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Tuesday, July 16, 2019
KAMPALA, Jun 15 2015 (IPS) - Vincent Mugyenyi, a 65-year-old retired pilot from the Ugandan Air Force, has lost count of how many dialysis treatment slots he has had to attend in the eight years he has been fighting chronic kidney disease.
He spends eight hours a week on a dialysis machine in Mulago National Referral Hospital that filters toxins from his blood, performing the functions of healthy kidneys. The ultimate aim of dialysis is to bridge a gap until kidney functions recover or until a transplant is available for patients.
“I used to have a small farm with about one hundred animals. I sold all those animals for treatment because I still needed life. That is how this disease has affected me. It has depleted every resource of mine … land is very important but I have sold mine just to buy life,” Mugyenyi told IPS.
Mugyenyi is both luck and unfortunate. He is one of the minority of Ugandans with chronic kidney disease who has been able to receive dialysis treatment, but he does not qualify for a kidney transplant operation because of his advanced age.
Chronic kidney disease (CKD) is a growing health burden in Uganda that is affecting the economic, social and physical livelihoods of patients and their family members.
Dr, Simon Peter Eyoku, a kidney disease specialist at Mulago Hospital’s renal unit, told IPS that CKD affects mainly Ugandan adults aged between 20 and 50, and that the commonest causes of kidney diseases in Uganda are HIV-related infections of the kidney, followed by hypertension and diabetes.
The World Health Organisation (WHO) says that with CKD being the 12th leading cause of deaths worldwide and its incidence growing by around eight percent annually, it is a global public health concern.
Mulago National Referral Hospital is the only public hospital in Uganda treating patients with renal or kidney-related complications and, according to Eyoku, that often places a further burden on patients who have to travel long distances to the dialysis unit.
“I have seen patients migrate from far corners of the country to Kampala because that is where the dialysis machines are. That is how costly this disease can be to patients,” Eyoku told IPS.
A further problem is that the dialysis unit only has 33 haemodialysis machines for a total population of about 36 million people.
When the unit opened almost eight years ago with four dialysis machines, a patient had to pay the equivalent of 500 dollars for a week of dialysis treatment, making the cost of treatment prohibitive.
“Those who could afford it would fall out after selling land, houses, cars and then failing to continue. And at that time, the cost of a transplant was equal to the amount of money you paid in a year for dialysis,” said Eyoku.
In March 2014, the administration of Mulago Hospital decided to reallocate its budget in order to finance the renal unit and brought the cost of a week of treatment down to 40 dollars, but that is still out the reach of most Ugandans.
The hospital is now also offering two free sessions of dialysis, and Eyoku told IPS that this has led to an influx of patients with CKD, “so now we are struggling because we are getting many more patients on dialysis.”
Uganda’s health planners are accused of not giving priority to kidney-related diseases. “I wish we had more specialists managing kidney diseases,” Dr Robert Kalyesubula, one of the four consulting nephrologists at Mulago Hospital, told IPS.
“I wish we had more specialists managing kidney diseases, I wish we had more awareness programmes about kidney disease so that people know about it because it is devastating. I have seen big people break down on being diagnosed with kidney disease. And the pain, because it affects a whole family. If a father gets the disease then the children will not go to school.”
One of the difficulties with kidney disease is that in its early stages it has no specific symptoms so the patients who turn up for treatment are often in the final stages of the disease.
“Patients come in the dying stage,” said Kalyesubula. “You spend 90 percent of your time struggling to keep people alive rather than making them live.”
In addition, said the nephrologist, in Uganda as in the rest of sub-Saharan Africa, the magnitude of CKD is unknown and is not given sufficient importance.
“We don’t have sufficient data on the disease. We understand more about HIV, malaria and tuberculosis, because these are diseases with lots of funding behind them. But funding for kidney disease isn’t there. Kidney disease deserves the same level of importance as HIV. We are ignoring a disease which can be treated in its early stages.”
Patients who cannot afford to pay the 40 dollars a week for dialysis are treated in ward 4C, and the impression is that they are prisoners condemned to a death sentence with no possibility of appeal.
When IPS visits the ward on a busy afternoon, the scene was one of pathetic chaos, with the few doctors and nurses available rushing round, attending to both adult males and young girls in the same ward.
A male patient in his mid-forties had just died from kidney failure, and at the entrance to the ward, IPS met Rosemary Kyakuhaire, packing the bags of a brother who had died earlier in the day. She said that he had spent three weeks in the ward receiving palliative care because her family could not afford the expensive dialysis treatment.
In Uganda, Kalyesubula told IPS, a person would rather be diagnosed with HIV than kidney disease. “I say that mainly because HIV has a lot of support systems in Uganda. But for kidney disease, you are there on your own. I have also seen people sell their houses to go for a kidney transplant but you don’t have to do that for HIV/AIDS.”
Provision of CKD treatment in Uganda depends primarily on whether the patient has health insurance or can otherwise afford treatment through taking out loans, selling property or financial support from relatives and friends. There are two private hospitals offering dialysis but only a lucky few can afford them.
Twenty-seven-year old Benon Mulindwa is one of the lucky ones. His employer, the Uganda People’s Defence Force (UPDF), had medical insurance cover for his treatment and transplant costs. He told IPS that without that medical cover, he could not have afforded the 20,000 dollars or so a year for dialysis and another 20,000 dollars for his kidney transplant.
However, Mulindwa received the transplant not in Uganda but in India, with his employer’s medical insurance cover paying for the costs of transport to India and surgery there. He explained that most patients have to look for their own kidney donors at home.
Unlike developed countries which run public kidney donation registries, patients in Uganda have to find potential donors and that, said Kalyesubula, is where one of the difficulties for CKD patients lies.
Because of lack of awareness about the safety of kidney donations, many Ugandans are unwilling to donate a kidney to save the life of one of the growing number of patients on the kidney donation waiting lists.
But that is not the only difficulty, as Mulindwa explained. “It is very difficult because there those who come as thieves, there those who come expecting to be paid a lot of money. I know of one who promised to donate a kidney to one of the patients, but when the money was sent the ‘donor’ disappeared.”
Edited by Phil Harris
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