HIV-infected children struggle with stigma

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It has been days since five-year-old Tatenda from Highfield has been sick and he misses his mates at a local pre-school down the road. He does not understand why he cannot go to school now that he is feeling better.

It has been days since five-year-old Tatenda from Highfield has been sick and he misses his mates at a local pre-school down the road. He does not understand why he cannot go to school now that he is feeling better.

BY PHYLLIS MBANJE

“He was diagnosed with TB and we also learnt that he is HIV-positive, just like me and my late husband,” said his mother Monalisa.

His emaciated frame makes him look half his age. Throughout the interview, held inside the squalid room which serves as a kitchen, bedroom and lounge, he gazes curiously at me and when offered a lollipop his large brown eyes light up.

Tatenda looks at his mother for approval and when she nods her head, a skinny hand grabs for the sweet and with all the enthusiasm of a boy his age he quickly unwraps it and pops it into his mouth.

“I always had a suspicion that something was wrong with my child right from the early days when he was born,” says Monalisa whose husband died when she was still pregnant.

“I only knew about his status when I was going through his stuff after his burial. Apparently he had been tested a couple of years before I even met him and he had once been treated for TB,” her voice cracks as she grapples with emotions.

Tatenda was born weighing a mere 2,1kg and had to be hospitalised until he had gained a bit of weight.

“He was such a tiny baby and was always crying. I was never tested for HIV when I was pregnant. My husband always used to say we were both healthy and there was no need for testing. I didn’t want any trouble,” she said.

Tatenda is now taking antiretroviral drugs under the government-sponsored programme and seems to be responding well to treatment. His mother, like thousands of other women in Zimbabwe, delayed seeking treatment for fear of being stigmatised and isolated in her community.

“Not only was I afraid of the results but also my relatives and friends. I delayed a bit in seeking treatment and I changed clinics so that they would not ask me a lot of questions,” she says with regret written all over her face.

She still has not disclosed to her close relatives but plans to do so in the future.

According to the UNAids estimates for 2012, 180 000 children from birth to age 14 have the virus in Zimbabwe but access to treatment is still a huge challenge. Frantic efforts are being made to scale up decentralisation of paediatric services and make them more accessible to every community.

Although new HIV infections in children up to 15 years of age have been declining due to aggressive campaigns on prevention of mother to child transmission, it was too late for the majority of these born earlier.

Last year the Health ministry released shocking statistics that over 50 000 children below the age of 14 were failing to access life-saving HIV drugs.

The National Prevention of Mother to Child Transmission of HIV (PMTCT) and Paediatrics co-coordinator in the Ministry of Health and Child Care Angela Mushavi, said it was a “societal challenge” to ensure the children are tested and get treatment, which is free. She said parents were not taking their children for testing, denying them the opportunity to get the lifesaving drugs.

Funding constraints and limited facilities to treat children was also another major challenge which was hampering the programme.

Adolescents who are HIV-positive have not been spared either, especially those who were born with the virus. Adjusting to fit in the society that is not yet ready to acknowledge their existence has isolated this group.

Twenty-two-year-old Barnabas from Budiriro 1 was born to an HIV-positive mother who died when he was only three years old. “He was such a sickly child I dare not tell you how many times I have been to the clinic, but I loved him so much I didn’t mind,” said his grandmother Alice who has raised him and looked after him.

She recalls a time when his whole skin peeled off and his teacher refused to have him in her class.

“That affected him when he was discriminated for being sick. It broke my heart when he came home with tears streaming down his cheeks. He asked me if gogo when will I stop being sick and when do I stop taking these tablets’,” Alice says in an anguished voice. Soft-spoken Barnabas takes over from his grandmother and explains the dark moments.

“All I wanted was to be well and join in the fun with my friends but my sickness prevented me from that. I was angry and distraught but my grandmother encouraged me. She said your medication is like sadza, you never say I have had enough of it. Do the same with your medication.”

He took her advice, but while attending service at one of the Pentecostal churches he was told by the man of the cloth that he had been healed and he stopped taking his medication.

“I was very angry when I was told that Barnabas had stopped taking his medication,” said Siphiwe Chabikwa, a coordinator from the ZNNP+ in charge of Budiriro and Glenview.

After a lot of counselling he went back on treatment but because he had defaulted he developed resistance and had to be put on the second line treatment which is more aggressive than the first line.

“I stopped taking my meds in May last year and only resumed in December. It is not right what these preachers do to us. They make you believe that you have been healed and because you want to be healthy, you believe them,’ he shakes his head with regret. Now his fate hangs on the balance because after the second line his options are very limited.