Issues Paper No. 4

PEOPLE LIVING WITH HIV: THE LAW, ETHICS AND DISCRIMINATION
Julie Hamblin

TABLE OF CONTENTS

EXECUTIVE SUMMARY
A TRUE STORY
HUMAN RIGHTS AND HIV
THE LAW AND HIV
ACKNOWLEDGEMENTS
BIOGRAPHICAL NOTE

EXECUTIVE SUMMARY

The story of Dominic d'Souza, one of countless many HIV infected people, illustrates that the law can play a central role in response to the HIV epidemic. Discrimination against people with HIV is a deep and evasive problem exacerbated by the fact that many of the people who have been and will be affected by the epidemic are people in a socially and economically disadvantaged position. No programme to address the epidemic can afford to ignore the fact that HIV threatens human rights as profoundly as it threatens public health.

The principles that should guide legal policy on HIV are very simple:

a) The law can and must be used to establish a protective and supportive framework for people affected by the epidemic and not a punitive one;

b) Careful and informed ethical debate can guide the direction of the evolution of the law in this area;

c) The law can be used actively as an instrument to bring about change in personal behaviour; and

d) Only by having an informed group of engaged lawyers will the legal and human rights issues associated with the epidemic be properly tackled.

 

A TRUE STORY

 Let me start with a true story. This story began at 8 am on the morning of 14 February 1989, when a young man living in a coastal province of India received a visit from the police. He was asked to report to the local police station later that day. No reason was given for the request, but the man assumed that one of his friends was in trouble and had asked for his help. Upon arriving at the police station, he was taken immediately to the local hospital by two policemen and told that he must undergo a physical examination. By this time, he was quite scared as he did not know why he was being detained. His fear did not abate when he saw that six policemen were standing at the door of the casualty ward, two of them armed with rifles and the others with bamboo sticks.

The examining doctor entered the man's name in a register book. The man was able to see that on the cover of the book was written the word "AIDS". This was how he first came to know that he was infected with the human immuno-deficiency virus (HIV) -- no explanation, no counselling, not even any words of sympathy or support that might suggest that this was not the end of the road.

But there was worse to come. From the hospital, the man was taken by police escort to a former TB sanatorium where he was to be detained against his will for the next 64 days. He was placed in a small dirty room, completely alone, not knowing why he was there or what would happen to him. He was not permitted to contact his family or friends to let them know where he was. In his own account of those first 24 hours, he said that he survived only because he had no knife or gun with which to take his own life.

 Over the next few days, the reason for the man's detention gradually became clear. He had donated blood several months previously. The local hospital had tested his blood for HIV without his knowledge or consent, and had found that he was HIV positive. But instead of contacting him, the hospital informed the local police. The police had then acted in reliance on the Public Health Act in force in that province which provided for the mandatory detention of all HIV positive people. Under the Act, detention was indefinite, regardless of whether there was any actual risk of HIV transmission to other members of the public.

A month went by, and the man remained in detention. By this stage, his family and friends had been able to make representations on his behalf to the government pointing out the injustice, not to mention pointlessness, of his detention. He received extraordinary support from the people living in his home village who wrote demanding his release. Eventually, he mounted a court challenge to the legislation authorising his detention and, after 64 days of detention, was granted interim leave to return home ... not, however, because of any illegality in the detention provisions as such, but only because the court considered that the HIV testing procedure that had been followed was not sufficiently reliable to justify detention.

Shortly afterwards, the Act was amended, abolishing the mandatory requirement of detention of all HIV positive people but permitting detention at the discretion of the health authorities. A court challenge mounted against the amended legislation failed.

Many of you may already have recognised that the man in this story was Dominic d'Souza. The law in question was the Goan Public Health Act which remains in force today. Dominic went on to become one of the leading advocates in India of the rights of people with HIV. He died from AIDS (acquired immuno-deficiency syndrome) in May of 1992, but his presence has been felt in many ways at this conference. Before his death he wrote:

 "No matter how much I try to calm myself, I cannot help feeling desperately alone and afraid when I think that tomorrow I may meet with an accident and may require immediate medical attention. What happens then? Will anyone be willing to even take my X-ray? ... Why then do we still hear of medics refusing to even set eyes on HIV positive persons, let alone touch or treat them?"

"I live to take each day as it comes. I know that with God, nothing shall be impossible. I have the love of my family, neighbours and friends who will always be there to help me. I should like to put two questions to you: If you found someone you knew had AIDS, would you avoid them? What if your brother or sister had it?"

And of course, in a very profound way, Dominic was the brother of all of us here today.

No one hearing this story can doubt that the law has a role to play in the response to the HIV epidemic. Legal issues arose at every point in Dominic's story: his blood was tested for HIV without his consent, the hospital did not disclose his HIV status to him, confidentiality was breached by reason of the disclosure to the police, and he was then detained under the Public Health Legislation. And for Dominic, the story did not end there. When he attempted to return to work, he found that his job had already been given to someone else, and his employer asked him to resign because of concern that other employees would not want to work with a person with HIV.

We have heard over and over again this week about discrimination against people with HIV. We know that it is a deep and pervasive problem. What happened to Dominic is the reality for many people with HIV, whether they live in the United States, Australia, Asia or Africa. Ignorance about the way HIV is transmitted, unjustified fear of infection and prejudice against groups of people perceived (often wrongly) to be at risk have transcended national boundaries and differences of race and culture. No policy to address the effects of the epidemic can afford to ignore the fact that HIV threatens human rights as profoundly as it threatens public health.

HUMAN RIGHTS AND HIV

When discussing human rights in the context of the HIV epidemic, two important points need to be made. The first is one of the most important reasons why respect for human rights is so critical in the response to the epidemic. The second is a myth that needs to be dispelled.

 The first point -- the reason why human rights are so important in the context of HIV -- arises from the fact that many of the people who have been and will be most affected by the epidemic are people who are already in a socially disadvantaged position. We have already heard this week about how the global burden of HIV infection in the years to come will be borne overwhelmingly by people in developing countries. Increasingly, inequalities of gender, race and wealth are emerging in the demography of HIV infection, with infection rates increasing disproportionately among women and even more so among poor women. The main global risk factors for HIV infection in the 1990s will not be sexual activity or drug use as such but rather social and economic dependency.

These underlying socio-economic causes of vulnerability to HIV operate in many ways. Because HIV infection is preventable, people who have access to information and appropriate preventative measures and have the means to implement these measures will in the future be able to protect themselves against infection. The people who remain vulnerable are those who are denied the means of protecting themselves against HIV because of economic need, for example, or powerlessness to control the basis upon which their sexual relationships take place. Many factors come into play here, including poverty, geographical isolation, inadequate health care and health education, and cultural values that compel certain practices that expose some members of the community to the risk of HIV transmission.

 For women, the social and economic obstacles to avoiding the risk of HIV infection are particularly great. Their position within families and societies means they are often not free to make their own decisions about their sexual relationships or to insist upon measures, such as the use of condoms or fidelity on the part of their partner, that would reduce the risk of exposure to HIV. Cultural expectations in relation to marriage and childbirth and the absence of means of economic support outside the family unit compound the difficulties for women to avoid exposure to the virus.

The fact that those now most at risk of HIV infection are those who are already socially and economically vulnerable means that the need to incorporate human rights concerns into HIV policy has a particular resonance. Similar issues arise in relation to drug users, gay men and sex workers, for whom discrimination and social stigmatisation were already pervasive problems before the HIV epidemic arrived on the scene. What this means is that these people, more than any, need protection against the abuse of their rights threatened by the HIV epidemic. As Justice Michael Kirby has said, human rights matter most when they are most under threat.

So there is a special need, a special responsibility, to honour the rights and needs of these people. Moreover, the fact that these human rights are so much under threat presents unique challenges to effective policies for preventing the further spread of HIV.

This leads to my second point: the myth that needs to be dispelled.

 Too often, the HIV policy debate is characterised as an inevitable conflict between public health and individual rights. Policies that infringe individual rights, such as forcible HIV testing or detention are defended on the basis of an overriding need to protect public health. But an effective response to the epidemic demands a more complex understanding. This is not to say that there will never be conflicting values or interests because of many of the necessary measures may represent profound challenges to prevailing cultural beliefs and practices. However, an effective response to the HIV epidemic requires, above all, a recognition by all individuals, the infected and the uninfected, and by communities and governments that they have a common interest in working together to do whatever is necessary to contain the spread of HIV in order to ensure the survival of their families and societies. The emphasis in our response to the epidemic must be on this community of interest rather than on the potential conflicts.

We now have a decade of experience with the HIV epidemic and with a range of different policies that have attempted to reduce the spread of HIV. We know what works and what does not. We know that alienating people with HIV from society, making them feel they have nothing to gain by protecting themselves or others, breeds helplessness, indifference and lack of respect for other people. These are perfect conditions for the spread of the virus and will undermine any efforts to encourage the voluntary behaviour changes that are necessary to prevent the spread of infection. In contrast, policies and laws that reduce the stigma attaching to HIV infection and build the self esteem of people with HIV or at risk of infection can create the environment of mutual trust, support and collaboration that is critical to bringing about and sustaining behaviour change.

The coalition of interest that is required must include people living with HIV. Their collaboration is fundamental to effective HIV policy interventions - not only because of the immediate need to prevent further transmission of the virus but also because people who are already living with HIV can be powerful agents for behaviour change. No one who heard Bill O'Loughlin speak yesterday can doubt that.

Respect for the rights of people with HIV must exist if this necessary collaboration is to be achieved. There must be a sense within each community that all its members, both those directly affected and those not yet affected, are equally valued and supported. Only within a supportive environment that respects individual worth will people have the courage to acknowledge publicly that they may be infected or at risk of infection and thereby to take the first step towards changing the behaviours that place them and others at risk.

So let us dispel the myth that there must be an inevitable conflict between individual rights and public health. And let us also dispel the myth that respect for human rights can be a gloss to be added to other aspects of HIV policy. It must pervade our whole thinking and experience of this epidemic if we are to be able to respond effectively. How do we convince our policy makers of this? Of course we can argue that respect for human rights has an inherent value of its own, and we would hope that this argument would be compelling. But if we cannot persuade our HIV policy makers on this ground alone, we have to convince them that, as an HIV prevention measure, respect for human rights works.

THE LAW AND HIV

So what does this mean for legal policy on HIV?

  Clearly, the law has an important impact on how the HIV epidemic is experienced in any country. This became evident very early on in the epidemic because many of the people affected, such as sex workers, gay men and drug users, were already the target of punitive legal provisions. Moreover, the fear generated by the epidemic has meant that responses relying upon punitive, restrictive models of law have been common. Dominic's case is just one example of many.

In this way, the law has been an important part of the backdrop against which the experiences of people with HIV have been lived and intervention strategies have been implemented. Of course it is only one element of many that go to make up this backdrop, but it has been a critical element - in both a practical and symbolic sense.

So we know that the law matters in the context of this epidemic. The more important and the more difficult issue is to identify the way forward if we are to use (or, on occasions, not use) the law constructively and appropriately in our response to HIV.

In many ways, the principles that should guide legal policy on HIV are very simple. There are four points that I would like to leave you with today.

A Protective and Supportive Legal Framework

The first point, I hope, is obvious. The law can and must be used to establish a protective and supportive framework for people affected by the epidemic and not a punitive one. This is a critical element of the environment I described earlier, the environment of collaboration and mutual support that emphasizes the community of interest between the infected and the uninfected and between governments and individuals. Only in such an environment can we be confident that our efforts to reduce the transmission of HIV and care for those affected will have optimum effect.

 Creating a supportive legal environment can involve both negative and positive legal interventions. The negative interventions arise from the need for absence of law in some contexts. The laws that we do not need are the laws which discriminate against people with HIV, which distance them from their communities and which make it less likely that these people will share in the common interest to reduce the effects of the epidemic. Examples of such laws are:

-- Laws that make homosexuality a criminal offense.

-- Offenses relating to drug use and prostitution that have the effect of making it harder to reach drug users and sex workers with HIV care and prevention measures.

-- Laws restricting the availability of condoms and needles and syringes.

-- Censorship and broadcasting laws that restrict the dissemination of safe sex information.

-- Laws that permit HIV testing without consent or the detention of people with HIV.

-- Immigration and travel laws that restrict the movement of people with HIV between countries.

These laws have no place in a sensitive and sensible response to the epidemic and need to be repealed.

Then there are the positive legal interventions - the ones that can actively promote the supportive environment I have described. These legal interventions include:

 -- Human rights laws that give legal effect to rights such as the right to privacy, the right to protection against unlawful search and seizure and rights to protection against unlawful detention.

-- Anti-discrimination laws that will provide redress in the event of discrimination in employment, housing, access to health care etc., against people with HIV or their family or friends.

-- Legal provisions that protect the confidentiality of a person's HIV status.

-- Laws compelling a person's consent to be given before HIV testing is undertaken.

-- Laws that encourage appropriate workplace practices, e.g. infection control procedures and HIV education for employees.

These are just a few examples of many. The thrust of this approach to legal policy on HIV must be to use the law not as a weapon but as a protective instrument that respects the worth of all individuals and reinforces co-operative efforts to deal with the effects of the epidemic.

Ethics and Law

It has become common in the context of HIV policy to talk about ethics and law in the same breath. This is done for obvious reasons because the ethical dilemmas that arise are invariably played out in legal terms. Nonetheless, the blurring of the distinction between law and ethics can sometimes obscure the fact that tensions may exist between ethical imperatives and legal obligations. It is therefore worth considering the interaction between law, ethics and HIV.

We like to think that ethics and law do go hand in hand. As a lawyer, I know that this is not true, and I imagine that most of you do not need a lawyer to tell you that. With some of the very complex dilemmas that arise with HIV -- such as whether to tell the wife of a man with HIV that she is at risk -- the existing law is not a sufficiently subtle mechanism to deal with the problem. Existing legal principles may be inadequate to mediate all the different interests involved and may lead to inappropriate and anomalous results.

The potential inadequacy of existing law does, however, provide us with an opportunity. Because so many of the legal issues thrown up by the HIV epidemic are new, the development of new legal principles and solutions will be required. There is therefore an opportunity to direct the law in the way we want it to go, that is, to have ethics drive law reform and not the other way around. If one takes the case of whether to disclose a man's HIV status to his spouse, for example, the legal principles governing this decision may well be uncertain and any judge called upon to decide the case will almost certainly be less well equipped to arrive at an informed view than those of us in this room today. There is therefore a real possibility that careful and informed ethical debate can guide the direction of the evolution of law in this area. Appropriate ethical guidelines may even mean that the law will not need to become directly involved. At the very least, such guidelines will assist in shaping the law in the best way possible.

The Law as an Instrument of Behaviour Change

My third point is one that I propose tentatively because it is a complex and controversial issue and, in many ways, a dangerous issue. It is, however, an issue that needs to be explored if we are to use the law to its full potential in the response to the HIV epidemic. The point to which I am referring is the notion that the law can be used actively as an instrument to bring about changes in personal behaviour.

In order to understand this point, it is necessary to appreciate the complex interdependence between the law and the society within which it operates. While, on the one level, the law is a product of prevailing social and cultural values within any community, it can also be instrumental in defining, reinforcing and, in some cases, actively promoting certain values and practices. By either condoning or outlawing certain forms of behaviour or expressions of cultural values, the law can be a powerful instrument for shaping or reinforcing these behaviours or values.

I do not want to overstate the extent to which the law can be used to bring about behaviour changes. Certainly, legal coercion has rarely been effective in the past in changing personal behaviour, and there is no reason to think that the HIV epidemic will be any different. It is possible, however, that used in combination with other measures, some forms of legal intervention can be used actively to bring about change.

One example of this is the experience with laws requiring brothel owners to insist upon condom use by their clients. On a practical level, such a law is difficult if not impossible to enforce, and its immediate direct impact is therefore questionable. However, there is some evidence that such a law can assist in encouraging condom use, if only because it makes it easier for prostitutes to insist upon condom use by their clients. The legislation can be an instrument for bringing about behaviour change in this way.

Looking beyond the immediate reach of HIV policy, it is possible also to envisage other ways in which the law could be used, albeit indirectly, to reduce vulnerability to HIV exposure. Where poverty and economic dependency lead to vulnerability to HIV, such as where the sale of sex is a person's only source of income or where women are denied economic rights independently of the family unit, laws that address these issues - for example, through changes to land ownership or credit regulation - may assist other efforts to change the behaviours that spread HIV. Where women are unable to protect themselves against the virus because of their unequal position within relationships, or in communities, laws such as those dealing with rape within marriage and the age of marriage or sexual consent, which uphold the independent rights of women, may increase the options for women in the context of the epidemic.

It is important to explore these creative ways in which the law may be able to be used actively in the response to the HIV epidemic.

Mobilize the Lawyers

The last point I want to leave you with is a critical one. You have to find ways of mobilizing the lawyers in your countries to take up these issues. It is not that there are not lawyers willing to take up social issues such as this. It is just that most lawyers think HIV does not have much to do with them. Or, if they do, they can't see that the law has much to do with HIV. You would be surprised how often I am asked what I, as a lawyer, are doing working in the field of HIV. I know from my own work in this region that if you go and talk to lawyers about HIV, it is very easy to generate interest and enthusiasm. We all need to find ways to tap this resource of lawyers within our own countries. We need to have lawyers who are prepared to argue for appropriate law reform on HIV, to give legal advice to people affected by the epidemic and to take test cases to court where necessary. Only by having an informed group of lawyers can we ensure that the legal issues associated with the epidemic will be tackled properly.

We have had a wonderful response this week to the UNDP proposal to establish an HIV legal network in this region. We need to find ways of carrying on this momentum. We know that the law can be used constructively and positively in the response to the HIV epidemic. What is important at this stage is that we do not waste this opportunity.

ACKNOWLEDGEMENTS

This paper was prepared by Julie Hamblin as a Plenary Presentation to the 2nd International Congress on AIDS in Asia and the Pacific, New Delhi, 8-12 November 1992.

 BIOGRAPHICAL NOTE

Julie Hamblin is a partner with Ebsworth & Ebsworth in Sydney, Australia, and specializes in legal and ethical aspects of health policy. She has worked on HIV law and policy for many years in Australia, North America, Asia, Africa and Eastern Europe and is the author of texts on HIV law in Australia and Canada, as well as articles on a range of other health law issues, including confidentiality and the ethics of health resource allocation. She is a consultant to the United Nations Development Programme on legal, ethical and human rights aspects of the response to the HIV epidemic in developing countries and on HIV and development training and programme planning and evaluation.

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