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February 21, 2019

Teens living with HIV share their fears and pain

When I started living with my aunt, she treated me differently... I had my own room, my own basin, I even had my own bed sheets. – Charles Otieno
When I started living with my aunt, she treated me differently... I had my own room, my own basin, I even had my own bed sheets. – Charles Otieno

“I do not wish to remember the year 2007. That year, I lost my eyesight after failing to take ARVs for three years. Sadly, it was not my wish not to take medicine. I was just a child, depending on my aunt to take care of me,” says 20-year-old Charles Otieno.

“That year, I also didn’t sit for my end of year exams. I was too sick.”

That is the part of Charles’s life that he wishes to completely forget. Not only did he go blind, he also received harsh treatment from his aunt, he says.

Charles moved to live with his aunt when his parents died of Aids complications. His mother died in 1995 and his father in 1997. He is the last born in a family of five.The rest are negative.

“When I started living with my aunt, she treated me differently. At some point I thought I was just getting 'special treatment' from her. I had my own room, my own basin, I even had my own bed sheets. My clothes and beddings were not washed together with cousins'," he says.

Charles was born with HIV. His uncles would send money to his aunt, who would then send the money to her sister in Sweden to buy ARVs.

Some of the ARV tablets for HIV treatment. Many children take them without proper information

HIV treatment in the 1990s was expensive, because the drugs were not free yet. At one point, Charles stayed for three years without taking the drugs. He says her aunt had spent the ARV money on other things.

“Sometimes I wish I knew why my aunt never used the money to buy drugs. I wish I knew. Nevertheless, I am grateful that my health never deteriorated for not taking drugs. I also thank my uncles who came to my rescue after they realised they were sending money to buy drugs and my health was not improving," he says.

Many other young people with HIV have had similar experience. Priscilla*, 21, has taken ARVs since birth, yet no one told her she had HIV.

She discovered her status in high school in 2010. Her parents died of Aids in 2009.

“One weekend in high school, officials from the health ministry came to school to give us a talk on HIV and later asked those willing to know their status to take the test. It was at that point that I knew I was HIV positive,” she says.

“Since I was staying with my uncle, after my parents died, when I told him about my status, he was not moved. To date he has never told my sister and I why he never told us about our status.”

Her younger sister, Charity*, is also HIV positive. Priscilla lived with her uncle in Kayole while her other three older sisters, who are negative, stayed with their aunt in Lavington.

“At my uncle’s place, I use to sleep with the house help. I was told that I can’t sleep with my cousins. Apart from that, they never ate any meal I prepared,” Priscilla claims.

“At that time, I had no idea why they were treating me like that until I knew my status. It’s really sad how they thought they could get HIV by sharing the same bed with me or even eating the food I cooked.”

Priscilla remembers the day their aunt found Charity, 8, playing with their cousin.

“When my aunt came back home from work she found my younger sister playing with her child. She quarrelled her and told her that she should not play with her cousin because she is HIV positive.”

Charity was told she is a burden and should be grateful that the aunt took her and two of her sisters in after their parents died of Aids.

Charity had her own bed, beddings, plate cup and spoon. The utensils were also washed separately.

Priscilla says at that point she vowed to complete her high school education and move in with her sisters.

She questions why her aunt, a former MP, could tell her own niece not to play with her child because of her status.

She claims her aunt even took her child to hospital to be given pre-exposure prophylaxis  to prevent infection.

Experts say stigma and discrimination of people living with HIV (PLWH) is slowing the fight against the epidemic.

The youth experience the worst form of stigma and discrimination, mostly from their relatives.

Statistics from the National Aids Control Council show that Kenya has 435,224 adolescents living with HIV.

Out of this, only 119, 899 know their HIV status. Of those who are HIV positive, only 42 per cent have access to treatment.

Many are diagnosed late when they may have already progressed to Aids. This makes treatment less effective, increasing the likelihood of transmitting HIV to others, and causing early death.

Kenya records 100,000 new HIV infections every year and one in every three of those cases are adolescents and young people.

Nairobi leads with the number of HIV positive adolescents at 49,904. Homa Bay comes second with 46,530 while Kisumu is third with 37,110.

CONCERNED: Regina Ombam of National Aids Control Council.

Regina Ombam, the head of development and policy at the council, says the country must reduce the number of adolescents and young people dying from Aids.

In 2014, 9,720 adolescents succumbed from complications, mostly because they could not  access treatment as a result of stigma.

“As a country, if we really want to make sure we get our people who are infected virally-suppressed, we have to walk them through that treatment cascade. But as long as we are not able to do that, then that viral load suppression is nothing but a myth,” Ombam says.

When one stops taking medication, opportunistic infections might occur, because of the weakened immune system.

Ombam says many adolescents were born with the virus, which means efforts to prevent mother to child transmission must be stepped up.

“One thing that pains in the HIV response is the number of children who are born with HIV. This is because with the knowledge and science that we have, those are people that we could have saved, had we gotten them early,” Ombam says.

There is also a group of adolescents who want to “discover themselves” at puberty stage simply because their parents or guardian never talked to them about sex.

“Parents claim that they are usually caught in a dilemma on the best time to talk their children about sex. This is where we have children becoming mothers while still children, while others end up getting the virus. We must create time to talk to our kids about sex.”

She notes that some adolescents may have been infected in sexual relationships with older people.

Bernard Omondi, who counsels adolescents and young people at LVCT in Nairobi, says disclosure is the main problem facing adolescents.

More than 80 per cent of them are afraid of telling their close friends about their status.

“It’s really hard because most adolescents and young people who started taking medicines since they were born were never told why they are taking them. Some were told that they are taking TB drugs while others were threatened not to skip taking medicines otherwise they would die,” he says.

Omondi says parents and guardians should disclose to their children their status at an age where they can understand. Threatening and lying to children to take medicines will not work as they will stop taking them once they find out the truth, he says.

He urges medical practitioners offering counseling to adolescents to attend to them carefully because they are not adults. Some adolescents and young people argue that they feel victimised by counsellors.

"Of utmost importance is that they should support them so that the country can achieve the viral suppression in all age groups and ensure that all those infected are on treatment," he says.

Charity had her own bed, beddings, plate cup and spoon. The utensils were also washed separately.
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