Apart from talking about his biological father abandoning him at the age of 12 for being HIV positive, Mahad Sekiziyivu, keeps smiling as he shares with me secret braving HIV stigma.
The 19-year-old medical laboratory student at Lubaga Hospital in Kampala never bows to HIV stigma, which many HIV victims have succumbed to. In the worst case scenario, some stop taking their medication in what is termed as “lost follow up’ cases.
Although living with HIV can be distressing, Sekiziyivu says stigma against a person living with HIV can be more worrying than the disease itself. “The society’s perceptions towards people living with HIV deeply affects us emotionally and takes a huge toll on our health. Because of this, I choose to keep an open mind and not let negative comments bring me down, says Sekiziyivu.
He adds: “The worst kind of stigma I have faced is when my biological father abandoned me at the age 12, shortly after my mother’s death. He thought I was going to die anyway and thus of no value to him. This rejection has affected me to this day because this is the time I needed him the most!”
However, with the inspiration and testimonies he got from people at The AIDS Support Organisation (TASO) Centre Masaka, who have lived with the virus for more than 20 years, Sekiziyuvu says his perception about HIV changed positively.
“The stories of the people I met at TASO, where I also receive treatment gave me a lot of hope and raised my esteem. I started believing that despite being HIV positive, one can live a normal life.
He also owes great appreciation to his counsellors, Agnes Nakimbugwe, the manger TASO Masaka and Edward Muwanga, for psychosocial support which, he says, is driving him to succeed.
“Although my father abandoned me thinking that I would die soon anyway, it gives me courage to find people at the laboratory waiting to be attended to. This means I am useful to society, Sekiziyivu says.”
He adds that through Wellsprings Children’s Medical Centre, an organisation at Kamutuuza, in Mukungwe Sub-county, Masaka District, he is able to encourage other people living positively to believe that they can also make a difference. The organisation, he says, is also sponsoring his education
“I realised that the magic is in first dealing with self-stigma (internal stigma) before confronting external stigma. “For example, nothing can stop me from taking my ARVs even in the presence of other students,” he says.
Ssekiziyivu says those who stimatise people living with HIV are insensitive and do this out of ignorance. He adds that everyone should know that no one is immune to the disease and all one needs is support.
Despite the Global scale up of antiretroviral therapy, and the massive effort to sensitise the public about AIDS, the context of HIV-related stigma seems stagnant. Society is yet to fully support people living with the virus, which makes it a thorn in the fight against the endemic
Stigma can be external or internal. External stigma involves comments from the public, and the attitude they develop towards people living with HIV while internal or self-stigma has to do with the person living with the disease.
The first ever stigma index survey conducted in 2014 by National Forum of People Living with HIV/Aids( NAFOPHANU) reveals that 75 per cent of People living with HIV and AIDS experience stigma at family level and 60 per cent are aware of being gossiped about, a fact that greatly affects their self-esteem and general wellbeing.
The survey further reveals that 36 per cent of People living with HIV and AIDS are verbally insulted, harassed, or threatened.
It further states that one in five of People living with HIV and AIDS are subjected to psychological pressure or manipulation by their spouses, 21 per cent experience sexual rejection by their spouses, 23 per cent loose jobs because of their HIV status and 15 per cent are assaulted based on their HIV status.
The report also states that three out of four HIV positive persons whose rights were violated did not take up legal action for fear of stigma and of those who reported only 40 per cent received legal redress.
How stigma derails the fight against HIV/AIDS
According to Livingstone Musoke, the adherence officer of Kalangala Comprehensive Public Health, a community group in Kalangala District that cares for people living with HIV, stigma has discouraged many people from taking the HIV test, sharing results and complying with treatment because of discrimination, fear of rejection and violence.
This is true even when they are aware of the advantages of early detection and the need to take drugs regularly and consistently. “Many mothers have, because of stigma, failed to disclose their HIV status to their husbands and this derails the effort to prevent mother to child transmission, an implication that more children will be born with the virus,” Musoke notes.
He adds that many HIV patients have stopped taking their medication because of the fear to be identified.
Suzan Nalule, 23, who was born with HIV, attests that because of stigma, she at one time stopped taking medication for about six months.
“My workmates saw a friend going for ARVs and made her the topic of discussion at work. I realised that once they discover my status, they would do the same to me. I cose to stop taking the drugs,” she narrates.
Later, she says, she started feeling weak but the thought of living her young children without a mother brought her back to reality.
Musoke warns that such inconsistency and poor adherence is causing second line drug resistance among many patients, as well as causing other health complications such as developing meningitis, tuberculosis and herpes zoster.
To arrest the issue of stigma, Musoke says the Ministry of health has to employ real counsellors at health facilities and not to rely on those employed by Non-government organisations.
Because of the increasing number of adolescents living with HIV, Musoke recommends that there is a need to have trained counsellors to specifically handle children. He says the approach used while counselling adults is different which he says creates gaps leading to many adolescents failing to dislodge stigma and end suffering its sour fate.