Fighting in silence: The untold stories of learners and teachers living with HIV

Homa Bay County Department of Health’s Research, Learning and Innovation Co-ordinator Justus Ochola was sensitizing residents of Unga village on HIV prevention measures. (James Omoro, Standard)

Margaret*, a Grade Six pupil in Busia County, joyfully plays with her classmates.

But behind her cheerful demeanour  is a 12-year journey of resilience.

Born with HIV, she has grown into an outspoken champion for treatment adherence among her peers.

“My mother told me I was HIV positive, and though I did not understand the disease much, I blamed her for having me acquire it. It hit me the disease was serious when she said I needed ARVs to live. I accepted, to live with it,” recalls Margaret.

Uptake of ARVs more among children she regrets comes with fatigue.

“After accepting my HIV status, I decided to openly talk about the disease to my peers, including importance of taking drugs,” adds the pupil.

Two of Margaret’s friends are aware of her status, among them Peter*, also in Grade Six, who battled drug fatigue after years on treatment without proper disclosure.

“I did not see the point of taking ARVs because nobody had explained why it mattered. But amid resistance, my health kept getting worse until I was told the drugs were the only way to stay alive,” says Peter.

Peter admits he often pretended to take his medication, hiding the pills under his bed, but the poor adherence compromised his health, prompting Margaret to intervene.

“I went to his home every evening to make sure he took his drugs. Sometimes he would pretend to swallow them, but we managed to help him get back to proper treatment. His viral load is now under control,” recalls Margaret.

In a nearby school, Beatrice, a Form Four student recounts a similar journey. She took ARVs for years without knowing the reason.

“My mother never told me how I got HIV, even though I kept asking. She avoided the topic but expected me to take my drugs.”

Disclosure finally happened when she was in Grade Four.

“After years of inquiry into my HIV infection, my mother explained that some people are born with HIV, while others acquire it by having unprotected sex with an infected person. And on this, I still blamed her for allowing me to be born with the virus,” says the student.

Even though the disease comes with stigma, for Beatrice, she accepted her status and has found support from teachers and peers.

“Many students living with HIV in school treat it as a normal condition,” adds Beatrice who envision becoming a nurse.

Beatrice’s mother, Jane says she discovered her daughter’s status in 2004, three months after birth, when the child fell ill.

Discordant couples speak to The Standard at a village in Kanyamwa Kosewe ward, Ndhiwa Sub-county. They decried shortage of PrEP. (James Omoro, Standard)

At then, her husband had died in a road accident.

As she struggled to come to terms with her status and that of her child, disclosure resulted into stigma.

She recounts a day when Beatrice’s cousins “shouted at her not to play with them because they did not want to get infected with HIV”.

Though stigma took a toll on the student, she has since learned to live openly and bravely with her reality.

A few teachers are aware of her condition, allowing her seek medication without interruption.

Not only do learners struggle to overcome stigma, teachers are also faced with stigma in school, with the society fearing having those living HIV positively handle their children.

Francisca Atieno, a teacher recalls confining her HIV status to a headteacher of a school she had been posted to, just for support in her resilience journey.

But shockingly, the headteacher would announce her status in a staff meeting without her consent. The move was embarrassing, and offended the teacher.

“I expected the headteacher to shield me, but she incited me against other teachers and learners. This was heavy, it took a toll on me,” recalls the mathematics and science teacher.

As fate takes its course, the headteacher would later acquire the virus, requiring Atieno’s support to walk treatment journey.

Not only was Atieno faced with stigma in school, but parents too. She recalls someday, she was confronted by a parent while attending her HIV clinic.

The parent’s intention was to incite parents against having the teacher handle learners, for fear of infecting them with the virus.

“It is at times heart breaking for a teacher who is HIV positive to handle learners because the society believe they can infect their children, just by interacting with them. At times learners just ran away from HIV positive teachers,” observes Atieno.

Today, Atieno uses her classes to teach learners about HIV, both the science and the lived realities of adherence.

“In mathematics, we talk about numbers and HIV prevalence. In science, I take learners through adherence, the rules governing HIV management, and the dos and don’ts for people living with the virus,” she explains.

She also teaches hygiene as part of the curriculum that helps prevent infections.

Atieno’s connection to HIV education is deeply personal.

She recalls falling sick, being treated for malaria, but failing to recover, only to be diagnosed with HIV.

Atieno was a widow. Her husband had died in a road accident, and she wondered how she would cope alone.

Though she overcame the stigma, she is worried about teachers hiding their status from spouses.

“A married man can take ARVs for three years without the wife knowing. Even a teacher can hide drugs in a locker. How then will the family know?” she poses.

Atieno tested positive in 2005.

The national chairperson of the Kenya Network of Positive Teachers (KENEPOTE), Anne Okaro has become a voice for educators living with HIV.

KENEPOTE, was founded in 2005, as a network of teachers when HIV was declared a national pandemic. At then, number of teachers dying was high, with the disease thought to be chira (a curse).

Okaro recalls the early years where many teachers only knew their HIV status after losing their spouses.

“Teachers died, many struggled with opportunistic illnesses, while a number silently battled shame as the disease was associated with immorality. KENEPOTE with support from Teachers Service Commission provided safe space to grieve, learn, and reclaim dignity,” recalls Okaro, who has lived with HIV for 26-years.

Nevertheless, what troubles Okaro is the resurgence of deaths among teachers living with HIV that is likely to widen with funding gap.

To eliminate the disease, she calls on Ministry of Education with support from National Syndemic Disease Control Council (NSDCC) to partner with KENEPOTE in supporting more teachers.

But even though stigma among teachers and learners has reduces nationally, some counties continue to struggle. For example, in Busia, silence around HIV remains heavy.

At least 519 teachers are living with HIV across 18 sub-counties, with Matayos leading with 120 cases, a number Okaro says is alarming, with a section of learners stigmatised by a teacher.

Additionally, 4,400 teen pregnancies have also been documented in Matayos Sub-County.

Data by NSDCC reveals last year, Kenya recorded more than 240,000 adolescent pregnancies, with more than 17,000 cases of defilement involving adolescents aged 10 to 17 years.

Additionally, the data shows there are an estimated 80,252 adolescents aged 10-19 living with HIV, with Busia County accounting for three percent (2,400).

The numbers according to Senator Catherine Muuma a champion for ending triple threat (adolescent pregnancies, sexual gender based violence and HIV infections), is alarming, requiring quick action.

“This (numbers) is unacceptable. These numbers should trouble every leader, every parent, every citizen. We came here to speak to boys and girls in secondary schools to encourage them to take charge of their lives and refuse to become part of these statistics,” regrets the senator.

She adds, “I am deeply concerned that we have reached a point where we no longer care what happens to these children. We have a return-to-school policy for girls who become pregnant, but return to school is easier said than done,”

The law maker emphasises that the country can no longer rely on policy statements alone, but implementation must be tracked, measured and enforced.

Muuma adds that the Ministry of Education should start monitoring the return-to-school policy, to know number of girls drop out of school because of pregnancy, and those who enrol back to school.

Also, perpetrators of sexual offences should be arrested, and prosecuted.

However, according to her, majority of girls fall victims of triple threat because of poverty.

Due to poverty, a number cannot afford essential items like sanitary towels an issue that pushes them into transactional relationships with boda boda riders and older men.

“Girls should not be punished for being poor,” she argues. “Why should a girl be forced into a transactional relationship just because her family cannot afford basic items? Why should her life trajectory be derailed because her mother is struggling?”

She insists that providing essential hygiene products must no longer be seen as charity but as a right anchored in public education financing.

“Sanitary towels should be part of what is delivered in every school. These items should not be one-off donations, they should be integrated into capitation and infrastructure budgets. Every girl deserves dignity, and no girl should miss school because of something so basic,” says the law maker.

According to her, addressing the triple threat requires a mix of accountability, policy enforcement and compassion.

Report by the NSDCC shows adolescents remain the most vulnerable group in the HIV response.

“Last year, 2,799 adolescents acquired HIV. Every week, 54 girls become newly infected,” reveals Jenny Gakii, NSDCC coordinator regional offices. “These numbers reverse gains made in the national response.”

NSDCC links rising infections with teenage pregnancy, sexual abuse and structural inequalities.

“Early pregnancies translate to school dropouts, poverty and cycles of abuse. Girls under 18 cannot legally consent, meaning most of these cases amount to defilement,” adds Gakii.

Gakii notes the need of addressing underlying drivers that result in sexual and gender-based violence, harmful norms and lack of protection.

“All actors must be intentional. If we fail to invest in adolescents, we risk losing a generation,” says Gakii.

Dr Douglas Bosire, Acting CEO of the NSDCC, notes that work place policy recently adopted will help enhance prevention of HIV and adherence on treatment.

However, he acknowledges challenge in addressing health and well-being of adolescents aged 10 to 19 years, age set that is vulnerable to sexually transmitted diseases, such as HIV infections and early pregnancies.

“A child aged 10 to 19 should either be in primary school, high school or beginning university studies, but instead, we have to take them out of school to manage their pregnancies. And if they are fortunate enough to carry a pregnancy to term, they must care for their children,” says Bosire.

He adds, “Dropping out of school creates a cycle of poverty. The bodies of these children are not developed enough to carry the pregnancy to term, they face trauma, even if they are later able to return to school.”

To address early pregnancies, new HIV infections, sexual gender-based violence, and improve sexual education, the NSDCC is running Triple Threat Campaign.

This initiative brings together key stakeholders, including chiefs, security forces, and the Ministry of Education.