Richard Amenyah and Jaevion Nelson | Stigma stalling progress to end AIDS in the Caribbean

Today (March 1), the Caribbean joins the world in observing Zero Discrimination Day to honour the right of every person to enjoy their rights and live with dignity. In the region, we have made incredible strides in providing life-saving medicine.

Yet a persistent dark shadow looms over our progress. While we have the tools to treat HIV, we have yet to cure the prejudice that surrounds it. HIV-related stigma is not just a social issue. It is a public-health crisis, a life-threatening barrier preventing people from accessing the health services they need.

New data from across our islands tells a sobering story. In Trinidad and Tobago, the 2024 People Living with HIV (PLHIV) Stigma Index 2.0 found that nearly 60 per cent of PLHIV reported internalised stigma in the past year. Over two-thirds feel dirty because of their HIV status. More than half feel worthless or ashamed. In Jamaica, the 2020 Stigma Index revealed equally troubling findings. One-third of PLHIV experienced stigma or discrimination in the past year. More than half reported internalised stigma, with 81 per cent hiding their HIV status from others and 74 per cent finding it difficult to tell anyone about their status. In Guyana, stigma was the most reported barrier to care at 60 per cent. These data reflect the lived realities of the people we live, work, worship, socialise, and make families with.

The fear of judgement is paralysing. In Trinidad and Tobago, 36 per cent of people delayed HIV testing because they feared how others would react. In Jamaica, 38 per cent delayed testing for the same reason, and 30 per cent delayed starting treatment because they were worried people might learn about their status. One in five people in Trinidad and Tobago experienced non-consensual disclosure of their status, often by family members or community members who shared their private health information without permission. Nearly half reported gossip about their status. More than one-third experienced exclusion from social or religious events. When people are too ashamed to seek care, the virus wins.

SOURCES OF FEAR

Healthcare settings are often sources of fear. In Trinidad and Tobago, more than one in four PLHIV reported experiencing stigma in healthcare settings. In Jamaica, 10 per cent experienced stigma when seeking HIV care, rising to 15 per cent when seeking non-HIV care. One-third of people in Trinidad and Tobago avoided or delayed care because they anticipated stigma. In Jamaica, 21 per cent were afraid healthcare workers would mistreat them or disclose their status without permission. In Guyana, 35 per cent of those who disengaged from care cited stigma within healthcare settings as the reason. When people fear their medical records are not secure or that they will be treated differently, they stay away. We cannot end AIDS if people are too afraid to walk through the clinic door.

Workplaces are no better. In Trinidad and Tobago, only nine per cent of PLHIV felt comfortable disclosing their status at work. Four in ten overheard negative comments about HIV in their workplace. In Jamaica, 11 per cent were refused employment or lost a source of income because of their HIV status. Fear of job loss, denial of promotions, and changed job descriptions keep people silent. When workers hide their status, they may miss doses of medication or avoid follow-up care. In Jamaica, 27 per cent missed a dose of treatment because they feared others would find out. This hurts both individual health and workplace productivity.

The Caribbean cannot afford to let stigma drive the epidemic. Harmful laws and policies entrench the stigma and discrimination people encounter daily. They do not protect the public. They push vulnerable and marginalised people into the shadows and away from essential health and other services they desperately need.

Addressing discrimination in practice requires deliberate action to prevent, reduce, and ultimately remove the structural conditions and entrenched attitudes that give rise to or sustain substantive or de facto discrimination. Hence, to end AIDS as a public-health threat by 2030, Caribbean governments must act now.

REPEAL

First, laws that criminalise HIV transmission, non-disclosure, and exposure need to be repealed. Second, enact comprehensive anti-discrimination protections that cover employment, education, healthcare, and housing. Third, end mandatory HIV testing for employment, military service, and immigration. Fourth, remove laws that help to fuel stigma and drive people away from testing and treatment. Fifth, implement targeted public education and other campaigns to promote the dignity and rights of people living with and most affected by HIV. Sixth, invest in community-led and other civil society responses to help reach individuals who need prevention and treatment services.

In Guyana, 70 per cent of participants who received follow-up support like peer counselling returned to care, compared to only 40 per cent of those without such support. Organisations led by people living with HIV are most effective at reaching marginalised populations. Healthcare providers must ensure absolute confidentiality for every patient and provide quality, compassionate care without exception. We must implement zero-tolerance policies against discrimination in our hospitals and clinics and provide ongoing training for all healthcare workers.

In the communities, we have a collective duty to challenge the myths that have persisted for 40 years. We must spread the fact that undetectable equals untransmittable. People on effective treatment who have an undetectable viral load cannot pass the virus to others. This scientific fact must become common knowledge across our islands.

Every individual has a role to play. We can use our voices in our schools, our workplaces, and our places of worship to spread the message that HIV is a manageable health condition, not a moral failing. We must choose inclusion over exclusion and compassion over judgement.

Let us commit to leaving no one behind. We have the science to end the AIDS epidemic, but we need the political and social will to end the stigma. Dignity is the cure we have been waiting for.

Dr Richard Amenyah is the former UNAIDS multi-country director for the Caribbean; Jaevion Nelson is UNAIDS Caribbean advisor for community support. Send feedback to jamaica@unaids.org or at @UNAIDSCaribbean on X.