ART adherence headache in teenagers
25 October 2016
CHIDO from Penhalonga, Manicaland Province was born HIV positive 24-years-ago and she only got to know about her status when she was 14.
As she grew up, Chido was frail and because of sickness she was in and out of hospital. She was three grades behind her peers in school as a result of being constantly sick.
By the time she was 13, she began to wonder why she was always sick and had to carry a backpack with drugs to school while her elder sister and cousins only carried their lunch boxes.
Chido and her two sisters were left under their aunt’s care after both their parents succumbed to HIV when they were very young.
“I was always sick and I would wonder why me when my elder and younger sisters were fine. I would be given medication after meals and sometimes I would carry it to school.
“I had already started taking anti-retroviral therapy by that time although I didn’t know what the medication was for. All I knew was that I was very sick hence should take medication,” she says.
By the time she was 14, Chido says she started pestering her aunt about why she was taking the medication until the aunt told her that she was born HIV positive.
“It all didn’t make sense to me considering that my elder and YOUNGER sisters didn’t have the virus. I started convincing myself that it was a demon hence stopped taking the medication.
“For the one year that I had been on medication, my health had improved but the moment I stopped taking the tablets, my health deteriorated again.
“My aunt got worried after she realised that I had stopped taking my medication, she took me for counselling and it still did not work because I was finding it difficult to understand why I was the only one with the virus when my sisters were ok,” she chronicles.
A student at Mutare Girls High then, Chido says she also faced a lot of social stigma and too much sympathy because of her sickly body as people suspected that she had HIV.
“It was so bad for me even at school because its either the stigma was just too much or the sympathy I got from teachers made me realise that I was just not like the other pupils.”
She says her life changed when she met a group of other adolescents who were also born HIV positive and had accepted their status.
Chido says her turning point was when she was introduced to the Community Adolescents Treatment Supporters (CATS), an AFRICAID initiative of a group of young people trained to provide community based adherence monitoring and counselling for their HIV positive peers.
“For the first time in my life, I felt a serious sense of belonging. Meeting other teenagers with my condition, who had accepted what they were, was a wakeup call for me.
“They told me about the importance of adherence and how defaulting treatment could kill me. Most of them looked so well and were not sickly like me and they said their secret was adherence to treatment.
“They became more like family to me and this was the best counselling that I had ever received in my life. In 2008, I started taking my medication again and I joined CATS. My life changed for the better and even my health improved,” she adds.
Chido says the best people to counsel young people born with HIV were their peers in the same situation: “That is the best gift you can ever give to a teenager who is struggling to accept her status.
“I got my first counselling from a woman who is HIV positive and during counselling she would remind me how she has been living with the virus for years, and I was still in denial because I would say she had acquired the virus on her own while it had been passed on to me by my parents.
“For years I was in denial until I met the CATS, my life has never been the same again,” she adds.
Another 19-year-old orphan from Mutare who was born with HIV says he struggled with adherence after he accidentally found out about his status.
“I had been on medication for a very long time while nobody had ever told me what the medication was for. By the time I turned 16, I accidentally found out that I was HIV positive and I was very bitter and stopped taking medication.
“I asked my uncle why they had kept this a secret from me and I was very angry with the whole family for not telling me. For a year I did not take my medication and at one time I wanted to commit suicide.
“My life changed when I met the CATS who counselled me until I started taking my medication again,” says the teenager.
The boy also gave a testimony of how two of his friends who were born with HIV died after they stopped taking treatment.
The two- young people’s lives mirror those of other adolescents and young people who were born with HIV who have struggled with disclosure and adherence issues.
Through the support of the Ministry of Health and Child Care, AFRICAID has supported CATS to provide community-based adherence monitoring and counselling for their positive peers.
While ART adherence has improved in the country, Zimbabwe Network of People Living with HIV, Manicaland programmes coordinator, Lloyd Dembure said it remained a very huge challenge in young people and could be attributing to the rising HIV deaths in adolescents.
Dembure says there was need for concerted efforts from all sectors to tackle issues of adherence in young people between 15-19 years arguing that these had potential to derail all the gains achieved in HIV management in the past decades.
He says adolescents cited issues of late or accidental disclosure as some of the challenges they faced as they came to terms with the HIV positive status.
“Anti-retroviral therapy (ART) in adolescents remains a challenge as the default case rate remains really high. Issues of late disclosure by guardians or parents have greatly contributed to non-adherence as most adolescents become rebellious the moment they get to know about their HIV status.
“Accidental disclosures are also a major challenge; this is when a young person born with HIV accidentally gets to know that the medication she or he has been taking all her life is because of their HIV status. We urge guardians to disclose HIV status to these young people as they grow,” he said.
Dembure said status disclosure could be done at different stages as the young person grows and it should be age appropriate: “The guardians can start by partial disclosure from the age of 6-years and when the child is old enough to understand depending with maturity, they can then do full disclosure.
“The issue of disclosure is the major reason why we have adherence challenges and the nation has to address this so that we don’t continue to lose these young people who were born with the virus.”
Head of the AIDS and TB Unit in the Ministry of Health and Child Care, Dr Owen Mugurungi concurs that there is need for a multi-sectoral approach to ensure that young people especially those born with HIV stay on treatment.
“Yes we have a challenge of adherence in young people and this could be highly contributing to the rising adolescent deaths. The issue is also that those who die with HIV don’t even know that they have HIV.
“Parents are afraid of getting their children tested in fear of getting to know their own status in the process.
“Issues of late disclosure are also a challenge as most of these young people become very rebellious the moment they get to know their status.”
Dr Mugurungi says the country was losing more adolescents who were born with HIV due to various reasons.
“This group has potential to reverse all the gains that have been made in HIV because we are losing them. There are so many challenges that have led to their deaths and there is need for more research and interventions to ensure that they don’t continue to die.
“The greatest challenge is ensuring that they adhere to treatment, this is a very rebellious group that would prefer to die than take medication,” the official said.
According to UNICEF report, the number of adolescent deaths from HIV has tripled over the last 15 years.
HIV is reportedly the number one cause of death among adolescents in Africa and the second leading cause of death among adolescents globally.
Among HIV-affected populations, adolescents are the only group for which the mortality figures are not decreasing.
The new data from UNICEF states that most adolescents who die of AIDS-related illnesses acquired HIV when they were infants, 10 to 15 years ago, when fewer pregnant women and mothers living with HIV received antiretroviral medicines to prevent HIV transmission from mother to child.
These children have lived to their teenage years, sometimes without knowing their HIV status.