As the old adage goes, “a challenge shared is a problem solved”, more than 72 000 children, adolescents and young people living with HIV have come together to fight a common enemy — stigma and rejection.
Under the Africaid-Zvandiri initiative, the adolescents mostly born with HIV, who for years had been stigmatised due to their status, now have a friend to share their myriad of challenges.
Many of these challenges range from acceptability by both themselves and community that being HIV positive is just but a condition and not a death warrant and beyond.
They gather under a tree, a shed and at times in hospital corridors share on how to prolong their lives and avoid reinfection.
Zvandiri which means “As I am”, is an initiative that has become a shoulder to lean on and a fountain of hope, information for many HIV positive children and young people.
“When I grew up I was sickly most of the time, although I was taking medication, no-one had told me why I was taking it.
“I would miss school, then at one time while I was in Grade Seven I got sick and was bedridden. I continuously asked my parents what was really wrong with me.
“They seemed to struggle to tell me what was really wrong, my mother then started explaining that I had been born with HIV,” chronicled a 22-year-old in Banket, Mashonaland West, during a recent National Aids Council tour, who is a member of the Zvandiri’s Community Adolescents Treatment Supporter better known as CATS.
“I was so confused, when I was discharged, I refused to go home with my parents, and I had so many unanswered questions. Why me, what had I done to have HIV?
“I wanted to die and end this misery, I had been robbed of my childhood because of this sickness. I had no sense of belonging because my siblings were not sickly, I had no one really to talk to,” he added, recalling that the stigma he continued to face at school, in the community made his life difficult.
The 22-year-old says his life changed when he was introduced to other CATS at the age of 14, he remembers how excited he was to meet other young people he shared something in common with.
They were all united by HIV and rejection.
“For the first time, I got to engage with my peers who understood me. This platform created conversations, we shared challenges, fears and I got counselling from other young people who were born positive and now had the courage to face the word.
“This changed me, and my life has never been the same again,” he continued.
Several years on after joining CATS, he is determined to fight stigma, has the courage to hold other adolescents born with HIV’s hands, assuring them that it is well.
Charlene Mazia a 20-year-old from Mhangura in Mashonaland West shares the same story.
“At some point, I wanted to commit suicide, I got fed up of taking medication each day. I was just confused and kept on asking, why me.
“The stigma I faced at school and teasing by other pupils about having the ‘disease’ made life very difficult,” she recounts.
Charlene somehow blames her parents for taking long to disclose her status to her noting that this added on to her misery.
“While other pupils at school teased me saying I had the disease, when I asked my parents, they said I was taking medication because of the stomach problems I had. I only got to know my status when I was 16,” she added arguing that issues of disclosure were pertinent.
She vividly remembers when she was first introduced to the CATS, having a conversation for the first time with her peers she shared something in common with.
“I was introduced to the group just after the status disclosure. For the first time, I sat and talked to people who understood me.
“We shared challenges of stigma, our fears and this changed my approach to life. I also got to know of the importance of adherence, got strength to accept that I could not change being born with HIV.
“I’m glad that now I can hold the next person’s hand and assure them that it is going to be ok.”
These two’s lives mirrors that of over 70 000 children, adolescents and young people living with HIV who understand the Zvandiri programme have been united to by HIV.
“We work with 72 000 children, adolescents and young people from 0 to 24 years who are living with HIV.
“The goal of Zvandiri, is to improve children, adolescents and young people living with HIV (0-24 years)’s quality of life through reminding the world that these have physical, social and mental needs just like their peers who are HIV negative.
“Zvandiri aims to improve young people’s experience across the HIV cascade — HIV diagnosis, disclosure, linkages, adherence, retention — and to provide ongoing support for their mental health, social protection and sexual and reproductive health,” explains Zvandiri Communication Officer, Tinashe Rufurwadzo.
Incepted in 2004, the same year Zimbabwe first rolled out the national anti-retroviral treatment (ART) programme, Zvandiri has been working with the Government to implement and scale up its programmes across the country’s provinces.
“The multi-stakeholder approach has led to the success of Zvandiri. We work with the Ministry of Health and Child Care with health care workers having been trained to offer friendly services to children, adolescents and young people living with HIV. On the other hand the Labour and Social Welfare ministry has been supporting us through HIV sensitive case management and child protection issues with intense focus on children, adolescents living with HIV.
“Through the Ministry of Primary and Secondary Education teachers have been trained on HIV and Disability among children and adolescents living with HIV and also on how to have an enabling environment for children, adolescents and young people living with HIV,” he added.
Rufurwadzo admits that while a lot had been done to fight stigma, it was the greatest challenge this group continued to face in communities adding that timely status disclosure by parents and caregivers was pertinent among this group.
“In the communities which adolescents and young people live in are full of stigma and discrimination and with some people still having the mentality that HIV is only contracted through having unprotected sex.
“Some of these young people have never had sex but they are HIV positive, they were born with the virus.”
On status disclosure to this sensitive group which, given that some have contemplated suicide at some stage, Rufurwadzo believes partial disclosure at an early stage in children when they start showing signs of understanding circumstances in their lives was key.
“This also helps adolescents and young people to adhere well to their medication knowing that the medication is for a chronic illness.
“As an organisation we have interactive tools in place which are used by Community Adolescent Treatment Supporters to support caregivers with partial and full disclosure and those who are enrolled in our programme are given support in terms of knowledge and information on how they can cope with their HIV status and live happy, healthy, safe fulfilled lives.”
Since its inception, Zvandiri has scaled up paediatric and adolescent HIV services, culminating in approximately 80 percent of the estimated 72 887 children and 63 176 adolescents with HIV being initiated on ART by December 2017.
United by HIV, Zvandiri has not only created conversations among this group that shares myriad of challenges but the initiative has seen the group getting support differentiated according to the clinical and psychosocial circumstances of individual clients.