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AIDS - Have we got it Right?

A conference organised by THE AUSTRALIAN DOCTORS FUND LTD.
Hosted by PROFESSOR FRED HOLLOWS & ADF Chairman Dr. BRUCE SHEPHERD

Sheraton Sydney Airport Hilton May 14th and 15th, 1992

Papers included in this file

The Real Challenge: Not, "Have We Got it Right' but, "How Can We Do it Better"

Address by Don Baxter
Secretary, Australian Federation of AIDS Organizations
to the Australian Doctors Fund meeting

Conference Paper: AIDS - Have we got it Right?
A conference organised by The Australian Doctors Fund Ltd.
Hosted by Professor Fred Hollows & ADF Chairman Dr. Bruce Shepherd
Sheraton Sydney Airport Hilton
May 14th and 15th, 1992

My name is Don Baxter. I am speaking to you today in the capacity of Secretary of the Australian Federation of AIDS Organisations. AFAO is the national peak body of community based organisations, representing gay men, injecting drug users, sex workers and people with HIV/AIDS.

I have three tasks in my paper, speaking from the perspective of HIV/AIDS community organization:


1. The Context and the Challenge

Community AIDS organisations are both bemused and wearied by the periodic outbursts of criticism of both the National HIV/AIDS strategy and of our work.

Professor Hollows may think he is novel or unique in raising the issues he has. From our point of view it is only another in a long series of public figures coming to terms with the complexities - and the paradoxes - of HIV/AIDS. We have one every six to nine-months.

Not infrequently sparked by a close personal involvement, these outbursts characteristically start with a fierce public attack including intemperate attacks on people with HIV/AIDS and calls for a nebulous set of strongly coercive measures to "restore public health". This is followed by a strategic withdrawal as the proponent realises the complexities of the issues involved, and that the strategies they have been proposing may have the opposite effect to that intended. Careful reading of Professor Hollows article in Tuesday's Sydney Morning Herald suggests reality is beginning to set in here also.

Such critical outbursts have sometimes become confused by the intervention of other political agendas. And this has been the case with Professor Hollows. This "AIDS Summit", I note, happens to coincide with an election for the Presidency of the A.H.A. - as indeed, I note, did the last AIDS Summit.

Underlying the current media storm - well, The Australian newspaper would have us believe it's a storm; the rest of the media seem to think its an autumn shower - is a deeper debate: whether "control" of HIV/AIDS strategy should return to what are called the "traditional public health models", or whether the "New public health" model, embodied in the Ottawa Charter principles, should continue to fashion our response to the AIDS epidemic.

One of the characteristics of proponents of the "traditional" school, and of current critics of the National Strategy, is a failure to provide any sort of detailed alternative strategy: to say what they think we should actually do, to allow public discussion and scrutiny of what the alternative strategy they have in mind.

The challenge to the organiser's of this Conference, then, goes beyond merely criticising the current strategy. Public health policy is not something that you can take or leave. The effect of criticism without proposing an alternative is to create confusion and undermine public confidence in public policy. This is both mischievous, and potentially dangerous when we are dealing with a fatal infection.

I am not saying AIDS strategy should not be debated; I am saying critics of current policy bear a responsibility to propose alternatives, to put them up for critical discussion and examination, to fully evaluate their unintended consequences as well as the intended ones, to conduct debate in forums less erratic than newspaper headlines and radio talk-back shows.

This challenge has not been met by critics in the past. We've had carping and whingeing, grandstanding and posturing, but precious little alternative policy or strategy proposed.

The challenge to this summit Is not "Have We Got It Right", but "How Can We Do It Better?" I trust the organisers will ensure alternative proposals to the current strategy will be fully debated at this meeting.


2. The Community Response to HIV/AIDS

Much of the responsibility for the success of Australia's response to the AIDS epidemic lies with the most affected communities - the gay community, sex workers, injection drug users, people with HIV/AIDS, and people with haemophilia.

That success is not merely an unsubstantiated claim: it is measurable in reduced or minimal infection rates in the various communities, in productive years of life saved, and in dollars in care, support and education spending saved through massive mobilization of volunteer effort.

Transmission prevention information and education began in the gay community from 1982, particularly by the gay media and the fledgling, all-voluntary AIDS organisations. Government funding did not begin until 1985. As Professor Kaldor's date demonstrate, infection rates among gay men have plunged, an issue I will return to in more detail shortly.

The Australian Prostitutes Collective early work ensured condom use became standard throughout most of the industry, with no infections from wax workers documented in Australia.

The first needle and syringe exchange programs were initiated through ADIC, the Australian Drug Information Collective, a community-based group. Subsequent expansion of this program, combined with community education about cleaning needles, have lead to Australia's remarkably low incidence among users to date.

Thus most of the groundwork in both prevention and policy was laid down by community organisations in the key early years of the epidemic. Australia was then fortunate to have political leadership which recognised early the key role to be played by these communities and organisations, to recognise the need for pragmatic measures rather then moralistic or ideological ones, and to build a tripartite partnership between the government, the medical profession and the community organizations.

While no health education campaigns expect to be 100 percent effective some comparisons with campaigns involving other life-threatening situations are instructive. Anti-smoking campaigns rate - a 2% decline in smoking per annum as a success. Road safety campaigns have reduced road deaths by 50% over ten years. If HIV prevention programs had been only as successful as these the outcome would have been disastrous.

And in considering appropriate strategies and policies let us continually remind ourselves of just who we are talking mostly about, of some of the key characteristics of people most affected. For their different reasons, gay men, injection drug users and sex workers have deep suspicion of government authorities (and this includes the health system). Members of each group have highly developed strategies for avoiding, disguising or subverting their interactions with mainstream agencies.

This is one of the particular challenges AIDS brings. It is one of the challenges I referred to earlier: one of the challenges that critics of current policy need to have an answer for in their proposals for alternative strategies, in, for example, mass testing of particular populations.

The mobilisation of the affected communities has not only saved many lives - and many productive work life years but has also provided millions of dollars of volunteer labour in caring for the ill, supporting the infected, and educating the community. As a snapshot, the Community Support Network, working through my organisation, the AIDS Council of NSW, currently cares for more than 100 people with AIDS in their homes. If this volunteer force did not exist about 60 of these people would require hospital beds immediately. But NSW has only 68 funded AIDS beds already full; the system would collapse without this volunteer effort.

Another challenge for the critics who want to return to "traditional" public health models of handling this disease.

3. "Gay Lobby Hijacking the debate"

Let me now turn to some more specific issues raised in the recent media coverage - or perhaps trotted out again would be a more accurate description.

First, the classic conspiracy theory, the gay lobby has hijacked the debate.

The great thing about conspiracy theories is that they allow you to ignore inconvenient facts and to disguise less then honourable motives. I find they are resorted to when the proponent doesn't like the policy but cannot explain why - if, for instance, they just don't like homosexual men having a contribution to any government policy.

Let me confirm immediately that gay men do have significant input to and influence on HIV/AIDS policy development.

Given the pattern of the epidemic in Australia, and particularly the development of expertise about the epidemic, it would have been short-sighted - indeed I believe, culpable, if the government had not ensured significant input from gay men. The U.S. government did not, to its great cost.

To dispute that gay men should have appropriate input would be the equivalent of disputing any role for the College of General Practitioners (RACGP) in the current policy changes on general practice, to deny businessmen any role in developing export trade policy. As in those cases, it would guarantee failure of the policy.

BUT, while our input and influence may be significant, but it is far from control or "hijacking". Accusations of "hijacking" simply ignore the facts of AIDS policy-making. Contrary to the impression often suggested, all major government policy-making bodies in the country have a majority of medical and public health background people, with a small minority of openly gay men - or none at all.

Our ability to "hijack" the debate, then, implies we must have some supernatural powers of persuasion. Much as we might occasionally wish it were the case, it is not. In my five years on the Australian National Council on AIDS all that I and my one gay colleague had to persuade the other thirteen members were facts and logic; interestingly enough, the came facts and logic that persuaded the World Health Organisation to adopt very similar model policies. Perhaps the conspiracy theorists believe we "hijacked" the WHO too.

Such accusations are also, of course, a cress insult to the medical, research and public health professionals who serve on the policy-making bodies. implying as it does that they are simply dupes of a few gay men.

And just for those who are only persuaded by statistics, let me list three significant decisions in NSW last year in which the gay community's view was not adopted: amendments to the Public Health Act; Blood Transfusion Service access to the AIDS database; and financial assistance to people with medically acquired HIV.

The "Balance" between Public Health and Civil Rights

A variant of the 'hijacking" accusation alleges gay men have over-emphasised "civil rights" at the expense of public health. The implication is that there is some simple see-saw: one can emphasize either one or the other and so "tip the balance".

If only it were so simple. HIV/AIDS has clarified some of the complexity of the inter-action of the coercive responses of the state and desirable public health outcomes. Perhaps this is best encapsulated in the phrase sometimes heard in my community "civil rights are not much use if you or your friends are dead."

While this is a somewhat facile response it reveals the challenge which faced us as a community confronting the epidemic in the early years.

The experience of the epidemic has in fact demonstrated what at first appears a paradox: that the careful protection of the rights of those most at risk advances the best public health outcomes - not jeopardises, advances, the public health.

Justice Michael Kirby has analysed this relationship in detail eruditely on a number of occasions: the relationship between desirable public health outcomes and coercive responses of the state is far more intricate one - replete with unintended consequences - than any simple see-saw notion.

Though it was not obvious at first our experience in the gay community is that sound public health outcomes and the rights of citizens in fact work hand-in-hand.

Again, I issue a challenge: I challenge the critics who raise this allegation to demonstrate a single measure that we have proposed which is based only on civil rights issues, and not on desirable public health outcomes.

And where they are proposing coercive measures I challenge them to demonstrate that the public health outcome will not be jeopardised by the fear and loss of co-operation their measures will engender among the stigmatised groups.

Heterosexual Transmission and the Aboriginal Community

Another variant of the 'gay lobby' conspiracy theory has us "emphasising heterosexual transmission to take the heat off" the gay community. Such a strategy would seem dangerously short-sighted in itself, an it would condemn the gay community to small share of the funding pie.

In the early years of the epidemic we did emphasize the risks of heterosexual transmission because then - as now - that remains the greatest potential for HIV transmission in this country. Potential. We were not to know then that our containment policies would be so successful in preventing that potential being realised.

We continue to remind people about heterosexual transmission for several reasons. First, we see some of the results: as Gabrielle McCarthy will attest tomorrow, the disjunction between a public media discourse amounting to denial that heterosexual people are at any risk, and the experience of being infected with HIV, is both personally devastating for the heterosexual women and men involved, and secondly, it reinforces the potential for a public health disaster, however far in the future.

The potential risk of heterosexual transmission is not evenly distributed through the general population. But pretending that because the risk of transmission is very low for a suburban mother of three or ageing newspaper columnist that it is therefore low for all heterosexuals facilitates the denial and complacency that will allow a public health disaster to develop.

Ironically, the potential for this disaster is no more easily seen than in the very community Professor Hollows most wants to protect. The gay community has always been concerned that the social, health, economic and political conditions forced on Aboriginal people would make their communities particularly vulnerable to the spread of HIV.

Denial of risk is a powerful barrier in communities coming to terms with HIV/AIDS. Unfortunately the outbursts by Professor Hollows and associates implying heterosexual transmission is a relatively low - or oven non-existent - risk plays into the hands of those in the aboriginal community - mostly men - who do not wish their communities to acknowledge the need for change. It facilitates their rationale that HIV/AIDS is only gay white man's disease and therefore they do not need to modify their behaviour and their community norms.

The lesson from Australia's HIV/AIDS experience is that each community must work out how it can respond effectively to the epidemic. Despite the mis-timed interventions over the last months I believe there is considerable hope that a catastrophe can still be averted in the Aboriginal communities. This hope arises from the Aboriginal HIV/AIDS conference in Alice Springs, where substantial progress was made by the Aboriginal community leaders, including, I note, rejecting most of the strategies proposed by Professor Hollows.

Evaluation of Community Organisation Programs

Doubts have been raised in the press about the evaluation of HIV/AIDS education programs, with veiled implications that, among others, community organisations are simply churning out programs to justify their existence rather than based on their need and effectiveness.

Given the relative difficulty of evaluating individual health education programs, and the simplistic understanding many people (particularly in the medical field) have of this process, it is not surprising that doubts can easily be raised.

Rather than less evaluation, I believe community HIV/AIDS organisations bear an inwardly driven imperative for effective evaluation, a much more direct accountability for the success of our programs: failure means our friends become infected and probably die.

Our tasks will always feel greater than our resources; there is therefore enormous pressure to stretch our limited dollars as far an they can go, we must ensure that every scarce dollar is well-spent. As community organisations we have both memberships and communities monitoring our programs far more closely and directly than the monitoring of government agencies.

While we would have preferred more large-scale impact evaluation in the gay community - we argued for the 1992 SMASH (Sydney Men and Sexual Health) to begin in 1990 the situation is not as bereft of independent evaluation as has been suggested.

Let me briefly list the external evaluations on programs conducted or in process with bearing on the programs for men who have sex with men which my own organisation, the AIDS Council of NSW conducts:

As all of these have been discussed at various policy-making bodies, and details are easily obtainable on request, I am surprised at an apparent lack of knowledge of them among people working in the AIDS area, particularly those making public comment.

New Infections in the Gay Community

Everyone would like to have a clear picture of the rate and circumstances of new infections in the gay community. No-one has a more vested interest in establishing this than the AIDS Councils, so we could ensure better planning, targeting and content of our education programs.

Professor Kaldor's National HIV Projections Working Group has referred to the difficulties of closely monitoring new HIV infections in the affected communities, and noted the limitations of the back-projection technique in estimating new infections in recent years.

There have been suggestions - again, one cannot really call them proposals - for more HIV testing among gay men, even to hints of compulsory screening. The reality of discrimination and homophobic ensure that any attempt at coercing testing of particular stigmatised populations will have a counter-productive effect. It is in nobody's interests to see a repeat of the emptying out of clinic waiting rooms brought on by the Wren amendments in NSW.

Given the constrictions on obtaining hard data on current patterns of HIV infection, and ACON's direct interest in as detailed knowledge as possible, we obtain qualitative and indirect data where we can. Part of the planning for our annual campaign includes an extensive round of consultations with all Sydney general practitioners and clinics with large gay clienteles to establish qualitative data on HIV incidence and patterns of behaviour involved in particular instances.

From this exercise, analysed in the light of the 46 documented seroconversions in NSW in 1991, we believe the back-projection estimate of 600 new infections nationally is probably too high by one or two hundred. Our working estimate for new infections in Sydney is between two and three hundred per annum.

The Realities of the Epidemic: The Real Challenge

300 hundred new infections is 300 too many in anyone's view.

But when the realities of the epidemic are borne in mind perhaps it is not so surprising.

The largest pool of infection is in a community where up to 25% of its members, most relatively young men, are dying. The last time such intense grief happened in Australia was in country towns during World War I. We built memorials everywhere and took twenty years to recover.

Sustaining safe sex every time, maintaining hope and rebuilding self-esteem after each death are not simple, single steps; they are ongoing, apparently never-ending, processes.

Maintaining the co-operation of people with HIV is essential, both for their own health, and to assist prevent further infection. Yet these very people are publicly accused of "recklessly spreading" the virus. Only this week a South Australian HIV+ man was barred from a job - on the basis of an anonymous fax, sent apparently by a Member of Parliament! Is this the way to encourage people to be tested.

To a large degree the welfare of society depends on HIV-infected individuals ability to maintain behaviour changes which are socially responsible yet which are, on a personal level and to varying degrees, a sacrifice. In order to assist this ability it is essential that people feel free of stigma and confident of support.

This is perhaps the greatest challenge to all HIV/AIDS policies and strategies, particularly those of the "traditional" public health, and of this "Summit" to address.

Don Baxter
Executive Director
AIDS Council of NSW
12 May 1992

Surveillance of H.I.V.
Speech given by Professor Sydney Bell, Medical Director Eastpath at Prince Henry and Prince of Wales Hospitals - Sydney

Conference Paper: AIDS - Have we got it Right?
A conference organised by The Australian Doctors Fund Ltd.
Hosted by Professor Fred Hollows & ADF Chairman Dr. Bruce Shepherd
Sheraton Sydney Airport Hilton
May 14th and 15th, 1992

Introduction
Slide 1:
The differences in the epidemiology of H.I.V. infection in different populations throughout the world makes it imperative that we collect accurate local data. Just before I go into how well we are collecting information on H.I.V. infections in this city I would like to give an example of the difference in epidemiology of the disease in our society to that in other western societies.

Slide 2:
This table compares the H.I.V. positivity rate in prisoners in New York city and in N.S.W. Male prisoners in New York have a positivity rate of more than thirty times that of N.S.W. prisoners and female prisoners in New York city are eighty times more likely to be H.I.V. positive than they are in N.S.W. These major differences illustrate why we can't rely on overseas data alone to base our public health action against this disease. We must get local knowledge.

Now I would like to explore how we have been collecting this information and how well we have been doing it.

Slide 3:
This chart shows how information on new diagnoses of H.I.V. is collected. Laboratories are the sole source of notification of this disease and have been for the last seven years. The attending doctor has played almost no part in the notification process and in the new Public Health Act, at present, a medical practitioner does not have any obligation to notify H.I.V. The clinical details of patients where the diagnosis of a new case of H.I.V. infection has been made are collected exclusively by the four reference laboratories in H.I.V. testing. (In fact there are three reference laboratories and another laboratory which does its own confirmatory testing). Each of these laboratories sorts its positive results into new and old cases and records information such as age, sex, exposure category and clinical status before passing this information on to the N.S.W. Health Department. The Health Department accumulates this information and I am told that, up to the present, it is unable and does not attempt to clean up these data any further. The Health Department then passes on the same information to the National Center in H.I.V. Epidemiology and Clinical Research. As far as I am aware all of the information regarding the new diagnoses of H.I.V., including case numbers, is as is determined by the four laboratories. It is not modified in any way by the Health Department and although the National Centre receives some information from other sources, for example, its S.T.D. Clinic surveillance, I think this is separate to the National database - perhaps Dr. Kaldor, could expand on this.

Therefore if the source of N.S.W. data on new diagnoses is these four laboratories it seemed to me it would be worthwhile to look at the quality of the data they receive. It would have a significant effect on the quality of data being circulated on a national basis. I was able to obtain from one of the reference laboratories information on their last years positive results, which approximated 200, and I also examined 200 requests for H.I.V. testing - essentially the quality of the information supplied in the two groups was the same.

Slide 4
Before going on any further I need to tell you how laboratories collect the data. It is by way of a uniform request form for H.I.V. testing and this is what it looks like. It was agreed that the four laboratories would use this form and it is from this form alone that the information is extracted by the laboratory and sent to the Health Department. There is no need to attempt to read the details of the form; as we go along I will extract the appropriate section and enlarge it for you.

As you would expect these forms are completed with varying degrees of thoroughness. I was going to show a blank form but picked up this one in error - it is nearly blank.

Most forms are filled in a little better than this one. It has only the laboratory code, and I have obscured it for privacy sake, and a signature which does not need to be obscured to protect the privacy of its owner.

Slide 5
Also, before examining in detail the data from this laboratory we need to understand how laboratories define a new diagnosis. This slide details this definition, i.e., it is a positive test where the request form does not indicate that a patient had previously tested as positive and there probably should be and an oblique before the or so that it is and/or - - - or there is not a positive result for that patient in the laboratory's records.

Slide 6
For today's purposes the first part of the request form which we are interested in is that which indicates previous H.I.V. testing and the results. There are two ways that you can fail to respond to this question: you can either neglect to tick any box or else indicate that the test has been done but failed to give a result. Both of these answers are equally unhelpful.

Slide 7
Thirty-six Percent (36%) of all request forms failed to indicate that the patient had been tested or else the result of a previous testing was not included. Therefore, in 36% of cases reported as new to the State positives it was not known whether a previous positive test was recorded in another laboratory. They weren't on this particular reference laboratory's file but it is not indicated that they had tested positive elsewhere.

Slide 8
Going back to the definition - The 36% where there is an inadequate description of previous testing would have to be in this part of the definition, i.e., no previous positive test reported because this is the only source the laboratory has to obtain this information. The second parameter used to define a new diagnosis is where the patient is in the laboratory's record as a positive result. This can also present problems.

Slide 9
This is the part of the request form which the laboratory uses to determine if the patient is on their records - the patient code or identifier.

Slide 10
To locate the patient in their records the laboratory needs to be supplied with a unique identifier and they get this in just over half the request forms - 53% in fact. The unique identifier is derived from the patients name, and provided that the patient uses the same name at each attendance, this identifier allows a match in the laboratory records. In another 27% of cases a public clinic medical record number was supplied. This is an identifiable number if the patient has always attended and continues to attend that particular clinic but not if the patient attends, or will attend, another clinic or a private practitioner. So it has a limited value in the laboratory in preventing double counting if we consider the state as a whole. Twenty percent (20%) of the forms simply included a laboratory number of a referring laboratory. This number is of no value to the reference laboratory because it changes each time the patient is tested and will be regarded each time as a new patient.

The four laboratories have no access to each others files therefore they have considerable difficulty in defining in many cues what is a new diagnosis and there is considerable scope for inaccuracy in the number reported using the present method.

Slides 11
The next three slides show four other fields for which laboratories attempt to collect information. In this extract of the request form is the space for noting the patients post code and the patient's sex.

Slide 12
In the next slide is a field where it only requires a box to be marked, indicating the mode of infection. The mode of infection is split up into those which are well known to all of you here.

Slide 13
The third slide defines the clinical status of the patient: again, all that is required is a tick. If the requesting practitioners want to they can add details of other clinical status or add some comment.

Slide 14
This slide analyses the data in each of those fields on the previous slide and shows that the laboratory also had difficulty in obtaining accurate information in each case. Fifty-six percent (56%) of the request forms failed to include the post code of the patient and at the other end, 16% of the forms did not even indicate the patients sex. The mode of infection, which is clearly a most crucial piece of information, was not indicated in 46% of patients. Almost the same number failed to give any indication of the clinical status of the patient. I would like to emphasise again that the request form is the only source of all the information which is collected on H.I.V. infection and if this information is not supplied on the request form it will absent from the accumulated national data.

Slide 15
I accept that with sexually transmitted diseases for one reason or another we have always had problems in collecting accurate data but these are nothing compared with those associated with getting accurate information on the results of H.I.V. testing. This is despite the expenditure of a lot of money over seven years and the restriction of H.I.V. testing to a small number of laboratories. I don't know if anybody has the answer or how to get surveillance right - I don't but I have a few constructive criticisms.

In the first place I would argue that we need to simplify the system of collecting data. In the past there has been an idea that we must adopt a high tech approach to the collection of information on H.I.V. As a result there has been a preoccupation with computers - should we be using a mainframe with custom made software or PC's with C.R.S. or with clipper. When we consider that the annual number of new patients works out at 3-1/2 per lab per week and there are only seven fields to be completed I suggest that we may be better off with less sophisticated methods of number crunching.

It is my view that another mistake we have made is not to involve the attending doctor in the notification process. The failure to make this disease a doctor notifiable one underestimates the concern generally expressed by members of the medical profession and it hasn't helped in collecting accurate information on this disease.

If strict privacy is a condition of acceptability of the surveillance system then for the system to work this privacy must be observed. However, it is the identity which must be kept secret, not the details of the disease nor the method of acquisition of the infection. We should try to get rid of the mystery which quite frequently cloaks oven the anonymous case.

I am not sure how to persuade more people who are undertaking risk activities to have their H.I.V. status tested. Others who are more expert in this area than I am probably would know how to do this but I have not seen a lot of evidence of activity in this area. For example: I haven't seen much publicity given to the fact that H.I.V. testing is free, is freely available and performed with the highest standards of accuracy and reproducibility. Just on this point I must emphasise that my criticisms are not aimed at testing itself but rather what is done with the results. In fact the actual performance of H.I.V. testing is one of the few things we've got right in the AIDS saga. Perhaps one way of achieving a greater compliance with testing and with the supply of information is if both doctors and the patients were presented with a more accurate picture of the epidemiology of this disease in our own city.

Mr. Chairman - If we can get H.I.V. surveillance right then it follows that planning and predictions we hear so much about will be much more soundly based than they are at present.

Dr Chris Brook
Chair of the Inter-Governmental Committee on AIDS (IGCA)
May 1992

Conference Paper: AIDS - Have we got it Right?
A conference organised by The Australian Doctors Fund Ltd.
Hosted by Professor Fred Hollows & ADF Chairman Dr. Bruce Shepherd
Sheraton Sydney Airport Hilton
May 14th and 15th, 1992

I have 20 minutes to describe to you Australia's response to the HIV epidemic and in particular the National HIV/AIDS strategy.

I speak as the independent Chair of the Inter-Governmental Committee on AIDS - IGCA. IGCA is comprised of senior medical, program management and financial representatives of State and Territory Health Departments and the Commonwealth Department of Health, Housing and Community Services. IGCA is responsible for the co-ordination, implementation and accountability for the National Strategy. IGCA also provides a national forum for information sharing and provides policy advice on a range of issues to its own constituents, to the Commonwealth Department, to other national bodies such as the National Health and Medical Research Council. It has a specific brief, with the Standing Committee of Attorneys General to provide advice on law reform in the context of HIV/AIDS. IGCA is represented on, contributes to and works in parallel to the Australian National Council on AIDS - ANCA. ANCA is the prime Commonwealth advisory body on all matters concerning HIV/AIDS policy in Australia. ANCA is an independent body which reports directly to the Commonwealth Minister for Health, Housing and Community Services. Given concern about "AIDS Bureaucracies" I am compelled to point out that IGCA meets four times per year, for one day meetings only, as far as is possible in eastern seabord States.

The HIV epidemic is unparalleled in recent human history. This is primarily because it is an incurable infectious disease in a world which has become accustomed to the ready availability and efficacy of antibiotic cures for bacterial infectious disease and vaccines for most viral diseases. There is no vaccine currently available, nor on the immediate horizon, for HIV. HIV also differs from most viral diseases in that ft is believed to result in serious illness and death in all infected people after a variable but protracted latent period - currently thought to average ten years.

The HIV epidemic is unparalleled in its potential impact on individuals, society broadly and in its economic consequences.

The HIV epidemic is also unparalleled in recent history in engendering fear, misconception and deliberate distortion.

The HIV epidemic is as well unparalleled in terms of response.

The National Strategy is a unique amalgam of: ensuring adequate treatment services; protecting the blood supply; minimising the risk of occupational hazard; educating those at risk and society generally; adopting wide scale prevention programs such as Needle and Syringe Exchange for IDUs; provoking consideration of a range of ethical issues - such as informed consent in health care; provoking unprecedented consideration of discrimination and its negative impact on disease control; and last, but by no means least, mobilising affected communities to undertake education and prevention programs and to provide a vast array of personal support and care services on a voluntary basis. Not only does this latter have substantial economic benefit, but to see the level and nature of care and support to terminally ill people, often previously unknown to the volunteer care giver, is a profoundly morally uplifting experience.

The HIV epidemic has led to dramatic advances: in the science of virology; in the discovery and application of anti-viral agents; in infectious disease treatment services generally; in the application of infectious control procedures and in reforming the timely availability of new drug therapies into the Australian Health Care System.

The first AIDS cases were identified in 1981. The first case in Australia was diagnosed in December 1982. The causative viral agent was identified in 1983 and a generally applicable antibody test became available in 1985.

Several major sets of activities took place in the early to mid 1980s.

From the outset therefore, there was contemporaneous development of: medical/hospital and community based care and treatment services; research; public health policies; epidemiology; and both public health and community based education and prevention programs.

By 1985 a Commonwealth/State matched funding program had developed, a National Media Campaign commenced and vital infrastructure such as the National Centre in Virology and the National Centre in HIV Epidemiology and Clinical Research - at that time Special Units of NH&MRC - had begun to develop.

In 1988 the Commonwealth developed a comprehensive discussion document - "AIDS: A Time to Care, A Time to Act - Towards a Strategy for Australians". After an extensive consultative process a final policy document - the National HIV/AIDS Strategy - was endorsed by Federal Cabinet in August 1989. That policy document was endorsed by all State and Territory Governments.

If there are people here today who have not read the policy paper - then I suggest you do. Although dated in parts, it is generally as relevant today as it was three years ago. Copies will be made available to you on request.

The National Strategy provides an overall policy framework, identifies actions to be undertaken and provides a funding process to achieve those aims.

The twin goals of the National Strategy are :

There are ten guiding principles underpinning the Strategy. These are:

  1. Transmission of HIV is preventable through changes in individual behaviour; education and prevention programs are necessary to bring about such changes.
     
  2. Each person must accept responsibility for preventing themselves becoming infected through sexual intercourse or the sharing of needles and for preventing further transmission of the virus.
     
  3. The community as a whole has the right to appropriate protection against infection.
     
  4. The law should complement and assist education and other public health measures.
     
  5. Public health objectives will be most effectively realised if the co-operation of people with HIV infection and those most at risk is maintained.
     
  6. Specific informed consent should be obtained before any test is performed to diagnose a person's HIV infection status. The result should remain confidential, and appropriate pre and post-test counselling should be provided.
     
  7. People infected with HIV retain the right to participate in the community without discrimination, and have the same rights to comprehensive and appropriate health care, income support and community services as other members of the community.
     
  8. Professional care-givers have a duty to care for infected individuals; governments, employers and unions have a responsibility to provide working conditions and training programs which minimise the risk of occupational transmission.
     
  9. Research into the epidemic is essential to the management of the epidemic.
     
  10. General principles of public health, service provision and. the legal system should be applied to the HIV epidemic; special measures or services require justification.

The Strategy is one characterised by a partnership approach. Partnership between the Commonwealth and the States; Partnership between Treatment Services, Researchers, Public Health Authorities and Community Groups; Partnership between Education and Prevention - and Treatment Services. It was among the first National AIDS Strategies in the world. In contrast, the USA still does not have a National AIDS Strategy. The Australian Strategy was not only endorsed by the WHO but it, and more importantly the people involved in it, have been used by GPA - the Global Program on AIDS - as a source and reference for development of National AIDS Strategies elsewhere.

The components of the National Strategy are most easily described by program. The next two overheads detail the Programs and expenditure against those programs for the 1990/91 financial year. A total of $318.5 million was allocated over five financial years in the National Strategy. When matched funding and State own funding is taken into account, that figure grows perhaps to $450 million. Current estimates are that 80% is spent on treatment, testing and care, 20% is spent on education and prevention.

These programs are as follows:

CARG -The Commonwealth AIDS Research Program (CARG)
This program comprises grants to individuals and organisations for specific HIV/AIDS related research, including support for training new researchers. The national Centres in Virology, Epidemiology and Clinical Research, and Social Research are also funded from this program.

CAPE - The Commonwealth AIDS Prevention and Education Program
This program funds nationally relevant prevention and education programs developed by community-based organisations for priority groups.

The CAPE program enables the development of a balanced and integrated prevention program, and supports innovative programs of peer education for particular target populations. Priorities for grants reflect the priorities for education and prevention programs in the National HIV/AIDS Strategy. CAPE funds are provided to supplement activities funded under the Matched Funding Program and to fill identified "gaps".

CAWISE - The Commonwealth AIDS Workforce Information, Standards and Exchange Program
The CAWISE Program addresses the need to ensure that the workforce has access to information and resource materials, retaining skills development programs and development of guidelines and standards. Priority is given to those working in occupations affected by HIV, including health-care and legal workers.

The program is designed to ensure an adequate, knowledge and skills base among workers in occupations associated with HIV; to minimise occupational transmission and address concerns associated with workplace activities; and to ensure that work quality, productivity and effectiveness are not adversely affected. Like the CAPE program CAWISE funding is provided to supplement Matched Funded Activities.

The National Media Campaign on HIV
The purpose of the National Media Campaign on HIV is to deliver educational messages widely to all Australians. The first component of the Campaign is directed at the general community. It is designed to present and explain policies required to manage the epidemic and to reassure the community about modes of transmission and to allay fears and prejudices about living and working with HIV.

The second component of the National Campaign addresses the educational needs of specific groups, which might not otherwise be met through community-based grant schemes, including women, people of NESB, non-dependent injecting drug users, bisexual men, men who have sex with men.

Other Funded Activities
The Commonwealth also funds the National HIV Reference Laboratory and the core activities of the Australian Federation of AIDS Organisations (AFAO) and of the Haemophilia Foundation of Australia.

The remainder of the Strategy is administered by the States. States have access to five funding sources.

EPTS is Education and Prevention, Treatment and Services Grants. It is a 50:50 Matched Commonwealth/State funded program. States determine the allocation of resource consistent with the aims of the National Strategy. This funding is broadly allocated 50% to Education and Prevention and 50% to Community Based Treatment and Care. Examples of funded programs include AIDS Councils, District Nursing Services and STD Clinic Services. This funding source also provides for "free" HIV testing.

HIV Study Grants, also 50:50 Commonwealth/State Matched, provide funds for training for direct care-givers and occupational groups. It has, for example, been the funding source for GP Training Courses such as the NSW AZT Prescriber Course.

BTS is Blood Transfusion Services and is a 40:60 Commonwealth/State program. It pays for testing and the associated costs of protecting the blood supply.

Medicare Funding is a direct grant from the Commonwealth to the States as a contribution towards the cost of hospital care for people with AIDS. It is based on the number of people with Clinical AIDS (not HIV infection) who are alive and receiving care in each State each year.

Finally there is the States' own funds. In NSW and Victoria, the two States with highest seroprevalence, there has been substantial funding applied over and above the National Strategy. This last column almost certainly underestimates the cost of HIV/AIDS to States, as it is difficult to cost the undoubtedly substantial contributions made from within pre-existing hospital and other sources.

Recent mischievous allegations have been made that reported HIV or AIDS cases have been falsely inflated to boost funding.

Two sources of Commonwealth funds to the States do take clinical AIDS case numbers into account. The numbers of HIV infections have no bearing on Commonwealth/State funding. NSW takes HIV seroprevalence into account when allocating funds to Areas and Regions, however this is only one factor in their funding approach.

Far from inflating numbers, there is now sound epidemiological evidence from both NSW and Victoria that clinical AIDS cases may be under reported by as much as 20%.

Furthermore, advances in treatments, particularly AZT have substantially delayed progress to clinical AIDS; ironically penalising success - although this may be to some extent compensated by longer survival of patients with clinical AIDS.

The Education and Prevention component of EPTS is, outside of the National Media Campaign, the area which attracts most public focus. A breakdown of overall funding in this area is as follows.

It should be noted that General Community funding includes funding of AIDS Councils. The high allocation against injecting drug use programs relates to the cost of Needle and Syringe Exchange Programs. These funded Education and Prevention programs comprise a mix of government, public sector agency and community based programs.

This gives you an overall picture of the breadth and scope of the National Strategy. But what does this funding mean?

Funding in these areas, although ascribed to Education and Prevention, is really a mix of Educational and Prevention and Treatment programs which belies their real nature.

AIDS Councils, for example, provide counselling services to affected and "at risk" clientele. They also provide targeted educational programs of an explicit nature which would not normally be possible for Government organisations. They provide access to arenas well beyond Government. These include "beat" programs, "bath house" programs and programs for men who have sex with men but who do not identify as being gay. Whatever your view of such activities, their reality is absolute.

Predominantly, however, and increasingly, as the cohort of men infected with HIV in the early 1980s progress to immunodeficiency and AIDS defining clinical conditions, AIDS Councils provide care and support services.

Education and Prevention funding also supports STD services, ambulatory care services such as the Albion Street Clinic, and Needle and Syringe Exchange Programs.

In fact, although the EPTS program is notionally ascribed to a 50:50 Education/Prevention and Treatment Service Split, the current trend is to Treatment and Care consuming the majority of resource.

Some services cannot easily be defined. Is a Needle and Syringe Exchange Program in reality Education and Prevention for the affected community or a Treatment Service for the individual.

The cost-effectiveness of these programs is beyond question. Measure for yourself the modest sums applied to these predominantly volunteer programs against the cost of either, or both, of a fully professional prevention program for at risk individuals and the cost of care, and loss of income, for individuals who would otherwise contract this disease.

I invite anyone here who scoffs at such benefit to seek to join, at first hand, with the programs such services deliver. Perhaps this would address some misunderstanding of Education and Prevention, Treatment and Services funding.

One substantial misunderstanding of the National Strategy is to equate the entire strategy with the National Media Campaign. Despite it having occurred six years ago, the Grim Reaper Campaign, is still equated in some peoples minds with the overall Strategy. National Media Campaigns are important to raise and maintain awareness. They must reflect the priorities as seen at the time. Recent a high successful Travel Safe campaign was run. An anti-discrimination campaign is planned.

Another concern, raised today is that the strategy does not address the risk of anal sex. This view seems to have arisen because the Grim Reaper Campaign - designed in 1985 for public television - did not specifically address anal sex. The National Strategy policy document itself and virtually every campaign since, has quite objectively addressed the issue of unprotected Anal Sex. It is an important issue and one not restricted to male homosexuals. Available data suggests that 10% or more of heterosexually active women regularly practice this form of sex. Material specifically developed by AIDS Councils for the male homosexual community focuses on Anal Sex and other risk practices. I am happy to provide material relating to the general or specific homosexual communities. Be warned some is explicit.

A most serious misconception, aired in a recent Weekend Australian, is that AIDS is a clinical manifestation of lifestyle and not of a viral infection. Further that HIV is neither new nor harmful. Later in the program, Professor Peter MacDonald will doubtless say more. I will only say that such silliness flies in the face of overwhelming empirical science. On the basis of similar pseudo-science should we believe that pyramids sharpen knives? Of concern is this sort of debate the scientific community can lead to being discredited by seeming to be unable to respond in a way which satisfies critics. I think the Media, the community and experts deserve credible debate. It must be recognised that not everything is known about how HIV damages the immune system, but HIV is after all very new and the amount learned about this disease in a relatively short space of time is remarkable.

This is not to say that ongoing intravenous drug use or exposure to unrelated disease - sexually transmitted or otherwise - may not influence the course of HIV whose ultimate manifestations relate largely to immune suppression. To the contrary, good general health, good nutrition and the avoidance of complications are the cornerstones of HIV education and treatment programs.

AIDS is the clinical manifestation of longstanding HIV infection.

HIV is a new disease. Retrospective serological studies, limited as they must be, identify the introduction of HIV into Western society in the late 1970s. It may have been present in Western Africa in the late 1950s.

By the first decade of next century, according to current WHO estimates, 30 million adults will be HIV infected. A further 10 million children will be infected and a further 10 million children orphaned. Most infections will be in Africa and other developing countries including Asia, South America and sub-populations of the United States - where 1 million infections are thought to have already occurred. Most of these infected people will have little or no access to treatment or support of any type, not even to testing programs, let alone sophisticated T-cell monitoring and antiviral and prophylactic services. The majority of infected adults and virtually all the infected children will die rapidly - usually succumbing to the combined effects of malnutrition; lack of any care; and opportunistic infections such as Tuberculosis.

Contrast that global situation, if you will, with the situation in Australia.

HIV, globally, is overwhelmingly a disease transmitted by heterosexuals and, increasingly, by vertical transmission from Mother to Babe. Many countries have experienced rapid spread from a disease initially confined to the male homosexual community into the IDU community and into the heterosexual community.

Not so in Australia.

The high prevalence of HIV in male homosexuals in this, as in other countries, represents the history of introduction of a new disease into a specific sexually active community in the 1970s and early 1980s. The fact that there are new infections continuing in that community represents the simple epidemiology of a reservoir of disease in a defined community and the reality of unsafe sexual practice among some members of that community - especially young gay men who do not necessarily identify as homosexual and who may not have accessed or heeded education and prevention messages. The decline in new infections in the male homosexual community is likely a reflection of behaviour change, education and the adoption of safer sexual practices.

The distinct feature of the HIV epidemic in Australia, however, is the lack of outside the male homosexual community. This is in part explained by the relatively closed nature of that community and in part by behaviour change within that community resulting in a lesser likelihood of spread to other contact communities. This explains a part but not all of the experience. Other factors appear to be operating.

Despite protestations by some about lack of perfect data, I would draw your attention to two areas - the prison population and women. In all States, HIV testing on prison entry is virtually universal.

In NSW, 85% or more of all prisoners are in prison for drug related offences - a shocking statistic in its own right. NSW also has the highest seroprevalence of HIV and therefore the highest risk of spread into the IDU community. Of 1670 plus individuals tested on entry (some are repeat offenders) less than 80 have tested HIV positive. Of these half had prior knowledge of infection. As prison entry testing by and large reflects community behaviour we = deduce that even at the "hard edge" of ID use, prevalence approximates 0.5%. Contrast that with New York, where 25% of female and 16% of male prisoners have HIV infection.

Amongst women, in some parts of Australia, but important parts, particularly inner Metropolitan Sydney and Melbourne, antenatal testing has become virtually universal. There are concerns about this practice in terms of informed consent, counselling and cost effectiveness but for the purpose of today's conference the important thing is that the number of new infections reported from this group outside of those who have self identified as at high risk can be measured on the fingers of one hand.

Approximately 1.5 million HIV tests are performed each year in Australia over and above tests performed to protect the blood supply. This rate of general testing is higher than in any other country. The information base in Australia is substantial. It was said earlier at the press conference that less is known about HIV than ordinary notifiable diseases such as gonorrhoea. This is patently wrong. Virtually every positive HIV test is notified through a universal laboratory notification system whose purpose is to collect information to guide appropriate responses. By contrast we know that doctor notification of gonorrhoea we know captures 20% or less of cases.

Near perfect information could be obtained, of course, if all Australians were tested. Annual universal testing would cost a mere $250 million for the tests alone, not counting medical attendance, venipuncture and counselling - say another $250 million. Even better, why not test each 6 months. For a mere $1 billion per annum we could really accurately know so much - but change not a thing.

The course of the HIV epidemic in Australia has, to date, differed from elsewhere in the world. Is this due to our unique approach?

Even if my instinct tells me that it must be, I am not going to make such a claim here today. Rather, I will indicate to you that a major evaluation of the National Strategy is currently underway and I would be. happy to answer any questions about that evaluation.
 

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T.R.A.I.D.S. (Transfusion AIDS)
Address by Mrs Lorraine Ciblic

Conference Paper: AIDS - Have we got it Right?
A conference organised by The Australian Doctors Fund Ltd.
Hosted by Professor Fred Hollows & ADF Chairman Dr. Bruce Shepherd
Sheraton Sydney Airport Hilton
May 14th and 15th, 1992

I've been asked to speak today as a person who has medically acquired AIDS and as a helper with the TRAIDS group. In this talk I'd like to give a personal account of what it is like living with AIDS, share with you some experiences I have gained from helping other families with AIDS and point out some examples where improvements can be made to our approach to this whole issue. I'm grateful for this opportunity to speak at this summit and for the first time have "experts listen to me". The medically acquired AIDS group in NSW outnumbers all the other states in total. However, when our cases were first being identified our group encountered antagonism and rejection, with opponents concentrating on descriptions like "innocent" and "angry", rather than addressing our medical, emotional and financial needs.

I received infected blood in 1982 after a car accident. Over 120 units of blood were needed to save my life, approximately half of which were donated by family and friends called in when warm, fresh blood was required. As a blood donor prior to the accident, I recall how important it was to me to be well when donating blood to save lives, to the point where I refrained from, donating blood when I had a cold. I took the responsibility very seriously. I was unaware that donating blood to the Blood Bank was used by people to test themselves for diseases such as VD and hence naive to the fact that a blood transfusion could also transfuse a disease.

I was diagnosed with HIV in early '86 and after diagnosis my life changed dramatically. The trauma and upheaval in one's life is sometimes unbearable. It has meant drastic lifestyle changes such as not being able to have more children and loss of normality to one's sex life. Not only is this a death sentence, but one becomes infectious for life, not one day or one month but for life and because of this one is always nervous whether medical and health services will be sympathetic or not when they're sought after. Also along with this disease comes the stigma of AIDS which seems to affect the men in our category worse especially when they are repeatedly asked "Are you homosexual?", "Have you had sex with a male'?.

When the news of AIDS hit I became convinced that with my history of 120 units of blood that I was high risk. At the time I had to ask my doctor on many occasions for a test before I finally convinced him that I was high risk and needed to be tested. His apathy was indicative of the attitude of the authorities at this time. They argued that the risk of HIV being transmitted in this way was very small. When I discovered that I was in fact positive and became acquainted with two other ladies in similar situations, it became obvious to me that there must be alot more people infected through this mode that didn't know.

We set about trying to warn the public and encourage testing for the high risk, but the authorities and the Blood Bank in particular refused to hear or accept that every recipient pre '85 was potentially carrying HIV. The Blood Bank used it's vast resources to dispute our claims and it wasn't until 1988 that a public campaign was initiated to encourage recipients of blood pre '85 to be tested. It soon became apparent that there were lots of these people and due to the sluggish nature of the Blood Bank to acknowledge the dilemma these HIV carriers had become HIV spreaders to husbands, wives and children during this time. There is no doubt in my mind that if the Blood Bank was not so slow to move, lives could have been saved. This has been a tragic lesson and one which authorities and the Blood Bank should put into practice today. They must promote the use of one's own blood for transfusions if possible and warn the medical profession and the public of the risks that exist even today with a blood transfusion. One never knows when the next epidemic will arrive.

Once we learnt of our infection it was very difficult to obtain information and support. After making inquiries we learnt of the Albion St Clinic and after visiting this clinic we realised it was mainly geared for the homosexual community. The environment was one which we were unaccustomed to and we all, but especially the men in our group, had unpleasant encounters at this clinic. There was definitely a need for a support network catering specifically to our group which consisted mainly of heterosexuals and their families. The homosexual community had done a marvellous job setting up their support framework with the funds allocated and the authorities especially State Government failed to recognise that our needs were different and expected us to use the same support network. It was very disappointing and saddening that the Blood Bank which was directly linked to all of our group and well aware of our situation, didn't make an effort to utilise their vast resources to help us cope especially in those early days. I felt that they avoided us because they were concerned about the legal implications if they helped us i.e. they would be admitting liability. It must be remembered that NSW has more medically acquired HIV people than all the other states put together.

Finally the TRAIDS group was formed. and although there were some initial hiccups, currently it's operations are satisfactory. Today some of it's functions include: counselling, social support, treatment information, liaison and advocacy with government and other agencies. It is important that it maintains the ability to adjust to the changing needs of the people it supports especially as their disease progresses. TRAIDS has contributed to uniting the people with medically acquired HIV and the formation of friendships between these people. These friendships have served to create an atmosphere of counsel and support enabling the TRAIDS employees - to devote more of their time to the people in greatest need.

Even though TRAIDS fulfils it's purpose as a support network there is still a need of financial assistance for people with medically acquired HIV. As has occurred in other states and countries and as was recommended by the Social Issues Committee, our group has claim for financial help from the State Government. This help has yet to arrive as the State Government fails to see the urgency of the situation as people are dying and leaving children behind. I implore the Government to act soon.

I can understand doctors being apprehensive when it comes to treating us especially surgeons and when I hear of doctors that decline from providing services I console our people by saying that it is our job to seek out doctors that are comfortable treating us and I try o get these patients to understand the doctor's feelings. However there are areas where doctors and medical workers can improve the services they provide in respect to us. These are, and I have listed them in point form:

  1. Familiarise yourself with transfusion risks and warn your patients.

  2. Place more emphasis on healthy lifestyle as part of treatment.

  3. Warn people that although they have a right to confidentiality, practical considerations to themselves and others dictate that it is not achievable, and so, don't be surprised when the pharmacist asks you "Your suffering from AIDS?" as he or she hands you your AZT and Bactrim, or when health care workers make similar remarks when they see the yellow "high infectious risk" sticker on your file as it goes around the hospital.

  4. Ensure patients starting AZT are fully aware of all the side effects eg loss of taste and smell is not often mentioned, it's efficacy, method of administration and what I mean by that is, (When to take it and what with ?) because this often minimises the nausea, vomiting etc.

  5. When a person tests HIV positive make sure that they are told person to person and not on the phone.

  6. Don't put specific times on life span e.g. 12 months to live because from what I have seen this often affects the patient's state adversely and who knows they may succumb to something else anyway which I have seen happen.

  7. Keep the patient informed and allow the patient to be in control of when it comes to deciding on treatments etc.

In summary I feel that the earlier one identifies a HIV carrier the better. That person can then make adjustments to his or her lifestyle to ensure the virus is not spread and also take measures to preserve one's life as long as possible. I hope that by speaking here today I will help you, the policy makers "get it right". It seems to me that since the virus can not live outside the body, there is a chance of eliminating it but that depends on identifying all carriers of the virus and bring about modification of their lifestyles to stop spread. When you decide on education and health policy In relation to this disease, this must be a fundamental objective kept always in mind.

THANK YOU.

Dr Julian Gold
Director of the Albion Street Centre (Sydney AIDS Clinic)
May 1992

Conference Paper: AIDS - Have we got it Right?
A conference organised by The Australian Doctors Fund Ltd.
Hosted by Professor Fred Hollows & ADF Chairman Dr. Bruce Shepherd
Sheraton Sydney Airport Hilton
May 14th and 15th, 1992

Thank you very much for inviting me to speak on the topic AIDS; Have We Got It Right. As we begin the second decade of this epidemic in Australia, I believe that we should be forward looking and asking the more important question how can we do better. This questioning is in no way meant to denigrate any of our national achievement so far. However, is our responsibility to search for the gaps in our knowledge and understanding and to constantly question any complacency that may arise from a belief that suggests we are doing enough, and that unlike any other country in the world, we alone have got it right and the spread of HIV is under control.

Tonight I would like to address several areas of the AIDS situation and I will divide them into four categories. First, three good things we have done. Second, three reasons why the situation could get worse. Third, a reason for caution in interpreting data about the status of AIDS in Australia and lastly three areas where we definitely need to do better.

First, I believe without any doubt, that Australia compared with any Western country, provides as good, if not better clinical care to patients with HIV disease. Every patient has access to the most up-to-date treatments, the newest drugs which may show some antiviral effect and core by dedicated experienced professionals, all at no cost to the patient.

Second, our Social Services system provides support, both financial and housing, without discrimination to the increasing number of people with HIV disease who are becoming totally dependent on the public system. By comparison, in the United States, AIDS is now one of the most important causes of homelessness, because people must sell all of their possessions in order to become eligible for government funded health care. In Australia, many of our community based organisations can be justifiably proud of maintaining their optimism and direction of purpose in face of the mounting death toll amongst their constituents.

Our third main achievement is the National AIDS Strategy, which has been running for three years at a cost of about $350 million and is currently being reviewed. Out of this process will come plans for our response to this most crucial and potentially dangerous period of the HIV epidemic and therefore it is necessary that during this conference we actively raise issues of concern.

Next I will address some reasons why I believe the situation could get worse and that in fact we may be entering a dangerous period.

Firstly, current data show that most HIV positive people could become increasingly infectious over the next five years. This is explained by data released last week from the National Centre for Epidemiology and Population Health in Canberra which indicate that the majority of currently infected people are entering the phase of their illness when they may be infectious by sexual contact and sharing needles.

Two graphs show this (Figure 1). This graph predicts that by ten years after infection nearly all HIV positive patients will have CD4 cells below 500, indicating that HIV has affected the immune system and that the body's ability to suppress viral reproduction is waning. Biologically this may mean that they are more likely to infect their partners or, if female and become pregnant, their children. There is no current evidence to that anti-retroviral therapy reduces the level of infectiousness even though there is a delay in progression to AIDS (Figure 2). In order to predict the number of people who are approaching this situation, this second graph shows that most HIV infections in Australia occurred during a relatively confined time period between 1982 and 1985. Projecting this incidence ten years on shows that even with the use of currently available anti-retroviral drugs we would expect that over the next five years there will be a major increase in persons becoming symptomatic with HIV disease. We are really just in the early stages of the sickness burden that HIV causes.

It is therefore essential that we understand how people with HIV infection behave and what factors influence them to place uninfected people at risk. Research conducted amongst young men at Albion Street shows that those who are at risk of HVI infection, often consume excessive quantities of alcohol and other drugs. Guinan and others have shown that drug and alcohol intake, which could be defined as excessive, was reported by about one third of people interviewed, which is about three times higher than their age matched counterparts in the general population. Of concern is that 22% of HIV positive men had placed themselves at risk of transmission as a result of being drug or alcohol intoxicated. Anecdotally, we find that as illness progresses and the young patient loses the independence of working and becomes dependent on social security payments and subsidised housing they seek occasional comfort in escaping their situation by using substances and engaging in activities that could spread HIV. If their infectivity is increasing then fewer contacts would be required to transmit HIV to either their casual or regular partners. The psychological term for this lapse in resolve is called relapse and it is well documented in every country, but the reality is that it is just human and while we all try to maintain an ideal lifestyle, it is very difficult while living with the limited future of having a terminal illness. Studies in the United States show that women with HIV have exactly the same fertility rate as uninfected women of the same age. Is this just a failure of their carers to convince them not to have children or is it, as I believe, an example of our ability to accurately convey information about risks, but which is not necessarily translated into a change in behaviour. Locally, we are particularly concerned about the number of health care workers who have become infected in the past two years despite having an extraordinarily comprehensive knowledge about the mode of transmission of HIV and how to avoid it. It seems that we are stuck into a groove of providing more and more information about HIV to uninfected people, and not concentrating our efforts into studying the complex problems of behaviour and coping in infected people.

In a wider context, we have recently diagnosed several heterosexual men who have probably become infected after sexual contact in Thailand. These are not the first and will certainly not be the last given that there are an estimated 400,000 Thais who are currently Infected and that Australian men as well as men from other countries are such regular visitors to the young men and women of their neighbours. It is estimated that by 1995 more people will be infected in South-East Asia than in all industrialised countries. In other words our part of the world is on the brink of a common tragedy. This is undoubtedly on area where our situation, in Australia, can become much worse and where we could do better, by providing training and policy advice, especially in the area of drug related transmission of HIV.

Before covering the areas where I think we could do much better. I would like to touch on some concerns about the usefulness of data that are currently available. This was dealt with in much detail by John Kaldor, but I believe that it is imperative that agencies who are conducting programmes which are aimed at changing behaviour must show that are able to reduce the number of new infections which are occurring.

In San Francisco, important information on behaviour change is provided by conducting regular cross-sectional surveys of gay men independently recruited. These surveys show that over the past five years there has been a significant reduction in the average number of sexual partners. Nevertheless, because the prevalence of HIV infection has increased, each person in fact has a higher individual risk of having a sexual contact with on HIV infected partner. In a recent paper by Hoover from John Hopkin's University data from their National HIV Cohort Study which Includes 4954 homosexual and bisexual men was used to give a probability that 50% of participating uninfected men would seroconvert by age 50, despite extensive education and having regular monitoring. In Sydney, our longitudinal studies of gay men are limited by their small numbers (less than 200) and very selected subjects and while they seem to show positive results, I am concerned that they are neither representative of the general population of gay and bisexual men nor can their observations be projected into the coming decade.

I would now like to briefly address three other areas where I think we have to do much better. These areas demonstrate an underlying problem in the way bureaucracy interacts with the political decision making process.

The first is with injecting drug users. Despite the fact that the estimated prevalence of HIV amongst injecting drug users in Sydney is about 5%, which is considered to be very low, data from this study in Sydney which was conducted by Drs Michael Ross, Alex Wodak, Mel Miller and myself and funded by CARG included 1245 respondents of whom 30% continue to share needles. This survey was conducted In 1989/1990 and so we have very little idea of the current situation. It is worthwhile noting that in Edinburgh the infection rate went from 5% to 50% in eighteen months and that in London which provides the some access to methadone programmes, as in Sydney clean needle and syringe exchanges the prevalence of infection has risen from 5% to 12% in the past year. Over 70% of our cohort interviewed in Sydney, said that they would prefer to use Marijuana rather than intravenous drugs if it was legally available. It is Interesting to note that we spend $280M annually on drug enforcement programmes; and it costs $30,000 per year to keep a prisoner in jail. By comparison, it costs $5,000 per person, per year for a drug rehabilitation programme and $2,000 per year to keep a drug user on methadone. It is therefore of much concern to me that oven though virtually every expert conference which addresses the issues of drug law reform in Australia recommends that addiction is regarded as an illness and not a crime, it has been impossible for the bureaucratic process to convince the political process that it is critical to redefine the priorities from making popular decisions to making necessary decisions. What is needed is a change in drug policy which should be influenced by our paramount need to contain the spread of HIV. Therefore, we need to evaluate ways of letting people use intoxicating substances whose administration does not spread a fatal disease.

Second is our approach to prisons where even after ten years of experience with AIDS there are still no condoms or clean needles in any prison in Australia and methadone programmes are almost non-existent. In fact, NSW and South Australia ore the only states where there is any methadone in any prisons, and there is still a possibility that these programmes will be scaled down. In my opinion, it is scandalous that bleach, which is a cheap, effective and safe method of cleaning syringes is not made available in prisons immediately. Perhaps because we hove not seen on explosion of HIV in our prisons there is no imperative. But HIV is not an explosive epidemic. It is a slow and insidious virus which can take months to diagnose and years to cause illness. Therefore, action needs to be taken now.

The third area of concern is the threat of HIV spreading through the Australian Aboriginal Community. I am sure this subject will be covered later in the conference by Professor Hollows. However. I feel it is important enough to stress that many of my colleagues believe that link between city based aboriginal people who are HIV positive and their country communities has the potential of spreading HIV throughout rural Australia. Again this may not be an explosive process which would interest the media, but unless we go beyond just providing information through pamphlets and posters and understand the process of behaviour change, including discrimination, we will have little influence on the course of the epidemic in the aboriginal population.

In conclusion, I have covered three good things we have done, three reasons why things could get worse, a reason for caution and three things we must do better.

Lastly. the review of the National AIDS Strategy I referred to earlier is probably the most important task currently being undertaken. It is therefore essential that all of its methods and conclusions are carefully scrutinised and that the review is independent of both government which provides funds, and the organisations which currently receive the majority of AIDS funding. This independence must be seen to exist, as well as actually existing. Their responsibility is not to tell whether we have got it right, but to critically assess how we can make it better.

Figure 1
Figure 1
 

Figure 2
Figure 2

Speech given by Mr Paul Gross
Hospitals Contribution Fund and Director of Health Group Strategies Pty. Ltd.

Conference Paper: AIDS - Have we got it Right?
A conference organised by The Australian Doctors Fund Ltd.
Hosted by Professor Fred Hollows & ADF Chairman Dr. Bruce Shepherd
Sheraton Sydney Airport Hilton
May 14th and 15th, 1992

Recent Estimates of Costs, USA by Service Component - % of total

COMPONENTCALIFORNIANEW YORK
Inpatient Care72.878.0
Outpatient Care8.39.4
Long-term Care1.30.7
Home Health Care4.20.8
AZT, aerosol pentamidine, other drugs13.311.0


Estimated Prevalence of AIDS and HIV ASIA, CIRCA 1991

--AIDS CASESHIV CASESMAIN MODE OF TRANSMISSION
Cambodia02Not Available
China6518Intravenous Drugs
Hong Kong58193Homosexual/Bisexual
India4,848400,000 - one million*Heterosexual
Indonesia3026Not Available
Japan4151,898Contaminated Transfusions
Laos07Not Available
Malaysia342,189Intravenous Drugs
Phillipines56277Heterosexual
South Korea8154Heterosexual
Singapore3050Homosexual/Bisexual
Taiwan40240Heterosexual
Thailand190200,000 - 500,000*Heterosexual
Vietnam01Not Available
* Estimated AIDS/HIV cases from surveillance data. Other figures are actual case reported.
Source World Health Department and other statistics supplied by various government and nongoverned sources.


Projecting Treatment Costs Persons with AIDS

  • Cost per Calendar Year: Two Components -Inpatient Costs
    Average LOS, Charge/bed-day, # admissions
    - Outpatient Costs
    charge/outpatient visit, # outpatient visits
    plus costs of long term care
    plus costs of home health care
    plus costs of drugs

  • Cost per lifetime
    Calendar year cost
    average survival time (years)/average # months alive during years of survival


  • Annual Costs, Outpatient Care, US Studies HIV Infected persons without AIDS

    --Arno et al. a------
    --PretreatmentTreatmentHawaii bMichigan c
    Medicaid
    New Jerseyd
    TAP
    Drugs$593$385
    AZT$6,032$2,700
    Aerosol Pentamidine$2,000$3,000
    Anti-fungals$500
    Acyclovir$1,100
    Office and clinic visits$426$576$500$6,708$900
    Laboratory and X-ray$368$879$1,600(also includes
    laboratory and
    X-ray charges)
    $540
    Counselling and other costs$60$150
    Total$854$9,637$9,400$7,301$1,825
    a Arno, P.S D. Shenson, N Siegel, P. Franks, and P. Lee, 1989. Economic and Policy Implications of Early Intervention in HIV Disease, JAMA 262 (11): 1493-98.
    b Data provided by Nancy Kern, the Governor's Committee on AIDS, Hawaii State Dept. of Health, Honolulu, Hawaii, June 15th 1990.
    c Data provided by David Solomon, Michigan State University, October 31st, 1990.
    d The figures here are estimates and were provided by Steven Young, director, Division of Care and Treatment, New Jersey State Dept. of Health, October 30th, 1990, about enrollees in New Jersey's Treatment Assessment Program.


    Cost Effectiveness Analysis in Health Care Data Needed

    CEA: Measures Costs and Effectiveness of Two Interventions

    Costs - Costs of treatment
    plus Costs of treating any side effects
    minus Costs of future treatments averted

    Effectiveness
    - saving in life-years
    or savings in quality-adjusted life years.
    COST-EFFECTIVENESS -
    Cost per life year saved
    or Cost per quality adjusted life year saved.


    Cost effectiveness of medical interventions

    StrategyUS$/year of life saved
    Smoking cessation counselling6,463
    Early zidovudine (continuous benefit)6,553
    Oat bran for high cholesterol21,189
    Renal dialysis42,249
    Early zidovudine (one-time benefit)70,526
    Colestipol85,519
    Coronary artery bypass grafting113,087
    Cholestyramine141,600
    Screening mammogram (women under 50)167,850

    AIDS - Setting the Agenda?

    Conference Paper: AIDS - Have we got it Right?
    A conference organised by The Australian Doctors Fund Ltd.
    Hosted by Professor Fred Hollows & ADF Chairman Dr. Bruce Shepherd
    Sheraton Sydney Airport Hilton
    May 14th and 15th, 1992

    Article Missing

    KEYNOTE ADDRESS
    Speech given by The Hon Brian Howe MP, Deputy Prime Minister, Minister for Health, Housing and Community Services

    Conference Paper: AIDS - Have we got it Right?
    A conference organised by The Australian Doctors Fund Ltd.
    Hosted by Professor Fred Hollows & ADF Chairman Dr. Bruce Shepherd
    Sheraton Sydney Airport Hilton
    May 14th and 15th, 1992

    Mr Chairman, ladies and gentlemen. I am very pleased to be here and addressing the theme of your Conference. The timing is appropriate as Australia moves into the formal evaluation phase of the National Strategy.

    We have taken this epidemic seriously from the outset. We have started with the premise that good government deals with reality. We must deal with the real epidemic, the real numbers, and try to determine what is the best scientific advice and educational strategies.

    Australia's own response was made so much stronger in 1989 when all Governments agreed to a National HIV/AIDS Strategy. This was a blueprint for managing the epidemic - for setting policy directions and defining the roles and responsibilities of Federal and State Governments, non-government organisation and individuals. The National Strategy was drawn up following an extensive process of consultation with all interested parties. Including scientists, members of the medical and allied health professions, community groups and the Churches. Few other countries have gone through this process, and Australia has rightly been given credit for its rapid response, and its direct and forthright education strategies.

    Support for research into the scientific, medical and social aspects of AIDS is a key component of the National Strategy. The work of Australian researchers has helped to define the parameters of the epidemic in Australia; it has produced results of the international significance. Three National Centres have been established in the areas of HIV virology, HIV epidemiology and clinical research, and HIV social research.

    In the area of virology. Australian researchers have been involved in such studies as the development of new diagnostic techniques evaluation of the immune response top HIV and the study of the complex interactions between virus surface proteins.

    Australian researchers were the first to identify the acute illness which follows initial infection in about 50% of infected people. The concentration of resources and expertise at the National Centre in HIV Epidemiology and Clinical Research has supported a broad program of medical research and the running of low cost and effective clinical trials.

    The National Centre also coordinates the monitoring of the epidemic. In tandem with a network of testing laboratories, it provides a comprehensive and timely picture of the progress of both HIV and AIDS in Australia. This picture is complemented by a variety of surveillance projects in populations of homosexual men and injecting drug users. The social and behavioural aspects of HIV infection and AIDS have also received considerable attention. Key studies have focused on such issues as what makes for behaviour change and the extent of the adoption of protection behaviour evaluating particular interventions, and the needs of people with HIV.

    It has been a feature of Australia's approach to AIDS that community organisation have been closely Involved with Government in developing and running education and community care programs. Involving community groups recognises the value of peer education, and the public health benefit of encouraging the people most affected by AIDS to co-operate with the Government in dealing with the problem - rather than alienating or punishing them. We have also been prepared to embrace controversial strategies to combat the epidemic including needle and syringe exchange schemes and tackling law reform in such areas as discrimination and public health.

    After 10 years there is still no vaccine and no cure. But there is much more knowledge about the HIV virus and its devastating social and economic consequences throughout the developed and developing world.

    In Australia we have constantly monitored and adjusted our response in implementing the National Strategy. It may he helpful to compare what we know 10 years ago with what we know today.

    International scientific and medical opinion In 1982 was suggesting there had already been widespread transmission throughout the world. Early estimates of HIV infection in Australia, coming from the AIDS Task Force, chaired by Professor Pennington, indicated that as many as 50,000 could be infected in this country. That concern spawned "The Grim Reaper". It was controversial, and It certainly put AIDS on the Australian health agenda.

    In 1992 we have quite different projections from the National Centre in HIV Epidemiology and Clinical Research, which we established in 1990. The Working Party, which Dr John Kaldor released last week, has confirmed the estimates published in the 1989 White Papers, that at the end of 1990 between 15,000 and 20,000 Australians were infected with HIV and AIDS. The report also predicted that between 700 and 900 cases of AIDS could be expected each year from 1991 to 1994.

    The great majority of cases will be among gay men. They, and people with medically acquired AIDS, have borne the brunt of the disease in Australia. Most of those cases wore infected before 1985 - before we were sure of how it was transmitted. In Australia, the expected spread among intravenous drug users, and to the heterosexual population, has not yet happened. Our clear task is to keep things that way.

    The fact that HIV hasn't affected many in the heterosexual community is no comfort for the few it has.

    It is a communicable disease. mainly transmitted sexually or through IV drug use, but that fact - that in Australia it mainly affects groups who are seen as challenging to the social and cultural values of the majority - means that most people do not see, or wish to see, themselves as facing any risk, whatever, their private behaviour.

    I'm not sure whether we'll over be able to demonstrate, in strict scientific terms, a direct correlation between our education and prevention strategies and the fact that HIV/AIDS hasn't spread into the wider population. But what we can show is that Australia, alone among the OECD countries, is containing the epidemic to the communities in which it first emerged. That means that we'll need convincing arguments before considering any major change in direction. When the evaluation of our education strategy is finished, we should be in a better position to judge.

    In 1985, research produced a test which could detect antibodies to the virus, and Australia became one of the first countries in the world to secure the blood supply. At the time, affected groups were resisting strongly any suggestion of compulsory screening and isolation. No treatment was available then, and fears of identification, victimisation and discrimination were high, and that was understandable considering the treatment dished out to a little girl In Gosford at the time. It is understandable that homosexuals, injecting drug users and wax workers expected less compassion. But that reaction was cause for real concern, too, that the presence of the virus would be driven underground. Hence the policy of encouraging voluntary testing, with guarantees of confidentiality, and appropriate counselling and funding for support groups to help affected people to come to terms with the virus.

    By 1992 our scientific and medical knowledge has increased massively. Data are collected from a wide range of sources to track the epidemic.

    There is now a body of GPs and specialists who are familiar with the disease and treatments. Information is spreading about the benefits of early testing and treatment and of full and frank education. Community groups are encouraging these measures. This is all because confidence in the partnership between the medical profession, Government and community groups has blossomed - in spite of the many instances of victimisation and discrimination, some of which were cited in a recent NSW report.

    Our testing policy is clear and unambiguous. It was set out in the White Paper, and was based on guidelines the Australian Health Ministers' Conference adopted, and the Australian Medical Association supported in 1989. Since then the Australian National Council on AIDS (ANCA) and the Australian Health Ministers have built on those principles. Infection control procedures have been developed and updated by ANCA, and ANCA, the National Health and Medical Research Council and the Health Ministers recently endorsed principles covering infected health care workers to guide the health Industry.

    While Australia may not have perfect information about the levels of HIV infection here, and in fact cannot, we do have a better idea than most countries. To take an example cited in the media recently: Australia, with a population of around 17 million. Is carrying out 1.5 million tests each year - the UK (excluding Scotland) has a population of around 49 million, and carried out 775,000 tests in 1990. No wonder their reported HIV infection level is about the same.

    In the area of education and prevention, Governments have had the responsibility to both inform the general public about the virus and its modes of transmission and to provide explicit educational material for those engaging in risk behaviour.

    As our knowledge and monitoring has grown, and our experience in education has deepened. It has become clear that the priority now must be to direct our educational efforts in a more targeted way and in a way designed to achieve behaviour change. It is increasingly clear that most people now have a reasonable understanding of the ways in which HIV Is spread, which is why I am considering the priority which needs to be given in future to widespread media campaigns.

    Governments, and especially health authorities have the responsibility to provide information and to ensure a climate which encourages people to take personal responsibility for their own behaviour - to protect themselves and others. For some the answer will mean abstinence, for many and for most of their lives it will mean monogamy, and for some it will be using condoms and other protective behaviours. We should all acknowledge that those are the realities. The bottom line is personal responsibility.

    It is for this reason that from the outset the education strategies have involved a partnership with affected groups. Members of the medical profession seek and trust education and information from their colleagues - similarly, education and information about sexual or drug taking behaviours is more effective when it is developed by and with affected groups such as the gay community. Injecting drug users, Aboriginals and ethnic groups. Such information and educational material can be more targeted, more focused to community needs, when it comes from a trusted source and we need to strengthen the capacity of community groups to achieve their objectives.

    The concerns which Professor Hollows and others have expressed about the special vulnerability of the Aboriginal community to AIDS are concerns which all Governments share with the Aboriginal community.

    It was for precisely that reason that I was happy to sponsor the national conference in Alice Spring earlier this year to provide Aboriginals with a forum in which to assess their successes and failures, and to develop future strategies and directions. I look forward to seeing the results of that conference being translated into action. Some of you may like to take the opportunity to look at a video of the conference which is available here today.

    There are many challenges in the 90s for Australia, but before I go to these it may be appropriate if I put Australia's response to the epidemic in a regional context. Australia clearly dominates the AIDS profile in the Western Pacific and South-East Asian regions, at least in terms of AIDS diagnoses, with nearly three quarters of the total AIDS cases in the Western Pacific, and nearly 20 times as many AIDS cases as the entire South-East Asian region. However, AIDS cases represent the tip of the iceberg for the HIV epidemic in many countries - Thailand alone may have many times more HIV infected people than Australia. Clearly, the experience built up in Australia in responding to the AIDS epidemic places us in a position of responsibility to assist other countries in the region who can learn what we have encountered and achieved.

    We need to maintain and build on the partnership which has been fostered between the medical professions, affected groups and Government to ensure our response is appropriate and balanced.

    We must maintain and strengthen our monitoring of the epidemic, and be alert for and responsive to any signs of change.

    We must continually review priorities for resources and ensure the balance between education and prevention, and treatment and care, is appropriate.

    We need to maintain a solid scientific and social research base to ensure our response is adequately informed, and that we can continue to contribute to the international effort to control the epidemic both in Australia and in our region.

    We must maintain our educational efforts as the only effective prevention measure against the virus. That includes their key role in reaching affected groups. But we must assess the balance between targeted programs and mass education programs in the light of the epidemiological trends.

    To ensure our policies and programs are effective we must eliminate discrimination against affected groups, and we must ensure the civil rights of the infected and those who treat and care for them are protected.

    We must plan ahead to ensure an appropriate system of hospital and community based care and treatment is available for people who are infected and now becoming ill.

    There are no right or absolute answers in Australia or in any country, for combating this epidemic. Governments have a responsibility to umpire the debate and to take the leads based on the best scientific and medical advice available. They must also act in the best interests of the infected community and provide a climate of confidence in which their rights of privacy and confidentiality are protected and balanced with those of the wider community.

    As a last thought, I'll ask that you consider what I've said, and that as you discuss the issues you approach them with two questions in mind - is our approach fair? is it balanced?

    Thank you.

    Summary
    Speech given by Dr. John Kaldor
    Associate Professor in Epidemiology and Deputy Director of the National Centre for HIV Epidemiology and Clinical Research

    Conference Paper: AIDS - Have we got it Right?
    A conference organised by The Australian Doctors Fund Ltd.
    Hosted by Professor Fred Hollows & ADF Chairman Dr. Bruce Shepherd
    Sheraton Sydney Airport Hilton
    May 14th and 15th, 1992

    Transmission of HIV in Australia

    HistoryNumber----%
    Sex between men277986
    Sex between men and injecting drug use ----852.6
    Injecting drug use611.8
    Medical procedures1304.0
    Heterosexual contact451.4
    Vertical80.2
    Other1304.0
    Total3238100


    Sexual transmission of HIV between men

    Injecting drug users Heterosexual transmission of HIV Other questions

    Education and Prevention: Some Hits and some Misses

    Speech given by Associate Professor Susan Kippax, Associate Director, National Centre for HIV Social Research, Macquarie AIDS Research Unit, Macquarie University NSW 2109

    Conference Paper: AIDS - Have we got it Right?
    A conference organised by The Australian Doctors Fund Ltd.
    Hosted by Professor Fred Hollows & ADF Chairman Dr. Bruce Shepherd
    Sheraton Sydney Airport Hilton
    May 14th and 15th, 1992

    Abstract

    Men and women, both heterosexual and homosexuals, endorse and adopt a variety of strategies which they believe (rightly or wrongly) prevent the transmission of HIV. These prevention strategies have been taken up differentially by sections of the population. Some prevention strategies have been promoted in education and media campaigns. it is argued that the uptake of these 'advocated' strategies points to some successes in such campaigns. The failure of some sections of the population to adopt these strategies reflects in part the absence of appropriate campaigns and the reliance on myths and misinformation. Many of these myths have been produced, often unwittingly, by medical discourse and promulgated by the media. Data are presented which indicate that certain campaigns have been and continue to be effective for many men who have sex with men. On the other hand, the response of some sections of the heterosexual community points to a number of barriers to the adoption of safe sexual behaviour. Suggestions are made to improve the hit rate.

    Introduction

    There has been a great deal of debate over the past months about the number of new HIV infections. There have been discussions of whether these infections have been contained within the 'gay community' or whether HIV has 'taken off' in the general heterosexual population because of the 'wild cards of sexuality' - as one media commentator has called bisexual' men who 'conceal their sexual preferences from their wives', or whether the heterosexual transmission figures are exaggerated and 'normal' people need not worry about HIV or AIDS...

    Mixed up in this debate has been a further debate about the efficacy of HIV-prevention education programmes - whether they have contained the appropriate information, whether they have fuelled hysteria, whether they have targeted the appropriate populations, and whether they have achieved their main purpose, that is to stop or at least reduce the spread of HIV in the Australian population.

    I am going to deal with one set of issues - those which concern education programmes and their efficacy. Much of this debate has been ill-informed. Part of the problem lies in the false belief that social scientists (or anyone else for that matter) can measure the outcome, the impact of any one particular campaign in the same way as one can measure the impact of a new drug (its efficacy and side-effects). An education campaign is not like a clinical trial - give group x (drawn at random) drug a and give group y (the control) a placebo - and measure the impact of drug a. There are a number of differences:

    1. can't isolate the 'control' group who don't receive the information or the education .. so have no control

    2. can't isolate either the experimental group, which receives the information, or the control group, which doesn't from the other information and messages which are being broadcast, talked about written about, etc…

    3. people do not simply absorb the message... they interpret, shapes, modify the information; they deny, forget, remember the wrong bits, discard, refuse to believe, etc…

    4. people are active interpreters of educational and other messages, not simply passive ciphers. Messages about sex or drug use, for example, are received from particular positions; the sexually inexperienced will respond differently from the sexual experienced, men will respond differently from women…

    5. the information doesn't flow directly in a simple one-way fashion from educational programmes or the media to the individual - rather the information is mediated by the cultural and sub-cultural understandings and interpretations of the groups of which the individual is a member.
    Education programs are thus extraordinarily complex things to evaluate. They have intended and unintended consequences. They can, however, be evaluated - but not as clinical trials are and not as single entities. Rather the cumulative impact of the education programs and other messages from media can be assessed in terms of the strength of the relationship between the changes advocated in the education programs and the changes which occur in the populations targeted by the education programs. Monitoring changes in sexual practices and injecting drug behaviour over time does allow us to draw some conclusions about the success or otherwise of educational programs. As I hope to show, behavioural data also allow give us some purchase on the processes underlying any changes that are made.

    All indications from clinical data and epidemiological data point to a peaking of infections in 83/84 and a rapid drop after that date.... (from 3,000 - 4,500 in 83/84 to national estimates of 600 new infections of HIV in 1988-1990). The behavioural data available in Australia support the clinical and epidemiological data. The figures look good - at least as compared with other countries.

    A number of questions remain: for example, there are new infections each year, where are these new infections occurring? men who have sex with men? amongst heterosexuals? or amongst injecting drug users? Where should future education programs and campaigns be directed?

    It is fair to say, however, that Australia has got a great deal of it right. SOMETHING is working ... or we would be in a much worse position than we are now. A reasonable hypothesis is that the education programs and campaigns (or some aspects of them) worked and continue to work - and that in response to the educational programs some people did and are continuing to modify their behaviour - their sexual behaviour and their drug injecting behaviour.

    In this paper I explore this hypothesis with reference to behavioural data on sexual practice. I will also use the behavioural data to explore the processes underlying behavioural change by demonstrating which prevention strategies have been adopted and by whom, and which prevention strategies appear to have missed their mark.

    Behavioural Data

    First a very brief account of the major findings of some of the Australian behavioural studies - with reference to two populations - men who have sex with men and heterosexual men and women.

    Gay and Bisexual Men

    The dominant approach in HIV prevention efforts among gay and bisexual men in Australia (and elsewhere such as the US) is to encourage the adoption of safe sex practices by the widespread dissemination of AIDS risk reduction information, focused group interventions to demonstrate ways to criticise safe sex, and the use of group norms and social support to motivate behaviour changes. These efforts began, in Sydney, in 1983 and 1984 - largely by the gay community - the AIDS Action Committees - which later (in 1985) became the AIDS Councils (Ballard 1989; Dowsett et al. in press).

    It is important to recognise that from the start the national response to the epidemic in Australia involved three groupings: 1) Federal and State governments; 2) the non-government sector, initially and predominantly the gay communities' AIDS organisations, and 3) health professionals and researchers. Although the Commonwealth was responsible for the national mass media education campaigns both it and the State governments funded non-government organisations to develop educational programs for at-risk populations and groups. Such targeted programs were funded from 1984 onwards.

    If we begin with the studies with which I am most familiar - the Social Aspects of the Prevention of AIDS Project (series of studies 1986/7 and again in 1991) - which analysed the sexual practices of a diverse sample of men who have sex with men in New South Wales . This sample included young and old, professional and working class men, men from the inner and outer suburbs of Sydney, from rural centres in NSW and from the ACT, and it was not simply a sample of gay community attached men. What we know about these men is that:

    These findings have been replicated in Melbourne - and overseas, in New York, San Francisco, Chicago, Amsterdam, London… The educational efforts have been highly successful and, as the behavioural data from here and overseas demonstrate have resulted in the most profound modifications of personal health-related behaviours ever recorded. (Stall and Ekstrand, 1989; Ekstrand & Coates, 1990; Connell et al. 1989; Adib, Joseph, Ostrow & Sherman, 1991; Kippax et al. 1992). In particular they demonstrate the success of informed social support in bringing about behaviour change. More and more studies are reporting that interpersonal and social variables are among the most important in the adoption and maintenance of safe sex.

    Heterosexual Men and Women

    Educational programs directed at heterosexuals did not come on line until 1987. The Grim Reaper began the national mass media education program. The target of this and the following national media campaigns, the 'general' population, was, by definition, heterogeneous diverse and diffuse. The educational task was made wore difficult by the small number of heterosexual HIV transmissions.

    The behavioural data on heterosexual sexual practice reflect the difficulties of reaching this diffuse target. Heterosexuals are alerted to HIV and AIDS but many of them believe that the problem of HIV infection is not theirs - but belongs elsewhere.

    Much of the data on heterosexual men and women with regard to sexual activity in the context of HIV and AIDS is confined to tertiary students. Since 1987 data have been collected each year from random samples of students as well as from first year student intakes into certain faculties and disciplines in Universities up and down the east coast of Australia. This data collection is currently being extended to TAFE Colleges in NSW and to Australian secondary school students.

    Briefly what these data indicate is:

    As well as indicating whether the education programmes have worked or not - and with whom they have worked - the behavioural data indicate which prevention strategies have been endorse, adopted - and by whom.

    Education Programmes/Media Messages

    Major education programmes and campaigns (not only the national media campaigns but also those developed by the AIDS Councils, and community groups, … funded by the federal and state government bodies) have advocated a number of strategies. These I have called 'education programmes' (see overhead). As well these educational programmes there have been a number of strategies advocated (often not explicitly) by media commentators and media news reports - I refer to these as 'media messages'. There is a third act of strategies to which I refer - I have called these 'other strategies'.

    Education Programmes

    Education programmes (national, state and local) have advocated the following:

    1. use of condoms for penetrative sex;

    2. avoidance of unsafe sexual practices, especially unprotected anal intercourse and unprotected vaginal intercourse. (It in interesting to note that although gay men have been asked by some to forgo anal sex, the avoidance of vaginal sex, as distinct from 'sex' has not been explicitly recommended);

    3. the adoption of safe forms of sexual expression such as mutual masturbation;

    4. the encouragement of talk and negotiation, and honesty within relationships. Such talk and negotiation is an essential adjunct to HIV prevention strategies. An accurate knowledge of a partner's sexual and drug using history way be a useful adjunct to safe sex, although education programmes have pointed to the pitfalls of simply relying on knowing one's partner; and

    5. reduction in the number of sexual partners. This strategy is often confused with (6).

    Media Messages

    These major education programmes have been 'supplemented' by a number of strategies which are implicit in much media coverage of the issues around HIV and AIDS. The major prevention strategies which are advocated, either explicitly or implicitly, by much of the media are:

    1. monogamy or reliance on 'regular' partner or serial monogamy. Monogamy is advocated, both explicitly and implicitly, by the many messages which suggest that only the promiscuous get HIV/AIDS;

    2. selection of 'clean' partners. This strategy in associated with the one above. HIV is associated with promiscuity and with being a 'slut';

    3. avoidance of 'risk groups'. This strategy is implicit in the term 'risk group' itself as well as talk of deviance, the 'gay plague', and in calls for isolation and quarantining. It is also implicit in the medical/epidemiological definitions of transmission categories - homosexual, bisexual, heterosexual, drug user. What does bisexual transmission mean? (It and (7) are the basis of HIV-related discrimination and prejudice); and

    4. reliance on mass testing.
    Other Strategies

    There are two other important strategies - the sources of which i cannot identify:

    1. the reliance of HIV zero-status; and

    2. celibacy. The source of this was perhaps Ita Buttrose.
    Problems in the Strategies

    Are these strategies rational - in the sense that if individuals incorporate them into their sexual practice they will be effective in the prevention of the transmission of HIV? And what problems are people who adopt them likely to face?

    Strategies from Education Programmes

    1. Condom use is an extremely effective strategy in preventing HIV transmission, although it is not 100% safe because of problems of breakage.

      There is among some groups some resistance to condom use particularly the sexually inexperienced. Introducing condom use into an ongoing monogamous or 'regular' relationship is extremely difficult as it may be perceived an indicating lack of fidelity and/or trust. This is especially true for heterosexuals.

    2. Avoidance of anal and vaginal intercourse is an effective strategy but one that may be difficult to sustain. Many heterosexuals equate sex with vaginal penetration, so for some avoidance becomes celibacy. For many men and women (both in homosexual and heterosexual partnerships) intercourse is the corner-stone of intimacy and love as well as the most physically satisfying of the sexual repertoire.

    3. Adoption of safe sexual practices is an effective strategy in the sense of preventing HIV transmission but one that might be difficult to sustain for the reasons given in (2) above. There is also the problem of the uncertainty of the safety of oral-genital contact.

    4. All of the above strategies depend for their success on talk and negotiation. This appears to be more of a problem for heterosexuals than for homosexual men because of the taken-for-granted nature of heterosexuality (it is assumed that there is nothing to discuss, it just is). For some men who have sex with men, however, it may be a problem particularly the newly homosexual, the young, and men who are not socially connected to other gay men or gay culture. For heterosexuals such talk and negotiation may be difficult because of the unequal power relations between men and women, and because there is no language (except medical or porn) to use in discussions of sex.

    5. Partner reduction will reduce risk of transmission particularly in populations where the incidence of HIV in high. Its adoption will not however prevent transmission.
    Media Strategies
    1. Reliance on monogamy (or serial monogamy) in and of itself is not a rational strategy. Restricting sex to one's monogamous partner is safe if and only if self and partner are HIV zero-negative. (Note: this strategy is rational on a population basis but it is not rational as an individual one. If everyone were absolutely monogamous then those who were zero-positive would infect their partners and no one else - eventually HIV would disappear). In the case of serial monogamy or reliance on a regular partner a further problem is what is meant by 'regular'. For many people, both heterosexual and homosexual, a regular partner is someone with whom one has an exclusive relationship for anything from one week to forever. There is also the problem that in some cases what women see as 'regular' relationship, men see as 'casual'. This strategy is effective only if the partners know that each is zero-negative and the relationship is based on honesty (see 10)

    2. Selecting 'clean' partners is not a rational strategy; one can not tell whether someone is infected by looking at them.

    3. Avoidance of people assumed to belong to one of the 'risk groups' is also not a rational strategy. Being able to tell whether someone is an injecting drug user or not will not necessarily prevent transmission. The risk does not reside in the identity of the person but in whether one engages in safe or unsafe practices. In the case of 'bisexual men' when a woman has sex with a man (who also has sex with men), she has heterosexual sex - not bisexual sex. Having sex only with someone you believe is heterosexual will not protect you.

    4. Reliance on mass screening is an irrational strategy unless the persons so tested are marked in some way to identify them as HIV zero-positive. Further, the testing of the population would have to be continuous …
    Other Strategies
    1. This strategy of reliance on HIV status is a rational one if both persons are zero-negative and if both partners are faithful OR if both partners are zero-negative and if both partners have safe sex outside relationship. The strategy is only effective where there is honest negotiation.

    2. It is a rational strategy but one perhaps that is difficult for most people.
    Prevention Strategies Endorsed and Practised

    Which of the above strategies have been adopted or endorsed? and by whom? which populations or groups?

    1. Behavioural data indicate that condom use has been adopted as a prevention strategy by many men who have sex with men, particularly gay men who have the social support of other gay men, and who have a good understanding of unsafe sexual behaviour. Data from the tertiary student studies indicate that although there is not widespread adoption of condoms, there in a very small increase in condom use among younger heterosexual students especially in casual sexual contact.

    2. Data indicate that some men who have sex with men are avoiding anal intercourse, at least on some occasions and in come contexts - particularly in casual sexual encounters. On present evidence, there have been no similar moves amongst the heterosexual population with regard to vaginal sex.

    3. Amongst men who have sex with men, the second strategy is often accompanied by the adoption and elaboration of safe sexual practices. There is no evidence that there has been an elaboration of the sexual repertoire of heterosexuals or that non-penetrative sex has replaced vaginal intercourse amongst heterosexuals.

    4. Data from men who have sex with men indicate that many of these men have developed understandings, arrangements, and contracts about safe sex with their partners. The talk itself has led to a change in the everyday understandings of these men, the taken-for-granted in which these men operate has changed. A 'safe sex' culture has developed. One has to explain why no condoms if having anal sex, not why condoms. This has not occurred amongst the heterosexual population as far as we can tell. Some sexually experienced heterosexuals find negotiation manageable, for others it appears to be extremely difficult.

    5. Many gay men have reduced the numbers of their sexual partners in response to HIV. There is little data on heterosexuals.

    6. Monogamy and/or reliance on regular partner (aerial monogamy) has been endorsed and adopted by some men who have sex with men. It has been endorsed particularly by men who are not socially supported by other gay men and/or who do not have the detailed understanding of safe sexual strategies, that is, they are unsure of what they can do safely. The strategy is also the one favoured by most of the tertiary students. There is a widespread belief that one's regular partner is 'safe'.

    7. There are data from both studies of heterosexuals, and homosexuals which show that this strategy of selecting 'clean' partners is endorsed and practised by some men but not women. Some gay men are changing the places where they meet or pick up men, for example. it is difficult to estimate how widespread the practice is amongst heterosexuals, but Chapman et al. showed that some young men believe that they can pick 'clean' women. It is also widely acknowledged that at the recent Meeting of the World Bank in Bangkok last Year a call went out for 500 clean women to service the conference participants.

    8. Avoidance of members of so-called 'risk-groups' is widespread. Recent studies examining HIV-related discrimination in the Australian Population found that social avoidance of a range of 'risk-group' members was endorsed a small proportion of the sample - particularly by men.

    9. This mass testing strategy is beyond the control of individuals. But mass screening is favoured by some tertiary students particularly women.

    10. This strategy, based on the knowledge of one's sexual partner's HIV zero-status, is one that is being practised by a large number of gay men. The strategy is being used in conjunction with contracts about fidelity or the avoidance of anal intercourse and/or condom use for anal intercourse outside the relationship. Many men in regular relationships are using their zero-negative concordant status to arrive at prevention strategies which protect them and their partners. There is no data for heterosexuals.

    11. I am not aware on any data on the use of this strategy.
    Successful Campaigns

    Gay and Bisexual Men

    When we compare the strategies advocated with the strategies .adopted, then it in clear that for MANY gay and bisexual men strategies (1), (2), (3), (4), (5) and (10) have been successful. The something that is working are the education programmes developed and managed in the main by the AIDS Councils and gay communities themselves, and funded by governments.

    It is also fair to say that the education campaigns have not reached all men who have sex with men but from the data we have at present, it appears that those who have not been reached include those men who live in rural communities and those who do not have the informed social support necessary to enable them adopt these strategies. There is evidence to indicate that some men are still reliant on the assumed safety of their regular or monogamous partner.

    More data is needed as to which men are being missed and how they may be reached. Such data is currently being collected via a national phone survey of men who have sex with men MALE-CALL.

    Heterosexual Men and Women

    The success of the education campaigns with regard to the heterosexual population is far less certain. Heterosexuals are knowledgeable about modes of transmission and although there seem to be some small success with regard to condom use, there is no widespread behaviour change.

    Heterosexuals have been far more willing to take up the more comfortable messages from the media which in general free them from worrying about HIV transmission.

    Future campaigns focused on heterosexuals will have to combat much of the information. They will also have to narrow their sights and aim their educational programmes at particular cultural and sub-cultural groups in the heterosexual population.

    Conclusions

    1. The behavioural data indicate that education programmes have been successful - at least in certain instances and with certain populations;

    2. The Australian population is reasonably well informed although a number of myths survive.

    3. With regard to changing sexual practice, the big successes are amongst gay men - particularly those who have been easy to target. The changes that have occurred have occurred at the cultural level; the social norms have been changed.

    4. Such successes indicate the social and interpersonal processes which underlie behaviour change. These processes may well form the basis of future education campaigns focused on populations which have not been reached in the past.

    Behavioural research not only provides a marker of behaviour change (alongside epidemiological and clinical data) but, at its best, it can provide an understanding of the processes underlying such behaviour change. Education is the best defence against HIV transmission and I hope that one of the outcomes of this conference is a clarification of the many complex issues surrounding prevention and education.

    Gabrielle McCarthy
    Co-ordinator of People Living with AIDS (NSW) an Incorporated Community Association

    Conference Paper: AIDS - Have we got it Right?
    A conference organised by The Australian Doctors Fund Ltd.
    Hosted by Professor Fred Hollows & ADF Chairman Dr. Bruce Shepherd
    Sheraton Sydney Airport Hilton
    May 14th and 15th, 1992

    My name is Gabrielle McCarthy, I am HIV positive.

    I'd like to begin with a quote from Professor Hollows' article in Tuesday's Herald, "If one life, whether Aboriginal or non-Aboriginal, can be saved as a result of this process (the AIDS debate) then I will consider my efforts to have been worthwhile".

    It is for exactly the same reason that I have chosen to be openly HIV positive, it is the reason why I'm here today. Having been infected with HIV whilst in a monogamous heterosexual relationship. I feel a great need to tell my story. To tell people that HIV is real, that it can happen to anyone.

    Heterosexual transmission is again being questioned. I have been accused of lying about how I was infected. I have had to defend my integrity constantly. I'm tired of being told I don't exist. Heterosexual transmission does happen.

    Questioning heterosexual transmission implies a desire to link HIV with only those risk behaviours that are considered 'socially unacceptable'. HIV positive women already find it difficult to access services, we don't need the increased stigmatisation that results from these arguments.

    I quote Professor Hollows from the same article, "I trust that, when the smoke clears, the suggestions I have made will have revitalised the AIDS debate in this country and properly focused it".

    I have to wonder how this is to be achieved when the debate leading up to this Summit has been no less emotive and sensationalised than previous debates. The combination of sex. death and homosexuality continue to provide fodder for a debate that appears to canvas only hysterically expressed moral opinion.

    AIDS is a dream come true for the media. No less so because individuals cannot resist the opportunity for political point-scoring. I hold Professor Hollows and the Australian media culpable for further muddying the waters of the AIDS debate.

    Hollows first captured the media' s attention with his speech at the opening plenary of The First National Aboriginal AIDS Conference. A quote from the conference commendations states, "That this conference rejects the damaging statements by Professor Fred Hollows regarding the quarantining of Aboriginal people living with AIDS. His statements which received sensational media coverage were informed and harmful to the positive education strategies currently being used by Aboriginal people".

    It is a damning indictment of both Professor Hollows' and the media's commitment to a 'revitalised and focused' AIDS debate that they carried on regardless.

    Hollows effectively discredited any opposing opinion by attacking the gay community, so-called AIDS profiteers and bureaucrats. Perhaps the fine points of a one sided debate eludes me, but I fail to see how any issues can be debated without canvassing a broad range of opinion and expertise. Nor by excluding the affected communities.

    He accuses the 'gay lobby' of hijacking the AIDS debate - ironic from a man who appears to have hijacked the debate pretty thoroughly over the past two months.

    Australia's response to the AIDS epidemic is recognised internationally for its effective prevention strategy. A strategy developed by the gay community and the Commonwealth Government. The gay community should be thanked for accepting responsibility for containing the epidemic, not attacked.

    As the community most deeply affected by this epidemic (90% of people with HIV or AIDS in this country are gay men), no reasoned debate can exclude them.

    AIDS debate in Australia has consistently discredited attempts by the gay community to promote a rational debate of the broader issues. They are dismissed as attempts to move the 'blame' away from the gay men.

    Whilst the AIDS debate in Australia continues its poofter bashing, gay men continue to fight the virus. The dreadful toll that AIDS will take on the gay community has yet to be fully felt.

    As I speak gay men continue to provide services, work as volunteers, care for sick friends and raise money for services that aren't funded by the government. They do this in the face of continuing discrimination and despite ongoing attacks.

    Since my diagnosis I have received a great deal of support from gay men. Most of the services that I access were established by and continue to be supported by the gay community. The gay community is the only consistent source of support for my community - the HIV community - regardless of who we are.

    The HIV community has also been attacked by Hollows, I quote once again from Tuesday's Herald. "Those who have AIDS must be asked the hard question: whom have you given AIDS to?". Suggesting that people with HIV are wantonly spreading the virus supports his argument for quarantining, but ignores the facts. Most people with HIV do not behave irresponsibly. If they did there would be a far greater rate of new infections.

    Placing the blame on particular groups only makes it easy for people to abdicate responsibility for their own health. Having someone to blame doesn't prevent HIV. a fact I know only too well.

    HIV is very easy to avoid.

    There has yet to be a reasoned, factual debate on AIDS in the general community. Once again the gay and HIV communities are the scapegoats, once again the wider community loses the opportunity for a sensible discussion of the facts.

    Sensationalising the debate is too easy. Targeting the gay community and people with HIV and AIDS only provokes an emotive and discriminatory response. The media appears only too happy to jump on the bandwagon, their response continues to be characterised by an avoidance of real facts and real issues.

    When AIDS is discussed in such simplistic terms the only winners are those with a political agenda. The gay community only suffers increased stress and discrimination. My community, the HIV community suffers increased stigmatisation and discrimination. And the wider community continues to needlessly place themselves at risk because they believe misinformation spouted from so called respectable members of the community.

    Have we got AIDS right? I say no. The gay community, the HIV community the Commonwealth have gone a long way in the right direction.

    I hope one day that the entire community's response to this epidemic equals that of the gay and HIV communities then maybe we will have got it right.

    As is so eloquently expressed by a quote from the NSW ADB report on the enquiry into HIV/AIDS related discrimination, "It is the tragic irony of HIV and AIDS that while people discriminate the virus does not".

    For a long time the fear of stigmatisation and discrimination have prevented me from speaking out. Many people have told me how brave I am for speaking here today. I'm not being brave, it isn't a matter of choice. I can no longer remain silent, the issues are too important, people's lives are at stake.

    Professor Peter J Mc Donald
    Microbiologist and Infectious Diseases Physician

    Conference Paper: AIDS - Have we got it Right?
    A conference organised by The Australian Doctors Fund Ltd.
    Hosted by Professor Fred Hollows & ADF Chairman Dr. Bruce Shepherd
    Sheraton Sydney Airport Hilton
    May 14th and 15th, 1992

    Mr Chairman, this presentation reflects my personal views and not necessarily those of the CARG which I chair nor of ANCA with whom I have been privileged to work for the last 3 years.

    The first point I wish to make is that AIDS is the end-stage of infection caused by HIV and that we must follow the principles of I.D. control in containing this pandemic.

    There is currently misleading intellectual joust that HIV unrelated to AIDS and that AIDS is a consequence of lifestyle factors that are confined to gay men, drug users and persons from the third world. This contention ignores the clear evidence that HIV in blood products has infected thousands world-wide, that progression of disease with HIV is directly related to virus-induced changes in the immune system, and that anti-retroviral (HIV) treatments have, slowed the progression of disease and prevented death for many years.

    The key factor about HIV is that it is a virus that is transmitted by private behaviours and that the traditional approaches of Infectious Disease control aimed at the prevention of transmission by aerosol (as with T.B.) or by fecal-oral spread (as with typhoid) are wt directly applicable to HIV.

    HIV is related to AIDS in the same way that mycobacterium T.B. is related to tuberculosis. Tuberculosis is a disease carried by the body's reaction to the mycobacterium and only a small percentage of people infected with mycobacterium T.B. actually develop tuberculosis. The control of Tuberculosis requires control of the mycobacterium. AIDS is a disease caused by the body's reaction to HIV and there have been fluctuating views as to the lethality of HIV. In 1986 (slide) there was a perception, based on reasonable scientific grounds at the time that HIV was a retro-virus that had moved into the human race as a single mutation from primates and that HIV would behave like most viruses. Most viruses and bacteria do not kill the host they infect: this is not in the long term interests of survival of the virus or bacterium. T.B. is a good example of a bacterium that infects many people but causes serious illness and death in only a minority of the people who are actually infected - as demonstrated by scars on chest x-rays or a positive skin/mantoux test.

    It was therefore not unreasonable to say in 1986 that HIV infection would not always progress to AIDS. Many in this audience will recall predictions that only 5 - 10% of HIV infections would progress to AIDS and great emphasis was placed on identifying those lifestyle, nutrition and therapeutic strategies that would boost the immune system to resist the virus progressing to AIDS.

    In the event it became clear that HIV progressed to AIDS in a large proportion of infected persons. This conclusion was based on the type of analyses shown in this next slide where the only longitudinal studies of various cohorts of infected people that have been conducted would not have been analysed to show that after 8 years from infection, between 20% and 50% of infected people will have progressed on to AIDS. (Now) Once AIDS is established I think there is general agreement that death from HIV will ensue although newer treatments are retarding death.

    The important factor I wish to convey from this slide is that the predictions from these studies have been translated into a perception that all people infected with HIV will die prematurely with AIDS in contrast to the 1986 prediction, that projected that only a small proportion of HIV infected people would die of AIDS.

    The truth undoubtedly lies somewhere in between: my own bias is that some people infected with HIV over 10 years ago are remaining well and that there may be some survivors - of the order of 10% - 20%.

    I present these facts to underscore a major difficulty in the AIDS debate - namely a propensity to jump to conclusions in the absence of sound information. I think there is a public and oven professional propensity to seize upon those scientific and pseudo-scientific interpretations that support particular views, fashions or attitudes that are not justified on the basis of the, actual data.

    We should acknowledge that there are several unresolved issues in relation to HIV/AIDS. It is crucial to take these into account when devising policies to manage the epidemic. These unresolved issues are depicted on the slide viz:

    Given the imperative of stopping transmission of a lethal infectious agent that is spread by private behaviours that are not able to be constrained by the traditional/conservative approaches to I.D. control of aerosol and fecal/oral transmissions and given the uncertainties referred to in the slide it becomes easy to understand how particular groups may seek to hijack the policy agenda.

    The position I would like to develop is that there are enough facts about HIV to develop firm policies for control of spread that recognise - the principles of I.D. control whilst taking account of the variable/unknown factors, and the social context within which infection is spread in Australia. An additional point is that the Australian clinical, social and epidemiological networks are well placed to answer some of these questions and to continue to provide international leadership.

    The principles of I.D. control are illustrated on this next slide and I would like to comment on each

    How do these translate into HIV in Australia - and have we got it right?

    In terms of identifying infected and infectious you have heard about the epidemiology strategy and how we are in a position to concentrate on those who are infected and their direct contacts.

    A key factor in the epidemiological network is the testing programme which has been criticised because of the lack of compulsion. In fact 3.5 million tests have been done per year in the last 2 years and this has lead to the present state of knowledge about where infection is in Australia. The key factor which is being pursued by EAC is to ensure that sentinel testing of key risk-groups is sufficiently comprehensive. This I can assure you is receiving priority attention and the emphasis is on achieving comprehensive testing in the most appropriate way. The fact that this is being achieved in a climate of respect for individual rights and insistence upon consent is a tribute to those involved and an indication that community involvement in programmes may actually achieve greater penetration than compulsory programmes.

    A note of caution should be raised about individual doctor-driven testing. At Flinders Medical Centre I was surprised to note that 36% of all HIV antibody tests were for ante-natal patients and more such patients were tested for HIV than for Rubella. This is because of a policy that does not repeat Rubella tests in those with a previous high titre.

    This sort of information begs the question - Are we testing the right people? I cannot fully answer this question but I suspect that we are doing too many tests on the wrong people(like elderly ladies having hip replacements) but I am comfortable with the efforts of the Epidemiology Advisory Committee that is responsible for ensuring that adequate surveillance systems are in place, and there is a strategy paper available to members of this audience who wish to be provided with details.

    The second principle - namely preventing transmission from those who are infected is the area where most success has been achieved. This has been largely dealt with by other speakers and I only wish to underline the importance of having easily accessible treatments so that those at risk can be exhorted to seek testing and are in treatment programs they can participate in specific education programmes that contain spread from such people.

    The third principle - and the arms where we must now place emphasis whilst maintaining the initiatives previously outlined, are listed on this slide. There are the difficult ones that require major professional and community change if we are going to the early success of the HIV/AIDS strategy.

    Since others are addressing these issues I will concentrate on the major barriers that I believe need to be addressed.

    Firstly the infrastructures for I.D. had been largely dismantled by 1980 and we have had to set up entirely new I.D. structures for HIV - a good example is epidemiology. This next slide compares the physicians in I.D. with other speciality disciplines. Why have we failed to train sufficient numbers of I.D. physicians? Perhaps more importantly, why have we accorded second class status to venereology in terms of training, practice and professions recognition? To the best of my ability I am only able to identify 45 practising venereologists in the country. It is no good complaining about difficulties in treating HIV/AIDS as an infectious disease without providing staff and training to support programmes. I.D. and venereology must receive a high priority.

    Further barriers in HIV are the poor level of HCW education and practice of I.D. This is related to the small numbers of staff and the paucity of education in the area. Perhaps this explains the substantial difficulties in applying universal precautions.

    Sex and discrimination are being addressed by other speakers but I would like to highlight a major barrier that I perceive, and that is the difficulty of planning and implementing strategy in a rapidly changing environment. The only solution is to promote good communication and consultation and to be prepared to adapt to the new circumstances. This is difficult to achieve, in a rigid health system and amongst an essentially conservative medical profession.

    How can we move forward?

    I believe that research is a key and I will briefly outline the situation with Commonwealth AIDS Research.

    The actual allocation of funds is outlined on the next 2 slides.
    1. The three national research centres each received in excess of 1 million each in calendar 1991. About 10% of the research budget is allocated to fellowships or training and 3.5 million to projects.
    2. The number of applications and financial allocations in project grants are indicated on this next slide. I would like to draw your attention to the small proportion of grants funded in relation to the actual number of applications shown in brackets.
    Is there enough money for research? and how should It be managed? Yes and No.

    I have been disappointed that some major research groups have not focuses on AIDS research for example mucosal immunologists, health economists and social historians. I do not believe this is entirely due to a lack of funds but more a lack of resolve or commitment. In the long term I believe AIDS research should be mainstreamed into standard research system - but not until programs have been consolidated and the credibility of AIDS research firmly established.

    Have we got value for the research dollar? The answer must be yes because AIDS research has set up essential epidemiological clinical and social programmes that have underpinned the success of AIDS control to date in Australia - if I had more time I could go into specifics.

    I would like to conclude by indicating those areas where we need to focus to go into the stage of HIV control beyond condoms and needles. These are listed on the slide and they are self evident.

    The key issues we need to emphasise and these are already underway are

    My concluding plea is that the lessons learned from HIV/AIDS should he extended to the health care system as a whole. Otherwise our effort will be wasted and we will lay ourselves open to explosion of diseases like T.B. and Syphilis in New York which are both eminently treatable conditions in the traditional medical model but they only spread because the disenfranchised communities rebel with anti-social and unhealthy behaviours.

    Locking people up in prison for drug offences has not reduced the drug problem - and prison is quarantine. We need to recognise that the solution to social problems that produce disease is to work with those who are disenfranchised to improve their lot. Maybe love thy neighbour is a reasonable strategy!

    The Life Insurance Industry
    Peter Ramjan

    Conference Paper: AIDS - Have we got it Right?
    A conference organised by The Australian Doctors Fund Ltd.
    Hosted by Professor Fred Hollows & ADF Chairman Dr. Bruce Shepherd
    Sheraton Sydney Airport Hilton
    May 14th and 15th, 1992

    The Life Insurance Industry is one of the major financial industries operating in Australia. The industry currently invests in excess of $85 billion per annum and insures over 9 million policy holders or about 50% of the full-time working population.

    In 1991 the Life Insurance Industry paid over $685 million in claim benefits to widows, widowers, beneficiaries, retirees or individuals who suffered a sickness or accident.

    The Industry plays a vital role in the community providing security and financial comfort to policy holders and their families whilst investing billions of dollars in the Australian economy. Investments which provide jobs for large numbers of Australians.

    In addition to the economic benefits provided by the industry it also performs an important community role by alleviating the drain on public funds in the event of death, retirement, sickness or accident.

    Before we address the question of "AIDS - have we got it right?" it is important that you have a good understanding of how the industry works. Let me demystify how the Life Industry works.

    A Life Insurance company is no different to any other commercial enterprise operating in the service industry. It attempts to win and retain customers by providing a high level of service whilst endeavouring to generate a satisfactory profit for its Shareholders.

    A Life Insurance company collects a group of individuals called policy holders, and collects from each of them a particular amount of money called a yearly premium. The money is put into a pot and this pot is filled. Out of that pot is taken money to provide claim benefits, pay employees wages and pay commissions to agents. At the end of each year, the money left in the pot is the Shareholders profit.

    But what happens if at the end of the year there is no money left in the pot because claim benefits were greater than expected?

    The answer is really very simple - keep the same number of policy holders and buy a bigger pot for them to fill. In other words, charge each individual more money for their insurance.

    What happens if at the end of the next year there is still no money left in the pot because claim benefits were again greater than expected? Buy an even bigger pot, of course!

    If an individual or a group of individuals receives more than their share of claim benefits it will be at the expense of all the other insured individuals. When an individual or group of individuals receives more than their share of claim benefits it is usually as a result of what is called anti-selection. Anti-selection is where the policy holder is aware that they have a far greater chance of claiming than the average individual but does not disclose this to the insurance company.

    Anti-selection places an enormous financial burden on all policy holders. Anti-selection could represent up to 80% of all AIDS claim benefits paid.

    Statistics that clearly show anti-selection is taking place include:

    The Life Industries Response to Anti-Selection

    From a Life Industry perspective, it is not how or where AIDS started that is important, but how does the industry cope until a cure is found. The Life Industry must continue to serve the majority of its policy holders and remain viable in the face of massive claims which may result from the AIDS epidemic.

    In the year ending 30the June, 1991 the Insurance Industry saw a massive 47% increase in the total AIDS claim benefits paid. The industry has paid $31.8 million in AIDS claim benefits as at 30th June, 1991.

    The industry has tried to eliminate anti-selection by treating AIDS identically to any other serious medical condition. We currently take into account whether a person is suffering from or has an increased risk of suffering from Cancer, Diabetes or Heart Disease so it is only reasonable that we should also take into account whether a person is suffering from or has an increased risk of suffering from AIDS.

    There are two ways we determine whether a person is suffering from or has an increased risk of suffering from AIDS. Firstly, all individuals are required to answer questions, or sign a declaration, confirming they do not have AIDS or any of the recognised symptoms of AIDS. They must also confirm that they do not engage in activities which represent a significantly above average risk of infection. Secondly, all companies require a mandatory HIV antibody blood test to be performed at certain sum insured levels.

    To ensure an individual who is requested to undergo an HIV antibody blood test fully understands the implications of having the test and what is required, the Life Industry developed a brochure titled "What does an AIDS test mean to me?"

    The brochure clearly and simply sets out:

    The Life Insurance Industry via the Life Insurance Federation of Australia has adopted a responsible and sensible approach to the AIDS problem by implementing a code of practice that all Life Insurance companies comply with. The code states in part:

    "no adverse decision should be based solely on:-

    1. The known or suspected sexual orientation of the proposed insured.
    2. Previous consultation about HIV infection, or testing for it with a negative or unknown result.
    3. A positive HIV result, unless it is from a laboratory and procedure approved by the Commonwealth Department of Community Services and Health."
    A third method of preventing anti-selection has recently been introduced by the industry. For group life plans, this involves an ineligibility period for AIDS claims. For disability insurance there is now a choice of an AIDS excluded policy or a policy with full AIDS cover. The AIDS excluded cover offers a discount on the premium because no claim benefit will be paid in the event of the individual suffering AIDS.

    AIDS and Insurance

    There have been a number of Lobby Groups and Committees who have considered the issues of AIDS and Insurance. Some of the comments made by certain groups have highlighted a complete lack of understanding of the basic principles that underpin the financial viability of Life Insurance companies. In other words, they just have not done their homework and as a result their comments are ill-founded. The other alternative is that they are operating with a hidden agenda.

    A typical example of this is the recent report into HIV and AIDS Related Discrimination undertaken by the New South Wales Anti-discrimination Board. It is bitterly disappointing to see the New South Wales Anti-discrimination Board make recommendations to the New South Wales Government on Superannuation and Insurance without even consulting with the Life Insurance Industry body.

    How an independent body can confidently make recommendations to the New South Wales Government without first having fully investigated the alleged incidents with the Life Insurance Industry is beyond my comprehension.

    The main areas of the report that cause me concern are:

    1. The statements that:
      • "unwritten policies: decisions to refuse insurance or superannuation may be made on the basis of policies (for example, insurance will not be offered to a man perceived to be gay) without this (policy) being made explicit."
      • "stereotypes: decisions may be made on the basis of stereotypical assumptions about applicants (for example, an unmarried male over thirty-five living in the inner city may be assumed to be gay)."

      These statements are at complete odds with the AIDS code of practice laid down by the Life Insurance Federation and followed by all Life Companies. The code states very clearly that no adverse decision should be based solely on the known or suspected sexual orientation of the proposed insured.

    2. The statement that:
      • "There are no Codes of Practice relating to forms of insurance other than life insurance: for example, travel insurance, disability insurance, income protection insurance."

      This statement is manifestly incorrect: The Code of Practice applies to life insurance, disability insurance and income protection insurance.
    3. The statement that:
      • "A further matter for concern is the questions insurance companies ask policy proposers about ever having sought a medical consultation or investigation about AIDS related conditions, having had a test for HIV antibodies."
        "Indeed the questions themselves may act as a disincentive to prospective policy holders seeking medical advice."

    The Code of Practice is once again very explicit on this point. It states that no adverse decision should be based solely on previous consultations about HIV infection, or testing for it with a negative or unknown result.

    To suggest that the questions themselves may act as a disincentive to prospective policy holders is an absolute nonsense. It is akin to suggesting that because a Life Insurance Company asks, have you received treatment for chest pain, hypertension or blood in sputum, that it will act as a disincentive to prospective policy holders seeking medical advice for these conditions. This is not, and never has been, the experience of Life Companies.

    Finally the report concludes "The Insurance and Superannuation industries have been slow to respond to HIV and AIDS in an appropriate way."

    The industry introduced a Code of Practice in April 1988, produced and currently uses a brochure on what an AIDS test means for an individual, introduced questions into the application for insurance to identify individuals who have the AIDS virus or are significantly above average risk of infection. The Life Industry has basically treated AIDS as being identical to any other serious health problem an individual may suffer.

    On the basis of this I don't believe any reasonable person could concur with the conclusion of the report.

    The Future

    The AIDS epidemic is the greatest challenge the Life Insurance Industry has faced in the last half century. AIDS has the potential to bankrupt the largest Life Insurance company in Australia if Life companies are prevented from applying the general principles of risk classification and the setting of premiums.

    I believe there are only two likely scenarios.

    Scenario one is where lobby groups continue to threaten the very essence of Life Insurance business resulting in the financial viability of Life companies being destroyed. This will mean ordinary citizens will be unable to obtain Life Insurance.

    Scenario two is where Life companies continue to maintain a responsible and sensible approach to AIDS and the general principles of Life Insurance are adhered to resulting in the financial well being of policy holders being maintained.

    "AIDS - HAVE WE GOT IT RIGHT?." Only the future holds the answer.

    Ms Jennifer Ross
    Executive Director of the Haemophilia Foundation of Australia
    May 1992

    Conference Paper: AIDS - Have we got it Right?
    A conference organised by The Australian Doctors Fund Ltd.
    Hosted by Professor Fred Hollows & ADF Chairman Dr. Bruce Shepherd
    Sheraton Sydney Airport Hilton
    May 14th and 15th, 1992

    Words that mean different things to different people, depending upon the perspective from which they stand. For a person living with HIV, AIDS programmes can never be "right". Provision of all the services, and education that unlimited funds could allow will still not take away the virus and its terrible ramifications for the person with HIV, their family and immediate friends.

    I would like to comment briefly on Australia's stance in combating this virus in general, before moving on to speak from the perspective of people with haemophilia.

    In general the Australian Government's response to containing the spread of HIV has been outstanding. It was clear as I attended International AIDS Conferences in 1986, 87, 88 and 89 that Australia, together with the Netherlands, was at the forefront of the fight against this virus. Participation in World Health Organisation Global Programme on AIDS workshops with a wide range of participating nations in 88 and 89 confirmed this.

    From 1984 the Australian Government:

    As a result we see in Australia today:

    The obvious contrast to our situation is the USA, where programmes and services were delayed over many years. The results are thousands of infections in the poor, particularly in the black community. The USA health care system cannot and will not be able to cope with the outcome of this slow Government response to HIV.

    Sadly, it appears we in Australia are to be penalised for our success. High profile Australians like Fred Hollows and Philip Adams, while working towards the same objectives as Governments and community groups, tear down public confidence in the need for education programmes.

    This is dangerous indeed, as complacency will replace questioning in our young people, and funding for the education needed to protect them will be withdrawn. As with the complacency that has followed successful inoculation programmes for young children now seeing a reappearance of some of these childhood diseases - complacency in educating our young about STDs/AIDS will result in further transmission, including transmission into the general community.

    To date Australia has been a world leader in HIV programmes. All leadership roles must involve occasional mistakes and inappropriate actions. However, overall Australia's actions have well and truly been taken in the right direction. We do not want to stumble now.

    It is particularly necessary to step up our education programmes in view of this particular time in the epidemic, as people are now and will be more at risk in the coming years. (Expand these comments later as I move to the haemophilia perspective.)

    Have We Got It Right For The Haemophilia Group?

    'It' can never be right for infected members of the haemophilia group. All we can offer is the best possible education and a range of care and support services to help deal with these devastating circumstances.

    People with haemophilia are a small minority group. In total our number of HIV infected people - some 260, looks small in the total HIV picture. However, our group is, in fact, the most affected - with some 30% of people treated for their haemophilia between 1980 and 1984 being infected with HIV. 55 people have now died. Haemophilia is, in itself, a painful and debilitating disorder. Being hereditary we have multiple HIV infections in families, and the identifying nature of haemophilia means that all our families, with or without an HIV infected member, are affected by HIV.

    Our families are trying to cope with haemophilia, HIV, fear, guilt, anger, deceit, stigma, and the loss of normal sexual relationships, marriage, children, grandchildren and living standards. All of this must be dealt with in isolation - the isolation brought by HIV, due to the fear of community attitudes.

    While, in Australia, Government programmes have contained the spread of HIV, they are yet to find the key to providing education that will result in the community being accurately informed enough to have the appropriate attitudes towards HIV and people with HIV that will allow HIV to be accepted as other life threatening illnesses.

    How Is The HFA Dealing With HIV?

    Let's look at the following questions:

    What Government Support has been Provided to People with Haemophilia and HIV?

    Feelings about the Government and Government support to people with haemophilia and HIV are mixed.

    For many of our group the Government was seen to move too slowly to protect the Blood Transfusion Service, resulting in their infection. A lack of communication and consultation with our group in the very early days, prior to November '84, is still resented.

    However, the immediate support provided to our group (especially by the Federal Government) since then, has enabled the HFA, and later local Haemophilia Societies, to provide many services to people with haemophilia and HIV and their families, particularly in the areas of:

    Participation by the HFA on national committees/councils was also of great value to the group, not only for keeping us and the Government in touch with each others problems and information, but also for the invaluable networking established between Government and representatives of all affected groups.

    Unfortunately, since 1990, the HFA has not been included on these committees. Medically acquired HIV has never appeared at plenary sessions at Australian AIDS Conferences, and we are often not included in other meetings on HIV issues. Even at this Summit our position is clear. Both groups - medically infected with HIV appear at the end of this long programme, with five minutes less to present than other speakers. Our concern about this is strengthened when we find basic HIV information from Government not reaching our organisation, and know that at times our communication with both Federal and State Health Ministers/Governments have been blocked or delayed at bureaucratic level. As a result we also have fears for our AIDS funding as the five year white paper term draws to a close in June next year.

    There is a growing feeling within the haemophilia group of being abandoned, of Governments waiting for the death of our HIV infected members.
     

    What is the Effect of Education Provided to Infected People and Families?

    Trying to reach people with important messages in a way that relates to them and at a time they wish to listen is extraordinarily difficult.

    The community can be compared to the swing of a pendulum, scattered from end to end - all at varying stages of reception and readiness for educative messages. The trick is to have the pendulum arrive at each person at a time that is meaningful for them.

    We believe that by using a combination of monthly newsletters, specific brochures, individual and family counselling, and workshops and camps - we have brought educative messages to the majority of our group. Information provides a feeling of control and as a result some comfort for people something small we have to offer. It is difficult to assess how this information has affected behaviour change towards protecting sexual partners.

    However, in quantitative terms it is interesting to note that as a result of the Government funding and education provided by the HFA, the transmission rate of HIV to sexual partners in the haemophilia group is less than 3%, with the majority of these people being infected before they knew of the virus. By contrast, in the USA, transmission rates to sexual partners is between 10 and 25%. So much for conservatism and delicate feelings. It is lives we must save and families we must protect from devastation.

    To raise a parallel to a point made earlier - the HFA hopes it is not to be penalised for its relative 'success' in containing sexual transmission. We fear the growing lack of Government interest in our group could be based on this fact.
     

    Why do we need to make even greater efforts with education and support now?

    To paraphrase Gough Whitlam, we must "maintain our education", both within the infected groups, and in the community.

    In 1987, the Washington International AIDS Conference confronted the haemophilia group (and others) with two graphic messages.

    1. Time is the only co-factor in progressing to HIV illness/AIDS
       
    2. It was the sexual partners of men with haemophilia who had progressed to (old) AIDS or ARC who were being infected almost exclusively.

    A clear message comes from these facts. While people with HIV are infectious for life, they are more infectious when there is more free virus in their system, that is at the point of seroconversion and when their immune function levels drop and symptomatic illnesses appear.

    Referring back to my comment about people in Australia being more at risk at this point in the epidemic - we take this message and put it together with time. The majority of people with haemophilia (and probably other infected people in Australia) were infected before 1984. They are now approaching ten years of infection. It has been established that at ten years 85% of people are symptomatic, with 50% having 'AIDS'.

    Figures presented recently in Victoria also paint a similar picture.

    80% HIV tests-in Victoria
    Year19851986198719881989
    Mean Age-at Diagnosis31.6630.3831.5732.4433.39
    R McCoy

    Discounting the first year we can see that the mean age of diagnosis increases by approximately one year each year. It appears that people were infected at much the same time but tested at different time intervals.

    The hypothesis presented here is that there was a rapid spread of the virus around 1984 in the gay community as well as the haemophilia group. Eight to ten years on, people are about to get ill, and partners are at greater risk as people are, as outlined, also becoming more infectious to their sexual partners.

    So now there is a greater risk of transmission. Now we must "maintain", and if possible, step up our education. Complacency must not step in.
     

    Where does the HFA sit on the "political" HIV agenda?

    I have already discussed the relationship between Government and the HFA, mentioning the excellent support and liaison provided for some time, but our fears now of being put aside. How do we sit with the other AIDS groups?

    People with medically acquired HIV (including people with haemophilia) are the only group not represented by the Australian Federation of AIDS Organisations, and are not, in general, affiliated with AIDS Councils. Why does this occur?

    The HFA is unhappy about the continuing use of the term "innocent victims" which is applied to people with medically acquired HIV. This term is never used by our National and State bodies in reference to our constituents. However, it is regularly used by people (or their representatives) who have been HIV infected by other transmission routes, or the media who see the words as emotive and eye-catching.

    Emotive they are, and people with medically acquired HIV object to being "put down" constantly with this term. People in this group have medically acquired HIV and consider themselves as people with medically acquired HIV and we request in the strongest terms that all AIDS groups, the media and the general public describe our situation, and us, in this way.

    The drive for financial assistance or compensation (call it what you will) by those with medically acquired HIV has highlighted the use of this term.

    This issue has been used as a political football with mischievous misinformation printed constantly alluding to moneys and services for people with HIV in general being redirected to people with medically acquired HIV, all of which is quite untrue.

    A complicated and sensitive topic, it cannot be debated here, but we suggest that the well represented members of other groups would also have sought compensation if their infection had arisen from a medical service. We also suggest that if HIV had only been transmitted medically, our members would have received financial settlements from Governments years ago.

    Empowered by Government to advocate for our respective groups in our own way, on our own terms - it is unfortunate that some choose to use this issue to drive a wedge between groups already fighting a much bigger common enemy. Part of the problem here has arisen from the breakdown in networking. Much can be resolved informally when people have an opportunity to talk regularly.

    We realise medically acquired HIV is very low in the priorities of AIDS politics. In terms of our small group this is acceptable, so long as resources and support are not withdrawn, and our people left abandoned.
     

    What are the future requirements of the HFA if it is to meet the needs of its HIV-affected members?

    These are threefold:

    1. The HFA requires maintenance funding for its administration, organisation and its basic activities. (Our Resource Development Programme will then raise the additional funds for broader member services.)
       
    2. The HFA needs Government recognition of the needs of the group through continuing representation on AIDS committees, and inclusion in AIDS forums.
       
    3. Our members need an AIDS aware community.

    May I remind you of Jonathan Mann's three epidemics.

    images_paper14/paper14.jpg

     

    The first depicts the silent epidemic of the late 70's, the second follows a similar path - the AIDS epidemic. The third is the community response to the first two. As you can see, it is erratic and out of control. Until we get this response right we will not reach people with the messages to protect them from being part of the first epidemic, and we will not have the resources to care for and support those who are part of the second.

    Our sons, fathers, husbands and brothers are becoming ill and dying. Our mothers, daughters, wives and sisters are devastated. All of this in the isolation from friends, extended family and community.

    "AIDS - Have We Got It Right?"

    In many ways we have - as right as possible, illustrated by the:

    but for our members (along with others infected by this virus, until the community accepts and deals with people with HIV as it does with people who have other life threatening illnesses - we have yet to get it truly right.

    Mr John T. Rush
    Counsel in the Victorian Supreme Court "Mr. PQ v. The Red Cross"

    Conference Paper: AIDS - Have we got it Right?
    A conference organised by The Australian Doctors Fund Ltd.
    Hosted by Professor Fred Hollows & ADF Chairman Dr. Bruce Shepherd
    Sheraton Sydney Airport Hilton
    May 14th and 15th, 1992

    As a Barrister in 1990 briefed to act in the case of "P.O." v. Australian Red Cross Society & Ors (Victorian Supreme Court) I was required to research the history of AIDS. To go back to the literature and papers of the early 1980's, to, speak with those involved, to try and divorce the emotion of acting for a person who was HIV positive and then to make an assessment of what had occurred.

    It is that assessment that forms the basis of my paper.

    If we fail to learn the lessons of history, history tends to repeat itself. Have we learned the lessons of the history of AIDS?

    The history of the onset of AIDS in our society has demonstrated that major institutions in this country have ignored the lessons of history. The Government, the medical profession, indeed the community as a whole, have lacked the strength and commitment to answer the challenge of AIDS.

    Throughout the AIDS debate the rights of one small yet powerful lobby group, have had priority over the health and welfare of the Australian community as a whole.

    Those who have criticised or even questioned the perceived wisdom have too frequently been vilified and belittled.

    From the outset for the gay activist the AIDS debate has been a matter of rights. Not our rights, not the rights of the community but of gay rights. In the context of the AIDS debate gay rights has been a persistent crusade. In the early 1980's the crusade involved the rights of gays to donate blood. To deny this right, it was said, was discriminatory.

    In February 1983 the Journal of the American Medical Association reported on a meeting convened by the Centre for Disease Control, U.S. The purpose of the meeting was to discuss the extent, apparent problem and possible ways of preventing further spread of AIDS. The meeting recognised that AIDS was primarily a disease of homosexuals. Further, the disease could be spread by blood and in particular haemophiliacs were at risk. The following discussion on rights from a report of the meeting in the journal is illuminating.

    The response of Dr. Louis Aledort of the National Haemophilia Foundation was as follows: It seems extraordinary. A debate about sexual discrimination, about the Gay "right" to donate blood in a situation where that so called right could potentially kill hundreds of innocent people who relied on blood for life. It seems extraordinary that such a debate could be countenanced. It is extraordinary that at a time when prevention of the spread of AIDS was of prize importance the debate was won by those alleging the sexual discrimination and claiming rights.

    The editorial of the Australian Medical Journal of June 1983 was written by Professor Ian Gust. It presented the Australian situation.

    The at risk population identified in that issue of the A.M.J. was Sydney's large gay community. That issue of the A.M.J. reported on cases of AIDS in Australia. The first person diagnosed with AIDS in Australia was hospitalised in Sydney in 1982. He was a homosexual from New York who averaged six new sexual contacts a month (Pemmy et al 554).

    Another paper in the A.M.J. of June 1983 reported on homosexual men with prodromal symptoms of AIDS. It concluded:

    AIDS was brought into Australia principally as a consequence of contact between Australian homosexuals and homosexual communities of West Coast U.S.A. (see "AIDS" - C.F. Farthing et al Wolfe Medical Atlases. London 1986) Contact between the groups was common. The gay press of the early 80's featured advertising for package tours.

    No doubt influenced by the Australian situation and guided by his own experience of the international problem, Dr. Gordon Archer Director of the New South Wales Red Cross Blood Bank, made an announcement in May of 1983. Because of the risk of AIDS homosexuals could no longer be accepted as blood donors. He stated that it was his belief AIDS was in the Australian blood supply and this step had to be taken in an attempt to control the spread of AIDS.

    In Australia as it had been in the U.S.A. it was recognised that AIDS was a disease of homosexuals. At the time the only cases of AIDS in Australia involved homosexuals. It was appreciated AIDS was transmitted by blood. It was understood there was an incubation period for AIDS - that a person could be infectious but have no side affects and not realise he was infectious. There was no test for AIDS. Cases had occurred in the U.S.A. as a result of blood transfusion.

    All this was known in May of 1983 but the battle of rights was waged again. The Sydney Blood Bank was picketed by gay activists. Leaflets were given to donors branding Dr. Archer as a bigot and anti-homosexual. The press and media had a field day. The right of Australians to a blood supply free of AIDS was lost in the allegations. The issue of preventing the spread of AIDS seemed to be ignored. The solution - a change in the announced policy - homosexuals could donate blood as long as they did not have "multiple partners" whatever that means. Gay rights won out over the community's right to health.

    The civil rights/discrimination debate has taken precedence for over a decade. When it was critical the rights of the patient in the h ospital receiving blood, the rights of haemophiliacs who were incredibly exposed to the risk of AIDS because of the use of Factor 8 concentrate were ignored by the gay activists. People who dared to speak on behalf of the community or in relation to public health issues were roundly condemned. Whats changed?

    And what has been the cost of this success of the gay activists? Hundreds of Australians have died or will die of AIDS as a consequence of the backdown by the Red Cross. As a consequence of HIV positive gay donors donating blood after June of 1983, hundreds of people who based their faith on the assurance that the blood supply was safe will die. There is no need here to outline the horrendous death often involved. The disease is a tragedy wherever it occurs. Yet the AIDS debate in this country is so exquisite that one is accused of discrimination even if one is to refer to a 7 year old who has AIDS as a consequence of a blood transfusion given immediately after birth as "an innocent victim".

    The fact -

    1. that Australia received the highest rate of transfusion cases of AIDS in the world; (WHO figures).
    2. that 80% of severe haemophiliacs in Australia have died or are infected with the AIDS virus;
    3. that it has been estimated that one in 450 blood donations in Sydney during the worst period in 1983 were HIV infected;
    rarely merits mention by those who run the agenda of the AIDS debate today. It was said by Mr. Don Baxter Secretary Australian Federation of AIDS organisations and Executive Director of the AIDS council of New South Wales on 14th May 1992 and I quote : I can only say that those most at risk in 1983 and 1984 were haemophiliacs who relied on blood product, Factor VIII concentrate made from the pooled blood of over 2000 donors. One HIV positive donation infected the batch. They were the people most at risk - they had no access to the press and media - their rights were not protected.

    This is the problem with rights - those passionately asserting rights have difficulty understanding or grasping the alternative view - accepting open debate.

    The lack of community leadership on the AIDS issue in the 1980's is revealing. In reading the articles and papers of the time it seems people were almost scared to put their views into the arena for fear of being character assassinated.

    The Commonwealth Department of Health in June 1983 took the position that homosexual men should not donate blood. There was no qualification. (See "Medical Practice" June 1983). Unfortunately it took the deaths of three Queensland babies as a consequence of an infected donation given by an HIV positive homosexual man, the last death occurring in October 1984, before the Federal Government acted at all to enforce the recommendation it had given in 1983. Of course by then it was all too late. The Federal Government for over a year was derelict in its duty to oversee a safe blood supply for Australians. It did more to counteract Asian flu than it did to counteract AIDS.

    What of the Red Cross? on 2 June, 1983 Professor Pennington, then Chairman of the National Blood Transfusion Committee issued a press statement. He distinguished the position in Australia from that of the United States:

    Professor Pennington went on to state that the risk of transmission of AIDS in Australia was greatly reduced because of the exclusive use of volunteer blood donors. This statement at least on its face contrasts markedly with that made in May of 1983 by Dr. Archer of the New South Wales Blood Bank and the editorial of Professor Gust in the A.M.J. of June 1983.

    I need to exercise some care in what I say concerning the Red Cross. The New South Wales government refuses to discuss reasonable compensation for those with medically acquired AIDS and thus there are over 100 claims pending on behalf of New South Wales residents with medically acquired AIDS.

    What I can do is act out some facts without expressing an opinion.

    Between June of 1983 and the latter part of 1984 the screening procedure adopted at blood banks in Australia was to produce a leaflet requesting those in high risk groups for AIDS not to donate blood. The risk groups wore defined in the leaflet as follows:

    1. "Persons with symptoms and signs suggestive of AIDS.
    2. Sexually active homosexual or bisexual men with multiple partners.
    3. Present or past abusers of intravenous drugs.
    4. Sexual partners of persons at increased risk of AIDS, i.e. persons in the above categories."
    There were no steps taken to ensure persons either read or understood the significant risks involved in persons from high risk groups donating blood.

    Contrast this Australian situation with for instance

    1. The Red Cross in Hong Kong. From May 1983 all blood donors in Hong Kong had to sign a declaration prior to donating blood that they did not fit into the high risk group f or AIDS (see evidence Dr. Leong PO V. Australian Red Cross Society).
    2. The Red Cross in U.K, Germany and Switzerland. Medical examinations were undertaken for all donors prior to donating blood. Early signs of AIDS were specifically looked for. (See evidence of Dr. Z Seidl - Professor Hassig PO v. Australian Red Cross Society).
    3. The Red Cross in Germany. In the manufacture of pooled Factor 8 concentrate, no blood was used from recognised "hot spots". i.e. Cities with large gay communities. (Author's own conversation with personnel at Behring Werke).
    4. From February 1983 U.S.A. donors at Plasmaphersis centres signed declarations that they were not in the high risk groups for AIDS (see Jama February 1983 supra).
    5. At voluntary blood banks in the U.S.A. by April of 1983 donors were being specifically questioned by trained personnel to ascertain their risk status for AIDS and were required to sign that their answers to the questions were true and correct. (See evidence Dr. M. Sayers of Puget Sound Blood Bank Seattle PO v. Australian Red Cross Society supra).

    From my work it has become abundantly clear that persons who have been responsible for providing the HIV positive blood bringing about the infection in the persons receiving such blood have been devastated. Their justifiable claim in that they were never made aware of the risks of donating blood at the time they donated.

    I am sure for some this all too brief historical analysis is merely unnecessarily raking over the past. But it does represent what I submit are the facts. It is not set out here for any other reason apart from demonstrating that many lives would have been saved if in May of 1983 common sense had prevailed. It is not set out here for any other reason apart from demonstrating there is another side to the self congratulatory slaps on the back of what seems to be a vast AIDS bureaucracy.

    Arguably we still have the same lack of common sense in 1992. The tactics of some gay activists have not changed. Thus the midnight calls of abuse to the barrister representing persons claiming for damages for medically acquired HIV. The threatening correspondence from a particular gay organisation to a television reporter because of the manner in which he reported medical issues in the AIDS debate. The personal attacks on Professor Hollows.

    The tactics of the gay activists in the AIDS bureaucracies have changed little. Anyone who has a different perspective or an alternative contribution to the perceived wisdom is "grandstanding", "posturing", "divisive". An alternative view is an "outburst" or "intemperate". Thus those with something to contribute too frequently are cowered in silence because of this type of assault.

    For the gay lobby, rights is still the major issue. It still seems on many occasions it is gay rights above all others, even sensible policy that is to the fore. It is argued that examination of policy and issues is just counterproductive. It is said by apologists for current thinking that Australia is on the right track. Australia has a recent good record in relation to the spread of AIDS. Recent materials suggest a questioning of such views. Recent materials suggest a new risk group. I quote from the Australian newspaper of March 1992. Under the title "Young Gays Risk AIDS for Sex" it was stated :

    It is not my area of expertise but I would submit that this type of finding suggests at least the questioning of the targets of the massive public advertising campaign in recent years.

    The rights debate even extends to compensation. The settlements to those with medically acquired AIDS made by the Western Australian, South Australia and Victorian governments were condemned by many AIDS organisations. Why? We go back to the 1983 arguments. Such settlements discriminate against homosexuals with AIDS. The argument is there is no distinction to be drawn between those contaminated with HIV through the use of blood products and those that received their HIV by way of consensual anal intercourse.

    I would submit that the distinction is obvious. I give the following analogy. An accident in circumstances where a driver is injured as a consequence of driving his car off the road into a light pole will normally occur in circumstances where no one is at fault. On the other hand a person injured in a car as a consequence of someone else driving through a red light can look to the other driver for compensation. The injuries occurred as a consequence of someone else's negligence. Our law entitles the other person to claim compensation for injuries occurring as a consequence of the other driver's negligence.

    Thus the haemophiliac or the blood recipient who can show HIV infection as a consequence of the negligence, the want of reasonable care, the Red Cross, the CSL, a doctor or anyone else, has a right to compensation upon proving the case. Indeed the gay man who can show his infection is due to the negligence of someone else has the same rights.

    In this context to condemn these settlements and to equate a person who has contracted the AIDS virus as a consequence of the receipt of contaminated blood with a person who has contracted AIDS as a consequence of consensual anal intercourse is fallacious.

    The condemnation of those with medically acquired AIDS who seek to enforce their legal rights by the gay activists and the AIDS bureaucracies demonstrates the prejudices and lack of objectivity, of those persons, generally taxpayer funded who run the AIDS agenda.

    Have we learned the lessons of AIDS? Until it is recognised that a person's rights in our community carry with them corresponding obligations we will not learn the lessons of AIDS. Until rights match obligations it cannot be said that with AIDS we have it right.

    Preventing the Epedemic that Australia does not have to have: AIDS and Injecting Drug Users
    Dr. Alex Wodak, Director, Alcohol and Drug Service,St. Vincent's Hospital

    Conference Paper: AIDS - Have we got it Right?
    A conference organised by The Australian Doctors Fund Ltd.
    Hosted by Professor Fred Hollows & ADF Chairman Dr. Bruce Shepherd
    Sheraton Sydney Airport Hilton
    May 14th and 15th, 1992 ABSTRACT

    Control of HIV infection among and from injecting drug users is critical for the long term control of HIV Infection in Australia. There is now consistent and strong evidence that the prevalence of HIV infection among Australian injecting drug users is still low. Recent evidence suggests that Australian injecting drug users are reducing injecting behaviour associated with HIV infection. Australia adopted policies early and implemented programmes vigorously which were designed to reduce the spread of HIV infection in this population. The most plausible explanation for Australia's low prevalence of HIV infection in Australia's policies and programmes responsible for the present low rate of HIV infection in injecting drug users is the early and vigorous implementation of HIV prevention programmes. Control of HIV infection in Australian injecting drug users represents one of the major public health triumphs in this country in the past decade and probably reduced the present cumulative number of AIDS cases by 1200, AIDS deaths by 800 and expenditure on AIDS by at least $60 million. However, recent international experience in this area is alarming. The prevalence of HIV infection in injecting drug users in Australia will probably rise in the future. Complacency, failure to implement HIV prevention in prisons including especially bleach and continued emphasis on supply reduction drug policy will ensure that this happens sooner rather than later.