Kidney patients crumble under financial burden

Grace Wanjiku, a mother of six from Olkeri, Ngong was downcast. Deep in thought, she contemplated her next step as her third born, Martin Ndungu Gakombe, stared in gloom at a transparent folder stashed with kidney test results in his left hand. 

She lifted herself up as if in pain to leave the crowded kidney screening section of the ultra-modern renal transplant unit at Kenyatta National Hospital (KNH).

Mother and son were upbeat that the second attempt to have a kidney transplant for him would bear fruit after the first one backfired, and left her Sh200,000 poorer. 

“I am going back home to wait for God to do his will,” explained the casual worker, a hustle in which the husband is also engaged.

According to John Gikonyo, president of Renal Patient Society of Kenya, a transplant costs around a Sh1 million, with the National Health Insrance Fund taking care of Sh500,000 at KNH, and up to Sh3 million elsewhere.

“A lot of people are not able to pay the pre-transplant evaluation and screening costs. Medication and good diet means extra costs in a lifetime,” he said.

Crucial partnership

In Martin’s case, the young man has other complications whose solutions have to be found before a transplant.

He was not the only one left out at the close of the exercise that attracted Chronic Kidney Disease (CKD) patients from distant counties of Lamu, Marsabit, Mandera, among others.

The screening, carried out under the Interlife Kidney Programme run by the unit jointly with Novartis Spain in partnership with KNH, was re-launched in November after suspension over Covid-19. 

Kidney specialist and head of the ultra-modern renal unit at KNH, Dr John Ngigi said suspension of the programme implemented by the hospital and experts from Novartis Spain for more than a decade crippled services at the ultra-modern unit.

“The rise of non-communicable diseases such as diabetes and hypertension associated with kidney disease dealt a big blow to beneficiaries and kidney transplant at the facility offered at high cost elsewhere,” said Dr Ngigi during the relaunch of the programme last year.

Global statistics three years ago estimated that 10 per cent of the world population has CKD. For Kenya, that translates to four million people suffering from kidney disease and by 2030, the number will have reached 4.8 million.

Reports indicate that chronic kidney diseases are now the sixth fastest growing cause of death that claims 2.4 million lives every year.

Chronic kidney disease, also known as chronic kidney failure, describes the gradual loss of kidney function.

At an advanced stage, dangerous levels of fluid, electrolytes and wastes can build up in the body, causing irreversible damage to the organs, which necessitate dialysis or transplant. 

Acute kidney injury (AKI) – a sudden episode of kidney failure or kidney damage that happens within a few hours or a few days and one of the factors that accelerates CKD — affects more than 13 million people  across the globe and 85 per cent of these cases are found in low and middle-income countries.

It is estimated that approximately 1.7 people die every year due to AKI.

According toTabitha Matekwa, psychology nurse and a member of the team at the renal unit, one of the factors a transplant is turned away is the high cost of screening.

“Others are not transplantable. At times, family members become an obstacle,” she says, adding that myths and misconceptions also derail transplants.

“Many do not differentiate between reproductive health and renal system. There is fear of a donor will become barren,” she explained. 

She conducts counselling sessions before and after dialysis, besides assisting in identifying a donor mostly from a member of a family. Some oppose a transplant out of ignorance.

“Depression due to reduced finances cause friction at the family level,” she added. 

The same is the case for Wangari Waruinge. In the last five years, Wangari has been on a mission to find a donor for her second transplant.

In the first one in 2011, her sister Wanjiku donated her kidney.  

“It failed, but it’s still in my body. Dad has nearly sold the entire piece of land to meet costs I have incurred,” says Wangari.

“This has created bad blood in the family. My brothers are not happy with dad’s support.”

Thrown into spin

Her father has been using Sh9, 500 for each of the eight sessions she needs per month.

In five years since she had the first transplant, the cost has totaled to Sh4,560,000. She also needs Sh30,000 per month for drugs and other conditions.

The prohibitive cost of medical care, the problem of finding a suitable donor, the lack of capacity among medical institutions and policy-related issues are some of the challenges that patients with organ failure face while seeking treatment.

It is against such backdrop that forced Gikonyo to set up the Renal Patient Society of Kenya. 

When he was diagnosed with CKD seven years ago, the 53-year-old father of two was in denial of the condition that damages kidneys and decreases their ability to function, with possibility of developing more complications.

That he required Sh76,000 per month for dialysis or Sh1million for a transplant threw him into a spin. 

“I felt as though the entire world had collapsed on me. It was hard to fathom and what lay ahead for my family scared me,” said Gikonyo.

But counselling, total support by members of his family and a decision by his younger sister to donate a kidney to enable experts at KNH conduct a kidney transplant revived his hopes.

“It had been a five year journey that we had walked together with him,” said Gikonyo’s sister Grace. To her, the exercise was a family project, and encourages other homesteads to emulate.

“Though a personal decision, it is critical to bring other family members on board.

Differences at time cause family disputes,” she added. Gikonyo picked himself up after the transplant and moved on to take part in the formation of the Renal Patients Society of Kenya. 

“I was told we were too few to start such an association at the time. But I told them we should not anticipate a great number of sick people,” said Gikonyo.

He became the president of the platform that lobbies for policy change, lower cost and welfare support for kidney patients.

Formed  in 2018, the society is made up of over 200 members, comprising transplant recipients, their donors and dialysis patients.

“A lot of people are not able to pay the pre-transplant, evaluation and screening costs of Sh200,000,” he said, adding “After transplant, medication is needed to suppress the immune system otherwise the new organ will be rejected.”

Gikonyo who underwent a preemptive transplant – diagnosed before kidney failure – spends time as a volunteer to create awareness on early and regular screening of the condition that at times tears families apart after its demand overwhelms them.

“They resist offering support. ‘You don’t look sick’ is often a repeated reminder to the infected,” he says of the disease associated with hypertension and diabetes.

Currently, five renal machines have been dispatched to counties. 

“At the beginning only KNH had these machines,” he said, taking pride that more hospitals at present are able to conduct transplants.