of networks of people living with or affected by HIV/AIDS, STIs and Viral Hepatitis as a mechanism to eliminate discriminatory and exclusionary practices and provides for the repeal of Law 6.660.
The meeting recognized an increase in the rate of infection in the trans and homosexual population, but also in other heterosexual groups of different age groups and referred to the need to increase testing -which is done without the need for a doctor’s order-, to disseminate the use of condoms and to advance in actions against discrimination.
Dr. Laura Caporaletti and Dr. Marcela Monterichel, director and supervisor of the HIV, STI and Viral Hepatitis Program of the Ministry of Health, considered that it is necessary to provide the province with pioneering legislation that takes into account the medical advances that, for example, now consider HIV as a chronic disease.
They reported that the number of HIV cases in Salta is still striking despite a drop in 2020 due to the restrictions imposed by the pandemic, as well as the number of cases of congenital syphilis, emphasizing the control of pregnant women to avoid vertical transmission of infections during pregnancy, childbirth or breastfeeding. They suggested extending the delivery of milk until the baby is 18 months old and the management of a building for the use of patients from the interior of the country under treatment, under one of the NGOs.
Habrá nueva ley de enfermedades sexuales, VIH y hepatitis virales
Una nueva ley se evalúa para actualizar la legislación existente a los avances científicos registrados por enfermedades de transmisión sexual, VIH y hepatitis virales.
A esos efectos la Comisión de Salud Pública del Senado se reunió con profesionales del Programa de VIH e ITS del Ministerio de Salud Pública. Se analizó un proyecto de Ley de Asistencia Integral e Investigación sobre el Síndrome de Inmunodeficiencia Adquirida, las Infecciones de Transmisión Sexual y las Hepatitis Virales.
Al respecto la iniciativa legislativa busca actualizar el plexo normativo en la materia, teniendo en cuenta que tanto la actual Ley provincial N° 6660, como la Ley nacional N° 23.798, datan del año 1992 y 1990 respectivamente, habiéndose actualizado enormemente los tratamientos y avances científicos tanto en materia de SIDA como de otras infecciones de Transmisión Sexual.
El proyecto de Ley declara de interés provincial la prevención, diagnóstico, tratamiento, asistencia integral, rehabilitación e investigación sobre el Síndrome de Inmunodeficiencia Adquirida (VIH/SIDA), las Infecciones de Transmisión Sexual (ITS) y las Hepatitis Virales, incluyendo la de sus patologías derivadas, como así también, las medidas tendientes a evitar su propagación.
Asimismo, declara de interés provincial la prevención y detección temprana de VIH/SIDA, ITS y Hepatitis Virales en la mujer embarazada y establece el carácter prioritario de la prevención de la transmisión perinatal o vertical.
La iniciativa promueve la calidad de vida, la inclusión, permanencia y articulación de redes de personas que vivan o estén afectadas por VIH/SIDA, ITS y Hepatitis Virales como un mecanismo para eliminar las prácticas discriminatorias y de exclusión y dispone la derogación de la Ley 6.660.
Tasa de contagios
En el encuentro se reconoció un aumento en la tasa de contagio en la población trans y homosexual, pero también en otros grupos heterosexuales de distintas franjas etarias y se refirieron a la necesidad de incrementar testeos -que se hacen sin necesidad de pedido médico-, difundir el uso del preservativo y avanzar en acciones contra la discriminación.
Casos de SIDA
Las doctoras Laura Caporaletti y Marcela Monterichel, directora y supervisora del Programa de VIH, ITS y Hepatitis Virales del ministerio de Salud, consideraron que resulta necesario dotar a la provincia de una legislación pionera que contemple los avances médicos que por ejemplo hoy consideran al HIV como una enfermedad crónica.
Relataron que en Salta sigue siendo llamativo el número de casos de VIH pese a una baja en 2020 adjudicada a las restricciones que impuso la pandemia, del mismo modo que los casos de sífilis congénita, poniendo énfasis en el control de embarazadas para evitar la transmisión vertical de las infecciones tanto en la gestación, como en el parto o el período de lactancia. Sugirieron ampliar la entrega de leche hasta los 18 meses de vida del bebé y la gestión de un inmueble para uso de pacientes del interior en tratamiento, bajo alguna de las ONG.
It’s Valentine’s Month! February is historically the month of love, and a time to show and share the love.
The HIV Justice Network is pleased to support campaigns in the month of love – February – focusing on HIV-positive living, loving, and justice.
Given the difficulty that some people living with HIV can face when it comes to finding love, including negotiating disclosure, sex for pleasure, and/or creating a family in the context of HIV criminalisation, it is important to acknowledge that everyone is deserving of love and affirmation.
To this end, the HIV Justice Network wishes to acknowledge the following Valentine’s campaigns for and about people living with HIV.
The #LovePositiveWomen campaign is a global initiative running every Feb 1st-14th for each of us to express, share and support women living with HIV or as a friend of the community. It was developed and led by the International Community of Women Living with HIV (ICW), one of seven founding partners of HIV JUSTICE WORLDWIDE.
The campaign uses social media to link local grassroots gestures of love to each other. Using Valentines Day as a backdrop, #LovePositiveWomen “creates a platform for individuals and communities to engage in public and private acts of love and caring for women living with HIV.”
Going beyond romantic love to deep community love and social justice, the campaign is also a call to action. The HIV Justice Network has been supporting this campaign since 2017.
“#LovePositiveWomen is a response to the lack of attention and support and to make commitments. It requires participants to spend time reflecting on how they as either a woman living with HIV or an ally will commit to loving women living with HIV. Through action, change can be made to fueling economies of love and compassion. Working from a place of strength, it focuses on the idea of interconnectedness, relationship building, loving oneself, and loving one’s community. By starting from a place of love, within oneself, there are endless ways that the negative impacts that HIV has on women living with HIV can be lessened.”
For this year, their focus will feature some key messages around love, advocacy, human rights, justice, and accountability.
“Accountability International is well known for our fun and innovative Valentine’s Day campaigns and our collaborative, diverse, and inclusive way of working, so this year we have decided to put our Valentine’s campaign on steroids.”
Watch out for HJN’s Executive Director to be a part of the campaign, which uses the hashtags #LoveandAccountability and #LoveandHumanRights.
The HJN Team
Watch all the videos of Beyond Blame @HIV2020 – our “perfectly executed…deftly curated, deeply informative” webshow
“We have been being battling this fight for many years. Since the start of the HIV epidemic we as gay men, as gay women, as queers, as transgender people, as sex workers, as people using drugs, have been persecuted by the criminal law. And I’m here to say, “Enough! Enough!
We have achieved a great deal with our movement, with the HIV Justice Network. We have achieved a great deal in conscientizing law makers, law givers and the public. It is now time for us to join in unison to demand the end of these stigmatising, retrograde, unproductive, hurtful, harmful laws.
It is a long struggle we’ve engaged in. And it’s one that has hurt many of us. Some of us here today, some of us listening in, some of us who have spoken, have felt the most brutal brush of the law. They have been imprisoned, unjustly prosecuted, unjustly convicted, and unjustly sent away.
HIV is not a crime. But there is more to it. Criminalising HIV, criminalising the transmission or exposure of HIV, as many countries on my own beautiful continent Africa do, is not just stupid and retrograde. It impedes the most important message of the HIV epidemic now, which is that this epidemic is manageable. I’ve been on antiretroviral treatment now for very nearly 23 years. My viral load has been undetectable for more than 20.
We can beat this, but we have to approach this issue as public health issue. We have to approach it rationally and sensibly, and without stigma, and without targeting people, and without seeking to hurt and marginalise people.We’ve made calamitous mistakes with the misapplication of the criminal law over the last hundred years, in the so-called ‘war on drugs’. We continue to make a calamitous mistake in Africa and elsewhere by misusing the criminal law against queer people like myself. We make a huge mistake by misusing the criminal law against people with HIV.
Let us rise today and say, “Enough!”
US: Activists activists raise concerns over the links between public health & law enforcement surveillance
Questioning the Benefits of Molecular Surveillance
Can this HIV prevention strategy overcome mistrust and fear among marginalized communities?
In Texas, health officials recently used a new surveillance technology to identify a large HIV outbreak among gay and bisexual Latino men. In Massachusetts, officials used the same strategy to respond to an outbreak among injection drug users. And in California, researchers used the method to identify a transmission cluster among transgender women.
Led by initial proof-of-principle research at the Centers for Disease Control and Prevention (CDC), an HIV prevention strategy known as molecular surveillance is quickly expanding across the country. Since December 2015, according to an email from a CDC source who commented on background, the technique, based on sequencing and comparing individuals’ viral genetic blueprints, has identified more than 240 recent and rapidly growing HIV transmission clusters, the vast majority of which had not previously been recognized. Comparing these sequences allows researchers to determine whether individuals’ HIV is closely related, which offers clues about who transmitted the virus to whom.
Traditional public health methods—now being used to trace the spread of COVID-19, the disease caused by the new SARS-CoV-2 coronavirus—largely rely on asking people about their contacts and getting in touch with them by phone or in person. The CDC source said molecular data analysis allows for more rapid and comprehensive cluster and outbreak detection and response. As such, molecular surveillance is seen by the agency as a key part of effective HIV prevention and a means to help hard-hit communities and the nation end the HIV epidemic.
Those idealized goals, however, are clashing with a far messier reality in which decades of mistrust and fear among marginalized communities, heightened in the current political climate, are coming to a head. The tech-aided HIV surveillance strategy, six activists told POZ, could open up new avenues for private data to be breached, exploited, subpoenaed or otherwise released through many of the HIV criminalization laws and statutes still on the books in 34 states.
Activists say the CDC-led molecular surveillance effort was launched with little or no consultation or buy-in from the communities most likely to be impacted. Several meetings ensued, including one convened in 2018 by the O’Neill Institute for National & Global Health Law at Georgetown Law School in Washington, DC, that allowed critics to air some of their concerns. Despite a subsequent round of CDC guidelines on how best to safeguard patient data, however, the controversy has only grown over the potential misuse and unintended consequences of the surveillance scheme.
Patients can’t opt out of providing their viral sequence data for the molecular tracking, critics point out. Nor does the strategy adequately consider the state-by-state patchwork of protections and penalties or the growing health implications of an erosion of immigrant, minority and LGBTQ rights, they say.
Sean Strub, POZ’s founder and the executive director of the nonprofit Sero Project, which focuses on reforming HIV criminalization laws, says he fears the CDC-led strategy will diminish trust and cooperation with public health agencies and drive more vulnerable people further from the health care system out of fear of surveillance. “I think the risk of unintended consequences is very great,” he says.
Strub and other activists see molecular surveillance as part of a broader trend in the “securitization of disease,” which is increasingly blurring the lines between the public health and criminal justice systems.
“We are potentially threatening people’s freedom just to get cleaner data, and I think it’s a clear ethical concern,” says Devin Hursey, a member of the Missouri HIV Justice Coalition and a board member of Blaq Out, a nonprofit advocacy group for Black queer and transgender people in the Kansas City region. “We can’t just look the other way or say we’re doing our best effort when we’re not really addressing that HIV criminalization still exists.”
The CDC source told POZ that the agency understands and has addressed many of the questions and concerns raised by community advocates. The CDC has strong data protections and security measures in place, the source said, and has worked for many years to provide guidance to states on reviewing and revising criminalization laws and ensuring data are well protected.
But Naina Khanna, executive director of Positive Women’s Network–USA, says the CDC hasn’t responded to specific questions about its data-sharing practices with other federal agencies, like the Department of Homeland Security and Immigration and Customs Enforcement (ICE). Khanna points out that the communities most impacted by HIV are also disproportionately affected by surveillance, policing and criminalization. “That’s extremely concerning when we think about how policing intersects with being a Black gay man or being a Latino gay man,” she says. In response, the CDC source told POZ that all HIV surveillance data are reported to the agency without names or any personal identifiers and are encrypted and protected by an Assurance of Confidentiality under Section 308(d) of the federal Public Health Service Act.
A New Surveillance Tool
When someone tests positive for HIV in the United States, a blood draw allows labs to sequence part of the viral genome, or its genetic blueprint, and use that to determine whether the virus contains mutations that might lead to drug resistance. This information can help doctors tailor the best HIV treatment regimen for each individual. But once the genetic sequencing is complete, health departments can access that data for molecular HIV surveillance. Specifically, they compare viral RNA sequences from multiple individuals to identify clusters of transmission. This is possible because HIV mutates over time; as a result, people with similar genetic sequences are more likely to have been infected around the same time as part of the same person-to-person chain of viral transmission.
Randy Mayer, MS, MPH, chief of the Bureau of HIV, STD and Hepatitis at the Iowa Department of Public Health, says the HIV resistance tests sent in by doctors around the state essentially provide his department with free surveillance data. “It’s something that we can use to try to improve our response that doesn’t really cost us anything,” Mayer says. “So from that point of view, it is cost effective.”
If a state-run computer program finds two or more individuals who share closely related viral sequences, it suggests that HIV might have passed between them or through a close intermediary. Spotting such clusters of transmission could help public health officials identify HIV-positive individuals and their close sexual or needle-sharing partners.
The surveillance approach has multiple potential benefits, researchers say. “This is just one more strategy in the toolbox of surveillance tools used to guide public practice,” says Nanette Benbow, MAS, research assistant professor of psychiatry and behavioral sciences at Northwestern University Feinberg School of Medicine in Chicago. HIV transmission clusters identified through this method, she says, may represent only the “tip of the iceberg” of at-risk individuals, since the genetic information is available only for HIV-positive people who’ve been to a doctor and received drug resistance testing. Through contact tracing, though, public health officials can find other people associated with the cluster, contact them and offer them a range of care or prevention services, like pre-exposure prophylaxis (PrEP), if they’re not already receiving them.
Benbow says evidence suggests that the rate of HIV transmission within such clusters is much higher than that of transmissions overall, bolstering the case that public health agencies should focus on these clusters as significant sources of active viral transmission.
Some public health experts say the growth of surveillance is inevitable. “You’re not going to stop technology. All you can do is try to get it implemented in an ethical manner,” says Eve Mokotoff, MPH, managing director of HIV Counts, a consulting business based in Ann Arbor, Michigan, that assists with HIV surveillance.
Andrew Spieldenner, PhD, vice chair of the U.S. People Living with HIV Caucus and an assistant professor of communications at California State University San Marcos, rejects that argument. “Just because technology exists doesn’t mean we have to use it,” Spieldenner says. “We have to balance it with the harms it does to individuals.”
Newer technology that could extend molecular HIV surveillance is giving activists more pause. One method, called ultra-deep whole-genome next-generation sequencing, isn’t yet part of the CDC strategy. But emerging study data suggest that it could predict the directionality of linked HIV transmissions, potentially adding new evidence to suggest who infected whom. Researchers at Johns Hopkins University School of Medicine, in fact, recently described how they correctly predicted HIV transmission from an index case to a sexual partner in more than 90% of 105 sample pairs. The direction couldn’t be established in the remaining cases, but the method didn’t incorrectly predict any transmissions.
Other research the CDC is pursuing may help estimate the recency of an infection, meaning whether one person acquired HIV more recently than another. Together, the data could enable additional predictions about when and how HIV infections occurred within transmission clusters. Benbow says the data on their own don’t prove direct transmission, since another individual could have been an intermediary in the chain, but Khanna points out that judges and juries wouldn’t necessarily take these scientific caveats into account. “We see a lot of potential for opening the door to criminalization,” she says.
Despite privacy assurances, Strub maintains that data collected for one purpose is being unethically used for another without patient consent. “It’s not being used evenly across the society. Molecular surveillance focuses on the communities that are already highly marginalized, communities where there is the greatest risk of serious, harmful consequences,” he says. “People of privilege don’t see this.”
In a 2019 letter in the journal Lancet, researchers at the University of California, San Diego responded to criticism of their molecular surveillance study of an HIV transmission cluster involving transgender women by questioning whether informed consent is “imperative” for such analyses. “Surveillance for numerous infectious agents, including HIV, is done ethically and without consent. The public good of HIV surveillance justifies this approach,” they wrote. “Requiring consent for surveillance reporting would preclude a robust understanding of disease distribution and spread and the ensuing benefit to the health of individuals and communities.”
Alexander McClelland, PhD, a postdoctoral researcher in the Department of Criminology at the University of Ottawa, says such arguments reflect the logic that people living with HIV are an “object of risk” to be managed by public health. “We’re not considered to be people who have autonomy or rights to privacy or security of our own lives and our own bodies and our own data,” he says.
Many defenses of molecular surveillance, McClelland adds, also overlook other implications beyond the “broader public good” of repurposing patient data for public health surveillance. Among them, he says, are the criminalization, uncertainty and fear of people who are living with HIV and subject to continual privacy breaches. “People love to say, ‘We’re looking at molecules not people.’ But those molecules are connected to people, and those people are in the social world,” McClelland says, “and you can’t evacuate a virus from the social context that it’s in.”
A Climate of Fear
According to the Center for HIV Law & Policy in New York City, 34 states have enacted some form of HIV criminalization law or sentencing enhancement for other crimes allegedly committed by a person living with HIV. Although the language varies, 21 states have laws under which HIV-positive people who are aware of their status but don’t disclose it to sexual partners can be prosecuted (additional states have prosecuted nondisclosure under different laws); 12 states require the same disclosure among people who share needles. Some laws cover alleged HIV exposure while others cover actual transmission. Between 2009 and 2019, 24 states also prosecuted people living with HIV under other criminal statutes.
The interpretations and enforcement of laws can vary widely as well. In an April 2020 report, the Williams Institute at the UCLA School of Law documented 209 arrests and 107 convictions under Missouri’s HIV criminalization laws between 1990 and 2009. The report noted that the crimes appeared to be disproportionately enforced in St. Louis and adjacent St. Louis County. Although Black men account for 5.5% of Missouri’s population and 35% of people living with HIV, the report found, they accounted for more than half of HIV crime arrests and convictions over the 20-year period.
“We’re oftentimes targeted by not just HIV laws but by a lot of other different laws. We’re more likely to experience surveillance by law enforcement,” Hursey says of Black men. Layering on the element of molecular surveillance, he adds, only compounds the fear and lack of trust in public health and discourages the honest answers and cooperation necessary for HIV peer educators like him to do their jobs effectively. That mistrust is heightened by the legal requirement that Missouri’s health department must turn over all surveillance data to prosecutors pursuing an HIV criminalization case, he says.
“We have an epidemic of criminalization of people living with HIV, and you can only be prosecuted or convicted if you know your HIV status,” Khanna says. If people already feel marginalized and stigmatized, she and Hursey say, the added threat of criminalization based on knowing their HIV status can deter them from ever seeking out testing or care—the very opposite of stated public health goals.
Marco Castro-Bojorquez, cochair of the HIV Racial Justice Now project, says molecular HIV surveillance could likewise put undocumented immigrants at risk, especially since their existence in the United States is already criminalized. “It’s problematic, and it breaks my heart because a lot of people that could be very affected are those that are so fearful of the government and don’t really know that it’s happening,” he says.
Across the border from Missouri, Mayer says public health data are “well protected” in Iowa. They weren’t always, but in 2014, Iowa reformed its HIV criminalization law. The updated statute, Mayer says, requires proof that an HIV-positive person was negligent in exposing a partner to the virus and prohibits molecular surveillance data gathered by the state health department from being used to prosecute anyone. “I had some upset prosecutors who have tried to come to me, with subpoenas, to get information, which we don’t allow,” he says. Prosecutors can gather the data from other sources, but the health department has largely cut its tether to law enforcement.
Even so, prosecutors have found other mechanisms to gather data and enforce Iowa’s HIV criminalization law. In May, a 33-year-old Black man was sentenced to 26 years for “knowingly” exposing three women and a minor to HIV and transmitting the virus to three of them.
Activists say public health agencies also cannot divorce their molecular surveillance plans, however well intentioned, from the current rollback of LGBTQ, immigrant and minority rights. Castro-Bojorquez says the Trump administration’s anti-immigrant rhetoric and policies have not only eroded the Latino community’s trust in public officials but also worsened health outcomes. “Those attacks,” he says, “and the promotion of hatred, rolling back the few rights that we had and we fought so hard for, they have an impact, and people die.”
Numerous undocumented immigrants held in crowded detention centers have contracted COVID-19, and some deported immigrants have brought the coronavirus back to Guatemala, Mexico and other countries. Fear of HIV criminalization or deportation, Castro-Bojorquez says, has led other immigrants to avoid or delay “official” activities, including HIV testing and treatment. “Late diagnosis is a major issue in our communities,” he says, adding that it’s a big contributor to higher mortality rates among Latino men.
Finding Common Ground
Amid the ongoing controversy, HIV activists and public health officials may be finding common ground on the need for more community engagement and on the importance of decoupling public health and law enforcement. In a 2019 commentary in the American Journal of Public Health, Benbow joined other AIDS researchers, bioethicists and a representative of the National Alliance of State and Territorial AIDS Directors (NASTAD) in explaining how multiple aspects of existing HIV criminalization laws could confound public health goals around molecular surveillance.
Benbow and her coauthors cautioned that using identified surveillance data against the interest of patients, especially without informing them, “could jeopardize community confidence in public health agencies.” The authors also noted the CDC’s requirement that funded health departments create plans to address gaps in data protection and consider eliminating or modifying potentially counterproductive laws. “In light of the considerations we have addressed, health department leaders should consider supporting statutes that expressly limit, or even prohibit entirely, release of surveillance data for law enforcement purposes,” they wrote.
Mokotoff cautions that a health department can’t always change its state law. “But the health department can work with the community to help them understand what needs to be done and what kind of wording might be helpful,” she says. “We have to stop allowing surveillance data to be used for prosecution of people who are sick or infected.” Protecting that data from being used in law enforcement, she adds, “would change the entire discussion” with stakeholders in the HIV-positive community.
The CDC itself has avoided criticizing specific state laws, though the agency source told POZ that the CDC has worked with partners like NASTAD to review the range of legal protections, policies and procedures that can help protect HIV data. The source noted that in 2014, the Department of Justice recommended that states either reform their laws to eliminate HIV-specific criminal penalties or modernize their laws to reflect current scientific evidence. The source also pointed out that the Department of Health and Human Services 2019 initiative, “Ending the HIV Epidemic: A Plan for America,” encourages states to take similar steps to help reduce stigma.
Benbow conceded that addressing the intense mistrust of underserved individuals who may need HIV prevention or treatment services the most, including people who inject drugs and undocumented immigrants, remains a steep challenge. But identifying clusters, she says, could help health officials make the case for targeted services that benefit underserved people, like the legalization of needle exchange programs.
“A lot of what we do in public health infringes on privacy, and what we’re trying to do is balance a person’s individual freedoms and liberties and privacy with trying to improve public health and work for the common good,” Mayer says. “You really have to think very carefully about that because if you push that too far, then you’re likely to get a lot of public health interventions rolled back, and people don’t want to work with you. They don’t trust you.” And as the history of HIV shows, regaining lost trust can take decades.
US: HIV criminalisation laws increase stigma and discrimination and impede effective treatment and prevention
These laws were meant to protect people from HIV. They’ve only increased stigma and abuse.
In March 1981, an otherwise healthy Los Angeles man contracted a rare form of pneumonia usually seen only in people with severely compromised immune systems. Doctors treated him with antibiotics, but his condition worsened, and within two months, he was dead.
The Center for Disease Control, as it was then known, identified four similar cases — generally healthy young men who suddenly became very ill with the same rare lung disease — and in June 1981 published the first official report on the condition that would become known as AIDS. By the time the report was published, another of the men had died. By the end of the year, there were 337 reported cases of the condition, and 130 people had died.
Researchers discovered HIV, the virus that causes AIDS, in 1984. But the death toll kept rising, and the panic along with it. Fear and misunderstanding of the disease were such that when one student at a New York City school was thought to have the virus, 944 of the school’s 1,100 students stayed home, according to a Time magazine report. In one 1985 poll, 50 percent of people supported a quarantine of people with AIDS. Amid this panic, the idea emerged that “there were people who were intentionally spreading HIV,” Scott Schoettes, HIV project director at the LGBTQ civil rights group Lambda Legal, told Vox.
The idea may have been fueled by longstanding social prejudices, including homophobia. As journalist Steven Thrasher writes in a Guardian column on the now-debunked myth of a gay flight attendant as HIV’s “Patient Zero,” “we like to blame individuals (especially queer folks, women, immigrants and people of color) for diseases, particularly communicable ones that involve sex. Societally, it is far easier to blame them for disease rather than to deal with the complex medical, political and epidemiological causes.”
Nonetheless, states soon began instituting criminal penalties for knowingly exposing others to the virus — Florida, Washington, and Tennessee did so in 1986, Helen McDonald writes at Autostraddle. In 1990, the federal Ryan White Act, which provided funding for HIV treatment, required states to show they could prosecute people who exposed others to HIV. The laws began to proliferate, and by 2011, 33 states had one or more laws criminalizing HIV exposure. As of last year, such laws remained on the books in 26 states, according to the CDC.
How it worked:
The first problem with the laws was a simple one, according to Schoettes and others: The crime they were intended to combat didn’t actually exist. There is no evidence that a significant number of people were ever intentionally trying to infect other people with HIV.
But because many of the laws were broadly written, they were used to prosecute people who had never intended to harm anyone else — and, in some cases, who had done no harm.
Mark Hunter, for example, told Vox that he contracted HIV at the age of 7 through treatment for his hemophilia. Hunter led a healthy and active life — he had a six-figure job in Washington, DC, he said, when, in 2006, two ex-partners filed charges against him for failing to disclose his HIV status to them. Neither woman had contracted the virus, but nonetheless, he was sentenced to 12 years in prison in Arkansas, where the charges were filed.
Hunter ended up serving three years. Today, he is out on parole and living in Louisiana, but he still has to register as a sex offender. He is an outspoken advocate against laws of the kind that sent him to prison. “When we talk about criminalization, the base issue is stigma,” he told Vox. “That stigma comes from fear.”
Hunter’s is just one of many such stories. Perhaps the best-known case is that of Nick Rhoades, who had sex with another man in 2008 without disclosing his HIV status. The other man subsequently learned that Rhoades had HIV and went to a doctor for antiretroviral medication. The law in Iowa, where the men lived, required the doctor to notify police that a sex crime had occurred, according to the National Registry of Exonerations. The men had used a condom, and Rhoades’s partner had not contracted the virus. Nonetheless, Rhoades was arrested and sentenced to 25 years in prison.
Stories like these have also made people around the country afraid to get tested because “you can’t be prosecuted under one of these laws unless you know your HIV status,” Schoettes said. Testing and treatment are key ways of reducing HIV transmission, and by making people afraid to get tested, HIV criminalization laws may actually increase the spread of the virus.
A study conducted in Toronto between 2010 and 2012 (laws criminalizing HIV exposure also exist in Canada) found that 7 percent of men who had sex with men were less likely to get an HIV test for fear of future prosecution — the study authors estimated that this fear could lead to an 18.5 percent increase in HIV transmission. And in general, HIV criminalization laws likely contribute to stigma and discrimination around HIV, which world health groups like UNAIDS have identified as some of the biggest barriers to effective treatment and prevention.
Meanwhile, “these laws were used to manipulate and coerce people to stay in abusive relationships,” Tami Haught, organizing and training coordinator for the SERO Project, a group that works to end HIV criminalization, told Vox. In Iowa, where Haught lives, it was difficult for people with HIV to definitively prove they had disclosed their status to their partners as the law required. Haught recalls a woman living with HIV whose abusive boyfriend told her, “if you call the cops or leave me I will tell them you didn’t disclose your status.” If that happened, the woman, not her abuser, could go to prison.
People with HIV were even afraid to report being raped, Haught said, for fear that they could be prosecuted for failing to disclose their status during the rape.
Those sentenced under the law, meanwhile, could face decades in prison even if they had used condoms. Once released, they were often forced to register as sex offenders. In Iowa, that meant having their HIV status disclosed publicly, sometimes with a mug shot in the newspaper, Haught said. They were subject to curfews and computer searches, had to submit to twice-yearly lie detector tests, and needed permission from authorities to leave the county, she added: “They were treated as if they were these dangerous predators rather than having a consensual sexual experience with another adult.”
In recent years, though, states have begun changing their laws. Iowa was the most high-profile example. Rhoades challenged his conviction in court in 2010, and around the same time, activists began lobbying state legislators to reform the law.
Rhoades and many others fought for years to get the Iowa law changed. Finally, in 2014, then-Gov. Terry Branstad signed a new law significantly reducing the penalties for exposing others to HIV. Under the new law, if someone intentionally infects someone else with HIV, the person can still face up to 25 years in prison. But if a person with HIV only acts with “reckless disregard” in exposing someone else to the virus — for example, by not using protection — that person can face one to five years in prison, depending on whether the other party actually contracts the virus. Meanwhile, taking “practical measures to prevent transmission” of the virus makes someone exempt from prosecution, according to the Center for HIV Law and Policy.
The law also removed the requirement that people convicted of exposing others to HIV register as sex offenders, and allowed previously convicted people to be removed from the sex offender registry. After the law was signed, two Iowans who had been forced to register as sex offenders under the old law had their ankle monitors publicly removed in celebration, Haught said. That year, Rhoades won his court case, and his conviction was set aside.
Many critics have argued the changes to Iowa’s law don’t go far enough. “HIV transmission should not be criminalized—ever,” wrote Mark Joseph Stern at Slate. “HIV criminalization laws do absolutely nothing to prevent the spread of the virus.”
But in general, Schoettes said, it’s been very difficult to convince state legislators to remove penalties completely. Also, “our concern is if you get rid of the law, prosecutors may just proceed under general criminal laws without parameters or guidance” — in some states, for example, people with HIV have been prosecuted for reckless endangerment or even assault with a deadly weapon. For that reason, Lambda Legal has backed reforming rather than removing these laws.
These efforts have had success in California, where in 2017 then-Gov. Jerry Brown signed a law ensuring that people cannot be prosecuted based on HIV status unless they actually intend to transmit the virus and do so. Colorado, Michigan, and North Carolina have also reformed their laws or regulations around HIV, Haught said. And according to Schoettes, advocates are also working to repeal or reform HIV criminalization laws in Florida, Illinois, Ohio, Indiana, and elsewhere.
Today, Mark Hunter is “in a good place,” he said. He is married, and has adopted his wife’s son from a previous relationship. He has a job with the state of Louisiana, he’s a deacon in his church, and he has started an HIV/AIDS foundation named after his brother. He will be off parole in April 2020.
But his driver’s license still has the words “sex offender” printed on it. And around the country, he still sees a lot of stigma around HIV.
“Change is coming,” he said, “but it’s coming slow.”
Anna North covers gender issues, reproductive rights, workplace discrimination, LGBTQ rights, and more for Vox. Previously, she worked for The New York Times.