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:
- First, to place this meeting in its context (and in doing so, issue a set of challenges to those who criticise Australia’s national strategy on HIV/AIDS),
- Second, to put on record, albeit in an abbreviated form, the significance of the contribution of the role of community organisations in Australia’s response to this epidemic, a role you would be largely unaware of from reading the Doctor’s Fund background paper, and
- Third, to discuss in some detail four issues which have been raised in the mainstream media: namely allegations of so-called “hijacking” of the debate, heterosexual transmission, evaluation of education programs, and new infections in the gay community
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:
- the Social Aspects of the Prevention of AIDS (1986/87)
- the SAPA follow-up in 1991 (Macquarie University)
- young gay men’s program (Queensland University 1987)
- Men who have Sex with Men (NSW AIDS bureau, at tender)
- Commonwealth “That Feeling” campaign evaluation, 1991/92 (by Alun Jackson Associates)
- Commonwealth “Male Call” phone survey (in process, Macquarie University)
- SMASH (Sydney Men and Sexual Health) (3 year prospective study, National Centre for Epidemiology and National Centre for Social Research)
- Evaluation of the testing encouragement campaigns as part of the design of the ANCA Early Treatments campaign
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.
AIDS Council of NSW
12 May 1992