“Would you tell me please, which way I ought to go from here?” said Alice.
“That depends a good deal on where You want to get to”, said the cat.”
- Alice in Wonderland, Lewis Caroll
Chronic Kidney Disease of uncertain Origin (CKDu) is currently the most serious non communicable disease afflicting farming communities in Sri Lanka’s dry zone. It was first diagnosed in the mid 1990s in the North Central Province (NCP), and has now been positively diagnosed in six out of the nine provinces in the country. Over 25,000 people are estimated to have died from this kidney disease already. Approximately 1000 patients die from the disease each year and about 2000 new patients seek treatment for end stage renal disease each year at government hospitals. Many times that number may be developing clinical symptoms of the disease and progressing towards end stage renal failure.
The Ministry of Health currently spends over 400 million rupees annually in the management of renal disease (on dialysis, transplants etc). Costing the loss to the Nation’s labour force defies quantification.
The CKDu problem has been much talked about, dissected and debated on many occasions at several fora, but no cohesive plan of action to deal with it has still been formulated.
This should have been the responsibility of the Presidential task force specifically established to deal with the problem, but for reasons better known to itself, it has still failed to live up to expectations.
The magnitude and gravity of the CKDu problem is such that it clearly needs the concerted action of several ‘actors’ – government departments, universities, nongovernmental organisatons (NGOs), donors, corporate sector and civil society groups. This article attempts to spell out a few key areas which need to be addressed by various agencies.
The Ministry of health has played a valuable role in the treatment of CKDu patients (through dialysis, transplant programmes and medication) as well as screening communities in endemic areas. While appreciating these efforts, it needs to be recognized that screening programmes designed to detect CKDu in its early stages, have a long way to go. According to reliable estimates, less than five per cent of the population in the North Central region has still been screened. What about the rest of the country?
Department of Agriculture (DA)
CKDu appears to be essentially confined to areas where rice cultivation is the primary occupation of the people. As such, farming practices of rice farmers have been long suspected to be connected to the disease. Misuse of pesticides by farmers has been frequently pointed out as a matter needing urgent attention. However, the Department of Agriculture has still failed to revitalize its farmer education programme (extension service).
Banning the import of various pesticides appears to have been the DA’s major activity to date. Here too, the authority of its key decision making body (The Pesticides Technical Advisory Committee) has been usurped by politicians resulting in some hasty, misguided actions having far reaching negative impact on the island’s tea estates.
Detecting pesticide residues in vegetables and fruit has been long neglected. Does the DA have any clear programme or strategy to address this issue?
Water Board
All available evidence clearly indicates a strong association between CKDu and drinking water obtained from shallow dug wells. Analysis of water quality in many of these wells shows a high concentration of Fluoride, and dissolved Calcium and Magnesium salts. Yet, not all wells appear to be ‘bad’. There is considerable spatial variation in water quality of dug wells. This would indicate a need to analyze water in all wells in CKDu endemic areas and map the locations using the latest GPS technologies. Is the Water Board equal to this task?
A recent COSTI (Coordinating Secretariat for Science, Technology and Innovation) report has highlighted the fact that many water purification facilities (R.O. Plants) in Anuradhapura area have been established in locations where there was no need for such purification in the first place! Besides engaging in this wasteful activity, the responsible agencies (mostly NGOs), have been charging rupees one to one fifty for each liter of “purified water” distributed to poor villagers. Had the Water Board been consulted before embarking on such expensive misadventures, much waste and unnecessary costs could have been avoided.
Universities
Universities have been in the forefront of CKDu research contributing much to our current understanding of the subject. However, the aetiology of the disease is still uncertain, and further research needs to be carried out in an effort to pin point the specific cause.
However, there appears to be a need to assess the current status of research programmes, and identify key areas needing further investigation. Would the National Academy of Sciences address this issue?
Shift in focus urgently required
With almost 2000 new CKDu patients joining the ranks of those already receiving treatment each year, there is an urgent need to pay more attention to CKDu preventive measures based on available evidence/knowledge. Providing access to clean drinking water, making health education more effective at village level, and farmer education in the rational use and safe handling of pesticides are some such interventions that need to be implemented immediately.
Non Governmental Organisations (NGOs)
Experience all over the world has shown that NGOs can be more effective than government departments in reaching out to people at the periphery. Sadly, government agencies in our country do not seem to realize this fact, and even the NGOs do not seem to be aware of what they could do in effectively dealing with the CKDu problem.
NGO involvement is essential in dealing with issues pertaining to people in CKDu endemic areas. They can play a vital role in CKDu prevention programmes (providing clean drinking water, improving health education at village level, environmental protection, preventing pollution of water resources and farmer education in safe handling of pesticides). All these activities require close interaction with under-privileged people (a subject that NGOs are good at). NGOs could also assist in counseling and providing psycho-social support to CKDu patients and their families. Many local NGOs tend to be funded and ‘donor driven’. Perhaps it is lack of donor support for CKDu related issues which prevent NGOs from playing a more assertive role in reaching out to villagers crying out for help.
Donors
Donors- particularly the large international agencies- tend to be looked upon as ‘Cash cows’ to be ‘milked’ as and when the need arises. But if donors are to be really effective, they must ensure that their assistance is properly focused and reaches the people in need. Their assistance is best linked to the NGO sector- particularly those with a proven track record. This should also go beyond provision of mere financial resources, but also address issues pertaining to capacity building of NGO personnel.
Donor assistance is frequently sought in purchasing ‘hardware’ (like water filtration plants). In all such instances, donors must consider the interests of the ultimate beneficiaries – the rural people. They must not forget the social context of dry zone villagers in prescribing solutions.
They need to be aware of the specific rural context- the conditions under which the people live, and ensure that the equipment provided can be maintained and sustained by the beneficiaries themselves. The history of rural development is replete with instances of misguided high cost ‘imported solutions’ which are beyond rural peoples’ capacity to maintain and sustain. Most appropriate solutions tend to be those that are technically effective, easy for rural people to understand and implement, and maintain themselves with minimum dependence on ‘outsiders’.
Sustaining development initiatives requires beneficiary participation in the decision making process. NGOs have the most experience in dealing with such activities, and donors may do well to ensure that NGOs funded by them have proven skills and experience in participatory development.
Corporate sector
Recent years have seen a marked increase in the growth and prosperity of the corporate sector in Sri Lanka. Some of them take a keen interest in sharing part of their prosperity through ‘Corporate Social Responsibility (CSR)’ projects. Many such laudable initiatives may be directed towards CKDu prevention programmes.
Civil society
Civil society represents a hitherto untapped resource rich in varied skills and resources, besides possessing much good will. We Sri Lankans appear to be weak in harnessing this potential. Let’s make an effort to involve them through better information and more effective community education programmes. The print and electronic media need to play a bigger role in galvanizing civil society to address this (CKDu), and other issues of national importance. Center for Education, Research and Training in Kidney Diseases (CERTKid)
This is a multi-disciplinary team of researchers (Nephrologists, Physicians, Pathologists, Geologists, Chemists, Agronomists and Rural Development Specialists) committed to comprehensive investigation of the CKDu problem. The organization is based at the Medical Faculty, University of Peradeniya. Its guidance and advisory services are available free of charge to any organization interested in addressing the problem of CKDu.
(The writer is a farmer, researcher and rural development activist interacting with dry zone farming communities for over 30 years. He is currently associated with the Center for Education, Research and Training in Kidney Diseases (CERTKid), University of Peradeniya. He may be contacted at: [email protected])
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