A cancer survivor sheds tears after recalling the pain she went through with breast cancer before removing one of her breast. PHOTO/NOELINE NABUKENYA
Cancer remains one of the most expensive non-communicable diseases to treat in Uganda, despite free services at the Uganda Cancer Institute (UCI). Low-income earners, especially those in rural areas such as Wakiso, face significant financial strain as they often have to buy missing medicines and cover other medical costs out-of-pocket. Patients report frequent shortages of essential medicines at UCI, forcing them to dig deep into their pockets.
With the rising number of cancer cases, many patients find themselves in dire situations when key medications are either unavailable or insufficient. “I am a farmer, and I have lived with cancer for more than 10 years. Before I knew what I was dealing with, I tried herbalists, but their medicine did not work,” says Haruna Kamulegeya, a resident of Ntinda-Bakka, Wakiso.
Kamulegeya first noticed a black spot on his right foot, which later became an itchy wound. Unaware of the severity of his condition, he waited for it to heal naturally. Two years later, the pain worsened, prompting him to seek help from a herbalist. “I was given a jerrycan of medicine, but it did not help,” he recalls. It was not until the wound expanded that he visited a local clinic in Kasubi, a Kampala suburb.
A tissue sample was sent to UCI, where he was diagnosed with cancer. Surgery was the first step in his treatment, followed by expensive medication that his family had to fund collectively. When Covid-19 hit in 2020, he could no longer afford transport to the hospital and stopped attending medical reviews. “I have declared myself cancer-free,” he says, though it remains unclear whether he has fully recovered.
The reality of self-diagnosis
Like Kamulegeya, many cancer patients rely on self-diagnosis and non-medical treatments, only seeking professional help when the disease has advanced. This trend, however, is slowly changing thanks to the Uganda Women’s Cancer Support Organisation (UWOCASO), which provides psychological, emotional, social, and financial support to cancer patients and survivors.
Through UWOCASO’s programmes, survivors have started small projects such as farming to sustain themselves. More than 50 patients in Mende, Masulita, and Wakiso sub-counties have been identified and supported, many of whom had lost hope and were struggling with depression.
Joyce Nanyonjo: Fighting stigma after recovery
Joyce Nanyonjo from Buteregga Village initially withdrew from her community after developing a wound on her scalp. The wound, caused by a chemical burn from hair oil, worsened into cancer and attracted flies, leading to severe social stigma. “I locked myself indoors, waiting for the day I would die,” she recounts.
UWOCASO’s intervention led her to UCI, where she received treatment. However, stigma persists, and she still veils her head to conceal the scar. “Even before treatment, I covered my head to keep the flies away,” she adds.
Rose Nakkazi: Overcoming abandonment
Rose Nakkazi, 58, from Kiwumu-Bukalango, had breast cancer for eight years before getting diagnosed. Initially attributing her symptoms to spiritual issues, she sought deliverance prayers before seeking medical help. “When my nipples started swelling and producing blood, I thought prayer would heal me,” she says.
Eventually diagnosed with breast cancer, she underwent a mastectomy. Financial struggles compounded her ordeal, as government-provided medicine was insufficient.
“Out of five prescribed medicines, I would only get one for free; the rest, I had to buy,” she explains. During her illness, her husband abandoned her and married another woman, leaving her alone with their two children. With support from the Catholic Church, she managed to afford treatment. Today, she has a new home, rental units, and a shop, all built with the help of the church. She now uses her position as a catechist to create cancer awareness and actively participates in UWOCASO projects such as poultry farming, piggery, and goat rearing.
Denise Atwine: Defying odds
Atwine was diagnosed with breast cancer in 2018 at Mulago National Referral Hospital, but a second test in Nairobi, Kenya, confirmed her worst fears. Initially, her husband dismissed her symptoms, discouraging her from seeking further medical tests. Determined, she returned to Uganda for another test. The doctor, sensing her distress, referred her to a counsellor instead. After gaining emotional strength, she repeated the test, which again confirmed breast cancer.
Atwine initially enrolled in UCI’s private wing, where patients receive faster attention. However, with UWOCASO’s advocacy, she witnessed improvements in general ward services. After losing one of her breasts to surgery, she turned to advocacy, leading cancer awareness campaigns countrywide. “We need a mindset shift. People believe cancer is a death sentence, but that is not true. Early detection saves lives,” she emphasises.
James Arnold Wasajja: A teenager’s battle
At just 19, James Arnold Wasajja faced an unimaginable ordeal. After experiencing persistent pain below his knee in 2022, doctors recommended tests that led to an amputation last year. “The pain was unbearable, but once the leg was removed, I felt relieved,” he says.
(L-R) Joyce Nanyonjo, who developed scalp cancer after a chemical burn from hair oil and faced stigma; Arnold James Wasajja, who underwent amputation due to cancer; and Haruna Kamulegeya, a cancer survivor displaying his scar. PHOTO/NOELINA NABUKENYA
A grim picture
A 2022 World Health Organisation (WHO) report estimated 35,968 new cancer cases and 24,629 deaths in Uganda that year. The five-year cancer prevalence stood at 77,028 cases, with a 12 percent risk of dying before age 75. Among men, prostate cancer, Kaposi sarcoma, and oesophagal cancer were the most common, while women were most affected by cervical, breast, and oesophagal cancers.
The true cost of cancer treatment
A 2021 study by Makerere University found that cancer patients at UCI spend between Shs300,000 and Shs800,000 per visit. Prostate and colorectal cancer patients incur the highest costs, often exceeding Shs600,000 per visit due to medication shortages and additional imaging and testing expenses. While government services at UCI are technically free, medicine shortages mean many patients must purchase drugs themselves. “The budget allocation to UCI is inadequate, and the demand is overwhelming,” a Ministry of Health official, speaking anonymously, admits.
Way forward
Wakiso District health facilities are ill-equipped to handle non-communicable diseases such as cancer, according to Frank Kalyango, the district’s officer in charge of non-communicable diseases. “The number of cases, particularly among women, keeps rising, yet our centres cannot provide comprehensive care,” he notes.
Gertrude Nakigudde, the chief executive officer of UWOCASO, stresses the importance of early detection. “Cancer is curable if caught early. We encourage regular screening and self-examinations.”
