We Are People, Not Clusters! Why public health surveillance using blood taken for HIV resistance testing risks doing more harm than good

by Edwin J Bernard, HJN’s Executive Director

A series of articles and editorials in the October 2020 issue of the American Journal of Bioethics published last Friday examine a growing concern amongst community leaders of people living with HIV and our scholarly allies: the use of blood taken from people living with HIV during routine testing prior to starting or changing antiretroviral therapy in surveillance databases, without our permisssion, for public health purposes. 

This is already taking place across the United States and in some Canadian provinces, and is currently being considered elsewhere in the world.

The rollout of so-called ‘molecular HIV surveillance’ to identify ‘clusters’ of transmissions to attempt to further improve public health responses to HIV is a growing source of anxiety and concern for people living with HIV in the US and Canada, especially for people who are already marginalised and criminalised in other ways, because they can’t be certain that this data won’t be shared with law enforcement or immigration authorities, which can lead to prosecution and/or deportation.

Coming to Facebook Live on 30th September – HIV Justice Live! Whose Blood is it, Anyway?  Like or follow us on Facebook to watch and participate in the first of our new interactive webshows, which will focus on molecular HIV surveillance.

 

In our lead guest editorial, entitled ‘We Are People, Not Clusters!’ which I co-authored with Alexander McClelland, Barb Cardell, Cecilia Chung, Marco Castro-Bojorquez, Martin French, Devin Hursey, Naina Khanna, Brian Minalga, Andrew Spieldenner, and Sean Strub, we support the concept of “HIV data justice” put forth in the lead target article, by Stephen Molldrem and Anthony Smith, Reassessing the Ethics of Molecular HIV Surveillance in the Era of Cluster Detection and Response: Toward HIV Data Justice.

“HIV data justice draws on the collective resources of the HIV/AIDS movement to build new alliances aimed at providing affected individuals and communities with greater control over how their data are utilized in the healthcare system, with the paired aim of providing them with greater access to better services on terms of their own choosing.”
 
Molldrem and Smith

 

In the editorial, we welcome Molldrem and Smith’s critique of the controversial rollout of molecular HIV surveillance (MHS) in the United States, which explores three intersecting concerns:

(1) the non-consensual re-purposing of personal health information and biomaterial for public health surveillance;

(2) the use of molecular HIV surveillance data in larger databases to find ‘clusters’ of infections and to make determinations about transmission directionality, and the criminalising implications that follow such determinations; and

(3) the way MHS amplifies the targeting and stigmatisation of already oppressed and marginalized communities.

The editorial questions the rationale behind the use of MHS as one of four pillars of the US Centres for Disease Control (CDC) End The Epidemic (ETE) Plan and calls for the abolition of molecular HIV surveillance in the United States as it is currently being rolled out by the CDC because it blurs the boundaries between consent and criminalisation.

Instead, we envision a future of new participatory and intersectional racial and viral justice possibilities, one which ensures the lives, voices, self-determination, and autonomy of people living with HIV are central to HIV research and public health practice.

Further reading

Bryn Nelson. Questioning the Benefits of Molecular Surveillance. POZ Magazine, July-August 2020.

South Africa: Libyan embassy allegedly pressuring SA workers to test for HIV

The Department of International Relations and Cooperation (DIRCO) is investigating allegations that South Africans working at the Libyan embassy in Pretoria were pressured to test and reveal their HIV status after asking to be tested for COVID-19.

Several of the affected employees who spoke to Spotlight on the condition of remaining anonymous, have worked for the embassy for over a decade. They say that someone who visited the embassy had tested positive for COVID-19 and that at least one of the embassy’s workers had been exposed to the person who tested positive.

The workers say they asked the embassy to arrange and pay for COVID-19 tests, since the possible exposure happened in the workplace and they could not pay the costs themselves. They say this was at first refused because their employee contracts do not cover such medical expenses. Later the workers were given the option to be tested, if they agree to also test for other conditions, particularly HIV and hepatitis.

One worker says that while he knew that this wasn’t right and tried to push back, he eventually gave in to the idea because he was afraid of getting sick. He says he has a known comorbidity that added to his concern. “Because I was so scared of COVID-19 I said sir, please, let me go test, everything is fine.”

Questions were sent to the Libyan embassy and Spotlight was telephonically informed that the matter would be raised with embassy leadership, but despite being given multiple opportunities over a period of more than a week, the embassy did not respond to our questions by the time of publication. Spotlight has however seen letters and e-mails that appear to confirm at least some of the allegations made by the workers.

DIRCO stated that it could not comment on the situation until their investigations were finalised.

Previous DIRCO involvement

This follows a similar incident in December 2018, when all local employees at the embassy were allegedly instructed to test for HIV, tuberculosis, and hepatitis A, B, and C. At the time DIRCO met with representatives of the embassy to discuss the situation. A subsequent letter from DIRCO (seen by Spotlight) explains that mandatory medical testing is against South African law and the Vienna Convention on Diplomatic Relations of 1961, and urged the embassy to reconsider its position.

One worker describes the reaction by embassy leadership to their request for COVID-19 tests as “if you want to test this, remember you refused to test HIV”. “We’ll include HIV on the list and if you go test, the embassy will pay for you.”

The workers eventually did go for COVID-19 tests, over two weeks after the possible exposure. On the day, some again refused to test for the other conditions, but say they eventually did so after more pressure from the embassy, including alleged threats to fire them.

They also allege that the embassy instructed the testing laboratory to send all the results to the embassy.

Phila Malaza from the Union for the Local Employees in Missions Accredited to South Africa (ULEMASA), says that in addition to DIRCO, the incident has also been reported to the South African Human Rights Commission. A case of unfair labour practices has also been opened at the  Commission for Conciliation Mediation and Arbitration (CCMA) and the union has sent a letter to the Chairperson of Parliament’s Portfolio Committee on International Relations and Cooperation to request an intervention on the matter.

What the law says

There are a variety of local laws and guidelines that protect the confidentiality of certain medical results. The National Health Act says that information relating to one’s health status may not be disclosed unless consented to in writing, ordered by a court or law, or if “non-disclosure of the information represents a serious threat to public health”. Section 7 of the Employment Equity Act restricts medical testing of an employee and prohibits HIV testing unless “determined to be justifiable by the Labour Court”.

Retired Constitutional Court Justice Edwin Cameron, who is a long-time activist for HIV issues, says it is important for individuals to have control over the privacy of results because of stigma. He says that while HIV is entirely medically manageable, there is still a long way to go in changing attitudes. “That is why HIV is still a disease of silence across the African continent – shame, rooted in sexual transmission, and stigma about it.”

Cameron says that HIV results remain private. “Employers have no reason at all to want to know them, unless for beneficent reasons, like a genuine offer to assist employees with HIV to locate counselling and ARV treatment, and to accommodate this in their work duties.”

He explains, however, that some legislation, such as the Employment Equity Act, was in place before the widespread availability of ARV treatment. “There was little reason to test, at that time, other than to try to single out and discriminate against those testing positive.” However, consensual and private testing should now be widely encouraged.

The director of the Centre for Medical Ethics & Law at Stellenbosch University, Professor Keymanthri Moodley, says that the underlying ethical principle is a respect for autonomy, making consent and confidentiality crucial. She says, “with respect to HIV testing, privacy is important because this is personal, sensitive information and because a person’s HIV status could potentially lead to harm, including stigmatisation linked to the disease and death in some cases”.

Moodley explains that there are some medical exceptions, such as in the current pandemic. She says, “COVID-19 is a threat to public health as it is transmitted via the respiratory route”.  “Disclosure is legally permitted because of the public health risk.”

Beyond South African legislation, global sentiment goes against coerced testing. Edwin Bernard, the executive director of the HIV Justice Network, says “mandatory, compulsory or coerced HIV testing of individuals on public health grounds is never acceptable”. He points to a 2017 statement by the World Health Organisation (WHO) and UNAIDS guidelines which insist on consent and confidentiality as crucial in HIV testing services.

“HIV testing, no matter how it is delivered, must always respect personal choice and adhere to ethical and human rights principles,” the statement reads. The only scenarios in which WHO and UNAIDS supports mandatory HIV testing is during medical procedures such as organ transplants and giving of blood destined for transfusions.

Emotional impact

One worker says they repeatedly explained to the diplomats it is against the law. “I don’t know why they want the results, because we’ve been working with them for a long time, even if we are positive, we contracted that disease and have been working with them.”

Another worker says they are scared and being impacted deeply by the situation. “This thing is affecting me too much emotionally, because to be honest, people like me already know their status. I’m already on ARVs, so if they would find out that I’m positive, I think the situation would change.”

Yet another employee says he feels traumatised by the situation. He asks, “if I lose this job, how am I going to support my family?” Beyond the worry of possibly losing his income, he says that he did not like that he was being pressured to take an HIV test, instead of being able to make that choice in his own time.

US: “Institutionalized discrimination gives people a reason to avoid getting tested or having open conversations around the disease”

The HIV Pandemic Is Still Raging—and Won’t Stop Until We End the Stigma

One of the hardest lines I’ve ever had to deliver was, “I’m going to die.” It was the initial response of my character Ricky after being diagnosed with HIV during the height of the epidemic in season two of the 1990s drama POSE.

Ricky, like me, is a young Black queer man. I, the actor, had to contend with how true this statement must have felt for him, because an HIV diagnosis was largely a death sentence in 1990. Today, despite all the advances in science and medicine, as a Southerner, I am more likely than the average American to contract HIV, less likely to receive treatment, and more likely to die from HIV.

Tens of thousands of people are diagnosed every year, and in some states, annual diagnoses are on the rise. This is particularly true in the South, which accounts for 51 percent of HIV diagnoses despite only making up 38 percent of the U.S. population. There is a level of complacency around HIV that troubles me. Most people don’t understand that we’re still in the midst of the HIV epidemic.

It is true that HIV is no longer a death sentence, but fear, misinformation, and shame surrounding the disease remain and make the epidemic harder to contain. Stigma makes it harder to educate people about the disease, and stops people from seeking crucial treatment that saves lives and prevents its spread.

Americans are still seriously misinformed about HIV. The GLAAD and Gilead Science’s ‘State of HIV Stigma’ Survey found that the public’s knowledge of HIV is dangerously inaccurate and that they hold significant feelings of stigma towards people living with the disease. According to their study, only 60 percent of Americans believe that “HIV is a medical condition that can be treated,” despite the fact that drugs treating HIV have been on the market for over a decade. Even more troubling, nearly 6 in 10 Americans wrongfully believe that “it is important to be careful around people living with HIV to avoid catching it.”

Scientists have proven that HIV cannot be passed through healthy, unbroken skin, and people with HIV who take HIV medicine as prescribed and keep an undetectable viral load have virtually no risk of sexually transmitting HIV to their HIV-negative partners. Yet, this is not widely understood by the public and contributes to more people unnecessarily contracting the disease. A study in Toronto, where HIV is criminalized, found that men who had sex with men were less likely to get tested because of the laws, creating an exponential 18.5 percent increase in HIV transmission.

Around the same time Ricky found out he had HIV, I was born in Florida, a state that still criminalizes HIV and uses the law to punish people and perpetuate stigma. Engaging in consensual sex or donating blood or organs without disclosing one’s HIV status is a third-degree felony in the Sunshine State. This could lead to five years in prison and a $5,000 fine. Florida isn’t alone; today 34 states have HIV-specific criminal laws or sentence enhancements that apply to people living with HIV. This kind of institutionalized discrimination gives people a reason to avoid getting tested or having open and honest conversations around the disease.

Thailand: People living with HIV could be charged with killing with intent if they donate blood

HIV sufferers who donate blood can be charged with murder, says police spokesman

The deputy police spokesman stated that those who know they are HIV positive but still donate blood or persuade vulnerable people to donate blood can be charged with the criminal offence of “intent to kill”. 

On August 20, at the Royal Thai Police (Police) Pol. Lt. Colonel Kritsana Phattanacharoen, deputy spokesman for the police, spoke about the case of people who have risky behaviours or are infected with HIV and donate blood, and of people persuading others in a risk group to donate blood. Such behaviours are criminal because people who are at risk or infected with HIV can not donate blood. And if they are infecting others, it would be considered an offense as per criminal law, and they would be charged with killing with intent Since the donors know that they are infected with HIV and then donate, it means that they are aware of spreading infection. The infected person is a direct victim.


พร้อมตั้งข้อหา’เจตนาฆ่า’ ใครรู้ว่าเป็นเอดส์แล้วยังบริจาคเลือด… อ่านต่อที่ 

“พ.ต.อ.กฤษณะ พัฒนเจริญ” รองโฆษกตร. เผย กรณีผู้ที่รู้ว่าตัวเองติดเชื้อ HIV แต่ยังไปบริจาคเลือด หรือไปชักชวนคนกลุ่มเสี่ยงด้วยกันไปบริจาคเลือด มีความผิดทางอาญาข้อหา “เจตนาฆ่า”

มื่อวันที่ 20 ส.ค. ที่สำนักงานตำรวจแห่งชาติ (ตร.) พ.ต.อ.กฤษณะ พัฒนเจริญ รองโฆษกตร. กล่าวถึงกรณีผู้ที่มีพฤติกรรมเสี่ยง หรือติดเชื้อ HIV ไปบริจาคเลือด ว่า หากผู้ที่ไปบริจาคแล้วมาชักชวนให้คนอื่นที่อยู่ในกลุ่มเสี่ยงด้วยกันไปบริจาคเลือด พฤติกรรมดังกล่าวเข้าข่ายความผิด พ.ร.บ.คอมพิวเตอร์ ฐานนำเข้าข้อมูลอันเป็นเท็จ เนื่องจากผู้ที่อยู่ในกลุ่มเสี่ยง หรือติดเชื้อ HIV แล้ว ไม่สามารถบริจาคเลือดได้ และหากทำให้ผู้อื่นติดเชื้อ จะเข้าข่ายความผิดกฎหมายอาญาข้อหาเจตนาฆ่า เนื่องจากผู้ที่บริจาคย่อมรู้แก่ใจว่าตนเองติดเชื้อ HIV แล้วยังไปบริจาคเท่ากับว่าเป็นการเล็งเห็นผลให้เกิดการติดเชื้อเพิ่มมากขึ้น โดยผู้ที่ติดเชื้อจึงเป็นผู้เสียหายโดยตรง.

Canada: Activists deplore media article perpetuating misinformaton and ignoring scientific breakthroughs

Fuelling myths about HIV in the age of misinformation

Automatic translation from Deepl.com, for original article in French, please scroll down.

We have read two articles written by Hélène Buzzetti and published on August 1st, 2020. In a context where scientific advances surrounding HIV are struggling to make their way in the media, we are dismayed that the journalist has chosen to perpetuate outdated myths and realities about HIV.

The article “HIV-AIDS: A dangerous desire” looks at the desire to voluntarily transmit or contract HIV. This practice, although it may have existed only marginally in the past, is essentially a myth today. However, the article succeeds in presenting this phenomenon as a current and common practice, and in portraying people living with HIV as potential vectors of transmission. While the article contains a few quotes and excerpts from interviews, these are devoid of the nuances that should have accompanied them.

We know that today a person living with HIV on effective treatment does not transmit the virus to his or her sexual partners. An overwhelming majority of gay men living with HIV who know their status are on antiretroviral therapy, which reduces the viral load to such an extent that sexual transmission of the virus is impossible. Yet the journalist kept this scientific breakthrough, which unfortunately remains unrecognized, quiet and devoted an entire article to a marginal phenomenon that fosters mistrust of people living with HIV.

The box at the bottom of the article does nothing to correct this. Without any obvious connection to the subject of the article, it discusses the state of the law surrounding the criminalization of HIV non-disclosure, ignoring the fact that many changes have taken place since the Mabior decision.

Stigma

While it is true – and regrettable – that no directive to prosecutors has yet been adopted in Quebec on this issue, we know that the justice stakeholders concerned, including the DPCP and the Department of Justice, agree with certain advances. These are summarized by the INSPQ in its publication Obligation de divulguer son statut sérologique à ses partenaires sexuels? The criminal justice system is evolving from June 2019.

Among other things, it should be noted that the criterion of realistic possibility of transmission is not met (and that prosecutions should not be initiated) when a person living with HIV is on antiretroviral treatment as prescribed and his or her viral load, measured every four to six months, is less than 200 copies/ml.

The question then arises: what was the point of publishing this exposé of a phenomenon that does not exist, or exists only to a limited extent, while at the same time fuelling the stigma that people living with HIV continue to experience?

We could say that writing about advances in prevention would have been preferable. Certainly, this was done in the article “More popular but cheaper PrEP”. Unfortunately, what should have been presented as good news, the growing popularity of an effective and affordable HIV prevention tool, was instead presented as an expensive tool that feeds irresponsibility. The potential of pre-exposure prophylaxis (PrEP) in the fight against the HIV epidemic has been completely obscured.

The first point to be made is that PrEP is not only for gay men. The PrEP guidelines, which are easily accessible on the website of the Ministère de la Santé et des Services sociaux, confirm that PrEP is recommended for various populations. Additional research has also reportedly shown that the increase in sexually transmitted and blood-borne infections (STBBIs) began long before PrEP was available in Quebec.

Benefits

If the people who use PrEP are those with other STBBIs-which is not supported by any data in the article-wouldn’t that be a sign that PrEP is finding its target audience, which is people who are taking risks? Wouldn’t this be a sign that the recommended medical follow-up of PrEP users is effective in identifying and treating these infections and stopping their spread? Unfortunately, the article does not mention these benefits.

In conclusion, it should be added that these stigmatizing articles appear in the context of COVID-19, where rumours and conspiracy theories are spreading like wildfire. HIV is no exception. Denialist videos are circulating and gaining popularity, prompting some people to stop their antiretroviral treatment. The spread of such ideas, which are false and contrary to science, is dangerous. As is the misrepresentation and bias of certain realities surrounding HIV and its prevention.

Millions of infections were prevented and lives were saved thanks to scientific advances and research into HIV, its treatment and prevention. It is unfortunate that the journalist did not take the opportunity to highlight these advances. If there is ever a time when the media should clearly stand up as an ally of science and strive to combat misinformation and misinformation, this is it.

*Ken Monteith, Director General, COCQ-SIDA
François-Xavier Schmitz-Lacroix, Co-Director General, MIELS-Québec
Marc-Anciel Gaudette, Project Manager – Collectif Avancer, MIELS-Québec
Léa Pelletier-Marcotte, Lawyer, COCQ-SIDA
Laurent Trépanier Capistran, Lawyer, COCQ-SIDA


Alimenter les mythes sur le VIH à l’ère de la désinformation

Nous avons pris connaissance de deux articles rédigés par Hélène Buzzetti et publiés le 1er août 2020. Dans un contexte où les avancées scientifiques entourant le VIH peinent à se faire une place dans les médias, nous sommes consternés que la journaliste ait choisi de perpétuer des mythes et des réalités dépassées sur le VIH.

L’article « VIH-sida : un désir dangereux » se penche sur le désir de transmettre ou de contracter volontairement le VIH. Cette pratique, bien qu’elle ait pu exister de manière marginale par le passé, relève essentiellement du mythe de nos jours. L’article réussit cependant à présenter ce phénomène comme étant une pratique actuelle et courante, et à dépeindre les personnes vivant avec le VIH comme vecteurs de transmission en puissance. Si l’article contient quelques citations et extraits d’entrevues, ceux-ci sont dénués des nuances qui auraient dû les accompagner.

Nous savons qu’aujourd’hui une personne vivant avec le VIH sous traitement efficace ne transmet pas le virus à ses partenaires sexuels. Une très grande majorité d’hommes gais vivant avec le VIH et qui connaissent leur statut suivent un traitement antirétroviral, lequel permet de réduire la charge virale à un point tel que la transmission sexuelle du virus est impossible. Pourtant, la journaliste tait cette avancée scientifique, qui demeure malheureusement méconnue, et consacre un article entier sur un phénomène marginal qui alimente la méfiance à l’égard des personnes vivant avec le VIH.

L’encadré au bas de l’article ne fait rien pour corriger cela. Sans lien manifeste avec le propos de l’article, on y aborde l’état du droit entourant la criminalisation de la non-divulgation du VIH, en occultant que plusieurs changements ont eu lieu depuis l’arrêt Mabior.

Stigmatisation

Bien qu’il soit vrai — et regrettable — qu’aucune directive aux procureurs n’a encore été adoptée au Québec sur la question, nous savons que les acteurs de la justice concernés, incluant le DPCP et le ministère de la Justice, souscrivent à certaines avancées. Celles-ci sont notamment résumées par l’INSPQ dans sa publication Obligation de divulguer son statut sérologique à ses partenaires sexuels ? Le système de justice pénale évolue de juin 2019.

On notera, entre autres, que le critère de la possibilité réaliste de transmission n’est pas rempli (et que des poursuites ne devraient pas être intentées) lorsqu’une personne vivant avec le VIH suit un traitement antirétroviral tel que prescrit et que sa charge virale, mesurée tous les quatre à six mois, est inférieure à 200 copies/ml.

Une question se pose donc : quel était l’intérêt de publier cet exposé d’un phénomène qui n’existe pas, ou si peu, tout en alimentant la stigmatisation que vivent toujours les personnes vivant avec le VIH ?

Nous pourrions dire que d’écrire sur les avancées en matière de prévention aurait été préférable. Certes, ce fut fait dans l’article « Une PrEP plus populaire, mais moins chère ». Malheureusement, ce qui aurait dû être présenté comme une bonne nouvelle, soit la popularité grandissante d’un outil de prévention du VIH efficace et abordable, a plutôt été présenté comme un instrument dispendieux qui alimente l’irresponsabilité. Le potentiel de la prophylaxie préexposition (PrEP) dans la lutte contre l’épidémie de VIH y a été complètement occulté.

Une première précision s’impose: la PrEP n’est pas réservée aux hommes gais. Les lignes directrices sur la PrEP, facilement accessibles sur le site du ministère de la Santé et des Services sociaux, confirment que celle-ci est recommandée pour diverses populations. Une recherche supplémentaire aurait également montré que la hausse d’infections transmises sexuellement ou par le sang (ITSS) a commencé bien avant que la PrEP soit disponible au Québec.

Bienfaits

Si les personnes qui utilisent la PrEP sont celles qui présentent d’autres ITSS — ce qui n’est appuyé par aucune donnée dans l’article — ne serait-ce pas plutôt signe que la PrEP trouve son public cible, c’est-à-dire les personnes qui prennent des risques ? Ne serait-ce pas signe que le suivi médical recommandé des utilisateurs de la PrEP permet d’efficacement identifier et traiter ces infections et d’en arrêter la propagation ? L’article passe malheureusement sous silence ces bienfaits.

Pour conclure, il faut ajouter que ces articles stigmatisants apparaissent dans le contexte de la COVID-19, où rumeurs et théories du complot se propagent comme une traînée de poudre. Le VIH ne fait pas exception. Des vidéos négationnistes circulent et gagnent en popularité, poussant certaines personnes à cesser leur traitement antirétroviral. La propagation de telles idées, mensongères et contraires à la science, est dangereuse. Tout comme l’est la représentation erronée et biaisée de certaines réalités entourant le VIH et sa prévention.

Des millions d’infections furent prévenues et des vies furent sauvées grâce aux progrès scientifiques et à la recherche sur le VIH, son traitement et sa prévention. Il est regrettable que la journaliste n’ait pas saisi l’occasion de mettre en lumière ces avancées. Or, s’il y a bien un moment où les médias devraient clairement s’inscrire comme alliés de la science et s’efforcer de lutter contre la désinformation et la mésinformation, c’est celui-ci.

*Ken Monteith, Directeur général, COCQ-SIDA
François-Xavier Schmitz-Lacroix, Codirecteur général, MIELS-Québec
Marc-Anciel Gaudette, Chargé.e de projet — Collectif Avancer, MIELS-Québec
Léa Pelletier-Marcotte, Avocate, COCQ-SIDA
Laurent Trépanier Capistran, Avocat, COCQ-SIDA

Watch all the videos of Beyond Blame @HIV2020 – our “perfectly executed…deftly curated, deeply informative” webshow

Earlier this month, advocates from all over the world came together for two hours to discuss the successes and challenges of the global movement to end HIV criminalisation.

All of the recordings of Beyond Blame: Challenging HIV Criminalisation for HIV JUSTICE WORLDWIDE are now available on the HIV Justice Network’s YouTube Channel.

“HUGE pleasure 2B at #BeyondBlame2020 conference – deftly curated, deeply informative; speakers were great; the passion & commitment to #HIVjustice was palpable. Much progress yet a sober reminder that the work is far from over.”

Kene Esom, Policy Specialist: Human Rights, Law and Gender, United Nations Development Programme (UNDP)

 

The full-length director’s cut version – with enhanced audio and video – is now available in English as well as with the audio track of the recorded simultaneous translation in French, Spanish, Russian, and Portuguese.

The English version is also available as a YouTube playlist in ‘bite-size’ chunks, with each segment of the webshow available as standalone videos.  This means, for example, if you just want to watch (or share) the segment on ‘women challenging HIV criminalisation in Africa‘, or on ‘bringing science to justice, and justice to science‘, it’s now possible.

“That webinar was perfectly executed. Great sound, engaging transitions (they actually played people on and off!), and multiple speakers in various collections. Having ALL OF THEM back at the end showed the breadth of this technical accomplishment and the depth of the speakers’ field of expertise. Not everyone may notice these things but boy, I sure do, and it was totally pro. I’ve seen big name conferences who couldn’t get this right… Congratulations all around, and especially to [director] Nicholas Feustel.

Mark S King, My Fabulous Disease

 

We have also made available for the first time the standalone recording of Edwin Cameron’s closing speech, which inspired so many.  The transcript is included in full below.

“We have been being battling this fight for many years. Since the start of the HIV epidemic we as gay men, as gay women, as queers, as transgender people, as sex workers, as people using drugs, have been persecuted by the criminal law. And I’m here to say, “Enough! Enough!

We have achieved a great deal with our movement, with the HIV Justice Network. We have achieved a great deal in conscientizing law makers, law givers and the public. It is now time for us to join in unison to demand the end of these stigmatising, retrograde, unproductive, hurtful, harmful laws.

It is a long struggle we’ve engaged in. And it’s one that has hurt many of us. Some of us here today, some of us listening in, some of us who have spoken, have felt the most brutal brush of the law. They have been imprisoned, unjustly prosecuted, unjustly convicted, and unjustly sent away.

HIV is not a crime. But there is more to it. Criminalising HIV, criminalising the transmission or exposure of HIV, as many countries on my own beautiful continent Africa do, is not just stupid and retrograde. It impedes the most important message of the HIV epidemic now, which is that this epidemic is manageable. I’ve been on antiretroviral treatment now for very nearly 23 years. My viral load has been undetectable for more than 20.

We can beat this, but we have to approach this issue as public health issue. We have to approach it rationally and sensibly, and without stigma, and without targeting people, and without seeking to hurt and marginalise people.We’ve made calamitous mistakes with the misapplication of the criminal law over the last hundred years, in the so-called ‘war on drugs’. We continue to make a calamitous mistake in Africa and elsewhere by misusing the criminal law against queer people like myself. We make a huge mistake by misusing the criminal law against people with HIV.

Let us rise today and say, “Enough!”

 

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.

 

US: Activists activists raise concerns over the links between public health & law enforcement surveillance

Questioning the Benefits of Molecular Surveillance

Can this HIV prevention strategy overcome mistrust and fear among marginalized communities?

In Texas, health officials recently used a new surveillance technology to identify a large HIV outbreak among gay and bisexual Latino men. In Massachusetts, officials used the same strategy to respond to an outbreak among injection drug users. And in California, researchers used the method to identify a transmission cluster among transgender women.

Led by initial proof-of-principle research at the Centers for Disease Control and Prevention (CDC), an HIV prevention strategy known as molecular surveillance is quickly expanding across the country. Since December 2015, according to an email from a CDC source who commented on background, the technique, based on sequencing and comparing individuals’ viral genetic blueprints, has identified more than 240 recent and rapidly growing HIV transmission clusters, the vast majority of which had not previously been recognized. Comparing these sequences allows researchers to determine whether individuals’ HIV is closely related, which offers clues about who transmitted the virus to whom. 

Traditional public health methods—now being used to trace the spread of COVID-19, the disease caused by the new SARS-CoV-2 coronavirus—largely rely on asking people about their contacts and getting in touch with them by phone or in person. The CDC source said molecular data analysis allows for more rapid and comprehensive cluster and outbreak detection and response. As such, molecular surveillance is seen by the agency as a key part of effective HIV prevention and a means to help hard-hit communities and the nation end the HIV epidemic.

Those idealized goals, however, are clashing with a far messier reality in which decades of mistrust and fear among marginalized communities, heightened in the current political climate, are coming to a head. The tech-aided HIV surveillance strategy, six activists told POZ, could open up new avenues for private data to be breached, exploited, subpoenaed or otherwise released through many of the HIV criminalization laws and statutes still on the books in 34 states.

Activists say the CDC-led molecular surveillance effort was launched with little or no consultation or buy-in from the communities most likely to be impacted. Several meetings ensued, including one convened in 2018 by the O’Neill Institute for National & Global Health Law at Georgetown Law School in Washington, DC, that allowed critics to air some of their concerns. Despite a subsequent round of CDC guidelines on how best to safeguard patient data, however, the controversy has only grown over the potential misuse and unintended consequences of the surveillance scheme.

Patients can’t opt out of providing their viral sequence data for the molecular tracking, critics point out. Nor does the strategy adequately consider the state-by-state patchwork of protections and penalties or the growing health implications of an erosion of immigrant, minority and LGBTQ rights, they say.

Sean Strub, POZ’s founder and the executive director of the nonprofit Sero Project, which focuses on reforming HIV criminalization laws, says he fears the CDC-led strategy will diminish trust and cooperation with public health agencies and drive more vulnerable people further from the health care system out of fear of surveillance. “I think the risk of unintended consequences is very great,” he says.

Strub and other activists see molecular surveillance as part of a broader trend in the “securitization of disease,” which is increasingly blurring the lines between the public health and criminal justice systems.

“We are potentially threatening people’s freedom just to get cleaner data, and I think it’s a clear ethical concern,” says Devin Hursey, a member of the Missouri HIV Justice Coalition and a board member of Blaq Out, a nonprofit advocacy group for Black queer and transgender people in the Kansas City region. “We can’t just look the other way or say we’re doing our best effort when we’re not really addressing that HIV criminalization still exists.”

The CDC source told POZ that the agency understands and has addressed many of the questions and concerns raised by community advocates. The CDC has strong data protections and security measures in place, the source said, and has worked for many years to provide guidance to states on reviewing and revising criminalization laws and ensuring data are well protected.

But Naina Khanna, executive director of Positive Women’s Network–USA, says the CDC hasn’t responded to specific questions about its data-sharing practices with other federal agencies, like the Department of Homeland Security and Immigration and Customs Enforcement (ICE). Khanna points out that the communities most impacted by HIV are also disproportionately affected by surveillance, policing and criminalization. “That’s extremely concerning when we think about how policing intersects with being a Black gay man or being a Latino gay man,” she says. In response, the CDC source told POZ that all HIV surveillance data are reported to the agency without names or any personal identifiers and are encrypted and protected by an Assurance of Confidentiality under Section 308(d) of the federal Public Health Service Act.

A New Surveillance Tool

When someone tests positive for HIV in the United States, a blood draw allows labs to sequence part of the viral genome, or its genetic blueprint, and use that to determine whether the virus contains mutations that might lead to drug resistance. This information can help doctors tailor the best HIV treatment regimen for each individual. But once the genetic sequencing is complete, health departments can access that data for molecular HIV surveillance. Specifically, they compare viral RNA sequences from multiple individuals to identify clusters of transmission. This is possible because HIV mutates over time; as a result, people with similar genetic sequences are more likely to have been infected around the same time as part of the same person-to-person chain of viral transmission.

Randy Mayer, MS, MPH, chief of the Bureau of HIV, STD and Hepatitis at the Iowa Department of Public Health, says the HIV resistance tests sent in by doctors around the state essentially provide his department with free surveillance data. “It’s something that we can use to try to improve our response that doesn’t really cost us anything,” Mayer says. “So from that point of view, it is cost effective.”

If a state-run computer program finds two or more individuals who share closely related viral sequences, it suggests that HIV might have passed between them or through a close intermediary. Spotting such clusters of transmission could help public health officials identify HIV-positive individuals and their close sexual or needle-sharing partners.

The surveillance approach has multiple potential benefits, researchers say. “This is just one more strategy in the toolbox of surveillance tools used to guide public practice,” says Nanette Benbow, MAS, research assistant professor of psychiatry and behavioral sciences at Northwestern University Feinberg School of Medicine in Chicago. HIV transmission clusters identified through this method, she says, may represent only the “tip of the iceberg” of at-risk individuals, since the genetic information is available only for HIV-positive people who’ve been to a doctor and received drug resistance testing. Through contact tracing, though, public health officials can find other people associated with the cluster, contact them and offer them a range of care or prevention services, like pre-exposure prophylaxis (PrEP), if they’re not already receiving them.

Benbow says evidence suggests that the rate of HIV transmission within such clusters is much higher than that of transmissions overall, bolstering the case that public health agencies should focus on these clusters as significant sources of active viral transmission.

Some public health experts say the growth of surveillance is inevitable. “You’re not going to stop technology. All you can do is try to get it implemented in an ethical manner,” says Eve Mokotoff, MPH, managing director of HIV Counts, a consulting business based in Ann Arbor, Michigan, that assists with HIV surveillance.

Andrew Spieldenner, PhD, vice chair of the U.S. People Living with HIV Caucus and an assistant professor of communications at California State University San Marcos, rejects that argument. “Just because technology exists doesn’t mean we have to use it,” Spieldenner says. “We have to balance it with the harms it does to individuals.”

Newer technology that could extend molecular HIV surveillance is giving activists more pause. One method, called ultra-deep whole-genome next-generation sequencing, isn’t yet part of the CDC strategy. But emerging study data suggest that it could predict the directionality of linked HIV transmissions, potentially adding new evidence to suggest who infected whom. Researchers at Johns Hopkins University School of Medicine, in fact, recently described how they correctly predicted HIV transmission from an index case to a sexual partner in more than 90% of 105 sample pairs. The direction couldn’t be established in the remaining cases, but the method didn’t incorrectly predict any transmissions.

Other research the CDC is pursuing may help estimate the recency of an infection, meaning whether one person acquired HIV more recently than another. Together, the data could enable additional predictions about when and how HIV infections occurred within transmission clusters. Benbow says the data on their own don’t prove direct transmission, since another individual could have been an intermediary in the chain, but Khanna points out that judges and juries wouldn’t necessarily take these scientific caveats into account. “We see a lot of potential for opening the door to criminalization,” she says.

Despite privacy assurances, Strub maintains that data collected for one purpose is being unethically used for another without patient consent. “It’s not being used evenly across the society. Molecular surveillance focuses on the communities that are already highly marginalized, communities where there is the greatest risk of serious, harmful consequences,” he says. “People of privilege don’t see this.”

In a 2019 letter in the journal Lancet, researchers at the University of California, San Diego responded to criticism of their molecular surveillance study of an HIV transmission cluster involving transgender women by questioning whether informed consent is “imperative” for such analyses. “Surveillance for numerous infectious agents, including HIV, is done ethically and without consent. The public good of HIV surveillance justifies this approach,” they wrote. “Requiring consent for surveillance reporting would preclude a robust understanding of disease distribution and spread and the ensuing benefit to the health of individuals and communities.”

Alexander McClelland, PhD, a postdoctoral researcher in the Department of Criminology at the University of Ottawa, says such arguments reflect the logic that people living with HIV are an “object of risk” to be managed by public health. “We’re not considered to be people who have autonomy or rights to privacy or security of our own lives and our own bodies and our own data,” he says.

Many defenses of molecular surveillance, McClelland adds, also overlook other implications beyond the “broader public good” of repurposing patient data for public health surveillance. Among them, he says, are the criminalization, uncertainty and fear of people who are living with HIV and subject to continual privacy breaches. “People love to say, ‘We’re looking at molecules not people.’ But those molecules are connected to people, and those people are in the social world,” McClelland says, “and you can’t evacuate a virus from the social context that it’s in.”

A Climate of Fear

According to the Center for HIV Law & Policy in New York City, 34 states have enacted some form of HIV criminalization law or sentencing enhancement for other crimes allegedly committed by a person living with HIV. Although the language varies, 21 states have laws under which HIV-positive people who are aware of their status but don’t disclose it to sexual partners can be prosecuted (additional states have prosecuted nondisclosure under different laws); 12 states require the same disclosure among people who share needles. Some laws cover alleged HIV exposure while others cover actual transmission. Between 2009 and 2019, 24 states also prosecuted people living with HIV under other criminal statutes.

The interpretations and enforcement of laws can vary widely as well. In an April 2020 report, the Williams Institute at the UCLA School of Law documented 209 arrests and 107 convictions under Missouri’s HIV criminalization laws between 1990 and 2009. The report noted that the crimes appeared to be disproportionately enforced in St. Louis and adjacent St. Louis County. Although Black men account for 5.5% of Missouri’s population and 35% of people living with HIV, the report found, they accounted for more than half of HIV crime arrests and convictions over the 20-year period.

“We’re oftentimes targeted by not just HIV laws but by a lot of other different laws. We’re more likely to experience surveillance by law enforcement,” Hursey says of Black men. Layering on the element of molecular surveillance, he adds, only compounds the fear and lack of trust in public health and discourages the honest answers and cooperation necessary for HIV peer educators like him to do their jobs effectively. That mistrust is heightened by the legal requirement that Missouri’s health department must turn over all surveillance data to prosecutors pursuing an HIV criminalization case, he says.

“We have an epidemic of criminalization of people living with HIV, and you can only be prosecuted or convicted if you know your HIV status,” Khanna says. If people already feel marginalized and stigmatized, she and Hursey say, the added threat of criminalization based on knowing their HIV status can deter them from ever seeking out testing or care—the very opposite of stated public health goals.

Marco Castro-Bojorquez, cochair of the HIV Racial Justice Now project, says molecular HIV surveillance could likewise put undocumented immigrants at risk, especially since their existence in the United States is already criminalized. “It’s problematic, and it breaks my heart because a lot of people that could be very affected are those that are so fearful of the government and don’t really know that it’s happening,” he says.

Across the border from Missouri, Mayer says public health data are “well protected” in Iowa. They weren’t always, but in 2014, Iowa reformed its HIV criminalization law. The updated statute, Mayer says, requires proof that an HIV-positive person was negligent in exposing a partner to the virus and prohibits molecular surveillance data gathered by the state health department from being used to prosecute anyone. “I had some upset prosecutors who have tried to come to me, with subpoenas, to get information, which we don’t allow,” he says. Prosecutors can gather the data from other sources, but the health department has largely cut its tether to law enforcement.

Even so, prosecutors have found other mechanisms to gather data and enforce Iowa’s HIV criminalization law. In May, a 33-year-old Black man was sentenced to 26 years for “knowingly” exposing three women and a minor to HIV and transmitting the virus to three of them.

Activists say public health agencies also cannot divorce their molecular surveillance plans, however well intentioned, from the current rollback of LGBTQ, immigrant and minority rights. Castro-Bojorquez says the Trump administration’s anti-immigrant rhetoric and policies have not only eroded the Latino community’s trust in public officials but also worsened health outcomes. “Those attacks,” he says, “and the promotion of hatred, rolling back the few rights that we had and we fought so hard for, they have an impact, and people die.”

Numerous undocumented immigrants held in crowded detention centers have contracted COVID-19, and some deported immigrants have brought the coronavirus back to Guatemala, Mexico and other countries. Fear of HIV criminalization or deportation, Castro-Bojorquez says, has led other immigrants to avoid or delay “official” activities, including HIV testing and treatment. “Late diagnosis is a major issue in our communities,” he says, adding that it’s a big contributor to higher mortality rates among Latino men.

***

Finding Common Ground

Amid the ongoing controversy, HIV activists and public health officials may be finding common ground on the need for more community engagement and on the importance of decoupling public health and law enforcement. In a 2019 commentary in the American Journal of Public Health, Benbow joined other AIDS researchers, bioethicists and a representative of the National Alliance of State and Territorial AIDS Directors (NASTAD) in explaining how multiple aspects of existing HIV criminalization laws could confound public health goals around molecular surveillance.

Benbow and her coauthors cautioned that using identified surveillance data against the interest of patients, especially without informing them, “could jeopardize community confidence in public health agencies.” The authors also noted the CDC’s requirement that funded health departments create plans to address gaps in data protection and consider eliminating or modifying potentially counterproductive laws. “In light of the considerations we have addressed, health department leaders should consider supporting statutes that expressly limit, or even prohibit entirely, release of surveillance data for law enforcement purposes,” they wrote.

Mokotoff cautions that a health department can’t always change its state law. “But the health department can work with the community to help them understand what needs to be done and what kind of wording might be helpful,” she says. “We have to stop allowing surveillance data to be used for prosecution of people who are sick or infected.” Protecting that data from being used in law enforcement, she adds, “would change the entire discussion” with stakeholders in the HIV-positive community.

The CDC itself has avoided criticizing specific state laws, though the agency source told POZ that the CDC has worked with partners like NASTAD to review the range of legal protections, policies and procedures that can help protect HIV data. The source noted that in 2014, the Department of Justice recommended that states either reform their laws to eliminate HIV-specific criminal penalties or modernize their laws to reflect current scientific evidence. The source also pointed out that the Department of Health and Human Services 2019 initiative, “Ending the HIV Epidemic: A Plan for America,” encourages states to take similar steps to help reduce stigma.

Benbow conceded that addressing the intense mistrust of underserved individuals who may need HIV prevention or treatment services the most, including people who inject drugs and undocumented immigrants, remains a steep challenge. But identifying clusters, she says, could help health officials make the case for targeted services that benefit underserved people, like the legalization of needle exchange programs.

“A lot of what we do in public health infringes on privacy, and what we’re trying to do is balance a person’s individual freedoms and liberties and privacy with trying to improve public health and work for the common good,” Mayer says. “You really have to think very carefully about that because if you push that too far, then you’re likely to get a lot of public health interventions rolled back, and people don’t want to work with you. They don’t trust you.” And as the history of HIV shows, regaining lost trust can take decades.

New date for Beyond Blame: Challenging Criminalisation for HIV JUSTICE WORLDWIDE @ HIV2020 Online

New date – Wednesday 8 July 2020

Registration for Beyond Blame at HIV2020 Online now open

Last September, the nine organisations comprising the HIV JUSTICE WORLDWIDE Steering Committee announced that we had unanimously agreed to support HIV2020, and that Beyond Blame, our flagship meeting for activists, advocates, judges, lawyers, scientists, healthcare professionals and researchers working to end HIV criminalisation, would be integrated into the HIV2020 programme.

Now that the HIV2020 conference has been reimagined as a series of virtual convenings that will take place between July and October, we are delighted to announce that Beyond Blame: Challenging Criminalisation for HIV JUSTICE WORLDWIDE has been selected by the HIV2020 programme committee to take place on Wednesday 8 July 2020, from 3pm-5pm Central European Time.  See the time in your time zone here.

This year, the online version of Beyond Blame is a unique opportunity for both new and long-established activists to learn why HIV criminalisation matters, as well as hear about the wide range of initiatives and strategies that have been used by activists around the world to end the inappropriate use of criminal law to regulate and punish people living with HIV.

The first part of this interactive web show will be hosted by HJN’s Executive Director, Edwin J Bernard, and features interviews with various members of the HIV JUSTICE WORLDWIDE Steering Committee, as well as members of the HIV Justice Network’s Global Advisory Panel (GAP).

The second part of the session is an interactive Q&A, hosted by PWN-USA’s Naina Khanna. Throughout the session attendees will be further engaged with polls, video clips, and a surprise guest.

By the end of the session, attendees will be equipped with a greater understanding of the importance of HIV criminalisation, knowledge of strategies used for advocacy, and a set of follow-up actions.

Register now at HIV2020 Online

Programme (subject to change)

Welcome to Beyond Blame 2020

Edwin J Bernard (HJN)

“Nothing about us without us”

Sean Strub (Sero)

Women challenging HIV criminalisation in Africa

Michaela Clayton (GAP) and Sarai Chisala-Tempelhoff (GAP)

The impact of HIV criminalisation on women and people who use drugs in EECA

Alexandra ‘Sasha’ Volgina (GNP+) and Svitlana ‘Sveta’ Moroz (Eurasian Women’s Network on AIDS / ICW)

Building networks to challenge criminalisation in Mexico and across Francophone Africa

Gonzalo Aburto (Sero) and Cécile Kazatchkine (Canadian HIV/AIDS Legal Network)

HIV criminalisation and key populations: who gets prosecuted, where, and why?

Cecilia Chung (Transgender Law Center / GAP), Jules Kim (Scarlet Alliance / GAP) and Elie Ballan (M-Coalition / GAP)

Bringing science to justice, and justice to science

Sally Cameron (HJN) and Alexander McClelland (GAP)

Interactive Q&A

Naina Khanna (PWN-USA) with Paul Kidd (HJN Supervisory Board)

Closing message

Edwin Cameron (former South African Constitutional Court Justice / GAP)

All virtual sessions offered as part of the HIV2020 Online series will be entirely FREE and made available later as recordings online. The webinar will be in English, but HIV2020 will provide simultaneous translation in Spanish, Portuguese, French, and Russian.

Previous Beyond Blame meetings were held in Melbourne (2014)Durban (2016), and Amsterdam (2018).

In Amsterdam, more than 150 attendees from 33 countries attended the one-day meeting. Participation was extended to a global audience through livestreaming of the meeting on the HIV JUSTICE WORLDWIDE YouTube Channel.