Why 58 per cent of people with HIV delay starting treatment
Fear of stigmatisation is one big reason why most people do not go for HIV testing
What you need to know:
- Stigma remains a significant challenge, with 68.4 per cent of respondents reluctant to be tested for HIV for fear of negative reactions from family, friends, employers and community members.
More than half of people living with HIV in Kenya have delayed starting treatment because they fear their family members will discover their status. This is according to people living with HIV (PLHIV) stigma index report, which highlights the continuing impact of stigma and discrimination despite advances in voluntary HIV testing and access to treatment.
The National Empowerment Network of People Living with HIV and AIDS in Kenya found that 57.5 per cent of people living with the virus had postponed starting treatment because they were worried about disclosing their status, while 58.6 per cent felt unprepared to cope with a diagnosis. In addition, 43.7 per cent feared interactions with health care workers, and 39.4 per cent either missed appointments or decided to stop treatment altogether.
“Stigma remains a significant challenge, with 68.4 per cent of respondents reluctant to be tested for HIV for fear of negative reactions from family, friends, employers and community members. Although 62.5 per cent were tested voluntarily, 10.4 per cent were tested without their knowledge and 3.1 percent were forced to be tested without their consent,” read the report.
Within families, low levels of disclosure are evident. Only 56 per cent of respondents reported that their spouse was aware of their HIV status, and only 28.7 per cent had informed their children. Almost half (48.9 per cent) reported that their partners were also HIV-positive, while 36.5 per cent reported that their partners were not, suggesting a high level of undetected discordance.
Women experience higher rates of discrimination than men, with 46.3 per cent reporting verbal harassment compared to 40.5 per cent of men. A higher proportion of women reported being excluded from family activities (30 per cent versus 21.1 per cent) and social gatherings (30 per cent versus 25.8 per cent).
The study found that internalised stigma remains a significant problem, with 73.5 per cent of people living with HIV finding it difficult to disclose their status. More than 39.6 per cent felt ashamed of being HIV-positive, 39.5 per cent felt worthless and 35.2 per cent experienced self-stigma.
The emotional toll is clear as 34 per cent reported difficulty finding love, 30.5 per cent struggled to cope with stress or form close relationships, and 22.2 per cent isolated themselves from family and friends. In addition, 20 per cent chose not to have sexual relations, 19 per cent avoided social gatherings and 13.5 per cent did not seek medical care when needed.
"Despite progress, internalised stigma remains a significant problem and requires continued efforts to help PLHIV live with dignity. The prevalence of discriminatory comments reported by participants in various contexts is worrying as it affects how people living with HIV perceive themselves and interact with the health system.
“Greater efforts are needed to empower PLHIV to address these issues through media advocacy and concerted lobbying of government officials and policymakers for stronger protective legislation. While there have been improvements such as reduced discrimination in the workplace and fewer cases of forced HIV testing, it is crucial to clarify the role of the HIV court and educate communities about the protection of privacy," the report added.
The report also highlighted widespread human rights abuses. Among PLHIV, 15.3 per cent reported that their status had been involuntarily disclosed by health workers without their consent, while 29 per cent experienced breaches of confidentiality in their medical records. Sexual and reproductive health rights were also violated, with 12.6 per cent pressured to be tested for HIV during pregnancy, 6.7 per cent forced to use a particular method of contraception and 3.2 per cent advised to terminate a pregnancy. In addition, 3.8 per cent were told not to have children because of their HIV status and 0.8 per cent were sterilised without consent.
Key populations, including transgender people and men who have sex with men, experienced increased stigma. Among transgender people, 48.3 per cent reported verbal harassment, 31.7 per cent experienced extortion and 28.3 per cent avoided seeking health care because of discrimination. Among men who have sex with men, 48.2 per cent experienced rejection from family, while 50 per cent experienced discrimination from friends. Fear of being outed led 39.5 per cent to avoid seeking health care, while 38.8 per cent refrained from disclosing.
