Kenya has made commendable steps in the fight against the Human Immunodeficiency Virus (HIV) amidst stigmatisation, isolation, ridicule, and insults that some survivors still go through.
Norah*, a youth living with HIV shares her painful story of living in isolation and discrimination from society.
Her story starts to weigh back from childhood since her infection was a result of mother-to-child transmission at birth.
“I was infected at birth. Throughout my childhood, my mother used to instruct me to take the drugs but never explained to me what it was curing,” Norah narrates.
Norah’s case is a common one where HIV is transmitted from a mother to her baby during pregnancy, at birth, or when breastfeeding.
The 20-year-old reveals that she came to know about the Anti-Retroviral drugs (ARVs) when she was in class seven.
The revelation of why she was using ARVs came after her visit to a health facility to refill her medication when the medic in charge explained to her about the condition.
This is because HIV weakens a person’s immune system by destroying cells that fight diseases and infections.
However, despite the lack of an effective cure, using ARVs can control the disease.
“I was told that I was HIV positive but I could not accept the condition. On several occasions, I contemplated suicide. Thanks to my brother who one day saved me on the brink of death,” she recalls.
After counselling and encouragement from family, Norah carried on with her education and joined a boarding secondary school.
Her classmates were always curious about the kind of medication she took and some even inquired of which she openly shared the information about her status.
“One day I went to play and when I came back to the dormitory, I found my box and bed outside. Upon inquiry, the other students told me they did not want to associate with someone who is HIV positive,” says Norah teary-eyed.
That marked the beginning of her woes in school as she ended up moving from one institution to another to avoid discrimination and harassment.
There are other ways through which one can get infected with HIV which include sexual intercourse, sharing needles, syringes, or other drug injection equipment among others.
27-year-old Mercy*She got infected after engaging in a sexual relationship that left her pregnant.
Upon finding out about her status she visited a health facility where she delivered and the doctor placed her baby under newborn ARV regimens.
Back at home, she tried to hide her status from relatives for a while before they found out based on the kind of medication she was taking.
That’s when she started facing discrimination since her relatives feared that she could get them infected.
“When my cousin realised that I was HIV positive, the whole family started hurling insults at me. They refused to eat any food that I prepared. I was separated from my nephew whom I had been caring for. They feared that I could infect them,” says Mercy.
Mercy says that her close relatives ran away from her prompting her to seek refuge in a good Samaritan’s house.
Thanks to a friend who has accepted her status she now engages in menial jobs in the city of Nairobi.
Based on her experience of facing discrimination, she thinks that one should only disclose HIV status to a trustworthy person.
According to the World Aids Day Report 2022, the country recorded an increase in new HIV infections with more than 2,000 new cases from 32,025 in 2021 to 34,540.
Similarly, a recent report by the National Syndemic Disease Control Council(NSDCC), raises concerns over the infection rates among young adults.
It states that people aged 15-29 years accounted for 61 per cent and 52 per cent of all new infections in 2020 and 2021 respectively.
However, there is a glimpse of hope of leading normal lives by taking ARVs every single day as prescribed by the medics.
Ruele Okeyo is the true definition of a youthful HIV champion who has decided not to fight a silent battle against HIV.
Okeyo,26-year-old tested positive for HIV in September 2020 and is aggrieved about the fact that he got infected after his first sexual encounter.
“I got infected in my first sexual encounter. I wish I had even contracted a curable Sexually Transmitted Infection (STI),” says Okeyo.
Upon learning about his HIV status, he thought of transmitting the virus to others but he instead made a conscious decision to channel the anger he had into something positive.
This resulted in him starting an advocacy-oriented podcast based on creating awareness of HIV and Sexual Reproductive Health Rights.
He also uses his social media handles to advocate and create awareness about HIV.
“I have taken my medication in hotels, in matatus, around the National Archives building in Nairobi, in the airport…,” Ruele recounts.
He says that his gesture to post photos of himself while using the ARVs has attracted many living with HIV to reach out to him for motivation on how to stick to their medication.
“Stigma still exists to this day. My work is to demystify all these notions that people have in regard to people living with HIV and the challenge that is there for people taking their medication,” says Ruele.
Felix Riunga, infectious disease specialist in Nairobi says that it’s important for one to make a wise decision to remain healthy and protect others once tested positive for the virus.
“A patient should think about the well-being of him/herself and others too. Once tested positive one should first accept the condition, take a healthy diet, and regular exercise to increase strength and fitness,” Riunga says.
Riunga says that the process of self-acceptance does take time but after that most patients do find it easy to disclose their status to their relatives and even recommend blood tests for them.
In some instances, the patient might not get an undetectable viral load or have a high viral load (200 copies of HIV per millimeter of blood), but can still choose to protect their partners.
“Patients who cannot keep an undetectable viral load should advise their partners to use PrEp(pre-exposure prophylaxis)or practise safe sex like the use of condoms) Riunga added.
The survivors have embraced self-acceptance and are calling on those infected to take up medication while urging those who are HIV-negative to be vigilant.
A project dubbed ‘Youth Care’ that is run by the Network for Adolescent and Youth of Africa- NAYA Kenya-, Pediatric-Adolescent Treatment Africa (PATA), and Ambassadors for Youth and Adolescents Reproductive Health Programme (AYARHEP) has offered a glimmer of hope for youth living with aids in different counties.
It aims at ensuring that youth living with HIV access treatment, services, and lobbies for the implementation of policies.
“So far, we celebrate that we have worked with a number of young people. We have tried to spread the word about the HIV services that are available in our health facilities. Because the project is targeting to create a supportive environment at the facilities, within the community, and at policy levels. We have tried to work with young people to submit a memorandum to the County Assemblies and the National Assembly and those have been really impactful,” Nelson Akoth, Youth Care program’s officer explains.
He however laments that frequent stockouts of essential supplies such as condoms at public health facilities have been a major challenge in the fight against HIV.
More youth living with HIV are living to tell their stories of hope and resilience as they also take their medication religiously to suppress their viral loads to undetectable and therefore curb transmissions.