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 percent 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 at the halfway point, is funded by the UK’s Department for International Development (DFID) and aims to transform the quality of life of 1,200 children with cancer by improving the accessibility, quality and equity of cancer services in Ghana. As part of the project, we are studying the effect of childhood cancer on families to understand what extra support would help them seek and obtain earlier diagnosis. Crucially, World Child Cancer is partnering with Ghana’s Ministry of Health and the Ghana Health Service on its goals. This includes collaborating to developing a new training curriculum around early warning signs for childhood cancers.
I am already seeing encouraging results. In the first half of the project, we were able to cover the cost of diagnosis for 362 children. We pioneered a set of early warning signs for common childhood cancers – blood, eye, and kidney cancers.- We trained 71 doctors, 103 nurses, paediatricians, ophthalmic nurses as well as other clinicians and the community at large from across the country to use these early warning signs. This has increased referrals for diagnoses of childhood cancers between hospitals, making earlier referrals more likely. We twinned our two hospitals with the Royal Hospital for Sick Children, in Edinburgh, Scotland’s capital, sending doctors and nurses from Edinburgh to provide specialist paediatric oncology training to over 100 of their counterparts in Ghana.
The training we have delivered has 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. As this training is further disseminated, we will move more quickly towards our goal of helping 1,200 children.
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 for 428 children. The average cost of a return trip to Accra for families we are helping equates to a quarter of their average monthly income. As 44 percent 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, is receiving 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. Abena, going on ten years old, has been brought to the hospital by her mother, Grace, to receive chemotherapy for acute lymphoblastic leukaemia every two weeks for almost a year. Grace’s sister now cares for her youngest daughter so she can care for Abena and continue travelling to the hospital; the cost outstrips her teacher’s salary. Abena has two more years of treatment scheduled.
Pictured left to right: Abena and her mother, Haniah and her father.
With this in mind, Megan Cruise, World Child Cancer’s Psychosocial Advisor, has conducted a pilot assessment to measure the well-being of 30 families, using a tool that measures the impact having a child with cancer has on families. Megan is collecting 30 further assessments using the tool. We hope this tool will become a support for families by giving them a space to discuss the process on them 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 is contributing 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 Haniah and Abena are healthy, happy women – where they and every Ghanaian know that no child needs to die from cancer if they are diagnosed and treated early enough.
Professor Lorna Awo Renner, Head of Paediatric Oncology, Korle Bu Teaching Hospital, Accra, Ghana