CKDu In Sri Lanka – Has The Management Of The Disease Improved?

By Amarasiri de Silva –December 16, 2015

Dr. Amarasiri de Silva

The two principal areas of research into CKDu – that based on data collected from people in the community, and that based on patient data available in hospitals – are pursued entirely separately in our country. The field research is field research and the hospital-based research is hospital-based research, and it seems that, in Sri Lanka, never the twain shall meet. CKDu researchers often derive their own data from field investigations, but are either not allowed to or have not attempted to make use of hospital data as sampling frames to draw their field samples for research. On the other hand, the patient data in hospitals are analysed (mostly by doctors), without linking them with the community perspectives of the patients. Therefore, readers of such research often have to grapple with the problem of linking the two sides of the story – the treatment and disease management aspects with the socioeconomic or community issues. In other words, the link between the community and the hospital is almost absent in CKDu research. Often, CKDu patient data in hospitals in Sri Lanka are regarded as the ‘exclusive property’ of the doctors, and they are not shared with other scientists, especially with social scientists, who would like to use such data towards improving public health. This has given rise to a dire situation in CKDu research in Sri Lanka as the opportunities for mutual benefit and understanding between hospital-based research/data and community-based research/data are virtually absent. This unhealthy compartmentalization has prevented a comprehensive understanding, particularly when regarding CKDu as a problem in the community rather than only at the level of the individual patient.

Despite this duality, researchers have contributed in their own way to build up a narrative or a discourse on CKDu, which has helped to lead the public towards a medicalized understanding of the issues that surround CKDu. As a result, people in affected communities tend to look at CKDu as a disease caused by polluted water and environmental contaminants such as pesticides and herbicides. Hospital doctors, however, have not been able to convince the public that hospital attendance for CKDu is beneficial, particularly that early diagnosis and treatment can relieve most of the problems associated with the later stages of the disease. Moreover, many people who are in the final stages of the disease do not attend hospitals regularly: when the disease becomes severe and debilitating, they discharge themselves from hospital, and suffer and die in a few years in their own communities, because all that’s wrong in health care and hospital system [studies show such patients in their end-stages die within two years after they are diagnosed].

Since the disease was first identified in the 1990s, about 65 articles have been published in peer-reviewed journals – a commendable achievement in terms of investigating the phenomenon from different perspectives. An article or news item related to CKDu appears in the media almost every week, often based on scientific articles and mediated to cater to the needs of the general public. Public awareness of the disease is pretty high within the affected areas as well as in the country generally, largely due to the contribution of the media and the work of local health departments.

The health ministry has taken many steps to improve preventive measures pertaining to the disease, and to care for CKDu patients in the affected regions. Among these, allocating more funds and providing better facilities, such as nephrology clinics, trained doctors (nephrologists) and nursing staff, etc. seem important. As I was informed by Dr. Tilak Abeysekera (Consultant Nephrologist, Nephrology Dialysis and Transplant Unit, Teaching Hospital, Kandy), 23 nephrology clinics have been set up by the government in NCP. In the early 2000s, about 4% to 5% of the country’s health budget was spent on the treatment and management of CKDu patients [as Dr P.G. Mahipala, Director General of Health Services, presented at the symposium on CKDu in 2014, organised by the National Academy of Science. This is a significant proportion and more that the proportion spent on higher education!]. Since then, the need for facilities such as nephrology clinics, dialysis machines and a trained medical work force has been highlighted by the news media, activists, and doctors. The outcomes of these efforts are commendable as well as disappointing.                                     Read More