US: Closing session of CDC's national HIV Prevention conference highlights stigma and HIV-specific criminalisation laws as barriers to improving outcomes in prevention and care

HIV Stigma in Focus at Closing Session of CDC’s National HIV Prevention Conference

HIV-related stigma and its impact on HIV-related health disparities were the topic of the final plenary session at CDC’s National HIV Prevention Conference. The March 21 session examined social and cultural factors that have contributed to stigma as well as efforts to combat the effects of HIV-related stigma on specific populations. Moderator Johanne Morne, director of the New York State Department of Health AIDS Institute, reminded the conference participants that stigma is an historic and continuing theme that must be addressed to improve outcomes along both the HIV prevention and care continuums.

HIV Stigma and What Can Be Done to Combat It

Greg Millett, vice president and director of public policy at amfAR, delivered the keynote address, “Progress: Same or Different? HIV Stigma at 37.” He noted that while many of the most extreme forms of stigma from the early days of the HIV epidemic have dissipated over time, inaccurate beliefs about the HIV risk of casual social contact persist.

Such stigmatizing beliefs are supported by societal factors such as HIV criminalization laws, Mr. Millett said. He pointed to the fact that 29 states still have HIV-specific criminalization laws on the books and while over 800 people have been prosecuted using these laws, none of the prosecutions were for any actual HIV transmission. He highlighted a CDC assessment that found that HIV criminalization laws have no detectable HIV prevention effect given there was no association with HIV diagnosis rates or AIDS diagnoses in states with such laws.

Further, he observed that not only are people with or at risk for HIV too often stigmatized, but the effective tools to prevent HIV such as PrEP are also stigmatized. A recent study found that individuals who experienced a high degree of stigma around their choice to use PrEP were 50% less likely to be on PrEP at their next clinical visit. Additionally, he pointed to syringe services programs (SSPs) that are known to reduce the risk of HIV transmission among people who inject drugs. Yet, stigma related to both HIV and people who use drugs limits public support for SSPs, limiting their expansion in many communities that could benefit from them, he said.

One factor that may enable this enduring stigma, Mr. Millett posited, is Americans’ lack of personal knowledge of people living with HIV. A Kaiser Family Foundation study found that only 45% of Americans say they know someone with HIV. To counter that, he encouraged more people living with HIV to be open about their status since that would contribute to stigma reduction. He also applauded creative efforts from the HIV community to combat stigma. These included public announcements by people living with HIV of their status on social media, anti-stigma campaigns, and even a series of social media videos about living with HIV.

Combatting HIV-related Stigma and Improving Outcomes for Specific Populations

A series of presentations followed, each discussing unique approaches to combating HIV stigma and offering recommendations on how to help reduce it to improve HIV prevention and care outcomes.

  • Daniel Driffin, co-founder of THRIVE SS, discussed building innovative, community-driven solutions to address HIV disparities among African American men living with HIV. Originally founded as a support group in Atlanta, the program has grown to an online platform that engages and offers support to more than 3,500 people across the southeast United States. Among THRIVE SS’s innovations are programs to re-engage and retain men in HIV care, a mental health group, and a photo campaign. Mr. Driffin shared results of a 2018 program participant survey that revealed that 92% of the men surveyed self-reported being virally suppressed. “Black men living with HIV are achieving viral suppression,” Mr. Driffin declared. “I challenge you to no longer say these men are ‘hard to reach.’” His advice for others seeking similar outcomes included: using the lived experiences of people living with HIV to inform HIV care and prevention, re-imagining everything, and supporting community-created approaches.
  • Omar Martinez, assistant professor at Temple University’s School of Social Work, examined HIV-related stigma among sexual and gender minority Latinx individuals. He observed that members of this community often experience stigma related to many aspects of their lives including culture, language, and immigration status, all of which impact their HIV risk. Dr. Martinez profiled several programs that have demonstrated success, including a number that engage non-traditional partners or that address legal and other needs. He advised stakeholders to focus on affirming models of care; to examine immigration status as a social determinant of health; and to continue to invest in the development and replication of “locally-grown” HIV prevention, treatment, and anti-stigma interventions that have proven effective.
  • Gail Wyatt, PhD, professor and director of the UCLA Sexual Health Program, discussed HIV stigma and disparities among African American women, reminding the audience of the importance of the inclusion of women’s perspectives in HIV prevention, care and treatment, and research. She discussed the impact of trauma on women’s health-seeking behaviors and treatment retention. She emphasized that an effective HIV response requires attention to holistic health, including mental health, to improve outcomes for women living with HIV. She also argued that some health care providers need to be re-educated about African American women given that many have biases about Black women that may hinder their delivery of effective health care services.
  • Cecilia Chung, co-director of programs and policy at the Transgender Law Center, shared her personal story as an Asian transgender woman living with HIV and discussed the power of personal storytelling to change hearts. She remarked, “Storytelling can help us get past differences, stigmas, and biases, and humanize individuals.” Being able to confidently tell one’s story affects the listener and also empowers the storyteller as they move forward on their path as a person living with HIV.

Dr. Eugene McCray, Director of CDC’s Division of HIV/AIDS Prevention, closed the session, thanking the participants from across the nation and the more than 500 of them who had shared results of their work with others in sessions, poster presentations, and exhibits during the conference. He noted that CDC was pleased to have been able to share more details of the Ending the HIV Epidemic Plan through several plenary session addresses and in a community engagement session. Implementing that Plan, he observed, will require ongoing dialogue and collaboration. With the powerful tools now available, the insights that data offer, leadership from all sectors, and community-driven and -developed plans, Dr. McCray indicated that he was confident that the nation could achieve the goal of reducing new HIV infections by 90% in ten years.

To view all or part of this plenary session, view CDC’s National Prevention Information Network video of Wednesday’s plenary session on their Facebook page .

Beyond Blame 2018 Meeting Report and Evaluation Now Available

Beyond Blame 2018: Challenging HIV Criminalisation was a one-day meeting for activists, advocates, judges, lawyers, scientists, healthcare professionals and researchers working to end HIV criminalisation. Held at the historic De Balie in Amsterdam, immediately preceding the 22nd International AIDS Conference (AIDS 2018), the meeting was convened by HIV JUSTICE WORLDWIDE and supported by a grant from the Robert Carr Fund for Civil Society Networks.

The Meeting Report and Evaluation, written by the meeting’s lead rapporteur, Sally Cameron, Senior Policy Analyst for the HIV Justice Network, is now available for download here.

Screen Shot 2018-10-03 at 10.56.59The meeting discussed progress on the global effort to combat the unjust use of the criminal law against people living with HIV, including practical opportunities for advocates working in different jurisdictions to share knowledge, collaborate, and energise the global fight against HIV criminalisation. The programme included keynote presentations, interactive panels, and more intimate workshops focusing on critical issues in the fight against HIV criminalisation around the world.

The more than 150 attendees at the meeting came from 30 countries covering most regions of the world including Africa, Asia and the Pacific, Eastern Europe and Central Asia, Latin and North America and Western Europe. Participation was extended to a global audience through livestreaming of the meeting on the HIV JUSTICE WORLDWIDE YouTube Channel, with interaction facilitated through the use of Twitter (using the hashtag #BeyondBlame2018) to ask questions of panellists and other speakers. See our Twitter Moments story here.

Following the meeting, participants were surveyed to gauge the event’s success. All participants rated Beyond Blame 2018 as good (6%), very good (37%), or excellent (57%), with 100% of participants saying that Beyond Blame 2018 had provided useful information and evidence they could use to advocate against HIV criminalisation. 

A video recording of the entire meeting is available on HIV JUSTICE WORLDWIDE’s YouTube Chanel.  

Key points

  • The experience of HIV criminalisation was a poor fit for individual’s actions and the consequences of those actions, particularly where actions included little or no possibility of transmission or where courts did not address scientific evidence
  • The consequences of prosecution for alleged HIV non-disclosure prior to sex are enormous and may include being ostracised, dealing with trauma and ongoing mental health issues, loss of social standing, financial instability, multiple barriers to participation in society, and sex offender registration
  • Survivors of the experience shared a sense of solidarity with others who had been through the system, and were determined to use their voices to create change so that others do not have to go through similar experiences
  • Becoming an advocate against HIV criminalisation is empowering and helps to make sense of individuals’ experiences
  • The movement against HIV criminalisation has grown significantly over the last decade but as the movement has grown, so has understanding of the breadth of the issue, with new cases and laws frequently uncovered in different parts of the world.
  • As well as stigma, there are multiple structural barriers in place enabling HIV criminalisation, including lags in getting modern science into courtrooms and incentives for police to bring cases for prosecution.
  • Community mobilisation is vital to successful advocacy. That work requires funding, education, and dialogue among those most affected to develop local agendas for change.
  • Criminalisation is complex and more work is required to build legal literacy of local communities.
  • Regional and global organisations play a vital role supporting local organisations to network and increase understanding and capacity for advocacy.
  • There have already been many advocacy successes, frequently the result of interagency collaboration and effective community mobilisation.
  • It is critical to frame advocacy against HIV criminalisation around justice, effective public health strategy and science rather than relying on science alone, as this more comprehensive framing is both more strategic and will help prevent injustices that may result from a reliance on science alone.
  • There have been lengthy delays between scientific and medical understanding of HIV being substantiated in large scale, authoritative trials, and that knowledge being accepted by courts.
  • Improving courts’ understanding that effective treatment radically reduces HIV transmission risk (galvanised in the grassroots ‘U=U’ movement) has the potential to dramatically decrease the number of prosecutions and convictions associated with HIV criminalisation and could lead to a modernisation of HIV-related laws.
  • Great care must be exercised when advocating a ‘U=U’ position at policy/law reform level, as doing so has the potential to deflect attention from issues of justice, particularly the need to repeal HIV-specific laws, stop the overly broad application of laws, and ensure that people who are not on treatment, cannot access viral load testing and/or who have a detectable viral load are not left behind.
  • Courts’ poor understanding of the effectiveness of modern antiretroviral therapies contributes to laws being inappropriately applied and people being convicted and sentenced to lengthy jail terms because of an exaggerated perception of ‘the harms’ caused by HIV.
  • HIV-related stigma remains a major impediment to the application of modern science into the courtroom, and a major issue undermining justice for people living with HIV throughout all legal systems.
  • HIV prevention, including individuals living with HIV accessing and remaining on treatment, is as much the responsibility of governments as individuals, and governments should ensure accessible, affordable and supportive health systems to enable everyone to access HIV prevention and treatment.
  • New education campaigns are required, bringing modern scientific understanding into community health education.
  • Continuing to work in silos is slowing our response to the HIV epidemic.
  • HIV criminalisation plays out in social contexts, with patriarchal social structures and gender discrimination intersecting with race, class, sexuality and other factors to exacerbate existing social inequalities.
  • Women’s efforts to seek protections from the criminal justice system are not always feminist; they often further the carceral state and promote criminalisation.
  • Interventions by some purporting to speak on behalf of women’s safety or HIV prevention efforts have delivered limited successes because social power, the structuring of laws and the ways laws are administered remain rooted in patriarchal power and structural violence.
  • Feminist approaches must recognise that women’s experiences differ according to a range of factors including race, class, types of work, immigration status, the experience of colonisation, and others.
  • For many women, HIV disclosure is not a safe option.
  • More work is needed to increase legal literacy and support for local women to develop and lead HIV criminalisation advocacy based on their local context.
  • When women affected by HIV have had the opportunity to consider the way that ‘protective’ HIV laws are likely to be applied, they have often concluded that those laws will be used against them and have taken action to advocate against the use of those laws.

At the end of the meeting, participants were asked to make some closing observations. These included:

  • Recognising that the event had allowed a variety of voices to be heard. In particular, autobiographical voices were the most authentic and most powerful: people speaking about their own experiences. This model which deferred to those communicating personal experiences, should be use when speaking to those in power.
  • Appreciating that there was enormous value in hearing concrete examples of how people are working to address HIV criminalisation, particularly when working intersectionally. It is important to capture these practical examples and make them available (noting practical examples will form the focus of the pending Advancing HIV Justice 3 report).
  • Understanding that U=U is based on a degree of privilege that is not shared by all people living with HIV. It is vital that accurate science informs HIV criminalisation as a means to reduce the number of people being prosecuted, however, people who are not on treatment are likely to become the new ‘scapegoats’. It is important that we take all opportunities to build bridges between U=U and anti-HIV criminalisation advocates, to create strong pathways to work together and support shared work.
  • Noting the importance of calling out racism and colonialism and their effects.
  • Observing that more effort is required to better understand and improve the role of police, health care providers and peer educators to limit HIV criminalisation.
  • Exploring innovative ways to advocate against HIV criminalisation, including community education work through the use of art, theatre, dance and other mechanisms.
  • Concluding that we must challenge ourselves going forward. That we must make the circle bigger. That next time we meet, we should challenge ourselves to bring someone who doesn’t agree with us. That we each find five people who aren’t on our side or don’t believe HIV criminalisation is a problem and we find ways and means (including funding) to bring them to the next Beyond Blame.

Media session at Beyond Blame preconference outlines stigmatising and harmful media reporting

By Mathew Rodriguez

AMSTERDAM, Netherlands — As a news consumer, how can you tell if a story you’re reading about HIV criminalization is actually fair, or has the interests of people living with HIV in mind? Despite a noticeable shift in better coverage for HIV criminalization cases, activists at the Beyond Blame pre-conference to the International AIDS Conference in Amsterdam reported that too many journalists rely on harmful frameworks when reporting stories about potential HIV exposures and people with HIV whose bodies are criminalized.

Here are a few ways to see whether or not you’re being told a story that is doing way more harm than good for people living with HIV, as outlined by Janet Butler-McPhee, director of communications and advocacy at the Canadian HIV/AIDS Legal Network and Nic Holas, co-founder of Australia’s HIV movement The Institute of Many.

The HIV Monster

Though Butler-McPhee said this narrative is slightly fading, too many journalists still rely on this frame as a way to garner clicks. This narrative paints people with HIV as purposefully hiding their status in order to be deceptive to an HIV-negative person or people. This framework also implies that people with HIV have some innate intent to transmit the virus and that HIV-positive people are all terrifying potential perpetrators of criminal activity.

Aside from othering people with HIV, this narrative also turns HIV-negative people into innocent victims with zero agency in their own lives. These narratives often omit pertinent details about the relationship between the accused and accuser. It turns a complex relationship into victims and villains.

It’s racist AF

HIV criminalization and obvious racism go hand in hand. This is very similar to the HIV monster narrative but also relies on racist tropes to tell its story. For instance, in many countries like Canada and the United States, black men are often painted as vectors of disease who are preying on innocent white women or white gay men. This narrative happens with other marginalized groups, as well.

The story claims HIV criminalization will protect you!

Some stories share the names and information about an HIV-positive person’s HIV criminalization case as a form of “public good” — saying that the public deserves to know someone’s private health information. Butler-McPhee stressed that this is unfortunately rooted in the idea that people with HIV do not have basic rights to privacy and that outing them will do more public good than personal bad — which is wrong . Coverage that relies on outing people with HIV is often inherently racist as well. Their names are published to protect white women.

Stories like this once again put all the onus of public health on HIV-positive people. It also sets HIV apart from every other STI or blood-borne infection, reinforcing the stigmatizing idea that it is somehow scarier or deadlier. Coverage like this also retraumatizes the accused.

Additionally, Holas stressed, local police officers often rely on media to get an accused’s name in headlines and stories to get other potential sex partners to come forward to build a case around them. In cases like this, the media may be unknowingly doing the police force’s work to help criminalize a person with HIV.

The story reports that HIV is easy to transmit and a death sentence.

Any coverage of HIV in 2018 that treats HIV as an automatic death sentence is unscientific and wrong. While it’s true that many people in the global South and even certain regions in the United States might see worse outcomes due to an HIV diagnosis than others, putting the onus on the virus instead of racist socio-economic conditions puts people with HIV at risk. When discussing HIV criminalization, stories too often rely on people’s fear of the virus rather than reality to prove their point.

“It’s easy to disclose your HIV status, so just do it!”

If there’s one thing that HIV criminalization stories prove, it’s that living with HIV in 2018 is a serious risk for personal safety. However, many stories still push the idea that disclosure is the end-all-be-all of living with HIV and that it is the “morally correct” thing to do, even when the story itself is showing the many negative consequences that can come along with HIV disclosure.

These stories also don’t take into the account the pervasive violence and stigma that people living with HIV face daily. As Holas said, these stories revolve around the idea that “if you haven’t done anything wrong, you’ve got nothing to worry about.”  

For those in the media interested in improving their coverage or for advocates looking to make sure their messaging on HIV criminalization is media-ready, the HIV Justice Network does have a guide on HIV criminalization and the media.

 

Published in INTO on July 23, 2018

Beyond Blame symposium highlights intersectionality of issues related to HIV criminalisation at AIDS 2018

Strategies to oppose the unscientific criminalisation of HIV transmission received a high profile at events in advance of the 22nd International AIDS Conference (AIDS 2018) in Amsterdam this week.

These included the launch by the Global Commission on HIV and the Law of a Supplement to its 2012 Report, Risks, Rights & Health, and the HIV Justice Worldwide symposium, Beyond Blame: Challenging HIV Criminalisation.

Read more at aidsmap.com

Livestream: Beyond Blame – Challenging HIV Criminalisation: Rapporteurs and Closing (HJN, 2018)

Welcome to BEYOND BLAME – Challenging HIV Criminalisation, live from De Balie in Amsterdam, 23 July 2018.

15:45 – 16:00 Rapporteur reports from the breakout sessions Lead rapporteur: Sally Cameron (HIV Justice Network)

16:00 – 16:30 Group discussion: Next Steps Facilitators: Naina Khanna (Positive Women’s Network – USA) and Lynette Mabote (ARASA)

Livestream: Beyond Blame – Challenging HIV Criminalisation: Building Bridges Across Movements: Linking HIV Criminalisation With the Criminalisation of Abortion, Drug Use, Gender Expression, Sexuality and Sex Work (HJN, 2018)

Welcome by Luisa Cabal (UNAIDS) Moderator: Susana Fried (CREA and Global Health Justice Partnership) With: Ricki Kgositau (AIDS Accountability International), Oriana López Uribe (BALANCE / RESURJ), Nthabiseng Mokoena (ARASA), Niluka Perera (Youth Voices Count), Jaime Todd-Gher (Amnesty International), Kay Thi Win (Asia Pacific Network of Sex Workers)

Livestream: Beyond Blame – Challenging HIV Criminalisation: Plenary 2 (HJN, 2018)

Welcome to BEYOND BLAME – Challenging HIV Criminalisation, live from De Balie in Amsterdam, 23 July 2018.

11:20 – 12:10 What About Human Rights? The Benefits and Pitfalls of Using Science in Our Advocacy to End HIV Criminalisation Facilitator: Laurel Sprague (UNAIDS) With: Chris Beyrer (John Hopkins Bloomberg School of Public Health), Edwin Cameron (Constitutional Court of South Africa), Richard Elliott (Canadian HIV/AIDS Legal Network), Lynette Mabote (ARASA), Paula Munderi (IAPAC)

12:10 – 13:00 Women and HIV Criminalisation: Feminist Perspectives Facilitator: Naina Khanna (Positive Women’s Network – USA) With: Sarai Chisala-Tempelhoff (Women’s Lawyers Association, Malawi), Michaela Clayton (ARASA), Kristin Dunn (AIDS Saskatoon), Deon Haywood (Women With A Vision)

Livestream: Beyond Blame – Challenging HIV Criminalisation: Opening Plenary (HJN, 2018)

Welcome to BEYOND BLAME – Challenging HIV Criminalisation, live from De Balie in Amsterdam, 23 July 2018.

09:00 – 09:10 Welcome remarks by Edwin J Bernard (HIV Justice Network) on behalf of HIV JUSTICE WORLDWIDE Followed by Laela and Naomi Wilding (The Elizabeth Taylor AIDS Foundation)

09:10 – 09:30 The Lived Experience: What it’s like to be personally impacted by HIV criminalisation and be part of the movement to end it Facilitator: Edwin J Bernard (HIV Justice Network) With: Chad Clarke (Canada), Marama Mullen (New Zealand), Ken Pinkela (United States), Ariel Sabillon (Honduras)

09:30 – 11:00 The Movement to End HIV Criminalisation Globally: Where Are We Now? Presentation by Edwin J Bernard (HIV Justice Network) Followed by panel and Q&A With: Kené Esom (UNDP), Diego Grajalez (CNET+ Belize), Cécile Kazatchkine (Canadian HIV/AIDS Legal Network), Svitlana Moroz (Eurasian Women’s Network on AIDS), Annabel Raw (Southern Africa Litigation Centre), Sean Strub (Sero Project), Omar Syarif (GNP+)

HIV criminalisation high on the agenda at AIDS 2018

Starting today, thousands of activists, scientists, media and others working in the HIV sector will descend upon Amsterdam for the 22nd International AIDS Conference (AIDS 2018).

For those of you able to be in Amsterdam make sure you don’t miss all the amazing HIV criminalisation events taking place before and during the conference.

Download and print this 2-page pdf covering the HIV criminalisation highlights (including pre-conferences, posters and Global Village events) put together by the HIV Justice Network on behalf of HIV JUSTICE WORLDWIDE.

STOP PRESS: For the first time since Edwin Cameron’s call to action at AIDS 2008 in Mexico City, HIV criminalisation is on the agenda during a main morning plenary session, ‘Breaking barriers of inequity in the HIV response’ on Tuesday 24th July.

HIV criminalisation survivor, and Sero Project Assistant Director, Robert Suttle, and KELIN’s Executive Director, Allan Maleche, will speak from 9.30am about, ‘Putting HIV science into the criminal justice system: Impacting lives’.

As well as highlighting the impact of HIV criminalisation on individuals, the session will alert AIDS 2018 delegates to the forthcoming ‘Expert Consensus Statement on the Science of HIV in the Context of Criminal Law’ that will be published on Wednesday 25 July 2018 at 3.15pm in the Journal of the International AIDS Society (JIAS).

The Expert Consensus Statement was authored by a global panel of leading scientists, supported by IAPAC, IAS and UNAIDS in consultation with HIV JUSTICE WORLDWIDE.

It is expected to be a key reference for clarifying important issues of HIV science in the context of criminal law and is aimed at expert witnesses, but likely to be useful for police, prosecutors, lawyers, judges, lawmakers and advocates.

You will be able to find out more about the Expert Consensus Statement, including what it means for HIV criminalisation advocacy, on Wednesday after 3.15pm Amsterdam time, by visiting http://www.hivjusticeworldwide.org where it will be highlighted on the front page.

And of course, we hope to see you at HIV JUSTICE WORLDWIDE’s one day conference this Monday July 23rd, Beyond Blame 2018: Challenging HIV Criminalisation.

Download the Beyond Blame 2018 final programme.

Only a few places remain, so register now if you want to attend. 

Otherwise you can watch the entire meeting live on the HIV JUSTICE WORLDWIDE YouTube channel and Tweet any comments or questions using the hashtag #BeyondBlame2018.

You can also the follow these other HIV criminalisation hashtags:

  • #HIVJUSTICEWORLDWIDE
  • #HIVCrim
  • #HIVIsNotACrime
  • #AIDS2018
  • #BringScienceToJustice