Unlocking the power of early diagnosis for childhood cancers in Ghana
Professor Lorna Awo Renner, Consultant Paediatric Oncologist and World Child Cancer Ghana Programme Lead
The thought of a child dying of cancer is devastating. The thought of a child dying unnecessarily of cancer is an outrage. Many common childhood cancers can be cured if diagnosed and treated early. Yet in my country, Ghana, socio-economic and cultural issues conspire to make it happen regularly.
Just 23% of the 1,500 children who develop cancer each year in Ghana will receive a diagnosis, go on to get treatment, or palliative care.
In Ghana, myths around childhood cancers contribute to late and low diagnosis rates. Some believe children cannot get cancer, or don’t know the early warning signs. Some believe that childhood cancers are incurable, that a child with cancer can infect another child with it by playing together, or that a child who survived cancer will be infertile and cannot make a good marriage later.
Alongside the financial and logistical burden of seeking help, these myths rob parents of hope and stop some seeking help. I want to tell them that I have seen many sick children get well.
With an early diagnosis and the right treatment, children can return to their families, childhoods and futures.
That is why I agreed to lead World Child Cancer’s project, ‘Transforming the lives of children with cancer in Ghana’, run in Accra’s Korle Bu Teaching Hospital and Komfo Anokye Teaching Hospital in Kumasi.
The three-year project which is now completed, was funded by the generosity of UK donors and the Foreign, Commonwealth and Development Office (FCDO). For every £1 donated to the appeal by an individual living in the UK, the UK government also contributed £1 of UK aid – a total of £849,956 including £415,717 of matched funding. The project has transformed the quality of life of 1,131 children with cancer by improving the accessibility, quality and equity of cancer services in Ghana. Considering the disruption caused to health services by the pandemic, we are particularly proud of this achievement.
As part of the project, we also studied the effect of childhood cancer on families to understand what extra support would help them seek and obtain earlier diagnosis. Crucially, World Child Cancer partnered with Ghana’s Ministry of Health and the Ghana Health Service on its goals. This included collaborating to developing a new training curriculum around early warning signs for childhood cancers.
During the three-year project, World Child Cancer provided training on childhood cancer early warning signs to a total of 1,288 paediatricians, clinicians & nurses working in the regional hospitals in 10 regions in Ghana. At the same time, 325 community health workers working in the 10 districts in Volta Region in Ghana received training on childhood cancer early warning signs with special focus on retinoblastoma [eye cancer].
This increased referrals for diagnoses of childhood cancers between hospitals, making earlier referrals more likely.
The training we have delivered has also addressed the myths around childhood cancer. Taking this message to communities, it is part of the early warning signs messaging we used in a partnership with The Daily Graphic, a national daily newspaper widely read across Ghana. We also produced this as a radio and TV advert, which was broadcast nationally and on six local radio stations in five Ghanaian languages as well as English.
The reality in Ghana is that when children do receive treatment, the cost forces many families into debt or even poverty, and some have no choice but to abandon treatment. Getting to the hospital is expensive, so we assessed which families we knew were the most in need and covered transport costs. The average cost of a return trip to Accra for families we are helping equates to a quarter of their average monthly income. 44% of the population live in rural communities.
it takes an average of six hours for families to reach us by road; sixteen hours if they come from the north.
This means many families have to find private rented accommodation close to the hospital – at great cost, far from the rest of their family – or camp out in our ward. Worrying about the fate of the child, families having to be apart, and lacking funds for treatment puts serious psychological strain on the whole family.
Haniah, a little girl of two and a half, received treatment at Komfo Anokye Teaching Hospital for retinoblastoma, an eye cancer mostly affecting children below the age of six. At first, her father brought her by road to the hospital from their home in Ivory Coast, an 11-hour trip on three buses. Inevitably, doing this regularly was difficult, so Haniah and her father moved to Ghana to continue treatment, leaving her mother and siblings behind.
With this in mind, Megan Cruise, World Child Cancer’s Psychosocial Advisor, conducted a pilot assessment to measure the well-being of 111 families, using a tool that measures the impact having a child with cancer has on families. This tool gives families a space to discuss the process and identify what practical support they need most; information that can be used to shape future childhood cancer policy at national level.
Working in partnership with Ghana’s main health agencies, this project has contributed to the United Nations’ Sustainable Development Goal number 3, accelerating progress towards Universal Health Coverage for children with cancer in Ghana. I can see a future where children like Haniah have the chance to become healthy, happy adults – where they and every Ghanaian knows that no child needs to die from cancer if they are diagnosed and treated early enough.
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Naa’s Story
We first met Naa in 2016 when she was diagnosed with Wilm’s Tumour at 7 years old. In 2021 the cancer returned and Naa underwent treatment again. She has battled cancer twice and is now back in school.
Read moreJoseph’s update
We first met Joseph in 2019 after he was diagnosed with Leukaemia. Find out more how he is doing after his successful treatment.
Read moreKayin’s story
Kayin was diagnosed with Burkitt’s Lymphoma. He is now working as a carpenter and is feeling happy and strong.
Read moreRebecca’s Update
Read more about our catch-up with Rebecca after undergoing cancer treatment through World Child Cancer in Ghana six years ago.
Read moreHassan’s story
14-year-old Hassan from the Machinga district of Malawi was diagnosed with Acute lymphoblastic leukaemia (ALL) last year.
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Five years after developing cancer and two years of treatment later, six-year-old Tiwo is doing well
Read moreFranklyn’s Story
Meet Franklyn, now 17, who is fully recovered from cancer and dreams of becoming a doctor to help others
Read moreRebecca’s Success Story
Rebecca is now able to return to school after undergoing cancer treatment through World Child Cancer in Ghana
Read moreMy road to recovery
Prince went on to become a childhood cancer advocate and help many other children just like him when he recovered from leukaemia. Read More
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