Discrimination and stigma remain a major challenge for HIV+ people in South Africa, according to the 2024 HIV Stigma Index 2.0 report, which found that more than half (54.6%) of these people have experienced shame or guilt about their HIV positive status at some point in their lives, writes Faith Mutizira for Health-e News.
The report was launched last week by Duncan Moeketsi from the National Association of People Living with HIV and Aids (NAPWA), co-principal investigator of the research, which had surveyed more than 5 000 people over 15 with HIV in 18 health districts countrywide.
It showed a lack of trust in the healthcare system among key populations, including sex workers, men who have sex with men (MSM) and people who inject drugs. Twelve percent of people in this population say that they have, at some point, avoided health services.
On a positive note, 73.2% of the participants said they felt comfortable disclosing their status to family, suggesting that they felt they would receive support and courage. More than 50% said they were comfortable disclosing their status to friends and partners.
The researchers highlight areas of concern where participants reported cases of abuse and discrimination in public health facilities. But also alarming were reports of participants being coerced into taking contraceptives or getting sterilised.
Internalised stigma can lead to feelings of shame, fear of disclosure, isolation and despair, and these emotions were highest among men at 57.3% and 53% for women. Among young people aged 18-24, these feelings were 68.6%.
Overall, internalised stigma was higher among key populations: 65% of drug-users experienced feeling shame or guilt about their status, followed by 60.3% of transgender people, 57.7% among MSM, and 56.3% among sex workers.
These groups were more likely to report discrimination or external stigma.
“Key populations have also reported physical harassment or being hurt based on either their sexual or gender identity, while 12.9% of drug users had been physical harassed or hurt,” said Moeketsi.
Nearly a quarter (23%) of key populations said their families had either made discriminatory remarks or gossiped about them because of their HIV status. Around one in five (19%) felt excluded from family activities because of their HIV status, and 12.8% said they have been verbally harassed.
Even in healthcare settings, these groups don’t feel safe: 12% avoided healthcare services, and 8.7% said they’ve been concerned about their privacy or their confidentiality not being respected.
Concerning cases
Stigma in the healthcare setting continues to be an issue, with 3.2% of participants saying they’ve been advised not to have sex because of their HIV status; 3.1% reported being insulted or gossiped about: 2% reported verbal abuse, including name-calling, yelling, and scolding.
“Even though the numbers are relatively small, with South Africa having made so much progress in its HIV response, we should not be having these kinds of cases,” Moeketsi observed.
Alarmingly, women were the most affected by stigma and discrimination from healthcare staff, with 3 194 (8.3%) reporting experiencing stigma in health facilities. Particularly concerning was that 1.1% of participants were told not to have children, and 2.1% reported being pressured to take ART during pregnancy.
Moeketsi said ART was a cornerstone of HIV management, but it should come with information, and no one should be forced to take treatment if they are not ready.
“These are concerning cases: 0.6% of participants report being pressured to be sterilised, 0.4% have been sterilised without consent, while 1.3% were told to use a specific contraception to receive treatment. It might look like a small number, but it’s worrying and something that we need to pay attention to.”
Recommendations
Mluleki Zazini, national chairperson of PLHIV, said people with HIV, especially women-led organisations, must be at the forefront of designing and implementing all initiatives. He said cultural sensitivity training was key.
“We need to deliver community-informed training modules for healthcare workers to provide stigma-free care, prioritising women, adolescent girls, sex workers, people who use drugs, and LGBTQ+,” he said.
In addition, the Department of Health, SANAC, along with networks of HIV+ people, need to design national awareness campaigns addressing psychological distress, low self-esteem, and reluctance to seek care.
“The Department of Social Development must provide resources for counselling and support groups, and the Department of Women, Youth & Persons with Disabilities must ensure gender-sensitive approaches to disclosure,” Zazini said.
See more from MedicalBrief archives:
Right to Care: South Africa’s women bear the brunt of HIV stigma
Automating HIV treatment and testing to reduce stigma
Three decades on, stigma still undermines HIV prevention and treatment