Kenya explores policy on cadaver organ harvesting as kidney disease ravages families
By Emily Chebet
It is a chilly and rainy morning in the capital Nairobi, Everline Alivisa must brace for the cold weather to attend dialysis, a session that nothing or no one can stop. The 38 year old mother of three is battling end-stage kidney disease after she was diagnosed with kidney failure 7years ago. She has only two options, dialysis or a kidney transplant.
The trips to hospital for dialysis sessions is a routine that Everline has familiarized herself with, she must be on dialysis for four hours twice a week.
Kidney disease comes with multiple challenges like swollen legs and back pains that Everline is battling, almost rendering her immobile.
Everline is supported by her husband to get into the car but it is a long struggle with the swollen legs she cannot lift herself to board the car. The husband places a stone for her to step on as he supported her into the car.
After a long struggle, Everline is at the hospital for her dialysis session. She must be supported out of the car again before she is wheeled to the dialysis room. After five hours, it is another uphill task getting her back to her house in Lucky Summer, Kasarani, where she will rest for only a day before going back for the dialysis session.
It is approximated that about 12,000 people have some form of kidney disease in Kenya and only half of these are on dialysis. From 2012 to 2021, the country has managed to do only 780 kidney transplants, which is way below the demand.
“The process of transplantation is guided by the law and at the moment the law gives guidelines and we can only live related donation and that is where we are at the moment so we have had a challenge of late because families are becoming smaller and smaller, long time we could get a family of 10-15 children at the moment the average is between 2-3 so the relatives are becoming smaller and smaller, DR. Patrick Mbugua, Head of Renal Unit at KNH notes.
Dr. Maurice Wakwabubi, the CEO of Kenya Tissue and Transplant Authority (KTTA) notes that Kenya has enough manpower to handle kidney diseases.
“The country has actually trained very many doctors, nurses and people around this area of kidney transplants but I think the problem that we are facing now is where do we get the organs?”
At the moment, Kenya is dependent on living-donor donations from immediate family members. Kenya’s policy on donation, transfusion and transplant of medical productsthat is in the pipeline will go a long way in increasing access to organs for patients in need.
Cadaver Kidney transplant is a process where a kidney from someone who has recently died is removed with consent of the family or a prior consent from a deceased.
This process that happens when a patient has been assessed by doctors and pronounced brain dead, meaning the person can only live on life support.
In the UK, the law states that ‘all adults in England are considered as having agreed to donate their organs when they die unless they record a decision not to donate or are in one of the excluded groups in what is known as opt out system of organ donation.
According to the National Institute of Health, as of September 11, 2020, 4401 people were waiting for an organ in the UK.
A systematic review carried out in 2019, comparing the consent rates of opt-out organ donation countries versus opt-in countries, showed that the opt-out consent increased the deceased donation rate by 21–76% over 5–14 years, and deceased transplantation rate was increased by 38–83% over 11–13 years
In Kenya, the Ministry of Health, through the department of National Blood Transfusion, Tissue and Human Organ Service, initiated the process of developing a National policy on product donation, transfusion, and transplant in 2021, but it is yet to be completed to help thousands in need of Kidneys and other organs.
Everline, who has been waiting for a kidney transplant for seven years, has had three potential donors from her family, two were disqualified after several tests, and one who was her match chickened out at the last minute, this she says might be due to myths and cultural issues associated with organ donation in the country . She was left to bear dialysis and no other hope other than traveling outside the country for help.
“I had to talk to my parents and siblings because it is a rule in Kenya that the only person to give you a kidney is from your family, after that discussion one of my younger brother by then she was 23/24 years he agreed in 2017 after dialyzing for one and a half years but we didn’t match so he was dropped. In 2018 I picked another brother, we went through all the tests until stage 6 but he developed high blood pressure again he was dropped, then my younger sister in 2022 everything was compatible we were okay until the day we were going to be admitted at the hospital for the procedure, she never showed up when I came back to the house she had left and she blocked me. I really felt bad am still on this journey you know my mind was set soon I will be reforming from my normal life, I was depressed for 3 months I was not talking to anybody,” Everline notes.
Dr. Wakwabubi notes that relying only on living donors is not enough.
“You cannot be able to sustain that is why you cannot be able to help the population so they entered into what we call deceased organ donation US is leading followed by spain whereby when you die you can be able to say that my organs i can be able to donate to somebody as you die you gift somebody with a life these countries have done that and they have done well,” he says.
According to medics, patients on Kidney transplantation live a better life than patients on chronic dialysis. Stakeholders in the health sector are calling on the government to follow the first-world countries on cadaver organ harvesting to address the shortage and save Kenyans like Everline from the agony.
“If I get money or i get help from friends and family i can go to india they harvest the kidneys from accident people or maybe somebody wrote a will,” says the patient.
Dr. Wakwabubi notes that KTTA has come up with a policy on the same.
“ We have a bill which is now ready many countries outside they are ready to partner with us to help us in terms of technology transfers in terms of helping us to set up these programs,” the expert notes.
Dr. Mbugua, the Head of Renal Unit at KNH says there is a committee sitting looking at the guidelines.
“This course is something that needs to be looked at very critically as far as the law is concerned. Because we are talking about patients who have had probably very bad accidentS, they are brain dead but their organs are perfect,” he explains.
“I really want to do this transplant thing, I really want to do it they should change this law, they should change it to anybody and have the awareness to people anybody can give a kidney and survive with one yaani Kenyans to come up,” Everline says.
Almost 60 km from Nairobi,the bumpy road leads us off Malaa Centre to a small village in Machakos County. We meet Keren Gioko and her two siblings, they are getting ready for school, a few years ago, Kenyatta National Hospital was Keren’s second home after she was diagnosed with kidney disease at the age of 4, she was on dialysis just like Everline,, twice every other week.
“I underwent peritoneal dialysis for 3 months, then after 8 years the disease recurred again in 2022 march I went to KNH and i started dialysis for 11 months the doctor suggested that I should do a transplant,” Karen states.
Keren’s father Stephen Gioko notes that the family had a challenge in finding a match.
Keren was lucky that after several medical tests, her father was eligible to donate his kidney. It was a relief for her ending multiple trips to the hospital for dialysis, and she was closer to living a normal life.
“You know its not easy to find a donor so I am thankful that my father offered to donate his,” Keren states.
Even though Keren is now living a better life than she would with dialysis, she will be on immunosuppressant medication for the rest of her life.
Immunosuppressant medicine is taken by patients who receive donor organs to stop their bodies from attacking or rejecting the donated kidney because the immune system will see it as a “foreign” organ and will always attack it
Failure to follow the doctor’s advice will lead to the donated kidney being attacked and the patient will be back on dialysis.
Teachers at ACK Mukengesya secondary school in Matungulu constituency are aware of Keren’s routine, and help her to ensure adherence to the drugs.
“We laid strategies on how to cope with the girl in school and we talked about diet and even the activities in the school what she can do and what she can’t do,” Samson Ngulu- Principal- Mukengesya Secondary School states.
Keren’s father notes that the costs of the drugs has been reducing with time.
In Sabaki area of Mlolongo in Machakos County, 66-Year-Old Captain George Maundu narrates to us how kidney failure halted his career for some time, but after two years on dialysis, his younger brother volunteered a kidney to him.
“I am a commercial pilot by profession and just to kind of give a purview of good transplant is of course I had been grounded on medical grounds I couldn’t fly of course with kidneys failed and on dialysis but the recovery was so complete that after like six months after the surgery I was actually able to be medically examined and qualified to be reissued with my flying license,” Maundu says.
According to the department of National Blood Transfusion, Tissue and Human Organ Service at the Ministry of Health, more than 7,000 Kenyans who are currently on dialysis have either failed to get a donor and a number of them are running away from the post-transplant cost. The National Health Insurance Fund (NHIF) is paying for up to Ksh. 76,000 per week per patient on dialysis but can not cover post-transplant care
“NHIF is ready to pay Ksh. 76000 per month to keep someone on dialysis but if somebody goes for transplant they are not willing to pay Ksh. 35,000 because they say it is not their policy so they will refuse to pay your medicine but should your kidney fail again due to lack of medication you will have to go back to dialysis they are ready to pay they are paying so that is the kind of logic that has baffled some of us that somebody will pay Ksh.76k a month but they don’t want to pay 35k but should your kidney fail which it will due to lack of medication they will pay,” Maundu notes.
In developed countries like the UK, organ donor registers are used to record an individual’s organ donation preferences.
The register is checked by a specialist upon the death of a potential donor and the deceased’s preferences are then discussed with their family and other close relatives. If they object to donation, then the National Health Service stresses that donation will not proceed.
Patients like Everline who are on the waiting list for Kidney donation are hoping and praying that the National Assembly of Kenya will discuss and pass the organ donation bill as soon as possible to allow them access to organs and save their lives.
This story was first published in Citizen Tv