Dr Chris Brook
Chair of the Inter-Governmental Committee on AIDS (IGCA)
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 seaboard 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.
- Infectious Disease Physicians, Virologists and Immunologists began to develop a range of treatment services as they learned the nature of the disease and applied, often innovative, therapies;
- Research into the properties of the virus, the natural history of the disease, its diagnosis and treatment gained momentum;
- Public Health Authorities moved to:
- protect the blood supply;
- develop policies to reduce disease transmission through education, prevention and infection control procedures; and
- develop patient and laboratory notification and other pivotal epidemiological data sources;
- Community Based Organisations formed to advocate on behalf of; provide care and community based support services to; and educate those at risk in their communities. AIDS Councils in virtually all States and Territories; specific organisations representing People Living with AIDS, Intravenous Drug Users and Sex Workers; and National umbrella organisations especially the Australian Federation of AIDS Organisation were formed.
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 :
- to eliminate transmission of the virus; and
- to minimise the personal and social impact of HIV infection.
There are ten guiding principles underpinning the Strategy. These are:
- Transmission of HIV is preventable through changes in individual behaviour; education and prevention programs are necessary to bring about such changes.
- 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.
- The community as a whole has the right to appropriate protection against infection.
- The law should complement and assist education and other public health measures.
- Public health objectives will be most effectively realised if the co-operation of people with HIV infection and those most at risk is maintained.
- 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.
- 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.
- 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.
- Research into the epidemic is essential to the management of the epidemic.
- 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.