Tue | Dec 3, 2024

Richard Amenyah | Choosing life over death

A journey of hope and resilience against HIV-related stigma and discrimination

Published:Tuesday | November 5, 2024 | 12:07 AM
An unnamed woman who is living with HIV/ AIDS. Richard Amenyah writes: Stigma and discrimination continue to have a profound impact on the national response to HIV.
An unnamed woman who is living with HIV/ AIDS. Richard Amenyah writes: Stigma and discrimination continue to have a profound impact on the national response to HIV.
Richard Amenyah
Richard Amenyah
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A few weeks ago, when I returned to Jamaica after visiting my family, I took an airport taxi home. My driver, Tahjay York (not his real name), who has been driving for several years, greeted me warmly. As we settled in, he showed me a picture of his wife and children just before an ad about HIV came on the radio. Noticing my T-shirt, which read, ‘End Inequalities, End AIDS’, Tahjay turned to me and asked, “What work do you do, sir?”

I explained that I worked for UNAIDS, an organisation dedicated to ending AIDS as a public-health threat. Our conversation opened a window to discuss the efforts to tackle the socio-cultural, economic, and other challenges surrounding HIV. Curious about his perspective, I asked Tahjay if he was doing anything to combat HIV.

Tahjay smiled and reached for a bottle of pills from the side of his door. “This is the miracle medicine keeping my wife and me alive,” he said, revealing that they had been living with HIV for the past ten years, each taking just one pill a day. I was surprised by his openness but deeply moved by his story.

Tahjay is one of 14,735 Jamaicans living with HIV and on treatment to prevent the deterioration of his immune system and further illnesses. He shared his personal journey with HIV, which began with his wife’s diagnosis. As part of her counselling, he was advised to get tested, along with their child. While his child tested negative, he received a positive result.

Like many people who are diagnosed as HIV-positive, his initial reaction was a mix of shame, anger, and fear – fear of dying from what he once thought was an incurable, dreadful disease. Suicidal thoughts plagued him during those early weeks, which were the most traumatic for his family. However, the nurses and doctors provided unwavering support, initiating treatment and offering them hope.

NOT UNCOMMON

Tahjay’s reaction is not uncommon. Data from the Stigma Index, which was conducted among 557 people living with HIV in Jamaica and published in 2020, show that 53 per cent of people living with HIV say their HIV status makes them feel guilty, ashamed, ‘worthless, and/or dirty’. In addition, 411 participants (74 per cent) noted that they find it difficult to tell others of their HIV status, and 451 (81 per cent) reported that they hide their HIV status from others.

One Sunday morning after church, Tahjay called his wife, reaffirming his commitment to their family. He promised to do whatever it took to ensure that they stayed alive and could care for their daughter. This renewed commitment instilled hope in his wife, and together, they faced their new health reality. They remind each other to take their medication, go for refills, and undergo regular viral load and other laboratory tests. Tahjay indicated that his wife kept their medicines on their dining table so that they could remember to take their medicines with food.

When I asked why people were still coming into care and treatment late or dying without treatment, “Stigma is what’s killing people today,” Tahjay said. “I was lucky my wife and I accepted our status and recommitted to our relationship and to help grow and nurture our child. Now, we have another … who is HIV-negative,” he said. ‘’To beat this disease, you have to accept that you have HIV in your blood, and you are ready to live with it but won’t give it chance to harm or kill you,’’ Tahjay added.

PROFOUND IMPACT

Stigma and discrimination continue to have a profound impact on the national response to HIV. Many delay testing for HIV, and some people who are diagnosed as positive even delay getting on treatment because they are worried about how people will see and treat them. Again, this is not surprising because the stigma index survey showed that 38 per cent of respondents reporting that anticipated stigma caused them to delay HIV testing and 30 per cent reporting that they delayed HIV treatment due to such fears.

Tahjay’s message to Jamaicans and all Caribbean people is clear: “Living or dying from AIDS is a personal choice. No one should die of AIDS today because it is no longer a death sentence. You have to intentionally choose the path of life and forget about what others might say about you. The ball is in your court. Antiretroviral drugs work, and they are keeping my wife and me alive because we chose the path of life.”

That 30-minute ride from the airport became one of my most inspiring short journeys in Jamaica, leaving me with a renewed sense of hope for all people-centred and community-focused public-health interventions. Together, we can defeat stigma and discrimination by first accepting the reality of our HIV status and making a deliberate personal choice to choose life by accessing antiretroviral drugs as Tahjay and his family have demonstrated. Support from our immediate families, friends, healthcare workers, and community members provides essential emotional and psychological strength to face the mental-health challenges associated with HIV.

We can end AIDS if we first defeat its associated stigma and discrimination.

Dr Richard Amenyah is a medical doctor and public-health specialist. He is the director for the UNAIDS multicountry office for the Caribbean. Follow him on X (formerly Twitter) at @RichardAmenyah or @UNAIDSCaribbean. Send feedback to jamaica@unaids.org.