Meet the courageous teenage champions for HIV-positive youth

It is now 34 years since the first case of HIV was reported in Kenya, in 1984.

The disease shook this country to the core, and even as efforts to bring it under control rolled in, it was running a bit too fast for us – in 1999, President Daniel arap Moi declared HIV a national disaster.

Enter advances in research and today, in 2018, we are at a better place as a country in taming HIV: from the scare that it was about three decades ago to a manageable condition which, on many fronts, has been conquered.

This week, myNetwork re-looks at HIV mainly through the eyes of young people who were born with the virus and have overcome the challenges that accompany it and are living positively.

CELINE MBOYA, 19,

Joins Egerton University in January next year to study Commerce

Celine comes from a small village in Rachuonyo North sub-County in Homa Bay County.

When she was about to sit for her Kenya Certificate of Primary Education exams in 2013, she was tested for HIV after she fell ill. She would later learn that she was found to be positive but her mother and the clinician kept the news from her.

“I remember asking my mum why she did not allow me to extend evening prep like other candidates: I usually left school at 5.30pm, not 6pm like other students. She explained that since I had tuberculosis (TB), I had to go home early so that I could take my medicine in time,” says Celine.

Lack of full disclosure, she acknowledges, is a major contributing factor to low uptake of HIV antiretroviral treatment, counselling services, as well as enrolment in psychosocial support groups among young people.

“Full disclosure for me happened when I was 14 years, about to join secondary school. My mother took me to a hospital where a clinician explained to me that I was born positive. I felt like that was the end of my life. I was also very angry at my mother and even refused to eat for two days.”

Fortunately, Celine managed to overcome her despair, hopelessness and stigma to become a courageous and vocal adolescent champion for young people living with HIV/Aids.

Last year, after completing secondary school, Celine volunteered as an ambassador for change (adolescent lead) at Miriu Health Centre in Homa Bay County, the facility where she has been a client. She felt it was important to help fellow adolescents come to terms with their status.

For one to qualify for this role, one must have shown strong leadership skills, perform well in school, and have succeeded in suppressing the virus, a sign of strict adherence to treatment, says Dr Anne Mwangi, EGPAF’s project manager for Accelerating Children’s Care and Treatment (ACT) Adolescent Project. This project recruits and trains young people like Celine to become adolescent champions. The candidates must also be willing to disclose their HIV status to their peers and also have time to visit defaulters and do peer counselling at the facility.

For Celine, a typical day at Miriu Health Centre, where she is the Adolescent Lead, involves educating young people living with HIV on the importance of adherence to antiretroviral therapy and attending clinics. She often makes home visits to those who are defaulting.

“I urge young people living with HIV to find someone trustworthy to open up to, someone whose shoulder they can lean on,” Celine says.

Recent statistics show that new HIV infections among young people are on the rise. Celine lays the blame for this trend squarely on peer influence, observing that most young people are emulating their friends by engaging in early, and sometimes unprotected sex.

LYDIA ONYANGO, 22

Student, Kenya Medical Training College

Lydia was asthmatic, and was told that the medicine she was taking was to take care of the asthma. She got to learn that she was HIV-positive when she turned 10 years.

“I was in the company of my grandmother, who is my guardian, when the healthcare professional broke the news to me and slowly helped me make sense of what that meant,” explains Lydia.

At the time, her knowledge of what HIV meant was limited to the poems they sung in class about AIDS being a ‘killer’ disease.

“I was worried that I would die, but because my grandmother had always supported and encouraged me, it was quite easy for me to accept my condition. As a child, navigating the stigma was through just being quiet, but the more I understood my condition, the more I stopped worrying. Right now, my HIV status is not a secret,” Lydia says.

“HIV can be managed and one can live for long. The first step towards this is acceptance. Without accepting, one is likely to not take their medicine as required and even become rebellious. This is the point where some of these young people get into sexual relationships without disclosing their status to their partners,” she adds, saying that before getting into a relationship, it is important to get tested. Her medicine is a vital part of her health, which she often carries everywhere she goes – it is important that she takes them on time.

For Lydia, being HIV positive is a mental battle which she believes she has won, in fact, she and a couple of friends have created a group, Adolescent and Youth Peer Advisory Group, under Elizabeth Glaser Pediatric AIDS Foundation (EGPAF), that helps young people adhere to their medication and live a positive life.

“We are role models to other young people living with HIV,” she says.

CHALTON NGADI, 19,

Student at The Kisumu National Polytechnic

Chalton remembers running to his mother when he returned home from school to breastfeed. She would take him in her lap and breastfeed him until he was content.

“I was told that I suckled for six years,” he says.

In 2010 after a series of illnesses, Ngadi was diagnosed with HIV. He was 15 years.

At first, he was unwilling to accept his condition partly because it was not clear to him how he got the virus and partly because no one volunteered this information. He says that the most challenging thing about being young and HIV-positive is having to deal with stigma, not just from one’s peers, but within one’s community as well.

It was especially difficult for him while he was in high school because he had not disclosed his status and therefore did not want fellow students seeing him taking drugs. This meant that many times, he defaulted on taking his medication. He no longer hides his condition, and is relived that he no longer has to.

For the last two years, Ngadi has been part of a psychosocial support group (PSSGs), an initiative of Elizabeth Glaser Pediatric Aids Foundation, an NGO whose mission is to fight paediatric Aids. This forum has provided him with an avenue to share his experiences with other adolescents and open up to people who understand what he is going through without being judged, an experience he describes as therapeutic.

“I have learnt that it is not healthy to keep your positive HIV status to yourself, but before you’re confident enough to talk about it, you need someone to hold your hand, to support you.”

During his free time, he makes home visits to defaulting adolescents and shares his experiences with them, the aim to show them that being HIV-positive does not mean that their life has come to an end.

EMISH ONDIEK, 18,

Bachelor of Pharmacy student, Kenya Methodist University

Emish lost his mother to a HIV-related illness when he was only five months old. He lives with his step-mother and father in Nyamos Village, Homa Bay County.

Having been diagnosed with the disease in 2009 when he was nine years old, a case of mother-to-child transmission, it has taken concerted efforts from health care providers to get Emish to accept his status and commit to antiretroviral medicine.

He told myNetwork that owing to the myth then, that HIV is a death sentence, he found it difficult to accept his status when his dad broke the news.

“At first I thought he was joking because he was laughing as he said it and we were in the middle of a lunch date at Homa Bay town, but then I realised that my dad must have had a good reason to take me out and buy me my favourite meal,” he says.

He took the news badly, he, in fact, locked himself in the house for two days. At some point, he even contemplated suicide.

“Nothing had prepared me for such news,” Emish says

He just was not interested in any care, and asked his step-mother, who would take him to hospital whenever he fell sick, to let him die. He also worried about what his friends would say if they found out he was HIV positive. Even though he eventually agreed to be put on care, Emish didn’t adhere to the drugs. He would collect them from the hospital but would either not take them or would do so at irregular intervals. In 2013, a team from Got Kojowi Health Centre, where he had been put on care, comprising of the doctor in charge, a clinical officer and a peer educator, went looking for him. By then he was so frail, death was imminent.

“They sat me down, and after a long conversation, they told me that drugs were my only way out because If I didn’t take them, I would die.”

He chose to live.

“I am glad that I did not give up,” he says.

One of the biggest challenge for a young person living with HIV, he says, has got to be harnessing the courage to disclose their status to friends, which is critical in winning their support – it ensures that one does not have to hide to take medication. Also, juggling between schoolwork and managing one’s health is quite challenging. Often, he says, there is a clash of timelines between taking drugs and attending classes.

So how does he deal with these challenges?

“Concerning disclosure, I figured if I could be upfront with my friends, then I could go about my life normally. Also, though I am yet to directly reveal my HIV status on social media, I post information that arouses curiosity around HIV/AIDS. There are those who are curious enough to engage me, and when they do, I disclose my status to them. In most cases, they too disclose their status to me,” says Emish.

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These are the stumbling blocks we have to clear

Sylvia Wamugi of Y-ACT (Youth in Action), one of the fastest growing networks of youth advocates and youth advocacy organisations, notes that one of the reasons there is an upsurge in the number of HIV infection among young people (15-24 years) is that the age of sexual debut in Kenya is shockingly young, at an average of eight years. This is evident in the high number of teenage pregnancies in the country.

“Despite young women reporting high use of condoms during their first sexual encounter compared to young men, they abandon condom use with a partner whom they are not sure of their HIV status because of trust,” Sylvia notes, pointing out that investing in high quality youth-friendly centres in the counties and increasing access to condoms and accurate information is pivotal in taming new infections among young people.

“Committed leadership that is proactive in dealing with this endemic is also critical. Developing policies and allocating budgets for the provision of youth and adolescent sexual and reproductive health information and services will go a long way,” she notes.

Samuel O Ayaya, a Professor of Child Health Paediatrics and Dermatology in the Department of Child Health and Paediatrics at Moi University says that HIV infected adolescents suffer more disease (morbidity) and death (mortality) than adults. For example, in 2013, a report by WHO stated that mortality among adults had reduced by 30 percent whereas it had increased by 50 percent among the adolescents.

“By 2013 for example, HIV mortality among adults had gone down by 30 per cent, globally, however, in the same year, among adolescents, the numbers had gone up by 50 percent.”

He attributes this to the fact that there had been no specific focus on adolescent care and research until recently. Due to this, the process of disclosure (revealing the HIV status to the patient) is not adequately conducted among children and adolescents in the resource limited countries.

“Studies in West and East Africa place the disclosure rate at only 11 percent and 26 percent respectively, which means that about 75 percent of HIV positive young people do not know their status, even if they have been attending clinics since birth,” notes Prof Ayaya.

The main reasons for the low disclosure rates is cultural, and stigma among the parents/guardians and health care providers who are not trained on disclosure methods and hence feel inadequate to do so.

 “Most parents choose not to disclose the HIV status to their children because of the fear of stigma – children might tell other people and also because we live in a culture that still believes that children do not have the right to know such matters.”

The other major problem is that there is evidence that most health care providers in Africa do not follow the existing guidelines (due to lack of training) on the process of transitioning children and adolescents from Paediatric to Adult-focused care. They instead refer patients from the Paediatric to Adult clinics. This denies the patients the services recommended by the guidelines.

“The consequence of not following guidelines on disclosure and the transitioning processes is that when children discover their HIV status on their own, most become rebellious. Adherence to medication also suffers and further failing to receive adequate psychosocial counselling, sexuality and family planning counselling among other services during the transitioning process translates to high infection rates, morbidity and mortality,” notes Prof Ayaya.