I did not choose HIV, the virus chose me

Earth must have adopted another sun, hotter than itself. And it dwells in Kilifi. 

“Highs of 32 or so the radio forecasted,” Mohammed Ali says, seemingly reading my mind.

At their home in Mabirikani in Kilifi Township, he ushers us into a stone house that is half-thatched and half iron sheet roof. His grandmother is grating coconut on a mbuzi (coconut grater).

“Meet my grandmother. She feeds me well. I am her provider, her housemate … technically her husband,” 23-year-old Ali says roaring with laughter.

“She refused to wait for me and hurried to marry my late grandfather,” he continues and slides into a well-worn couch next to his grandmother, his shoulders heaving from laughter.

His grandmother is laughing too. She has tears on the corners of her wrinkled eyes. She is trying to stop, but the laughter has its way with her. Then she stops suddenly.

“Silly boy, go talk to your friends. I’m preparing your favourite meal for dinner: Cow peas in coconut sauce with white rice,” she waves us off.

Once out of earshot, Ali says: “I have a girlfriend. She will soon be meeting my grandmother. I love her. She loves me … (pauses) I never knew I would find love. I was born HIV-positive. She knows it. I am HIV-positive and I’m loved!”

Ali carries two plastic chairs away from the scorching sun, and places them under the shade of a tree next to his brick house that is still under construction.

“I was seven years old when I started taking medication, but I did not know why I was taking it, nor did I know when I would stop. I was put on medication after my mum fell ill. She was very ill. She tested positive then,” Ali recalls.

When his parents died, he moved from Msambweni to Mabirikani to live with his maternal grandmother.

“I was in a support group for children at the hospital where they told us never to skip a dose. They told us we’d take medicine for life, and that if we didn’t follow the doctor’s instructions we would fall sick, very sick.

TOUGH NEWS

“When I turned 13, I went to hospital for a HIV test. That’s when I found out I was positive.”

Ali took the news in his stride, and now volunteers as a youth counsellor for a programmed run by the National Aids Control Council at the Kilifi County Referral Hospital.

“It is tough (for boys) at adolescence. You desire to be with a woman – It is inevitable. But you have to use protection. You know, use condoms. Unlike us, those without the virus can choose not to have it. I love my girlfriend and I will always protect her from getting the virus from me,” he says.

Behavioural factors such as age of sexual debut as well as use of condoms, or lack thereof, are a factor in vulnerability to HIV infection. According to the Kenya Demographic Health Survey of 2014, 55 per cent of men and nine per cent of women reported having had first sex before the age of 15.

Ali beckons us for a walk to the Kilifi County Referral Hospital, where he volunteers as a peer educator at the Youth Centre. He introduces us to 26-year-old Sidi*, a fellow peer educator. Just like Ali, Sidi was born HIV-positive. 

TUBERCULOSIS

“My mum died when I was three. I struggled with tuberculosis for a very long time. I was constantly in and out of hospital. Then when I was 13, the doctor suggested that I take a HIV test. That’s when I found out my status and started taking antiretroviral medication.

Knowing her status came as a shocker, and with it Sidi felt her adolescence float away.

“Some of my friends had boyfriends and some even kissed. I felt left out of the ‘fun’ my peers were having. There was also stigmatisation when I went to high school. Some students made fun of me for taking medication every day. I could feel their eyes piercing through me. I was different. I couldn’t even share a plate with anyone. No one wanted my utensils near theirs. Being positive was such a huge burden to bear.”

Sidi came out of the other end all right, and went on to become a high school teacher. This has come in handy in her work as a peer educator.

“I look young, and when I mingle with the youth, they disclose a lot to me. It is a privilege. Some of my students come to the clinic to get drugs and they find things easier knowing that I am here. They are comfortable talking to someone who understands them,” she explains.

Sidi’s experience with stigmatisation in high school is an all familiar story for children living with HIV in schools and even at home. 

Last year, President Uhuru Kenyatta directed county commissioners and the ministries of health, education and interior to collect up-to-date data and prepare a report on all children living HIV/Aids.

They were also asked to collect information on the children’s guardians and HIV-positive pregnant and breastfeeding mothers. The move was flagged as illegal by civil society groups, who saw it as a platform for further stigmatisation of children in schools, who still face prejudice from their peers and teachers.

DISCRIMINATION AND MISTREATMENT FROM TEACHERS

“It is against the Constitution, which guarantees that the state shall not discriminate against any person based on health status. The directive is intended to lower the dignity of those living with the disease and cause them stigma,” said the Kenya Legal and Ethical Issues Network on HIV and Aids (KELIN) lawyer Allan Maleche when he filed a petition in court to stop the government from implementing the decree in 2015.

The lawyer argued that disclosure of names is contrary to the HIV/Aids Prevention and Control Act, which stipulates that the names of those affected should be kept confidential.

“Some of our children get mistreated and discriminated against by teachers. Some have been left under guardians who have mistreated and neglected them,” says Kilifi County HIV/Aids Co-ordinator Fauz Ibrahim.

The challenge according to health officials, is that HIV-positive youngsters lack information about their status and caregivers lack the skills or preparation to disclose the status to the child; this means that the kids don’t take medication or protect themselves from reinfection (and their partners from infection) when they become sexually-active.

 “The challenge is getting parents to disclose their status to the children. We need to train health workers to help parents disclose their status.

“There are some children who have been lied to that the ARVs they are taking are TB drugs and they wonder: ‘For how long I will be on this drugs?’

“And as they come across contrary information they start asking questions,” says Ibrahim, adding that the integration of young people born and living with HIV into county programmes has boosted ARV uptake.

“They are our best ambassadors when it comes to behaviour change communication among their peers. We have three support groups in high burden facilities, and it helps reduce stigma among themselves. We are proud of them,” Ibrahim adds.

Sidi shares that being young and positive comes with its own challenges.

“We get feelings. We get attracted to the opposite sex but we have to be very cautious about whom we tell and when to disclose our status to our partners.

“Most of us look healthy and we are, by eating well, exercising and most importantly, taking our drugs. Many are the times I have told someone my status and they don’t believe it.

“They tell me: ‘You are beautiful! You are healthy! You cannot be HIV-positive’,” says Sidi, highlighting the ignorance of some of the young people she interacts with. As a result, some go as far as having unprotected sex with partners whose HIV status they don’t know. 

“People assume that you can tell the status of a person just by looking at them. They say: ‘But you look so healthy, you cannot be positive!’ It’s a lie. That is where people go wrong. You only get to know the status of a person by going for a test.

“If you don’t get tested you will never know if the person is negative or positive. If you decide to have unprotected sex then you have put yourself at great risk.”

 “It is even worse for women. We are not expected to propose use of condoms or else we will be labelled promiscuous. This compromises our safety. We choose to be silent. We take grave risks.”

Sidi says that condom may be an unspeakable word in a place like Kilifi where a highly religious population focuses on preaching abstinence, but only correct and consistent use of protection can help lower the rates of HIV infection.

Condoms also protect those who are already infected from contracting a different strain of the virus that might render their current medication ineffective.