Teenagers narrate brush with HIV and fight against stigma

“You are HIV-positive!” This response undoubtedly sends shivers down the spines of many people.

But for Sarah and Gune (not their real names), who are living with the virus, this reply once rang in their ears when they learnt their fate and had to pick up their pieces.

They were once bitter at themselves. But today, they lead a positive life and represent the few in society who are encouraging others to overcome their fears after infection.

“You may feel terrified, sad, or even furious, but this is normal and healthy when dealing with a situation that has the potential to change your life,” says Sarah.

According to Sarah and her friend Gune,  having HIV does not slam breaks on one’s life and prevent them from achieving their goals.

“It is feasible to live as long as the typical person with the correct therapy and support.”

Sarah said when she was an infant, her mother used to call her aside and give her some drugs, but she did not know what they were for.

How it happened                                                 

Sarah reveals she was born with a virus in a sorry situation where mothers pass on the virus to their babies when not in medical care. Shortly after her birth, her father died, leaving her under the sole care of her mother.

“Usually every evening, my mother would call me and give me some medicine,” Sarah says, as she recalls the moments she started taking antiretroviral drugs.

“Then one evening, I asked her, “Mummy, why did you give me this medicine and not to my elder brother?” If you don’t want to tell [me], I don’t want to take it either, “she recalls asking her mother.

“My mother started crying and then she told my aunt, who works at Juba Teaching Hospital, to take me to her home and later revealed that I needed to take that medicine to live longer.”

But that support and care that Sarah received as a seven-year-old are what transformed her into a vibrant teenager, confident about her status and not ashamed to share her story.

“I didn’t feel bad about finding out that I was HIV positive because it was not my crime and it’s not my fault,” she said. “I know I have to take my medicine whether my mum is around or not,” she adds.

Sarah says the stigma associated with HIV makes it difficult for many people to speak out about their status.

At school, she has been lucky to find pupils who are appreciative and non-discriminative.

“I live a free life, I even tell my friends and they advise me to take my drugs and not to worry.”

However, that does not mean that she has not experienced any form of discrimination in the community. She advises that it is important for everyone to know their status before they point a finger at her.

“If you think you are not HIV positive and you want to talk to me, I will say you are welcome to talk. It is good enough that I know my HIV status. What about you?”

Gune, 17, had no idea about the disease called HIV/AIDs but only learnt about it when she was eight years old.

Gune says she got curious when she learned about it when she realised her brothers and sister were not seen frequently taking drugs as she did.

“Not until I asked my mother why she is always given drugs every day and how come that the sickness her mother was treating could not be cured,” Gune says.

“I was not happy because my mother could give me medicine every day. I decided one day to find out why, and mum explained and told me how I am HIV positive. I took it easy because I understood her.”

Unlike Sarah, who has had a softer ride, Gune says she is being discriminated against by some of her family members and relatives.

 She narrates that one day she was taken to her aunt’s family home, and she was not allowed to eat together with other children, and when visitors came, she was locked in the house until they left.

The two girls represent the few lucky South Sudanese who are able to access the ARVs; the majority are disadvantaged.

 Access to ARV remains low in South Sudan

Despite the progress made in the national targets for prevention, testing and treatment remain matters of concern for the government.

“We are not on track to reach the global HIV/AIDS target of 90, 90, 90 and some people are already talking of 95.95 and the treatment is still at 23 per cent,’’ said Dr Estherina Novello, the chairperson of the South Sudan Aids Commission.

In 2018, only 24 per cent of those living with HIV were aware of their status, and only 16 per cent were on treatment, considerably below the UNAIDS 90-90-90 targets.

 “We need to do a lot,” Novello said. “Our partners, UN agencies, the government will not end HIV in this country without your support, and this is the time we need to invest in HIV so that we realize the global goal of ending HIV.’’

Recommits to fight to end HIV

Speaking at the occasion to mark World Aids Day in Juba, at Nyakuron Cultural Centre on Wednesday, Estherina Novello announced South Sudan’s recommitment to the global fight to end HIV and AIDS.

“Today we join millions of people around the world to recommit to the global fight to end AIDS as a public health threat, as well as to reflect upon our national response to HIV and the AIDS epidemic.”

The global theme for World Aids Day 2021, is “End inequalities.”

Estherina said ending inequalities requires addressing health inequalities and ensuring that the voices of people with HIV and AIDS are central to the work of the government.

She emphasised the importance of removing stigma and discrimination, which she claims are major barriers to accessing services, leaving HIV patients vulnerable to new infections.