- Untold miseries of children living with cancer
- How prohibitive treatment costs, substandard facilities send minors to early grave
Little Isa died of an uncommon disease in common hours. Alive, he carried the burden of a cancerous growth on his face. In his final hour, breath expired in his ravaged frame, like the tattered flame of a wicker lamp caught in a rainstorm.
Isa lived a painful life. Lured by the sickly stench of his tumour, flies assaulted him. They hovered around his face, darting back and forth, to sup on pus secreted on his cloying lump.
Besides the pain of his affliction, the six-year-old had to endure the stoic, frightened stares of his mother and caregiver.
The latter lived in morbid dread of losing her son. Sharp cold spikes of fear dug into her bosom from dusk through dawn. And driven by the desire to save his life, Isa’s mother sought help from a renowned traditional ruler in a neighbouring domain to Kaduna, her home state.
But to her chagrin, the latter denied her appeal, and urged her to seek the assistance of her state governor in Kaduna. Following a sustained social media campaign by good Samaritan, George Onmonya Daniel, the St. Jude Children’s Research Hospital in Tennessee, United States of America, (USA) accepted to treat the six-year-old for free.
“All that is currently required are three return tickets for Isa, his mother and an accompanying doctor from Nigeria. By our actions and in actions, we shall be judged, herein and most importantly, hereafter,” he pleaded.
Daniel’s efforts were futile as Isa died waiting for help. It’s two years since Isa’s tragic demise and the fate of cancer sufferers like him, still hangs in the balance.
Emmanuel Adegbola died of Leukemia (cancer of the blood) on August 9, 2016, following a gallant fight against the blood disease. Although his ailment was managed over time, he eventually lost the battle due to lack of platelets in a time of emergency.
Mutairu Osunfowora, five, passed on after a brave battle with cancer on May, 12, 2017. Diagnosed of Burkitt Lymphoma, a non-Hodgkin malignant tumour and cancer that starts in immune cells called B-cells, Osunfowora breathed his last while undergoing medical treatment.
The disease is recognised as the fastest growing human tumour, and is associated with impaired immunity. It is rapidly fatal if left untreated.
Seven-year-old Goodluck Nweke was diagnosed of Medullablastoma, a pediatric malignant primary brain tumour (cancer), originating in the part of the brain that is towards the back and the bottom, on the floor of the skull, in the cerebellum. He died in August 2017.
Then, there was Ayomidipupo Olukoga, a fighter who fought so well to survive a painful bout of Rhabdomyosarcoma, otherwise known as Sarcoma, a cancer of soft tissue (muscle), connective tissue (such as tendon or cartilage), or bone. Rhabdomyosarcoma usually begins in muscles that are attached to bones and that help the body.
Olukoga experienced a very painful ordeal that emptied the purse of his young parents. He died on October 15, 2016
A survivor’s story…Daivyan Obiajunwa
But despite the tragic narrative of most pediatric cancer cases, three-year-old Daivyan Obiajunwa presents an inspiring story.
In July 2015, Daivyan fell ill at the age of one. He was rushed to a renowned hospital on Lagos mainland. According to Matilda, his mother, his symptoms were scary; he was running very high temperature. He vomited and lost appetite too.
After some tests, Daivyan was transferred to the hospital’s headquarters to enjoy supposedly better facilities. There, after some more tests, including a scan and an X-ray, the doctors concluded that he had intestinal obstruction.
“We were told the paediatric surgeon will come in to see us but he never did. We were referred to LASUTH on the instruction of the pediatric surgeon that never got to see my son. We got to LASUTH to do the surgery to remove whatever was obstructing the intestine. At the last minute before the surgery, the surgeon re – examined my son and said he didn’t have intestinal obstruction, that they will refer us back to the hospital that sent us there with advice that they treat sepsis.
“We went back and they started treating sepsis. A few weeks later, we were discharged. Lest I forget, when my son was first admitted, he had a slight lump on the left side of his stomach, we drew the doctors’ attention to it and they said it was nothing to worry about. A few weeks after my son’s discharge, his stomach started growing big, just as his weight loss became more apparent. We got really worried,” said Matilda.
Then a doctor friend advised her to do a Computed Tomography scan also known as CT scan on her child.
“There it was, Nephroblastoma – kidney cancer with metastasis to the lungs. He was already in stage 4,” disclosed Matilda.
The journey there on, was crazy, horrific, and life threatening according to her. With neither information nor experience at the time on childhood cancer, Matilda embarked on a battle to save her infant son.
Though he was taken to Apollo Hospital, Chennai, India, for treatment, he needed the sum of N4 million to balance his medical expenses of N10 million. Daivyan’s mom eventually sought the goodwill of Nigerians via crowdfunding and donations to foot the medical bills of her son.
“My child was misdiagnosed twice because of the negligence of the medical personnel attending to him, which accounted for his ailment getting to stage 4…It took the grace of God for us to go through that journey and come out well.
“Daivyan is doing great. He has done six pre-operative chemotherapy, surgery, radiotherapy and six post-operative chemotherapy; he is doing great because he has God and everyone on his side,” she said.
There is no gainsaying treatment for children living with cancer poses huge financial and emotional challenges to families and the healthcare system in Nigeria. This is so, because they often present too late for effective treatment, it usually portends prolonged hospital stay, varied invasive and non-invasive investigations for diagnosis, unavailability of hi-tech diagnostic facilities in many centers in resource-poor nations, therapeutic issues like unavailability of needed chemotherapy, and where available, high cost and non-affordability by most patients.
Why Nigeria loses children to cancer
Late Isa, Olukoga, Nweke, among others, constitute a fragment of minors that the country loses every year to paediatric cancer.
Many children afflicted with cancer in Nigeria do not survive due to lack of supportive treatment, said Adebola Akinsulirie, Consultant Paediatrician, Oncology/Haematology Unit of the Lagos University Teaching Hospital (LUTH). Akinsulirie said about four or five cases of paediatric cancer are seen monthly at LUTH.
Speaking at a seminar by the Children Living With Cancer Foundation (CLWCF), she said: “And that’s a lot because if you multiply that, that will give you about 50 children in a year. And that is big as far as cancer in children is concerned. To nurse one child with cancer, you need about N2 million on the average in a period of about two years.”
“A lot of them, especially, cancers of the blood will come with very low platelets; which make them susceptible to regular bleeding. And the bleeding doesn’t tell us where it will come from. The child can bleed into the brain and that means death,” she said.
“A simple treatment for that is to get them the part of the blood we call platelets. Unfortunately, the centrifuge machine (blood-separating machine) is not available in most hospitals.
“On the average, a child with low platelet may need up to 50 units of platelets, apart from the fact that the whole blood itself is not available. We take this blood and separate it to its parts in order to get the platelets but the machine is the challenge,” noted Akinsulire.
Findings revealed that most radiation treatment machines are out of use in various parts of the country. For instance, out of the eight radiotherapy machines procured by the Federal Government over 10 years ago and distributed to seven states and the Federal Capital Territory (FCT), Abuja, none is functioning at present.
More worrisome is the fact that most families cannot afford to take their wards to private hospitals for treatment because of the prohibitive cost of such hospitals. Even as it remains unclear how many of about nine Linear Accelerators (LINAC) believed to be owned by private hospitals are working.
Commenting on what has become periodic problems of guaranteeing radiotherapy for a population of about two million people diagnosed with cancer in the country, the Chief Medical Director of Lagos University Teaching Hospital (LUTH), Idi-Araba, Lagos, Prof. Chris Bode, said: “The radiotherapy machine in question has exhausted its lifespan, but we are not relenting in keeping it functional. But we need to understand that out of seven radiotherapy machines procured during former President Olusegun Obasanjo’s administration about 12 years ago under the VAMED hospital equipment refurbishing project, LUTH’s radiotherapy machine is the only one still standing in the whole country … On a normal day, we treat over 100 patients. Ideally LUTH should have about three to six radiotherapy machines but we are left with a 12-year-old machine that has exhausted its lifespan.”
The Minister of Health, Prof. Isaac Adewole, has equally confirmed that Nigeria has too few radiotherapy machines to meet the needs of its population of cancer patients.
“We don’t have enough (machines) to go round but we are working hard to address that gap. There was a cancer machine in the National Hospital for three years and it was in a crate but it was only when this administration came in that we were able to install it,” he said.
The minister, who rued what he called the low level of information and awareness on the debilitating effect of cancer across the country, said that the Federal Government was working hard to cause a significant reduction in the cost of cancer treatment.
Although he put the cost at $2,000 (N734,000) currently in the country, he said it was still a far cry to the $10,000 (N3.7m) it costs to treat cancer in neighbouring Ghana.
Economic cost of paediatric cancer
With less than five per cent of Nigerians currently covered by the National Health Insurance Scheme (NHIS), the disease’s prevalence has an impoverishing effect. This is accentuated by high diagnostic and treatment costs, significant out of pocket payments and lost income in advanced cases.
Cancer medication costs between N270,000 and N300,000 monthly, while chemotherapy or radiotherapy is valued at N200,000 or more; this is apparently beyond the means of poor, struggling families, most of whom eventually resort to crowd funding or alternative treatment.
Against the backdrop of high economic fluctuations and stagnant average income levels, the cost of cancer treatment is rising. For afflicted families, the consequences are dire. While children in affluent countries have a probability of survival of more than 75 percent of all cancers combined, the reverse is the case with a Nigerian child, according to health experts.
Indeed, paediatric cancer is one of the important killers in childhood. “The challenge in treating cancer in Nigeria has to do with our underdevelopment. First, poverty is a problem; people cannot afford two square meals a day and when the child is stricken with cancer, where treatment a day may cost between N20,000 and N30,000, it is a huge burden to the family,” said Professor Edamisan Temiye of the Department of Paediatrics, Faculty of Clinical Sciences, College of Medicine, University of Lagos.
In an ideal setting, a newly diagnosed child with cancer will be met by a group of health workers consisting of paediatricians, oncologists, clinical nurses, a surgeon, pharmacists, anesthetists, dieticians, social workers and sometimes, a radiotherapist.
But child cancer sufferers in Nigeria hardly enjoy such quality of care and facilities. The cost of treatment constitutes a major problem. Poor, struggling families pay out of pocket for health care with household contribution constituting about 63 percent of total cost of health care, while donors, private firms, and the various forms of government cater for the 37 percent.
“Childhood cancer treatment is very expensive. For example, a complete treatment for kidney cancer (nephroblastoma), which lasts for less than six months and is not as costly as cancer of the blood, will cost parents of an affected child nothing less than N1 million. And we will have to monitor the child up to five years before we can say he is okay,” said Temiye.
According to him, “It costs between N7 million and N10 million to cure blood cancer, which lasts two or three years. So, it’s not feasible for an average Nigerian family to afford the cure for cancer. That is one of the reasons why our cure rate is very, very low because there’s a lot of treatment abandonment. The parents come and when they see the enormous cost, they just go away. And the next time you see them, they tell you the child died at home.”
Besides being underreported, childhood cancers are largely unnoticed, statistics are scarce about the disease, treatment is expensive and equipment are virtually non-existent. Over 95 percent cancer actions in the country, for instance, have been focused on adult cancer.
In August 2011, the Federal Ministry of Health inaugurated a technical committee that would draft Nigeria’s position on Non-Communicable Diseases (NCD) for the United Nations High- Level Meeting on NCD which held in September 2011.
While cancer was a recurrent feature in the technical committee’s action plan of reducing NCDs, childhood cancers were ignored. The neglect of childhood cancers, however, transcends government apathy. Medical experts lament that many parents are not totally committed to the treatment of their children living with cancer. “Many parents either totally avoid orthodox hospital treatment and seek spiritual and herbal care to their child’s cancer ailment. This is wrong. Many more parents withdraw their wards from ongoing treatment due to substandard and prohibitive costs of treatment,” argued Ayinde Olusola, a public health worker and cancer caregiver.
The Nation reported in 2013, the tragic case of Chioma Ukanwa, who was reportedly taken to the village to consult herbal healers and was only returned to LUTH when her condition showed no improvements.
On the evening of Friday June 14, 2013, the nine-year-old’s remains were released from the morgue at LUTH, Idi-Araba, Mushin, Lagos mainland, to her parents, Charles and Kate Ukanwa, for burial. She passed on just when she seemed to be beating the disease.
Taming cancer
“Parents should endeavour to seek medical help as soon as they notice any strange rash, lump, outgrowth and irregularities on the bodies of their children,” said Dotun Ayelaboye, a medical doctor.
But while medical expert opinion advocates prompt report of irregular health manifestations on minors, Matilda Obiajunwa, mother of cancer survivor, Daivyan, and founder Daivyan Children Cancer Foundation (DCCF)
advocates greater awareness about the disease.
She urged the government to partner with non-governmental organisations (NGOs) to fund paediatric cancer treatment and raise the awareness level about the disease.
“Health care delivery in our country is in serious crisis, it’s even worse with certain life threatening ailments. Besides our son getting misdiagnosed twice, the facilities for treatment are lacking. Imagine a situation where efficient diagnostic equipment are few and in some cases unavailable, radiotherapy machines are hardly working in spite of their very few numbers, the drugs on the other hand are overly expensive.
“In all, survival rates are low and the enabling environment for management is missing. It is important for government, corporate bodies, specialized international health bodies and funding organizations to pay more attention to health challenges like cancer. This of course will go a long way to change the face of health care delivery and management in Nigeria,” she said.
Photos: Matilda Obiajunwa (DCCF)