Safer law: moving from theory to practice

Edwin J. Bernard
Published: 19 July 2006

The criminalisation of HIV transmission may be the starkest - and most publicised - intrusion by the law into the lives of HIV-positive individuals, but it is certainly not the only way that the legal system is changing the face of HIV in the United Kingdom in 2006.

In addition to criminalisation, concerns by both doctors and patients regarding confidentiality; the recent calls for HIV-testing of all immigrants; the lack of access to treatment for - and dispersal or deportation of - many so-called asylum seekers; and debates around HIV and sex education in schools, mean that the legal aspects of HIV have become a major concern for many people involved in HIV prevention and treatment, as well as those who provide all kinds of support for HIV-positive people.

In response to these and other issues, Dr Matthew Weait, lecturer in law at Keele University, organised a series of seminars entitled, HIV/AIDS and Law: Theory, Practice and Policy, in collaboration with the African HIV Policy Network, Birkbeck College and George House Trust. This series of three seminars, held between December 2005 and June 2006, and funded by the Economic and Social Research Council, brought together academics, legal and medical practitioners, HIV voluntary sector, graduate students, activists and people living with HIV in order to explore the ways in which the law is having an impact on people living with HIV.

Dr Weait has been actively involved in providing legal research support to the HIV voluntary sector for the last decade, and is the facilitator of the UK Law and HIV/AIDS Project: an initiative intended to provide information and resources for those interested in the impact of law on people living with HIV.

He recently addressed the British HIV Association (BHIVA) Spring conference, held in Brighton last March, where he called upon the entire HIV sector to undertake "a commitment to safer law."

Q: What were the main objectives for the recent seminar series on HIV and the law?

A: The seminar series was intended to do a number of things. However, its main aim was to integrate the practical, theoretical and policy dimensions of HIV in order to achieve a clearer, broader and more holistic picture of the ways in which law impacts on the lives of people with HIV.

The first seminar, held at Keele last December, sought to provide a sense of the various substantive areas of law where HIV was implicated. Although criminalisation provided a significant impetus, we also examined how law impacts upon immigration and asylum; access to treatment; confidentiality and patient's relationships with clinicians; family life; social work; disclosure to children; and sex education.

The second seminar, held at Birkbeck College in March, examined the broader themes of vulnerability, exclusion and stigma, and looked at the impact of the law on marginalised groups living with HIV, including 'asylum seekers' and injecting drug users.

The third seminar, held at Keele last month, included many international contributors who had been tackling these issues for far longer than we have been in the UK. Its focus was to try and understand the different ways in which the law can be used strategically to address all the previously identified issues.

The intention was that we would end up with a set of ideas, collaborations, research priorities, and practical interventions that would make a real difference, and would be informed by real knowledge, scholarship and understanding.

Q: Having attended the last two seminars, I would say that in many ways you were extremely successful. I was particularly impressed by the involvement of many individuals living with HIV, myself included, on both a personal and professional level.

A: It was very important to me to ensure that the people who are directly affected by these issues were involved in the formulation of those research priorities and actions. It wasn't just about academic or clinical or legal professionals telling HIV-positive people how they should go about addressing these issues; it was about enabling people living with HIV to have their say about what might or might not work.

Q: The international perspectives provided much food for thought. What insight do you think we gained from understanding that people in other countries are fighting similar battles?

A: Although different countries have different legal systems, it is possible to adapt their methods to the UK, and I came away with the understanding that interventions running in parallel at different levels are the most effective way to move forwards.

An approach currently used in Canada, by the Pivot Legal Society in Vancouver, where individual experiences are documented using affidavits, seems very powerful to me. Here, they are using the law in order to get street level knowledge which can then be used to influence legal and political decision-making.

In contrast, the United Nations has developed a human rights audit approach, which involves gathering macro data about countries’ compliance with international human rights obligations and then feeding that down through the system, from the top end.

Meanwhile, the success of the AIDS Law Project in South Africa shows that you can litigate very effectively with knowledge and achieve real change.

And using a tool known as Rapid Policy Assessment and Response, Scott Burris, from the United States, taught me a very important lesson: you don't win battles at the national level, you win local battles.

So I think that there is a role for high level policy, there's a role for litigation in the courts, and there's a role for street level preventative legal action. And I think one of the things that would be a good thing for us to start with in the UK, would be to identify where HIV and law intercept at the local level, in order to see what changes could be brought about there. This could be done, for example, through lobbying local councillors or Primary Care Trusts. There are a number of different ways in which voices can be heard at different levels where change might be achievable. Of course, we can – and should - also address the Department of Health, the Home Office, and the Department for International Development; but doing that means getting involved in bureacracies which serve political masters, who may feel helping that changing the law to ensure greater legal protection for people with HIV in the UK isn't going to be a vote-winner among people who read the Daily Mail.

Q: Nevertheless, another remarkable achievement of the final seminar was that it was attended by civil servants who work within the three governmental departments you just mentioned. During the weekend they were asked to commit to some better "joined-up thinking." Each department appears to have different - and often conflicting - policies regarding HIV, and it's notable that whilst Blair's government have done much to tackle HIV/AIDS internationally, they rarely publicly speak about HIV within the United Kingdom, despite the fact that, due to the impact of recent immigration from high prevalence countries, there is an inexorable link.

A: I thought that it was fantastic that representatives of the three Departments were there, and it showed an enormous commitment on their part, and a real desire to learn more. My understanding is that they have agreed to meet, in order to discuss ways in which more strategic collaboration between the three Departments can be developed. Obviously they come from different levels within their Departments, and have different functions and responsibilities, so they may well be constrained, to some extent, by their political masters and mistresses. But it seems to me that there was a genuine commitment on their part to open a dialogue between the three Departments, between them at least, as individuals, and to identify potential ways forward.

Q: One of the most striking - and positive - outcomes of the seminar series came out during the final round table discussion, 'What next?', which suggests that, despite the many negative outcomes regarding the criminalisation of HIV transmission, that it has had a least one positive effect: galvanising the HIV voluntary sector to work together towards a common goal. Representatives of many of the major UK HIV charities - the African HIV Policy Network (AHPN), George House Trust, HIV Scotland, the National AIDS Trust (NAT), Positively Women, Terrence Higgins Trust (THT), the UK Coalition of People Living with HIV and AIDS (UKC), and NAM - voiced a general consensus that there had been a similar lack of "joined-up thinking" in their response to criminalisation, and other legal issues, and that this needed to be rectified.

A: I think that's a really important point. We really did need to come together to identify ways in which links can be established to ensure that the kind of lack of communication that's happened in the past doesn't happen again. Unfortunately, over the last decade, due to the fact that different HIV voluntary organisations are seeking the same limited funding resources, there has been a degree of friendly competition between some of the organisations. The advantage of a university setting was that it provided a neutral space where people could speak freely without being constrained by other people's budgets, and by other people's agendas.

Q: Still, although we identified where we'd gone wrong in the past, and agreed that it shouldn't happen again, I'm not entirely sure that we identified how we would then move forward.

A: In a sense I saw the weekend as being an unfinished conversation. Since then many of us have remained in touch, and are continuing the conversation via email. There's strong support for us to put together a bid for funding to develop a UK HIV/AIDS Legal Network along the lines of the one in Canada. This would operate as a central point of communication for all of these issues and bring together best practice: where proper knowledge and legal expertise could be trusted and shared between everyone working in the HIV sector. The difficulty, of course, is funding, because it may be extremely difficult for funders to imagine funding something which could be constructed as helping in 'the defence of wicked people'. And that is a real problem when it comes to subject of criminalisation.

Q: I became acutely aware of some of criminalisation's ethical and moral difficulties during the weekend. Many of the HIV-positive individuals attending the seminar - myself included - do not want to be seen to condone the actions of some of the people who have been prosecuted so far, but at the same time we are afraid of the consequences of criminalisation for ourselves and others.

A: I think it's really important to recognise the long term impact of these prosecutions, whatever one's ethical or moral stance. What harm does criminalisation do to the broader question of public health? Does it mean that people are so afraid of disclosing their status to sexual partners, because of the kind of coverage that people with HIV get in the press as a result of the prosecution, that they're not going to disclose despite the consequences? Does it mean not telling the truth about a sexual history to an HIV or GU clinician, which is critical to contact tracing. Will it make people think twice about voluntary HIV testing, or being honest about the results of that test? If that's the case then we've lost a significant battle in the war against onward transmission.

What we should really be concerned about is ridding the world of this virus, and it seems to me that we need to think of HIV and AIDS socially, and not individually. We need to think of it as something that affects communities and which needs to be responded to at a social and community level, and not in the one-on-one adversarial process that a criminal trial produces, and which only ever sends out the message that one person was responsible and the other wasn't; that one person's a victim, and one person's a perpetrator. Criminal trials, whatever their other effects, affirm in the public and popular imaginiation that HIV-positive people can only be understood as vectors of onwards transmission.

Q: The June seminar took place the weekend after Sarah Porter was sentenced to more than three years in prison for 'reckless' HIV transmission. What was particularly galling about that case was the way the Metropolitan Police proactively investigated her former sexual partners to see if she had infected anybody with HIV. Since then, two different police forces in the Midlands have gone one step further and used the local press to 'fish' for the sexual partners of people they are currently investigating for 'reckless' transmission. It's hardly surprising that there was a renewed call for individual activism on the final day of the seminar. Do you think that there a place for placard-waving activism? One suggestion made at the seminar was to stand outside the courtroom wherever a criminalisation trial is being held, holding a two-sided placard that reads: 'Arrest me' and 'Defend me', to make the point that most HIV-positive people have been 'victims', and are potentially 'perpetrators', of onward transmission.

A: Although I'm agnostic about the benefits that can be gained from an 'arrest me/defend me' placard waving campaign, I can see that it may well raise public consciousness over this issue. One of the things that has prevented that kind of activism from happening with HIV since the advent of potent anti-HIV therapy is that, at least in developed countries, HIV isn't seen as a crisis anymore. With the exception of these criminalisation cases, HIV is off the national public agenda.

Q: That kind of activism might not suit people who would like to be able to do something about the way the law is impinging on our lives. What else can people living with HIV do to empower themselves?

A: The most important thing is that you pursue the form of political engagement that suits you. That could be trying to stop the police from expressing their opinion about criminalisation cases, which seems to me to be unethical, by complaining to the Independent Police Complaints Commission. It could be trying to change the way in which the media covers only the negative aspects of HIV-positive life, by raising the issue in opinion-making newspapers. And, perhaps, if you are confident in your diagnosis, and feel able to disclose your status, you could, for example, talk about the importance of sex education in schools, or of condom provision in prisons.

My hope is that HIV-positive people will realise that the law isn't necessarily something to be afraid of; that the law isn't a language that only other people can speak; and that it is possible to engage with the law directly and in an informed way to achieve real change.

Presentations from the first two seminar series are now available for download at the UK Law and HIV/AIDS Project. Audio recordings of the presentations from the June seminar will be available from the site shortly.

Community Consensus Statement on Access to HIV Treatment and its Use for Prevention

Together, we can make it happen

We can end HIV soon if people have equal access to HIV drugs as treatment and as PrEP, and have free choice over whether to take them.

Launched today, the Community Consensus Statement is a basic set of principles aimed at making sure that happens.

The Community Consensus Statement is a joint initiative of AVAC, EATG, MSMGF, GNP+, HIV i-Base, the International HIV/AIDS Alliance, ITPC and NAM/aidsmap

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