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A review of the national response to CKDu in Sri Lanka

A review of the national response to CKDu in Sri Lanka Sri Lanka Journal of Social Sciences 2019 42 (2): 83-100 DOI: https://dx.doi.org/10.4038/sljss.v42i2.7966 REVIEW ARTICLE A. A. P. de Alwis and P. V. S. Panawala rd Coordinating Secretariat for Science, Technology and Innovation (COSTI), Ministry of Higher Education, Technology and Innovation, 3 Floor, Sethsiripaya (Stage I), Battaramulla, Sri Lanka. Abstract: Since the mid-1990s, Sri Lanka’s North Central are asymptomatic until late stages of the disease. Province has faced an increasing occurrence of renal disease. Hypertension seems to be a late manifestation. The As the aetiology has not been elucidated, the disease is known underlying histopathological feature is tubular atrophy as Chronic Kidney Disease of unknown aetiology (CKDu). and interstitial fibrosis without glomerular involvement This paper covers Sri Lanka’s response to this debilitating and until the late stages of the disease (Athuraliya et al., 2011). often fatal disease, and presents the chronology covering the In the absence of an identifiable causative factor, as in the national response. Further, the response has been covered from case of conventional renal failure, such as hypertension, multiple angles, initially taking the broad national, political, diabetes, snake-bite or leptospirosis, the term ‘Chronic private and international angle. Then a sectoral response Kidney Disease of Unknown aetiology’ (CKDu) was analysis is presented, covering the medical, agriculture, food and nutrition, water, community and social sectors, as well adopted. At present, records at the Epidemiology Unit as research and the media. Multiple action plans have been identify around 20,000 CKDu patients with a population formulated and a consolidated action plan is currently being prevalence rate of 4.7% in the NCP alone. CKDu today executed under HE the President. A brief response analysis is considered a major public health concern. A case is presented at the end. Many a hypothesis regarding the definition for CKDu has been adopted by the Ministry causative agents/risk factors for CKDu has been suggested by of Health (Dassanayake & Herath, 2014), along with researchers. Research compilation on presented hypotheses for screening and clinical management guidelines for causing CKDu in Sri Lanka is also presented. chronic kidney disease (CKD) and CKDu (MOH, 2014). World Health Organization (WHO) (2016) developed the Keywords: Chronic Kidney Disease of Unknown aetiology, surveillance scheme, which was not in place until 2016, Sri Lanka. in response to a need assessment. INTRODUCTION The disease prevalence map has expanded (Figure 1) and presently it occurs in the North Central, North At the turn of the new millennium, the North Central Western, Eastern and Uva Provinces of Sri Lanka. Province (NCP) of Sri Lanka had started recording a New foci have appeared and older ones have spread. higher-than-normal number of patients with kidney Responses over a broader spectrum have emerged over disease (Ramachandran, 1994; Kudalugoda Arachchi time. et al., 1999). In the year 2002, Anuradhapura district recorded the highest number of deaths from kidney NATIONAL RESPONSES failure in the island. This section describes the broad response and the next In 2000, a screening programme provided evidence section addresses the specific sectoral responses. Table 1 on the emerging disease with the first cohort study gives the national response in chronological order. (Athuraliya et al., 2009). The affected individuals Corresponding author (sachie@costi.gov.lk) This article is published under the Creative Commons CC-BY-ND License (http://creativecommons.org/licenses/ by-nd/4.0/).This license permits use, distribution and reproduction, commercial and non-commercial, provided that the original work is properly cited and is not changed anyway. 84 A. A. P. de Alwis and P. V. S. Panawala Figure 1: Change in the prevalence of CKDu in Sri Lanka from 2002 to 2018 Source: Asanga Ranasinghe 2019, personal communication, 7 May. December 2019 Sri Lanka Journal of Social Sciences 42 (2) A review of the national response to CKDu in Sri Lanka 85 Table 1: Chronology of national response to CKDu Year Description 1992 Assistant Government Agent from Padaviya, NCP first informed Anuradhapura Hospital about his observation of an unusual number of deaths in his community 2000 First field report by a hydrogeologist on the water quality and specific kidney diseases in Morawewa–Gomarankadavela–Kepitigolewa areas (Lapègue, 2000) 2002 Establishment of the Renal Care and Research Centre at Medawachchiya 2006 First hypothesis on CKDu published in the Ceylon Medical Journal (Peiris-John, R. J. et al., 2006) 2007 Minister of Health and Nutrition requests technical assistance from the World Health Organization (WHO), Geneva 2008 National Kidney Foundation of Sri Lanka (NGO) launched a programme to establish a Renal Care and Renal Research Centre at Anuradhapura General Hospital as a public- private venture 7 May MOH and WHO Joint Seminar on Unusual Occurrences of Chronic Kidney Disease in Sri Lanka, Blood Bank Auditorium, Colombo 3–5 August WHO consultation meeting on the research proposal to Government of Sri Lanka (GoSL), Giritale September Water Resources and Research Training Centre opened at Anuradhapura (built by Brandix and handed over to the Water Resources Board) 2 October WHO partners’ meeting organised by the WHO Country Office seeking donor assistance, Colombo June WHO/National Science Foundation (NSF) joint proposal submitted to the Department of National Planning WHO finalises and launches the national research programme 20 June MOH and WHO joint workshop on implementing a National Cadaver Kidney Transplant Programme in Sri Lanka, Colombo September Renal Prevention and Renal Care Unit established at NCP 22 March First water supply pilot project by the National Water Supply and Drainage Board (NWSDB) based on reverse osmosis (RO) started at Billewa, Anuradhapura district as a World Water Day event 11 March Sri Lanka Medical Association (SLMA) Research Symposium on Chronic Kidney Disease of unknown aetiology (CKDu) 18 October Inter-ministerial committee appointed to review indiscriminate use of chemical fertilizers and agrochemicals, inter-ministerial officials’ committee appointed for CKDu (ministry secretaries), 4 subcommittees appointed by the ministerial/officials’ committee November Parliamentary advisory committee set up on agriculture focusing on CKDu 23 December First Presidential Task Force on CKDu established to drive the action plan prepared over a 5-year period with the Ministry of Special Projects (MSP) National Renal Registry established (Renal Registry Sri Lanka [website]) Continued- Sri Lanka Journal of Social Sciences 42 (2) December 2019 86 A. A. P. de Alwis and P. V. S. Panawala Continued from page 85 22 December Banned sale of glyphosate, carbofuran, propanil, carbaryl, chlorpyrifos in part of the country 2015 Thirtieth hypothesis on CKDu published (Manthrithilake, 2015) 04 February Cabinet submission on prevention of further spreading of CKD and providing welfare to the present kidney patients and their families, by the Minister of Social Services, Welfare and Livestock Development 11 February Establishment of the second Presidential Task Force on CKDu in the Presidential Secretariat by cabinet decision February Fund-raiser event fer the National Kidney Fund with HE the President in attendance 26 March MOU signed between the Government of Sri Lanka (GoSL) and the Republic of China to construct a nephrology hospital in Polonnaruwa 22 May Workshop on developing an action plan to prevent CKDu by the MSP, Colombo 28 May Organization of Professional Associations (OPA) Think Tank Meeting ― Strategies to arrest the occurrence and spread of CKDu, Hector Kobbekaduwa Research and Training Institute (HARTI), Colombo 15 June Establishment of the Niroga lottery by the National Lotteries Board to raise money for the National Kidney Fund 24 June Establishment of the National Kidney Fund CKDu Prevention Unit of NCP empowered island wide and brought under the MOH 29 July Meeting with foreign dignitaries and organisations at the Presidential Secretariat to request support in eradicating CKDu in Sri Lanka, by HE the President September Opening of the first RO plant established by the second Presidential CKDu Task Force at Welioya 23 October Islandwide ban on use of glyphosate 15 November Suvodaya opening – a half-way home for kidney patients at Sarvodaya district centre, Anuradhapura 16 December National workshop on CKDu roadmap organised by the CKDu Task Force in Colombo 2016 Through Budget proposals, NSF was assigned with supporting research related to four key areas of health importance, one being CKDu. Consequently, the Research Programme on Health Science (RPHS) was initiated by NSF. 15 Feb Task Force convened meeting on National Plan for Chronic Kidney Disease Prevention (2016–2018), Colombo 08–10 March World Kidney Day national function in Medawachchiya, Anuradhapura targeting school children on awareness and screening March GoSL launches the “A Toxin Free Nation” programme – related to the use of agrochemicals and agriculture production 26 April WHO-supported Workshop to Media personnel on CKDu 27-29 April International Expert Consultation on Chronic Kidney Disease of unknown aetiology 10 May WHO-supported Workshop to Senior Media Personnel on CKDu 31 May Handing over of Action Plan and the Way Forward to HE the President 24-25 October WHO-supported panel on finalising case definition and surveillance program July WHO-supported workshop on an updated definition for CKDu July 21 The start of the construction of China-Sri Lanka friendship hospital in Polonnaruwa. This specially targets treating kidney diseases and is expected to be the largest kidney hospital in South Asia Sep 28 Launch of the construction of a state-of-the-art water testing laboratory at University of Peradeniya with the aim of finding a scientific solution to end CKDu. This is a joint Sri Lanka – China endeavour and will be the largest water testing laboratory in South Asia December 2019 Sri Lanka Journal of Social Sciences 42 (2) A review of the national response to CKDu in Sri Lanka 87 Figure 2: WHO Research Programme on National Research Effort for CKDu – summary of WHO research components Source: World Health Organization (2013: p. 10). Government response The Ministry of Special Projects (MSP) too was created, with CKDu as one of the two main areas of As the disease burden grew, the impact on the society also work, and was entrusted with coordinating the task with grew considerably. The initial response was to mobilise other ministries. Subsequently, the First Presidential the state infrastructure. Specific task lists were coming Task Force on CKDu was created to work with the MSP in as recommendations from line ministries which were on the suggested programmes. The State expenditure then consolidated into specific national responses. As per year on CKD/CKDu was more than the budget the impact grew and the aetiology remained unknown provision for higher education, up to 2016 (Sri Lanka, despite studies, the Government requested the WHO for Department of National Budget, 2016). The Government technical assistance. The intentions of the Government response resulted in four ministries in principle (Ministry were twofold ― to review the available data and initiate of Health, Ministry of Agriculture, Ministry of Water a coordinated, multisectoral research effort. The WHO Supply and Drainage, and Ministry of Social Services), acceded and the project was launched with majority of developing and running programmes in support of four the financing (70%) coming through the approval of the specific areas after consolidating the various schemes cabinet via the National Science Foundation. Figure 2 suggested. There had also been recommendations after illustrates the WHO study plan. With the submission of review meetings from professional and scientific bodies the WHO report (World Health Organization, 2013), the in Sri Lanka, namely, the National Academy of Sciences – Sri Lanka (NASSL) and Organization of Professional recommendations (Annex 1) were followed up again, Association (OPA, 2015). with several line ministries playing a key role. Sri Lanka Journal of Social Sciences 42 (2) December 2019 88 A. A. P. de Alwis and P. V. S. Panawala The establishment of Presidential Task Forces CKDu across endemic areas. There is widespread use highlighted the fact that the State understood the urgency of traditional medicine in these endemic areas. Both as well as the importance of centralised coordination. health systems have worked together, for instance, in carrying out awareness. With direct linkages to the The First Presidential Task Force was active for two affected communities, the local government had a larger years and the second is currently in force (Sri Lanka share in the social response than the central government. Presidential Task Force, 2016). The State has specifically Provincial health administration with its network of allocated money, both for response and research, through hospitals are much more closer to the disease hot spots. the national budget, as it has identified CKDu as a national emergency. These funds are in addition to what The provincial health ministry at NCP has set up the has been received from donor agencies. Renal Prevention and Renal Care Unit with a medical officer, two research assistants and a health education Setting up of the National Kidney Fund (de Silva, officer. The Unit initiated the development of a database 2015) by the Government enables donations to be made with the use of Geographical Information Systems (GIS) by interested donors, organisations and well-wishers. technology. Other provinces have not emulated this. The Fund also receives 10% of the proceedings from the National Lottery “Niroga”. A large number of government extension workers Political response support various sectors at the local level (from public health inspectors to enterprise development officers). As the disease prevalence was found to be higher in the However, in order to drive interventions at the ground poor socioeconomic segment and farming community, level, effective coordination with suitable empowerment there was a direct response from politicians, irrespective has been missing, as these individuals come under of party affiliations. Observing the magnitude and growth different line ministries. Indigenous medical practitioners of the problem, successive governments worked towards have implemented various programmes related to the seeking for a solution as well as providing support to management of ill-health and health promotion with the affected communities. The mechanism for this was regard to CKDu at the grass-root level. Ayurvedic primarily through the line ministries and seeking overseas practitioners are sensitive to the proposal that the use assistance by raising the issue at every opportunity. For of aristolochic acid may be a causal factor. The local those who were not in power, the pathway for action was government supports community-based organisations to pressurise the Government to respond by highlighting (CBOs) that work with people affected by CKDu at the issues at the ground level. village level. Private sector response The political establishment acted speedily in imposing a ban on pesticides, especially, the herbicide, The private sector has supported some of the activities of glyphosate. Sri Lanka became the second country in the the ministerial action plans. Principally, the private sector world to enact a complete ban. The technical process has engaged in the supply of filtration devices, having followed by the Pesticide Technical Advisory Committee seeing the role it can play in the provision of potable has not been published. There was no specific instance of water. The private sector has been increasingly engaged the political system making use of professional opinion in supply of Reverse Osmosis (RO) machines to home in a collective manner (Sri Lanka, National Academy of filtration systems. An example from the agriculture sector Sciences, Sri Lanka, 2013). Professionals from specific is the development of a biofilm biofertilizer production sectors were well-represented in the various committees facility by a private company (Biofilm, 2016), based setup by the Government and they had the opportunity to on research from the National Institute of Fundamental influence decision-makers in taking correct and scientific Studies. This is an innovative approach to improve decisions. The President has appointed two popular soil fertility without resorting to chemical fertilizers. A Sri Lankan sportsmen as brand ambassadors to involve percentage of the sales go to the National Kidney Fund. in fund raising activities to strengthen the Kidney Fund The Water Resources and Research Training Institute that is being operated by the Presidential Task Force. of the Water Resources Board at Anuradhapura was supported by a leading textile firm, as a corporate social Local government response responsibility (CSR) activity. This centre is engaged in ground water quality assessment of the NCP since In Sri Lanka’s constitution, health is a devolved subject; 2010. Companies have also supported various medicare thus, the provincial government too has responsibility activities in endemic areas under the CSR function. for health. Local governments have responded to December 2019 Sri Lanka Journal of Social Sciences 42 (2) A review of the national response to CKDu in Sri Lanka 89 International response 1. Access to screening 2. Management of patients CKDu is not unique to Sri Lanka as there are a number 3. Improvement in human resources of countries facing this issue. As the problem escalated, 4. Surveillance of CKD/CKDu patients Sri Lanka reached out to the international community. 5. Community involvement Governments as well as international non-governmental 6. Intersectoral collaboration organisations have extended support, starting with 7. Strengthening evidence-based management Poland, when the WHO brought in the donor community seeking support in Colombo. Recently, significant In 2000, Sri Lanka had only two nephrologists in support has come from the Chinese Academy of Sciences the health service; the number is expected to rise to 30 and the Chinese Government. The latter has pledged to shortly. A nephrologist was first appointed to the NCP build a fully equipped hospital dedicated to renal diseases only in 2009. In 2015, the Epidemiological Unit of the in Pollonnaruwa. The Chinese Academy of Sciences Ministry of Health recommended the adoption of the initiated a research programme with the University of urine protein sulfosalicylic acid precipitation test (SSA) Peradeniya, which has now been completed. A state- or dipstick test for screening in a field setting, based on of-the-art water quality laboratory in the University of the operational feasibility which, however, differs from Peradeniya is about to be launched, supported by China. the method recommended by the Ministry of Health in Researchers and analytical support have been received 2014. Falling back on a less accurate mechanism may be from various countries, such as Sweden, United States, due to lack of finances to support efficient screening. The India, Australia, New Zealand, Germany and Japan. distances that patients have to travel in the NCP, that also Japanese support to the National Water Supply & with much difficulty, are significant and this prevents Drainage Board (NWSDB) resulted in the publication of people from responding to calls for screening. At present, a groundwater quality atlas, which has a separate section there is only one screening vehicle but eight more are on CKDu (Kawakami et al., 2014). planned for 2020. Continuous Ambulatory Peritoneal Dialysis (CAPD) is available today for patients. The Initially, Sri Lanka lacked some of the advanced Government is also bringing in the scheme of cadaver analytical equipment required to carry out sample transplants to meet the demand. Graft survival was found analysis. In the WHO study, some of the analytical to be 93.2% at one year, 88.9% at 3 years and 84.6% investigations were conducted at the Antwerp University, at 5 years in a cohort study done on cadaveric renal Belgium. Samples collected during the WHO study were transplants in the Kandy Hospital (Harrischandra et al., stored with the Medical Research Institute for future 2017). requirements. Local researchers have used Japanese facilities for the analysis of heavy metals, biopsy As time passed without the emergence of a clear studies, etc. This situation has changed today with the medical answer, some patients have shifted back to availability of advanced instrumentation facilities at the indigenous medicine. There are also instances of Sri Lanka Nanotechnology Institute as well as with some communities seeking solutions through ritual practices. universities (e.g. Peradeniya, Colombo). Water supply The Water Supply Project, launched in 2016 for Water has been linked to the disease by many a researcher. providing piped water to endemic areas by the Ministry Liyanage & Jayathilake (2009) reported that there were of City Planning and Water Supply, is supported by disease-free pockets. The case of Gonamariyawa and Japanese aid. Participation of the diplomatic community Medawachchiya is an example. The conditions between can be witnessed at some of the State-supported events directed at CKDu. The Government considers this as an Medawachchiya and Gonamariyawa vary in one aspect encouraging sign of a positive international response. ― the source of water to the community. The community at Gonamariyawa uses a spring well. Anuradhapura town is also free of CKDu. This area is served by piped water SECTORAL RESPONSES sourced from three tanks. Dissanayake et al. (2012) demonstrated that CKDu was geographically distributed Health sector in five areas of Sri Lanka. The affected villages were The response of the health sector has been primarily located below the level of reservoirs and canals, three-fold; prevent, detect and manage. The seven indicating the possibility of irrigated water draining strategies of the Ministry of Health regarding CKD/ to shallow wells, which serve as the main sources of CKDu are as follows: drinking water. Gunatilake & Udeshani (2019) found Sri Lanka Journal of Social Sciences 42 (2) December 2019 90 A. A. P. de Alwis and P. V. S. Panawala poor water quality, mainly in CKDu prevalence areas, place (S. Sumanaweera 2018, personal communication, in Monaragala district. Thus, at an early stage of the March). disease, the disease-water nexus was identified to direct No authoritative study is available on the technology much of the response. option most suitable at ground level to provide quality water. Jayaweera et al. (2016) have considered Clinicians have noted the possibility of delaying nanofiltration. Rathnayake et al. (2016) have examined the progression of the disease if the patient is supplied the use of domestic RO systems. The preferred choice with clean drinking water. Methods such as rainwater- at present is the RO technology, and the government harvesting systems, reverse osmosis (RO) systems, has directly identified RO as the method of choice and and systems based on electrocoagulation have been allocated Rs. 900 million for it under the 2014 National implemented at the village-level for water supply. Budget. Jayasinghe et al. (2015) carried out a monitoring Individual household-level water filter units are also study of RO system applications in CKDu-endemic popular. Most communities in this region are familiar areas and identified some shortcomings. The main with household filter units, as work was earlier done on recommendations were streamlining the installation clay-based filters to support defluoridisation to counter mechanism, proper pre and post-locational evaluation the prevalence of dental and skeletal fluorosis, and and retentate management, and the broader health issues fluoride is still considered a causative agent for CKDu of drinking pure RO water (without a remineralisation as well. It is, however, known that the adoption of clay- stage). In many an instance what had been observed based filters did not find widespread acceptance. was direct discharge of retentate to the ground. Other recommendations were as follows: The Ministry of City Planning and Water Supply, together with the NWSDB and the National Community 1. Carry out investigative research urgently on the Water Trust, have short, medium and long-term plans to suspected health impacts of drinking RO water. provide safe drinking water. The short-term strategy has been to provide CKDu-affected areas with good quality 2. Develop a mechanism for supply of clean water on water for drinking and cooking purposes (a per capita a large scale, especially for CKDu-affected areas as supply of 5L per day). The accepted short-term processes well as to other areas with water scarcity. are as follows: 3. Revive the ancient tank system in the dry zone of the 1. Establishing small RO plants to purify groundwater country in order to supply non-contaminated water, from wells or bore holes and supply the community especially from agrochemicals. using bowsers. These units will be operated by community-based organisations (CBOs); In addition to RO systems, the NWSDB has provided 618 Grama Niladhari divisions with bowser water, 2. Providing bowser supply from existing water supply where 4,090 bowser supply points are in operation schemes; (S. Sumanaweera 2018, personal communication, March). In addition, the pipeline of the existing 3. Extending services whenever possible from existing water supply system has been extended by 518 km piped water supply services; (S. Sumanaweera 2018, personal communication, March). 4. Rainwater harvesting when bowser supply is uneconomical. Agriculture sector According to the NWSDB, following installation of Since the 1940s, fertilizers and pesticides have been the RO project at Billewa, the health status of patients used for agriculture in Sri Lanka. In 1962, subsidy has improved and some have even recovered subsequent schemes were introduced in agriculture. Sri Lanka is a to receiving quality water. However, no proper study significant user of both fertilizers and pesticides. There to prove the fact was carried out. At present, there are is a perception that since the subsidy of Rs. 350 per kg 156 RO plants at the village-level, mostly operated started in 2005, the quality of the incoming material through CBOs; 271 schools have also been equipped has deteriorated, whereas the application rates have with RO systems. The NWSDB also has a well- increased. Thus, when the “mystery disease” appeared, a screening programme. The Lanka Rainwater Harvesting direct linkage was made to the use of chemical fertilizers Forum established the first scheme at Polpitigama and pesticides. The concept of “poison-free foods” (Kurunagala district) where 150 tanks were installed. (meaning foods without hazardous chemicals in them) is appealing and a three-year national programme ‛A Toxin At present, 2008 rainwater-harvesting systems are in December 2019 Sri Lanka Journal of Social Sciences 42 (2) A review of the national response to CKDu in Sri Lanka 91 Free Nation’ has been launched by the GoSL. For quite a Education Bureau of the Ministry of Health has designed while, the use of compost for agriculture was promoted, a communication strategy. At present, the local health and poor-quality compost had prevented the adoption departments conduct educational programmes through of compost from municipal waste compost-sites being village health committees. accepted in agriculture. As an answer to limiting the occurrence of CKDu, in 2014, the Ministry of Special Considering that students are affected directly when a Projects promoted the cultivation of traditional rice family member has CKDu, education with psychosocial varieties over 50000 acres in the NCP. These varieties support is necessary. No specific curricular measures or are resistant to pests and believed to also possess some local school-level responses could be identified. medicinal value. Social sector The Food and Agriculture Organization (FAO) has helped to establish a state-of-the-art laboratory in the CKDu is prevalent largely in the age group of 30-60 Office of the Registrar of Pesticides, which should be years. With the breadwinner of the family affected, able to support more active analytical interventions. In the whole family is impacted. There is consequently addition to glyphosate, three other pesticides that are a significant social burden. Though Sri Lanka has an known to be nephrotoxic have been banned. extended family system as well as support networks, the ability for such mechanisms to be effective diminishes Food and nutrition sector in the case of CKDu, as the disease spreads across the whole village community. The WHO (2013) included the Attention was paid to the food consumption patterns socioeconomic aspects in their lager study. of people in CKDu-endemic areas because of the knowledge of itai–itai disease in Japan and heavy metals At the village level, CBOs provide a framework in rice in Thailand. The emergence of hypothesis of for assistance and support. One development is the cadmium in rice and in freshwater fish (i.e. Tilapia) in establishment of Health Aid Societies. The Divisional these areas caused quite an impact at the local level. Secretariat of the area provides financial assistance to The WHO (2013) highlighted selenium deficiency as a these societies. possible factor and cautioned against the consumption of lotus roots (N. nucifera). Farmers in the field drink Transport services for patients to travel to healthcare from polluted streams and consume sugary tea, which centres are important. The provision of accommodation also have been highlighted as possible causes, as some facilities for those who cannot afford frequent travel researchers believe extra sugar with limited water intake is also an important welfare measure. An example is can be a causative factor (unpublished data). In affected Suvodaya from Sarvodaya in Anuradhapura. There was a families, lower nutritional levels have been identified. rule that the grant of Rs. 3000 per month per patient from the Ministry of Social Services at the time be stopped The use of low-quality aluminium-based cookware once the patient died, but this rule is in effect since 2015. and lead for soldering these were other issues that were The amount of the grant was also increased to Rs. 5000 identified. This has led to a switch to clay-based cooking st per month per patient from 01 June 2017 only in the utensils and government programmes, such as the endemic areas, and the arrangements are underway to distribution of clay pots to communities by the Ministry provide it to all the patients in the island before the end of Indigenous Medicine. of 2019 (A. Iddawela 2019, personal communication, Production of indigenous rice varieties with known January). resistance to toxicity, which have additional health Community response benefits, is a response by the food and nutrition sector, as stated in the previous section. Two types of community responses could be identified: the response coming from within the immediate community Education sector and that from afar. The latter is primarily philanthropic. The National Kidney Foundation is an option available As the cause of CKDu is unknown, prevention had been for citizens in general and the Anuradhapura Renal identified as a possible course of action. However, it Prevention and Renal Care Centre is an outcome of such is difficult to state what constitutes prevention. As the activities. awareness and knowledge of CKDu grew, there was a need for proactive communication and proper information The disease has had a significant social cost. In on potential risk factors to the community. The Health a family, it is usually the breadwinner who falls ill, Sri Lanka Journal of Social Sciences 42 (2) December 2019 92 A. A. P. de Alwis and P. V. S. Panawala critically affecting the entire family. In a village, families Research is continuing in many places. When are helped by their relatives and can depend on others’ reviewing the published and unpublished literature support. However, when multiple families in close on CKDu in Sri Lanka, it was observed that three proximity are affected, these networks of support are community-based studies reported on the prevalence severely strained, considering the poor socioeconomic of CKDu in endemic and non-endemic areas status that prevails. Mulleriyawa (2015a) has emphasised (Athuraliya et al., 2011; Wanigasuriya et al., 2011; the need for a social worker with an understanding of Jayatilake et al., 2013). Jayasekara et al. (2012) did the ground realities. Indigenous medical practitioners Geographical Information Systems (GIS) and Global as well as religious organisations have contributed. Positioning Systems (GPS) mapping of 11630 patients Farmer communities have their own organisations and in the affected areas. GIS mapping indicated five high villages have rural development societies. The two main prevalent areas in the region, namely, Medawachchiya, appeals from CBOs are usually for financial support and Padaviya, Girandurukotte, Medirigiriya and Nikawewa livelihood opportunities. (Jayasekara et al., 2012). The clinical studies suggested a higher probability of a tubular lesion (Athuraliya et People have volunteered when certain community al., 2009; Athuraliya et al., 2011) and tubulo-interstitial schemes have been established. Mulleriyawa (2015b) disease was the main finding on light microscopy of a reports a pilot project setup within a high CKDu- biopsy study on 26 patients (Athuraliya et al., 2011). prevalence area with the approval of the regional health Nanayakkara et al. (2012) also reported interstitial authorities, where the community was provided with fibrosis and tubular atrophy as the histopathological water from rainwater-harvesting and the cohort was features, based on 57 biopsies. Wijetunge et al. (2013) to be monitored over a period of three years. The staff confirmed this finding as they observed that interstitial of the project comprises volunteers from the affected renal disease was 87% in a case series of 234 patients who community. This project had three objectives: underwent biopsy for confirmation of CKDu between 2004 and 2011 in Kandy and Anuradhapura hospitals. 1. Determine whether improving the quality of drinking Two studies have detected urinary biomarkers, namely, water prevents/mitigates CKDu. alpha-1-microglobulin (A1M) (Nanayakkara et al., 2012) and beta-2-microglobulin (Siriwardhana et al., 2014), 2. Ascertain whether rainwater-harvesting can provide of early renal damage among CKDu patients, while adequate water for drinking and cooking purposes of N-acetyl-beta-D-glucosaminidase (NAG) was elevated a rural household throughout the year. only among patients with stage 5 CKD (Nanayakkara et al., 2012). 3. Develop viable strategies for making health education and agricultural extension more effective The Sri Lanka Institute of Nanotechnology, with at the village level. the support of the Ministry of Science, Technology and Scientific and research response Research, is working on a home filtration unit with the ability to provide clean drinking water. The Nanyang The disease has been researched for over two decades. Technological University of Singapore is providing Sheriff & Janakan (2013) compiled an important membrane technology. Different universities are looking literature repository covering CKDu for the period into this in different ways, according to the University 1998‒2013. The collection covered both peer-reviewed Grants Commission which looked at how the research literature and literature from the open press. With the end community can be mobilised to find a solution, following of the WHO/National Science Foundation project, the the WHO report. Government-allocated research money work did not continue until the Coordinating Secretariat reaches the research community through the National for Science Technology and Innovation (COSTI) enabled Research Council and the National Science Foundation, a digital repository for CKDu under its Basecamp as well both of which have dedicated fund lines available to as the Virtual Information Knowledge System (VIKS). support research in CKDu. While the Basecamp collection is available only to the user group (around 400 who have an active interest in There has been criticism of research based on data engagement with CKDu), the VIKS is available to all from the community and from hospitals being perused (Sri Lanka, COSTI, VIKS, 2016). There is almost no separately, i.e. social studies and medical studies using voluntary participation in bringing information and two different datasets. For example, data pertaining to findings to a central collection. The effort has to be made those who may be accessing indigenous medicine is by those engaged in the task. The repository needs to be usually not available. Interestingly, the WHO (2013) manned by implementers and planners. study reports that more women had the disease, although December 2019 Sri Lanka Journal of Social Sciences 42 (2) A review of the national response to CKDu in Sri Lanka 93 Table 2: Research studies on possible risk factors for CKDu―the compilation of published hypotheses Hypothesis Publication Primary institute for this research Drinking well water Wanigasuriya et al. (2007) Chronic renal failure in North Central Province of University of Sri Lanka: an environmentally induced disease. Sri Jayewardenepura Drinking water in the field Wanigasuriya et al. (2011) Chronic kidney disease of unknown aetiology in -do- Sri Lanka: is cadmium a likely cause? Drinking reservoir water Jayasekera et al. (2012) Effect of concentrated water from reservoirs of high University of Peradeniya prevalence area for CKD of unknown origin in Sri Lanka on mice. Landscape hydrogeology Manthrithilake (2015) CKDu: are we shooting the right target? International Water Management Institute (IWMI) Existing of a synergic effect Wasana et al. (2017) WHO water quality standards Vs Synergic effect(s) of University of Peradeniya especially among Cd, F and fluoride, heavy metals and hardness in drinking water on kidney tissues. hardness of water Snake-bite Wanigasuriya et al. (2007) Chronic renal failure in North Central Province of University of Sri Lanka: an environmentally induced disease. Sri Jayewardenepura Fungal toxins -do- -do- Bacterial toxins -do- -do- Cyanobacterial toxins Dissananyake et al. (2011) The short term effect of cyanobacterial toxin extracts University of Peradeniya on mice kidney. Use of ayurvedic medicines Wanigasuriya et al. (2007) Chronic renal failure in North Central Province of University of Sri Lanka: an environmentally induced disease. Sri Jayewardenepura Being treated for Wanigasuriya et al. (2011) Chronic kidney disease of unknown aetiology in -do- hypertension Sri Lanka: is cadmium a likely cause? Use of non-steroidal Elledge et al. (2014) Chronic kidney disease of unknown aetiology in Sri Lanka: RTI International, North anti-inflammatory drugs quest for understanding and global implications. Carolina (NSAIDs) Genetic predisposition Wanigasuriya et al. (2007) Chronic renal failure in North Central Province of University of Sri Lanka: an environmentally induced disease. Sri Jayewardenepura Smoking Wanigasuriya et al. (2011) Chronic kidney disease of unknown aetiology in -do- Sri Lanka: is cadmium a likely cause? Exposure to sun, heat stress Dissananayake et al. (2012) Renal tubular functions of farmers of high University of Peradeniya and dehydration prevalence area for CKDu. Low selenium or other Jayatilake et al. (2013) Chronic kidney disease of uncertain aetiology: Ministry of Health, micronutrients in the diet prevalence and causative factors in a developing country. Sri Lanka Maternal malnutrition Elledge et al. (2014) Chronic kidney disease of unknown aetiology in Sri Lanka: RTI International, North quest for understanding and global implications. Carolina Low calcium intake -do- -do- Continued- Sri Lanka Journal of Social Sciences 42 (2) December 2019 94 A. A. P. de Alwis and P. V. S. Panawala Continued from page 93 Chronic undernutrition Elledge et al. (2014) Chronic kidney disease of unknown aetiology in Sri Lanka: RTI International, North quest for understanding and global implications. Carolina Low body mass index -do- -do- (BMI) Oxidative stress Sayanthooran et al. (2014) Oxidative stress markers in chronic kidney disease: National Institute of gene expression analysis in a Sri Lankan population. Fundamental Studies (IFS), Kandy Augmenting effect of Siriwardhana et al. (2015) Dehydration and malaria augment the risk of Rajarata University of dehydration and history of developing chronic kidney disease in Sri Lanka. Sri Lanka malaria Exposure to Hanta viral Gamage et al. (2017) Serological evidence of hantavirus infection in University of Peradeniya infection Girandurukotte, an area endemic for chronic kidney disease of unknown aaetiology (CKDu) in Sri Lanka. Organophosphates Peiris-John et al. (2006) Exposure to acetylcholinesterase-inhibiting pesticides University of and chronic renal failure. Sri Jayewardenepura - Pesticides and fertilizers Cadmium Senevirathna (2008) Chronic renal failure among farm families in cascade University of Peradeniya irrigation systems in Sri Lanka associated with elevated dietary cadmium levels in rice and freshwater fish (Tilapia). Fluoride and aluminium Illeperuma et al. (2009) Dissolution of aluminium from substandard utensils -do- under high fluoride stress: a possible risk factor for chronic renal failures in the North-Central province. Prolonged exposure of Jayasekera et al. (2012) The effects from concentrated water on reservoirs of high -do- the kidney to many ionic prevalence areas on CKD of unknown origin in Sri Lanka. species Chemical nephrotoxicity Dahanayake et al. (2012) Presence of high levels of arsenic in internal organs of District General Hospital aggravated by arsenic, deceased patients with chronic kidney disease of unknown aetiology (CKDu): Monaragala, Sri Lanka heavy metals three case reports. Fonseka et al. (2012) Hardness and presence of arsenic in aquifers of selected University of Kelaniya CKDu prevalent and other areas in Sri Lanka. Chemical nephrotoxicity Jayasumana et al. (2013) Possible link of chronic arsenic toxicity with chronic Rajarata University of aggravated by chronic kidney disease of unknown aetiology in Sri Lanka. Sri Lanka repeated dehydration. Responsible chemicals are arsenic, heavy metals, herbicides Arsenic and cadmium Jayatilake et al. (2013) Chronic kidney disease of uncertain aetiology: Ministry of Health, prevalence and causative factors in a developing country. Sri Lanka Rajarata University of Glyphosate, hard water and Jayasumana et al. (2014) Glyphosate, hard water and nephrotoxic metals: are nephrotoxic metals they the culprits behind the epidemic of chronic kidney disease of unknown Sri Lanka aetiology in Sri Lanka? Multifactoral origin Wanigasuriya (2012) Aetiological factors of chronic kidney disease in the North University of Central Province of Sri Lanka: a review of evidence to-date Sri Jayewardenepura The Institute to which the Principal Author of each paper is affiliated to. December 2019 Sri Lanka Journal of Social Sciences 42 (2) A review of the national response to CKDu in Sri Lanka 95 till then the perception was that mainly male farmers CONCLUSION in the region were affected, and there are many studies The response to CKDu from all sectors has been that confirm the earlier observation (Jayasekara et al., considerable. In most cases, impact of the responses has 2012; Jayasekara et al., 2015; Wanigasuriya et al., 2011; not been assessed, as in the case of water supply. While Wanigasuriya, 2011), while some other studies indicate state-of-the-art renal facilities have been established, the that there is no significant difference between male: area of social support has received much less attention. female ratio being 1.3:1 (Athuraliya et al., 2006 as cited Communication need to be much more responsible and by Gunatilake et al., 2014). Redmon et al. (2014) also relevant. The WHO study did not come to a conclusion. have reviewed the Jayatilake et al. (2013) study focusing A critical look at the response indicates a lack of focused on the CKDu case definition, endemic and non-endemic drive in identifying the cause of the disease, which geographic area selection, population sampling design, is the most salient issue. The vision of the current multimedia sample selection, chemical constituent Presidential Task Force is preventing and eradicating selection, field documentation and laboratory analytical ‛CKD’, instead of preventing and eradicating ‛CKDu’. methodologies employed by the study. In reality, preventing and eradicating CKD, which is a The Centre for Education, Research and Training global issue of Non-Communicable Disease is beyond in Kidney diseases (CERTKid) of the University of the scope of a Presidential Task Force. This shows lack Peradeniya has a multisectoral, multidisciplinary of focus. Almost all hypotheses have been examined research programme, set up by funds received from in isolation and not much validation or parallel work the national budget of 2015. It is conducting research have been done. The WHO project identified additional on ways to improve the efficiency of screening and on research areas (renal biopsy study, study on early different biomarkers. There are more than 30 hypotheses markers, animal slaughter house study, cyanobacteria and no definitive agreement on the causal factor/s as yet. study and ochratoxin, p-aminohippuric acid [PAH], and Table 2 provides a list of important research publications aristolochic acid analysis in urine and water), including that have led to these hypotheses along with the primary the planned phase II study (randomised clinical trial to research institute. examine the renal effects with enalapril in adults with CKDu) (Jayathilake et al., 2013), which has now been Gunatilake et al. (2014) critically reviewed the completed and published (Selvarajah et al., 2016). There current scientific evidence of Chronic Kidney Disease of is a need to have quantifiable goals and mobilise funds unknown aetiology (CKDu) but giving more emphasis to ensure execution. The currently available National to the chronic exposure to heavy metals associated with Kidney Fund should be used strategically and quickly by agricultural activities. Therefore, an unbiased meta- putting the plan into action. analysis of the present scientific information is indicated. Water supply is a basic human right. It is ironic that the very province, i.e. NCP, that introduced hydraulic Media response technologies in the ancient period is facing an issue of The nature of the disease and its high impact caused potable water today, as CKDu is linked by many to water interest in and coverage by the media, which has given quality. prominence to most of the hypotheses from the research There is a need to have an open data policy. There programmes without any analysis. Some hypotheses, has been criticism for not sharing data and information which have caused controversy, have received more openly, although a large population group faces this media coverage. These may have caused more confusion problem. Jayasinghe (2014) comments on the CKD- than clarity (Gunawardene, 2012), as some sections of CKDu confusion and the biased sampling, lack of the affected community are not literate. uniform laboratory study procedures and statistical The media could have been responsive in a positive approaches. This statement is not repudiated as most manner. As water was highlighted to be a prominent research stands alone without replication and validation. causal factor, there was the issue of people not drinking A climate of data exchange and collaborative research sufficient quantities due to fear of getting the disease. between the medical and non-medical sectors appears to With another hypothesis of dehydration leading to CKDu, be wanting. there was the need to handle communications more There have been several attempts to develop national professionally. There is also a belief that the likelihood action plans. A coherent strategy and focused action plan of death is higher with dialysis. The local media’s lack of scientific competence is a factor. are important. The recommendations of all these action Sri Lanka Journal of Social Sciences 42 (2) December 2019 96 A. A. P. de Alwis and P. V. S. Panawala Available from: http://www.island.lk/index.php?page_ plans are important and are perhaps valid for good health, cat=article-details&page=article-details&code_title=137016 in their own right, irrespective of CKDu. th [Accessed: 11 April 2016]. A nation-wide surveillance system should be set up. Dissananayake, D. M., Jayasekera, J. M. K. B., Wimalasiri, Currently, the Ministry of Health has 34 sentinel sites R., Ratnayake, I. and Dissanayake, S. (2012) Renal tubular around the country, which report to the Epidemiology functions of farmers of high prevalence area for CKDu, In: Sri Unit. Emerging technologies should be introduced to Lanka Medical Association, Research Symposium on Chronic realize this goal. GIS application and data analytics Kidney Disease of Unknown Aetiology (CKDu), Colombo, Sri need to be markedly strengthened. CKDu provides an Lanka 11 March 2012, Colombo: Sri Lanka Medical Association opportunity to understand and execute better response [Online] Available from: https://issuu.com/slmanews/docs/ th mechanisms, and the national response needs to be aware ckdu_abstract_book [Accessed: 8 December 2012]. of the potential of positive and innovative responses. DOI: https://doi.org/10.4038/sljas.v24i1.7562 Considering the time that has passed since the Dissananyake, D. M., Jayasekera, J. M. K. B., Ratnayake, P., disease was first diagnosed in mid-1990s, the enormity Wickramasinghe, W. and Radella, Y. A. (2011) The Short- of the burden and the continuously accumulating death term Effect of Cyanobacterial Toxin Extracts on Mice Kidney, Proceedings of the Peradeniya University Research Sessions, toll, there is a definite need for the Sri Lankan national response to be informed by proper assessment of latest research on the subject. Dissanayake, D. M., Jayasekera, J. K. M. B. Adhikari, S. 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A., Sivakanesan, R., Abeysekara, http://opasrilanka.org/wp-content/uploads/2017/09/2016- th T., Nugegoda, D. B. and Weerakoon, K. G. (2014) Is the staple February-newsletter.pdf [Accessed: 12 December 2017]. December 2019 Sri Lanka Journal of Social Sciences 42 (2) A review of the national response to CKDu in Sri Lanka 99 diet eaten in Medawachchiya, Sri Lanka, a predisposing factor Wanigasuriya, K. P., Peiris-John, R. J. and Wickremasinghe, R. (2011) Chronic kidney disease of unknown aetiology in in the development of chronic kidney disease of unknown Sri Lanka: is cadmium a likely cause?, BMC Nephrology, aetiology? A comparison based on urinary beta2-microglobulin 12(1), pp: 32-38. measurements, BMC Nephrology, 15(1), 103. DOI: https://doi.org/10.1186/1471-2369-12-32 DOI: https://doi.org/10.1186/1471-2369-15-103 Wanigasuriya, K. P., Peiris-John, R. J., Wickremasinghe, R. Sri Lanka, COSTI, Virtual Information Knowledge System and Hittarage, A. 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(2012) Aetiological factors of Chronic Kidney th Available from: http://lankarainwater.org/wp/ [Accessed: 30 Disease in the North Central Province of Sri Lanka: A review March 2016]. of evidence to-date, Journal of the College of Community Physicians of Sri Lanka, 17(1), pp: 21-42. Sri Lanka, Ministry of Health (2014) Screening guidelines– DOI: https://doi.org/10.4038/jccpsl.v17i1.4931 chronic kidney disease Sri Lanka, Colombo: Epidemiology Unit, Ministry of Health. Wasana, H. M. S., Perera, G. D. R. K., Gunawardena, P. de S., Fernando, P. S. and Bandara, J. (2017) WHO water quality Sri Lanka, National Academy of Sciences (2015) NASSL standards vs Synergic effect(s) of fluoride, heavy metals and Statement on the Banning of Glyphosate [Online] Available hardness in drinking water on kidney tissues, Scientific Reports, from: https://nassl.org/nassl-statement-on-the-banning-of- 7, 42516. th glyphosate/ [Accessed: 30 March 2017]. DOI: https://doi.org/10.1038/srep42516 Sri Lanka, National Academy of Sciences (2013) Proceedings Wijetunge, S., Ratnatunga, N. V., Abeysekera, D. T., Wazil, A. W., Selvarajah, M. and Ratnatunga, C. N. (2013) Retrospective of the Symposium on Chronic Kidney Disease of uncertain analysis of renal histology in asymptomatic patients with aaetiology (CKDu) – a scientific basis for future action ,10 probable chronic kidney disease of unknown aetiology in December 2013, Colombo: National Academy of Sciences. Sri Lanka, Ceylon Medical Journal, 58(4), pp:142-147. Sri Lanka, Organization of Professional Association of DOI; https://doi.org/10.4038/cmj.v58i4.6304 Sri Lanka (2015) OPA think tank recommendations to arrest the occurrence and spread of chronic kidney disease of unknown World Health Organization (2016) Workshop report on aetiology (CKDu). ‘Designing a step-wise approach to estimate the burden and to understand the aetiology of CKDu in Sri Lanka’. Sri Lanka, Presidential Task Force (2016) Chronic Kidney Disease Prevention [Online] Available from: http://www. World Health Organization (2013) Investigation and th presidentialtaskforce.gov.lk/en/kidney.html# [Accessed: 30 evaluation of chronic kidney disease of uncertain aetiology, March 2016]. Final report of Grant No. 57445 [Online] Available from: http:// www.indiaenvironmentportal.org.in/files/file/Chronic%20 Kidney%20Disease%20of%20Sri%20Lanka.pdf [Accessed: Sri Lanka, Renal Registry Sri Lanka (2016) [Online] Available th th 30 March 2016]. from: http://renal.nicslk.com/ [Accessed: 30 March 2016]. Sri Lanka Journal of Social Sciences 42 (2) December 2019 100 A. A. P. de Alwis and P. V. S. Panawala Annex 1: The GoSL/WHO study recommendations (Recommendations to address CKDu based on the WHO final study report) 1. Since the determinants of CKDu lie outside the health sector, it is recommended to set up a high-level interministerial committee, to actively engage Ministries of Agriculture, Water Supply, Irrigation and Social Services to implement multisectoral policy action required to address the problem of CKDu. 2. Despite the water being safe for use, water purification schemes need to be scaled up to provide adequate water to households in the endemic area for drinking and cooking purposes as it is a human rights issue. 3. Strengthen the regulatory framework to improve quality control of imported agrochemicals, particularly with regard to those containing nephrotoxic agents such as Cd and As, amendments to existing legislation, capacity strengthening for implementation and monitoring. 4. Implement and monitor comprehensive public health measures to reduce the exposure of farmers to harmful health effects of agrochemicals through, i) education on the appropriate use of fertilizer ii) compulsory provision of safety clothing, gloves and masks at the point of sale of agrochemicals iii) control of the sale of agrochemicals which are known to be nephrotoxic e.g. Propanil, Chlopyrifos and others iv) education on cooking practices i.e., avoid the use of water from irrigation canals for cooking and drinking, discard water after boiling rice, reduce intake of lotus particularly in families with a history of kidney disease v) education on the importance of adequate water intake and non-smoking. 5. Improve service provision for early detection of CKDu, hypertension and diabetes and appropriate treatment (avoiding nephrotoxic medications) including through close to client services. 6. Increase the financial assistance provided to farmer families affected by CKDu to prevent them from getting more impoverished and malnourished. Inability to purchase food will cause iron, folate, antioxidant and trace metal deficiency which increase susceptibility to harmful effects of heavy metals on the kidney . 7. Increase awareness among Ayurvedic practitioners of the nephrotoxic effects of Aristolochia (sapsanda) and recommend not using it. 8. In the long term, regulate as necessary and facilitate research to; promote the use of alternative fertilizers, reduce heavy metals in soil or make them less available, develop rice strains which require less fertilizer / resistant to pests, reduce pollution of the environment including air pollution. Source: World Health Organization (2013; pp: 315-316). December 2019 Sri Lanka Journal of Social Sciences 42 (2) http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Sri Lanka Journal of Social Sciences Unpaywall

A review of the national response to CKDu in Sri Lanka

Sri Lanka Journal of Social SciencesDec 26, 2019

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Sri Lanka Journal of Social Sciences 2019 42 (2): 83-100 DOI: https://dx.doi.org/10.4038/sljss.v42i2.7966 REVIEW ARTICLE A. A. P. de Alwis and P. V. S. Panawala rd Coordinating Secretariat for Science, Technology and Innovation (COSTI), Ministry of Higher Education, Technology and Innovation, 3 Floor, Sethsiripaya (Stage I), Battaramulla, Sri Lanka. Abstract: Since the mid-1990s, Sri Lanka’s North Central are asymptomatic until late stages of the disease. Province has faced an increasing occurrence of renal disease. Hypertension seems to be a late manifestation. The As the aetiology has not been elucidated, the disease is known underlying histopathological feature is tubular atrophy as Chronic Kidney Disease of unknown aetiology (CKDu). and interstitial fibrosis without glomerular involvement This paper covers Sri Lanka’s response to this debilitating and until the late stages of the disease (Athuraliya et al., 2011). often fatal disease, and presents the chronology covering the In the absence of an identifiable causative factor, as in the national response. Further, the response has been covered from case of conventional renal failure, such as hypertension, multiple angles, initially taking the broad national, political, diabetes, snake-bite or leptospirosis, the term ‘Chronic private and international angle. Then a sectoral response Kidney Disease of Unknown aetiology’ (CKDu) was analysis is presented, covering the medical, agriculture, food and nutrition, water, community and social sectors, as well adopted. At present, records at the Epidemiology Unit as research and the media. Multiple action plans have been identify around 20,000 CKDu patients with a population formulated and a consolidated action plan is currently being prevalence rate of 4.7% in the NCP alone. CKDu today executed under HE the President. A brief response analysis is considered a major public health concern. A case is presented at the end. Many a hypothesis regarding the definition for CKDu has been adopted by the Ministry causative agents/risk factors for CKDu has been suggested by of Health (Dassanayake & Herath, 2014), along with researchers. Research compilation on presented hypotheses for screening and clinical management guidelines for causing CKDu in Sri Lanka is also presented. chronic kidney disease (CKD) and CKDu (MOH, 2014). World Health Organization (WHO) (2016) developed the Keywords: Chronic Kidney Disease of Unknown aetiology, surveillance scheme, which was not in place until 2016, Sri Lanka. in response to a need assessment. INTRODUCTION The disease prevalence map has expanded (Figure 1) and presently it occurs in the North Central, North At the turn of the new millennium, the North Central Western, Eastern and Uva Provinces of Sri Lanka. Province (NCP) of Sri Lanka had started recording a New foci have appeared and older ones have spread. higher-than-normal number of patients with kidney Responses over a broader spectrum have emerged over disease (Ramachandran, 1994; Kudalugoda Arachchi time. et al., 1999). In the year 2002, Anuradhapura district recorded the highest number of deaths from kidney NATIONAL RESPONSES failure in the island. This section describes the broad response and the next In 2000, a screening programme provided evidence section addresses the specific sectoral responses. Table 1 on the emerging disease with the first cohort study gives the national response in chronological order. (Athuraliya et al., 2009). The affected individuals Corresponding author (sachie@costi.gov.lk) This article is published under the Creative Commons CC-BY-ND License (http://creativecommons.org/licenses/ by-nd/4.0/).This license permits use, distribution and reproduction, commercial and non-commercial, provided that the original work is properly cited and is not changed anyway. 84 A. A. P. de Alwis and P. V. S. Panawala Figure 1: Change in the prevalence of CKDu in Sri Lanka from 2002 to 2018 Source: Asanga Ranasinghe 2019, personal communication, 7 May. December 2019 Sri Lanka Journal of Social Sciences 42 (2) A review of the national response to CKDu in Sri Lanka 85 Table 1: Chronology of national response to CKDu Year Description 1992 Assistant Government Agent from Padaviya, NCP first informed Anuradhapura Hospital about his observation of an unusual number of deaths in his community 2000 First field report by a hydrogeologist on the water quality and specific kidney diseases in Morawewa–Gomarankadavela–Kepitigolewa areas (Lapègue, 2000) 2002 Establishment of the Renal Care and Research Centre at Medawachchiya 2006 First hypothesis on CKDu published in the Ceylon Medical Journal (Peiris-John, R. J. et al., 2006) 2007 Minister of Health and Nutrition requests technical assistance from the World Health Organization (WHO), Geneva 2008 National Kidney Foundation of Sri Lanka (NGO) launched a programme to establish a Renal Care and Renal Research Centre at Anuradhapura General Hospital as a public- private venture 7 May MOH and WHO Joint Seminar on Unusual Occurrences of Chronic Kidney Disease in Sri Lanka, Blood Bank Auditorium, Colombo 3–5 August WHO consultation meeting on the research proposal to Government of Sri Lanka (GoSL), Giritale September Water Resources and Research Training Centre opened at Anuradhapura (built by Brandix and handed over to the Water Resources Board) 2 October WHO partners’ meeting organised by the WHO Country Office seeking donor assistance, Colombo June WHO/National Science Foundation (NSF) joint proposal submitted to the Department of National Planning WHO finalises and launches the national research programme 20 June MOH and WHO joint workshop on implementing a National Cadaver Kidney Transplant Programme in Sri Lanka, Colombo September Renal Prevention and Renal Care Unit established at NCP 22 March First water supply pilot project by the National Water Supply and Drainage Board (NWSDB) based on reverse osmosis (RO) started at Billewa, Anuradhapura district as a World Water Day event 11 March Sri Lanka Medical Association (SLMA) Research Symposium on Chronic Kidney Disease of unknown aetiology (CKDu) 18 October Inter-ministerial committee appointed to review indiscriminate use of chemical fertilizers and agrochemicals, inter-ministerial officials’ committee appointed for CKDu (ministry secretaries), 4 subcommittees appointed by the ministerial/officials’ committee November Parliamentary advisory committee set up on agriculture focusing on CKDu 23 December First Presidential Task Force on CKDu established to drive the action plan prepared over a 5-year period with the Ministry of Special Projects (MSP) National Renal Registry established (Renal Registry Sri Lanka [website]) Continued- Sri Lanka Journal of Social Sciences 42 (2) December 2019 86 A. A. P. de Alwis and P. V. S. Panawala Continued from page 85 22 December Banned sale of glyphosate, carbofuran, propanil, carbaryl, chlorpyrifos in part of the country 2015 Thirtieth hypothesis on CKDu published (Manthrithilake, 2015) 04 February Cabinet submission on prevention of further spreading of CKD and providing welfare to the present kidney patients and their families, by the Minister of Social Services, Welfare and Livestock Development 11 February Establishment of the second Presidential Task Force on CKDu in the Presidential Secretariat by cabinet decision February Fund-raiser event fer the National Kidney Fund with HE the President in attendance 26 March MOU signed between the Government of Sri Lanka (GoSL) and the Republic of China to construct a nephrology hospital in Polonnaruwa 22 May Workshop on developing an action plan to prevent CKDu by the MSP, Colombo 28 May Organization of Professional Associations (OPA) Think Tank Meeting ― Strategies to arrest the occurrence and spread of CKDu, Hector Kobbekaduwa Research and Training Institute (HARTI), Colombo 15 June Establishment of the Niroga lottery by the National Lotteries Board to raise money for the National Kidney Fund 24 June Establishment of the National Kidney Fund CKDu Prevention Unit of NCP empowered island wide and brought under the MOH 29 July Meeting with foreign dignitaries and organisations at the Presidential Secretariat to request support in eradicating CKDu in Sri Lanka, by HE the President September Opening of the first RO plant established by the second Presidential CKDu Task Force at Welioya 23 October Islandwide ban on use of glyphosate 15 November Suvodaya opening – a half-way home for kidney patients at Sarvodaya district centre, Anuradhapura 16 December National workshop on CKDu roadmap organised by the CKDu Task Force in Colombo 2016 Through Budget proposals, NSF was assigned with supporting research related to four key areas of health importance, one being CKDu. Consequently, the Research Programme on Health Science (RPHS) was initiated by NSF. 15 Feb Task Force convened meeting on National Plan for Chronic Kidney Disease Prevention (2016–2018), Colombo 08–10 March World Kidney Day national function in Medawachchiya, Anuradhapura targeting school children on awareness and screening March GoSL launches the “A Toxin Free Nation” programme – related to the use of agrochemicals and agriculture production 26 April WHO-supported Workshop to Media personnel on CKDu 27-29 April International Expert Consultation on Chronic Kidney Disease of unknown aetiology 10 May WHO-supported Workshop to Senior Media Personnel on CKDu 31 May Handing over of Action Plan and the Way Forward to HE the President 24-25 October WHO-supported panel on finalising case definition and surveillance program July WHO-supported workshop on an updated definition for CKDu July 21 The start of the construction of China-Sri Lanka friendship hospital in Polonnaruwa. This specially targets treating kidney diseases and is expected to be the largest kidney hospital in South Asia Sep 28 Launch of the construction of a state-of-the-art water testing laboratory at University of Peradeniya with the aim of finding a scientific solution to end CKDu. This is a joint Sri Lanka – China endeavour and will be the largest water testing laboratory in South Asia December 2019 Sri Lanka Journal of Social Sciences 42 (2) A review of the national response to CKDu in Sri Lanka 87 Figure 2: WHO Research Programme on National Research Effort for CKDu – summary of WHO research components Source: World Health Organization (2013: p. 10). Government response The Ministry of Special Projects (MSP) too was created, with CKDu as one of the two main areas of As the disease burden grew, the impact on the society also work, and was entrusted with coordinating the task with grew considerably. The initial response was to mobilise other ministries. Subsequently, the First Presidential the state infrastructure. Specific task lists were coming Task Force on CKDu was created to work with the MSP in as recommendations from line ministries which were on the suggested programmes. The State expenditure then consolidated into specific national responses. As per year on CKD/CKDu was more than the budget the impact grew and the aetiology remained unknown provision for higher education, up to 2016 (Sri Lanka, despite studies, the Government requested the WHO for Department of National Budget, 2016). The Government technical assistance. The intentions of the Government response resulted in four ministries in principle (Ministry were twofold ― to review the available data and initiate of Health, Ministry of Agriculture, Ministry of Water a coordinated, multisectoral research effort. The WHO Supply and Drainage, and Ministry of Social Services), acceded and the project was launched with majority of developing and running programmes in support of four the financing (70%) coming through the approval of the specific areas after consolidating the various schemes cabinet via the National Science Foundation. Figure 2 suggested. There had also been recommendations after illustrates the WHO study plan. With the submission of review meetings from professional and scientific bodies the WHO report (World Health Organization, 2013), the in Sri Lanka, namely, the National Academy of Sciences – Sri Lanka (NASSL) and Organization of Professional recommendations (Annex 1) were followed up again, Association (OPA, 2015). with several line ministries playing a key role. Sri Lanka Journal of Social Sciences 42 (2) December 2019 88 A. A. P. de Alwis and P. V. S. Panawala The establishment of Presidential Task Forces CKDu across endemic areas. There is widespread use highlighted the fact that the State understood the urgency of traditional medicine in these endemic areas. Both as well as the importance of centralised coordination. health systems have worked together, for instance, in carrying out awareness. With direct linkages to the The First Presidential Task Force was active for two affected communities, the local government had a larger years and the second is currently in force (Sri Lanka share in the social response than the central government. Presidential Task Force, 2016). The State has specifically Provincial health administration with its network of allocated money, both for response and research, through hospitals are much more closer to the disease hot spots. the national budget, as it has identified CKDu as a national emergency. These funds are in addition to what The provincial health ministry at NCP has set up the has been received from donor agencies. Renal Prevention and Renal Care Unit with a medical officer, two research assistants and a health education Setting up of the National Kidney Fund (de Silva, officer. The Unit initiated the development of a database 2015) by the Government enables donations to be made with the use of Geographical Information Systems (GIS) by interested donors, organisations and well-wishers. technology. Other provinces have not emulated this. The Fund also receives 10% of the proceedings from the National Lottery “Niroga”. A large number of government extension workers Political response support various sectors at the local level (from public health inspectors to enterprise development officers). As the disease prevalence was found to be higher in the However, in order to drive interventions at the ground poor socioeconomic segment and farming community, level, effective coordination with suitable empowerment there was a direct response from politicians, irrespective has been missing, as these individuals come under of party affiliations. Observing the magnitude and growth different line ministries. Indigenous medical practitioners of the problem, successive governments worked towards have implemented various programmes related to the seeking for a solution as well as providing support to management of ill-health and health promotion with the affected communities. The mechanism for this was regard to CKDu at the grass-root level. Ayurvedic primarily through the line ministries and seeking overseas practitioners are sensitive to the proposal that the use assistance by raising the issue at every opportunity. For of aristolochic acid may be a causal factor. The local those who were not in power, the pathway for action was government supports community-based organisations to pressurise the Government to respond by highlighting (CBOs) that work with people affected by CKDu at the issues at the ground level. village level. Private sector response The political establishment acted speedily in imposing a ban on pesticides, especially, the herbicide, The private sector has supported some of the activities of glyphosate. Sri Lanka became the second country in the the ministerial action plans. Principally, the private sector world to enact a complete ban. The technical process has engaged in the supply of filtration devices, having followed by the Pesticide Technical Advisory Committee seeing the role it can play in the provision of potable has not been published. There was no specific instance of water. The private sector has been increasingly engaged the political system making use of professional opinion in supply of Reverse Osmosis (RO) machines to home in a collective manner (Sri Lanka, National Academy of filtration systems. An example from the agriculture sector Sciences, Sri Lanka, 2013). Professionals from specific is the development of a biofilm biofertilizer production sectors were well-represented in the various committees facility by a private company (Biofilm, 2016), based setup by the Government and they had the opportunity to on research from the National Institute of Fundamental influence decision-makers in taking correct and scientific Studies. This is an innovative approach to improve decisions. The President has appointed two popular soil fertility without resorting to chemical fertilizers. A Sri Lankan sportsmen as brand ambassadors to involve percentage of the sales go to the National Kidney Fund. in fund raising activities to strengthen the Kidney Fund The Water Resources and Research Training Institute that is being operated by the Presidential Task Force. of the Water Resources Board at Anuradhapura was supported by a leading textile firm, as a corporate social Local government response responsibility (CSR) activity. This centre is engaged in ground water quality assessment of the NCP since In Sri Lanka’s constitution, health is a devolved subject; 2010. Companies have also supported various medicare thus, the provincial government too has responsibility activities in endemic areas under the CSR function. for health. Local governments have responded to December 2019 Sri Lanka Journal of Social Sciences 42 (2) A review of the national response to CKDu in Sri Lanka 89 International response 1. Access to screening 2. Management of patients CKDu is not unique to Sri Lanka as there are a number 3. Improvement in human resources of countries facing this issue. As the problem escalated, 4. Surveillance of CKD/CKDu patients Sri Lanka reached out to the international community. 5. Community involvement Governments as well as international non-governmental 6. Intersectoral collaboration organisations have extended support, starting with 7. Strengthening evidence-based management Poland, when the WHO brought in the donor community seeking support in Colombo. Recently, significant In 2000, Sri Lanka had only two nephrologists in support has come from the Chinese Academy of Sciences the health service; the number is expected to rise to 30 and the Chinese Government. The latter has pledged to shortly. A nephrologist was first appointed to the NCP build a fully equipped hospital dedicated to renal diseases only in 2009. In 2015, the Epidemiological Unit of the in Pollonnaruwa. The Chinese Academy of Sciences Ministry of Health recommended the adoption of the initiated a research programme with the University of urine protein sulfosalicylic acid precipitation test (SSA) Peradeniya, which has now been completed. A state- or dipstick test for screening in a field setting, based on of-the-art water quality laboratory in the University of the operational feasibility which, however, differs from Peradeniya is about to be launched, supported by China. the method recommended by the Ministry of Health in Researchers and analytical support have been received 2014. Falling back on a less accurate mechanism may be from various countries, such as Sweden, United States, due to lack of finances to support efficient screening. The India, Australia, New Zealand, Germany and Japan. distances that patients have to travel in the NCP, that also Japanese support to the National Water Supply & with much difficulty, are significant and this prevents Drainage Board (NWSDB) resulted in the publication of people from responding to calls for screening. At present, a groundwater quality atlas, which has a separate section there is only one screening vehicle but eight more are on CKDu (Kawakami et al., 2014). planned for 2020. Continuous Ambulatory Peritoneal Dialysis (CAPD) is available today for patients. The Initially, Sri Lanka lacked some of the advanced Government is also bringing in the scheme of cadaver analytical equipment required to carry out sample transplants to meet the demand. Graft survival was found analysis. In the WHO study, some of the analytical to be 93.2% at one year, 88.9% at 3 years and 84.6% investigations were conducted at the Antwerp University, at 5 years in a cohort study done on cadaveric renal Belgium. Samples collected during the WHO study were transplants in the Kandy Hospital (Harrischandra et al., stored with the Medical Research Institute for future 2017). requirements. Local researchers have used Japanese facilities for the analysis of heavy metals, biopsy As time passed without the emergence of a clear studies, etc. This situation has changed today with the medical answer, some patients have shifted back to availability of advanced instrumentation facilities at the indigenous medicine. There are also instances of Sri Lanka Nanotechnology Institute as well as with some communities seeking solutions through ritual practices. universities (e.g. Peradeniya, Colombo). Water supply The Water Supply Project, launched in 2016 for Water has been linked to the disease by many a researcher. providing piped water to endemic areas by the Ministry Liyanage & Jayathilake (2009) reported that there were of City Planning and Water Supply, is supported by disease-free pockets. The case of Gonamariyawa and Japanese aid. Participation of the diplomatic community Medawachchiya is an example. The conditions between can be witnessed at some of the State-supported events directed at CKDu. The Government considers this as an Medawachchiya and Gonamariyawa vary in one aspect encouraging sign of a positive international response. ― the source of water to the community. The community at Gonamariyawa uses a spring well. Anuradhapura town is also free of CKDu. This area is served by piped water SECTORAL RESPONSES sourced from three tanks. Dissanayake et al. (2012) demonstrated that CKDu was geographically distributed Health sector in five areas of Sri Lanka. The affected villages were The response of the health sector has been primarily located below the level of reservoirs and canals, three-fold; prevent, detect and manage. The seven indicating the possibility of irrigated water draining strategies of the Ministry of Health regarding CKD/ to shallow wells, which serve as the main sources of CKDu are as follows: drinking water. Gunatilake & Udeshani (2019) found Sri Lanka Journal of Social Sciences 42 (2) December 2019 90 A. A. P. de Alwis and P. V. S. Panawala poor water quality, mainly in CKDu prevalence areas, place (S. Sumanaweera 2018, personal communication, in Monaragala district. Thus, at an early stage of the March). disease, the disease-water nexus was identified to direct No authoritative study is available on the technology much of the response. option most suitable at ground level to provide quality water. Jayaweera et al. (2016) have considered Clinicians have noted the possibility of delaying nanofiltration. Rathnayake et al. (2016) have examined the progression of the disease if the patient is supplied the use of domestic RO systems. The preferred choice with clean drinking water. Methods such as rainwater- at present is the RO technology, and the government harvesting systems, reverse osmosis (RO) systems, has directly identified RO as the method of choice and and systems based on electrocoagulation have been allocated Rs. 900 million for it under the 2014 National implemented at the village-level for water supply. Budget. Jayasinghe et al. (2015) carried out a monitoring Individual household-level water filter units are also study of RO system applications in CKDu-endemic popular. Most communities in this region are familiar areas and identified some shortcomings. The main with household filter units, as work was earlier done on recommendations were streamlining the installation clay-based filters to support defluoridisation to counter mechanism, proper pre and post-locational evaluation the prevalence of dental and skeletal fluorosis, and and retentate management, and the broader health issues fluoride is still considered a causative agent for CKDu of drinking pure RO water (without a remineralisation as well. It is, however, known that the adoption of clay- stage). In many an instance what had been observed based filters did not find widespread acceptance. was direct discharge of retentate to the ground. Other recommendations were as follows: The Ministry of City Planning and Water Supply, together with the NWSDB and the National Community 1. Carry out investigative research urgently on the Water Trust, have short, medium and long-term plans to suspected health impacts of drinking RO water. provide safe drinking water. The short-term strategy has been to provide CKDu-affected areas with good quality 2. Develop a mechanism for supply of clean water on water for drinking and cooking purposes (a per capita a large scale, especially for CKDu-affected areas as supply of 5L per day). The accepted short-term processes well as to other areas with water scarcity. are as follows: 3. Revive the ancient tank system in the dry zone of the 1. Establishing small RO plants to purify groundwater country in order to supply non-contaminated water, from wells or bore holes and supply the community especially from agrochemicals. using bowsers. These units will be operated by community-based organisations (CBOs); In addition to RO systems, the NWSDB has provided 618 Grama Niladhari divisions with bowser water, 2. Providing bowser supply from existing water supply where 4,090 bowser supply points are in operation schemes; (S. Sumanaweera 2018, personal communication, March). In addition, the pipeline of the existing 3. Extending services whenever possible from existing water supply system has been extended by 518 km piped water supply services; (S. Sumanaweera 2018, personal communication, March). 4. Rainwater harvesting when bowser supply is uneconomical. Agriculture sector According to the NWSDB, following installation of Since the 1940s, fertilizers and pesticides have been the RO project at Billewa, the health status of patients used for agriculture in Sri Lanka. In 1962, subsidy has improved and some have even recovered subsequent schemes were introduced in agriculture. Sri Lanka is a to receiving quality water. However, no proper study significant user of both fertilizers and pesticides. There to prove the fact was carried out. At present, there are is a perception that since the subsidy of Rs. 350 per kg 156 RO plants at the village-level, mostly operated started in 2005, the quality of the incoming material through CBOs; 271 schools have also been equipped has deteriorated, whereas the application rates have with RO systems. The NWSDB also has a well- increased. Thus, when the “mystery disease” appeared, a screening programme. The Lanka Rainwater Harvesting direct linkage was made to the use of chemical fertilizers Forum established the first scheme at Polpitigama and pesticides. The concept of “poison-free foods” (Kurunagala district) where 150 tanks were installed. (meaning foods without hazardous chemicals in them) is appealing and a three-year national programme ‛A Toxin At present, 2008 rainwater-harvesting systems are in December 2019 Sri Lanka Journal of Social Sciences 42 (2) A review of the national response to CKDu in Sri Lanka 91 Free Nation’ has been launched by the GoSL. For quite a Education Bureau of the Ministry of Health has designed while, the use of compost for agriculture was promoted, a communication strategy. At present, the local health and poor-quality compost had prevented the adoption departments conduct educational programmes through of compost from municipal waste compost-sites being village health committees. accepted in agriculture. As an answer to limiting the occurrence of CKDu, in 2014, the Ministry of Special Considering that students are affected directly when a Projects promoted the cultivation of traditional rice family member has CKDu, education with psychosocial varieties over 50000 acres in the NCP. These varieties support is necessary. No specific curricular measures or are resistant to pests and believed to also possess some local school-level responses could be identified. medicinal value. Social sector The Food and Agriculture Organization (FAO) has helped to establish a state-of-the-art laboratory in the CKDu is prevalent largely in the age group of 30-60 Office of the Registrar of Pesticides, which should be years. With the breadwinner of the family affected, able to support more active analytical interventions. In the whole family is impacted. There is consequently addition to glyphosate, three other pesticides that are a significant social burden. Though Sri Lanka has an known to be nephrotoxic have been banned. extended family system as well as support networks, the ability for such mechanisms to be effective diminishes Food and nutrition sector in the case of CKDu, as the disease spreads across the whole village community. The WHO (2013) included the Attention was paid to the food consumption patterns socioeconomic aspects in their lager study. of people in CKDu-endemic areas because of the knowledge of itai–itai disease in Japan and heavy metals At the village level, CBOs provide a framework in rice in Thailand. The emergence of hypothesis of for assistance and support. One development is the cadmium in rice and in freshwater fish (i.e. Tilapia) in establishment of Health Aid Societies. The Divisional these areas caused quite an impact at the local level. Secretariat of the area provides financial assistance to The WHO (2013) highlighted selenium deficiency as a these societies. possible factor and cautioned against the consumption of lotus roots (N. nucifera). Farmers in the field drink Transport services for patients to travel to healthcare from polluted streams and consume sugary tea, which centres are important. The provision of accommodation also have been highlighted as possible causes, as some facilities for those who cannot afford frequent travel researchers believe extra sugar with limited water intake is also an important welfare measure. An example is can be a causative factor (unpublished data). In affected Suvodaya from Sarvodaya in Anuradhapura. There was a families, lower nutritional levels have been identified. rule that the grant of Rs. 3000 per month per patient from the Ministry of Social Services at the time be stopped The use of low-quality aluminium-based cookware once the patient died, but this rule is in effect since 2015. and lead for soldering these were other issues that were The amount of the grant was also increased to Rs. 5000 identified. This has led to a switch to clay-based cooking st per month per patient from 01 June 2017 only in the utensils and government programmes, such as the endemic areas, and the arrangements are underway to distribution of clay pots to communities by the Ministry provide it to all the patients in the island before the end of Indigenous Medicine. of 2019 (A. Iddawela 2019, personal communication, Production of indigenous rice varieties with known January). resistance to toxicity, which have additional health Community response benefits, is a response by the food and nutrition sector, as stated in the previous section. Two types of community responses could be identified: the response coming from within the immediate community Education sector and that from afar. The latter is primarily philanthropic. The National Kidney Foundation is an option available As the cause of CKDu is unknown, prevention had been for citizens in general and the Anuradhapura Renal identified as a possible course of action. However, it Prevention and Renal Care Centre is an outcome of such is difficult to state what constitutes prevention. As the activities. awareness and knowledge of CKDu grew, there was a need for proactive communication and proper information The disease has had a significant social cost. In on potential risk factors to the community. The Health a family, it is usually the breadwinner who falls ill, Sri Lanka Journal of Social Sciences 42 (2) December 2019 92 A. A. P. de Alwis and P. V. S. Panawala critically affecting the entire family. In a village, families Research is continuing in many places. When are helped by their relatives and can depend on others’ reviewing the published and unpublished literature support. However, when multiple families in close on CKDu in Sri Lanka, it was observed that three proximity are affected, these networks of support are community-based studies reported on the prevalence severely strained, considering the poor socioeconomic of CKDu in endemic and non-endemic areas status that prevails. Mulleriyawa (2015a) has emphasised (Athuraliya et al., 2011; Wanigasuriya et al., 2011; the need for a social worker with an understanding of Jayatilake et al., 2013). Jayasekara et al. (2012) did the ground realities. Indigenous medical practitioners Geographical Information Systems (GIS) and Global as well as religious organisations have contributed. Positioning Systems (GPS) mapping of 11630 patients Farmer communities have their own organisations and in the affected areas. GIS mapping indicated five high villages have rural development societies. The two main prevalent areas in the region, namely, Medawachchiya, appeals from CBOs are usually for financial support and Padaviya, Girandurukotte, Medirigiriya and Nikawewa livelihood opportunities. (Jayasekara et al., 2012). The clinical studies suggested a higher probability of a tubular lesion (Athuraliya et People have volunteered when certain community al., 2009; Athuraliya et al., 2011) and tubulo-interstitial schemes have been established. Mulleriyawa (2015b) disease was the main finding on light microscopy of a reports a pilot project setup within a high CKDu- biopsy study on 26 patients (Athuraliya et al., 2011). prevalence area with the approval of the regional health Nanayakkara et al. (2012) also reported interstitial authorities, where the community was provided with fibrosis and tubular atrophy as the histopathological water from rainwater-harvesting and the cohort was features, based on 57 biopsies. Wijetunge et al. (2013) to be monitored over a period of three years. The staff confirmed this finding as they observed that interstitial of the project comprises volunteers from the affected renal disease was 87% in a case series of 234 patients who community. This project had three objectives: underwent biopsy for confirmation of CKDu between 2004 and 2011 in Kandy and Anuradhapura hospitals. 1. Determine whether improving the quality of drinking Two studies have detected urinary biomarkers, namely, water prevents/mitigates CKDu. alpha-1-microglobulin (A1M) (Nanayakkara et al., 2012) and beta-2-microglobulin (Siriwardhana et al., 2014), 2. Ascertain whether rainwater-harvesting can provide of early renal damage among CKDu patients, while adequate water for drinking and cooking purposes of N-acetyl-beta-D-glucosaminidase (NAG) was elevated a rural household throughout the year. only among patients with stage 5 CKD (Nanayakkara et al., 2012). 3. Develop viable strategies for making health education and agricultural extension more effective The Sri Lanka Institute of Nanotechnology, with at the village level. the support of the Ministry of Science, Technology and Scientific and research response Research, is working on a home filtration unit with the ability to provide clean drinking water. The Nanyang The disease has been researched for over two decades. Technological University of Singapore is providing Sheriff & Janakan (2013) compiled an important membrane technology. Different universities are looking literature repository covering CKDu for the period into this in different ways, according to the University 1998‒2013. The collection covered both peer-reviewed Grants Commission which looked at how the research literature and literature from the open press. With the end community can be mobilised to find a solution, following of the WHO/National Science Foundation project, the the WHO report. Government-allocated research money work did not continue until the Coordinating Secretariat reaches the research community through the National for Science Technology and Innovation (COSTI) enabled Research Council and the National Science Foundation, a digital repository for CKDu under its Basecamp as well both of which have dedicated fund lines available to as the Virtual Information Knowledge System (VIKS). support research in CKDu. While the Basecamp collection is available only to the user group (around 400 who have an active interest in There has been criticism of research based on data engagement with CKDu), the VIKS is available to all from the community and from hospitals being perused (Sri Lanka, COSTI, VIKS, 2016). There is almost no separately, i.e. social studies and medical studies using voluntary participation in bringing information and two different datasets. For example, data pertaining to findings to a central collection. The effort has to be made those who may be accessing indigenous medicine is by those engaged in the task. The repository needs to be usually not available. Interestingly, the WHO (2013) manned by implementers and planners. study reports that more women had the disease, although December 2019 Sri Lanka Journal of Social Sciences 42 (2) A review of the national response to CKDu in Sri Lanka 93 Table 2: Research studies on possible risk factors for CKDu―the compilation of published hypotheses Hypothesis Publication Primary institute for this research Drinking well water Wanigasuriya et al. (2007) Chronic renal failure in North Central Province of University of Sri Lanka: an environmentally induced disease. Sri Jayewardenepura Drinking water in the field Wanigasuriya et al. (2011) Chronic kidney disease of unknown aetiology in -do- Sri Lanka: is cadmium a likely cause? Drinking reservoir water Jayasekera et al. (2012) Effect of concentrated water from reservoirs of high University of Peradeniya prevalence area for CKD of unknown origin in Sri Lanka on mice. Landscape hydrogeology Manthrithilake (2015) CKDu: are we shooting the right target? International Water Management Institute (IWMI) Existing of a synergic effect Wasana et al. (2017) WHO water quality standards Vs Synergic effect(s) of University of Peradeniya especially among Cd, F and fluoride, heavy metals and hardness in drinking water on kidney tissues. hardness of water Snake-bite Wanigasuriya et al. (2007) Chronic renal failure in North Central Province of University of Sri Lanka: an environmentally induced disease. Sri Jayewardenepura Fungal toxins -do- -do- Bacterial toxins -do- -do- Cyanobacterial toxins Dissananyake et al. (2011) The short term effect of cyanobacterial toxin extracts University of Peradeniya on mice kidney. Use of ayurvedic medicines Wanigasuriya et al. (2007) Chronic renal failure in North Central Province of University of Sri Lanka: an environmentally induced disease. Sri Jayewardenepura Being treated for Wanigasuriya et al. (2011) Chronic kidney disease of unknown aetiology in -do- hypertension Sri Lanka: is cadmium a likely cause? Use of non-steroidal Elledge et al. (2014) Chronic kidney disease of unknown aetiology in Sri Lanka: RTI International, North anti-inflammatory drugs quest for understanding and global implications. Carolina (NSAIDs) Genetic predisposition Wanigasuriya et al. (2007) Chronic renal failure in North Central Province of University of Sri Lanka: an environmentally induced disease. Sri Jayewardenepura Smoking Wanigasuriya et al. (2011) Chronic kidney disease of unknown aetiology in -do- Sri Lanka: is cadmium a likely cause? Exposure to sun, heat stress Dissananayake et al. (2012) Renal tubular functions of farmers of high University of Peradeniya and dehydration prevalence area for CKDu. Low selenium or other Jayatilake et al. (2013) Chronic kidney disease of uncertain aetiology: Ministry of Health, micronutrients in the diet prevalence and causative factors in a developing country. Sri Lanka Maternal malnutrition Elledge et al. (2014) Chronic kidney disease of unknown aetiology in Sri Lanka: RTI International, North quest for understanding and global implications. Carolina Low calcium intake -do- -do- Continued- Sri Lanka Journal of Social Sciences 42 (2) December 2019 94 A. A. P. de Alwis and P. V. S. Panawala Continued from page 93 Chronic undernutrition Elledge et al. (2014) Chronic kidney disease of unknown aetiology in Sri Lanka: RTI International, North quest for understanding and global implications. Carolina Low body mass index -do- -do- (BMI) Oxidative stress Sayanthooran et al. (2014) Oxidative stress markers in chronic kidney disease: National Institute of gene expression analysis in a Sri Lankan population. Fundamental Studies (IFS), Kandy Augmenting effect of Siriwardhana et al. (2015) Dehydration and malaria augment the risk of Rajarata University of dehydration and history of developing chronic kidney disease in Sri Lanka. Sri Lanka malaria Exposure to Hanta viral Gamage et al. (2017) Serological evidence of hantavirus infection in University of Peradeniya infection Girandurukotte, an area endemic for chronic kidney disease of unknown aaetiology (CKDu) in Sri Lanka. Organophosphates Peiris-John et al. (2006) Exposure to acetylcholinesterase-inhibiting pesticides University of and chronic renal failure. Sri Jayewardenepura - Pesticides and fertilizers Cadmium Senevirathna (2008) Chronic renal failure among farm families in cascade University of Peradeniya irrigation systems in Sri Lanka associated with elevated dietary cadmium levels in rice and freshwater fish (Tilapia). Fluoride and aluminium Illeperuma et al. (2009) Dissolution of aluminium from substandard utensils -do- under high fluoride stress: a possible risk factor for chronic renal failures in the North-Central province. Prolonged exposure of Jayasekera et al. (2012) The effects from concentrated water on reservoirs of high -do- the kidney to many ionic prevalence areas on CKD of unknown origin in Sri Lanka. species Chemical nephrotoxicity Dahanayake et al. (2012) Presence of high levels of arsenic in internal organs of District General Hospital aggravated by arsenic, deceased patients with chronic kidney disease of unknown aetiology (CKDu): Monaragala, Sri Lanka heavy metals three case reports. Fonseka et al. (2012) Hardness and presence of arsenic in aquifers of selected University of Kelaniya CKDu prevalent and other areas in Sri Lanka. Chemical nephrotoxicity Jayasumana et al. (2013) Possible link of chronic arsenic toxicity with chronic Rajarata University of aggravated by chronic kidney disease of unknown aetiology in Sri Lanka. Sri Lanka repeated dehydration. Responsible chemicals are arsenic, heavy metals, herbicides Arsenic and cadmium Jayatilake et al. (2013) Chronic kidney disease of uncertain aetiology: Ministry of Health, prevalence and causative factors in a developing country. Sri Lanka Rajarata University of Glyphosate, hard water and Jayasumana et al. (2014) Glyphosate, hard water and nephrotoxic metals: are nephrotoxic metals they the culprits behind the epidemic of chronic kidney disease of unknown Sri Lanka aetiology in Sri Lanka? Multifactoral origin Wanigasuriya (2012) Aetiological factors of chronic kidney disease in the North University of Central Province of Sri Lanka: a review of evidence to-date Sri Jayewardenepura The Institute to which the Principal Author of each paper is affiliated to. December 2019 Sri Lanka Journal of Social Sciences 42 (2) A review of the national response to CKDu in Sri Lanka 95 till then the perception was that mainly male farmers CONCLUSION in the region were affected, and there are many studies The response to CKDu from all sectors has been that confirm the earlier observation (Jayasekara et al., considerable. In most cases, impact of the responses has 2012; Jayasekara et al., 2015; Wanigasuriya et al., 2011; not been assessed, as in the case of water supply. While Wanigasuriya, 2011), while some other studies indicate state-of-the-art renal facilities have been established, the that there is no significant difference between male: area of social support has received much less attention. female ratio being 1.3:1 (Athuraliya et al., 2006 as cited Communication need to be much more responsible and by Gunatilake et al., 2014). Redmon et al. (2014) also relevant. The WHO study did not come to a conclusion. have reviewed the Jayatilake et al. (2013) study focusing A critical look at the response indicates a lack of focused on the CKDu case definition, endemic and non-endemic drive in identifying the cause of the disease, which geographic area selection, population sampling design, is the most salient issue. The vision of the current multimedia sample selection, chemical constituent Presidential Task Force is preventing and eradicating selection, field documentation and laboratory analytical ‛CKD’, instead of preventing and eradicating ‛CKDu’. methodologies employed by the study. In reality, preventing and eradicating CKD, which is a The Centre for Education, Research and Training global issue of Non-Communicable Disease is beyond in Kidney diseases (CERTKid) of the University of the scope of a Presidential Task Force. This shows lack Peradeniya has a multisectoral, multidisciplinary of focus. Almost all hypotheses have been examined research programme, set up by funds received from in isolation and not much validation or parallel work the national budget of 2015. It is conducting research have been done. The WHO project identified additional on ways to improve the efficiency of screening and on research areas (renal biopsy study, study on early different biomarkers. There are more than 30 hypotheses markers, animal slaughter house study, cyanobacteria and no definitive agreement on the causal factor/s as yet. study and ochratoxin, p-aminohippuric acid [PAH], and Table 2 provides a list of important research publications aristolochic acid analysis in urine and water), including that have led to these hypotheses along with the primary the planned phase II study (randomised clinical trial to research institute. examine the renal effects with enalapril in adults with CKDu) (Jayathilake et al., 2013), which has now been Gunatilake et al. (2014) critically reviewed the completed and published (Selvarajah et al., 2016). There current scientific evidence of Chronic Kidney Disease of is a need to have quantifiable goals and mobilise funds unknown aetiology (CKDu) but giving more emphasis to ensure execution. The currently available National to the chronic exposure to heavy metals associated with Kidney Fund should be used strategically and quickly by agricultural activities. Therefore, an unbiased meta- putting the plan into action. analysis of the present scientific information is indicated. Water supply is a basic human right. It is ironic that the very province, i.e. NCP, that introduced hydraulic Media response technologies in the ancient period is facing an issue of The nature of the disease and its high impact caused potable water today, as CKDu is linked by many to water interest in and coverage by the media, which has given quality. prominence to most of the hypotheses from the research There is a need to have an open data policy. There programmes without any analysis. Some hypotheses, has been criticism for not sharing data and information which have caused controversy, have received more openly, although a large population group faces this media coverage. These may have caused more confusion problem. Jayasinghe (2014) comments on the CKD- than clarity (Gunawardene, 2012), as some sections of CKDu confusion and the biased sampling, lack of the affected community are not literate. uniform laboratory study procedures and statistical The media could have been responsive in a positive approaches. This statement is not repudiated as most manner. As water was highlighted to be a prominent research stands alone without replication and validation. causal factor, there was the issue of people not drinking A climate of data exchange and collaborative research sufficient quantities due to fear of getting the disease. between the medical and non-medical sectors appears to With another hypothesis of dehydration leading to CKDu, be wanting. there was the need to handle communications more There have been several attempts to develop national professionally. There is also a belief that the likelihood action plans. A coherent strategy and focused action plan of death is higher with dialysis. The local media’s lack of scientific competence is a factor. are important. The recommendations of all these action Sri Lanka Journal of Social Sciences 42 (2) December 2019 96 A. A. P. de Alwis and P. V. S. Panawala Available from: http://www.island.lk/index.php?page_ plans are important and are perhaps valid for good health, cat=article-details&page=article-details&code_title=137016 in their own right, irrespective of CKDu. th [Accessed: 11 April 2016]. A nation-wide surveillance system should be set up. Dissananayake, D. M., Jayasekera, J. M. K. B., Wimalasiri, Currently, the Ministry of Health has 34 sentinel sites R., Ratnayake, I. and Dissanayake, S. (2012) Renal tubular around the country, which report to the Epidemiology functions of farmers of high prevalence area for CKDu, In: Sri Unit. Emerging technologies should be introduced to Lanka Medical Association, Research Symposium on Chronic realize this goal. GIS application and data analytics Kidney Disease of Unknown Aetiology (CKDu), Colombo, Sri need to be markedly strengthened. CKDu provides an Lanka 11 March 2012, Colombo: Sri Lanka Medical Association opportunity to understand and execute better response [Online] Available from: https://issuu.com/slmanews/docs/ th mechanisms, and the national response needs to be aware ckdu_abstract_book [Accessed: 8 December 2012]. of the potential of positive and innovative responses. DOI: https://doi.org/10.4038/sljas.v24i1.7562 Considering the time that has passed since the Dissananyake, D. M., Jayasekera, J. M. K. B., Ratnayake, P., disease was first diagnosed in mid-1990s, the enormity Wickramasinghe, W. and Radella, Y. A. (2011) The Short- of the burden and the continuously accumulating death term Effect of Cyanobacterial Toxin Extracts on Mice Kidney, Proceedings of the Peradeniya University Research Sessions, toll, there is a definite need for the Sri Lankan national response to be informed by proper assessment of latest research on the subject. Dissanayake, D. M., Jayasekera, J. K. M. B. Adhikari, S. 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(2008) Chronic Evidence of tubular damage in the very early stage of chronic renal failure among farm families in cascade irrigation systems in Sri Lanka associated with elevated dietary cadmium levels in kidney disease of uncertain etiology in the North Central rice and freshwater fish (Tilapia), Environmental Geochemistry Province of Sri Lanka: a cross-sectional study, Environmental and Health, 30(5), pp: 465-478. Health and Preventive Medicine, 17(2), pp: 109-117. DOI: https://doi.org/10.1007/s10653-007-9129-6 DOI: https://doi.org/10.1007/s12199-011-0224-z Sheriff, R. and Janakan, N. (2013) Literature repository on OPA News (2016) OPA Launches two Books on “Chronic chronic kidney disease of unknown aetiology– CKDu 1998– Kidney Disease Of Unknown Etiology (CKDu)” & “Role of Agriculture in Food Sovereignty and Poverty Eradication”, OPA News [Online] 14(01) February, p. 3, Available from: Siriwardhana, E. A., Perera, P. A., Sivakanesan, R., Abeysekara, http://opasrilanka.org/wp-content/uploads/2017/09/2016- th T., Nugegoda, D. B. and Weerakoon, K. G. (2014) Is the staple February-newsletter.pdf [Accessed: 12 December 2017]. December 2019 Sri Lanka Journal of Social Sciences 42 (2) A review of the national response to CKDu in Sri Lanka 99 diet eaten in Medawachchiya, Sri Lanka, a predisposing factor Wanigasuriya, K. P., Peiris-John, R. J. and Wickremasinghe, R. (2011) Chronic kidney disease of unknown aetiology in in the development of chronic kidney disease of unknown Sri Lanka: is cadmium a likely cause?, BMC Nephrology, aetiology? A comparison based on urinary beta2-microglobulin 12(1), pp: 32-38. measurements, BMC Nephrology, 15(1), 103. DOI: https://doi.org/10.1186/1471-2369-12-32 DOI: https://doi.org/10.1186/1471-2369-15-103 Wanigasuriya, K. P., Peiris-John, R. J., Wickremasinghe, R. Sri Lanka, COSTI, Virtual Information Knowledge System and Hittarage, A. 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(2012) Aetiological factors of Chronic Kidney th Available from: http://lankarainwater.org/wp/ [Accessed: 30 Disease in the North Central Province of Sri Lanka: A review March 2016]. of evidence to-date, Journal of the College of Community Physicians of Sri Lanka, 17(1), pp: 21-42. Sri Lanka, Ministry of Health (2014) Screening guidelines– DOI: https://doi.org/10.4038/jccpsl.v17i1.4931 chronic kidney disease Sri Lanka, Colombo: Epidemiology Unit, Ministry of Health. Wasana, H. M. S., Perera, G. D. R. K., Gunawardena, P. de S., Fernando, P. S. and Bandara, J. (2017) WHO water quality Sri Lanka, National Academy of Sciences (2015) NASSL standards vs Synergic effect(s) of fluoride, heavy metals and Statement on the Banning of Glyphosate [Online] Available hardness in drinking water on kidney tissues, Scientific Reports, from: https://nassl.org/nassl-statement-on-the-banning-of- 7, 42516. th glyphosate/ [Accessed: 30 March 2017]. DOI: https://doi.org/10.1038/srep42516 Sri Lanka, National Academy of Sciences (2013) Proceedings Wijetunge, S., Ratnatunga, N. V., Abeysekera, D. T., Wazil, A. W., Selvarajah, M. and Ratnatunga, C. N. (2013) Retrospective of the Symposium on Chronic Kidney Disease of uncertain analysis of renal histology in asymptomatic patients with aaetiology (CKDu) – a scientific basis for future action ,10 probable chronic kidney disease of unknown aetiology in December 2013, Colombo: National Academy of Sciences. Sri Lanka, Ceylon Medical Journal, 58(4), pp:142-147. Sri Lanka, Organization of Professional Association of DOI; https://doi.org/10.4038/cmj.v58i4.6304 Sri Lanka (2015) OPA think tank recommendations to arrest the occurrence and spread of chronic kidney disease of unknown World Health Organization (2016) Workshop report on aetiology (CKDu). ‘Designing a step-wise approach to estimate the burden and to understand the aetiology of CKDu in Sri Lanka’. Sri Lanka, Presidential Task Force (2016) Chronic Kidney Disease Prevention [Online] Available from: http://www. World Health Organization (2013) Investigation and th presidentialtaskforce.gov.lk/en/kidney.html# [Accessed: 30 evaluation of chronic kidney disease of uncertain aetiology, March 2016]. Final report of Grant No. 57445 [Online] Available from: http:// www.indiaenvironmentportal.org.in/files/file/Chronic%20 Kidney%20Disease%20of%20Sri%20Lanka.pdf [Accessed: Sri Lanka, Renal Registry Sri Lanka (2016) [Online] Available th th 30 March 2016]. from: http://renal.nicslk.com/ [Accessed: 30 March 2016]. Sri Lanka Journal of Social Sciences 42 (2) December 2019 100 A. A. P. de Alwis and P. V. S. Panawala Annex 1: The GoSL/WHO study recommendations (Recommendations to address CKDu based on the WHO final study report) 1. Since the determinants of CKDu lie outside the health sector, it is recommended to set up a high-level interministerial committee, to actively engage Ministries of Agriculture, Water Supply, Irrigation and Social Services to implement multisectoral policy action required to address the problem of CKDu. 2. Despite the water being safe for use, water purification schemes need to be scaled up to provide adequate water to households in the endemic area for drinking and cooking purposes as it is a human rights issue. 3. Strengthen the regulatory framework to improve quality control of imported agrochemicals, particularly with regard to those containing nephrotoxic agents such as Cd and As, amendments to existing legislation, capacity strengthening for implementation and monitoring. 4. Implement and monitor comprehensive public health measures to reduce the exposure of farmers to harmful health effects of agrochemicals through, i) education on the appropriate use of fertilizer ii) compulsory provision of safety clothing, gloves and masks at the point of sale of agrochemicals iii) control of the sale of agrochemicals which are known to be nephrotoxic e.g. Propanil, Chlopyrifos and others iv) education on cooking practices i.e., avoid the use of water from irrigation canals for cooking and drinking, discard water after boiling rice, reduce intake of lotus particularly in families with a history of kidney disease v) education on the importance of adequate water intake and non-smoking. 5. Improve service provision for early detection of CKDu, hypertension and diabetes and appropriate treatment (avoiding nephrotoxic medications) including through close to client services. 6. Increase the financial assistance provided to farmer families affected by CKDu to prevent them from getting more impoverished and malnourished. Inability to purchase food will cause iron, folate, antioxidant and trace metal deficiency which increase susceptibility to harmful effects of heavy metals on the kidney . 7. Increase awareness among Ayurvedic practitioners of the nephrotoxic effects of Aristolochia (sapsanda) and recommend not using it. 8. In the long term, regulate as necessary and facilitate research to; promote the use of alternative fertilizers, reduce heavy metals in soil or make them less available, develop rice strains which require less fertilizer / resistant to pests, reduce pollution of the environment including air pollution. Source: World Health Organization (2013; pp: 315-316). December 2019 Sri Lanka Journal of Social Sciences 42 (2)

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Published: Dec 26, 2019

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