In Summary

The concern. Despite the deadly disease being mostly sexually transmitted, many children have continued to be discriminated by society, while others have to contend with taking bitter ARVs for the rest of the lives, writes Lilian Namagembe.

The decline. Uganda, whose experience had inspired many countries, registered a sharp rise in prevalence from 6.4 per cent in 2005 to 7.3 per cent in 2011, an indication that an epidemic can rebound if the foot is taken off the pedal. The Uganda Demographic and Health Survey 2016 indicates that 60 per cent of the men in Uganda had tested to know their HIV status compared to 83 per cent of the women. The survey adds that 52 per cent of men are currently on antiretroviral treatment therapy.

Standing in front of a bushy garden on a cold windy morning, days after her mother’s burial, a pale girl with a swollen abdomen is handed to one of the distant paternal aunties. The year is 1995.
The mother of then two-year-old Sylvia Nalukwago had just succumbed to HIV/Aids, a century after the disease was discovered on the shores of Lake Victoria in Rakai District.

HIV/Aids, which at the time had no cure, had destroyed many families, living only orphans at the mercy of caretakers while many became young family heads.
The same dark cloud hovered over Nalukwago’s family and when time came for other relatives to disperse, the second born together with her elder brother were handed over to different caretakers.
“My father was a plumber until he died this year [2017] in January. He was equally weak and could not provide for us,” Nalukwago, now 24 years old, narrates.

Almost 100km away from a small rural village in the central district, the two were brought to Kamwokya, the city suburb, where prostitution and brewing alcohol were the major economic activities.
A few years after she had joined school, Nalukwago would hear her would-be comforters saying she and her brother were also ‘sick’ because their mother had succumbed to HIV/Aids. Her cousins at home also could not share with them utensils such as cups, plates and some foods because she had persistent rushes, cough and diarrhoea that they thought were contagious.

“One day, it was my birthday and I cut a cake into 10 pieces to share with the other children at home but they all rejected it, saying that I had scratched myself before touching the cake. They said they feared to catch Aids,” she recollects.
It was such insults that forced Nalukwago to take a bold step at the age of 13 in 2008 to carry out an HIV test and her suspicions were confirmed when tested positive. However, her elder brother tested negative.
The stigma even continued in school and it climaxed in Senior Five when she was expelled because she refused to be used as a case study during lessons on HIV/Aids.

Nalukwago’s misery is typical of what children born with HIV go through; braving stigma from both their families and communities, knowing that they will never live a normal life like their age mates.
The children are victimised for acquiring a killer sexually transmitted disease from their mothers; a thing they have no control over and neither are they responsible.

As Uganda marks the World Aids Day today under the theme; “Increasing Impact through Transparency, Accountability and Partnerships”, it is important to note that 95,000 children in the country are living with the disease.
In Uganda, 15 years is the cut-off for those considered as children living with HIV/Aids. Of those affected, 64,647 are currently enrolled on antiretroviral therapy (ART) as of 2016, according to the Ministry of Health statistics.

In order to prevent children from the deadly disease and the subsequent agony, the Ministry of Health and development partners has since enrolled the prevention of mother-to-child transmission (PMTCT) programme.
It is being implemented in four different pillars, including the prevention of transmission of HIV in adults, providing family planning, use of life long treatment of antiretroviral drugs and access to treatment.
Under the same programme, pregnant women receive ARVs during pregnancy and during the first six months of exclusive breast feeding to suppress the viral load in their blood.

Children born to HIV positive mothers are also put on pre-exposure prophylaxis, a daily course of nevirapine syrup.
Although the programme has been implemented in Uganda for the last 15 years, 4,000 children are still born with the disease annually. The number has, however, reduced from 28,000 in 2008, owing to PMTCT
Dr Joshua Musinguzi, the programme manager of the Aids Control Programme in the Ministry of Health, attributes the persistent high number of HIV positive children to mothers who do not honour appointments during antenatal care and even use untrained traditional birth attendants during delivery despite the continuous sensitisation by government.

“Mothers also don’t bring back their babies and hide drugs, especially when it is one partner who is HIV positive, which affects their adherence to drugs and end up infecting the children both during and after birth,” Dr Musinguzi explains.
With such poor adherence behaviour, children who acquire the disease from their mothers are usually enrolled on full doses of ARVs, which they have to take for the rest of their lives.

The psychological torture that children get from the unexplained couple of daily bitter tablets is even worsened by their realisation that they are paying the price for acquiring the disease from their infected mothers. Cissy Mirembe (not real names), 30, who is living with HIV, is disheartened by her three-year-old son’s hatred for the bitter pills he has to take twice every day.

Children take varying quantities of ARV drugs contained in a particular tablet depending on their weight.
Therefore, because sometimes the health facilities where caretakers access drugs may not have ARV tablets measuring up to the required milligrams, some children end up taking more than one tablet a day.

Psychological torture
“He knows the bag where I keep the medicine that even when I am picking something else from there, he becomes terrified and asks; ‘mother are you going to give me medicine?” a tearful Mirembe laments.
Because she crushes the tablets in water to make it easy for the child to take, she says her son now hates spoons “because they revoke his memories of the bitter tablets.”

Unlike most adults who can fend for themselves, Mr David Kavuma, a psychologist at Mild May Uganda, a non-governmental organisation which offers specialised HIV/Aids treatment, says children are most affected by the disease because they lack a voice. He adds that they are more vulnerable to poverty due to death or reduced productivity of their parents.
“Where there is poverty, there is no good feeding because not all caretakers can afford a balanced diet, which weakens their immunity even further and compromises their ability to adhere to drugs [since they can’t imagine swallowing drugs on an empty stomach],” Mr Kavuma says.

He also notes that most health workers also do not know how to handle and communicate to children properly to convince them to take the drugs, and most especially adolescents, which makes many to abandon them.
Most hospitals in the country also do not have child-friendly corners to handle children in a more appealing way to ensure they return next time, and Mr Musinguzi admits that there are actually a few general and regional referral hospitals with such services at the moment.

It is such challenges that makes many children develop resistance to ARVs and have to be switched to several other types of drugs, some of which are very expensive.
Other regimens such as those taken by children who fail on the first and the second categories of ARVs and have to be put on line three categories, which are not currently provided by government, require a caregiver to part with between Shs700,000 and Shs1million per child every month. As a result, many children who cannot afford are kept on the resistant drugs and subsequently die.
It is because of such challenges that Nalukwago at some point in 2013 was forced to suspend taking ARVs because the school matron in whom she had confided her status disclosed it to the rest of the students.

Besides, in one of the conversations at an event organised by the Ireland Embassy in Uganda ahead of the World Aids Day, one of female adolescents living with the disease narrated another his colleague who has been admitted after developing a mental health problem.

“That must be effavirenz [an ARV drug]. That is what happens when you pray around with that drug [poor adherence]. Several friends of mine on the same drug have reported the same cases and admitted to Butabika [mental hospital],” another male adolescent said.
Effavirenz is a type of ARV given to adults and children above three years old.
Dr Stephen Watiti, a specialist in HIV/Aids treatment, confirms the claims by the adolescents that effavirenz indeed causes side effects in children such as hallucinations, downiness and depression and as that some countries have since withdrawn it from the market.

Another adolescent, Huzairu Nyanzi, 21, revealed that he was even abandoned by his biological further on testing positive and he has since found a new family at a local non-governmnet organisation, which has since adopted him.
Nevertheless, many children like Nalukwago have managed to console themselves and forge their way to a better life. The 24-year-old is currently married to an HIV negative husband.

Nalukwago also works as a peer mother at Kamwokya Christian Community, a non -governmental organisation in Kampala, which works to mitigate the psychosocial and economic impact of HIV/Aids on the community.
Using her own experience, she talks to expectant mothers on the best practices of protecting their unborn babies from acquiring the disease.