Their tiny bodies can barely survive the harsh treatment. Eventually, eight out of 10 succumb within five years.
But the two that survive must pay a price for the rest of their lives.
That is the reality of children with cancer in Kenya.
In 2019, Dr Gilbert Olbara, a young paediatrician practising in Eldoret, set out to find out why most children with cancer were not making it past five years after falling diagnosis.
Eight out of ten children diagnosed with cancer survive the five years in developing countries, but in Kenya, only two do.
What Dr Olbara and his colleagues found was a dark, hidden caste system that largely determines who dies and who survives.
It had to do with money – if one has money to pay for treatment or insurance, or not.
“Treatment results differed significantly between patients with different health insurance status at diagnosis,” he says.
Perhaps due to debilitating hospital bills, 37 per cent of uninsured patients abandoned treatment, compared to 28 per cent of the insured.
He says 37 per cent of insured patients had event-free survival, while only 24 per cent of uninsured patients had.
Olbara and his colleagues published the surprising results in the SpringerLink journal, and the results have continued to draw attention.
“Children without health insurance had significantly lower chance of event-free survival,” he says.
Families of those who survive have many things to worry about. The children face learning problems, poor growth and developmental delays resulting from the harsh chemotherapy when they are young.
ABANDONED CHILD
Another medic, Dr Festus Njuguna, of Moi Teaching and Referral Hospital, also revealed a caste system where children without insurance die more.
Njuguna, Dr Sandra Langat, and paediatric oncologists Gertjan Kaspers and Saskia Mostert from the Amsterdam University Medical Center documented the life of Tom, a Kenyan boy born in 2014 to HIV-positive parents, who was diagnosed with HIV at six months.
The boy’s mother abandoned him at his grandmother’s home when he was only two years, without revealing her HIV status and that of the boy.
“My husband and I had warned her against getting together with the boy’s father since we knew about his HIV status, but she did not listen. I suspect she was afraid to face us when she got infected,” the grandmother later said.
The grandmother found out about Tom’s HIV status when a nurse from the local clinic was looking for him because he had been lost to follow-up for a year – since his mother abandoned him.
Patients are considered lost to follow up after failure to return to hospital for more than four weeks for scheduled appointments.
“I felt ashamed when I found out that my daughter and grandson were infected,’’ the grandmother said.
He was put on ARVs again. The drugs are free but Tom would need about Sh120 for blood test, once every three months.
His mother died of HIV-related complications in 2016, and the biological father, who was separated from Tom’s mother, committed suicide.
Tom was three years old when he was hit by a motorbike and rushed to a hospital, where the doctor noticed a swelling in his groin, the authors reported in the BMJ Case Reports journal in 2020.
He was referred to Moi Teaching and Referral Hospital, where a diagnosis of Burkitt lymphoma, an extremely aggressive type of B-cell non-Hodgkin’s lymphoma, was confirmed.
This type of cancer is not only associated with chronic malaria but also with Epstein-Barr virus and HIV infection.
During admission, hospital staff advised the grandmother to get health insurance, as it would cover the inpatient and outpatient treatment costs of her nuclear family, including the grandson. The grandmother subsequently applied for the national health insurance fund card.
However, no one mentioned to her that health insurance would only cover her grandson’s treatment if she had legal guardianship, which she did not have, the researchers report, under the title Influence of health insurance status on childhood cancer treatment outcomes in Kenya.
The family income nose-dived during the boy's treatment. The grandmother said she was unable to sell farm produce, her only source of income because she had to stay at the hospital.
After the boy had received prephase and the first course of chemotherapy, his health deteriorated. He developed diarrhoea and vomiting and died at the age of three years.
It is at this point the grandmother learnt that her health insurance could not cover her grandson’s outstanding hospital bills because she did not have legal guardianship.
“I was very afraid that my grandson’s body would not be released to us for burial,” she said, and was right.
It was detained for about a week until the hospital waiver committee met and agreed to waive the costs.
But when the family arrived at the mortuary to collect the body for burial they were shocked to learn that while the hospital bill had been waived, the mortuary fee was not.
This fee included Sh6,100 for the first week of detention, plus an additional Sh1,000 for subsequent extra days the corpse was detained.
“The practice is very unfair and cruel. I felt guilty towards my grandson, who was denied a decent funeral because of our poverty,” the grandmother said.
The extended family raised the money, after which Tom’s body was released for burial, 10 days after his death.
POVERTY FACTOR
In sub-Saharan Africa, the commonest types of childhood cancers are non-Hodgkins lymphoma, which starts in the immune system, kidney cancer and cancer of the bone marrow, says Dr Festus Njuguna.
He says Kenya does not have a national childhood cancer registry. It relies on a hospital based registries. About 2,500 children in Kenya develop cancer every year, as calculated from a global estimate.
He says the most common reasons given for discontinuing cancer treatment is financial difficulties (46 per cent of all patients), lack of health insurance (27 per cent) and transport difficulties (23 per cent).
“These are all related to poverty,” he said.
Dr Njuguna says the government should enrol more Kenyans on NHIF so that all children diagnosed with cancer can seek treatment in public health facilities.
Currently, some of the benefits members receive include payment for chemotherapy and radiotherapy sessions, especially the needy patients.
Kenyatta National Hospital has two wards that give treatment and supportive care to children with cancer.
The first is ward 1E which hosts children between the ages of 5 five years and 12 years but who stay without their parents.
The second, Ward 3D is located on the third floor and hosts children from birth to 13 years who are staying with their parents.
Seline Sein, an oncology nurse specialist at KNH says the two wards are currently home to around 50 children with cancer but on average they attend to more than 100 children per month.
“That tells us that the problem of cancer is prevalent,” she says.
Leukemia is the most common type of childhood cancer recorded at the facility.
Irene Nzamu, a paediatric haematologist oncologist at the same facility notes that the facility takes care of children with cancer and blood disorders.
“We have come to realise that apart from the poor survival that our children with cancer are having we have also seen that they are referred very late. By the time they get to KNH the children are already stage 4 and that means the cancer has already spread,” she says.
Many cases of childhood cancers are missed by medics. Tis has been attributed to the fact that the early warning signs present like headache, hence not given the much attention they deserve.
She however notes that unlike adult cancers which are sometimes associated with lifestyle childhood cancers either genetic or something that had a predisposing factor which the children could not control.
“The aim is not to try and screen the aim is to diagnose early treat early and improve their survival,” she adds.
In an effort to help curb the rising burden of childhood cancers in the country, the ministry of health has come up with various policies that outline the strategies to be taken.
For instance, the Kenya cancer policy 2019 and the national cancer control strategy 2017 to 2022 which outlines what Kenya should do as a country to combat the burden of childhood cancer.
“We have come to realise that apart from the poor survival that our children with cancer are having we have also seen that they are referred very late. By the time they get to KNH the children are already stage 4 and that means the cancer has already spread,” she says.
Many cases of childhood cancers are missed by medics. Tis has been attributed to the fact that the early warning signs present like headache, hence not given the much attention they deserve.
She however notes that unlike adult cancers which are sometimes associated with lifestyle childhood cancers either genetic or something that had a predisposing factor which the children could not control.
“The aim is not to try and screen the aim is to diagnose early treat early and improve their survival,” she adds.
In an effort to help curb the rising burden of childhood cancers in the country, the ministry of health has come up with various policies that outline the strategies to be taken.
For instance, the Kenya cancer policy 2019 and the national cancer control strategy 2017 to 2022 which outlines what Kenya should do as a country to combat the burden of childhood cancer.
HERBAL TREATMENT
The Star also spoke to Dr Catherine Muendo, a pediatric oncologist at KNH. She says despite diagnosis in some children happening early enough, some parents opt to seek for alternative, non-medical options such as herbalists as opposed to conventional treatment.
This, she explains, is due to the deep-rooted beliefs, myths and misconceptions about cancer in communities.
As a result, such children are brought to the hospital late leading to poor treatment and survival outcomes.
“There are cultures that don’t believe in seeking healthcare. They believe in doing traditional medicinal rituals and that affects the impact of care for cancer children,” she said.
“In our community, we cannot deny there are a lot of traditional herbalists, a lot of spirituality where there are those who believe if they go to church and pray for the patient he will get healed but we know at the end of the day that does not work,” she adds.
According to Muendo, a child who has cancer and is treated through exposure to radiation and prior chemotherapy is at a higher risk of getting another cancer in future.
Dr Geoffrey Mutuma, the proprietor of Zambezi Hospital in Nairobi’s South C estate, says that most patients are also brought to hospital late, leading to poor outcomes.
He says 80 per cent of the patients come when they are in stage four.
“And there are several factors for this. The first one is that awareness is quite low, so people are not aware.”
Dr Mutuma adds that another factor contributing to late diagnosis is because cancer is not painful in the early stages.
"And you can stay with cancer for almost 10 years without having any signs and symptoms. And when people come to hospital, when they have signs and symptoms of cancer, it means that that cancer is already in stage four.”
At this stage, Dr Mutuma said cancer is difficult to treat.
"So, what's very important is to create awareness, people to know that cancer is very common. And also what's very important, is to go for screening. We normally encourage people to go for screening.”
SCREENING GUIDELINES
The head of the National cancer control programme Dr Mary Nyangasi said there are national cancer screening guidelines.
They have a chapter that seeks to address childhood cancer and outlines the strategies to be put in place to detect eye cancer early enough and treat according to the guidelines given.
Data from the ministry shows that close to 3,000 children get diagnosed with pediatric cancer in the country each year.
More than 80 per cent come when the cancer is at the final stage thus minimising their survival chances due to poor treatment outcomes.
According to data, 80 per cent of childhood cancers are curable in developed countries but the success rate drops to below 30 per cent in low and middle-income countries, including Kenya.
Low awareness levels among parents and healthcare workers to identify some of the early warning signs and late-stage presentation are some of the factors.
"We want members of the public to bring their children early enough in the hospital for early diagnosis and treatment. What we have seen is that early diagnosis can lead to 80 per cent of cancer being treated,” Nyangasi said.
Already, the ministry of Health has made a proposal that seeks to lower the cost of treatment for childhood cancer patients in the country.
The new advisory seeks to ensure that National Health Insurance Fund (NHIF) provides access treatment beyond the normal six sessions as per the current provision by NHIF.
The Childhood Cancer Advisory Document was developed by the ministry in consultation from health experts after it emerged that treatment for childhood cancers takes time hence might need more support.
This story was produced by the Star Publications in partnership with WAN-IFRA Women in News Social Impact Reporting Initiative