It is now 31 years since the first World AIDS Day was commemorated in 1988 at the height of the AIDS pandemic.
The Day was calculated to create awareness around HIV and AIDS, promote potential cures and remember the lives lost to the disease.
But while 23-year-old Neo Ntaote is happy with the way antiretroviral (ARV) drugs have changed the lives of people infected with HIV/AIDS for the better, he however, says those with the infection still suffer discrimination in many spheres of society.
Ntaote, popularly known by his peers as ‘Hashtag’, is vice-chair-mate of Paki Health Centre Peer Group comprising approximately 30 youths between the ages of 18 and 23 years. He told the MNN Centre for Investigative Journalism (Centre) in an interview that there is a cyclical relationship between stigma and HIV fuelled by myths and misinformation, but was also happy that being infected with the virus “is no longer a death sentence, thanks to ARVs, but the stigma remains”.
According to Ntaote, one of the myths and misrepresentation is that HIV/AIDS is witchcraft, which he said increased the stigma.
He added the discrimination comes from many quarters, including one’s own family, citing himself as an example.
Narrating how he found out about his HIV-status and the discrimination he received from his own family as a result, Ntaote said he was only 12 years of age when he tested positive for the virus.
“My father used to work in the mines and he died when I was only two years old. After my father’s death, my mother, who is very sick now, left me and my three elder siblings for South Africa. I did not know anything about HIV then but I assume that I was infected by my parents. My father’s immediate brothers shared the responsibility of raising my siblings but I was raised by my grandfather who was based in Maseru. From the age of two, I was separated from my siblings and even today, we still don’t have any bond; we totally do not have a relationship as siblings,” Ntaote said.
“In 2008, when I was in Class 6, I was 12 years old and had never engaged in any sexual activities. I want you to understand that in 2008, I was not sexually active at all and from my childhood history, I have not heard anything about being involved in a car accident and having blood transfusion which might have been contaminated with the virus. I tested positive from the nurses who visited my primary school.”
Ntaote said going back home to face his grandfather and grandmother about his HIV status did not worry him because he did not know anything about the virus.
With a sad look on his face, Ntaote explained that he went home with a hospital referral letter from the nurses who tested him and was advised to share it with his parents so he could be medically assisted.
“Getting home to my grandmother was a blessing because she is a nurse by profession, so I believed she was going to be the best person to discuss my status and my medical needs going forward. But least did I know that it would be the beginning of my discrimination and humiliation,” Ntaote said.
Ntaote described what happened after disclosing his status to his grandmother as “the nastiest thing ever” because he says she advised him to ignore the matter and live as if he had no virus.
“She did not help me go to any health centre with my referral letter, which came as the first blow to me. Instead, I was bought my own utensils to use for eating and never again used the same soap as everyone else like I had done before. This showed that my status had made me isolated from the rest of the family members.”
Ntaote further described the “second blow” as the decision by his grandmother to take him to a Pentecostal church priest who prayed for him and declared that he had been healed.
“From the Pentecostal priest, my grandmother told me to live without any fear because I was healed, but the discriminative treatment never stopped. Things became worse when my grandfather died in 2010. I was even told time and again that my real home was in Matelile, and not where we stayed in Khubetsoana,” said Ntaote.
Ntaote added despite the tough life at his grandfather’s home in Khubetsoana, he managed to complete his high school education and then went back to Mafeteng to stay with his father’s sister.
“My elder sister passed away; I am now left with my two elder sister and brother with whom we do not have a close relationship. My mother came back from South Africa very sick in 2017 and I do not have any relationship with her as well. My aunt is my pillar of strength; she is now my only hope because she is the one who motivates me to research more about HIV. She is the one who financially supports my monthly visits to the health centre for my ARV-treatment and attendance at the peer group sessions sponsored by EGPAF.”
Ntaote added he was grateful to be part of the Paki Centre Peer Group because of the support they give each other as members.
“It is with the advice and knowledge-sharing which I gain from these meetings that I am able to face all HIV-related challenges I encounter every day. My peers here helped me so much to endure the pain from my family’s discrimination and move on.”
The United Nations General Assembly 86th meeting of 3 June 2019 noted that over 15 million people in the world are living with HIV and are unable to access treatment due to shame and stigma.
Speaking on behalf of the Southern African Development Community (SADC) in the same meeting, a South African representative, Xolisa Mabhongo, said on the UN’s official website that the southern African region bears the world’s greatest HIV/AIDS burden.
According to Mabhongo, since 2016, testing in Botswana, Eswatini and Namibia has nearly reached or surpassed 90-percent, while treatment in Lesotho, Malawi and South Africa has also recorded gains as they strive to reach their 90-90-90 targets.
With the help of Global Fund, SADC has set up cross-border clinics for truck drivers, domestic workers, miners, and scholars to be tested, and receive treatment and information about preventative measures.
Adopting a human rights approach to HIV and AIDS is in the best interests of public health and key to eradicating stigma and discrimination, thereby ensuring the complete eradication of the disease.