An the country’s main cancer treatment center, patients used to sleep outdoors. They had no choice: Uganda has only three such clinics for people with cancer and a population of 47 million. Uganda Cancer Institute (ICU), a government-run facility in the capital Kampala, offers heavily subsidized care. It is usually the only option for most patients, who come from the countryside or from towns hundreds of kilometers away.
With no money to pay for a hotel or the fee to get home between rounds of chemotherapy or radiation therapy, patients camped out on the hospital’s concrete terrace, sometimes for months.
In September, the The UCI enables a free shelter for adult patients and their families. Accommodation so far is just a tent with mattresses, but it is having a major impact on patients, whose chances of recovery have not been helped by having to sleep outdoors.
Amos Obote, who runs the programme, said that before the shelter opened, on average, one cancer patient died every day in the ICU hospital in Kampala. Today that figure has been reduced to about two deaths a month. The government plans to convert the tents into permanent structures by the end of 2023.
“We learned that cancer treatment is not just about ‘treatment,’” says Obote. “If you’re going to set up a cancer hospital in any low-income setting, you also have to prioritize care, or you’re going to get nowhere.”
When patients slept in corridors and terraces outside the hospital, they exposed themselves to other diseases, he says. “Some die of malaria and typhoid fever, rather than cancer.”
The government shelter was modeled after the local charity, the Bless A Child Foundation (BCF), which has been running similar programs for children with cancer. The new government shelter caters for adults and children.
Free housing addresses a major problem that devastates the chances of recovery for many in the developing world: leaving treatment early.
Of the 4,187 cancer patients admitted to the ICU in 2017, less than a quarter they completed their treatment. Although medical care is almost completely free, low-income Ugandans often stop treatment anyway because they cannot afford housing or transport to a hospital far from home.
Even children often have their treatment interrupted. a 2020 to study at the Mbarara Regional Reference Hospital found that 22% of children diagnosed with cancer were dropping out of their treatment. That compares to only 0.5% of children in Germany. Two-thirds of the roughly 3,000 children who develop cancer in Uganda each year die without going to hospital, according to Dr. Barnabas Atwiine, who led the 2020 study.
“Most of the children are taken to the hospital late, hence their low chances of survival. But even when they are taken on time, the biggest challenge is that many parents and caregivers drop out of treatment halfway through,” says Atwiine.
“Cancer treatment through chemotherapy sometimes takes forever,” says Imelda Busingye, senior nurse in the pediatric oncology ward at Mbarara Regional Reference Hospital. “These children come from remote areas and cannot travel every day for treatment and our room has limited space.”
Shelters have been shown to reduce treatment dropout by easing the financial burden. After a BCF shelter opened near a Mbarara hospital in 2020, treatment dropout fell from 30% to 9%.
“Cancer treatment is extremely expensive and challenging. When you go to the shelter and you see some of these kids, they wouldn’t otherwise be alive. They couldn’t have afforded to stay in the city for treatment,” says Atwiine.
The new shelter has already become a critical lifeline for Uganda’s poorest. They include Peter Stuart Ofrywrtyh, who has been dealing with Kaposi’s sarcoma, a rare cancer, for a year. UCI recently released him and advised him to return in six months, but Ofrywrtyh could not afford transportation to his home in a rural town 196 km (121 miles) from Kampala. His only solution was to stay at the shelter and repair shoes for money until he could pay the fare.
“Having a refuge inside the stores is touching. Although I still can’t find money to go back home, I’m not worried about sleeping on terraces and being exposed to mosquito bites and diseases,” says Ofrywrtyh.
Uganda’s cancer shelters wouldn’t exist if it wasn’t for Brian Walusimbi. In 2007, Walusimbi, a professional clown, was invited to ICU to perform for children with cancer at a Christmas party.
“I saw children and adults crowded into a small room with tumors that had disfigured their faces. It was such a painful space to be in. I decided that I had to do something,” says Walusimbi.
Walusimbi used her events to raise money for treatment, but was disheartened to see children still succumbing to cancer. “We discovered that the problem was not the treatment,” she says. “We were raising enough money for about 10 rounds of chemotherapy, but the kids were only showing up for two. They had no transportation from their villages to the treatment center. Even after chemotherapy, they were sleeping on the catwalks, without food.”
It was then that Walusimbi and a group of friends decided that they would focus on providing comfortable shelters and decent meals for the children and their caregivers. In 2010, they founded BCF and transformed an abandoned student hostel in Kampala into the country’s first cancer shelter.
Today BCF has four houses, two in Kampala, one in Mbarara and one in Gulu. More than 100 children and their caregivers are housed at BCF facilities, which have been expanded to provide meals, a live-in teacher, psychosocial support, and transportation to and from hospitals on treatment days. BCF homes have cared for more than 6,000 children, says Walusimbi.
Piracel Goretti’s seven-year-old daughter is among them. After several misdiagnoses at local health centers in his hometown of Zombo, Goretti was advised to travel 400km to Kampala for ICU treatment.
Goretti, who works in a cafe and whose husband recently lost his job, could not afford to stay in the capital. “I was approached by a nurse who told me about a home that could support us during our stay,” she says, recalling her surprise upon arriving to find food and a comfortable bed.
“We have similar stories here. Sometimes we have counseling and sharing sessions. When you hear other people’s stories, you feel better. You learn that you are not alone,” says Goretti.
One of the first BCF beneficiaries was Henry Mukangula. He spent much of his childhood in the Kampala shelter, leaving in 2020 when he was cancer free. He now works as a DJ and every Friday night he still goes to the Kampala shelter to play music for children like him.
“I don’t have much to offer these children, in whose position I was for years,” says Mukangula. “I can only play music for them at least to brighten their day for a minute, so they forget about syringes and tablets.”