“Photo Credit: Nell Freeman for International HIV/AIDS Alliance
By Esther Wamala
It is a sad fact that in rural areas of Uganda, people living with HIV cannot easily interact with other community members. A parent of an HIV positive child often has a hard time leaving him or her with a neighbour. If a neighbour agrees to stay with a child, the mother has to bring along a cup and a plate so that their child does not share eating utensils with the hosts’ children.
It is such stigma which forces some families to migrate to new communities where residents are not aware of their health status. This, in turn complicates matters, because such families usually migrate very far, to areas where they cannot easily access medication due to lack of transport.
Sometimes the families are so poor they even find it difficult to pay transport costs for the child to get to the hospital. This means young people can find it difficult to adhere to their HIV antiretroviral treatment, putting their health at risk.
“Mummy told me that I was born HIV positive when I was 13 years old,” Gertrude (now aged 16) tells me. She is seated beside her mother in a one-roomed house in Kawanda, where she sleeps with her younger brother.
According to Gertrude, her mother has to pay US$2 from Kawanda for transport to the Baylor Clinic at Mulago Hospital for her antiretroviral treatment. “Due to the prevailing poverty in our home, at times I miss out on my treatment. The medical staff cannot understand my plight and they just harass me, especially if my CD4 count has lowered,” Gertrude says with tears in her eyes.
Dropping out of education
Children who are orphaned by AIDS are often brought up by either their elder siblings or relatives. However, due to the increasing levels of poverty, such children are often forced to drop out of school, making it more difficult for them to gain the education and skills they need to support themselves.
Twenty-year-old Ruth* was born HIV positive in 1994. Throughout her childhood, Ruth was always on medication but she did not ask why, thinking that it was a normal routine in her life.
“At the age of 14, I was informed by a counsellor at the Baylor Children’s Clinic that I am HIV positive,” Ruth says. “The counselling I received at Baylor has helped me understand my situation. However at first it was not at all easy, because whenever I used to take the medicine, I felt like vomiting and could also get dizzy.”
Having lost both parents at the tender age of two, Ruth was brought up by her elder sister, Birungi, in Kiteezi, Wakiso District. She still lives with her sister, who struggles financially to support her. As a result, Ruth has had to abandon her education.
“Transport to the Baylor Children’s Clinic was already a huge burden to my sister,” says Ruth. “Birungi was only able to pay my school fees until senior two in 2012, when I dropped out of school. She later took me to Kawempe Youth Development Association (KYDA) so that I could gain skills in hair plaiting, but I did not even complete this due to lack of money.”
Gertrude also joined KYDA to study hair plaiting, after dropping out of school aged 15. Her mother hoped that the skills she learned would enable her to fend for herself. But she, too, had to give up the course due to the high cost of transport.
A vicious cycle
I believe this combination of stigma, poverty and lack of opportunities is creating a vicious cycle. Not only is it blighting the chances of girls like Gertrude and Ruth, but it is also putting the health of the next generation at risk.
Ruth is now seven months pregnant. “The doctors at Old Mulago Hospital have already advised me on how Nevirapine can be given to the baby to prevent HIV transmission. I hope I will give birth to a baby who is HIV negative,” Ruth says.
Birungi adds: “I am a single mother with three biological children to look after and I do not have a stable source of income. Due to Ruth’s idleness at home, she got engaged in sex at a young age and ended up pregnant.”
She tells me that if KYDA had permanent places of abode for its students, Ruth could currently be completing her studies at KYDA and her access to antiretroviral treatment at Mulago hospital would not be a problem.
Stigma and discrimination
According to Josephine Mutyaba, project officer of KYDA, the organisation does not have the funds to provide a place for its students to stay, although it does sometimes help them access treatment.
“Although the donor funding is strictly for vocational studies, at times we divert it to transport for our students to get their antiretroviral treatment at Mulago,” Mutyaba says. “However when we are financially crippled we have no solution, so they miss out.”
Mutyaba also said that although some parents at KYDA had asked for an official vehicle to transport their children to Baylor, it is not the best option due to the high levels of stigma. She says: “In our communities, once it is known that a particular family has an HIV patient, the other children can never be allowed to play or even share a meal with him or her.”
Due to the high levels of ignorance in Uganda, many people living with HIV do not want anyone to know about their status. To address this, the government urgently needs to invest more in educating the masses about HIV and in anti-stigma activities.
Access must improve
Paul Mayende, a spokesman for Baylor Uganda, says that ideally the patients and their care givers have to identify the means of getting to Baylor for treatment. “Since our organisation is donor-funded, we cannot meet all our clients’ needs, but there are some special cases to whom we give transport.”
Mayende also said that through their feedback mechanisms, they have identified some instances where counsellors are cited as being rude, but their investigations revealed that the patients do not take the medicine as directed by the physician.
He added that there is a possibility that patients miss antiretroviral treatment due to lack of transport and he promised to investigate if counsellors harass such patients.
Stigma and poverty are blighting the futures of adolescents living with HIV in Uganda, undermining our efforts to achieve an HIV-free generation. It will not be possible to achieve this goal unless the government invests more in fighting stigma and equips health centres which are easily accessible with all the required medical facilities. Young people must have reliable access to medication and be treated sensitively by health workers if they are to successfully remain on treatment.
Esther Wamala lives in Uganda and is a member of the Key Correspondents network which focuses on marginalised groups affected by HIV, to report the health and human rights stories that matter to them. The network is supported by the International HIV/AIDS Alliance.”