Fighting childhood cancer
Cancer affects children as much as adults, but there is a less attention given to this scourge especially by the parents. In this report, JOSEPH OKOGHENUN illustrates the implication of this negligence.
Little Miss Nkechi Okoro, 10, was lively until few years ago when she started to experience constant cold, fatigue, headache and joint pain. Her parents, thinking Nkechi could be having malaria, took her to a nearby pharmacy store and purchased some malaria drugs. But her condition did not improve. When her health condition continued to deteriorate, Nkechi had to be rushed to a nearby private hospital at Ikorodu, a fast developing suburb in Lagos.
After examining her, the paediatrician who saw Nkechi referred her to the Lagos University Teaching Hospital (LUTH) where she was diagnosed of leukemia, a deadly type of cancer. Healthcare providers at LUTH swung into action and got Nkechi back to her feet within a short time.
Unlike Nkechi, a high number of children living with cancer do not survive it. Although Nigeria has a high number of children living with cancer, Founder of the Children Living With Cancer Foundation (CLWCF), Dr Nneka Nwobbi, who works with many children living with cancer, said Nigeria does not have the data of the children who are battling with cancer.
Therefore, it was wrong for parents to assume that children do not have cancer, Nwobbi said.According to experts, late presentation of childhood cancer cases has led to the death of many children in Nigeria.
Nwobbi, who spoke during “The Bald Challenge Funfair” organised by CLWCF in Lagos to commemorate International Childhood Cancer Day recently, said such wrong assumption has made it difficult to fight childhood cancer in Nigeria, as some parents, believing that children do not have cancer, are fond of taking their children to hospital when it may be too late.
The Bald Challenge is a symbolism of what children go through when they lose their hairs while undergoing chemotherapy treatment for cancer. The event, which was attended by many primary and secondary students, raised several issues concerned childhood cancer and care.
Nwobbi said: “Childhood cancer is a big issue, which is not talked much about. Parents are not willing to hear that children can have cancer. And the parents whose children have cancer are mostly in denial. We have had cases of children whose parents, even when the children are undergoing cancer treatment, will term such cancer another ailment.
“It is important we talk about childhood cancer. Parents are in denial that their children have cancers because childhood cancer is a frightening issue, even among adults. Anyone living with cancer thinks death is imminent. But it is not the same if the child is seen and appropriate treatment is given on time.”
On the challenges of childhood cancer, the paediatrician said: “We do not have a very strong database on cancer in Nigeria. And because people have been in denial of childhood cancer for a long time in Nigeria, it does not even come in. So, we do not have the data we need. But we have started collating data.”
On the way forward, Nwobbi said: “The first thing is identifying and agreeing that we have a problem. Once we have that, then we will involve experts to provide the needed solution.”
Parents are advised to seek immediate medical care when they notice any of the following symptoms in their children: continued, unexplained weight loss; headaches, often with early morning vomiting; increased swelling or persistent pain in bones, joints, back, or legs; lump or mass, especially in the abdomen, neck, chest, pelvis, or armpits; development of excessive bruising, bleeding, or rash; constant infections; a whitish color behind the pupil; nausea which persists or vomiting without nausea.
Other possible symptoms include constant tiredness or noticeable paleness; eye or vision changes which occur suddenly and persist and recurrent or persistent fevers of unknown origin.
Prof. Ifeoma Okoye, a professor of radiology with the University of Nigeria Teaching Hospital (UNTH), Enugu and cancer advocate, said several Nigerians are ignorant about childhood cancer “It is not much as the incidence as the ignorance. People do not know. I will give you an example. I am a Sunday school teacher. I saw a child with a swollen jaw and I was surprised because he was under tension and pain. I asked the boy and the mother of what is going on. They absolutely had no idea. The mother said they thought it was a boil. But by merely looking at him, I knew that he had Burkitt Lymphoma, a completely treatable cancer. I made a referral for them to the hospital and he is doing very well.”
The radiologist called for increased awareness about cancer. “The critical thing is to increase awareness, which CLWCF is trying to do. Parents should come when they see abnormal growth in their children. They should know the signs and symptoms of childhood cancers because they are mostly treatable. Our advice to the entire population, including children, is that when you have anything like a lump, go and see a doctor. Let him look at it; do not assume that it is going to go away.
Parents are in denial that their children have cancers because childhood cancer is a frightening issue, even among adults.
“The major issue why cancer is still a big issue in Nigeria is late detection. Cancer awareness is very low and the acceptance that it is even a disease is not there. Cancer belongs to a class of diseases called non-communicable diseases (NCDs) such as hypertension, diabetes. Yet, if one had been diagnosed of cancer, people would start coming to pay one condolence visits. But if a patient were diagnosed of hypertension, the patient would ask the doctor what should I do? But someone with a cancer diagnosis will go to faith-based organisations (FBOs) and babalawo, just about anything but the right thing. This is because they feel that there is no hope. Why is it that people have this perception? The reason is anybody who has been diagnosed of cancer die. Why are they dying? They are dying because they come to the hospital late.”
Dr Akinsete Adeseye, a paediatrician with the Lagos University Teaching Hospital (LUTH), stated that out-of-pocket payment has worsened the care of childhood cancer in Nigeria, adding that awareness of cancer in childhood is still very low.
Adeseye said: “In terms of awareness about childhood cancer, there is no much awareness for childhood cancer. Like we all know, children are vulnerable beings and the story about cancer in childhood is also a vulnerable story.
If we look at the infrastructure support, we need to make a diagnosis. Presently, in the care of childhood cancer, therapy has gone beyond just getting drugs. We now talk of individualised care. So we take every child as a person. We do not say all that for instance, all children with cancer of the kidney, this is what you use. That is not what is done now. But you take the genetics of that child cancer and look for the therapy that is most appropriate for the child’s care. That is where we want to get. And hopefully, by the end of this year, we should be close to that point.
On how the absence of health insurance for cancer patients affects childhood cancer, Adeseye said: “For our leukemia patients, we are individualising their care. But it is quite enormous in terms of cost for the parents. For example, for us to make a diagnosis in leukemia, the test we do cost N250, 000. Most, if not all our parents, pay out of pockets. Insurance care in Nigeria does not cover cancer care. So, we have cases in the wards of children whose fathers have sold their cars, mothers have closed down their businesses and sold off everything so that they can get money to do investigations.
“In leukemia treatment, we do cytogenetic at N240, 000 and when we start the therapy, the child will need blood and platelets. A bag of platelet is about N20, 000 and the child may need 10. That goes for another N200, 000. So, the cost just keeps escalating that at the end of one admission, parents spend millions of naira. Almost always, there is a provider fatigue. By the first or second admission, most parents do not come back. And when they come, they just come for terminal benefits. The child is almost dead and they come because they want the child to die in the hospital and have the benefit of a death certificate to bury the child.”
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