The Lord or the doctor, whoever comes first: Probing the state of Kenya’s cancer care

Wednesday January 14 2015

Titus Maina was diagnosed with throat cancer in

Titus Maina was diagnosed with throat cancer in April last year, but he is on a waiting list and cannot be attended to at Kenyatta National Hospital, Kenya’s largest referral hospital, until 2016. PHOTO | MARTIN MUKANGU 

By PAULINE KAIRU
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Through a maze of corridors to the west of Kenyatta National Hospital’s main complex, a turn from the single winding hallway at the large overhead notice with an arrow pointing to ‘Radiotherapy’ leads you into a dimly lit corridor that ends abruptly outside a door that opens into a tiny room.

For a room so full of people, a menacing silence hangs over this space. So profound is the stillness that it seems to radiate waves of unease, uncomfortable unease.

The place is hush, but the faces and body language of the 50 or so men and women sitting on the wooden benches set in rows tell a different story. Their sweeping sense of sadness and grief, which sends mute distress calls that arc, like arrows in a battlefield, through the room, send a message that is louder and clearer than words could ever hope express.

Other than a few outstanding faces that are battle-hardened and so can afford to show a glimmer of hope, the rest are subdued, staring blankly into nothingness, the features of otherwise beautiful and handsome faces transformed into lifeless masks.

DISGRUNTLED PATIENTS

This is the waiting room of the cancer unit at KNH. All these 50 or so patients are lining up for medical attention. Some will make it, but most won’t. And they know it.

“If you were booked for the morning session we can’t treat you today,” a voice bellows from a loudspeaker, breaking the monotonous restiveness of the silence. “Come back tomorrow morning.”

The voice belongs to Dr Peter Kagotho, a radiotherapist at the unit. This is what he does every day, and even though he wishes he could attend to all the patients who have come to see him today, he can’t.

A cancer patient, Mercy Weru, shares an

A cancer patient, Mercy Weru, shares an emotional moment with her son Dickson from her hospital bed at Kenyatta National Hospital in April last year. Mercy died a few days after allowing us to take this photo. PHOTO | FILE

Almost half of the patients rise painfully from their seats to exit the room. Many pass by the patient registry desk manned by Lucy Wangui to ask questions. They are unhappy, and so conversation is held in high tones and rampant gesturing. Most have travelled hundreds of kilometres to be here today and are not sure they will make it tomorrow.

We wait for the disgruntled patients to leave, and then approach Wangui to know why the hospital could not attend to all those helpless and critically ill people.

They are all too accustomed to this, Wangui explains as she reaches for a mountain of files underneath her desk to reveal the date assigned to them.

STATE OF HOPELESSNESS

With an animated, almost desperate gesture, she murmurs: “These are more than 1,000 patients booked for 2016... they do not know that they will have to wait an entire year for them to get treatment.

I cannot tell them that. So I pick their medical cards, put them in here and promise to call them soon. That ‘soon’ never comes for many.

“Most of them curse me because they feel like I am the one blocking their access to the machine. What they do not know is that I am also traumatised. Any normal person would be. Many are the times when, months after sending them away and promising to call them when a slot is available, I eventually call, only to be told the patient was buried a long time ago.”

Titus Maina, his face contorted by a state of hopelessness that is unimaginable, is one of the patients booked for treatment in 2016. Even though he was not meant to be in this waiting room today, when he handed in his card to Wangui after his consultation with the oncologist, he sat patiently among the waiting patients. He looked lost, stranded even. He had refused to leave when she told him to go home and wait for her call.

The 37-year-old hotel attendant from Nakuru is suffering from oesophageal cancer, he tells us. He was diagnosed with the disease in April last year and is now at stage three of the debilitating illness.

WASTING AWAY

For months he has not eaten any solid food. Formerly tipping the scales at 83 kilogrammes, he now weighs less than 65 kilos. He is shedding them too fast to even know the right size of clothes to buy. And KNH, the largest referral hospital in the region, cannot attend to him for — at least — another one year.

Maina needs radiotherapy to kill the cancer cells and stop them from growing and multiplying, and then he can have surgery to remove the tumour.

“I need treatment now. I cannot eat because I cannot swallow. I am only able to take milk. But even that I have to force myself to swallow very painfully,” he says, propping his sinewy hand to support his chin before adding vaguely:

“It will be any minute, I know…. I am waiting for the Lord to take me home. Even if He (God) takes me, I will accept. But I have decided that as I wait, instead of just sitting at home I might as well camp here every day and see if I get lucky.”

That luck is yet to happen as even patients scheduled for treatment are sent back home every day.

Previous expenses on treatment of the disease, which was initially misdiagnosed several times, have already gobbled up all of Maina’s savings, so he now relies on his mother for financial support.

CANCER CENTRE

Furthermore, his family and friends are currently organising a fundraiser for future expenses.

Outside KNH, about a kilometre away from here, a site bearing the notice “Proposed Site for Cancer Centre”, and where more radiotherapy machines are expected to be housed once the structure is ready, is overgrowing with bush. It is four years since the government announced plans to put up a new cancer centre here, but nothing has been done on the land other than putting up that sign.

That is the sad situation of cancer treatment in the country today. Only the small, overused and ageing facility at KNH stands in the way of patients and death, and even that one will not last a lifetime.

Still, many Kenyan cancer patients can only afford radiotherapy treatment at this hospital, which  charges Sh500 per session. Mostly, the patients will need about 30 uninterrupted days or more of the treatment.

Because KNH is the only public health facility offering radiotherapy in the country, it is swamped with patients from all over the country, more often than not begging urgent attention.

The other option is that of private health facilities, but these, though better equipped, are more expensive, charging between Sh5,000 and Sh10,000 per session.

RADIOTHERAPY MACHINES

The KNH centre is, therefore, forced to admit more than its capacity allows. Doctors at the hospital said during the third annual Kenya Society of Haematology and Oncology conference, held in Nairobi towards the end of last year, that the hospital can only handle 30 per cent of all the patients needing treatment right now.

At least 80 per cent of cancer patients need radiotherapy (RT) as part of their treatment, but even efforts to overload the two machines at the hospital cannot help the situation.

“The RT machines we have at KNH should ideally be handling a maximum of 50 patients daily, but we have to overwork them to treat at least  150 patients because of the vast numbers.

“One, an outdated Cobalt, is very old and only caters to 30  patients a day,” says Dr Catherine Nyongesa, a senior oncologist at KNH and chairperson of Kenya Society of Haematology and Oncology (Kesho), which brings together the Ministry of Health and hospitals and doctors involved in the management of cancer.

“We have more than 1,000 patients waiting in the queue to be treated in 2016 because they cannot afford treatment outside KNH. Of the 70 per cent that can’t access medical care at the hospitals, most are dying painful deaths at home while those who can afford seek treatment abroad and in local private facilitates.”

To operate appropriately, KNH would need about 10 machines but it only has two, explains the senior specialist oncologist at KNH.

SITUATION 'HOPELESS'

Moi Teaching and Referral Hospital in Eldoret, the only other public hospital with cancer treatment capacity, is scheduled to get its RT unit in March this year, according to resident oncologist Dr Fredrick Chite.

“There is tremendous pressure on the existing facilities to handle these huge numbers effectively. The situation for Kenyan patients is dire and hopeless. Patients are sitting at KNH and some of them are just giving up hope. Most of the patients will only end up getting palliative and not curative treatment,” she adds.

“At the cancer treatment centre at KNH there are 70 to 100 patients seated daily, most of them waiting to see a cancer specialist. It is a picture of gloom, sadness and despair.

“Unfortunately, because of the lack or facilities, those who would have been lucky to be treated at stage two of the disease will be at  stage four (last stage of cancer) by the time they are scheduled for radiotherapy,” says Dr Najmu Adamali, a radiologist at Cancer Care Kenya and tutor at the KNH radiology centre.

According to Anne Korir, the head of Nairobi Cancer registry, about 41,000 new patients join her list every year. That is alarming, but what is even more disturbing is the fact that two thirds of these patients die within 12 months.

ONE BIG MISTAKE

Cancer is now the number three cause of death in Kenya, after infectious and cardiovascular diseases. It is already the number one killer at KNH, according to Prof Othieno Abinya, a medical  oncologist and professor of medicine at the University of Nairobi.

The outlook is bad, the statistics shocking. But things are about to get worse, at least according to the World Health Organisation, which, in its cancer update in November last year, predicted that the number of new cases will rise by about 70 per cent over the next two decades. That will make an already bad situation worse, especially for Kenya, which is already grappling with a host of other lifestyle diseases.

Compounding the lack of machines in the country is lack of trained personnel as there are — according to various reports which we could not confirm — only six radiation oncologists, six medical oncologists and two oncological gynaecologists in the country. The rest, about 10 of them, are physicists and paramedics in the field.

“It is this absence of qualified practitioners that has caused even more deaths because in most cases before patients are correctly diagnosed with cancer they have  been misdiagnosed several times and put on medication, sometimes even for two years,” says Dr Fredrick Chite.

“We may have all this fancy equipment (mostly in private hospitals), but the one very big mistake that we have made is that we have spent billions of shillings in construction and equipment for cancer units but we have not invested in manpower. And we are paying a huge price for this,” says Dr Adamali, the radiologist at Cancer Care Kenya.

CANCER SPECIALISTS

Even though the urgency of the matter should have been recognised about eight years ago when cancer emerged as the next burden for the health care system, according to Dr Adamali, little is being done to have the right people attending to patients.

Most medical training institutions in Kenya, for instance, do not train in the area. University of Nairobi, Aga Khan University Hospital (Nairobi) and the Moi Teaching and Referral Hospital are only just developing curriculums for cancer specialist doctors.

“We are going to start training oncologists at the University of Nairobi as soon as we get the necessary licences and permits,” says Prof Abinya.

“The curriculum is at the advanced stages of completion and the university might be able to start training by 2016.”

Moi University’s School of Medicine, in collaboration with the Moi Teaching and Referral Hospital, has been involved in middle-level training focused on producing clinical officers for a higher diploma in oncology for the past one year and has an upcoming nursing specialisation programme.

The two have also developed a curriculum for oncology nursing that has been sent to the Nursing Council for approval and is likely to be rolled out in March this year.

FALLING SHORT

Dr Adamali says that, since KNH sponsored the first oncologist and radiologist for studies in the UK in 1973, there has not been much effort channelled towards increasing the numbers in this area of medicine.

Ministry of Health Head of Oncology Dr Izaq Odongo, who admits that the government has fallen short in many aspects as far as the epidemic is concerned, says the ministry is well aware of the many challenges facing the country.

“The Director of Medical services, Dr Nicholas Muraguri, has written to several embassies for training opportunities for cancer specialists and we are awaiting responses,” he says.

And the government, he promises, plans to set up other diagnostic infrastructure as well as cancer-care centres in Nyeri, Kisumu and Mombasa with assistance from the International Atomic Energy Agency (IAEA), in a Sh3.4 billion annual development strategy to be staggered over the next 10 years.

Those are great plans, but Mr Titus Maina, the man who cannot swallow food because of throat cancer, and whom the good doctors at KNH have told to go back home and wait for one year before they can attend to him, just wishes someone would shine a light down his oesophagus today.