Highlighting how Communities Make the Difference: A View from the Caribbean on World AIDS Day 2019

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“Communities are supported to exercise their powers to choose, know and demand that governments accelerate their efforts to achieve HIV, Health and Development goals” Winnie Byanyima, Executive Director UNAIDS.


(GOFAD) World AIDS Day provides the ideal occasion to join scientists, activists, practitioners and people living with and affected by AIDS around the world in celebrating the successes that have been achieved. In the Caribbean 55 % of PLHIV are on treatment compared with less than 5% in 2001;deaths from AIDS are one quarter of what it was in 2001 because of access to treatment; seven (7) Caribbean countries out of 11 worldwide have achieved the elimination of mother to child transmission of HIV and congenital syphilis and four others are in close range of this achievement. There is even the aspirations that AIDS, based on the 90-90-90 UNAIDS targets can be ended by 2030, if by next year, 90% of persons with HIV get tested, 90% that are tested positive are on treatment and 90% of those on treatment have viral suppression at a level that does not transmit the disease. Yet there are indications that at best only three Caribbean countries are on track to achieve these targets and the need for caution against complacency that will contribute to reversing these gains.

The Convergence of Community Led Organisations and Community Led Responses

This year, it is appropriate that World AIDS Day focuses on communities. They make a difference. Whether as Community led organisations or as Community led responses, they represent the voices of the marginalised. They champion the causes for inclusiveness and equality that are fundamentals of the 2030 Sustainable Development Goals.

Community led organisations comprise identifiable groups or networks that are determined by and respond to the needs and aspirations of their constituents. Community led responses provide strategies that seek to improve the health and human rights of constituencies. In the context of World AIDS day , “Community-led”, in principle, is an umbrella term that includes people living with HIV, key populations, women, youth, and all self-organised groups. In practice, it focuses on advocacy, campaigning and holding decision makers to account; promoting service delivery, capacity building, and funding of community-led organisations, groups, and networks. These activities may take place at the global, regional, national, subnational, and grassroots levels.

For the Caribbean, making a difference at the community level has always been driven by the regional response from the inception of the Pan Caribbean Partnership against HIV in 2001. The four (4) iterations of the Caribbean Regional Strategic Plans (CRSF): 2002-2007, 2008-2013, 2014-2018 and 2019-2025 have provided the blueprint for the partnership that comprises governments, civil society , private sector representatives, development partners and a specific set of stakeholder groups. Chief among which are parliamentarians, faith leaders, key populations and youth. The CRSFs have consistently acted as guidelines for activities on the ground which include national and community engagements and through broad based consultations among its various stake holders

PANCAP was the first Regional entity to ever receive a grant from the Global Fund for AIDS, TB and Malaria (GFATM) in 2004, while sub regional partners such as the Organisation of Eastern Caribbean States HIV Programme and the Caribbean Regional Network of People Living with HIV (CRN+) were the first of their kind to also receive support for strengthening the reach of their programmes in the areas of prevention and treatment in 2004 and 2006 respectively. As the umbrella organisation PANCAP’s modus operandum involves close engagements with the highest level regional decision making authorities: the Caribbean Heads of Government and the Council of Human and Social Development on which sits Ministers of Health, Education, Culture , Youth and Gender Affairs and which formulates policies that ensure implementation of CRSF’s priorities at country level. With the reduction in donor funding for HIV to the Caribbean based on the invidious classification of high and upper income countries, PANCAP’s advocacy has contributed in no small measure to the agreement at CARICOM Council of Ministers of Finance and Planning (July 2018) to make provision for funding the country integrated health priorities that contribute to SDG #3 including ending AIDS by 2030.

This is the context in which the vital role of CVC-C in community engagement can best be appreciated.

The Caribbean Vulnerable Communities -Coalition (CVC-C) and Community Engagement

Caribbean Vulnerable Communities initially pioneered by the late Dr Robert Carr in 2005 was a spinoff from and supported by PANCAP. It has evolved into the Caribbean Vulnerable Community Collective (CVC-C) with headquarters in Jamaica and joint operation with Centro de Orientacion e Investigacion Integral (COIN) in the Dominican Republic comprises approximately 40 grass roots civil society groups that work with marginalized populations. These populations are especially vulnerable to HIV due to socioeconomic exclusion, punitive laws and policies, high levels of violence against women and girls and stigma and discrimination across the Caribbean. CVC-C has developed a shared incident data base cataloguing human rights violations for 34 organizations in 11 countries and has provided pro bono legal assistance, community action and outreach in more than 200 cases. In addition, its media work, in some cases, in collaboration with the Caribbean Media Broadcasting Partnership against HIV has advanced the cause of human rights in more than 2000 cases. Among its most prominent roles in community education and media work are to advance human rights for key populations that in collaboration with URAP support activism, especially related to high profile cases in the courts of Belize, Guyana, Jamaica and Trinidad and Tobago.

In 2013 -2014 the joint PANCAP-CVC submission to the 9th GFATM programme placed emphasis on delivery of health care especially in the implementation of primary health, including strong community participation. Community involvement in the Caribbean over the years, has transitioned from family and community led financial, social, and psychological support to the establishment of formal community based HIV support organisations and networks. It now focuses on testing , education and health promotion at the local level and linkages to health services. Community Systems Strengthening in the PANCAP Regional Strategic Framework focuses on supporting key populations networks, facilitating national programming and outreach to and conducting specifically to these populations and conducting in key populations specific monitoring and evaluation and research.

Convergence: PANCAP-CVC

What is important to note that in the most recent GFATM grant, CVC-C and PANCAP made separate submissions and received separate grants. But notwithstanding these developments, they maintained complementarity in the thrust for PANCAP’s engagement with high level policy makers and CVC-C with its focus on community engagements. However, in the implementation of their respective mandates, it is clear that the overlap in the visions and missions is reflected in the PANCAP Justice for All Programme and Roadmap, supported by CVC-C.

There are no better illustrations of the value of this approach than in PANCAP’s consultations with parliamentarians, faith leaders, key populations and civil society with the support of CVC-C. The presentation of CVC-C to the PANCAP Parliamentary Forum in Jamaica In February, 2019 strongly advocated against the criminalization of willful transmission of HIV. CVC-C interventions in other PANCAP fora have helped to shape the policies for inclusion of access of migrant communities to medicines and services, of funding more specifically programmes to reduce the spread of AIDS among prisoners through prevention measures and highlighting the evidence of violence against the LGBTI populations and the need for equitable policies for sex workers.

What has emerged in the next steps of the PANCAP_CVC-C nexus is a project: Removing Barriers to accessing HIV and Sexual and Reproductive Health Services for Key Populations in the Caribbean (The Global Fund Project) The barriers to be addressed by the Grant Program include:

1. The legal and policy environment that is at odds with a public health response.
2. Harmful societal norms and high levels of stigma and discrimination.
3. Limited capacity of national programs to integrate and implement rights-based approaches.
4. Limited capacity of national programs to provide innovative, evidence-based, high impact services that reach key populations, especially in the area of prevention.
5. Weaknesses in health systems, particularly in the areas of strategic information and l aboratory services.
6. Insufficient attention to sustainability planning and financing.

Building on the uniqueness of the Caribbean Partnership

These are mainly sketches of a vibrant Pan Caribbean Partnership in which CVC_C plays a critical, even defining role in community-led responses, protecting the civic space for the vulnerable and marginalised and promoting the growing importance of innovation in HIV response designed to end the AIDS epidemic. CVC-C’s collaboration with and supporting for PANCAP’s Knowledge for Health Programme, has enhanced the capacity of the partnership to produce baseline evaluations, treatment and adherence goals policies to prevent or reduce secondary transmission through the ground programmes that explore the unique history and reality of the marginalised and vulnerable groups.

This uniqueness has the potential of making community engagement and empowerment in the Caribbean a win-win scenario. In so many ways the Caribbean experience is fully responsive to the clarion call by the new Executive Director, Winnie Byanyima in launching her first UNAIDS Report, Power to the People “UNAIDS to take big steps in a new direction.. the first step is to address inequality and injustices that fuel the HIV epidemic . … it cannot be right that some people get treatment and live long lives while others cannot access health care and die…. We need to provide more services — education, health, social protection. That is how we will end AIDS “

Eddie Greene

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