Creating legal environments conducive to HIV testing, treatment and prevention & why dignity is important for health

Theo Smart interviews Edwin Bernard of the HIV Justice Network

The following interview is one of five I conducted at IAS 2013 to gather case studies for an internal document for one on the funders of my trip to the meeting. The funder didn’t need the full interview, but we thought that it was too good not to publish it in its entirety.

Theo: Start by telling us about who you are, who you work for now, or what you do now, and when you started working with Global Network of People Living with HIV (GNP+).

Edwin: I have been living with HIV for 30 years, diagnosed for 25 and I became an HIV activist sort of accidentally. I was a journalist first and then after nearly dying and coming back to life in and around 2000, I re-focused on HIV journalism and then started working for NAM (which publishes in 2002 and was the editor of AIDS Treatment Update (later HIV Treatment Update) for five years until 2008.

During that time I became very interested in HIV criminalisation [the use of law to regulate or punish people living with HIV, particularly the use of law to prosecute cases of non-disclosure of, exposure to or transmission of HIV] and since then I have started an organisation called the HIV Justice Network ( which focuses specifically on bringing together people from all over the world to advocate against HIV criminalisation. The Network includes social scientists and policy makers — not only organisations and individuals living with HIV. We’re trying to mitigate the harm of HIV criminalisation – what it does to people living with HIV, and also the broader public health.


T: Did you work with the Global Network of People Living with HIV (GNP+) on these issues?

Edwin: Yes. When I started, my very first experience working with GNP+ was helping to move the global criminalisation scan from the European/central Asia scan which was done in 2005.  I was brought in as one of several people to work on trying to make the scan global from 2008. I’ve worked with GNP+ on the global criminalisation scan from 2008.

And you know, I’ve worked with GNP+ on the global criminalisation scan every time it’s been updated since then – helping to gather the information and also analysing the data and trying to, you know, build the database.


T: So GNP+ maintains the criminalisation scan?

Edwin: Yes. The scan is a fantastic database. It has now grown to a global database that includes all the various punitive laws and policies that impact people living with HIV, and also the key affected populations.


T: Does that include laws pertaining to injecting drug use?

Edwin: What it’s doing is it’s linking to other sites, to other resources that actually have that information, based on the country. It’s initial aim was trying was to trying to understand, first of all: What are the Laws in the countries and how have they been applied, particularly around HIV non-disclosure, exposure and transmission. That’s been the focus, initially, until last year. After that, it is trying to identify and keep track of how many prosecutions have there been, how many convictions and more recently, at some of the advocacy on the issue. Then it expanded last year to start linking to other organisation’s sites who have been gathering data around the criminalisation of men who have sex with men (MSM), sex workers and people who use drugs.


T: How would you say that criminalisation impacts on HIV access to treatment and prevention?

Edwin: First of all I would say that criminal laws and prosecutions are perhaps the most obvious and the most egregious form of state sponsored stigma. So if you have a scale of stigma which starts with internalised stigma and then anticipated and then experienced, when you actually have a law that says that you’re a 2nd-class citizen that you’re lesser, or that you have to do things – like disclose your status or be held 100% responsible for safer sex – that other people who aren’t living with HIV have to do in order to live a fulfilling life — including sex, sexual and a reproductive life — I think that has an impact obviously on your self-esteem. But not just that, of course, not.

Now, we don’t have a huge amount of empirical evidence on how perceptions or fears of prosecution or fears of disclosure impact people’s access to treatment but obviously the reality is that it will send some people underground.

However, we are discovering, now, that there’ve been some very good studies done in Canada – Canada is a country that doesn’t use an HIV specific law but it’s had a series of Supreme Court rulings that have created actually one of the most difficult legal environments for people living with HIV. And so now a person living with HIV, in order to avoid being considered a very serious rapist, must either disclose before they have sex with anybody or if they don’t they have to have both low viral load below 1500 copies – which has to be proven – and a condom must also be used. So there’s been studies that have shown that this really now has a chilling effect on the person living with HIV’s willingness to talk about their risk or even access to HIV clinics in Canada — because they believe there is a link between the clinicians and the records they keeping, and how they can be used against them in court.

We also have studies now that show nurses are also incredibly fearful about the impact of the law — in terms of their practices of health, in supporting people living with HIV. I think it isn’t a big stretch to actually then say, since we have the evidence from Canada in particular, that people living with HIV are just not accessing services – either testing or in fact accessing treatment or going in and having regular follow up – because they are really afraid that the clinicians they’ll see are ‘in cahoots’ with the prosecutors.

Of course, the reality is that they are not ‘in cahoots’, but there is a perception that they are because there’s no such thing as absolute confidentiality in medical terms that there can be subpoenas, any information that a clinician writes down about you that can be used against you in a court of law. And it has been.

So that fear, it’s a bit like stigma – just the anticipation of the possibility that the health care provider might actually be forced to use this private information against you in court is actually, certainly we know, preventing people from accessing healthcare.

Since we know that this is happening in Canada –I don’t see why it would be different in any other country where prosecutions are rife or even where they are laws on the books, even if we don’t know about any prosecutions.


T: Right. Now by keeping track and documenting the laws in different countries and how they’re implemented etc. do you think there has been any cases where you or you colleagues have been able to sort of ‘turn the tide’ in one country? Or where that has worked —where they have now re-evaluated those laws, and started to dismantle them?

Edwin: Yes, I mean we can start with my home country, England. I worked alongside others to help the criminal justice system understand the limitations of scientific evidence in proving transmission and that was then incorporated into prosecutorial guidelines. Because in England, again, we don’t use a specific law we use a general assault law – one of the most important things you need for a guilty verdict is proof that transmission took place from one person to another. And it’s been that limitation of the scientific evidence, of phylogenetic analysis, that’s actually made a huge difference.

Elsewhere in Europe, the Supreme Court in the Netherlands, in 2005, was the first to ever make a decision on sexual risk and the impact of treatment – even before the ‘Swiss statement’ – and that resulted in no more prosecutions, except for really provable intentional transmission.

In Denmark, where they had an HIV specific law, advocates were able to persuade public health experts to talk to the minister of justice and explain that actually life expectancy with HIV was now similar to people who are HIV-negative — and this is proven in the Danish HIV cohort. Since the law was written in such a way that it actually could not be valid anymore because of the fact that HIV was no longer a serious life-threatening illness in 2011, that law was suspended, and again there have been no more prosecutions.

So science has really helped in Europe.

But around the world, there have been all kinds of interventions in recent years — the movement is growing. I think it started with GNP+’s global criminalisation scan which helped make people aware of what was going on in other countries and then starting to compare: ‘Well actually it’s really bad here compared to there’, and ‘look they’ve done this and they’ve got that’. That’s what I’ve continued to do with the HIV Justice Network — just by understanding what is going on elsewhere and learning from each other, things are incrementally getting better.

Things aren’t always successful in terms of advocacy. But there’s a growing movement. So in Africa – there have been several countries where the laws have been revised. There are 29 countries in Africa that have HIV specific criminal laws. There were none in 2000; there are 29 now.

But in some cases there have been some successes in either at least modifying the laws so that they aren’t as egregious as they used to be. For example:

1. Several countries used to specifically prosecute vertical transmission, or at least have it in the law, although they never actually prosecuted a case: that’s been removed.

2. And although advocacy isn’t always successful, for example, in Botswana – very strong civil society advocacy from BONELA against a new law, a severe public health law – although that has unfortunately passed, they are now going to take it to the Supreme Court. So we hope that we can support the people doing the work on the ground with international standards of what is happening elsewhere. You know, another piece of work I did was to work with UNAIDS on producing guidance for countries and their advocates on how to use science and human rights principles for a more rational use of the criminal law.  So we hope that’s useful in Botswana, across Africa, and in the rest of the world.


T: Right. You’ve also worked with GNP+ on at least one other issue?

Edwin: So after the scan, I was employed as the rapporteur on an international technical consultation on what was then known as ‘Positive Prevention’’ — trying to understand how we could move forward. Because the ‘Living 2008’ meeting had found that many people living with HIV in many of the regions of the world were very unhappy with even the name ‘Positive Prevention’ and the concept that the feeling that it was a punitive approach to people living with HIV to prevent so-called ‘onward transmission’. And after that technical consultation I was the editor of a new framework that gave a new name and a new approach – a human rights approach, and a person-centered approach – to ‘positive prevention’ called ‘Positive, Health, Dignity and Prevention’. And the ‘Dignity’ is key.

Dignity obviously refers to human rights. But also even in the name it’s in the centre of ‘Health and Prevention’. And for me it’s the key component: from the moment of diagnosis all the way through the treatment and care cascade, dignity is the key to how people living with HIV should be treated and it should always come from a human rights perspective.


T: How can ‘Dignity’ improve health?

Edwin: Well dignity means that a person living with HIV is empowered to first of all help themselves to understand the key ways to be healthy and to move through the pathways of treatment and care. But dignity is also about how healthcare workers treat people living with HIV — another major piece of work that GNP+ of course does is the Stigma Index and the consistent finding throughout the world is that stigma, whether it is anticipated or actually enacted, is most obviously experienced in healthcare worker settings. So healthcare workers need to treat people living with HIV with dignity, but dignity can come from within as well.


T: And what does it mean as far as treatment itself?  What should be the purpose of treatment in people living with HIV?

Edwin: Well of course it’s for their own health.  But people had begun to speak about treatment as prevention. Fortunately, ‘Positive, Health, Dignity and Prevention’ has changed this, obviously just as the WHO guidelines are now, ‘for treatment and prevention.’


T: Instead of ‘Treatment as Prevention’?

Edwin: Yes. Obviously treatment always comes first. — we can’t live the way that we want to live unless we’re healthy and treatment gives us that. As long as we take it when we’re ready and when it’s appropriate for us. And I know that from many surveys that many of us – and this comes back to the criminalisation issue – I would say all of us living with HIV do not want to expose or transmit HIV. So if we are empowered to actually understand that when we take treatment it actually reduces our infectiousness that actually helps not only as an incentive to continue to take treatment – as if it wasn’t important enough for our own health – but it actually benefits our partners and our communities.


T: What do you see as opportunities regarding advocacy for the future? With the new guidelines coming out, how can we advocate around them to further include the concepts of ‘Positive, Health, Dignity and Prevention’ – to make sure that PHDP is leveraged in our communities’ translation of the new WHO guidance?

Edwin: Well one of the things is that WHO guidelines are public health guidelines — they are about public health. And yet PHDP comes from a concept of  individual empowerment and so there is something of a tension between the concept of the WHO guidance and the concept of PHDP. But I think if we start to look at the WHO guidance through the lens of Positive, Health, Dignity and Prevention and think of the WHO guidance as an advocacy tool to increase access to treatment. So what we need to remember is that the WHO guidelines are really a political tool in order to make sure that people living with HIV have access to treatment and I think we have to think about the idea of the additional prevention benefit as an incentive for policy makers to provide expanded treatment. And I think we can use that argument.

But what we need to remember is that the WHO doesn’t really want to only treat people living with HIV just to prevent transmission. Treatment is for treatment and it’s great that it has an additional benefit but we also need to be informed ourselves of actually how it reduces our own risk of transmission.  So using the lens that is person-centred and human rights-centred, we can start to fight against oppressive laws, policies and practices but at the same time advocate for expanded access.



Leave a Comment

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.