Empowering Communities: The Crucial Role of Civil Society in the Caribbean’s HIV Response

The content originally appeared on: Caribbean News Service
Dr Richard Amenyah is a medical doctor from Ghana and public health specialist. He is the director for the UNAIDS multi-country office for the Caribbean.

By Dr Richard Amenyah

The Caribbean has made significant progress in addressing the HIV epidemic, but it remains the region with the second highest HIV prevalence after sub-Saharan Africa due to a myriad of factors, including limited testing and treatment coverage among some groups, discrimination, and low levels of funding, among others.

With HIV prevalence being 1.2% among the general population, and even higher rates among key populations, stakeholders in various sectors, including public and private sectors, media, academia, and, importantly, civil society organisations have significant work to do prevent new infections and put more people on treatment.

Today, in the ongoing response to HIV and AIDS in the Caribbean, the spotlight is firmly on communities of people living with and most affected by HIV as the driving force behind a transformative and inclusive response. This year marks the 35th annual World AIDS Day commemoration, observed on December 1, each year, with a central theme “Let Communities Lead” because of the pivotal role of civil society organisations (CSOs) play in spearheading initiatives that aim to bring an end to AIDS as a public health concern.

This is critical because among transgender persons HIV prevalence is 39.4% (based on data from two countries), 11.8% among gay men and other men who have sex with men (data from four countries), 3.6% among people in prisons (data from six countries), and 2.6% among sex workers (data from two countries). Communities are uniquely placed to connect with these groups and other individuals facing social ostracization and discrimination and other challenges which contribute to the high rates of prevalence among them and thereby ensuring that no one is left behind.

With over four decades of experience in the HIV response, the Global AIDS Strategy sets ambitious targets to end AIDS by 2030. Most of the progress observed in the Caribbean, even in the absence of a cure or vaccine, can be attributed to the shared roles between government and civil society. Between 2010 and 2022, the number of new HIV infections in the Caribbean reduced by 15% and widening coverage of HIV treatment saw numbers of AIDS-related deaths decrease by 53%. However, despite the achievements in reducing infections and AIDS-related deaths, the data from the 2022 Global AIDS Report show prevention trends were slightly stronger among men (18%) than women (10%) and for treatment it was slightly stronger among women (56%) than men (51%) between the 2010-2022 period. Therefore, across the region, men living with HIV are less likely than women living with HIV to be on treatment because they are not accessing testing and treatment services. Additionally, treatment coverage among people from key and vulnerable populations such as gay and other men who have sex with men, transgender persons, and sex workers as well as young people continues to be generally lower than among people living with HIV overall. Communities have also championed changes to harmful laws and policies to decriminalise buggery in several countries and protect and promote human rights across the region.

The Caribbean has a long way to go and creating an environment that encourages meaningful community participation is vital for effective public health interventions to close these gaps in prevention and treatment for the region to get closer to ending AIDS by 2030. We will fail to end AIDS as a public health threat if communities are not actively involved in scaling up HIV testing, treatment, and viral suppression to achieve undetectable levels which have already been achieved Botswana, Eswatini, Rwanda, Tanzania, and Zimbabwe. CSOs play a pivotal role in representing the felt needs of the most vulnerable and marginalized populations, constrained by stigma, discrimination, and punitive laws limiting access to justice.

Celebrating progress in the Caribbean, where the civic space is open and enabling, emphasizes the importance of respecting fundamental freedoms and human rights principles. This year’s World AIDS Day is a good time to celebrate these efforts and to also reflect on key lessons learned and further advocate for community-led responses that are people-centered, rights-based, and mutually accountable to end AIDS by 2030.

Despite progress, many countries do not finance community-led organizations adequately or human rights programming, hindering the achievement of targets outlined in the Global AIDS Strategy especially the 10-10-10 targets (which deals with law reforms and elimination of stigma and discrimination as well as gender-based violence) and 30-80-60 targets which puts communities at the center of the HIV response. Lessons learned from responding to HIV and the innovations in the global response to COVID-19 highlight the value of a community-led response in various aspects of public health. At the height of the pandemic response, communities deployed innovative strategies to ensure continuity of HIV services for at-risk and vulnerable key populations as well as people living with HIV.

On World AIDS Day, the theme “Let Communities Lead,” and its key messages should resonate with everyone, that the AIDS epidemic cannot end without the collective efforts of communities. Why are communities well placed to lead? Communities understand and identify better with the prioritized needs of populations being left behind and know how best to communicate and get their buy-in and to connect and mobilize people to engage health services. Communities have authentic voices and they put people first. Communities are trusted in reaching stigmatized individuals and providing essential services to marginalized and underserved populations. They ensure there is a human face to the services they provide and ensure that policy makers provide people centered services which respect their rights, freedoms, and dignity free from discrimination. With these qualities, communities are key players in shaping the trajectory of HIV responses. Their leadership roles should be central to all HIV strategic and operational plans and programs, emphasizing a truly multisectoral response which is inclusive in formulation, budgeting, implementation, monitoring, and evaluation.

Empowering and adequately funding communities is crucial to their roles as watchdogs, service providers, advocates, and champions of freedoms and human rights. Recognizing that ending AIDS is more cost-effective than not doing so, communities need solidarity and support to overcome policy and legal barriers. An enabling regulatory environment is essential to facilitate their role in HIV service provision and protect the human rights of all, especially marginalized communities. In the pursuit of ending AIDS, the mantra is clear: “Remove laws that harm and create laws that protect and empower” and recognize that “Not ending AIDS is more expensive than ending it.”


Dr Richard Amenyah is a medical doctor from Ghana and public health specialist. He is the director for the UNAIDS multi-country office for the Caribbean. 

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