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

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

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

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

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

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

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

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

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

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

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

The paper is available to download now in English at https://www.hivjusticeworldwide.org/en/mhs/ 

It will be available soon in French, Russian and Spanish. 

Watch the launch video below:

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

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

*MHS Expert Advisory Group

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

September 14 is Sex Worker Pride!

HJN stands in solidarity with sex workers and asks everyone to support the upcoming Sex Worker Pride Day (September 14) that aims to increase the visibility of sex workers and their activism.

Sex Worker Pride is an opportunity to celebrate and share stories of sex workers’ self-determination and the achievements of the sex worker rights movement, according to the Global Network of Sex Work Projects (NSWP) which began the day in 2019. NSWP upholds the voice of sex workers globally and connects regional networks advocating for the rights of female, male, and transgender sex workers.

NSWP states that Sex Worker Pride “extends to all marginalised by criminalisation, discrimination, and stigma across the sex worker movement and celebrates the diversity within our community during International Sex Worker Pride.”

Edwin J Bernard, HJN’s Executive Director says: “We stand in solidarity with all sex workers. Sex work is work. We oppose all forms of criminalisation and other legal oppression of sex work, including sex workers, clients, third parties, families, partners, and friends.”

Sex Worker Pride is one of four international sex worker rights days observed every year: 3rd March (International Sex Workers Rights Day), 2nd June (International Sex Workers Day), and 17th December (International Day to end violence against sex workers)

To show solidarity, please join the conversation and organising on social media using the hashtag #SexWorkerPride.

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.

HJN proudly joins the Support.Don’t Punish campaign

The HIV Justice Network is a proud supporter of the Support. Don’t Punish campaign now in its ninth year. Tomorrow, Saturday 26 June, is the campaign’s yearly high point, the Global Day of Action.

According to the campaign’s website, Support.Don’t Punish is a global grassroots-centred initiative in support of harm reduction and drug policies that prioritise public health and human rights. The campaign seeks to put harm reduction on the political agenda by strengthening the mobilisation capacity of communities targeted by the “war on drugs” and their allies, opening dialogue with policy makers, and raising awareness among the media and the public.

The theme for this year’s Global Day of Action is “Undoing the ‘war’, building the future that our communities have always deserved”. The date, 26th June is symbolic as it is used by most governments to commemorate the International Day Against Drug Abuse and Illicit Trafficking to highlight their so-called ‘achievements’ in “the war on drugs.”

The Support. Don’t Punish campaign aligns with the following key messages:

  • The drug control system is broken and in need of reform.
  • People who use drugs should no longer be criminalised.
  • People involved in the drug trade should not face harsh or disproportionate punishments, where retained.
  • The death penalty should never be imposed for drug offences.
  • Drug policy should focus on health, well-being, and harm reduction.
  • Drug policy budgets need rebalancing to ensure health and harm reduction-based responses are adequately financed.

Last year, despite the COVID-19 pandemic, the Global Day of Action saw 288 events in 239 participating cities in 90 countries. The activities organised were incredibly varied and involved over 150 community representatives. In twelve of the regions, networks of people who use drugs were joined by initiatives from convergent movements (including people living with HIV, sex workers, and service providers), strengthening a solidarity block against criminalisation.

This year, we urge you to join the Support.Don’t Punish Global Day of Action. Visit their homepage to check out where activities are taking place near you, and use these resources to amplify the campaign’s messages on social media, including on Facebook, Twitter and Instagram.

HJN commemorates the International Day Against Homophobia, Transphobia and Biphobia!

Today, May 17, is celebrated globally as the International Day Against Homophobia, Transphobia, and Biphobia (IDAHOT).

According to the May 17 website, the day “represents a major global annual landmark to draw the attention of decision-makers, the media, the public, corporations, opinion leaders, local authorities, etc. to the alarming situation faced by people with diverse sexual orientations, gender identities or expressions, and sex characteristics.”

This is a day to not only say no to violence and discrimination against LGBT+ persons but also a rallying cry to ensure equality, dignity, and full respect for human rights of all sexual and gender minorities, including all LGBT+ living with HIV.

The day was created in 2004 to draw attention to the violence and discrimination experienced by LGBT+ people and all other people with diverse sexual orientations, gender identities or expressions, and sex characteristics.  The date of May 17 was specifically chosen to commemorate the World Health Organization’s decision in 1990 to declassify homosexuality as a mental disorder.

The theme for this year is “Together: Resisting, Supporting and Healing”

At HJN, we note that HIV still disproportionately affects many in the LGBT+ community. In many regions of the world, punitive laws and practices against LGBT+ individuals continue to block effective responses to HIV. Evidence and experience have shown that punitive laws and practices drive sexual minorities away from HIV services.

Some of these punitive practices include criminalisation of same-sex relationships, ‘effeminate’ behavior, cross-dressing, sodomy, and ‘gender impersonation.’

To learn more, this Wednesday, the UK’s All-Party Parliamentary Groups on HIV & AIDS; Global LGBT+ Rights; and STOPAIDS will host a virtual parliamentary event: HIV and the criminalisation of LGBT+ communities to mark the International Day Against Homophobia, Transphobia, and Biphobia.

The event will bring together leading HIV and LGBT+ community representatives from around the world. Through a panel discussion and Q&A, they’ll be exploring the barriers that LGBT+ communities face from realising their right to health and how parliamentarians and the UK Government can advance the decriminalisation of LGBT+ and HIV.

Chaired by Rt Hon David Mundell MP, panelists include:

  • Joel Simpson – Managing Director, Guyana’s Society Against Sexual Orientation Discrimination (SASOD Guyana)
  • Simran Shaikh, Co-Founder of Rajmala Welfare Society and Director Transgender Health at John Hopkins University School of medicine
  • Jesse Sperling, Deputy Director, Kaleidoscope Trust
  • He-Jin Kim, Regional Key Populations Programme Officer, AIDS and Rights Alliance for Southern Africa (ARASA)
  • Saoirse Fitzpatrick, Advocacy Manager, STOPAIDS

To RSVP, please email Anna Robinson at anna.robinson@parliament.uk

It’s all about justice and love this Valentines!

HIV Justice and Love

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.

#LovePositiveWomen Campaign

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.”

You can follow the conversation using #LovePositiveWomen on social media.

#LoveandAccountability Campaign – What are you loving?

Initiated by Accountability International, their annual Valentine’s campaign has focused on a variety of thematic areas including consent, Resolution 275, and challenging criminalisation, among others.

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.

With love,

The HJN Team

The Importance of Human Kindness and
Connection: Sero’s Holiday Card Project

In an era where the term ‘lockdown’ is used to limit our movements, spare a thought for the many prisoners living with HIV (some of whom have been unjustly convicted under HIV criminalisation laws) who are experiencing real lockdowns and severe isolation.

With community support interventions becoming increasingly formalised, and NGOs pushed to operate in terms of strategic plans, deliverables, outputs and outcomes, Sero’s Holiday Card Project stands as a rare example of an organisation recognising the worth of a project focused solely on gestures of basic human kindness.

Last year, the project delivered Holiday cards to around 900 incarcerated people, most of whom are living with HIV. For some, it was the only mail they received all year.

So how did the Holiday Card Project come to be, has it made a difference, and how can you help this year?


Back in the 1980s and ’90s, Cindy Stine lost a lot of friends to HIV. In 1996, just before effective treatments became available, she lost a close friend who was like a son. She made a promise to him that she would continue to be involved in the AIDS response. That’s a promise she’s kept.

Cindy Stine of the Sero Project

In 2011, Cindy was serving on the board of a local LGBT centre when she invited two speakers from the fledgling Sero Project to speak at an event. The speakers were Sean Strub, Sero’s Executive Director, and Robert Suttle. Sean introduced the audience to the concept of HIV criminalisation, a new issue for most, including Cindy. Robert talked about what it means to live as an HIV criminalisation survivor, explaining that as the result of an HIV non-disclosure charge, he served six months in the Louisiana state prison and would be registered as a sex offender for 15 years. Robert showed an image of his driver’s license, with ‘sex offender’ stamped in bold red lettering: ID he has to show often and in many different circumstances.

Cindy approached Sean and Robert to let them know that she wanted to help. A few days later, Sean rang Cindy and invited her to his office where he showed her a stack of letters that Sero had received from people in prison. Sean asked Cindy if she’d volunteer to take on the task of answering the letters. She agreed.

Things could have ended there, with Cindy answering people’s individual letters, but as Cindy read those letters week after week, each letter more heart-breaking than the last, she began to really appreciate the isolation, loneliness and desperate need for connection experienced by many of those inside. She talked it over with her Sero colleagues, and they decided their efforts to build a movement against HIV criminalisation needed to expand to be more inclusive of those who were incarcerated; those directly impacted by HIV criminalisation. They decided to explore how they could support development of a prisoners’ network, starting by compiling a database of contact details of those who’d written.

As Sero grew, Cindy was employed to take on community education and other projects but her work answering prisoners’ letters continued. Cindy says of those letters, “sometimes the people writing didn’t even have access to paper, so they’d write on any scrap of paper they could find – recycled envelopes or bits of paper torn off something else. Many of those sending letters weren’t really literate but they wanted to communicate.”

As the 2015 Holiday season approached, Cindy found the letters got harder to read. “A lot of people wrote about loneliness and about their families disowning them after finding out they had HIV, or were gay, or were transgender. People felt they’d been thrown away and forgotten.” Then she had a simple thought, “Wouldn’t it be nice for them to know that they’re not alone.” Then another, “We should send Holiday cards”. She took the idea to Sean, who agreed.

By then, Cindy’s database was so large that she realised Sero would need to prioritise who got cards, focusing on those who were incarcerated as a result of HIV, or they had HIV or another debilitating illness. Cindy also wanted to ensure each person got at least three or four cards but … how to go about it? Cindy put out a call to the 900 or so people on the Sero list-serve asking if anyone was interested in writing some Holiday cards. The response was overwhelming. Many offered to help, with some asking to do 20 cards, some asking to do 200.

The Holiday Card Project has continued each year since then. People express an interest, Cindy sends them a list of first names; they write message on the cards, put them in blank envelopes and return them to Sero; Cindy sorts them, addresses them, and mails them off.

Those who write cards come from all different parts of the community, including some working in other HIV advocacy organisations, some parents of prisoners, and some people living with HIV. People are asked not to ask personal questions but to write messages of support: things like ‘hope you’re doing well’, ‘we’re thinking of you’, and ‘you’re not forgotten’. Some write about themselves, their experience living with HIV, their thoughts and prayers. Some write, ‘we’re thinking of you when we fight HIV criminalisation’.

Sero’s staff and volunteers

One group gets together and spends a day each year writing Holiday cards. People come from all over, saying it feels really good coming into a non-judgemental space and writing messages from the heart. Sometimes Sero will set up a table at a conference and invite people to write cards. Others write cards at home. People feel involved. Each step in the process has meaning: the choice of card, the choice of words, with many people sending their cards with stamps to send them on, to further support the project.

Last Holiday season, about 900 people received cards in facilities across the US, including people on death row. The responses from those who received cards is humbling. Some said, it was the only card they’d received all year, but those cards meant that they knew they were not forgotten. They couldn’t describe the feeling of hearing someone from the mailroom say, ‘You’ve got mail’. They knew that somebody out there had thought enough of them to send a card. Recently Cindy received a letter from a man who’s recently been released. He said that for the last three years he’d so looked forward to those cards as it was the only mail he got. It meant a lot that people had taken the time to write.

The project is not without its challenges. Cindy spends considerable time keeping track of people, as prisoners are often moved. There are also major issues regarding mail screening. Although Cindy has worked to build a rapport with those managing mail distribution at many of the prisons, that hasn’t guaranteed mail is always received. Mail screening rules differ from state to state, institution to institution, and the rules keep changing. Some prisons have now banned cards altogether, some won’t allow glue or glitter or coloured paper, etc. If mail is considered contraband it may be thrown out or returned to Sero. That process has at times driven Cindy to photocopy returned cards, sending the copies in the hope the person will still receive the good wishes.

The Holiday Card Project may have modest goals – to show compassion and care to those who feel abandoned, but it has delivered far more. It has made a difference to the lives of many, letting them know that there are people outside of prison ready to provide support. It has raised awareness about HIV criminalisation and provided a mechanism for people to show they care. It has also helped build trust between prisoners and Sero, a facor that has proven critical to the development of a stronger prisoners’ network and greater engagement with Sero. A stronger prisoners’ network has meant more support for those inside, and it has also resulted in other great projects, like Turn It Up, the health magazine that includes information about HIV for those in prison, largely written by people who are, or have been, incarcerated.

Some of Sero’s Holiday cards

While Sero is best known for its HIV criminalisation reform programmes, its efforts to support network building and empowerment have proven equally important. Sero operates from the belief that those most directly impacted should be at the centre of this work, which is why facilitating the creation and strengthening of networks of People Living with HIV and allies, particularly those representing key populations, remains critical and a priority.

Every year the Holiday Card Project has grown, with prisoners writing to Cindy to let her know if they’ve been moved to another facility. Others write saying, “a friend of mine got cards. Can I be put on the list?” Parents get in touch too, asking for their children to be added to the list, and also writing letters of thanks for cards received.

Still, Cindy thinks there is room for the project to grow; sending cards for holidays celebrated by other religions at other times of the year, and also considering whether cards could be sent for some non-religious events, such as Halloween or Thanksgiving. That way the project can become more inclusive and people won’t have to wait an entire year for mail. Of course, that will mean attracting more people to write cards so that more people can receive them.

 

If you’re interested in supporting the work of the Holiday Card Project, please contact Cindy at cindy.stine@seroproject.com, Subject – Holiday Card Project.

 

 

 

US: New initiative to combat Anti-Black racism, end criminalisation of pandemics and abolish systems of imprisonment

Announcing the Health Not Prisons Collective

As Calls for Justice Echo Around the United States, National Groups Led by Most-Policed Communities Affected by HIV and COVID-19 Join in Partnership

The Health Not Prisons Collective Vows to Combat Anti-Black Racism, End Criminalization of Pandemics and Abolish Systems of Imprisonment

 June 18, 2020: The Health Not Prisons Collective is a new, three year national initiative of longtime collaborators led by, and accountable to, communities most affected by HIV criminalization in the United States: Counter Narrative Project, Positive Women’s Network – USA (PWN), Sero Project, Transgender Law Center, and the U.S. Caucus of People Living with HIV (The Caucus).

HIV criminalization is the wrongful use of a person’s HIV-positive status in a criminal prosecution, including charging people living with HIV (PLHIV) under HIV-specific criminal statutes, or under general criminal statutes, for behaviors which would not be crimes if the person did not have HIV. There is little legal or other support available for those charged with HIV crimes, yet the consequences of being charged under an HIV criminalization law are severe, even without conviction, and persist long after a person leaves the criminal justice system.

Collectively, and with steadfast allies, the founders of the Collective have pushed criminalization to the forefront of the HIV policy agenda. Now, in the first year of the COVID-19 pandemic, the Collective will build the power of the intersectional national HIV movement led by Black, Indigenous and people of color (BIPOC), women, LGB people, and transgender and gender non-conforming people (TGNC) to refocus our efforts instead of blame, punishment and the denial of basic needs.

Criminalization is never a solution to health challenges. Communities that are already heavily surveilled, policed, and criminalized bear the brunt of HIV criminalization are at the highest risk of harm from COVID-19 related surveillance, policing, criminal charges and/or penalty enhancements. A response rooted in policing and criminalization not only undermines public health and human rights, but jeopardizes the long-term survival of our communities.

“The specifics of the COVID-19 pandemic may be unprecedented — but the racial disparities, intensification of stigma and marginalization, and threats of criminalization in the COVID-19 pandemic are sadly not unanticipated to those of us living with HIV,” said Andrew Spieldenner of the U.S. Caucus of People Living with HIV. “As we work together to overturn the criminalization of HIV baked into policies and laws decades ago, we will also urge our communities and leaders to repudiate the panic and reactive thinking that says police, prosecutors and prisons are the way to handle public health emergencies like COVID-19.”

With support from Gilead Sciences, the Collective’s three-year strategy incorporates political education and training; grassroots and grasstops organizing; policy analysis and advocacy; legal intervention; and narrative change designed to shift discourses about HIV, risk, blame, responsibility, and the role of the carceral state in public health, centering racial and gender justice.

“Most HIV criminalization laws in the U.S. were established at a time when less was understood about HIV transmission. There’s no evidence it has ever contributed to HIV transmission reduction. Today, it directly contradicts current public health efforts to encourage people to know their HIV status and engage in health care and treatment; very few laws have been updated in light of advances in scientific advancements,” explained Tami Haught of Sero Project.

“We can’t stop HIV or COVID-19 criminalization without recognizing the underlying politics of racism, blame and bias that fuel them,” said Charles Stephens of Counter Narrative Project “Only a strategic and sustained movement led by those most targeted by criminalization ourselves and that changes the very narratives of blame in our society will overcome the root conditions that make it politically feasible to pin harm on vulnerable individuals from targeted communities.”

“Successful advocacy to end HIV criminalization requires centering PLHIV and those from overpoliced communities. Despite limited resources, members of the Collective have already had significant success in advancing the community and public discourse as well as influencing policy,” explained Cecilia Chung of Transgender Law Project. “We must now remove the remaining barriers that stop our leaders, including transgender and gender non-conforming Black and brown people, disabled people and others, from scaling up our movement and winning the freedom to thrive as we are.”

Due to lack of resources, work on HIV criminalization to date has largely been episodic, resulting in less coordination and varying results. This coordinated, strategic, multi-year effort will fill a critical gap at the nexus of policy, grassroots organizing, movement building, increasing political will to decriminalize, and culture change at a vital time. The Collective urges funders and people of privilege to invest in multi-year initiatives, honoring the passion and truths of communities with the resources it takes to rapidly scale efforts to win significant, lasting change.

“Our members are on the frontlines of pandemics, and they’re also deep in the resistance to overturn the system that profits from anti-Black racism and violence,” said Naina Khanna of Positive Women’s Network – USA. “We need to honor their commitment and vision with resources. Ongoing dedicated funded initiatives have the best chance to shift the social, legal and political landscape of our nation.”

 If you need help with a pandemic-related prosecution or threat, contact Sero Project for HIV-related issues and Community Resource Hub for COVID-19-related issues.

LEARN MORE ABOUT THE HEALTH NOT PRISONS COLLECTIVE HERE

The Elizabeth Taylor AIDS Foundation leads multi-state effort to decriminalise HIV and modernise laws leading to discrimination

The Elizabeth Taylor AIDS Foundation Launches Initiative for Modernization of Laws and Criminal Penalties for People Living with HIV

The Foundation partners with Gilead Sciences, Inc. and the Health Not Prisons Collective on a major, multi-state effort to decriminalize HIV and modernize laws that lead to the discrimination of people living with HIV.

LOS ANGELESJune 18, 2020 /PRNewswire/ — The Elizabeth Taylor AIDS Foundation (ETAF) announced today a new national initiative focused on the modernization of criminal laws and penalties for people living with HIV. The effort will launch in partnership with Gilead Sciences, Inc., and a national alliance of advocacy partners including The Counter Narrative Project, Positive Women’s Network, The Sero Project, Transgender Law Center, and the US People Living with HIV Caucus. The Artemis Agency, a Los Angeles-based social impact firm, will be working with ETAF on the public education and awareness campaign. ETAF will also partner with state-based organizations as needed to ensure the initiative’s success.

Catherine Brown, ETAF Executive Director explains, “Very simply, science and the law have not caught up with each other on this issue, there is a disparity between what science tells us and what the laws and statutes in more than 30 states believe. HIV is not a crime, and those living with HIV are being held back by harmful laws and policies that discourage people from getting tested and treated.”

Gilead Sciences, Inc., a research-based biopharmaceutical company with headquarters in Foster City, California, is committed to the initiative and to supporting ETAF and The Health Not Prisons Collective.

“Gilead is proud to support this critical work against the criminalization of HIV,” said Brett Pletcher, Executive Vice President of Corporate Affairs and General Counsel. “These outdated and unjust laws disproportionately affect marginalized communities and further perpetuate the misinformation and stigma that result in decreased testing and poorer health outcomes. This collaborative initiative creates the possibility for systemic change that moves us closer to our collective vision of a more just society, free from discrimination and othering.”

On June 25th, ETAF will host a virtual town hall event to launch the initiative and address the effects of the current environment on the HIV community, as racial inequality and COVID-19 have disproportionately affected and threatened the lives of those who have been incarcerated as a result of their HIV status.

The campaign to modernize criminal laws and penalties that target people living with HIV will focus its initial efforts in Nevada and Ohio, where staffers will work with local advocates to prepare and introduce legislation. The effort also intends to address issues of insurance discrimination against people living with HIV in California, and will support legislation introduced in Missouri once COVID-19 restrictions are lifted for lawmakers in that state.

Read more about The Town Hall on July 25, 2020 and ETAF here: https://elizabethtayloraidsfoundation.org

More information about Gilead’s community work in HIV here: https://www.gilead.com/purpose/partnerships-and-community

About The Elizabeth Taylor AIDS Foundation
Working tirelessly on the AIDS crisis through the 1980s, Elizabeth Taylor established The Elizabeth Taylor AIDS Foundation (ETAF) in 1991 to reach her vision of an AIDS-free world. ETAF works to provide the direct care needed for people living with and affected by HIV and AIDS. Emphasizing Elizabeth’s commitment to marginalized communities, ETAF’s work ensures that HIV prevention education and access to treatment are available through domestic and international initiatives. HIV Decriminalization nationally, is ETAF’s primary advocacy initiative. We now have the necessary tools to stop the spread of HIV and end the AIDS crisis with sufficient resources.

Media Contacts
Catherine A. Brown
Executive Director
cbrown@etaf.org
310-339-3643

SOURCE The Elizabeth Taylor AIDS Foundation

HIV JUSTICE WORLDWIDE Steering Committee
Statement on COVID-19 Criminalisation

Communicable diseases are public health issues, not criminal issues: what we have learnt from the HIV response

Measures that are respectful of human rights and the empowering of communities are more effective than punishment and imprisonment.

As the world struggles with a new global pandemic, law- and policymakers are taking drastic measures in an attempt to minimise the spread of SARS-CoV-2, the virus that causes COVID-19. The situation continues to evolve rapidly and, as it does so, our liberties are being limited in unprecedented ways.

We remind law- and policymakers that each and every limitation of rights should satisfy the five criteria of the Siracusa Principles, as well as be of a limited duration and subject to review and appeal. These principles are:

  • The restriction is provided for and carried out in accordance with the law;
  • The restriction is in the interest of a legitimate objective of general interest;
  • The restriction is strictly necessary in a democratic society to achieve the objective;
  • There are no less intrusive and restrictive means available to reach the same objective;
  • The restriction is based on scientific evidence and not drafted or imposed arbitrarily, that is in an unreasonable or otherwise discriminatory manner.

We also warn law- and policymakers against the temptation to use the criminal law or other unjustified and disproportionate repressive measures in relation to COVID-19. These measures can be expected to have a devastating impact on the most vulnerable in society, including those who are homeless and/or living in poverty, as well as individuals from marginalised and already stigmatised or criminalised communities – especially where no economic and social support is provided to allow people to protect themselves and others, including through self-isolation.

As a global coalition campaigning to abolish criminal and similar laws, policies and practices that regulate, control and punish people living with HIV based on their HIV-positive status, we know the deleterious consequences of the criminalisation of diseases on both human rights and public health.

Criminalisation disproportionately impacts the most marginalised, stigmatised and the already criminalised people and communities in society.

 

Criminalisation is not an evidence-based response to public health issues. In fact, the use of the criminal law most often undermines public health by creating barriers to prevention, testing, care, and treatment – for example, people may not disclose their status or access treatment for fear of being criminalised.  It can also lead to ill-informed ‘trial’ by social and news media, and to a myriad of human rights violations, from arbitrary arrests and detentions to unfair trials (or no trials at all under new emergency measures) and harsh prison sentences. This can also lead to the spread of infections and communicable diseases in prisons and is of particular relevance in the context of COVID-19, which reveals, once again, the need to address overcrowding and other poor healthcare and sanitation conditions that are all too common in prisons and other closed settings.

Our experience has taught us that hastily drafted laws, as well as law enforcement, driven by fear and panic, are unlikely to be guided by the best available scientific and medical evidence – especially where such science is unclear, complex and evolving. Given the context of a virus that can easily be transmitted by casual contact and where proof of actual exposure or transmission is not possible, we believe that the criminal justice system is unlikely to uphold principles of legal and judicial fairness, including the key criminal law principles of legality, foreseeability, intent, causality, proportionality and proof.

The human rights of those involved in criminal cases related to COVID-19 are at risk of being ignored or violated.

 

We therefore urge law- and policymakers, the media, and communities at large, to keep human rights front and centre as we collectively respond to a new public health crisis in a climate of fear and uncertainty. It is more critical than ever to commit to, and respect, human rights principles; ground public health measures in scientific evidence; and establish partnerships, trust, and co-operation between law- and policymakers and communities.

The HIV JUSTICE WORLDWIDE Steering Committee, comprising: AIDS Action Europe; AIDS and Rights Alliance for Southern Africa (ARASA); Canadian HIV/AIDS Legal Network; Global Network of People Living with HIV (GNP+); HIV Justice Network;  International Community of Women Living with HIV (ICW); Positive Women’s Network – USA; Sero Project; and Southern Africa Litigation Centre.

 

Additional references

Last week, a group of human rights experts at the United Nations warned governments against the abuse of emergency measures to suppress human rights:

“While we recognize the severity of the current health crisis and acknowledge that the use of emergency powers is allowed by international law in response to significant threats, we urgently remind States that any emergency responses to the coronavirus must be proportionate, necessary and non-discriminatory,” the experts said. “Restrictions should be narrowly tailored and should be the least intrusive means to protect public health.” Also, authorities must seek to return life to normal and must avoid excessive use of emergency powers to indefinitely regulate day-to-day life.”

UNAIDS also issued guidance last week that included a number of recommendations, including recommending that States “avoid the use of criminal laws when encouraging behaviours to slow the spread of the epidemic”, noting that empowering and enabling people and communities to protect themselves and others will have a greater overall effect.

And, as described in a recent open letter by more than 800 public health and legal experts in the United States providing recommendations to government officials: “Voluntary self-isolation measures [combined with education, widespread screening, and universal access to treatment] are more likely to induce cooperation and protect public trust than coercive measures and are more likely to prevent attempts to avoid contact with the healthcare system.”