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.

US: Interview with JoAnn Wypijewski on the Nushawn Williams’s case, a “signpost on the road to the criminalization of HIV”

Where Do Sex Panics Come From?

An Interview with JoAnn Wypijewski 

Sex panics keep happening because they tap into Americans’ deepest fears about the need to protect innocents from the threat of evil — fears that are endemic among the Left as well as the Right. Meanwhile, lives are destroyed in the process.

JoAnn Wypijewski’s new book, What We Don’t Talk About When We Talk About #MeToo: Essays on Sex, Authority and the Mess of Life, is a collection of her writing over several decades about sex, class, and liberation – and what we all lose when we surrender to moral panic. In the book, she explores and complicates narratives surrounding AIDS, the “pedophile priest” scandals that have plagued the Catholic church, #MeToo, and many others.

What is a sex panic?

JW – It’s a social eruption fanned by the media and characterized by alarm over innocence imperiled. That innocence, historically and stereotypically, has belonged to white women and children. The sex panic always involves some form of bad actor. Usually the bad man, the predator, is a lurking, mutable, social presence, a menace against which the population can be mobilized. Anthropologist Roger Lancaster calls this a “poisoned solidarity.” You can go back to Birth of a Nation. You can go back to the white slavery panic of the 1880s. Or a more modern period: the 1950s, where the Red Scare was a form of moral panic, and there was a “lavender panic” at the same time.
 
“Superpredators,” the priests scandal, the Satanic panic — all have featured a tremendous amount of media attention and repetition of a storyline that cannot be questioned: a narrative of good versus evil where the evil one is out there doing something to the good, and the evil authorizes all the bad that the good can do.Anything can be done to the bad man. And those doing it can feel a tremendous sense of vindication and social validation. That has accomplished something very practical: it has helped to build the prison state. According to a terrific book called The War on Sex, sex crimes are the fastest-growing cause of people being imprisoned. As leftists, we have to be concerned about that. But it’s also culturally developed a turn of mind that there are some people against whom anything is justified.
 
LF – Let’s talk about one of those people. Tell us about Nushawn Williams.
 
JW – Nushawn Williams was a young man from Brooklyn in the 1990s who was a petty drug dealer involved in various criminal activities, who, along with a number of other young people at the time, went upstate to sell drugs and to have what would be probably a better life. He went to the town of Jamestown, about seventy miles southeast of Buffalo, where I grew up. He was very popular with women and very successful as an entrepreneur. He was arrested at one point and tested for HIV, and he was told he was HIV-positive.
Perhaps he didn’t believe it or was in denial — we don’t know — but he continued to have sex with young women. A bunch of them turned up HIV-positive, and the state did something it had never done before. It took his mugshot and put it on a poster that said, “Public health threat, warning, warning, danger. If you’ve had sex with this man, come down immediately for a test.” And then it counseled those looking at this poster that their identity would be completely confidential. Of course, they had just busted his confidentiality! But the fact is that Williams did everything that the state wanted. When he was told he was HIV-positive, they asked him, “Who did you have sex with?” He gave them all the names.
 
LF – There’s a contemporary resonance here. As we’re rediscovering now with COVID-19, contact tracing is hard because people often do not cooperate with the authorities to the extent that he did. Nushawn Williams was a model participant in this process.
 
JW – He was a model participant!
This case was a signpost on the road to the criminalization of HIV, a blaring alarm: “There is an HIV predator among you.” He was on the cover of all the tabloids and the New York Times, and on CNN and in the world press.And all the stories were the same. He was a “lethal Lothario.” He was the devil himself. He was a monster, he was a demon, he was an HIV predator, and this was just declared. These young women were all interviewed. They’d said a variety of things which came down to, “I thought I was in love. He gave me gifts. I thought he would be around. I’m so sad and broken now.” And that was pretty much the story, except for one woman who said, “I don’t know, I won’t join in on this. I loved him once. I’m not going to demonize him.” This woman was eighteen years old.I thought, “She’s the one I want to talk to.” And I met her in jail. She was in jail for breaking probation. And then I met some other people who either had been with him or had been in the same world as he was, and I explored that.The whole town was suddenly embracing young women who it never had any interest in, at all. They were “trash.” I mean, I would not call them that, but that’s how they were perceived. But suddenly they were the flower of Jamestown. Suddenly they were innocent girls who had been defiled by this awful monster, this animal, this predator. And suddenly they were humanized. They were humanized as victims.Some had no way of certainly knowing [that they got the virus from Williams]. And the authorities were completely uninterested in how he may have contracted the virus.I always think of every story I do as a class story. That’s my background. Before I started writing about sex, I was mostly writing about labor and class and unions and union politics, but always, I was interested in the people involved and their particularities. I couldn’t talk to Williams. [His lawyers declined to make him available for interviews.] But I was interested in the world of the women and the world of the town. After that story appeared, people in Jamestown were upset. They said, “You make it out as if the whole town is terrible.”
 
LF – Well, it did sound like a depressing place, but you also make clear that it was no more depressing than many other American cities.
 
JW – The guy who became mayor, Sam Teresi — he was then the development director — was straightforward about what deindustrialization had done to the country. This was the mid-’90s, but while people tend to see deindustrialization as an effect of NAFTA, in that part of New York state and in New York City, it had all started much sooner, in the late ’60s. Then, by the late 1970s, everything starts shutting down. So, in Buffalo, where I grew up, where my uncle worked in the steel mill, my father worked in a factory as a tool and die maker — for the company that invented the windshield wiper — all of us were affected. Catastrophe hit these towns and these cities. Teresi was saying, even with the best plans that we have here in Jamestown trying to make something happen, no one’s going to make an oasis in the desert of deindustrialized America.
 
I think that’s pretty heavy, and I think people ought to have paid attention to that part of it, because why were these guys involved as [drug drealers]? There were no other avenues, certainly, for good wages. And the young women, if they weren’t in the business, they were working in screw factory making $6 an hour, and that’s the reality. And so sex in that context, and sex with Nushawn Williams in that context, was not the worst deal. He presented the best deal. And that should raise questions for all of us.It should also, as in every story, force us to recognize the humanity of every actor. That’s what I’ve tried to do. My whole career is to look at, even people who’ve done the worst thing, and try to see them not as monsters, not as demons, but products of a culture, of a society. They were once some little bitty baby in some mother’s arms, and something brought them to some point where, say, they kill Matthew Shepard out at the fence, or they do something heinous to prisoners at Abu Ghraib. Figures in the book exist within historical time and within social, cultural, and economic time. Their choices are confined the way all our choices are confined. There was no way for a Nushawn Williams to get a fair shake in this situation, He’d been declared a monster. He’d been declared public enemy. He’d been declared a criminal and had to be put away, and the state didn’t have particular laws criminalizing HIV, but it found other means. He was convicted of having sex with two underage women (statutory rape) and served twelve years in prison. Hard time.When he got out, the state decided that it was going to bring a case for civil commitment against him and declared him a “sexually dangerous” person. Then there was the kangaroo-type trial to prove that, which occurs all over this country. He was found indeed to be a sexually dangerous person, not for what he did, but for what he might do, and he joined some six thousand other people who are confined to mental institutions, detained indefinitely, without hope of getting out, supposedly for “treatment.”I think we need to look at the social mechanisms that organize consent for punishment.What’s always disturbing to me is that this ecstatic, panicky, moralizing approach is also embraced by the Left, by people who might shun, for instance, the Times reporting on terrorism.
 
LF – Yes, what about the sex exception on the Left? It seems especially jarring now, when ideas like the abolition of prisons and of police have so much traction, and restorative justice is a mainstream concept. The idea of due process would be taken for granted if someone was accused of murder, yet even people on the Left still demand the blood of anyone accused of a sexual violation.
 
JW – If we’re serious about culture and its formative power, then you have to look at the dominant culture that is the cauldron of current damaged life. We have to be serious about that, because it does form what James Baldwin called the “habits of thought” that reinforce and sustain the habits of power. I mean, toward authoritarianism. How we resist those habits of thought means separating yourself — or trying to — from them. That’s the work of a lifetime, because the propagandizing power of the culture is nonstop.
 
ABOUT THE AUTHORJoAnn Wypijewski is a journalist and the author of What We Don’t Talk About When We Talk About #MeToo: Essays on Sex, Authority and the Mess of Life.
ABOUT THE INTERVIEWERLiza Featherstone is a columnist for Jacobin, a freelance journalist, and the author of Selling Women Short: The Landmark Battle for Workers’ Rights at Wal-Mart.

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

The PJP Update – July 2020

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

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!”

 

New Zealand: Despite spitting not transmitting HIV, prison officers are tested every 3 months for a full year if coming into contact with spit

Corrections officer spat in face by prisoner waiting months for test results

A Corrections officer who was spat in the face by a prisoner during the Covid-19 lockdown has spent months waiting to find out if he now has a serious disease.

Under the Corrections Act, any officer who comes in to contact with a prisoner’s bodily fluids must undergo a year of testing for infections like HIV and hepatitis, before getting a clean bill of health.

The Corrections Association has asked for a law change that would force any prisoner who spits or throws bodily fluids to be tested as well.

On 25 March two Corrections officers were spat in the face while restraining a prisoner.

One of the officers told RNZ they had the prisoner’s saliva in their eyes and mouths and were then threatened by him.

The prisoner told them “I hope you get coronavirus and your kids and wives get it too and hope they die”, the officer said.

“This was very concerning as it was at the height of the coronavirus threat in New Zealand and there was the likely possibility of contracting other viruses.”

He was then sent to the doctor for tests and told he would not know if he had hepatitis until a second blood test three months later.

The officer said he would need one year of three monthly tests before HIV could be ruled out.

He said he was worried about catching a serious illness and waiting so long to find out was taking a huge toll.

“My wife and kids refrain from hugging me and I use my same plate, cup, and cutlery every meal.

“I must clean everything I use thoroughly to help reduce the possible transmission.”

The officer is still waiting for the all clear.

However, the New Zealand Aids Foundation says saliva is not an effective route of transmission of HIV and studies have shown HIV cannot be transmitted through spitting.

Corrections Association president Alan Whitley said the long delay for answers weighed heavily on the staff.

“It gives them 12 months of uncertainty about what’s happening with their health and whether they could have caught anything from the prisoner.

“It puts an enormous amount of stress on them.

“They’re sitting there not knowing whether they’ve got anything but if they have got something, is it contagious? What sort of treatment can I get? Can they get any treatment if they don’t know what I’ve got can there be a broad spectrum treatment. Is it the right thing to do?

“All sorts of things run through their mind,” he said.

In May, he asked the minister of corrections to make an amendment to the Corrections Act to make any prisoner who assaults an officer with bodily fluid to also be tested for possible infections.

“What it would mean is that the prisoner could be tested and the results of the tests released to the staff member for their doctor.

“Now, if there’s nothing, if it shows nothing, there’s a little bit of a comfort that they may not have picked anything up, they’ll still need to go through the same testing, but the understanding is there that the likelihood is low.

“If the prisoner has got something, then they can discuss that with the medical professional and he can or she can make a decision on what type of treatment they should undergo.”

However, the minister, Kelvin Davis, said changing the Corrections Act could be a breach of the Bill of Rights and would not provide a result any faster.

Any assaults on Corrections staff were completely unacceptable and he expected them to be responded to very seriously and the perpetrators held to account, he said.

“Changing the Corrections Act to introduce compulsory testing is unlikely to deter a person from spitting in the heat of the moment.

“Including a power in the Act to test a person by force is also likely to increase risk to staff, as it would require further close contact with the perpetrator.”

National Party corrections spokesperson Simeon Brown didn’t agree.

He said prison officers should not have to go through a year of uncertainty.

“I think prisoners are in prison.

“They essentially give up certain aspects of the human rights when they’re there and they are being held there to protect the rest of society from them.

“At the end of the day, this is about ensuring that corrections officers who are on the frontlines working to keep us safe are also protected from any diseases or illnesses they may pick up from prisoners.”

Brown said National would support a law change because Corrections officers deserved to have confidence the system would back them up.