Don’t ignore 2016 WHO consultation on CKDu



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By Amarasiri de Silva, PhD


(Visiting Professor, University of Pittsburgh, USA)


An international expert consultation on Chronic Kidney Disease of Unknown Aetiology (CKDu)was held in Colombo in April 2016, organized by the Presidential Task Force for Prevention of Chronic Kidney Disease and the Sri Lanka country office of the World Health Organization (WHO). The report of the consultation is now available to the public on the WHO web portal (http://www.searo.who.int/srilanka/documents/report_international_expert_consultation_on_ckdu.pdf?ua=1). The report runs to 47 pages, and is organized into sections based on the three one-day sessions. The objectives of the consultation were to: a) develop a consensus on research priorities and cost-effective interventions based on the available evidence for the prevention and management of CKDu; b) review the knowledge on CKDu globally and in Sri Lanka, and identify gaps in that knowledge; c) prioritize an interdisciplinary collaborative research agenda; and d) develop a consensus on the monitoring and accountability framework for the implementation of the recommendations.


The list of participants shows that there were 59 consultants comprising epidemiologists, nephrologists, engineers, university professors and scientists. In addition to the Sri Lankan participants, the group comprised consultants from India, the United Kingdom, Australia, Cuba, El Salvador, Finland, Sweden, Canada and Costa Rica. There was no representation from the affected communities in Sri Lanka,nor any Sri Lankan activists working on the disease.


The outcome of the consultation was a set of recommendations, which, it was proposed should be incorporated into the National Action Plan on CKDu for Sri Lanka. The recommendations include 1. the development of a surveillance system to understand the burden, geographical distribution and time trends of CKDu in Sri Lanka;2. the establishment of a consortium of national/international researchers to conduct long-term interdisciplinary research;3. the strengthening of existing interventions and their implementation; 4. the provision of social support for patients in affected families and communities;5. the provision of human resources such as nephrologists, renal care nurses, social workers at the nephrology units and within communities, in order to enhance the coverage of renal care services and the provision of psychosocial support to patients and their families; and 6. the development of a framework for monitoring and accountability.


The consultation has concluded that cadmium in water is unlikely to account for the disease, and that arsenic alone is unlikely to be the causative agent of CKDu. The association between pesticides and other agrochemicals and CKDu, as reported in some research, is seen as inconclusive. The increased risk of developing CKDu among those who drink well water, as opposed to spring water,suggested by some researchers, is seen as speculative and based on anecdotal evidence: as the report says, even if this hypothesis is accepted, the preponderance of males among those suffering from the disease cannot be explained if drinking well water is the major cause. The group observed that any statistical results suggesting genetic factors maybe attributable to the effects of shared environment, which may include the use of shared wells. Heat stress and leptospirosis (an infectious disease caused by a particular type of bacteria called a spirochete transmitted by rats and other rodents) were seen as potential risk factors. The group is of the view that the agrochemicals that are known to cause the disease can begradually phased out to reduce the exposure in endemic areas [This statement is somewhat contrary to the observation made earlier in the report that the association between pesticides and other agrochemicals and CKDu is inconclusive]. The early detection and treatment of CKDu are highlighted as necessary steps to follow andthe lack of community-based surveillance and of coordination between the screening programmes and patient registry were identified as important gaps. The absence of a single clear definition of the disease delays in data entry and inadequate analysis to inform policy makers were seen as major gaps and obstacles in the current data maintenance and surveillance arrangements.


The group that focused on social interventions noted that there are huge gaps in knowledge among patients and in service provision. The group further says, ‘the needs of the patients and families should be elucidated through a consultative process, and patients’ views taken into consideration when planning interventions’ (p26), but, as revealed in the list of participants, there was no community representation in the consultation meeting, on the second day when social interventions were discussed. The group has recommended excellent social interventions that include psychological counselling for patients and their families, assistance to children of affected families through school-based and foster-family programmes, establishing bank accounts for such children to continue their education uninterrupted, and setting up self-help groups in communities to assist and care for affected families. However, the strategies suggested by the group – such as setting up a national level intersectoral group to implement the community intervention program with a ‘dedicated’ budget and an intersectoral team - are overly ambitious. The strategies should focus on each affected community, the Tulana or the Grama Niladhari Division,and be implemented by community organizations and monitored by the District Secretariat to be effective.


The overall framework for monitoring, implementation and accountability were discussed on day 3, and a three-pronged structure,comprising a national committee on CKDu, an independent expert review group and an intersectoral coordinating mechanism, was proposed. The intersectoral coordinating committee will comprise people from the relevant ministries, civil society, academia, the private sector and affected communities. The overall framework is somewhat sketchy with no details on how the various links and loops are to be established or how an uninterrupted information flow from the lowest level of patients and theirfamilies, through affected villages, Grama Niladhari Divisions, District Secretariats, and Government Agents to the National Committee on CKDu is to be guaranteed. This is a huge structure and a formidable task when it comes to implementation and monitoring, even before considering issues of accountability. Given the range of responsibilities already placed on local administrators at various levels, this new function will add significantly to their workload. It would be sensible to decentralize the tasks and carry them out through civil society organizations such as the suvasahana kamitu (health committees) established in affected villages.


It is also important to prioritize the various tasks in order to achieve the objectives of the consultation. The last section of the report on ‘moving forward’ sets out various tasks under sub-headings. It does prioritize the activities with details on targets, budgets, time schedules etc. However, no information is provided on who contributes to what or how the various responsibilities and tasks are to be shared among the participating agencies. Without such a detailed plan, this consultation could become yet another event that has merely produced a report that will lie on the shelves of the ministries and be displayed on websites.


The first recommendation highlights the most important lacuna pertaining to CKDu identified by the consultation, namely the lack of proper monitoring of the disease. The consultation recommends a robust surveillance system to understand the disease burden, its geographical distribution and time trends. As I have stated previously (Island Newspaper, December 14, 2015), the clinical data pertaining to the CKDu patients who visit nephrology clinics and hospitals in the affected districts are a potentially powerful resource, which, with proper analysis, can be effectively used for public health programmes, disease management, and the identification of trends and geographical spread. If the data were entered on to a computer every day after each patient visit, this would generate a massive and comprehensive data set. This task should be given the highest priority. It is as simple as setting up a computer with a data entry programme installed on it in each clinic and hospital. The data entered would be transferred to a central location, where a further computer programmewould be used to generate information on trends, patterns, geographical distribution etc. for analysis by officials and scientists. If the data entry programme were backdated to cover the period from 2000, when the disease was first identified, then the total picture of how the disease has progressed, and how it is distributed geographically, by age and gender, occupation etc. would become readily apparent. If this task could be accomplished, that in itself would be a major achievement of the 2016 WHO consultation, and is a stepping-stone towards more practical action.


 
 
 
 
 
 
 
 
 
 
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