The burden of treating kidney disease in Uganda 

Irene Nerima, 30, a resident of Kisaasi, Kampala, is one of the patients with end-stage kidney disease, who comes to Mulago National Referral Hospital for dialysis. 

"I feel weak, have no appetite and I am always cold," Nerima tells our reporter during one of her dialysis sessions. "I have also been restricted from eating many foods such as those with a lot of potassium, red meat, dairy products and yellow fruits. Although I can eat apples and red grapes, I rarely feel hungry." 

Dialysis is a medical procedure that relies on a specially designed machine to remove waste and extra fluids in one’s blood when the kidneys cannot.

Nerima is hopeful she will get better. 

"I started dialysis in November last year but I still need a kidney transplant. I have already found a donor but have no money for the transplant," she adds. 

Her brother, Stephen Wandera says doctors at Mulago Hospital have asked the family to raise about Shs55m for the procedure (transplant) and an extra Shs6m for medical tests to determine whether she is a match with the donor. However, she sometimes also misses her dialysis treatments due to lack of funds. 

The cost of treatment

Kidney specialists in Uganda say a kidney transplant costs more than Shs100m abroad and after the transplant, a patient must spend more money to buy medicines to help sustain the new kidney.

These medicines may cost at least Shs2m a month. But at Mulago Hospital, where a kidney transplant was successfully performed in December, the Health Ministry and doctors estimate the cost to be between Shs45m and Shs50m.   

Nerima pays Shs150,000 per session of dialysis, every day she comes. Wandera says before her diagnosis, they had been seeking care at a private facility in Kampala (name withheld), where they accumulated medical bills worth Shs13m. 

Treatments were geared towards managing pain with strong pain killers. Nerima suspects that the strong pain killers that were administered to her in large quantities could have worsened the kidney disease and, hence, caused kidney failure. 

Nerima is not an isolated case. Many Ugandans are struggling with kidney disease and kidney failure. For more than a decade, James Walugembe, 66, a resident of Nakawa in Kampala, has been suffering from chronic kidney disease. 

“In 2012, I travelled to India where I was diagnosed with  kidney failure. The doctors recommended a transplant (a permanent solution) but I instead chose dialysis, which is less costly,” he says, adding that he started dialysis in 2013. 

Not enough care

Walugembe forms part of the rising cases of kidney disease in the country, amid the limited number of facilities that provide care and high charges that many may not afford. Another kidney patient, Hussein Kassim from Buikwe District, says he was advised to get kidney transplant but lacks the money. 

Kassim travels twice every week to Mulago Hospital, approximately 57 kilometres from his home, for dialysis, paying Shs200,000 per visit. 

The cost of dialysis varies from one facility to another, depending on the stage of the kidney disease, the type of machine used and availability of waivers for patients. Some (private) health facilities charge about Shs500,000 per session, with a requirement to make an initial deposit of between Shs1m and Shs2m by some hospitals, according to information from patients and doctors.  

The management at Mulago Hospital, a public facility, says they charge patients to enable them maintain equipment and sustainability due to limited funds from the government. 

Dr Jane Ruth Aceng, the Health Minister, says the government is concerned about the rising cases of non-communicable diseases such as kidney and heart diseases as well as cancer. She says the concern has been demonstrated through initiatives such as funding the first kidney transplant in December 2023 at Mulago Hospital and the expansion of dialysis services in other regional referral hospitals.  

“On March 15, 2023, President Yoweri Museveni assented to the Uganda Human Organ and Tissue Transplant Bill which has since then come into force, allowing our specialists to start the transplant programme,” she says.

Disease burden

“In relation to kidney transplants, recent studies have shown a high prevalence of kidney disease at 13 percent of the total population in Uganda. The renal disease ranges from mild to severe. The mild stage can be managed by our specialists while the severe stage requires dialysis and eventually a transplant,” Dr Aceng says, adding that in Uganda, about two percent of the population have end stage kidney disease.

According to statistics from the Ministry of Health, currently, there are more than 1,000 patients with end stage kidney disease on dialysis. 

“Mulago National Referral Hospital alone handles 1,082 dialysis sessions annually, as of June 2023. Kiruddu National Referral Hospital handles almost a similar unit. Other patients access dialysis in other regional referral hospitals, specifically Mbarara and Lira regional referral hospitals. [others get dialysis from private hospitals],” the Minister notes.

“This dialysis initiative will be rolled out to all regional referral hospitals [to increase access]. Dialysis presents significant costs to the patient and does not offer permanent solution to the patient. Due to increasing patient load, government acquired funding from Africa Development Bank to remodel Mulago Hospital so that a transplant unit is established,” she reveals.

"Owing to the cost of kidney transplants, many patients in Uganda opt for hemodialysis (a procedure where a dialysis machine and a special filter called an artificial kidney, or a dialyzer, are used to clean your blood)," notes Dr Peace Bagasha, a kidney specialist at Mulago Hospital.

Signs of kidney disease

According to scientists, a person with Chronic Kidney Disease (CKD) may not feel ill or notice any symptoms until the disease has advanced. 

The symptoms, according to specialists, can include foamy urine, urinating more frequently, itchy or dry skin, nausea, loss of appetite and weight loss.  

For more advanced CKD, one may experience numbness or swelling in the legs, arms and feet, achy muscle cramping, shortness of breath which can be life-threatening, vomiting, trouble sleeping and concentrating.  

Cause and prevention

Dr Robert Kalyesubula, the president of Uganda Kidney Foundation, says the major drivers of kidney diseases are non-communicable diseases such as diabetes, hypertension, chronic use of drugs such as anti-retroviral therapy, infections and sometimes, cancers. 

"So, prevention relies on taking a personal interest. For example, we should exercise and focus on eating a healthy diet full of fruits and vegetables," he adds.

The kidney specialist advises people to avoid taking raw salt, excessive consumption of alcohol and go for regular kidney checks since some people may not have symptoms. 

Dr Joseph Ogavu Gyagenda, a kidney specialist and Dr Jimmy Opigo, the manager National Malaria Control Programme, say hospitals are registering an increase in Acute Kidney Injury (AKI), worsened by delayed treatment and dehydration in malaria patients. They advise getting malaria treatment early to avoid complications.

Prevalence

In-depth studies about the prevalence of kidney disease across the region are scarce. A 2020 study report titled “The epidemiology of chronic kidney disease (CKD) in rural East Africa: A population-based study” shows that the disease prevalence varied widely across regions.  The study done in rural Uganda and Kenya by Anthony Muiru and colleagues, found that “the estimated CKD prevalence was 6.8 percent overall and varied by region, being 12.5 percent in eastern Uganda, 3.9 percent in southwestern Uganda and 3.7 percent in western Kenya”.

“Risk factors associated with greater CKD prevalence included age ≥60 years, HIV infection and residence in eastern Uganda. However, two-thirds of individuals with CKD did not have HIV, diabetes, or hypertension as risk factors,” the report reads. Diabetes and hypertension are often cited by scientists as risk factors for kidney disease. 

The researchers observed that some people could be born with genes that predispose them to risk of getting kidney disease. "It is interesting to speculate whether differences in the prevalence of CKD genetic risk factors across regions in sub-Saharan Africa may account for the differences in CKD prevalence," the report reads further.

Another 2022 report titled ‘Global Dialysis Perspective: Uganda,’ published in the scientific journal Kidney360, shows that the prevalence of CKD  in the community in Uganda ranges from two to seven percent, and up to 15 percent among patients with HIV or hypertension.