Year in review: Celebrating successes, highlighting the many challenges ahead

This past year has shown us what happens when one pandemic –  HIV – is overshadowed by another pandemic, COVID-19.  Despite the many lessons learned from our collective advocacy against HIV criminalisation that we and our HIV JUSTICE WORLDWIDE partners highlighted in March, these lessons were mostly ignored by policymakers around the world.

The result was a series of knee-jerk legal, policy and police responses leading to the overzealous policing of people living with HIV and other key and inadequately served populations already subject to existing inequalities in law and policy, which we have been highlighting in our HIV Justice Weekly newsletter since March.

This latest pandemic overshadowed, and in some cases undermined, the work we and others have been doing to ensure a fair, just, rational and evidence-based response towards people living with HIV by the criminal justice system.

This past year we documented at least 90 cases of unjust HIV criminalisation in 25 countries, with Russia and the United States being the worse offenders.  Women living with HIV were accused in 25% of those cases. Three of these cases were for breastfeeding.  In the United States, more than 50% of those accused in HIV criminalisation cases were people of colour.  

2020 also saw Poland passing a new law against COVID-19 that also increased the criminal penalty for HIV exposure, and number of disappointing HIV criminalisation higher court appeals in the US (Ohio), and Canada (Ontario and Alberta) that appeared to ignore science over stigma.

And yet, despite the many difficulties of 2020, the movement to end unjust HIV criminalisation has continued to gain momentum.

In the United States, Washington State modernised its HIV-specific criminal law in March, reducing the ‘crime’ from a felony to a misdemeanour, adding in a number of defences, and eliminating the sex offender registration requirement.  Earlier this month, legislators in Missouri published plans to modernise its HIV-specific criminal law next year.

In Europe, Sweden abolished the legal requirement to disclose HIV status in March, the Spanish Supreme Court set an important precedent for HIV criminalisation cases in May, and in June, Scottish police ended the stigmatising practice of marking people living with HIV as ‘contagious’ in their database.

In Francophone Africa, HIV-specific criminal law reform in Benin and across the region is looking likely thanks to a recognition that existing laws do not reflect up-to-date science.

And in Eastern Europe and Central Asia, a process to completely abolish the draconian HIV-specific criminal law in Belarus has begun.

There is still so much more to do, however.  Despite these successes, as well as the many milestones the HIV JUSTICE WORLDWIDE movement has achieved since its launch in 2016, we will not rest until everyone living with HIV in all their diversity is treated equally, fairly and justly by all actors of the criminal justice system.

UK: Police Federation working with the National AIDS Trust to tackle HIV stigma and misinformation

Busting the myths around HIV

The Federation is working with the National AIDS Trust to tackle the stigma of HIV and provide reassurance for colleagues around its transmission.

Over the decades, many officers have been spat at or bitten by individuals who ‘weaponise’ the virus by claiming to be infected. But the chances of acquiring HIV through spit or a bite are close to zero, and no police officer has ever acquired it in this way.

There are only three ways a person can be infected – needle sharing, sexual intercourse and breastfeeding.

PFEW National Board member Simon Kempton, who has led on the issue of communicable diseases, said: “The act of spitting at a police officer is vile, is disgusting and particularly during a global pandemic carries risks of transmitting other diseases. But we know from decades of research that it’s impossible to transmit HIV by that method, and people who threaten us with that only increase that feeling of fear and stigma.

“The Federation is keen to help colleagues understand the true risks of transmission, to help them deal with the fear factor that’s been built in unnecessarily. Knowledge IS power and helping officers to understand how negligible the risks are is important to their mental health after being assaulted.”

HIV if left untreated, attacks the immune system. However, if caught early and treated, it will not lead to AIDS which is the advanced stage. AIDS is now very uncommon in the UK thanks to effective treatment and people living with HIV can live full and productive lives with normal life expectancy.

Since HIV is now classed as a disability and a protected characteristic, it is not appropriate to record HIV status as a warning marker on police databases, except in situations like Custody where treatments might need to be administered.

DC Tracy O’Hara QPM of Merseyside Police explained: “These markers should only be on a custody record health assessment and even then, only available to those who need to know this information. So, if someone says, ‘I live with this condition and I need my medicine’ that should be on the record, but HIV status is not something the police service should be disclosing nor holding as warning markers or flags.

“It is important to note that we have colleagues living with HIV. How must they feel when we add to stigma or we store this information in such a negative way? They are never going to feel comfortable sharing their status to ensure their health is looked after. So this is not simply about our communities it is about our colleagues as well.”

More information is available at www.nat.org.uk

Look out for World AIDS Day on 1 December. This is an opportunity to show support for people living with HIV, and to remember those lost to the virus.

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.

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!”

 

Australia: Proposed mandatory HIV testing in New South Wales is neither necessary nor useful

HIV testing people who spit at police or health workers won’t actually protect them

People who expose a police officer or emergency worker to body fluids would be compelled to have their blood tested for HIV, hepatitis B and hepatitis C, under a proposed law in NSW.

But this law isn’t needed to protect first responders. We already have evidence-based protocols that are working well to protect them from blood-borne infections.

Rather, the proposed law is a political reaction to a problem that doesn’t need fixing. It is also not supported by scientific evidence or Australian government policy on HIV testing.

What is NSW proposing?

In November last year, the NSW government proposed legislation which gives authorities the power to test a person for HIV, hepatitis B or hepatitis C if they have deliberately exposed a front-line worker to their body fluids (saliva or blood).

Examples might be if a person bites a police officer restraining them during an arrest or protest; someone biting or scratching a youth justice or corrections officer; or a person behaving unpredictably, exposing ambulance officers to their body fluids.

The mandatory testing order would come from senior officers within the worker’s own agency. If the person does not comply, they can be forced to do so. They have 48 hours to appeal to the NSW chief health officer. Anyone who refuses a mandatory testing order will be committing an offence, with a maximum 12 months prison term or an A$11,000 fine, or both.

Is this happening elsewhere?

Five states have legislation that allows mandatory testing, according to a report by the National Association of People Living with HIV.

The proposed NSW model is closest to the one Western Australiaintroduced in 2014, where police can order testing. This resulted in 377 testing orders in the first four years.

In contrast, in Victoria the chief health officer has the power to order a test or issue a public health order to enforce it if necessary. In those same four years, not a single person was ordered to be tested.

What’s the risk of transmission anyway?

Outside of sexual transmission, HIV is transmitted through blood. Police and corrections officers are far less likely to be exposed to a blood-borne virus than hospital workers. When exposure does occur, it tends to be less serious.

There does not appear to be any recorded case of an Australian police officer being infected with HIV in the course of their duties.

Rates of HIV infection in the community are dropping anyway. Around 0.1% of the Australian population is living with HIV. The vast majority are on effective treatment which reduces transmission to zero. By 2022, Australia’s aiming for virtual elimination.

As hepatitis C and HIV are blood-borne viruses, saliva alone cannot transmit them. Sometimes, the mouth can be contaminated with blood, particularly if there has been traumatic injury. But contact between bloody saliva and intact skin does not transmit hepatitis C or HIV.

A 2018 study bringing together more than 30 years of studies in HIV transmission concluded:

There is no risk of transmitting HIV through spitting, and the risk through biting is negligible.

A similar 2018 study looked at the risk of hepatitis C transmission and concluded the risk “appears to be very low”.

Of the blood-borne viruses, hepatitis B, the most transmissible of these viruses, is completely preventable through a vaccine all front-line workers receive.

What’s happening now?

In NSW and nationally, if someone is exposed to another person’s body fluids at work, they are assessed by health care workers in their agency.

The nature of the exposure, the possibility the other person could have a blood-borne virus (or if known, whether they are infected) and the resulting risk are considered when evaluating both the injury and the need for testing. If needed, they are tested according to policies informed by scientific evidence.

But the overwhelming majority of injuries, including bites, do not carry a risk of transmision.

In the rare scenario, where the risk of HIV infection cannot be ruled out, the worker may be offered medications to prevent infection, and follow-up blood tests. These medicationsdramatically reduce risk of transmission but must be taken within 72 hours of the exposure.

Workers potentially exposed to hepatitis C can be monitored for infection, and given medications with near 100% cure rate if required.

So current measures are more than adequate to deal with all situations a police officer or other front-line worker will confront, and have been so since these issues were first addressed in the early 1990s.

Compulsory testing could cause harm

Front-line workers deserve our support and protection. But if these workers feel anxiety or distress related to their risk of contracting blood-borne viruses then their health services must more adequately reassure them.

New measures won’t help reduce their already low risk of transmission and therefore don’t provide any additional reassurance. Focussing on getting the other person tested might increase their anxiety when the risk is negligible, irrespective of the person’s status.

In the rare higher risk situations, perhaps an ambulance officer injured while at a car accident where there is massive blood loss, the risk of a blood-borne infection needs to be assessed and preventive medicine offered. Delaying this assessment while waiting for the results of compulsory testing has the real potential to harm the worker.

The proposed legislation also stigmatises people living with blood-borne viruses, incorrectly depicting them as dangerous, creating unnecessary fear, leading to discrimination.

We are working with the board of the Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine (the peak body representing HIV, viral hepatitis and sexual health workers) and oppose mandatory testing measures as neither necessary nor useful.

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.

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.

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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.