“Leadership Confronting HIV/AIDS Stigma and Discrimination in The Caribbean”
The year is 1982. The first case of HIV/AIDS was diagnosed in the Region.
As we meet today, two decades later:
- There are more than 500, 000 infected persons
- 40,000 are dead as a result
- Over US$50M in direct and indirect costs have been lost to the economies of the region (according to the Health Economics Unit)
- Approximately 20,000 are expected to be orphaned by 2020
- Persons Living With HIV/AIDS (PLWHA) represent a significant part of the labour force between the ages 15-44 – among the most productive years.
One issue linked to stigma and discrimination has to do with the matter of a cure. Years ago, before the development of effective treatment and cure for tuberculosis, persons afflicted with this illness were shunned by society. That changed significantly when a cure was found. In our discussions of HIV/AIDS-related stigma and discrimination, we should never lose sight of matter of a cure.
All the indications are that we are locked in a deadly stranglehold by an epidemic that is likely to annihilate a sizable proportion of our workforce if something radical does not happen to reverse the trends.
These trends raise alarm bells for us in the Caribbean. We are entering times of “clear and present danger”. And this is particularly threatening and disturbing especially now that we in this Region are optimistically poised to implement the CARICOM Single Market and Single Economy (CSME), with the Single Market coming into being by 2005. In fact, 2005 has been designated the year of the single market. This landmark, includes the inauguration of the Caribbean Court of Justice (CCJ) and would usher in the free movement of services and people, to join the long established free movement of goods, and contribute to the increased competitiveness of this region within the increasingly liberalised world economy. At the last special meeting of Heads of Government earlier this month, it was clear that all partners – our Heads of Government, leaders of the business community, labour and civil society – have that sense of urgency and resolve to make the CSME a reality. But such a reality can only blossom and be successful if the health and welfare of our people are guaranteed. HIV/AIDS is a destructive force that can undermine the whole edifice of the CSME. The epidemic of stigma and discrimination fuels human and economic disaster if not checked as a matter of urgency.
What role can advocacy and leadership play in this struggle to reduce stigma and discrimination?
Before we answer that question, we need to be clearer on who are really the leaders to which we look to for guidance?
The composition of this Conference virtually provides the answer by explicitly defining “leaders as Champions for change”; by signaling that “champions for change” are drawn from a wide cross section or spectrum of society and in particular, from among the politicians and parliamentarians, the religious organizations, the business, community, youth and cultural icons in the world of show business, our calyposians, singers, writers, and sportspersons. Also “champions” are drawn from among our educators, health workers, community leaders and the media. But a most important component of this leadership comes from the representatives of PLWHAs. They are at the heart of what defines both the problem and the solution to this epidemic of stigma and discrimination.
What are the characteristics of leadership in times of clear and present danger? Let me say something about four categories of leadership, all of them requiring courage:
- Informed Leadership
- Sensitive Leadership
- Bold and Decisive Leadership
- Visionary leadership
These categories are not mutually exclusive but they help to establish some benchmarks by which to judge the impact of their varying attributes. Leadership, however, is not necessarily limited to individuals. Leadership – Champions for Change – vested in institutions, partnership or a team is in this sense much more sustainable. In the fight against HIV/AIDS we are in for a long struggle.
Informed Leadership
Many advances have been made in the last 20 or so years since the HIV/AIDS virus was discovered in the region. There have been advances in testing for the virus, anti-retroviral therapy, CD testing, treatment to reduce mother to child transmission and even ARVs that can be used as prophylactics. But how many of us take the time to keep abreast of these developments.
How many are aware of what is current in other fields that impact on our area of work? An informed leader does. He or she first establishes the mechanisms to access information, to be advised by expert opinion and to be up-to-date on the options for decision-making. Informed leadership knows the value of accurate information for decision-making; and knows that information loses currency the older it gets. Therefore receiving information in a timely manner is of the essence.
An informed leader recognizes that this Conference is part of a process in this region that was launched in 2000 in Barbados, and that a critical component in defining the accelerated response is contained in the Caribbean Regional Strategic Plan, which was developed after wide scale consultation within the Pan Caribbean Partnership against HIV/AIDS. This plan provides a platform for action and is an instrument for the guidance of collective regional leadership in its fight against HIV/AIDS.
I would therefore like to see as one of the outcomes of this meeting a resolve to identify and charge one or more regional institutions to give leadership to the collection and dissemination of timely epidemiological and socio-economic information in a reader-friendly manner. This would ensure that advocates, policymakers and the ordinary citizens will be more informed of the evidence of fighting the disease.
From my position as Secretary General of the Caribbean Community, two of the institutions that appear to have the expertise to deliver on this activity (while not being the only ones) are CAREC and UWI: both core partners of the Pan Caribbean Partnership Against HIV/AIDS.
would therefore like to see as one of the outcomes of this meeting an attempt to define the ethical framework by which we establish guidelines for reducing stigma and discrimination at the workplace, in the schools, in the churches and in our theatres and media. I would also like us to agree to promote the reduction of stigma and discrimination as a complement to parliamentary action, which lead to actual human rights legislation to protect the rights of PLWHA and of others that are vulnerable. This twining of ethical and legal approaches to the challenge we face seems eminently worthy of champions of change.
Bold and Decisive Leadership
Too often fear of change, of moving away from and out of our comfort zones to the innovative and different, is covered under the statement “If it ain’t broke, don’t fix it”. I believe we have enough evidence to know that in with regard to the issue we are considering, it is broke and it is time to take bold steps to fix it. We have many policies, programmes, interventions that, on the books look good, suggest an egalitarian society but fail to effectively address the problems with which we are faced.
Among the examples that were pointed out in the last session is legislation, in particular, legislation currently governing stigma and discrimination. Not only are acts of stigma and discrimination difficult to pin down, but also in many instances redress is well neigh impossible, as laws governing such acts are not enforced. If we are to combat HIV/AIDS, reduce stigma and discrimination and improve the well being of PLWHAs, then we have to be bold and decisive, particularly in our efforts to address issues of discrimination in access to treatment, care and support.
In the working brief for this meeting there are two examples of what I consider bold and decisive leadership. I draw your attention to the case of Brazil.
Brazil
A major problem that Brazil, like many of our countries faced, was accessing anti-retroviral drugs in sufficient quantity and of effective quality to address the public health threat. Prices of patented drugs were exorbitant. A decision had to be taken. Brazil, under the leadership of the Ministry of Health, decided to circumvent the purchase of costly ARV from a few large pharmaceutical companies and test the flexibilities of the TRIPS agreement that allowed the production of generic drugs for its population. This was a bold step, not without challenges. The results?
- In five years (1995 – 2000) the country experienced a 70% reduction in AIDS related deaths;
- 60% – 80% reduction in AIDS related opportunistic infections;
- 4 fold reduction in hospitalization rates;
- Savings of more than US$670 m from 1997 – 2000;
- Local production of Anti-retroviral drugs saved the Govt. US$490m (1996 – 2000) in procurement cost alone
Desperate situations often give rise to brilliant solutions. Brazil was willing to ‘challenge the establishment even in their own backyard’. Now access to ARVs, care and treatment is available free of cost, it is reported, to every single member of the population.
I would like to see as an outcome of this Conference that we learn from the lessons of successful ventures that no single approach will work. And that it is possible for stakeholders in this enterprise, including religious organizations to pursue their approaches on parallel tracts rather than as opponents. More important is finding the formula for a multi-sectoral approach to the problems of HIV/AIDS stigma and discrimination.
Visionary Leadership
Visionary leadership combines informed, sensitive and bold leadership. It is a prerequisite for dealing with the challenges before this Conference.
HIV/AIDS is a complex, development issue and development is not confined to any one sector, organization, agency or individual. We say it often but do we really believe it? Are we convinced that no one Ministry, organization, or agency can successfully combat HIV/AIDS, stigma and discrimination? Do we truly believe in the multi-dimensional approach or are we so caught up in defending our programmes and positions that we fail to be honest with ourselves and more importantly, to those who really matter – People living with or affected by HIV/AIDS?
Brazil and other countries have been successful because of the multi-programme, multi-sectoral approach taken in the fight against HIV/AIDS – government working with the private sector, the media, religious and other civil society groups. We are dealing with real people, humanity, and a condition that is primarily spread by the most intimate of acts. People will deal with this differently and we must be prepared, in keeping with our respective callings and mandates, to offer assistance and more important, to offer leadership as individuals and as organisations. We must not be consumed with fighting over turf, status, ideologies and philosophies, because while we are so consumed, people are dying; children are suffering; our economies are collapsing.
It is my view that visionary leadership in CARICOM has conceptualized and developed a network that is now recognized as an international best practice. I refer to PANCAP – which is a network of all regional groupings (governments, civil society, business, religious organizations etc.) represented at this meeting as “Champions for Change – and which the CARICOM Secretariat has the honour to coordinate.
I would like as one of the outcomes of this Conference that we endorse the role of PANCAP as a conduit for ensuring the continuing move towards an integrated, intersectoral model, a focal point for synthesizing the messages emanating from this Conference, a forum for catalysing leadership and political will, a mechanism for bonding regional and national pursuits.
I would also like to see emerging out of this meeting, concrete priorities for implementation with timelines. Our declaration must be worthy of visionary leadership to which we all as “Champions of Change” must commit. Our partners, PLWHA , deserve this level of commitment. The future of our region demands it.
Let us as Champions for Change resolve that we accelerate this fight against HIV/AIDS by moving beyond advocacy to action.
Through the Caribbean Community Secretariat and the Pan Caribbean Partnership Against HIV/AIDS, I pledge to be a Champion for Change.
