Inside Uganda’s childhood cancer struggle

Moses Echedu remembers when some children receiving cancer treatment could not count on even one full meal a day.

For a seriously ill child, hunger was more than discomfort. It could weaken the body, make treatment harder to tolerate and push an already struggling family towards abandoning care altogether.

Today, Echedu says, children supported by the Uganda Child Cancer Foundation can receive two or three meals a day. It is a modest change in a disease that demands expensive medicines, specialist treatment and months away from home.

But it has helped some children remain in care. That progress captures both sides of Uganda’s childhood cancer story. More children are being diagnosed, supported and treated than before.

Yet many still arrive at hospital when their disease is advanced, after families have spent precious weeks seeking money, visiting traditional healers or hoping prayer alone will bring recovery.

Echedu, the foundation’s executive director, believes the fight cannot be left to doctors and parents alone. Reducing childhood cancer deaths, he argues, requires communities to recognise warning signs, health workers to refer suspected cases quickly, government to provide medicines and ordinary Ugandans to help families survive the long journey through treatment.

Established in 2006, the Uganda Child Cancer Foundation, or UCCF, supports families whose children have been diagnosed with cancer. Its work covers patient assistance, research, advocacy and community awareness.

Through its patient-support programme, Echedu said, the foundation has assisted more than 3,000 children with transport, food, play therapy and other basic needs. It has also trained more than 200 schools in cancer awareness, hoping to build a generation that can recognise possible symptoms early, seek treatment promptly and support cancer care in its communities.

That work matters because, for many families, a diagnosis is only the beginning of the struggle. Treatment can require repeated journeys to Kampala, long hospital stays and months away from work or school.

A parent may have to choose between earning an income at home and remaining beside a sick child. Transport, food and accommodation can become barriers even where medical treatment is available.

WHY A MEAL CAN DETERMINE WHETHER TREATMENT CONTINUES

In 2020, according to Echedu, UCCF did not yet have a fully functioning nutrition programme. By 2023, he said, every child under its care was receiving at least two or three meals a day.

The foundation believes that change helped reduce treatment abandonment caused by hunger. For children receiving chemotherapy and other cancer treatment, adequate food can help them maintain strength and remain in care.

For their families, meals supplied at the treatment centre also remove one daily expense from an already overwhelming burden. Echedu said the organisation’s support is made possible through local and international partnerships.

The Uganda Cancer Institute is one of its principal local partners. UCCF also raises money through the Uganda Childhood Cancer Colour Run, now in its fourth edition, as well as its Guardian Angel programme of monthly donors, an annual fundraising dinner and donations of goods and services.

“Alongside the Uganda Cancer Institute support as our local partners, the UCCF’s most visible fundraising effort, the Uganda Childhood Cancer Colour Run, now in its fourth edition, has become our major point for the public and a critical income stream,” Echedu said.

International partners include AFRON ETS of Italy, Cancer Kids First and St Jude Children’s Research Hospital, which supports training and capacity-building. UCCF also works with the Uganda Cancer Society, other non-governmental organisations and AHAVA.

Together, Echedu said, those partnerships help the foundation keep supporting vulnerable families.

SURVIVAL IMPROVES, BUT SLOWLY

Uganda’s childhood cancer survival rate has improved, though it remains low compared with countries where diagnosis and treatment are more widely available.

“Overall childhood cancer survival in Uganda has climbed from roughly 20 to 25 per cent to about 30 per cent, and we are hopeful that the 35 to 40 per cent mark is within reach in the next year or two,” Echedu said.

Put simply, a survival rate of about 30 per cent means that roughly three in every 10 children diagnosed with cancer survive. Even if the rate rises to 40 per cent, most affected children would still be lost.

The figure also hides large differences between cancer types. Some childhood cancers respond well to treatment when detected early, while others remain difficult to manage, particularly when children arrive after the disease has spread.

Echedu pointed to retinoblastoma, a cancer of the eye that mainly affects young children, as an area where specialist equipment has improved diagnosis and treatment. Before the Uganda Cancer Institute acquired the necessary equipment, he said, one specialist saw about 10 children a week with the condition.

The number has since increased to roughly 190 children a month. That increase should not automatically be read as a sudden rise in childhood eye cancer. It may instead show that more children are being identified and referred for specialist care.

With improved diagnostic and treatment equipment, Echedu said doctors are increasingly able to remove the cancer while preserving a child’s eyesight.

“Between 50 and 60 per cent of children treated for this particular cancer now keep their sight,” he said.

For the child, that can mean surviving cancer without also losing vision. For the family, it may reduce a lifetime of disability and dependence. But the equipment can help only those who reach the health system in time.

THE DANGER OF ARRIVING LATE

Too many children still reach hospital with stage three or stage four cancer, when the disease is advanced and treatment becomes longer, more expensive and less likely to succeed.

A child diagnosed at stage one may require seven or eight months of treatment before returning to school, Echedu said. A child brought in later may need far more time, medicines and specialist care.

He estimated that the resources required to treat one child with advanced disease could sometimes have treated two or three children diagnosed earlier. The reasons for delay are complex.

Some frontline health workers are not confident in recognising signs of childhood cancer. Some parents first visit traditional healers. Others rely on prayer before seeking medical attention.

For many families, however, the obstacle is simply money. Echedu said some parents take as long as a month to raise the transport fare needed to bring a child to Kampala. By then, a swelling may have grown, pain may have worsened or the cancer may have spread to other parts of the body.

This is why awareness alone is not enough. Parents may recognise that a child is seriously ill but still lack the money, referral or transport needed to reach specialist care. Uganda therefore faces a wider publichealth challenge: early diagnosis depends not only on knowledgeable families, but also on health centres that can identify suspicious symptoms and refer children without delay.

THE MEDICINE GAP

Government’s commitment to make 80 per cent of anti-cancer medicines available through the Uganda Cancer Institute remains central to the foundation’s hopes. UCCF aims to help cover part of the remaining shortfall, even if it can provide only five or 10 per cent of what is missing.

But medicine is only one part of treatment. A child also needs laboratory tests, specialist reviews, transport, food and somewhere for a caregiver to stay. Interruptions at any point can cause a family to miss appointments or abandon treatment.

That is why Echedu wants childhood cancer awareness to remain a central responsibility of both the Uganda Cancer Institute and UCCF. His message to parents is direct: do not wait. “Bring your child in early, because UCI has the capacity to save lives,” he said. For disadvantaged families who reach the foundation, he said, its promise remains unchanged: to walk with them for as long as treatment takes.

Uganda’s childhood cancer battle will not be won by one fundraiser, one hospital or one charity. It will depend on whether a child with suspicious symptoms is recognised early, referred quickly, fed properly and kept in treatment long enough to have a real chance of survival. In that chain, a meal, a bus fare or an alert health worker can be as decisive as the medicine itself.

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