Sixteen-year-old Sumeiya Abdi has not been in school since 2013. She is among the patients hooked onto the 20 dialysis machines at the Kenyatta National Hospital in Nairobi — the country’s chief referral and teaching institution — to help them manage acute and chronic kidney disease.

Acute kidney injury, also called acute renal failure, is more commonly reversible than chronic kidney failure.

Sumeiya was diagnosed with end-stage chronic kidney condition after her cheeks and feet began to swell, her father Ahmed Abdi said.

“Tests showed that about 72 per cent of her renal volume had been depleted, meaning that her kidneys were non-functional,” said Mr Abdi.

To help her cope with the condition, she undergoes dialysis twice a week, at a cost of Ksh2,500 ($24.6) per session. A kidney transplant though, is what Sumeiya needs, but she is yet to find a donor. She is one of nearly 200 patients on KNH’s waiting list for kidney transplants.

None of her close relatives is a suitable donor. Her father, for example, failed the glucose test, a pointer to the likelihood of developing diabetes, while a sibling, Ahmedsiyat Abdi, did not have a national identification card — a key requirement for organ donation under the Human Tissue Act 2012.

“The doctor also said that at 18, the boy is considered medically young; they preferred a donor aged at least 22,” said Mr Ahmed.

Sumeiya Abdi at the Kenyatta National Hospital in Nairobi, where she undergoes dialysis after her kidneys failed. By her side is her brother Ahmedsiyat Abdi. PHOTO | ROBERT NGUGI

Besides the challenge of finding a donor, Mr Abdi also does not have the Ksh500,000 ($4,932) needed to perform the surgery.

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.

According to John Ngigi who heads KNH’s renal unit, medics insist on donors being immediate family relatives because the likelihood of finding a match is higher.

“The further you move away from the bloodline, the less likely you are to find a donor; but some patients are unable to get organs from their relatives due to medical reasons such as a history of diabetes or non-matching blood groups,” said Dr Ngigi.

However, under special circumstances, an exception is made such as for married couples, as long as they prove that they are legally married or when tissues from close relatives do not match those of recipients.

Dr Ngigi said that before a person can donate an organ, rigorous background checks that sometimes run up to three months must be conducted.

“These ensure that the donor is giving the organ voluntarily without any expectations of favours from the recipient,” he said. “We need to ascertain that it is purely out of altruism.”

However, even though the background checks help to prevent illegal practices including organ harvesting and trade, some potential donors give up along the way because the process is tedious. Sometimes they are expected to seek approval from authorities such as chiefs, police officers and the Ministry of Health.

Capacity constraints in health institutions are also a key challenge. The kidney transplant queue at KNH for example, stretches all the way to 2018, despite the hospital performing the procedure on a weekly basis.

Costly machine not in use

The story of 27-year-old Anthony Maina who was diagnosed with primary sclerosing cholangitis, a condition that causes inflammation and scarring in the bile ducts, is also a case in point.

Maina was forced to travel to India for an operation that cost about Ksh8 million ($789,200) given the lack of capacity locally and grey areas in the law. His mother donated a portion of her liver for the procedure.

While KNH acquired a digital Sonoca 300 ultrasonic surgical aspirator in January last year for the procedure, it still cannot perform such intricate surgeries due to lack of proper laws. The machine was imported from Germany at a cost of Ksh8 million.

Organ transplants have been hailed as an effective therapy for end-stage organ failure, and are widely practised around the world. In Kenya, kidney and cornea transplants as well as skin grafting can be performed locally. Kidney transplants though, are the most common.

According to the World Health Organisation, kidney transplants alone are carried out in 91 countries.

Across the region, medics cite the lack of proper laws to govern the area of organ transplants as a major challenge.

In Kenya, for example, Dr Ngigi said that the existing Human Tissue Act under which the surgeries take place does not clearly state how the practice should be conducted.

“The law is silent on many things such as how to treat the body organs of a person upon their death,” he said.

If assented to, the Health Bill 2014, which is before the National Assembly, will allow a person who is competent to make a will, to donate his or her body or any specified tissue to a person or institution of his choice after death.

“Such consent can also be given by a spouse, parent, guardian or older brother or sister in the event the person dies without leaving a will,” the Bill states.

In the event that the relatives of a deceased person cannot be traced and no will is left behind, the Bill gives powers to the Health Cabinet Secretary to donate the body or its parts.

In Uganda, the transfer of human organs from one person to another is a challenge. However, Sarah Byakika, the planning commissioner at the Ministry of Health said that a draft Bill on organ donation and transplant is ready and waiting to be presented to the Cabinet.

“The proposed legislation seeks to create institutions responsible for handling organ donation and transplants,” said Dr Byakika. “We are looking at how these institutions can be regulated such that people’s rights are not abused.”

The law will also determine the types of body organs and tissues that can be donated.

In Tanzania, the Ministry of Health in partnership with Muhumbili National Hospital — the country’s largest hospital — is working on a law to govern organ transplants with special emphasis on kidney transplants. The country has been operating under a 2011 international law but plans to have clear-cut regulations in place by 2017.

Organ shortage

The shortage of organs is a universal problem and living donors should be genetically, legally or emotionally related to their recipients, the WHO states.

It notes further that: “No cells, tissues or organs should be removed from the body of a living minor for the purpose of transplants other than narrow exceptions allowed under national law.

According to the WHO, in some countries, while the option of setting up a deceased organ donation programme where organs are harvested from patients who have been medically declared to be in a “state of dying” is an option to address the shortage, the development of such a programme is hampered by sociocultural, legal and religious factors.

“We have people who believe that somebody should be buried intact,” said Dr Ngigi. “But we have seen in developed countries governments making the assumption that if an individual has not recorded an organ donation decision (opt in or opt out), they will be treated as having no objection to donating any of those organs.

“But in a country with a complete eye cornea storage bank set up in 2010 to encourage more Kenyans to pledge their corneas, most people are reluctant to do so,” he added.

“We charge Ksh250,000 ($2,466) for a cornea transplant. But if we were to use locally donated corneas, the cost would drop to Ksh60,000 ($592),” said Dr Jyotee Trivedy, an ophthalmologist at Lions SightFirst Eye Hospital in Nairobi.

Dialysis and transplants

Sixteen-year-old Sumeiya Abdi has been under dialysis since 2013 when she was diagnosed with end-stage chronic kidney condition.

Sumeiya undergoes dialysis twice a week to help her cope with the condition. Doctors at Kenyatta National Hospital in Nairobi where she is seeking treatment advised her father that a kidney transplant was the best bet for his daughter. But Sumeiya is yet to find a suitable kidney donor.

If successful, kidney transplantation improves the patient’s rate of survival and quality of life, and saves a substantial amount in costs compared with dialysis.

In high income countries for example, the current annual cost of maintaining a functioning transplant is approximately one-third to one-quarter that of dialysis, according to the World Health Organisation. In low to middle income countries, transplantation is rare due to lack of infrastructure. Many patients rely on dialysis to survive.

A dialysis machine mixes and monitors the dialysate, a fluid that helps to remove unwanted waste products from the blood. It also helps to get an individual’s electrolytes and minerals to their proper level.