- Young people living with HIV in West and Central Africa say they still face abuse, discrimination, and disappointing healthcare services. This reality, in turn, makes ending the epidemic as a public health threat in the next decade a lot more difficult.
E.L. found out she was HIV positive eight years ago. When her husband cautioned her against telling others, she thought he was exaggerating. Then, one day, while chatting with her mother-in-law, she seized the opportunity to ask if the older woman could associate with someone living with the virus.
“Her response was appalling,” remembers E.L., who asked to be identified by her initials for safety reasons. “She said even if her child were positive, she wouldn’t eat with them again.”
The 28-year-old is resident in the Ashanti region of Ghana, where those living with HIV continue to face stiff stigma. People who have contacted the virus are forced to keep their status secret out of fear that they will be ostracised or harmed, she says.
HIV originated in Cameroon, West Africa, in the early 20th century and became a pandemic in the 1980s. Since then, though much progress has been made to push back the spread and the infection’s deadliness, it has refused to go away. According to the World Health Organisation (WHO), HIV has killed over 35 million people so far, 700,000 of those in 2020.
Sub-Saharan Africa has remained the most-affected region, recording not only the highest prevalence and deaths but also the greatest number of new infections. Over two-thirds of people living with HIV across the world are in Africa and nearly two-thirds of new infections are from the continent.
Among the targets set by the United Nations through the Sustainable Development Goals (SDGs) is to end the AIDS epidemic by 2030. The Joint United Nations Programme on HIV/AIDS (UNAIDS), on the other hand, plans that 95 per cent of people living with HIV know their status, of which 95 per cent are on treatment, and of which another 95 per cent are virally suppressed — all by 2025.
Similarly, ambitious targets set for 2020 had not been met. So this year, the theme of this year’s World AIDS Day, celebrated every Dec. 1, is ‘End inequalities; End AIDS,’ to draw attention to people who have been left behind in the HIV response and make access to services more equitable.
Unending discrimination, threat to life
Achieving global targets within the next decade will not be a smooth sail, especially as misconceptions about HIV are still widespread across Africa, making access to healthcare difficult for those affected. The infection is assumed to be a death sentence and people are often hostile to those who have it.
When Ismaël Nkono, 23, who lives in Yaoundé, Cameroon, got diagnosed with HIV in 2017, he found strength in his mother and family. He, however, notices that many people in the larger society are still ‘very ignorant’.
“Information about HIV is not accessible to everyone. Many still believe that living with it is something like a malediction, that it is witchcraft,” he says. “I want to be seen as a normal person. I want to share moments with people without them looking at me as if I was [different]. That is the real problem.”
In Ghana, E.L. works with a non-profit, Young Health Advocates Ghana (YHAG), to prevent the spread of HIV among young people as well as provide educational and psychosocial support. As a paralegal, she attends to cases of human rights violations and refers relevant ones to lawyers. Playing these roles, she continues to see many people have their rights trampled on.
In one of the cases, an HIV positive woman was severely beaten by a man who saw her with his son and claimed she wanted to infect the boy. At the health facility, they asked for a police report so that the assaulter could be arrested. But the woman, knowing she would have to divulge her status at the police station and it might leak to others, decided to let the matter go.
“When she came out from the hospital, the man threatened that if he saw her with any man in the community, he would kill her. It was then that the woman decided to approach us. The man was so proud to tell us that before somebody infects others with the virus, it is better to kill that person.”
Even health workers are not exempted. According to E.L., HIV is treated like a contagious disease in many facilities and health workers would often wear multiple hand gloves, three or more, when a patient discloses their status.
There have also been instances when doctors do not respect their patients’ privacy. One person complained to E.L. last year during the annual stigma index study that her doctor had called her husband to inform him she was HIV positive. By the time she got home, the news had spread.
“She was assaulted. The time she came to us, she wanted psychosocial support. We were in the process of giving her everything when she passed on because of the trauma. We lost her last year,” E.L. says. “She couldn’t take it that everybody was against her and the whole community saw her like she was a devil.”
Abdulrazaq (last name withdrawn), an entrepreneur based in Abuja, Nigeria, has been a victim of mistreatment from those who should know better too. He was a first-year pharmacy undergraduate when, urged by his peer educator-friend, he took an HIV test and discovered he was positive. But because of how workers at the facility openly gossiped about their clients, he left and stopped answering their calls. He soon fell sick after returning to school. He started losing weight and had constant headache. He eventually treated both HIV and Tuberculosis. He could not walk, was bedridden for six months, and had to drop out of school.
He has not returned to school since then and has instead focused on raising money to sponsor his siblings’ education. He now gets his antiretroviral drugs regularly from a facility nearly 200km away in Kaduna State (North West). He agrees it would be simpler if he transferred to a different facility in Abuja, but two concerns prevent him from doing so.
One, the service in Abuja could be worse. Already, in Kaduna State, when his collection date is due, he has to wake up at 6 a.m. WAT, get to the facility half an hour later before the nurses and cleaners, drop his card, and get assigned a number. He then waits to get called. The process takes several hours.
The second reason is he fears he is more likely to run into familiar faces in Abuja. He had fled from the facility where he first got tested for the same reason.
“I don’t see why you’re working in a place like that and there’s no confidentiality. Just imagine somebody meets me and says, ‘I heard you’re HIV positive.’ ‘Where did you hear it from?’ He now says they’re discussing you now. Do you think I’d go back to that place again? I’d even prefer to even die than return there because if they can be giving me drugs and still talk about my health, then I am not safe,” he says.
“And they are still doing it. In fact, I have friends who are positive and don’t go back to their health facilities because of this.”
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