The Caribbean's Disease Monitoring and Prevention Agency 5
Background to CAREC’s Advocacy For Health 7
Public Health Burden of HIV/AIDS in the Caribbean 8
The Economic Impact of the HIV/AIDS Epidemic 11
Advocacy For AIDS 12
Advocacy Objectives 13
Beneficiary Countries 15
Carl James Hospedales, MB, BS, MSc, MFPHM,
Bilali Camara, MD, MPH,
Director CHAP, Head SPSTD, CAREC/PAHO/WHO
Karl Theodore, PhD,
Senior Lecturer and Head Health Economics Unit, UWI
Shelton Nicholls, PhD,
Lecturer, Health Economics Unit, UWI
Health Economist, Assistant Lecturer, Health Economics Unit, UWI
Ms Yolanda Simon,
Executive Director, CRN+, Trinidad and Tobago
Michel de Groulard, MD,
French Technical Cooperation, CAREC/PAHO/WHO
Hans-Ulrich Wagner, MD, MTropMed,
German Technical Cooperation, CAREC/PAHO/WHO
Jones P. Madeira,
Information Adviser, SPSTD - CAREC
Dr Robert Lee,
Registrar, Trinidad and Tobago Public Health Laboratory (TPHL)
Dr Glenda Maynard,
Chief Medical Officer, MOH- Trinidad and Tobago
Ms Wendy Kitson-Piggott,
HIV/AIDS/STD Laboratory Advisor, SPSTD, CAREC
Dr Lawrence Elliott,
CDC, Atlanta USA
Dr Amy Lansky,
CDC, Atlanta, USA
Dr Peter Figueroa,
Chief Medical Officer, MOH-Jamaica
Dr Tejtrap Tiwari,
Director Communicable Diseases, MOH-Guyana
Dr Navindra Persaud,
National AIDS Programme Manager, MOH-Guyana
Ms Yvette Holder,
Biostatistician, PAHO/CAREC, Trinidad and Tobago
M. Jan van Eyndhoven,
Resident Representative, UNDP
Dr Habib Latiri,
PAHO/WHO Representative, Suriname
Ms Veta Brown,
PAHO/WHO Representative, Guyana
Mr Paul Ellis,
PAHO/WHO Representative, Trinidad and Tobago
Special thanks to political leaders, decision makers and national health authorities and NGO/CBO leaders in Antigua and Barbuda, Dominica, Grenada, Guyana, St. Kitts and Nevis, Suriname and Trinidad and Tobago.
In 1995, at a joint HIV/AIDS strategic planning meeting between the Caribbean Epidemiology Centre (CAREC), its member countries, the US Centers for Diseases Control and Prevention (CDC) and the World Health Organization (WHO), Advocacy for HIV/AIDS was identified as a major strategy to better control the epidemic. CAREC was recognised as having a central role in efforts to sensitise political leaders, and decision and policy makers about HIV/AIDS and its impacts.
Subsequently, CAREC’s Special Programme on Sexually Transmitted Diseases (SPSTD) developed the concept, the methodology and related technical instruments for use during advocacy workshops. The advocacy teams are multi-disciplinary comprising epidemiologists, public health specialists, health economists and representatives of people living with HIV/AIDS. The audience composition varies but may, in a specific country, include the President, Prime Minister, Cabinet Ministers, Opposition Leaders, Parliamentarians, Community Leaders and other National Decision Makers.
An important step in each workshop is the sharing of results of the evaluation of the HIV/AIDS surveillance systems carried out in the respective country by CAREC in partnership with country nationals. Evaluation results are summarised around the concepts of sensitivity, quality and scope of data collected, representativeness, timeliness, confidentiality, usefulness, simplicity, flexibility, feedback, acceptability, and specific shortcomings and are used to demonstrate the public health value of the national HIV/AIDS surveillance systems. Weaknesses identified in the surveillance systems are explained and plans of action for improvement of the systems are developed and submitted to the Ministry of Health concerned.
The economic impact of the epidemic is projected based on the epidemiological data and cost estimates developed to show the devastating magnitude of the HIV/AIDS epidemic in the particular country in terms of its potential human, economic and social consequences. The comparative advantage of primary prevention of HIV infection versus care and support for people living with HIV/AIDS, measured in terms of cost-effectiveness, is also demonstrated.
The short-term outcomes of the advocacy efforts vary from country to country. However, a common feature of the process, to date, has been an active demonstration of commitment to the prevention and control of HIV/AIDS. Indicators of such commitment have included formulation and introduction of new policies for financing the National AIDS Programme from local funds, stimulating the creation of a positive environment to better control the epidemic, and broadening the national response to the epidemic. In this regard, countries have proposed the development of National AIDS Policies which address the following issues: human rights, sex education in schools, deregulation of condom sales, decentralisation of STD services and the use of primary health care models to make information, education, care, counselling and support services available to the wider population, and the inclusion of non-governmental and community based organisations in the national effort.
he Caribbean’s Disease Monitoring
and Prevention Agency
The Caribbean Epidemiology Centre (CAREC) is a unique institution administered on behalf of 21 member countries by the Pan American Health Organization (PAHO), the World Health Organization’s (WHO) Regional Office for the Americas. Under a multilateral agreement, CAREC provides laboratory reference, public health and epidemiology services to its 21 member countries (CMCs). CAREC enjoys also an international reputation for its work in support of public health in the Caribbean.
CAREC’s mission is to improve the health status of Caribbean people by advancing the capability of member countries in epidemiology, laboratory technology and related public health disciplines, through technical co-operation, service, training, research and a well trained and motivated Staff.
There are three major divisions within CAREC: Epidemiology, Laboratory and Administration and two Special Programmes: the Special Programme on Sexually Transmitted Diseases (SPSTD) and the Expanded Immunization Programme (EPI). There are two other units … Public Health Intelligence and Research and Development (PHI) and Human Resource.
Background of CAREC’s Advocacy for Health
The ninth edition of the Concise Oxford Dictionary defines the word advocacy as a verbal support or argument for a cause, policy, etc. In public health terms this is translated in the use of epidemiological, behavioural and public health data (social and economic implications) to inform and sensitise leaders, decision makers, and public health planners to specific public health issues or conditions, as well as to their social and economic impact so as to have those particular issues prioritised on the national agenda (supported financially and discussed in political fora). Many public health agencies around the world, including CAREC, have a long history in the use of advocacy as a deliberate public health strategy and tool to bring about policy change and to improve health conditions among populations.
During its many years of its existence, CAREC, in applying advocacy to assist in fulfillment of its mission to improve the health status of Caribbean people, can point to notable examples of its initiatives and achievements in this regard.
Highlights of CAREC's Advocacy for Health from 1988 - 1998
1988 - 1991
Advocacy with Health Ministers for a measles elimination campaign in the Caribbean. This has led to the first ever campaign of its kind in the world for elimination of indigenous measles transmission. This objective has already been achieved.
Seatbelt legislation in Trinidad & Tobago. Implementation of this legislation has had an impact by the decreasing number of deaths due to traffic accidents in that country.
1996 - 1997
A major project funded by the European Union for the strengthening of medical laboratory services in the Caribbean secured through advocacy of Ministers responsible for Health, Trade, Finance, and Economics in CARIFORUM countries. This has led to the Contribution Agreement for a Regional Quality Assurance Programme to include Dutch, English and Latin Caribbean.
1997 - 1998
Advocacy for safer, more hygienic conditions in the tourism industry, including hotels, among regional bodies like the Caribbean Hotels Association (CHA) and Caribbean Tourism Association (CTA). This has led to a Caribbean Health Tourism and Resource Conservation Project, funded by the Inter American Development Bank (IADB) and Caribbean Development Bank (CDB), and designed to be self financing by project end.
The Public Health Burden of HIV/AIDS in the Caribbean
HIV Sub-Typing and Prevalence
The prevalent subtype of HIV1 in the Caribbean is the sub-type B. HIV prevalence is high among sub-populations at high risk of contracting HIV, and relatively low among sub-population representing the general population. With the exception of Guyana and Turks and Caicos which have a generalised HIV epidemic (HIV prevalence in the general population is higher than 5%), the CAREC Member Countries belong to the countries with concentrated HIV epidemic (HIV Prevalence in the general population is lower than 5%, but higher than 5% in the population at high risk).
Burden of AIDS
Between 1982, when the first AIDS case was described in Jamaica, and the end of 1997, 12, 000 cumulative AIDS cases were reported to CAREC by 19 of its 21 Member Countries. This represented 172 AIDS cases per 100,000 population. This cumulative rate makes the Caribbean the most affected subregion in the Americas.
Since 1993, CAREC member countries have reported more than 1,000 AIDS cases on a yearly basis. From the beginning of the epidemic to the end of 1996, 58% of the CAREC member countries have registered a cumulative rate above the 100 AIDS cases per 100,000 population. Despite the under-reporting of AIDS cases documented in some of the CAREC member countries from 1994 to 1996, the Caribbean region leads in the highest AIDS incidence rate in the Western Hemisphere.
The age distribution shows that 83% of the cumulative AIDS cases are diagnosed in the age group 15-54 years old, with 50% of these between 25-34 years. Taking into account the incubation period from HIV infection to development of AIDS disease, this situation corresponds in many instances to an early HIV infection, with 50% of these occurring among adolescents and young adults between 15-24 years.
The predominant mode of transmission of HIV in the Caribbean is sexual -- 75% of the cumulated reported AIDS cases (63% heterosexual and 12% due to male-to-male contact). However, available data most likely underestimate the burden of the disease on the male-to-male category because of the strong social, cultural and legal discrimination against men who have sex with men (MSM). Despite the disparity among countries, the sex ratio male to female is falling and the “feminisation” of the HIV epidemic a reality.
The feminisation of the HIV epidemic is contributing to the increase of perinatal transmission (“verticalisation” of the epidemic) of HIV. The perinatal transmission of HIV represent 6 to 8% of all AIDS cases, much higher than North America and Western Europe. This high mother-to-child transmission of HIV is having a negative impact on the health status of Caribbean children.
The transmission of HIV through blood and blood products is low, and represents only 0.5% of the AIDS cases. This indicates clearly that HIV transmission through that route is under control. However a sustained effort is needed to eliminate potential donors at high risk of HIV infection by the continuous use of pre-selection questionnaires, by ensuring continuous HIV screening in donated blood, and by the strict adherence to the universal precautions by medical professionals.
The transmission of HIV through intravenous drug use (IVDU) is low in the region, representing only 2% of the cumulative reported AIDS cases. This is confined primarily to one CAREC member country (Bermuda) where 43% of its cumulative reported AIDS cases at the end of 1996 were due to intravenous drug use.
Mortality Due to AIDS
From the early stage to the mid-1990s, it became apparent the HIV/AIDS epidemic in the Caribbean was exacting a huge human burden, which if not curbed, threatened the development of the region. The overall reported AIDS mortality is very high (63% of the cumulative AIDS cases), and varied from 56 to 66% over the period 1987-1996. Following decades of decline, mortality from communicable diseases began to rise after 1990 largely due to impact of opportunistic infections related to AIDS.
From CAREC’s specific mortality data (see graphs on age specific mortality) there is a clear indication that AIDS has become the leading cause of death in males and females aged 25-44 years. This is generating an increasing number of AIDS orphans in the region.
The Economic Impact of the HIV/AIDS Epidemic
Projection models developed in 1993 by CAREC and the Department of Economics of the University of the West Indies showed that AIDS had the potential to consume 3-5% of the GDP of the Caribbean by 2010 if a scenario of high HIV prevalence rates (5% of adult population) was applied.
The comparison between the AIDS incidence per year and the projected cases of AIDS in the low and high scenarios of this modelling, shows that already at the end of 1993, reported AIDS cases were more than 1000 and that at the end of 1996, this number was close to 2000 AIDS cases. This puts the Caribbean closer to the high scenario of the projections corresponding to the loss of 5% of regional GDP due to the AIDS epidemic.
Advocacy for HIV/AIDS
In 1995, as part of a revision of the regional strategic plan for an expanded response to the HIV/AIDS epidemic in the Caribbean, the strategy of advocacy for AIDS was explicitly adopted. This regional strategic plan was developed in consultation with member countries, donor agencies, CDC, WHO/PAHO and representatives of non-governmental organizations and community-based organizations.
This paper describes the approach taken to the advocacy effort and the outcomes in seven (7) CAREC member countries to date (time period of intervention: 1997-1998), and discusses the elements needed for success.
The main objectives of the advocacy effort were”
To sensitise governments, cabinets, parliaments, senior policy makers, and other influentials to the social and economic impact of an unchecked HIV/AIDS epidemic
To bring about changes in policy and resource allocation in the fight against HIV/AIDS which should lead to more effective prevention and control of the HIV/AIDS epidemic
To catalyse true multi-sectoral approaches and promote greater inclusion of all important sectors of the nation to better prevent and control the HIV/AIDS epidemic.
Multi-disciplinary CAREC/PAHO-UWI teams in country supported by external consultants on some occasions –e.g., from CDC, CRN+, and staff from ministries of health in the Caribbean carry out the sessions. One effort in Trinidad and Tobago included a range of United Nations agencies. Team sizes ranged from 4-6.
Use of information from regional and global surveillance systems on trends and impacts of AIDS, as well as examples of successes with prevention efforts in other developing countries.
Use of economic impact analyses to bring home the cost of the AIDS Epidemic to society and in the health services.
Assembly of existing evidence on magnitude, trends and impacts of HIV/AIDS in country.
Collection of up-to-date information on status of the epidemic in each country, typically through an evaluation of the epidemiological surveillance system, the findings of which are then used in the advocacy effort.
Presentations to and discussions with Prime Ministers and their Cabinets, Parliaments, and other decision makers in the private sector and community leaders, lasting between 2 and 8 hours.
Countries Targeted to Date and Interventions
Examples of advocacy interventions in countries
Workshop with the President and his Cabinet co-ordinated by Minister of Health and the PAHO/WHO Representative
Trinidad & Tobago
Workshop with the Prime Minister and Parliamentary Caucus including government and opposition representatives
St. Kitts & Nevis
Workshop with the Prime Minister and his Cabinet, Leader of the Opposition, leaders of the business community and NGOs
Workshop with the Prime Minister and his Cabinet, Parliamentarians, representatives of media and NGOs including youths leaders
Workshop with the Prime Minister and Cabinet and community leaders
Workshop with the Members of Parliament and senior ministerial officials, and executives of the Caribbean Employers’ Confederation.
Workshop with Senior staff in the public and private sectors
In all countries, sensitisation of the Government and decision makers was achieved as judged from the high level of interest and discussion generated during the workshops and meetings.
Results Directly Related to Prevention and Control of HIV/AIDS
Allocation included in the national budget to support HIV/AIDS prevention and control. National policy on HIV/AIDS, including multi-sectoral approach and respect for human rights, developed and being adopted.
Trinidad & Tobago
Deregulation of condom sales; introduction of HIV/AIDS/STD education in the school curriculum; new proposed legislation to prevent discrimination against and preserve human rights of persons living with HIV/AIDS. Multi-ministerial task force implemented.
St. Kitts & Nevis
Funding for HIV/AIDS programme in a newly created budget line, the National Strategic Planning for expanded response to the HIV/ AIDS epidemic has started. Human resource capacity building is planned for improved implementation and evaluation of activities included in the national plans.
St. Kitts & Nevis
Government commitment to allocate more resources for HIV/AIDS Prevention and control. District AIDS committees are strengthened and decentralised activities for expanded response to HIV/AIDS are taking place. Cabinet and the opposition have approved national AIDS policy.
Government commitment to put HIV/AIDS prevention and control on the national agenda, and initiation of human resource development programmes with Jamaica in the framework of Horizontal Co-operation between the two countries.
Parliamentary health desk committed to continue sensitisation efforts with other arms of government and to support the work of the National AIDS Programme. The local Employers' Confederation agree to explore implementation of national programs with employers, unions, Ministry of Labour and the International Labour Organization (ILO).
Antigua and Barbuda
Senior staff in nine (9) ministeries have committed to put HIV/ AIDS high on the national agenda. They recommended to the government to allocate at least 1% of the GDP to the fight against HIV/AIDS and encouraged CAREC to conduct similar workshops for Cabinet Ministers and Private-Sector Decision Makers. They appealed to the society to care for people living with AIDS.
Some Indirect Results of the Advocacy Effort
Increased appreciation by wide range of Ministers and non-health personnel of the value of health in sustainable human and economic development.
Enhanced collaboration between different governmental and non-governmental sectors, as well as between regional institutions and the ministries of health on one hand, and between regional institutions, CAREC and UWI, on the other.
Increased skill of ministry of health personnel in the collection and use of information for advocacy on an important public health matter.
While some operational research is required to assess the long term impact of the advocacy effort on national policies, the related combination of meetings and workshops organised by CAREC in collaboration with the UWI and the Caribbean Regional Network of People Living with HIV/AIDS (CRN+) so far in its member countries has proven to be an effective HIV/AIDS sensitisation tool among the political leadership and decision makers.
The exercises were conducted to embrace various levels of leadership in the countries - including government and political opposition, private enterprise and other non-government organisations - and, accordingly, generated initial responses that ranged from national budgetary allocations for HIV/AIDS programmes to initiatives at widening the community involvement and other public sector institutions in activities to reduce the prevalence of the disease.
The preliminary reaction demonstrated the value in setting explicit objectives for the advocacy efforts, as well as in applying a multi-disciplinary approach, especially involving health economics and people living with HIV/AIDS buttressed by up-to-date country specific information, to re-inforce the human and economic impact of HIV/AIDS and the importance of health in sustainable development.
H.W. Fowler, F.G. Fowler, Della Thompson. The Concise Oxford Dictionary of English, Ninth Edition, Clarendon Press, Oxford 1995.
CAREC: Reports on Evaluation of HIV/AIDS Surveillance Systems in Guyana, St. Kitts and Nevis, Dominica, Grenada, Bahamas, Bermuda, Belize, Suriname and Trinidad and Tobago, 1996-1997.
CAREC: Mathematical Modelling of the HIV/AIDS Epidemic in the Caribbean. November 1993.
CAREC: Quarterly Reports on AIDS, December 1996
CAREC: Annual Report - 1996
CAREC: Annual Report - 1997
CAREC: Specific Mortality Data Analysis, 1997
CAREC: Quarterly Reports, 1998