New Vision (Kampala) - November 13, 2007
Irene Nabusoba

"I was tired of everything; the queues at hospitals, accessing drugs at the pharmacy and the sight of my little girl choking on medicine was devastating. It was evident she was tired of the lifelong treatment," she narrates.

Then came this one Sunday. "The pastor announced that there was going to be a special healing service for people with HIV/AIDS. The only prerequisite was faith. I had this in abundance. I devoted my all to prayer and fasting for miracle healing, especially for my daughter," she recounts.

But nothing changed. Instead, the duo got weaker each day that passed, to which the man of God emphasised faith and patience.

"He said if you seek God, you do so wholeheartedly. You do not mix prayer with other interventions like witchcraft and science. After about nine months, I decided to go back to hospital, but my girl did not make it. She died two weeks later. I now regret and feel guilty," Mega says with regret.

Dr Adeodata Kekitiinwa, the director of the HIV/AIDS Paediatric Clinic at Mulago Hospital, says the issue of pastors promising good health is adversely affecting their efforts in managing the scourge, with many mothers abandoning medication for 'miracle healing'.

"We have one notorious church in the neighbourhood. Mothers are often running there for healing only to come back when the children are badly off. There are so many churches out there promising miracle healing and people resort to them, only to come when it is too late," Kekitiinwa says.

She says the challenges of managing HIV/AIDS in children wear down many parents and caretakers, driving them to search for 'quick' solutions.

"First, there is that guilt mothers carry for infecting their children. About 95% of the cases here are mother-to-child transmission. Knowing the pain AIDS inflicts, mothers are desperate.

They will do anything to spare their young ones the suffering," she adds.

Growth of the clinic

Mulago's Paediatric HIV/AIDS Clinic, which started in 1988 as a paediatric infectious diseases ward handles about 170 children daily.

"The ward was meant to care for children with all kinds of infectious diseases, but we realised that mixing HIV/AIDS with other diseases was undermining the fight against the scourge," says Eliphaz Ssekabira, the hospital's public relations officer.

"The clinic had minimal support then and managing HIV in children was a big challenge. In 2002, the Centre for Disease Control (CDC) realised that paediatric HIV could be supported if only it were mainstreamed. They refurbished the clinic, which has housed the children since July 2003," Ssekabira adds.

The clinic now strictly handles HIV/AIDS in children. There is an acute care unit to handle the other infectious diseases.

The clinic has grown from 700 children with less than 10% on antiretroviral therapy (ART) in 2004, to 5,000 with 2,000 on ART today.

"The good news is, whichever child needs ART can now access it," Kekitiinwa says.

"Through CDC, we entered a partnership with the Baylor College of Medicine Children's Foundation-Uganda who constructed a $2.5m facility," Kekitiinwa, who is also the executive director of Baylor College of Medicine Children's Foundation-Uganda, adds.

Clinic with many challenges

There are still challenges of identifying and referring HIV infected children for proper treatment.

"The community does not recognise these children for early treatment since many mothers do not attend antenatal care, seek voluntary counselling and testing or deliver in hospitals," she says.

Kekitiinwa says only about 40% of mothers attend antenatal care and deliver from health facilities.

"Besides, the country is still grappling with the challenges of early HIV diagnosis. The way we diagnose a child below 18 months is different and more expensive. It costs $25 (sh43,000) per test and effective January next year, it will cost $32 (56,000)," she reveals.

Many parents cannot afford this therefore they cannot tell the children's status until they are of age or until they fall sick.

Mulago's Paediatric HIV/AIDS Clinic is one of the few facilities in the country that can diagnose HIV from six weeks.

However, it is as if sorting out one challenge presents another; there is a problem of large volumes of syrups.

"Parents are given many types of syrups, which have a lot of sugar, leading to tooth decay. It is also stigmatising since some of the mothers have not disclosed their status to their husbands and family members. This leads to adherence issues. Because they cannot hide it forever, they abandon the treatment," says Betty, a nurse.

Adherence is taking the right drug at the right time, in the correct quantity.

"For elderly caretakers, measuring the syrup in the right quantities is a nightmare, yet we do not have enough health personnel," Betty remarks.

Kekitiinwa says the clinic has about eight nurses and three doctors, though there are many other doctors on the ward on voluntary and part-time basis.

"The doctor-to-patient ratio is very high given the overwhelming daily visits and the demand for nurses is also on the increase. We have decentralised services to other city clinics, but the patients prefer coming here.

"These children and caretakers need much attention especially with the one-on-one sessions at the pharmacies.

The Pharmacists who dispense ART are few yet drug description is detailed to avoid resistance, reactions and to generally explain to caretakers dosages since they are bulky. Most clients dread waiting," she says.

Light at the end of the tunnel

"There are innovations. We shall soon be dealing with less syrups. There are new formulations. The process is still with the National Drug Authority, but the World Health Organisation has tested them. These will improve adherence because they will be more acceptable," Kekitiinwa says.

The new structure will also reportedly enable the clinic to offer family-based care, including antenatal care, family planning and prevention of mother-to-child transmission services to reduce infections.

"But we need to immediately work with pastors to ensure that they tell people the truth. Until there is a curative drug or vaccine against HIV/AIDS, there is no short-cut," Kekitiinwa emphasises.

She says they had requested for an additional sh1b to embark on this exercise and general community sensitisation.

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