From the extreme end of St Mary’s Kiruuli primary school in Kifamba, Rakai district, Dominic Matovu watched as the pupils ran about in the school compound during lunch break.
From his strategic position, he could easily monitor what was going on at the school’s makeshift kitchen where pupils were being served porridge, and, groups of others seated under tree shades enjoying a combination of porridge and sweet potatoes for lunch.
Matovu is one of the pioneer community workers who volunteered to associate with people suffering at a time when almost none, except close family members, would stand with those afflicted with HIV/Aids.
“I started working with Kitovu Mobile Aids Organisation [KMO] in 1987; I had a friend, John Kakonge, who introduced me to Sister Ursula Sharpe who was leading a team of nurses that visited and treated the sick from their homes,” Matovu told The Observer on November 22.
Sharpe, an Irish nun working with the Medical Missionaries of Mary (MMM), pioneered the care and treatment for Aids patients in Rakai district after being touched by the suffering the patients admitted at Kitovu hospital went through.
With two young nurses, Robina Nakasirye Ssentongo (now Kyotera Woman MP) and Cotilda Nanteza, she travelled the length and breadth of Rakai to offer relief care for the sick.
“We were driven by the urge to serve humanity; we knew we could prolong their lives, and we wanted them to die with dignity without the diarrhoea and wounds all over their bodies,” says Ssentongo.
They were, however, confronted by negativity from the community and the families of the sick. Many wondered what this mzungu (Sharpe) wanted to do with the blood samples she took from patients.
“The act of taking a blood sample seemed strange to many; it was unheard of and many questioned why and where she was taking the blood,” Matovu says.
Soon, the community became suspicious even of the drugs Sharpe and her team were giving to patients. Word was that the drugs were meant to quicken a patient’s death.
“I took them to treat my elder brother Michael Lubega, but the moment the team left, the family members threw away the drugs on grounds that if he took them, he would die faster,” Matovu says.
Instead, as the patients continued to waste away, some families moved them out of the house to the banana plantation, based on the belief that the disease was airborne and more contagious indoors.
Others believed it was a form of witchcraft by Tanzanian fishermen on Ukerewe island, who were retaliating for their mukene (silver cyprinid) that was stolen by their Ugandan counterparts at Kasensesero landing site in present-day Kyotera district.
On the advice of traditional medicine men, many threw away movable properties they had acquired out of the sale of the stolen mukene in an earnest hope of reversing the witchcraft.
“One man at Kannabulemu stashed cash in ekikapu [local palm leaves bag], tied it to a sheep and dumped it in a forest [near the Uganda-Tanzania border],” Matovu says.
Owing to lack of information and the mysteries that surrounded the disease, families were wiped out, and villages were deserted as the disease continued to spread.
“On average, we would report about five to ten new cases in a village every week. The numbers could have been higher but due to the fear that associating with the mzungu would lead to the disease eliminating the entire family, very few agreed to be registered,” Matovu says.
The fears were exacerbated when Matovu’s colleague, Kakonge, with whom he had been working, got sick and eventually died. Kyotera Woman MP Sentongo recalls: “Kakonge had been one of the instrumental community workers that made our work easy, because before going to a patient, the community workers would first go and convince the patients to allow us treat them, and, they would keep monitoring them and encourage them to take the medicine.”
Matovu too lost a daughter before his wife, Restatuta Namata, got sickly until she died at Kalisizo hospital where she had gone to deliver their would-be third child. It had not crossed Matovu’s mind that he had HIV/Aids until he saw his wife struck with herpes zoster (kisipi), and himself having on-and-off episodes of ill-health.
NEW LEASE OF LIFE
Following the death of his wife, Matovu married Joyce Naggayi.
“That is when I understood the entire village knew that I had Aids, because wherever I was away, they would come home and tell her that she had come to die,” Matovu says.
Strangely, his first child with Naggayi tested negative but the two that followed died in infancy as the couple also got sicklier. In 2002, Matovu tested positive for HIV at KMO and was introduced to antiretroviral (ARV) treatment at Uganda Cares clinic in Masaka hospital.
Since it was just starting in Uganda, the Aids Healthcare Foundation (AHF)-funded Uganda Cares was enrolling patients resident in Masaka district. This was part of the initial arrangement between AHF and then Masaka LCV chairman, Vincent Bamulangaki Ssempijja, the current minister of Agriculture, Animal Industry and Fisheries, having visited their headquarters in Los Angeles, USA.
Ssentongo was not about to see another of her pioneer community workers die. She thus advised Matovu not to make any mention of his Rakai residence while at Uganda Cares, but claim that he was a resident of Ssenyange in Masaka municipality.
“Since that day, [Ssentongo] got a special place in my heart because all hope was gone since the available ARV treatment was for the rich,” Matovu says.
A year later, Naggayi was also started on ARVs and has since given birth to four HIV-negative children.
“When she got sick, her relatives came to take her away, but I told them that unless they were taking her to die, it was better to leave her with me because there was a chance of her getting treatment,” Matovu remembers.
AHF has since been renamed Uganda Cares and spread its services beyond Masaka hospital to cover the entire country.
While Matovu goes to Kiruuli primary school to teach, Naggayi remains at home tending to their plantations and family.
She is also a member of a women’s group that weaves crafts for sale. Last week, I found her with other women weaving baskets. Death is not something she dwells on, thanks to ARVs.
“We are now living a hopeful life; we are engaged in productive activities to ensure a better future for our children,” she says.
The survival of orphaned children was one of the major problems that the early caregivers were confronted with.
“As we treated the patients, they would ask us, ‘I am going to die anyway, but what will happen to my children?’ It was a challenge we had to find an immediate intervention for,” Ssentongo says.
At the time, you could find an entire village with child-headed households. Without means of survival, the orphans became a source of cheap labour on plantations, while some of the girls ended up in sex work in small townships and landing sites, ending up with HIV too.
By the early 1990s, other organisations such as The Aids Support Organisation (TASO), World Vision, Rakai Health Sciences Program and InterAid International, among others, had come with interventions on child and school support.
“As InterAid, we basically went in to do a needs assessment survey but the situation on ground forced us to come in with interventions such as education support, building houses for the orphaned children, community empowerment and support for the caregivers,” says former Kakuuto MP Mathias Kasamba, who was once a field officer with InterAid International.
At one point, the entire enrolment at St Nicholas Manya primary school in Kifamba sub-county was comprised of children orphaned by Aids, supported mainly by Kitovu Mobile Aids Organisation and World Vision.
“That was before the introduction of Universal Primary Education [UPE], but many of them could not continue with school after P7, which offered another challenge that we had to think of an intervention that would give them practical skills; that is how we introduced the mobile farm schools,” Ssentongo said.
The greater Masaka sub-region remains inspirational with how a disease that started there was eventually tamed and pilot programmes first used in the districts of Rakai and Masaka eventually became models embraced by government and sub-Saharan Africa.