Misinformation 'still a major catalyst for HIV-related stigma'

24 per cent of women and 17 per cent of men aged between 15 and 49 years have discriminating attitudes towards individuals with HIV. [iStockphoto]

Two decades have gone by since the first case of HIV was reported in Kenya in 1984 and, to date, some people are still going through stigma and discrimination despite the amount of information about HIV that has been shared over the years.

This is evident from the data released by the Kenya Demographic and Health Survey 2022 indicating that 24 per cent of women and 17 per cent of men aged between 15 and 49 years have discriminating attitudes towards individuals with HIV.

One such individual with HIV is Nereah Mwikali*, a mother of three and a Machakos County resident who is experiencing self-stigma and societal stigma, mostly from her own family.

Narrating her ordeal to The Standard, Mwikali says that she learned of her HIV status in 2011 when she attended the antenatal clinic for her second child.

This news broke her. She says that she felt like it was the end of her life as she had heard that people who get HIV do not live for long.

“I started taking medication for the sake of my unborn child and my husband but I did not accept the results,” she says. “I used to cry a lot thinking I was going to die but the nurses had told me if I take the drugs as guided, I would not infect the child, but I stopped taking them after I delivered.”

Societal stigma began the moment her family learnt of her status, and soon they began discriminating against her through their actions and words.

They would ask her not to touch anything in the house, saying she would infect them. They set aside separate utensils and other household items for her to use.

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“It was a traumatising period because all these made me hate myself and feel worthless, many times I wished death upon myself and my children,” she says.

Her husband did not accept their HIV-positive status. He turned to excessive drinking and became violent towards her, blaming her and at some point, even attempting suicide.

She ran away from her matrimonial home to seek refuge at her maternal home, but she soon after regretted her decision -- her mother and five of her siblings rejected her.

“By September 2021, my health was deteriorating fast because I had stopped taking my drugs and so my viral load had shot up. But the people I call my own turned against me with so much hate. If my aunt had not come to my rescue, I would have died,” she narrates.

She was taken to the hospital, went through counselling, finally accepted her status and began living a positive life.

According to Grace Muthoni, the Programmes Manager at Ambassadors for Youth and Adolescents Reproductive Health Programme (AYARHEP), most people with HIV face self-stigma and community or societal stigma contributed to by a lack of information on HIV.

AYARHEP has been giving information on sexual reproductive health for young people to make informed decisions regarding their sexual reproductive health rights focusing on HIV awareness.

Muthoni says that a person with self-stigma ought to seek support from organisations offering HIV programmes such as psychosocial support and interact with other people with HIV to talk to and share their life challenges.

She also advocates that society needs to be educated and understand that HIV is not a killer disease to embrace people with HIV because HIV does not define them.

“They might be living with HIV but are very productive, can be mothers or workers and can do anything every other ordinary person can do,” Muthoni says.

“It is a challenge that there is HIV stigma despite the different interventions and the information on HIV, but we recognise that there is still a gap in terms of misinformation and lack of comprehensive sexual education,” says Bozzi Badia one of the Youth Volunteers at AYARHEP.

He believes many people are afraid of talking about their HIV status for fear of stigma and urges them to join support groups that offer support.

Caroline Kinoti, the National Syndemic Diseases Control Council (NSCDCC) Head of County Support, says in the 1990s and early 2000 when there was no treatment available for HIV, the stigma levels were as a result of fear.

She equates this period to Covid-19 when people didn’t have enough information on how it is transmitted and how it can be prevented.

“As a council, we have shared information on HIV and those living with HIV can live their full potential as well as making sure there are drugs in every part of the country,” she says.