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Kidney patients trapped in fights over transplants

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Medical workers conduct an organ transplant. PHOTO/COURTESY  

As the setting up of the organ transplants council drags on, patients caught up in the web of delays are struggling with the perils of kidney disease and prohibitive costs of life-saving dialysis.

Health Minister Ruth Jane Aceng revealed last year that plans to establish the council were put on hold due to a lack of the Shs5 billion needed to facilitate the process.

The council aims to regulate activities of organ transplants to prevent exploitation and violations by health professionals, dealers and the public.

Dr Aceng told Members of Parliament on March 27, 2024, that her ministry would spend Shs3.6 billion on training
and benchmarking from other nations, whereas an additional Shs1.4 billion would bankroll activities of the Council.

“We have halted all transplant activities because we need a Council in place. Yesterday, as you [MPs] were touring the
surgical exhibition, you saw the ready facilities. They can’t operate unless we have a Council, and have to be trained,” she said.

However, the chairperson of the Uganda Medical Board, Dr Jane Odubu Fualal, in an interview wondered why
the government had failed to provide the Shs5b required for benchmarking, training, and financing the activities of the Council.

“Government should prioritise investing in health and operationalise this Council and allow transplants to be-
gin,” she said.

Dr Odubu said the Board clears about three to four patients to go for transplants in India, with the majority being those in need of kidney transplants.

She said the number of patients in need of transplants is bigger but those who make it abroad are few due to the high costs involved.

Dr Odubu stressed the need to train more specialists and also promote specialised services in both private and public hospitals to ease access.

Many people with kidney problems go abroad for a transplant that costs around $35,000 (about Shs120 million).

However, it is estimated that the kidney transplant cost in Mulago National Referral Hospital could be around Shs50 million.

Currently, the transplants are free at Mulago Hospital with four patients getting transplants in November 2024, nearly seven months after Dr Aceng said the activities had been halted.

The law
President Museveni signed into law the Uganda Human Organ Donation and Transplant Act, 2023, in March 2023.

President Museveni gestures on December 22, 2023 after a meeting with officials from Uganda's health ministry and a team of Ugandan and Indian scientists who carried out the East African country's first ever kidney transplant on December 20, 2023. PHOTO/HANDOUT

Section 13 of the law provides for 15 functions of the Council. These include regulating, organising, and supervising the national organ, tissue, and cell donation and transplant; regulating designated transplant centres and approved banks; enforcing standards; regulating the allocation of organs; and overseeing the national waiting list.

Mulago transplant approval confusion
Dr Rosemary Byanyima, the Executive Director of Mulago Hospital, said they were given the green light to perform the transplants by the Uganda Medical Board, a statement which Dr Odubu of the Medical Board refuted.

“Before the [Transplant] Council is in place, the Uganda Medical Board is the one which is helping us to do the assessments and the approvals, and we have to follow the ethics and regulations as we do these procedures,” Dr Byanyima said.

“Then our partners from Yashoda Hospital (in India), it is now 10 years, and you didn’t give up on us, you provided us with training, guiding us as we designed the transplant unit to meet the standards, and the time you put in to come and work with the team here. We buy the start-up medicine for these patients using the hospital budget,” she added.

However, Dr Odubu clarified that Mulago Hospital was never authorised to conduct transplants. She explained that the decision was made independently by surgeons trained in India who were eager to apply their skills rather than remain idle.

“Mulago has been organising its kidney transplants. It trained an organ transplant team many years ago. A team of doctors and nurses even went to India to learn more about transplant surgery. So, instead of losing the skill they decided to start conducting kidney transplants,” she said.

Selection for free transplants
Dr Peace Bagasha, the kidney specialist at Mulago Hospital, stated that they are currently managing less complex cases as they continue to build their capacity.

“We are getting persons of 18 years and above and below 40 and if they are above 40 but below 50, they should be in fairly good condition -stable on dialysis, not having comorbidities such as heart failure or complicated diabetes. We are avoiding those, we shall get to those as we get more confident,” she said.


The management said Mulago National Referral Hospital had performed a total of five kidney transplants so far,
and four more selected patients are being prepared for the transplants.

But these are few compared to the average of 1,000 dialysis patients handled at the facility annually, many of whom require lifesaving transplants.

Prof Philipa Musoke, the Mulago Hospital board chairperson, explained that the country should scale up kidney transplants to save more than Shs9 billion spent on dialysis annually.

“Each dialysis session costs 365,000 shillings, although Mulago subsidises this amount to Shws150,000, which is more than 50 percent reduction,” she revealed.

“We hope one day it will even be less than that. Dialysis service costs more than Shs9 billion annually and hence
the need for sustainable kidney transplant programmes in our country,” she added.

Dr Rosemary Byanyima, the Mulago Hospital executive director, announced plans to increase the number of transplants conducted each year.

“We are taking stock of what is happening and what the Yashoda hospital teams are doing during the transplants. The team from Yashoda is offering skills transfer and they told me our team is gaining the skills,”she said.

“Next financial year, we want to target doing 12 kidney transplants, then we scale up the scope. We want to do at least 12 corneal transplants and four liver transplants. We need more support to do this,” she added.

Redundant transplant facility
In 2023, Lubaga Hospital commissioned a Shs1 billion Dr Rita Moses Transplant theatre. The hospital management said once approved by the proposed Organ Donation and Transplant Council, the hospital is expected to start conducting liver, kidney and corneal transplants.

Dr Michael Okello, the President of the Society of Uganda Gastrointestinal and Endoscopic Surgeons, a body that
brings together intestinal surgeons and liver specialists in Uganda, said Ugandans are also battling liver diseases but access to transplants abroad remains a dream.

Dr Okello, who is also the Director of the Transplant Theatre at Rubaga Hospital, stated that the hospital has invested in transplant infrastructure and is fully prepared. However, the government’s delay in establishing the council remains a significant challenge.

He pointed out that Uganda already has a guiding law outlining the composition of the Organ Donation and Transplant Council, along with the Medical Board responsible for referring patients abroad. Therefore, he argued, Rubaga Hospital should be permitted to begin conducting transplants.

“If you look at the Constitution of the Medical Board, it’s not very different from that of the Transplant Council by
law,” he observed.

The expert urged the government to expedite steps to ensure the private sector starts organ transplants to save the
lives of many patients.

“Because the systems are not well developed, most of the [liver] patients, once they reach that stage of liver failure, we try to manage them conservatively until they die because our systems for transplant are not yet developed,” he revealed.

“Right now, we are few specialists in the country, but we can work together as a team to advance surgical care for liver, pancreas, kidney and intestinal diseases,” Dr Okello added.

He also said the few patients who get money through fundraising are referred to India. Last year alone, he referred four patients for liver transplants—two children and two adults.

Dr Okello revealed that the average cost of a liver transplant in India, including accommodation and transportation,is approximately Shs150 million.

He further explained that common risk factors for chronic liver disease leading to liver failure in Uganda include cancer, Hepatitis B, Hepatitis C, obesity, and excessive alcohol consumption.

“Those are the common risk factors, and all those can either give you chronic liver disease, leading to liver failure without cancer, or they can give you chronic liver disease with cancer. Cancer and chronic liver disease or liver cirrhosis are the key indicators for liver transplant,” he explained.

After commissioning the centre at Rubaga Hospital in 2023, Dr Henry Mwebesa, the head of the Health Ser-
vice Commission, noted: “A law was assented to by President Museveni on March 15 and it became effective
on August 1, 2023, but we must have a council to assess the readiness of hospitals.” He was then serving as the Di-
rector General of Health Services at the Ministry of Health.

Dr Daniel Kiggundu, the head of the Nephrology Department at Kiruddu National Referral Hospital in Kampala, said seven percent of the population in Uganda are living with kidney diseases.

“That doesn’t mean all of them need dialysis, but they are at risk of progressing to a point where they need dialysis.
So, it means, we are doing dialysis, and we are starting on transplants, but we also have the duty to identify those people with the disease and do everything it takes to prevent progression, using modern medicine,” he said.

He stated that among outpatients undergoing dialysis, 30 percent have diabetes, while 90 percent suffer from high
blood pressure. Dr Kiggundu urged government for more space to accommodate more patients at Kiruddu hospital.
He also mentioned that on clinic days, typically Monday or Tuesday, the hospital sees between 40 and 50 outpatients.

Additionally, he noted that the inpatient capacity is limited to just 30 beds.

“Every day, we do up to 60 dialysis patients. They have to be admitted only for the initiation. Our goal is to remove
the symptoms and signs of kidney disease to a degree that allows an individual to maintain some productivity and prepare for kidney transplant,” he explained.

Dr Kiggundu revealed that although the global standard recommends that a patient should undergo dialysis thrice a week to minimise symptoms, this has been cut to two days at Kiruddu, mainly due to understaffing and limited supplies. At Kiruddu hospital, dialysis goes for Shs60,000 per session.

How dialysis is conducted
“During dialysis, what happens is we are trying to mimic what the kidney does. So the kidney gets blood and filters it and removes urine and makes urine and that leaves the blood clean,” Dr Kiggundu explained.

“But this person now no longer has the ability to remove all the waste products in urine. So what the dialysis does
is the kind of dialysis we do is called hemodialysis.

“So we get the blood out of the patient’s blood through a tube and this tube is connected to a filter on the machine. And then the blood is cleaned in this filter and returned to the body. It goes round and round for four hours and at the end, all the blood is returned back to the patient,” he added. 

In need 

One man’s struggle with acute kidney disease Gerald Kikawa, 25, a resident of Makindye, Kampala, was last year diagnosed with acute kidney disease. He started undergoing kidney dialysis, a life-saving procedure in November 2024.

Gerald Kikawa undergoes kidney dialysis at Lubaga Hospital in Kampala. PHOTO/JANE NAFULA

When our reporter visited Kikawa at Lubaga Hospital in Kampala last week, we found him undergoing a dialysis session, which lasted nearly four hours.

The dialysis room was quiet, filled only with the steady hum of the machines—a sound that can be unsettling for a first- time visitor.

Kikawa’s prayer is that his condition doesn’t progress to chronic kidney disease, which would necessitate him to undergo a kidney transplant abroad.

He explains that his family is already struggling to raise Shs300,000 per dialysis session, and with three sessions required each week, the burden is overwhelming.

This means every week, his parents must mobilise Shs900,000.

‘‘I have heard of patients who are supposed to undergo organ transplants but are still stuck here because the excessive cost of doing it abroad is out of their reach. This wouldn’t be the case if such services were offered here. I pray to God to heal me because dialysis is very expensive,’’ he says with a faint voice as he rests his head on a soft pillow.

Dialysis is a medical procedure where a machine, a dialyser, is used to remove impurities or wastes, and excess fluid from the blood because the kidneys that would do this naturally are no longer functioning properly.

With the uncertainty around the medical outcome at this point, Kikawa’s plea to the government is to expedite the establishment of the Uganda Organ Donation and Transplant Council to increase access to the services in Uganda, especially in the private sector, and at an affordable rate.

Doctors check on a kidney donor at Mulago Referral Hospital on November 22, 2024. PHOTO | ISAAC KASAMANI

Dr Olive Kabaliisa, a kidney specialist at Rubaga Hospital, says kidney patients, especially those with chronic kidney disease who qualify for transplants are drained by the costs.

She calls on the government to prioritise the establishment of the Council in question, so that such transplants can be done within the country at a much cheaper cost.

‘‘Dialysis is draining them. Most times, they are forced to move from Rubaga Hospital to Kiruddu National Referral
Hospital. Currently, we offer dialysis and also prepare patients for transplants,’’ Dr Kabaliisa explains.

‘‘But as we prepare them for transplants, they still have to continue with dialysis and tend to run out of money,’’ she adds.
Dr Kabaliisa says the Shs300,000 charged per dialysis session at Rubaga Hospital is ‘‘purely charity’’
(reduced price), given that they buy the consumables expensively due to high taxes.

She says once a patient crosses from an acute phase to a chronic case, they require a transplant.

The expert also says the number of patients battling chronic kidney diseases is on the rise, yet the majority are unable
to access transplants due to financial challenges.

She urges the government to prioritise setting up the organ transplants council so that local hospitals can be given the green light to undertake such transplants.

Transplants needed by Ugandans include kidney, heart, liver, cornea, bone marrow, hair. 

Statistics 

  • President Museveni signs Uganda Human Organ Donation and Transplant Act, 2023, in March 2023.
  • Shs120 million for Kidney transplant abroad
  • Shs50 million kidney transplant at Mulago National Referral Hospital
  • Mulago Hospital has conducted five kidney transplants so far

Who qualifies for transplant at Mulago

  • Persons of 18 years and above and below 40 or if above 40 but below 50, but should be in fairly good condition-stable on dialysis, not having comorbidities such as heart failure or complicated diabetes.
    About 3.2 million people are affected by kidney disease.
  • Mulago Hospital spends Shs9 billion shillings on dialysis annually.
    1,000 dialysis patients handled by Mulago annually, with many requiring life-saving transplants.
    Mulago Hospital charges Shs150,000 per dialysis session, a subsidised rate given the standard cost which is Shs365,000.
    Shs60,000 charged per dialysis session at Kiruddu Hospital.
  • Lubaga Hospital charges Shs300,000 per dialysis session.
  • Kirrudu handles up to 60 dialysis patients daily.
  • Kiruddu has 30 bed capacity for kidney patients
  • President Museveni signs Uganda Human Organ Donation and Transplant Act, 2023, in March 2023.
  • Shs120 million for Kidney transplant abroad
  • Shs50 million kidney transplant at Mulago National Referral Hospital
  • Mulago Hospital has conducted five kidney transplants so far
  • Who qualifies for transplant at Mulago

  • Persons of 18 years and above and below 40 or if above 40 but below 50, but should be in fairly good condition-stable on dialysis, not having comorbidities such as heart failure or complicated diabetes.
    About 3.2 million people are affected by kidney disease.
  • Mulago Hospital spends Shs9 billion shillings on dialysis annually.
    1,000 dialysis patients handled by Mulago annually, with many requiring life-saving transplants.
    Mulago Hospital charges Shs150,000 per dialysis session, a subsidised rate given the standard cost which is Shs365,000.
    Shs60,000 charged per dialysis session at Kiruddu Hospital.
  • Lubaga Hospital charges Shs300,000 per dialysis session.
  • Kirrudu handles up to 60 dialysis patients daily.
  • Kiruddu has 30 bed capacity for kidney patients