`Why is Governance so Critical?` - Partnerships Across Borders Against HIV/AIDS
Date: 28 October 1997
Author: The Hon Justice Michael Kirby AC CMG Justice of the High Court of Australia
Type: Paper
Subject: HIV/AIDS
Organisation: 4th International Congress on AIDS in Asia and the Pacific
Location: Manila, The Phillipines
Notes: Presented at the Satellite Symposium
HIV/AIDS - THE CHALLENGES FOR GOVERNMENTS
The Hon Justice Michael Kirby AC CMG*
WHY ARE WE HERE?
Why are we here? Why have we gathered together to establish partnerships across borders against HIV/AIDS?
I am here because, like many of you, I have been a participant in this journey for nearly two decades. I remember the early sense of astonishment and puzzlement when AIDS first came swimming into consciousness. I remember the anger I felt as people I loved and respected became caught up in this global epidemic. I still feel that anger. I remember the frustration at the slow response. Rage at the huge expenditures on armaments and the tiny trickle of the world's capital spent on the scientific endeavour to cure or arrest HIV/AIDS. I still feel that rage. How often our hopes have been lifted with the word of new drugs to treat the condition or palliate the suffering. I still feel that hope.
I am here because of the determination which I share with you to do everything that can properly be done to prevent the further spread of the epidemic and to respond with energy, protection and support for those already infected and their carers. We are all here because of solidarity that seeks out partnerships across national and regional borders. That seeks to learn from the strategies which appear to work and to avoid the strategies that seem to be just rhetoric and to fail.
We are in Manila united in a determination to go beyond rhetoric. We are men, women and children. We are married and unmarried. We are people who are positive and people who are not. We are heterosexuals, gay men, lesbians, trans-gender people and bisexuals. We are people of every ethnicity in our region which is the region of the developing world to watch in the coming millennium. We are people with high constitutional offices, vital medical postings. And people with no jobs at all. What unites us is a determination to turn this Congress into action. We do this out of love for those who have been lost and those who are suffering. And with love for brothers and sisters who depend upon us, even if they do not even know that we are meeting here.
The Australian Aboriginal poet, Jack Davis, wrote of the need to cross boundaries and to form new partnerships:
"Let these two worlds combine,
Yours and mine.
The door between us is not locked,
Just ajar.
There is no need for the mocking
Or the mocked to stand afar
...
It is time to learn.
Let us forget the hurt,
Join hands and reach
With hearts that yearn."
He said this to his non-Aboriginal fellow citizens in Australia. I say it to you. It is time for all of us to learn. Let us join hands and reach out.
HOW ARE WE DEALING WITH THE PROBLEM?
But how do we do this? The day's theme is: How Are We Dealing with the Problem of HIV/AIDS? The answer for our region, clearly enough, is pretty poorly. The United Nations Development Programme has declared:
"The HIV/AIDS epidemic in Asia and the Pacific is growing as fast or faster than anywhere in the world. By the year 2010 Asia and the Pacific is expected to have the largest cumulative number of people with HIV infection ... In most countries of Asia and the Pacific the epidemic is still not very 'visible'. The rhetoric of ... the need for a multi-sectoral response to the epidemic is sometimes present but there is not a strong body of work to represent what this means in practice."
It all stands to reason. This is a region of the world with great concentrations of population. It is a region which, despite recent economic advances, still has an awful lot of poverty. It is a region where, more than most, there are impediments in cultural factors and still inadequate educational opportunities, disempowered women and minority groups, including some at special risk of HIV/AIDS. It is a region with its fair share of unresponsive, centralised, out of touch governments. I agree with the lesson of UNDP that good governance - with its emphasis on decentralisation, grass roots, contact with community organisations and involvement of people on the frontline - is an essential prerequisite to an effective response to the HIV/AIDS pandemic. Yet throughout our region, governments are over-taxed with problems. Their distracted, over-burdened central administrations - focussing so sharply on necessary economic advance - working political machinery all too often inherited from colonial times, creaking and straining under unprecedented pressures, fail to respond properly to HIV/AIDS. The rhetoric may be there. But effective responses are not. That is why, although only 7% of the total AIDS cases in the world are presently reported in Asia, there are very worrying epidemiological trends:
- An increasing spread of HIV infection, with more countries affected and much wider reportage of infections within particular countries.
- Changing patterns in the spread of HIV infection - from an initial impact on particular groups to a penetration of the general heterosexual community.
- Particularly rapid spread of HIV in Thailand, India, Cambodia and Myanmar/Burma.
- One million of the 2.7 million estimated new HIV infections in the world in 1996 were in South East Asia. In the same year, 30% of the new HIV cases in children occurred in that part of the Asia-Pacific region.
The reasons for these discouraging trends, which have to be spoken of quite bluntly, are not difficult to find:
- AIDS programmes generally have a low governmental priority.
- National AIDS committees are all too often inactive.
- There is limited manpower available to work on AIDS programmes.
- Budget expenditures on health programmes generally are low.
- There is a limited involvement of the non-health sector.
- There is poor or limited coordination of HIV strategies.
Of course, there are exceptions to this melancholy tale. The clearest exceptions show that progress
can be made, including in our region. The best examples of what can, I think, be done can be found in Australia and New Zealand (where sero-conversions have plateaued) and Thailand (where there has been a big fall in the HIV positive incidence amongst young men performing military service and young women: previously both high risk populations.
It behoves us all to ask what is the ingredient that these societies have brought to bear in their strategies against the spread of HIV/AIDS? Is it possible to adapt that ingredient to the widely disparate ethnic, political, religious, social and cultural divergencies that make up the kaleidoscope of Asia and the Pacific?
Australia and New Zealand may have close similarities in their societies - except when their sporting teams do battle and deep animosities temporarily come to the surface. But each of them is wholly different from Thailand. So what are the features which have marked the early responses of these three countries from which other countries in the region can learn? They are, I believe the following:
- Political appreciation of the importance of the epidemic, not only in human terms but in economic, developmental and social costs.
- Mobilisation, despite all the difficulties, of politics and government to come to grips with the realities, not the myths, of the epidemic.
- Involvement of the people most at risk in the planning of strategies to combat the spread of HIV/AIDS - commercial sex workers, intravenous drug users and homosexual/bisexual men.
- Close involvement of NGOs/CSOs in the grassroots communities, including people living with HIV and AIDS, in order to convert rhetoric into practical action.
- Active involvement of the mass media in bringing accurate messages about HIV/AIDS and recognising that it is an epidemic of waves and not linear in its shape.
- A willingness to adopt bold and controversial strategies in the belief that saving lives, ultimately, justifies initiatives which just a few years ago would have been unthinkable. The needle exchange programme in Australia. The widespread free distribution of condoms in Thailand.
- A readiness to offend the sensibilities of those who yearn for the days before AIDS and to challenge even religious and cultural modesties in an overwhelming passion to save previous, irreplaceable lives.
One cannot wave a magic wand. One cannot wish away the impediments that exist in many societies of our region to the successful strategies to contain this epidemic. At least, one cannot do so in the early stages of the epidemic when the reported cases are few, hidden away in embarrassment and when officials, facing many other challenges, hope that the problem will disappear. This, alas, is the attitude that is all too visible in many countries of our region:
- In Cambodia, when I was Special Representative of the Secretary-General of the United Nations for Human Rights, it fell to me to try to persuade health authorities to restore public signs about the dangers of unprotected sex. They had been taken down in obedience to the protests of upright, modest citizens.
- In Goa, in July 1997, the State Government commenced the eviction of sex workers from a brothel district. Fortunately, the National Human Rights Commission intervened pointing out the illegality and ineffectiveness of such a strategy.
- A Minister in Myanmar/Burma was reported as forbidding the inclusion of "pornographic" condom instructions, distributed with packs of condoms. Apparently he did not stop to think of the top priority of saving lives. Behaviouralists have found that many people do not know how to put condoms on. One survey showed that 12% even reused condoms.
- Every country has reports of difficulties with media campaigns conveying basic information about HIV/AIDS. Giving printed instructions to commercial sex workers in Mumbai, in India, may be wholly ineffective when only 12% of them can read. And when condoms, in any case, are generally not available. And, if available, cannot be enforced by a sex worker already grossly disempowered.
Giving and reinforcing information to prevent the spread of HIV is difficult enough in the wired societies of the developed world. Even there, the expenditures on prevention are typically contemptibly small. In the United States, in 1994, national expenditure on treatment for AIDS was $9.4 billion. On research, it was $1.6 billion. But on prevention it was only $0.6 billion. If this is the attitude in a sophisticated media obsessed polity such as the United States of America, can we really expect better in the struggling, often disadvantaged, problem-ridden, diverse, usually poor societies of Asia and the Pacific?
THE HUMAN RIGHTS PARADOX
In considering what is being done by governments throughout the region - and what is not being done - it is important to go back to basics. I am not just talking about the basic economic dimension of this epidemic which should mobilise political and bureaucratic action even where compassion does not. I am talking about the strategies which have to be adopted if that most difficult of objectives is to be attained: the alteration of an individual's behaviour in an activity important for their identity and pleasure where sustained behavioural change is extremely difficult to procure. How can we do it? That is the essential question which must be asked in answering honestly today's question "How are we dealing with the problem of HIV/AIDS?"
It is here that we have to face squarely the HIV paradox. Paradoxically enough, the only way in which we will deal effectively with the problem of the rapid spread of this epidemic in our region is by respecting and protecting the human rights of those already exposed to the virus and those most at risk. It is a paradox because convincing ordinary citizens that you need to protect the basic dignity of commercial sex workers, "promiscuous" people, injecting drug users, gay men and other marginalised individuals, is very hard to achieve. Yet this paradox must be consistently and forcefully brought home to everyone who has influence in the design of the programmes for dealing with HIV/AIDS. The riddle is quite easily explained. Without a cure and with no vaccine yet in sight, the only truly effective strategy for prevention is non-infection. Yet that will not occur without knowledge about the virus, awareness of its modes of transmission and a constantly reinforced effort at community protection. Protecting the groups and individuals at risk is a moral obligation, a priority strategy - owed to brothers and sisters because, like us, they are human. They feel. They suffer. They and their families are cruelly burdened when this infection takes hold, and nowhere more so than in poorer, developing countries where palliative drugs are generally unavailable, social support, outside the family, is negligible and where stigmatisation based on ignorance and prejudice is rife. Prevention is not the only strategy. Help, support and protection for the infected and their carers must be the second strand. Scientific research must be the third strand. But in terms of macro policy, prevention should be the first.
These are conclusions which have been reached by so many AIDS conferences that it seems superfluous to repeat them here in Manila. Yet sometimes simple messages are the most important ones to repeat. To say them again until they sear the intellect of those with the power to act. In the great struggle against HIV/AIDS, respecting the basic human rights of those infected, those at risk and their carers and families is the duty of all governments. It is so by the international law of human rights. It is so because it is morally demanded by ethical principles and religious teaching. But it is so, as well, because it is the most effective strategy to sustain the vital messages of behaviour modification essential to containment.
In the consultation on this topic held by UNAIDS and the Centre for Human Rights in Geneva a year ago, twelve strategies were endorsed. I will annex them to my paper. Time does not permit the elaboration of all of them. However, they present a checklist for how we are dealing with the problem. The Secretary-General of the United Nations has been invited to convey them to the Heads of Government of UN member countries. Listen to some of them and ask yourself whether your country could honestly say that it is conforming to the UN Guidelines?
- States should establish an effective national framework for the response to HIV/AIDS which ensures a coordinated, participatory, transparent and accountable approach: integrating HIV/AIDS policy and programme responsibility across all branches of government (Guideline 1).
- States should ensure, through political and financial support, that community consultation occurs in all phases of HIV/AIDS policy design, ... implementation and evaluation (Guideline 2).
- States should review and reform public health laws to ensure ... that they are consistent with international human rights obligations (Guideline 3).
- States should review and reform criminal laws and correctional systems to ensure that they are consistent with international human rights ... (Guideline 4).
- States should enact or strengthen anti-discrimination and other protective laws that protect vulnerable groups [and], people living with HIV/AIDS ... ensure privacy and confidentiality ... [and] emphasise education and conciliation ... (Guideline 5).
- States should enact legislation to ensure ... widespread availability of ... adequate HIV prevention and ... information and safe and effective medication at an affordable price (Guideline 6).
- States ... should promote a supportive and enabling environment for women, children and other vulnerable groups by addressing underlying prejudices and inequality through community dialogue ... and support to community groups (Guideline 8).
- States should promote ... creative education, training and media programmes explicitly designed to change attitudes to discrimination and stigmatisation associated with HIV/AIDS ... (Guideline 9).
- States should ensure monitoring and enforcement mechanisms to guarantee the protection of HIV related human rights (Guideline 11).
- States should cooperate through ... the United Nations system ... to share knowledge and experience [and create] effective mechanisms to protect human rights ... at the international level (Guideline 12).
These proposals were adopted by the United Nations Commission on Human Rights on 11 April 1997. They have the endorsement of skilled experts from many lands, the key United Nations agencies and the chief organs of the United Nations itself. But passing resolutions is an easy thing. Ensuring that their noble suggestions permeate down the cumbersome line of bureaucracy into the smallest village of our region, is much more difficult. Getting such brave ideas into the hearts and minds of ordinary people so that they will change their attitudes and conduct is still more difficult.
So if we ask how are we dealing with the problem of HIV/AIDS, and measure the responses of governments against the trends of the epidemic, the best practices that have been delineated and the guidelines I have just mentioned, I think you will agree that the answer is: we are not doing very well. There is a basic lack of commitment. A lack of resources. Often a lack of essential sympathy for the fundamental human dignity of this class of person. There is stigmatisation and prejudice, until HIV/AIDS comes knocking on your own door. Then, those who know realise that it is just another microscopic human virus that is the enemy of the whole human family.
But how we enliven the sense of urgency, the appreciation of the HIV paradox, the commitment of resources and the fundamental determination to tackle this virus in Asia and the Pacific whilst there is still time - that is the challenge. Some countries have done better than others. We are here to learn from them by partnerships across borders. And if we do, eventually, HIV/AIDS will be consigned to a footnote to human history. Until that happy day we, the knowledgeable ones, must be galvanised as evangelists to replace discrimination with understanding, ignorance with knowledge and indifference with commitment.
The Aboriginal Australian poet, Jack Davis, finished his poem with these words:
