He lost his brave fight’. If anyone says these words after my death, I will curse them,” says Peter Mwashi Ndung’u, a labourer.
“I have not lost to cancer. I have been failed by a system that has made it unable for me to pay for treatment. I blame my financial situation. I would not be putting on muffins and hoodies to cover my deformed face if I had the money.”
Ndung’u’s family takes each day at a time.Ndung’u’s face began to swell two years ago. He assumed it was a toothache.After using herbs without any success, Ndung’u went to a dentist at Kiara Hospital. A week later, the pain was back.
A numb lip and chin sent him to Kianjogu Hospital where Ndung’u was told that he had a growth in one of his teeth and was referred to a dentist.Having two of his teeth removed, and taking herbs still did not help. He was referred to another doctor.
Because Ndung’u did not have the money, he went home. Two weeks later, with much more pain, he returned to the hospital.He was then referred to Kenyatta National Hospital (KNH) for a scan.
At KNH, the doctor prescribed biopsy. A tissue was taken from the growth for examination.Two weeks later in December 2020 when the results were out, Ndung’u was found to have cancer of the mandible.
Mandibular cancer originates from the gums and lower jaw. It at times starts in the jawbone, gums, lips, cheek or tongue, spreading into the bone.
The father of four later found out that his aggressive cancer was at stage four, and that it had gone to the brain. The faster he began treatment the better, he was informed.He was sent for chest and abdomen scans as doctors wanted to know the extent of the disease.
Ndung’u was also asked to do a blood wax test to enable doctors draw a programme for his treatment.One such scan at KNH costs Sh8,000 while the blood wax test is Sh2,400.
For one year now, after paying the Sh7,000 for the biopsy test, the family has not managed to raise the Sh20,000 needed for the scans for Ndung’u to start therapy.
“You will not believe it if I tell you how we struggled to get the money for the first test. I really want him to be okay but we do not have the money,” said Ndung’u’s elder sister Rose Njoki.
As family members look for money and wait for well-wishers to come to their rescue, Ndung’u’s cancer is becoming even more aggressive.
The tumour has consumed his right cheekbone, eye and palate. The man’s face has caved in, with the left eye sunk. He now sees double images.The cancer has since compromised Ndung’u’s speech, eating, eye and ear functions.
He cannot chew solid food, surviving on porridge and milk; meals that the family still struggles to put on the table.Ndung’u’s left ear and right eye are completely damaged.There is a hole between his mouth and nose, interfering with his eating and talking.
Ndung’u cannot hear or smell anything. The nose is blocked and one of his ears is completely damaged.
The family’s only hope is that an individual or organisation will come to Ndung’u’s aid before it is too late.To manage the growing pain, Ndung’u constantly takes painkillers.
“I cannot tell the number of times in a day that we give him Mara Moja tablets. I cannot even sleep,” Njoki said.
The family contacted the National Health Insurance Fund (NHIF) but was told to pay Sh1,500 upfront for three months and Sh6,000 annual subscription, given that Ndung’u had not remitted the money for a while.
“The whole family wakes up to keep Ndung’u company up when he is in pain,” his wife Esther Muthoni said.
“I placed the request to the NHIF but which was declined. I was told I needed to top up the premiums up to 2022. We just do not have the money.”
Lately, patients seeking minor and major surgical operations, diagnostic tests, chemotherapy and radiotherapy have been made to pay two-year premiums in advance if the national insurer is to settle their hospital bills.
Those unable to meet these conditions have been turned away, forcing them to make out-of-pocket payments.
“Please help me get treatment. I just want to live a little longer,” Ndung’u said.
Read:Broken machines, no drugs for cancer patients at KNH
Ms Elsie Gaitugi, palliative care nurse at Nairobi Hospital, told the Saturday Nation that Ndung’u cannot feed well because of his condition.
He feeds on porridge the whole day, which is not nutritious enough to add the weight needed for starting treatment.
“He needs a feeding tube so that he can have other nutritious foods. Unfortunately, the family cannot even afford a decent meal. They are struggling financially,” she said.
When the Saturday Nation took the scans requests for booking at KNH for Ndung’u to start treatment, we were told that the earliest any patient can be attended to is late July.
“We are fully engaged until July. The ones we are attending to are the emergency cases. We cannot have any new patients before that time. We’re sorry,” the nurse in charge of the centre said.
The Saturday Nation then went round looking for space at any of the private hospitals that can perform the scans in the shortest time possible.
Nairobi West Hospital agreed to our request.
For all the scans – chest and abdomen – blood wax tests and a drug given to the patient before the procedure, the Saturday Nation paid Sh16,835.
Ndung’u has since had his test and is waiting for the results, before beginning therapy.
The Saturday Nation also paid Sh6,000 for Ndung’u’s NHIF cover for the whole year.
Most cancer patients we interviewed across the country cannot start treatment or complete it due to costs.
They are either made to pay for other sessions after doing half the treatment or are referred to private hospitals when a machine fails at a public institution.
The patients and their families pay more for the same treatment when they go to private hospitals.
Early this month, the Saturday Nation placed a call requesting cancer patients who have not completed or started their treatment to tell their stories.
We received more than 50 calls from across the country in less than half an hour.
Most callers requested to be supported in their treatment.It was 11am when Dickson Otieno, a rectal cancer patient, made the first call.
“All I am left with are my wife and four children. Had it been possible, I would have used them as collateral to get money for treatment and get them back on recovery. This is how desperate I am,” the second-hand clothes seller said.
It has not been easy for Otieno in the last two years.
Read:New drug for prostate cancer patients approved
He was initially diagnosed with haemorrhoids, which he treated for six months, not knowing a much larger problem lay in wait. There was no improvement.
He was referred to Bungoma West Hospital.
With abdominal pains, Otieno remained at Bungoma West Hospital for two months.Scans later showed Otieno’s rectum was enlarged. Samples were taken for biopsy at Webuye District Hospital.
Two weeks later, the results were out, showing Otieno had rectum cancer at stage two. A booking for pelvic and abdomen scanning was then made.The disease had spread to the stomach.Otieno was advised to plan for treatment immediately.
“My family had to sell all we had, including our only cow and a piece of land that my husband had bought, to pay for tests and radiotherapy at Moi Teaching and Referral Hospital (MTRH),” Otieno’s wife said.
The doctors said he had to go for 25 radiotherapy sessions. Otieno has had 20 sessions, all covered by the NHIF.
With five left, Otieno could hardly raise the full Sh3,600 needed per session.
It is a struggle even getting Sh1,000 for bus fare from Bungoma county to Uasin Gishu.He is being housed by a family friend in Eldoret.
“By the grace of God, I have done three sessions. One was paid by a friend and two by my church members. I hope well-wishers will come to my rescue,” Otieno said.
The Saturday Nation paid for his remaining two radiotherapy sessions at MTRH. The Saturday Nation paid for 20 radiotherapy sessions at public and private hospitals across the country.
For the same treatment, public hospitals – including KNH and MTRH– charge Sh3,600 while the cost at private institutions ranges betweenSh6,000 and Sh10,000, too high a cost for an ordinary family.
Machines at public hospitals are never in working condition on many occasions.Poor patients have to dig deeper into their pockets to access treatment at private hospitals, while those unable skip treatment altogether.
Most Kenyan hospitals are poorly equipped to provide cancer treatment. Charges at hospitals with the machines are usually extremely high.
Only KNH, MTRH and Kenyatta University Teaching, Referral and Research Hospital (KUTRRH) have comprehensive cancer treatment facilities.
But the long wait, high costs and late diagnosis make it difficult for patients to access therapy on time.
Cancer patients from all over Kenya flock the three overwhelmed hospitals for affordable radiotherapy and chemotherapy.
Unfortunately, they at times can be made to wait for up to a year for an appointment.The KUTRRH is the latest to establish East Africa’s first-ever public comprehensive cancer diagnostics and treatment centre that focuses on early diagnosis, treatment and management of the illness.
Read:Despair as half of KNH cancer machines break down
However, the services are still not accessible to thousands of patients.Every private hospital in Kenya has own rates for cancer treatment.
The long delays due to lack of accessible treatment at public hospitals mean many patients’ conditions keep worsening.
Public hospitals are also struggling with the few specialists who also have attend to patients at private health institutions.
According to data from the Kenya Medical Practitioners and Dentists Council, the country has less than 50 oncologists for a population of 54 million – a 1:540,000 ratio.
In the United States and China, the ration is 1:150 to the Journal of Global Oncology.
With less than 12 (four public) tertiary or comprehensive cancer centres – nearly all in Nairobi – patients outside large towns have very few treatment options.
This means many Kenyans are missing out on primary cancer screening, patient education and awareness programmes or institutions.
Cancer has in recent years robbed Kenya of high-profile people, including Safaricom Chief Executive Bob Collymore Bomet Governor Joyce Laboso and Kibra MP Ken Okoth.
Kenyans at the time loudly called on the government to declare the disease a national disaster.
Cancer kills around 30,000 people in Kenya every year, while 47,000 are diagnosed with the disease in the same period.
Like other developing countries, the increasing number of cancer patients is putting additional strain on health services.
Cancer is the second leading cause of deaths after non-communicable diseases.In 2020, some 8.3 per cent of the deaths in Kenya were from cancer. Cancer has also been the leading killer disease among those aged 50-59, accounting for 12.7 per cent of the deaths.
The illness led to more deaths in females than males at 9.3 and 7.6 per cent respectively.
It affects Kenyans of all ages and socio-economic backgrounds but has a disproportionate impact on the most vulnerable.
Cervical cancer makes up the largest portion of the cases (nearly 12 per cent), followed by breast, Kaposi’s sarcoma, oesophageal and prostate cancers.
In many low and middle-income countries, including Kenya, most cancer cases are diagnosed at an advanced stage when treatment options are limited.
Families make huge sacrifices, often with poor results. It is estimated that 70 to 80 per cent of cancer cases diagnosed in Kenya are at advanced stages, with high rates of misdiagnosis and inadequate screening hindering early detection.
“Diagnosis of cancer can be devastating but when made early, it can be managed and a lot prevented,” said Catherine Naliaka Nyongesa Watta, a physician and radiation oncologist.
“It is always advisable to seek medical attention immediately you start feeling unwell.”
Read:Early diagnosis of pancreatic cancer on the way, shows study
Kenya carries the regional cancer burden too, being a neighbour of countries like South Sudan, which does not have even a single oncologist, and where the only available treatment is surgery.
Kenyatta Referral Hospital, which has three radiotherapy machines, also serves patients from Uganda, Burundi, Rwanda and South Sudan.This makes waiting times even longer.
In Kenya itself, people often have to travel hundreds of kilometres to access cancer services at referral hospitals.
Since the beginning of the year, cancer patients attached to KNH have been staring at a crisis.
Three of its machines broke down with more than 20 different drugs in shortage in the last three months, leaving thousands struggling with the spiralling cost of treatment at private hospitals.
The Brachytherapy machine at KNH broke down three years ago. It is the only public hospital in Kenya with the machine. The service is Sh15,000 per session while private hospitals charge Sh45,000.
For three years, Nduku Wambua has been waiting for the Brachytherapy machine at KNH to be repaired because she does not have the money private hospitals charge. KNH usually refers such patients to Nairobi Hospital.
Brachytherapy is a type of internal therapy in which seeds, ribbons or capsules that contain a radiation source are placed in or near the tumour.
It treats specific parts of the body. It is often used in treating cancers of the head, neck, breast, cervix, prostate and eye.
Ms Wambua is a representation of thousands of Kenyans who have been failed by the frequent breakdowns of the machine. With no money, they cling to the hope of the gadget being repaired soon.
Wambua, Ndung’u, Otieno and more than 20 families that the Saturday Nation paid for treatment cannot cope with the high cancer cost of treatment.
When the Saturday Nation caught up with Wambua, she was not able to walk. Nursing her wound after several radiotherapy sessions failed to stop the growth of cancer cells in her cervix.
The doctors later recommended Brachytherapy for faster burning of the cells.She was referred to Nairobi Hospital for the service.
Ms Wambua, who hails from Kakamega county, is being housed by a friend in Nairobi.She opted for a friend’s house as she could not pay for accommodation.
“I smell. Don’t even come near me my daughter. The wound is progressing and I have not been treated yet. I am just hoping that the machines at KNH will begin working,” she said.
Ms Wambua requested that we pay for her first session as she waits for money from church members who pledged to raise funds.
“The money I have been using since I was diagnosed with cervical cancer has been from well-wishers,” the greengrocer said.
“Had it not been for them, I would be dead. God has a reason for keeping me alive.”
The Saturday Nation paid Sh40,000 for her Brachytherapy session at Nairobi Hospital.
She is yet to go for the second therapy, hoping for another well-wisher.
“I live one day at a time,” Ms Wambua said.
Dr Omar Abdihamid, a consultant clinical oncologist, says the gaps in cancer care in Kenya are compounded by the devastating double-anxieties of the disease, high cost and lack of medical cover. He says the challenges are multifold.
First, patient education and poor health-seeking behaviour far often contribute to late diagnosis.The cost of care causes severe financial toxicity but the existing inequity costs lives.
“Ours is not a publicly funded healthcare system. The able few pay hefty out-of-pocket costs or through health insurance, leading to the ever-burgeoning medical tourism to India, South Africa and elsewhere,” Dr Abdihamid said.
In the spirit of Africa’s quintessential, extensive and closely knit family ties and camaraderie, cancer diagnosis is a household affair.
With a family and friends’ support system, fundraising to offset treatment costs and avert asset liquidation is common.
Despite progress like the recently launched Cancer Action Plan, for most Kenyans primary cancer care is not where it should be.
“We need a feasible plan for cancer care. One that wraps around primary prevention; robust community-based services; employment and training more oncology professionals; establishing not only a national but regional cancer task force; cushioning cancer cost against patients, and averting financial toxicity,” Dr Abdihamid added.
“It’s time to revolutionise cancer care in Kenya. It’s time to be fair to patients and our nation.”
According to the Institute of Economic Affairs, for every Sh100 that a Kenyan spends on health, Sh28 is out-of-pocket.
Out-of-pocket payments on health introduce a financial burden or risk to the household. Kenya’s out-of-pocket ratio is above the average of Uganda, Tanzania, South Africa and Rwanda by 4.1 percent.
“In the advent of increased non-communicable diseases such as cancer that require long time treatment, reduction of the out-of-pocket payments is important in sustaining affordability and access to services,” says the IEA in its 2020 analysis.