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

Report: End HIV criminalisation to address LGBT+ inequities

A new report published by the Global Equality Caucus examines what elected officials can do to ensure LGBT+ people receive equitable access to HIV healthcare.

The report titled Breaking barriers in HIV: Action for legislators to address LGBT+ inequities, includes ten recommendations for legislators and others to take forward, including repealing or modernising outdated HIV criminalisation laws, and doing more to safeguard health data privacy.

The report notes that HIV criminalisation laws are “out of step with modern scientific understanding and perpetuate outdated HIV stigmas.” Removing such laws would help to tackle prejudice and refocus HIV as a public health crisis.

Also relevant to our ongoing work on molecular HIV surveillance, the report further recommends that where data is collected, anonymity should always be assured, and “this applies to HIV testing, immigration status, or whatever other circumstances that may place LGBT+ people in danger should their health data be shared with other government authorities.”

Parliamentarians have a responsibility to ensure government departments respect the privacy of citizens and that health data is not being shared with agencies that could present additional barriers to the lives of LGBT+ people, such as immigration authorities or justice departments.

Health Not Prisons Dispatch: June 2021

The Health Not Prisons Dispatch is a monthly bulletin highlighting recent developments relevant to criminalisation and policing of people living with HIV in the United States, along with upcoming events, relevant resources, and opportunities to get involved.

The June edition is available here: https://www.pwn-usa.org/issues/the-health-not-prisons-collective/health-not-prisons-dispatch/june-2021-health-not-prisons-dispatch

For more information about the coalition email Tyler Barbarin at tyler@pwn-usa.org.

The PJP Update – May 2021

The May 2021 edition of the Positive Justice Project newsletter is available here

WATCH! From Moment to Movement: HIV Justice Live! Ep 3 – Oslo Declaration 9th Anniversary

From Moment to Movement: HIV Justice Live! celebrates the Oslo Declaration on HIV Criminalisation

The 3rd episode of HIV Justice Live! aired on Wednesday, February 17, to celebrate nine years since the publication of the historic Oslo Declaration on HIV Criminalisation. Hosted by HIV Justice Network’s Edwin J Bernard, the show featured some of the advocates who were behind the Oslo Declaration.

Kim Fangen, co-organiser of the side-meeting that finalised the Oslo Declaration, and who was the only person openly living with HIV on the Norwegian Law Commission, revealed that the Declaration was initially conceived as an advocacy tool to influence policy discussions in Norway as well as neighbouring Nordic countries.

Patrick Eba, now UNAIDS Country Director in the Central African Republic, explained that the reason the meeting took place in Oslo was because the Norwegian Government had supported UNAIDS to produce detailed guidance on how countries should deal with the overly broad use of the criminal law to HIV non-disclosure, exposure and transmission, by examining scientific, medical and legal issues.

Former ARASA ED, Michaela Clayton, now a member of HJN’s Supervisory Board, said the Oslo Declaration was the first time there was a coming together of activists from both the global north and south around HIV criminalisation. She noted that although there had been some work done regionally and in-country, this was the first global solidarity statement around HIV criminalisation.

Ralf Jürgens, now Senior Coordinator of Human Rights at The Global Fund, who attended the Oslo meeting in an advisory capacity, spoke about his relief and delight that the work that he and others had done as part of the ‘first-wave’ of advocacy against HIV criminalisation was now being undertaken by the HIV Justice Network. Jürgens currently oversees the innovative Global Fund initiative, Breaking Down Barriers, which supports 20 countries to remove human rights-related barriers to health services for HIV, TB malaria, and COVID-19. He said the Global Fund has invested resources to fight laws and policies and discrimination overall and ensure access to justice. He added that the HIV Justice Worldwide movement now plays an “incredibly important” part in this work by providing global leadership and a wide range of advocacy resources.

There was a surprise appearance by Susan Timberlake, who was UNAIDS’ Senior Human Rights Advisor when the Oslo meetings took place. She recognised the Oslo Declaration as the moment that the global movement around HIV criminalisation began. Susan recalled the main meeting fell on Valentine’s Day and participants made posters with “make love, not criminal laws” messaging.

Our regular Mind the Gap segment featured Ellie Ballan, a member of our Global Advisory Panel, who is based in Lebanon. He was interviewed by Julian Hows, HJN’s Partnerships and Governance Co-ordinator.

The Oslo Declaration, has so far, garnered over 1750 signatories from more than 115 countries and been translated into nine different languages, the most recent being Latvian and Turkish. It was also the template for the Mexican Declaration in 2017.  Pozitif Dayanışma, an HIV organisation based in Turkey recently translated the Declaration into Turkish, as well as producing an accompanying info-graphic and social media pack.

Further, the Oslo Declaration has been referred to as key guidance on HIV criminalisation from global organisations such as UNAIDS, Amnesty International, and PEPFAR/USAID, cited in several peer-reviewed journals and used as a strategic planning and advocacy tool all over the world. The Declaration has also been featured in high-profile media, such as the New York Times, the Huffington Post, and POZ magazine.

New UNAIDS report summarises key developments in the legal environment for HIV responses in Asia Pacific region

Legal and policy trends impacting people living with HIV and key populations in Asia and the Pacific 2014–2019

This report provides a summary of key developments in the legal environment for HIV responses in Asia and the Pacific. It is the product of a desk review conducted for UNAIDS and the United Nations Development Programme (UNDP) in 2019. The report highlights key trends and developments in laws affecting people living with HIV and key populations in Asia and the Pacific over the five-year period 2014–2019. It updates the legal and policy review conducted in 2016 for UNAIDS, UNDP and the United Nations Economic and Social Commission for Asia and the Pacific (ESCAP). A database of laws of the 38 Member States of ESCAP was created as part of this review. The database identifies laws that are either punitive or enabling for people living with HIV and key populations in Asia and the Pacific. A summary of the findings is presented in Annex 1. An overview poster is also available.

The report can be downloaded here.

Canada: HIV Legal Network publishes new guide to assist journalists in reporting responsibly about HIV criminalisation cases

Media Reporting: HIV and the Criminal Law

This guide is an evidence-based resource to assist journalists in Canada in reporting responsibly and accurately about alleged HIV non-disclosure and resulting criminal cases.

People living with HIV in Canada can be prosecuted for “aggravated sexual assault” (one of the most serious charges in the Criminal Code) if they don’t tell their sexual partners, in advance of intimate contact, that they have HIV. The criminalization of “HIV non-disclosure” is severe and rooted in stigma: people face charges even in cases where there is little or no risk of transmitting HIV. The maximum penalty is life imprisonment, and a conviction carries with it a mandatory designation as a sex offender. This approach has been criticized, both domestically and internationally, as being contrary to human rights and principles of public health, including by United Nations experts. Instead of reducing HIV transmission, HIV criminalization is now recognized by many experts as a driver of the epidemic.

There have been dramatic advances in treating and preventing HIV, which have resulted in a gradual change in public discourse and understanding. But there’s still a lot of misinformation. Media can play a vital role by modernizing the discussions we’re having about HIV and by reporting about HIV non-disclosure in an evidence-based and responsible way that doesn’t perpetuate stigma.

The guide is available in English and in French

The PJP Update – July 2020

The July 2020 edition of the Positive Justice Project newsletter is available here.

How is the Expert Consensus Statement bringing science to justice?

Two years ago this month saw the launch of the Expert consensus statement on the science of HIV in the context of criminal law (Expert Consensus Statement) at a press conference during AIDS2018 in Amsterdam, published in the Journal of the International AIDS Society (JIAS), and translated into French, Russian and Spanish.

Authored by 20 of the world’s leading HIV scientists, and endorsed by more than 70 additional expert scientists, as well as IAPAC, IAS and UNAIDS, the Expert Consensus Statement described current evidence on HIV transmission, treatment effectiveness and forensics so that HIV-related science may be better understood in criminal law contexts.

The Expert Consensus Statement was the end result of a multi-year process developed by a partnership comprising the International AIDS Society (IAS), the International Association of Providers of AIDS Care (IAPAC), the Joint United Nations Programme on HIV/AIDS (UNAIDS) and the HIV JUSTICE WORLDWIDE Steering Committee.

The HIV Justice Network has now published an interim scoping report, written by HJN’s Senior Policy Analyst Sally Cameron, that explores the impact of the Expert Consensus Statement in the two years since its publication.  It is now available in English and French (see bottom of page for download links).

The report concludes that the Expert Consensus Statement is meeting both its primary aim (to support defence arguments in HIV criminalisation cases) and its secondary aim (supporting lobbying for law and policy reform) in many jurisdictions. But it also found that the process of developing and promoting the content of the Expert Consensus Statement has delivered additional benefits that further support advocacy efforts to end HIV criminalisation.

In summary, the Expert Consensus Statement is being used to:

  • Assist HIV criminalisation defence arguments and strategic litigation, changing courts’ understanding of transmission risks associated with HIV and the effectiveness of modern treatments.
  • Shape advocacy for law and policy reform, including mobilising stakeholders to lobby for reform, delivering law and policy reform, improving legal and judicial practice, facilitating community advocates’ access to government and judicial bodies, and gaining support from public health bodies and customary and religious leaders.
  • Inform scientific and medical thinking, including being cited in many peer reviewed articles and in scientific and medical press, being hosted on the sites of scientific/medical/academic organisations, and being ranked the #1 JIAS article to date.
  • Develop stronger relationships that cross silos and advance capacity, enabling efficient and informal communications between partners to rapidly move projects forward, with Expert Consensus Statement authors supporting community organisations by assisting in defence cases, answering ad hoc questions and co-authoring abstracts, presentations and articles.
  • Disseminate accurate, positive messages about people living HIV and the issue of HIV criminalisation, including facilitating keynote addresses and presentations at notable conferences and meetings, and generating global mainstream, community and social media. Ultimately, interest in the Expert Consensus Statement has elevated the global conversation about HIV criminalisation, with co-ordinated messaging translating into a powerful positive narrative in many sites.