It is often difficult for people to see a connection between human rights and public health.
Human rights are seen by most as abstract and unrelated to our everyday lives. Generally, they are seen as something that people in Myanmar need rather than people in Australia.
In fact, human rights have played an integral part in achieving what has been recognised as one of the industrialised world’s most effective responses to the global pandemic of HIV/AIDS – namely, Australia’s response.
Let me give an example. Testing for HIV infection is a very important part of combatting HIV. Without knowledge of infection, both on a population level and at an individual level, an effective response to HIV/AIDS is not possible.
There are a number of reasons why Australia has relatively high rates of HIV testing of affected populations. One reason, until the recent federal budget, was a universal health care scheme so that everyone has access to health care.
Another reason is flexible testing facilities for hard to reach, at-risk populations.
But, critically, the reasons for Australia’s HIV testing rates also include laws:
- Laws that protect the confidentiality of people who test for HIV.
- Laws that protect people who have HIV from discrimination, as well as their carers.
The reasons for Australia’s HIV testing rates include laws that protect many people from discrimination (though by no means all) who are at risk of HIV. They include laws that protect against vilification on the grounds of HIV/AIDS.
In these respects, the legal response to HIV/AIDS recognises that HIV/AIDS is stigmatised. In this way, the legal response helps create an environment that enables people with or at risk of HIV to access health care, and to take the steps necessary to protect and take care of themselves and their loved ones.
These are rights that people affected by this individual and public health risk have had conferred upon them by the law.
Many of us here today would take these rights – this legal environment – for granted. But, as we all know, laws are nothing without enforcement.
Enforcement, ultimately, means taking breaches of public health rights up to those who offend against the laws, and where necessary, seeking that these rights will be upheld by the courts.
In a modern world, it is a rare individual who has the skills and the intestinal fortitude to do that by themselves. We need specialists in enforcement, who know the law and who know the public health issues.
That is why, we are very lucky in New South Wales to have the HIV/AIDS Legal Centre.
Broadly speaking, worldwide, HIV/AIDS is a disease of the disempowered. People whose legal or social status is such that they cannot protect themselves against infection – and who are less likely to be able to prevent the onset of disease – are the most vulnerable to infection and to progression to AIDS.
People who are disempowered and who have a stigmatised disease are less likely to take precautions to prevent others from being infected, whether in terms of:
- ensuring they always use clean needles
- or always using a condom with casual sex partners
- or disclosing their infection to their spouse or other primary partner
- or always taking medication that will help manage their infection and reduce viral load
- or, indeed, even simply accessing professional medical help in the first place.
Biomedical strategies to stop the pandemic are all very well and good, but they cannot be implemented unless treatments reach the people affected – who in turn have to be empowered to use them.
There are, thus, really good public health reasons why it is in the interest of all of us that people affected by HIV:
- have their rights to confidentiality protected, and
- have their rights not to be discriminated against or vilified protected.
There are really good public health reasons why it is in the interest of all of us that people affected by HIV actually enjoy their rights to social security, or to a due hearing when their rights in other respects are threatened because of their HIV status.
For example, a person with or at risk of HIV who is about to lose the roof over their head is less likely than someone who is secure in their accommodation to take the steps necessary to protect themselves, and to protect those in their circle from the risk of HIV infection.
For example, the health prospects of someone with HIV will be enhanced if they do not lose the support and care they receive from their family or their primary carer. It also enhances the public health if that person is not deterred from taking legal steps to vindicate their rights by the risk that their identity will be publicised and forever associated with their HIV status. The remedy, with the help of HALC, might be an identity suppression order. Not only will that person feel more of a responsible member of the community if their rights are respected and upheld by a court – with all that that means for their approach to life and to their infection – they will also be less of a burden on the community because they will not have been alienated from their primary sources of support.
The complexities both of HIV/AIDS as a disease, and of the impacts it has on individuals mean that it would unrealistic to expect a regular legal firm or a generalist community legal centre to be across all the issues that can and do arise in the lives of people with, and at risk of HIV, and to be able effectively to deal with them. It would also be unrealistic to expect a legal firm or a generalist community legal centre to have the commitment to explore the options and pursue the available remedies for the large number of people affected by HIV who need legal advice and representation.
This is why, in the early 1990s, HALC was born, initially in Melbourne and shortly afterwards in Sydney. A specialist legal service was seen as necessary to deal with the unmet legal need specific to HIV/AIDS. HALC has proven over the years that a specialist legal service is necessary – particularly to address the evolving nature of the legal needs of people with HIV/AIDS, not only as society changes, but as the disease changes in response to the introduction of treatments.
The reason that need has continued is that, although in society the profile of the disease might change its shape and form, stigma continues to be attached to it. Stigma has deleterious effects in many different ways:
- It forces a boy or a girl to travel to another city or town to avoid seeing their local doctor or pharmacist.
- It results in children being treated differently from other children when at school.
- It engenders a conspiracy of silence so that someone at risk of HIV is not told about their partner’s HIV infection because of fears of rejection and shaming.
The stigma surrounding HIV/AIDS is, of course, not focused on infection with the virus. It derives in large measure from the question “How did she or he contract HIV?” – a question that the brain tends to be wired to ask whenever infection status is disclosed. And the vectors of transmission – the range of answers to that question – are, of course, themselves often stigmatised, even in a modern industrialised country like Australia.
A lot of the work for HIV/AIDS lawyers, therefore, is to dispel ignorance and fear – to ensure that the magistrates and judges receive up to date, scientifically accurate information about the condition and its consequences. Indeed, to ensure that clients with HIV-related legal problems receive advice that is based on up to date, scientifically accurate information.
But it is the very fact of the provision of legal advice or representation itself that can often do wonders to strengthen the resolve of a person affected by HIV to move forward and take their rightful place in society. And every person affected by HIV who takes that step forward becomes just that less vulnerable, less likely to be a charge upon society, less likely to become a victim, less likely to become only another public health statistic.
This is why the services provided by HALC are so important, not just to their clients but to wider society – indeed (I would argue) to government and state and national finances.
But there is still an enormous amount of work to do.
- Sex workers are obviously an at risk population, but they are marginalised and threatened at every turn.
- Injecting drug users are at risk but, unlike with homosexual sex, their mode of transmission remains illegal and thus stigmatised – with the consequences that injecting drug use behaviour remains difficult to monitor or modify.
- The issue of the criminalisation of HIV transmission needs particular attention as it demonises people with HIV and undermines the critical public health message of mutual responsibility to avoid contracting the virus.
These are but a sample of the areas in which HALC works, and indeed does a type of work that is not replicated elsewhere. The work is both client-based and also project work. The Centre shares its learning with other bodies – lawyers, research institutions, community organisations and government. The HIV/AIDS Legal Centre is a resource which is truly deserving of our support. I commend HALC to you all.
TBS kindly thanks David Buchanan SC for allowing the reprinting of this speech.