Mr Tumi senses something is not right with his beautiful 5-year-old daughter, Tumiwaa. Yes, she picked up the usual cold from school a few weeks ago but now, she spends too much time in bed, appears pale and has not played outside for the past three days. The high temperatures have been ongoing for over a week now; this fever has not responded to different brands of paracetamol, anti-malarials and antibiotics. The cough is also worsening especially when she lies flat and she intermittently catches her breath like someone who has been running a marathon.
“Last night, Tumiwaa nearly died; I had the scare of my life!” Mr Tumi recounted. “She couldn’t lie flat, she kept screaming in pain and she had developed a strange skin rash all over her body. She was burning hot and would not allow anyone to touch her. She was in so much pain and she was breathless.”
Tumiwaa had been rushed to the hospital and immediately admitted to the emergency ward. She required blood and platelets transfusions but there was none available at the hospital’s blood bank. Mr Tumi was asked to check another hospital for platelets; he had to go himself in the middle of the night. Tumiwaa needed very potent antibiotics which were not immediately available in the hospital; almost all private pharmacies had closed. Again, the x-ray machine had broken down and Tumiwaa could not get a much-needed chest x-ray done. Finally, even though doctors suspected that this was leukaemia (cancer of the blood cells) the definitive bone marrow test to confirm it could only be done several days later. Other special tests that were needed to assist in further classifying which type of leukemia could only be done in private laboratories and Mr Tumi simply could not afford them. The unbearable shock hit him when he was told that the NHIS card his daughter had could not be used, as being a child, her cancer treatment was not covered under that scheme!
This is an all too familiar ordeal for a parent in Ghana whose child has been diagnosed with any type of childhood cancer. The delays, the psychological and emotional stress, the lack of diagnostic and supportive care, the dire financial burden and the absence of modern tests and facilities to aid in the diagnosis and treatment of childhood cancers: these are well-known challenges parents and their children with cancer face daily in Ghana.
Childhood cancers can mimic several other conditions, especially in the early stages of the disease. The general population including parents and other caregivers have to be able recognize the early warning signs and symptoms of childhood cancers to be able to take appropriate action. For instance, the bone pain and fever in leukaemia can mimic bone pain crisis in sickle cell disease or a common infection like malaria. It is common to attribute headache and vomiting from brain tumors to other causes or even ignore them as tension headaches till they become persistent and/or severe. Of note, cancers may be present without any pain; thus, painless swellings, unexplained bleeding, unprovoked bruising, headaches and vomiting especially in the early hours of the day, protracted fever especially not responding to usual treatment, white spot in the eye of babies and children and unexplained weight loss must be immediately reported to healthcare practitioners who should investigate appropriately.
Healthcare professionals must have very high index of suspicion and refer appropriately. There are only two comprehensive childhood cancer centres in Ghana – Korle Bu Teaching Hospital (KBTH) and Komfo Anokye Teaching Hospital (KATH) and only a few childhood cancer specialists. The diagnosis of childhood cancers requires specialized blood tests, imaging and microscopic examination of tissues which are not routinely available in all health facilities. All suspected cases must be discussed with the treatment centres and referred promptly.
We stand the best chance of curing childhood cancers when they are diagnosed early, when patients with suspected cancer report early to our referral centers. Once in the facility, diagnosis must be swift, accurate and treatment instituted promptly. This involves the expertise of practitioners from several disciplines including emergency services, laboratory, radiology, blood transfusion services, different surgical disciplines and radiotherapy services. It is essential that expertise and resources are effectively coordinated in a timely manner. This is crucial, if cure is to be achieved with minimal unwanted complications. Unfortunately, patients in Ghana continue to experience in-hospital delays as a result of absence of key services and trained staff. Where present, such services and specialists are mainly available for adult patients. Similarly, critical medicines and other agents for supportive care for children undergoing cancer treatment such as some antibiotics, pain medications and blood products are not readily available.
Ghana continues to record significant successes in curbing communicable and infectious diseases among children, especially those under the age of five years. There are funded campaigns in the areas of infectious diseases like HIV/AIDS and Tuberculosis, and for vaccine preventable diseases, which have led to the control of most of these conditions; the result being an improvement in child survival in Ghana. Many more Ghanaian children are now surviving beyond 5 years of age. Coupled with increased awareness, we are now beginning to see more diagnosed cases of childhood cancers in the two largest hospitals: KBTH in Accra and KATH in Kumasi. These two referral centers combined attend to approximately 350 new cases of childhood cancers annually. This is still only about a third of the annually expected 1000 new cases based on population figures. Children continue to be brought late when the disease is advanced with little chance of cure, especially in our setting of constrained resources.
The cost of treatment, which is not covered by the National Health Insurance Scheme (NHIS), remains very high as everything, including anticancer drugs, supportive care and hospital admissions are still completely borne by parents. The result is a very high default treatment rate. Generally, a third of patients abandon treatment and eventually die and another third succumb within days to weeks of presentation due to advanced disease. Only about a third of all patients go on to complete treatment. This is not surprising as treatment of childhood cancers can take between 4 months to 3 years. The financial demands on families are enormous including transportation costs, loss of income and sometimes treatment may require relocation to the vicinity of the treatment centre.
A diagnosis of childhood cancer dramatically changes the dynamics of any family. The responsibility for ensuring cure should be shared by all including government, private sector, non-governmental and religious organizations, philanthropists, parents and healthcare professionals. We need to take a cue from the achievements of colleagues in other countries who have been able to ensure improved survival of children with cancer. For instance, just over 50 years ago in the United States of America (USA), a child diagnosed with leukemia would probably not have survived beyond a year. Today, 9 out of 10 children diagnosed with leukemia are likely to be cured in USA and other high-income countries. These achievements are as a result of concerted efforts from all stakeholders concerned with childhood cancers and driven by national and international collaborative scientific research. If we are to succeed in improving childhood cancer survival, then we must follow a similar blue print.
It is in this light that childhood cancer care providers in Ghana are collaborating to form the “Ghana Childhood Cancer Network” (GCCN) which seeks to coordinate clinical care, research, training and advocacy and make input into policy development for overall improvement in the survival of children with cancer in Ghana.
September is Childhood Cancer Awareness month. Let us all join hands in advocating for and supporting the move to ensure that no child affected by cancer in Ghana suffers needlessly. We are calling on policy makers to include childhood cancers on the NHIS; include screening for eye cancer at child weighing clinics; support childhood cancer awareness creation activities nationwide and facilitate capacity building in all aspects of care. Every child has the right to equity in accessing quality health care in Ghana and to achieving a full life. Long live the nation’s future leaders!