AIDS: A Guide to the Law

Date: 15 November 1994
Author: The Hon Justice Michael Kirby AC CMG, President, Court of Appeal, Supreme Court of NSW (1984 - 1996)
Type: Book review
Subject: HIV/AIDS
Location: Sydney
Notes: This is a book review by Justice Kirby. Details of the publication are: D. Harris and R. Haigh (eds): AIDS: a guide to the law. i-xiv Frontispiece, Contents, Preface, List of Contributors and Abbreviations; 1-180 Text; 181-187 Appendices; 188-192 Index. Routledge, London and New York, 1990. Paperback, pp 192. RRP AUD$29.95.

BOOK REVIEW

This book was written by eleven lawyers associated with the Terrence Higgins Trust in the United Kingdom. That trust is the major AIDS charity in Britain. The stated purpose of the text is to avoid legal language and to provide a book that will be of help to those engaged in advising people with HIV/AIDS. Thus, it is intended to give an overview of the law as it operates in a number of intensely practical fields affecting people who are, or probably will become, sick.

As befits a book intended as a primer for health and safety officers, social workers, welfare benefits advisers and others, the text concentrates upon the fields of law which are likely to be encountered by ordinary citizens and their advisers in their dealings with health care workers, contact with the social welfare system and dealings with those who provide housing, entitlements in the context of employment, control the position in respect of immigrants, and advise on powers of attorney, wills and probate and insurance. The book also contains a note on the legal structures of the various voluntary organisations which have sprung up in Britain to respond to the AIDS epidemic.

From the point of view of Australian lawyers, the text is of limited value. Similarly, many of the Australian, United States and other texts on AIDS and the law which have appeared in the last decade, would be of little use in Britain in the hard-nosed business of advising on the practical topics listed above. This is acknowledged by Colin d'Eça in his chapter "Medico-legal aspects of AIDS" (Ch 2). Whilst accepting that the law of negligence is common to other jurisdictions, Mr d'Eça expresses the opinion that the case law in such countries "is not particularly helpful". This is because:

"The few decisions made often rely upon specific state legislation outlawing discrimination in the provision of services or other human-rights legislation. In so far as decisions are based solely on common law, it has to be recognized that they are reached in the historical and social context of that jurisdiction. Whether an English court would take the same approach must be a matter for speculation."

Sadly, the list of contributors discloses that Colin d'Eça died in June 1989. He is one of those to whom the book is dedicated. He appears to have been a highly talented medical practitioner before switching to law. He was a founder of the Legal Services Group of the Terrence Higgins Trust.

D'Eça's remark precedes an analysis of the law in the United Kingdom concerning patients' rights in the medical context. Naturally enough, this takes the book into the analysis of the doctrine of "informed consent". Reference is made to the Bolam test and to the House of Lords decision in Sidaway v Governors of Bethlem Royal Hospital [1985] AC 871 (HL). Australian lawyers would have to read all such observation as subject to the rather less paternalistic test pronounced by the High Court of Australian in Rogers v Whitaker (1992) 175 CLR 479. Canadians would have to read this section with a full appreciation of the rights of a Canadian patient to expect that their "informed consent" would be secured for medical procedures. See Reibl v Hughes [1980] 2 SCR 880. There is a world of difference in both the common and statutory law as it affects the rights of people living with HIV/AIDS in Britain and in the countries whose legal culture is derived from Britain. These differences permeate every chapter of this book.

But it is not simply the difference in attitude and in the assertion of rights that limits the utility of this text to a lawyer outside Britain. The whole point of the text is to collect the statutes, subordinate legislation and administrative practices of the United Kingdom which affect people living with HIV/AIDS and their carers and families. Necessarily, any such statutory analysis is going to be of limited utility outside the jurisdiction in which the statutes apply.

The book begins with a good general description of the modes of transmission of HIV. It states that, at the beginning of 1989, there were between 60,000 and 100,000 people infected with HIV in the United Kingdom. Only 2,000 people have been diagnosed with AIDS, often the end stage of the HIV infection. About seventy percent of people living with AIDS live in London. Most are homosexual or bisexual men. Outside London, a high level of infection with HIV exists in Edinburgh, principally among the drug-injecting population. The book records the importance of preventing discrimination and the need for more effective laws and policies in the United Kingdom to redress prejudice. The impact of a diagnosis of HIV positive status upon the legal rights of the patient are described. Many aspects of "normal" life are immediately affected. Any long-term commitment has to be re-considered: such as buying a house, changing jobs, going on holidays.

In the section on social welfare law, there is a thorough analysis of the system of income support and supplementary benefits operating in the United Kingdom. The special difficulties of housing for people with dementia (a by-product of HIV/AIDS in some cases) are analysed by reference to the various social security benefits available. Something of the flavour of English social security law can be seen in the fact that the Social Security Act 1986 (UK) reintroduced the provision of "less eligibility" which was a relic of the Poor Law Amendment Act 1834 (UK). However, it is doubtless reassuring to know that funeral benefits are available out of the Social Fund, a system administered by the local Department of Social Security officers who are given wide discretionary powers. Payment can cover "the reasonable cost of flowers" and "fees and gratuities" to undertakers. There are also special benefits available for cold weather. The detail of Australia's social security system is significantly different.

The chapter on housing law traces rights to public housing, the rights of the homeless, protection from harassment and rights in private rented accommodation. Useful advice is given on ways to handle mortgage problems, including joint mortgages.

In the field of employment, there is a developed law, forbidding wrongful and unfair dismissal. The practice of seeking an HIV test for job applicants, led to a proceeding against the airline Dan-Air, by the Equal Opportunities Commission. Dan-Air's policy of recruiting only women, was justified by it as being designed to prevent cross-infection of passengers with HIV. The EOC was not impressed, for the evidence showed that there was no realistic health risk to passengers. The writers express the view that discrimination against people with AIDS or HIV, haemophiliacs or homosexual men, might be unlawful sex discrimination under existing equal opportunity legislation, as most people with AIDS or HIV are male. Nevertheless, one of the appendices to the book is a draft Bill for a new Employment Protection Act. This was not advanced in Parliament, apparently, because the relevant government department said that there was no need for it. Sir Humphrey still rules in Westminster, it seems.

The chapter on immigration describes procedures for challenging immigration decisions. There appears to be little evidence of discrimination in this area on the basis of HIV status.

The chapter on powers of attorney, wills and probate, covers territory more familiar to an Australian lawyer. But, even here, local legislation in at least some parts of Australia would appear to give better rights and financial protection to the surviving domestic partner of a person who has died of AIDS. But the cases cited certainly emphasise the need for professional assistance in the drafting of a will where the estate is of a size to warrant it.

The chapter on insurance contrasts the pressures of the Thatcher Government to shift health care to the private sector with the reluctance to use regulatory powers to ensure that private insurers perform their functions adequately and without discrimination. Because of similar policies among insurers in Australia, as in England, some of the practical advice given in the text here has application.

The text concludes with a description of voluntary organisations and how to set them up. This seems a trifle remote from the specific HIV/AIDS focus of the earlier chapters. But it is doubtless included because of the perceived need of voluntary "help lines" and other groups to provide assistance and support for people during the long incubation period of HIV where public authorities fall down.

One emerges from this book with a sense of despondency. This is not so much because of the exhausting character of HIV/AIDS and its impact, mainly on young people. Still less is it because of the things that can be done. The Terrence Higgins Trust, like its equivalents in Australia, motivates large numbers of helpers, many of them lawyers, to assist their fellow citizens to continue life as normal as possible despite a positive HIV test.

What is discouraging is the highly regulated nature of United Kingdom social welfare, housing and employment laws, and the comparative absence of the spirit of rights. Rights, and their assertion, play a much larger part in the legal regimes of Australians, New Zealanders, Canadians and Americans. Reading the chapters of this book, one gets the impression of a tired and rather judgmental society, with minimal statutory handouts to the sick and disadvantaged. As that is the legal regime that exists, it is no criticism of the authors that they describe it. But one cannot but have admiration for those, in the Terrence Higgins Trust and elsewhere, who struggle against the attitudes that have informed the legal regime outlined in this book. Whilst the recent report of the Anti-Discrimination Board of New South Wales, Discrimination - The Other Epidemic, disclosed that there are many similar faults in law and practice in Australia, we seem to have done rather better. In part, this may be because our citizens are more inclined to stand up for our rights, use the media and bang the table. In part, it may be because our politicians and the media have listened.

AIDS is universal. Law is local. Out of these truisms, we can nonetheless often learn from the study of the comparison of the ways in which this shared catastrophe is being addressed by the law in different jurisdictions. I came away from a study of this book with the feeling that Australian law has little to learn from the United Kingdom in its legal response to HIV/AIDS. Which is itself a sad reflection when one thinks that it is English law which has spawned the legal regimes that flourish in the aftermath of Empire and still govern a quarter of humanity.

M.D. KIRBY