As most children go untreated, new efforts aim to expand care
Eight months after her second birthday, Meseret Bitew fell ill in a way her family could neither explain nor contain. Blood began seeping from the corner of her left eye. Within days, the eye swelled dramatically, and the pain became relentless.
Now 13, Meseret is from Sewenete Woreda in East Gojjam, in Ethiopia’s Amhara region. At the time, her family had no understanding of what they were confronting—only that it was escalating quickly.
Her father, Bitew Tesfaye, a subsistence farmer and the family’s sole provider, faced a stark choice: remain and hope for improvement, or leave for the capital in search of answers. As his daughter’s condition worsened, he chose the latter.
Shortly after the Ethiopian New Year in 2007, they traveled to Addis Ababa and sought care at Tikur Anbessa Specialized Hospital. What followed was not clarity, but a prolonged and disorienting search for a diagnosis.
“After a lot of struggle, we were first told it was tuberculosis,” Bitew said. “We followed the treatment, but she didn’t improve. The swelling got worse and began spreading toward her neck.”
Tuberculosis was eventually ruled out. The family was referred back to Bahir Dar, then again to Tikur Anbessa. Only after months of uncertainty did doctors identify the illness: blood cancer.
For Bitew, the diagnosis marked the beginning of a different kind of crisis.
“I ran out of money and didn’t know how to continue her care,” he said. At times, he carried his daughter on his back because she was too weak to walk. Living in a rented room in Addis Ababa, with no steady income, pushed him to what he described as a breaking point. “When the money was gone, I felt like giving up on everything. I was in total despair.”
Relief came unexpectedly. After nearly three years of struggling to sustain treatment, a stranger directed him to Tesfa Addis Parents Children Cancer Center, a nonprofit supporting children with cancer.
The organization became a turning point. It provided Meseret with food, shelter and schooling, while allowing her father to return home to support the rest of the family.
More than a decade into her illness, after multiple cycles of chemotherapy and radiation, Meseret’s condition has improved significantly. But the progress has not been linear.
“Just when we thought she was finished, the swelling came back,” Bitew said. She has since begun another round of chemotherapy. “It is difficult to know exactly where we are, but she is much better now than before. My daughter is a fighter, and we are not giving up.”
Stories like Meseret’s reflect a broader, long-overlooked gap in Ethiopia’s health system. For years, pediatric cancer care remained marginal—overshadowed by infectious diseases and constrained by limited resources, infrastructure and trained specialists. Facilities such as Tikur Anbessa carried the burden of care, often stretched beyond capacity.
Only in recent years have targeted efforts begun to address the gap, including initiatives led by the Ethiopian Society of Pediatric Hematology and Oncology, aimed at expanding specialized services and raising awareness.
Meseret’s story was shared publicly on April 7, 2026, during an event marking the inauguration of a new office for the Ethiopian Pediatric Hematology and Oncology Association. At the same event, Lelise Dhugaa, commissioner of the Oromia Tourism Commission, was named national honorary ambassador for pediatric oncology and hematology.
A central moment of the event was the signing of a memorandum of understanding between the Ethiopian Pediatric Hematology and Oncology Association and the Tesfa Addis Parents Children Cancer Organization. The agreement formalizes a partnership intended to combine clinical expertise with social support, addressing both the medical and non-medical burdens of childhood cancer.
Formed just four months ago by health professionals in the field, the association aims to bring pediatric cancer into sharper public focus. Its mandate includes strengthening advocacy, expanding awareness and promoting early detection—factors widely linked to improved survival outcomes. Through its collaboration with Tesfa Addis, the group is also seeking to respond to what practitioners describe as a growing incidence of cancer among children in Ethiopia.
Speaking at the inauguration, Alemayehu Girma, a physician and head of the association’s fundraising department, pointed to persistent structural constraints. Ethiopia, he said, continues to face a shortage of adequately equipped oncology centers and trained specialists. While awareness is gradually improving, he added, the system remains under strain.
Organizers said the agreement introduces a “total care” model designed to reduce treatment abandonment—a common challenge in low-resource settings. Many families travel long distances for care, only to encounter prohibitive costs for food, accommodation and basic needs.
Under the framework, medical professionals will focus on diagnosis, treatment and expanding clinical capacity. Tesfa Addis, in turn, will provide nutritional, psychological and logistical support, offering families a stable environment during prolonged treatment. The model reflects the kind of support that sustained patients like Meseret during the most difficult phases of her illness.
By integrating care with social support, the partnership aims to improve survival rates, which remain significantly lower than global benchmarks. “Our goal is to see childhood cancer survival in Ethiopia approach the global standard of 80 to 90 percent,” representatives of the two organizations said during the signing.
Lelise Dhugaa, recently appointed as honorary ambassador and herself a cancer survivor, used the occasion to challenge prevailing perceptions about the disease. Childhood cancer, she said, is often treatable, particularly when detected early.
Her role, she added, will focus on sustained public advocacy to counter the widespread belief that a cancer diagnosis is a death sentence.
“I am deeply honored to be here, especially as a survivor,” she said, describing the event as her first public appearance since completing treatment and returning home. “Being part of this effort gives me a sense of purpose—to work alongside families, health professionals and children who have shown extraordinary resilience.”
While praising the commitment of medical professionals, she also called for broader public engagement, arguing that meaningful progress depends on collective action.
Framing her role as both personal and public, Lelise said she would draw on her own experience with cancer to support broader national efforts to confront the disease.
“The most vital tool we have in this fight is advocacy,” she said. “Much of our society believes a cancer diagnosis is a death sentence. We must change that—people need to understand that recovery is possible and that survivors can go on to live full, productive lives.”
She pledged to use her platform and government networks to amplify awareness, while acknowledging the role of volunteers and ordinary citizens whose support has already altered the trajectory of many children’s lives.
“My hope is that this momentum reaches every corner of Ethiopia,” she said. “This is a fight we must take on together—for children and for everyone who needs care.”
Speaking on behalf of patients, Lelise stressed that those undergoing treatment must be treated with dignity and provided with comprehensive support throughout their recovery.
Medical professionals say Ethiopia’s pediatric oncology sector, though relatively young, has begun to expand. Specialized treatment has existed for roughly 15 years, once confined to a single unit at Tikur Anbessa Specialized Hospital.
Abel Hailu, a physician and president of the association, said that number has since grown to nine centers across the country. The workforce has also increased—from just a handful of specialists to roughly 35 doctors now in training or in practice.
Treatment options, once limited to the capital, have gradually extended to regional cities, including Hawassa, Jimma, Haramaya and Gondar.
Yet the expansion has not kept pace with demand.
“Only about one in four children with cancer in Ethiopia currently receives treatment,” Abel said. With an estimated 6,000 to 8,000 new pediatric cancer cases each year, fewer than 2,000 children reach care.
“That means three out of four are not getting the treatment they need,” he said.
He attributed the gap to a combination of low public awareness—particularly the misconception that children do not develop cancer—and persistent shortages of infrastructure and trained personnel. Despite gradual improvements, he estimates that no more than 10,000 children nationwide have ever received cancer treatment.
“Our association represents cancer specialists across the country, so that figure reflects the reach of the system as it stands,” he said. “The government subsidizes chemotherapy drugs, but we still face supply interruptions, limited radiotherapy capacity and a shortage of trained professionals.”
Tesfa Addis Parents Children Cancer Organization, founded 14 years ago by parents and health professionals, has emerged as a critical support system within those constraints. Including Meseret, the organization says it has assisted more than 3,000 children through what it describes as a “total care” model.
Its general manager, Kidist Gebreselassie, said the initiative began modestly as a “coffee and bread” program at Tikur Anbessa, providing basic sustenance to families during hospital visits. It has since expanded into a network supporting patients across seven hospitals, offering food, accommodation and psychosocial care.
The model relies on a combination of government-provided medical services, international partnerships—including support from the Aslan Project—and contributions from local institutions to help families navigate the gap between diagnosis and recovery.
Under the new agreement, Kidist said, the organization will continue to serve as a safety net for families unable to afford the indirect costs of care.
“We provide a home away from home,” she said, describing support that ranges from hygiene supplies and education to transport and emergency medical expenses.
But she cautioned that rising awareness is already placing new pressure on limited resources.
“People are beginning to understand childhood cancer more,” she said. “But as more families come forward, the system must grow with that demand. Capacity and infrastructure have to keep pace.”
