Childhood cancer - A growing problem

Article: Salome Donkor
Some parents of child cancer patients who recounted their traumatic experiences in a documentary compiled by the Children’s Department of the Korle-Bu Teaching Hospital have pathetic stories to share.
I had the opportunity to watch the film after interviewing Dr Lorna Awo Renner, a paediatrician at Korle-Bu. One woman whose baby was diagnosed with cancer of the eye recounted how they supported the child to go through an expensive and painful treatment, which resulted in a surgery to remove the damaged eye in South Africa. The treatment, which involved the replacement of the damaged eye with an artificial one, also included chemotherapy at an expensive cost.
One man lost two children because he could not afford the cost of treatment for a bone marrow transplant that needed to be done in South Africa to save the lives of the children who were diagnosed with a kind of cancer that caused life-threatening blood disorders.
To raise awareness of the suffering caused by cancers in children and help them to get the best possible treatment and care, the Ghana Parents Association for Childhood Cancer (GHAPACC) was inaugurated in Accra to commemorate the International Childhood Cancer Day, which fell on February 15.
The mission of the association is to contribute to the health needs of children with cancer and other life-threatening blood disorders and their families.
It is also to provide support for children with cancer and make available to parents and families of newly diagnosed children information and logistics to organise support groups to assist children and their families to cope with the stress that accompanies diagnosis of childhood cancer and advocate for improved care for children with cancer and other life- threatening blood disorders.
The word ‘cancer’ conjures up deep fears of a silent killer that creeps up on a patient without warning. It evokes such desperation that it has become a metaphor for grief and pain, a scourge that strains intellectual, social and emotional resources.
However, when cancer affects a child, family members, friends and the patient are touched with such emotions and frustrations that cannot be described.
Cancers in childhood are supposedly rare events and, therefore, do not receive as much attention as other common diseases like malaria, diarrhoea, pneumonia, among others. However, the extent of sickness and pain caused by these cancers places a high burden on individuals, families and their communities.
Statistics from the World Health Organisation (WHO) indicate that there are over 20 million people living with cancer in the world today, with majority in the developing world.
The WHO estimates that each year, more than 160,000 children are diagnosed with cancer and 90,000 will eventually die of it.
Health experts maintain that childhood cancers can be cured, provided prompt and essential treatment is accessible. However, the most pathetic aspect of the problem is that 80 per cent of children with cancer live in developing countries where effective treatment is not available and, as a result, one in two children diagnosed with cancer will die.
According Dr Renner, who is working in collaboration with the GHAPACC, access to treatment for children with cancer in Ghana started in 1965 when the Burkitt’s Tumor project, which offered free diagnostic services and drugs treatment for children with the commonest type of cancer in Ghana (Burkitt’s lymphoma), got underway.
She said that offered real hope of cure for hundreds of children, mainly from deprived rural areas, many of whom are now adults and contributing their quota to society.
The paediatricians who were pioneers of the project were Procis Nkrumah and the late Dr (Mrs) Susanna de Graft Johnson, with Prof Janet Neequaye, Dr R. Biggar and Prof Jennifer Welbeck playing important roles.
Unfortunately, this project, which was implemented with an American grant, ended in 1994. Thereafter, the Canadian High Commission, using proceeds from the Terry Fox Run, continued sponsorship from 1995 to 2001 and since then it has been up to families themselves to fund their children’s treatment.
Dr Renner said in Ghana there was no comprehensive epidemiological data on the magnitude of childhood cancers but she said with the country’s population of about 20 million, they expected about 1,200 children below 15 to be affected yearly.
She said there were only two centres at the Komfo Anokye Teaching Hospital (KATH) in Accra and Korle-Bu in Accra that had paediatric cancer units and children were referred from all over the country, even as far as Bawku, to these centres and that such children invariably arrived at an advanced stage of the disease.
Although in highly developed countries over 70 per cent of children with cancer are cured and over 90 per cent cured for some specific cancers, Dr Renner said the outlook in Ghana was dismal.
She mentioned late presentation, as a result of ignorance of families and health workers, lack of trained health workers to manage cases, limited access to the two paediatric cancer units, limitations with diagnostic capacity, inductee supportive care and cost of chemotherapy as some of the reasons.
She said the approximate cost to treat fully and cure one of the commonest childhood cancers (Burkitt’s lymphoma) is GH¢500 per patient within a period of three months, while others such as leukaemia, which is more expensive to treat, costs about GH¢10,000.
She said the cost of treatment was not covered by the National Health Insurance Scheme and parents of the patients lost hope as a result of lack of funds, leading to treatment abandonment.
She, therefore, asked philanthropic organisations, individuals and corporate bodies to join hands with the GHAPACC in order to provide financial, logistics, psycho-social support, among others, for children with cancer and life-threatening blood disorders.
“Using the slogan of the Paediatric Society of Ghana ‘Our children’s health is our nation’s wealth’, we have to show that we ‘genuinely care and support’ and contribute in whatever way possible to ensure that the children of Ghana have access to improved health care,” she said.
Chaired by Mr F.K. Aveh, the association advised parents to look out for the St Siluan (a Russian monk who died in 1938) warning signs for childhood cancer and seek medical help for persistent symptoms.
These are a white spot in the eye, new squint, blindness, a bulging eyeball, a lump in the abdomen and pelvic, head and neck, limbs, testes, glands, unexplained fever, loss of weight and appetite, fatigue, easy bruising or bleeding, aching bones, joints, back and easy fractures, as well as neurological change in behaviour, balance, gait, headache and enlarged head.