When Worlds Collide #29: Science and Politics of Kidney Disease in Sri Lanka

Text of my ‘When Worlds Collide’ column published in Ceylon Today Sunday newspaper on 19 August 2012

Sri Lanka – Climatic zones

Much of Sri Lanka’s Dry Zone is currently grappling with a drought caused by the delayed Monsoon. This is a double whammy for residents in several districts who have been engulfed by another ‘slow emergency’ for nearly two decades: mass scale kidney failure affecting large numbers.

Diabetes or high blood pressure can lead to kidney failure. But beginning in the 1990s, thousands of people in the North Central Province (NCP) developed the condition without having either factor – mostly farmer men.

This puzzled doctors and other researchers who struggled to understand how and why. It was soon assigned an official name: Chronic Kidney Disease of unknown etiology (abbreviated as CKDu).

Anuradhapura and Polonnaruwa Districts are ‘Ground Zero’ of this mysterious ailment for which there is no known cure. It has since spread to North Western, Uva, Eastern, Central and Northern provinces as well. The affected areas are now spread across approximately 17,000 sq km (a quarter of the island), which is home to around 2.5 million people.

Several thousand have already died; the exact number is not clear. Over 15,000 people are kept alive with regular kidney dialysis.

Men aged between 30 and 60 years, working as paddy farmers or farm labourers, are most affected. These factors are being investigated by health officials and many scientists searching for ways to contain and treat CKDu.

The latest attempt to make sense of the deepening mystery is by India’s Centre for Science and Environment (CSE), an independent research and advocacy organisation. They collaborated with the Ministry of Water Supply and Drainage, and the non-profit Centre for Environmental Justice (CEJ) in Colombo.

CSE’s scientists tested samples of drinking water, soil, rice plant and grain, pesticides and chemical fertilizer from many locations. Their study report, released in Anuradhapura this week, does not pinpoint one definitive factor. Yet it clarifies some issues and takes the debate forward.

What causes it?

Helpfully, the CSE report collated many theories and speculations on possible or probable causes of CKDu. Listed in no particular order, these include: excessive cadmium in the natural environment; high levels of fluoride in drinking water; using fluoride-rich water in low quality aluminium pots; “hard water” with higher than normal levels of minerals; and toxins generated by blue-green bacateria in the water.

Humans are exposed to multiple elements over time. Finding one rogue element is never easy. So factors such as illicit liquor and Ayurvedic medicine are also being studied. Meanwhile, a team at Peradeniya University is probing whether people in affected areas have a genetic predisposition.

In 2011, some researchers from Kelaniya and Rajarata universities argued that arsenic in pesticides and chemical fertilizers, when combined with calcium in hard water, causes CKDu. Their findings became controversial when one researcher claimed to have derived key insights through ‘divine intervention’.

So is it Nature, nurture, or a combination that is causing this misery? Nobody knows – as yet.

In 2009, the World Health Organisation (WHO, a specialised agency of the UN system) and the Health Ministry’s epidemiological unit appointed 10 study groups to study this problem. Their findings have been submitted to the government but not yet released. Why?

We cannot afford bureaucratic apathy in a matter of such urgency and importance. The outcome of public science must be shared with the public and media in the public interest.

What lies beneath these calm waters….?

Beware of opportunists!

Delays in releasing research and analysis will only allow speculation and conspiracy theories to gain momentum. Selfish opportunists are already flocking to CKDu affected areas apparently seeking to implicate their pet hates. Sadly, some of these claims are peddled – and even cheered — by sections of our media.

Such tilting at windmills is muddying the already suspect waters and can confuse policy makers. Senior scientists like Prof Oliver Ileperuma and Prof C B Dissanayake – at the forefront in related research — have stressed the need to separate facts from speculation and myths.

Another fervent plea for sanity appeared recently in the respected Ceylon Medical Journal (CMJ). Established in 1887, CMJ is published by the Sri Lanka Medical Association (SLMA), the national professional body of doctors. Writing in the December 2011 issue, three medical researchers — A R Wickremasinghe, R J Peiris-John and K P Wanigasuriya – called for dispassionate discussion of current knowledge and gaps.

Given the widespread discussion and debate in the media recently, they urged, “it is timely that the available, credible, scientific evidence on CKDu (published in peer reviewed journals) is collated and analysed, and the difficulties faced in establishing causality are discussed.” (Emphasis mine.)

The authors added: “The cause of CKDu is likely to be multifactorial. At this point in time there is insufficient evidence to pinpoint a cause(s). Both the wellbeing of residents of the NCP and the enormous drain on health system resources and the economy demand that resolving the issue is a national priority.” (Full paper at: http://tiny.cc/CKDuCMJ)

Medical doctors are on the frontline in treating affected people and counselling devastated families. But CKDu is much more than a mere medical or health emergency. Interdisciplinary studies are needed – involving both natural and social scientists – and with adequate coverage, intensity and scientific rigour.

Scientific credibility requires that such studies are peer reviewed and published in national and international journals. The National Science Foundation, our key research funder and agenda setter, can provide direction. It must also ensure the findings are widely discussed in policy, professional and public forums. Secrecy is not an option.

There is no room for miracles or absolute truths in science. By very definition, science is open to rigorous scrutiny, challenge and refinement. CKDu is no exception.

Last year’s ‘divine revelation’ story reminded me of a famous creation by Sidney Harris, the doyen of science cartoonists. Science demands its practitioners to be more explicit and accountable than resort to ‘miracles’.

No miracles in science, please! Cartoon by Sidney Harris

There are also no shortcuts in science; the scientific method cannot be circumvented at officials’ whim or fancy. However, urgent societal problems like CKDu warrant fast-tracked study and action. These need more funds and brains.

But remember, too, that haste makes waste. The CMJ paper called for vigilance that mere associations “should not be considered to be of causal importance without documented evidence of proof”.

CMJ authors “advocate caution by the scientific community and the media when using such assertions that impact on policy, the livelihoods of the farming community and the economy of the country without scientific validity and biological plausibility.” Indeed!

Media’s Challenge

Science and media are inherently contested public spaces. They thrive only with open, informed and inclusive debate. No sacred cows, please!

We in the media face many challenges in covering this complex and nuanced story. CKDu has all the elements that typically interest the media: rising death toll, widespread human suffering, as yet unclear origins and causes, scientific arguments, and — since of late – some conspiracy theories.

During its early years, CKDu was under-reported by our urban-centred media. Well, no longer. We now face the real danger of some media outlets engaging in fleeting, superficial and alarmist reporting.

CKDu is not a straightforward or simple story to report. It’s not like a tsunami or flood. It’s even slower than a drought (a gradual disaster that many journalists struggle to grasp), and not an infectious disease. The impact is on human beings but there are no visible changes in the landscape.

CEJ’s Executive Director and chief scientist Hemantha Withanage has been travelling in CKDu affected areas, meeting hundreds of families and community workers. In some areas, every third house has lost at least one family member. Survivors are migrating to cities.

He relates the eerie and heart-wrenching scenario that repeats in thousands of households where men are living from one dialysis session to another, ideally every four days. Each session costs around LKR 12,000 (approx USD 92) to the healthcare system, and many hospitals don’t have enough dialysis machines.

With tens of thousands affected, it is only natural for emotions like anguish, despair and anger run high. Scientists and health officials need to be sensitive to such sentiments, without allowing scare-mongers and villain-hunters to hijack policies or research agendas.

CKDu is as much a national emergency as dengue fever in cities. To find relief for those already affected and protect millions more at risk, we must harness our nation’s brain power – giving them clear focus, adequate resources and academic freedom.

Never forget, however, that this isn’t just a research problem. Fellow human beings – not lab rats – are in danger. They need interim help. Both CEJ and CSE have called for better medical facilities as well as clean drinking water to reduce people’s dependence on poor quality groundwater. These are development needs in their own right.

While causes and solutions are being probed in earnest, government and voluntary organisations can immediately start providing relief and livelihood support to those living with CKDu. Show that we care.

Follow me on my blog: http://nalakagunawardene.com, and on Twitter: NalakaG

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About Nalaka Gunawardene

A science writer by training, I've worked as a journalist and communication specialist across Asia for 25+ years. During this time, I have variously been a news reporter, feature writer, radio presenter, TV quizmaster, documentary film producer, foreign correspondent and journalist trainer. I continue to juggle some of these roles, while also blogging and tweeting and column writing. There's NOTHING OFFICIAL about this blog. In fact, there's NOTHING OFFICIAL about me! I've always stayed well clear of ALL centres of power and authority.
This entry was posted in Communicating Development, Disaster, Environment, Journalism, Public health, Science Journalism, Sri Lanka, Water and tagged , , , , , , , , , , , , , , , , , , . Bookmark the permalink.

5 Responses to When Worlds Collide #29: Science and Politics of Kidney Disease in Sri Lanka

  1. Dr.C.S. Weeraratna says:

    As Nalaka has siad in his piece ” Science and Politics of Kidney Disease in Sri Lanka “better called Chronic Kidney Disease of unknown etiology (abbreviated as CKDu).is reported in many parts of North Central Province and some areas of N.Western, and Uva provinces. Various theories have been put forward to explain the causal factor/s of this disease. While it is important to carry out studies to find the exact cause/s of this disease, it is essential that good quality water is made available to those in the affected areas. Water supplied by Water Supply and Drainage Board from Thuruwila project to people in some parts of Anuradhapura District are not affected by this disease. Use of rainwater is another alternative.

  2. gnewy says:

    As the author clearly points out CKDu could be causes of multiple factors ranging from chemicals in water the water source, illicit farming practices, so on and so forth. There could be other factors as well. Possibly, unregulated illicit medicine that is marketed in the country, that may be sold in those parts of the country where it’s easier to get away with such illicit activities. The author also rightly emphasis it is not a medical procedure that can find the solution but requires evidence from multiple sources.

    In my honest opinion, it is data that can provide most of the answers. This is the key element that is missing in the health sector. Our epidemiologist are comfortable spending time and money to simply report on a hand full of 25 infectious disease, called notifiable diseases. These diseases are seldom; no more than 66,000 patients per annum. The last (2007) Ministry of Health Annual Health Bulletin reports that their are over 48 million patient visitations at the Government hospitals. This means the Epidemiology Unit is only reporting monitoring less than 0.1% of the reported cases. How these numbers are achieved is questionable but the Medical Statistics Unit confirms that these numbers are obtained through paper registries, where nurses are asked to supply the numbers for the 660+ hospitals each year but there has not been any numbers since 2007. Absence of this rich set of data in digital form is unfortunate.

    Syndromic surveillance has proven to be effective in the early detection of potential outbreaks. Instead of waiting for the disease to be confirmed, which may take several days with laboratory tests, etc, a recording of the symptoms the patient complaints of at the Outpatient department is of greater utility in nipping escalating diseases in the bud. Moreover, the accumulation of geo-spatial information along with the syndromic data can aid medical statisticians with them drilling in to the data to find alarming patterns.

    If such data had been available then medical statisticians could have analyses the data looking at all different correlations to zone in on a meaningful data sample. Moreover, other data sets such as agriculture information and water supply information can be layered on top of the medical data (which we call multi-variate statistical analyses) to verify the hypotheses.

    This is exactly what the Real-Time Biosurveillance Pilot achieved; here’s a Lakbima news article that tells the story: http://www.lakbimanews.lk/archvi/lakbimanews_10_09_26/feb/feb6.htm

    It is a heart stopping struggle trying to scale such a project that has proven it’s capabilities to better serve the health information needs of the country. Not just with identifying infection diseases or reportable diseases but also contributing information on life-style chronic diseases. A key emphasis of this biosurveillance program was enabling syndromic surveillance or at least create a comprehensive rich data set of disease, symptoms, location, date, gender, and age specific clinical information. We don’t need patients’ names and private information. Moreover, the pilot tested biosurveillance program was estimated to be ~40% cheaper with much higher efficiency gains and incremental benefits, relative to the present day paper and laborious practices that have no utility.

    With the pilot data we found alarming trends of Respiratory Tract Infection, Urinary Tract Infection, Hypertension to be twice as more common among above 40 women than men in Kurunegala District. The system was capable of detecting the escalation of any disease with a day opposed to the present day practice that takes weeks or for several deaths reported to raise some eyebrows. All these adverse events affect household productivity and our quality adjusted life years. I suppose absence of such granular information might be better for the institutions because then there is less work and less blame to take.

    The most visible problem, in trying to introduce such innovations with proven utility, is breaking the fear within the institutional silos of the health ministry that like to safeguard their territory. Because they don’t want to share resources and don’t see eye-to-eye, a one stone kill all birds kind of solution that benefits all is hard to pass their acceptance. They all want to do their own thing.

    Doctors (not all) have superiority complexes that they know it all, including ICT. If anyone from outside tries to introduce something then that is not good enough. I recently, had a meeting with set of Epidemiologist, before they could even hear out the utility of the field tested biosurveillance solution they had already judged it as useless, yelling away like hooligans. It is very immature and unscientific behavior that I experienced; especially, coming from a scientific community. The author also points to other unscientific behavior, with the lacking of peer reviewed publications; moreover, sharing of the raw data for other researchers to verify the conclusions.

    Until such time government institutions open up their data, learn to share, drop their inferiority/silo-ish structure, and those responsible institutions are forced to perform based on outcomes, they will simply not solve CKDu or any other problem for that matter and would continue to dwell within their safeguarded cradles, lavishly spending Government money.

  3. Pingback: When Worlds Collide #30: Watch out! Everybody Lives Downstream… | When Worlds Collide, by Nalaka Gunawardene

  4. I followed up with another column that probes WHY Lankan farmers are so dependent on – and also very careless with – chemical fertilisers. It’s because for much of the past 50 years, they have received it at heavily subsidised prices, and been urged to use it liberally to boost harvests!

    See: https://collidecolumn.wordpress.com/2012/08/26/when-worlds-collide-30-watch-out-everybody-lives-downstream/

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