Kampala, Uganda — Patients from all over Uganda and neighboring regions travel to Kampala for treatment at the only public institution in the country that provides comprehensive cancer care. Despite improvements, many still don't have a place to sleep.
Alice Otiang tosses and turns on a mat as she tries to sleep through her pain but fails. Fighting back tears, she weakly lifts her head and looks around at the dozens of fellow patients and family members, crowded among the mats, basins, saucepans and wooden benches, inside the concrete waiting shed on the grounds of the Uganda Cancer Institute.
Otiang, 37, is one of an estimated 85% of patients who travel from different parts of Uganda and neighboring countries to seek treatment at UCI; more than half do not have a place to stay and make camp as close to the facility as possible.
She and her eldest son have traveled 460 miles to UCI, where she is receiving chemotherapy for stage 3 ovarian cancer. The local hospital in Moroto, where she lives and had worked as a teacher until her July 2021 diagnosis, does not offer this treatment. She felt better after her first visit to UCI, despite the terrible discomfort of sleeping out on the hospital's veranda in her weakened state, but her cancer returned in February 2022, and she reluctantly decided to try again. The eight-hour bus journey costs her and her son 140,000 Ugandan shillings ($37), which they can afford only with small contributions from relatives.
"If not for my son's persuasion, I wouldn't have come back here," she says. "The previous experience of sleeping on the hospital veranda, listening to the noise of other patients, the smell of flesh and feeling hungry... But I must try to get better for my children."
Founded in 1967 as the only public facility that offers comprehensive cancer care services in the country, UCI has made progress in recent months but continues to struggle to meet a chronically high demand for beds.
Uganda has the ninth-highest rate of new cases diagnosed in Africa each year, and the fourth-highest mortality rate on the continent, according to 2020 data from the World Health Organization's International Agency for Research on Cancer. About 33,000 Ugandans are diagnosed with cancer each year, and about 7,400 of those seek treatment at UCI.
"Outpatients at the cancer institute have always faced social challenges, accommodation being one of them," says Amos Obote, UCI cancer patients' navigations program manager. "The problem has been worse in the past, with patients sleeping everywhere around the hospital."
After local news outlets reported on patients sleeping on UCI's veranda last August, the hospital banned patients from the area and began setting up tented "care homes" on its grounds -- which quickly filled to capacity. As of November 2022, the 120-bed hospital had erected three large tents on its grounds, with mattresses for about 300 patients; the rest continue to set up camp in the waiting shed or at any other accommodations they can manage.
Dr. Jackson Orem, UCI executive director, says the hospital has requested government funding to expand its 120-bed capacity to 365 beds, along with facilities for a laboratory, MRI, surgical suites, outpatient clinics and other needs. The five-year plan would cost 5 billion shillings ($1.3 million), he says.
Jacob Ampeire, spokesperson for the Ministry of Health, says UCI gets its funding from the Ministry of Finance but did not specify how much. Ampeire declined to comment further, saying UCI is an autonomous body that can speak for itself. The finance ministry did not comment.
Efforts have also been underway for several years to establish cancer centers in Arua, Mbarara, Gulu and other rural areas, but the coronavirus pandemic and other factors delayed funding and construction. The pandemic restrictions also meant fewer patients could access cancer diagnoses and early treatments, and the prioritization of COVID-19 patients resulted in reduced funding for UCI, which has led to an even higher demand for cancer treatment today, Obote says.
"When diagnosis increases, more patients come to the center," Obote says.
Otiang and her son were offered free beds at a hostel run by the Uganda Women's Cancer Support Organisation, 11 kilometers (7 miles) away, but they would have needed 10,000 shillings ($3) daily for public transportation. Spending 10 days camping in the waiting shed was a better option, they decided.
Bakungu Gladys, who is receiving treatment for stage 3 breast cancer, is one of the lucky patients who have been granted a mattress under the tents.
"It gets hot at night and sometimes so cold when it rains, but it beats sleeping outside," she says. "I am happier because this comes with security."
For hundreds of patients who have not found a bed at UCI, either inside the building or under the tents, hospital life has become a game of hide-and-seek. Like Otiang, Rose Draru, who traveled to UCI from Arua, a 440-kilometer (273-mile), 7.5-hour journey from Kampala, also found that the concrete waiting shed was the least terrible option.
"My daughter and I were sleeping far from the cancer ward because we don't want to be seen near UCI. We have been chased," she says. "But where can I go? I can't travel to Arua daily then come back here for treatment. It's impossible."
The situation was even worse 20 years ago, says Gertrude Nakigudde, a breast cancer advocate and CEO of the Uganda Women's Cancer Support Organisation. As a Kampala resident, she had not needed sleeping accommodations during her own cancer treatments, but she remembers that the facility had fewer beds at the time and crowds of patients and family members sleeping outside.
She hopes the situation continues to improve.
"The [tented] care home is a relief to those patients that are lucky to get in, but the numbers of those still in need is overwhelming," she says. "I receive five calls daily from patients, some even beg to stay with me, but it's not possible because I do not have the space."
Her organization is preparing a fundraising campaign to build a permanent care home to offer food and shelter to UCI patients and help people acquire support and skills to deal with life after cancer.
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Lynda Nakalawa, a clinical psychologist at Akili Mental Health and Coaching Consultants, says the mental state of patients plays a big part in their cancer recovery.
"It's easy to imagine that because a patient is getting the best medical care, they will get better, but it's important to remember that illness from cancer is fraught with fears that purely medical intervention may not address, as many doctors are kept busy with the medical side of things and not able or trained to take care of the psychological," she says. "Things like meals, clean bed linen, a change of clothes and a familiar face in the sea of strange new faces all contribute to the psychological well-being of the client. This can go a long way to help calm the mind, which has the potential of boosting the body's ability to battle disease."
Despite the cold rainy nights, mosquito bites and hunger, Otiang is grateful for the patient community she is now a part of and the emotional support it offers. She loved going to church for solace, but this stopped because of daily physical weakness. "I cannot burden my son with my thoughts because he has gone through more than a boy his age should. I have made friends over the course of my treatment, and we share our problems and talk about family. This strengthens me; I don't know if I would still be here without that support system," she says.
"If you have breath, you wake up, pray, thank God for what you have, and fight to live the next day," Otiang says.
