Experts, Govt., fight over CKDu vs. CINAC :

Deadly disease un-named

by Carol Aloysius

The deadly kidney disease which has afflicted over 70,000 while its cause remains a mystery, now seems to have lost its tentative name – CKDu.

A recent news story of a medical research team of foreign and local nephrologists renaming the officially accepted medical term, ’Chronic Kidney Disease of Unknown Origin (CKDu)’, has brought mixed reactions from the medical community.

The Medical Faculty of the Rajarata University which organized a reportedly first international symposium to be held in Sri Lanka on CKDu at Anuradhapura , re-christening the widely prevalent Dry Zone disease with its new name of CINAC ( Chronic Insterstitial Nephritis in Agricultural Communities ) said, the name change was merely to give the international medical community a better understanding of what the disease is all about.

Health Ministry officials on the other hand, have expressed disapproval of what they consider a violation of medical ethics where a university has taken upon itself to rename a disease, which only Health authorities such as the Epidemiology Unit, is empowered to do.

They are thus adamant they won’t recognize the new name. The conveners of the symposium however, are determined it gets recognition, at least globally, if not locally, as the new name will be included in the new edition of the prestigious Oxford Textbook of Medicine.

Meanwhile, change or no change of name, the victims of the dreaded CKDu remain fearful and uncertain of their future. The prolonged discussions and conflicting views on the causes or aetiology of CKDu by nephrologists, scientists, researchers and university lecturers aired on the radio and T.V. or appearing in newspapers, have only aggravated their fears and confusion as to what the actual cause of the disease is, and how it can be prevented.

“Some say, it is the water. Others say, it is the soil. Still others say, the wild lotus is to blame. We have lived with this disease for decades. Why is it that no one has been able to find out the real cause”, Randumalige, 58 a farmer from Girandurukotte said.

Randumalige has been a victim of CKDu for the past five years and is grateful that his life span has been extended by the available dialysis and other medical facilities in the main hospital in the area. He fears that his son Tissa, 25, who helps to farm his small paddy field, might also be stricken by this fatal disease for which there is no cure. “ I have told him to seek some other job outside the NCP since it is here that the disease has spread “, he said.

History

What is CKDu? What causes it?

To go back a few years: the Government of Sri Lanka ( GOSL) , asked the World Health Organization ( WHO) to help them get to the bottom of the mystery. The WHO responded by launching a coordinated multi-sectoral , multi-disciplinary research effort, based on existing information.

This resulted in a National Research Program for Kidney Research, which not only aimed at finding out why chronic kidney diseases were so high in certain parts of the country ( mainly the Dry Zone), but also probe the mystery of an emerging kidney disease ( CKDu) whose origin continued to elude them. Health officials were concerned, if the runaway disease affecting thousands of mostly young agricultural farmers in the North Central, North Western, Uva and Eastern Provinces was not stopped in its tracks, many farmers between the ages of 25- 50 or more may not be able to enjoy their full life span.

In 2011, at a media discussion, the Deputy Director General Health Services, Dr P.G. Mahipala announced, a study was being made of CKDu , involving various sectors in different parts of the island , as well as hospitals in areas at highest risk- such as Anuradhapura, Girandurukotte and Padaviya. Former WHO Representative in Sri Lanka Dr F.R. Mehta who was also present, made some pertinent observations worth mention.

He said, “The issue of chronic kidney disease affects all countries because it has certain meteorological and predisposing factors, such as, diabetes, hypertension, cardiac problems, etc., that cause it.

In addition, there are unknown aetiological causes, as in certain parts of Sri Lanka, especially, in the North Central Province, a major part of our current research program. A comprehensive program to this end has already been developed by the WHO which has identified certain aspects,” he said.

The WHO’s well-researched study examined the food, water, and soil of a selected number of high risk areas in the NCP, but, is yet to be made public. We asked Deputy Director-General of Public Health ( DDGPH) Dr Sarath Amunugama how he viewed the recent move to re-name CKDu at the recent international symposium at Anuradhapura . Did anyone from the Health Ministry attend it?

“To my knowledge, no one was invited to attend it, from the Health Ministry”, was his reply.

He said, before last week’s symposium, another meeting was organized by the WHO on the same subject. “The organizers of this symposium were also present. But none of them informed us about the name change.

Re-naming of a disease is the job of the Epidemiology Unit or the Health Ministry, not a university or private organizations. We will not recognize or accept it”, he said. But, what if it goes under this name in the new Oxford University Text book of Medicine? I asked.

Dr Amunugama’s argument was: “Anyone is free to put a different name to a disease on any text book he writes, or which has already been written, like the text book they are talking about. But unless scientifically evaluated and justified credibly , the Health Ministry will not accept it”.

Excuse

So what do the conveners of the Anuradhapura international symposium say in defence? Have they a valid excuse for re-naming a disease which had been given the stamp of approval by the Health Ministry, overnight and without consulting the Health authorities?

Head of Pharmacology, Faculty of Medicine, Raja Rata University, Dr Channa Jayasumana, Chief Organizer of the international symposium in Anuradhapura represented by scientists from US, Belgium, El Salvador, Cuba among others, in reply said, “CKDu was first identified in 1994 in Padaviya in the NCP. Studies in this region on that Chronic Kidney Disease ( CKD) which was widely prevalent in the region was due to two other chronic diseases: hypertension or diabetes

However, confronted by a kidney disease not caused by either of these two pre-conditions baffled the health authorities. As they were unable to establish a definite cause for it, it was simply called, ‘Chronic disease of Unknown Origin( CKDu).’

Toxicological

However, the Raja Rata Medical Faculty continued to probe the mystery of the origins of CKDu, until the research teams were able to narrow the causes down to certain toxicological factors.

“We identified it as being due to certain geo-climatic factors which aggravate these chemicals. We also found, in the Dry Zone, the effect of agrochemicals used by farmers are aggravated by certain geo climatic factors .All of these factors are unique to areas where the victims of CKDu lived”, Dr Jayasumana said.

He listed the factors as follows: 1) Unique soil conditions. 2) Ground water conditions. 3) Cascade irrigation system i.e. its inter-connected reservoirs and canal system. 4) High daytime temperature and high humidity. The final conclusion that ingesting contaminated water from toxic agricultural chemicals, was an important, if not main cause for the disease .

“It was after arriving at these facts, that we decided to re-name the disease at the symposium in Anuradhapura.: Dr Jayasumana said. “ We felt the new name of CINAC gave a more comprehensive idea of CKDu to the international community who not only accepted the name, but have shown willingness to find solutions to end the problem by planning new studies on minimizing the toxins in the environment.

The answer lies in detoxifying drinking water by Reverse Osmosis( a technique used to purify water.) This is the main prophylactic measure against the disease in Sri Lanka,” he said. “But first , we have to develop a mathematical model, assess the disease, and see which toxin is highest and in what place, initially.”

Affected

Around 70,000 farmers between the ages of 30-45 have developed CKDu by drinking contaminated water from agricultural toxins and face a bleak future, he said.

Was there any hope for them?

“We are trying to test a new drug that can delay its progress. It is a multi centered study with scientists from all over helping us in different aspects”, he said.

The disease, however, is now of an uncertain name as those responsible for naming seemingly squabble over who is to take the credit.