By 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.
First, there has been an increase in attendance at clinics for CKDu checkups, which is commendable. Attendance at the Renal Clinic at Anuradhapura Teaching Hospital rose from 10,921 persons in 2004 to 15,889 persons in 2009, a 46% increase over 5 years. However, given that the disease affects between 15 and 20% of the population in the region (according to the WHO) [assuming that the rates prevailed in the five year period], these numbers represent only the tip of the iceberg. The number of confirmed CKDu patients at the Anuradhapura Clinic rose from 1,327 in 2004 to 4,975 in 2009, a huge 275% increase. This indicates an increase in the total number of CKDu patients in the villages over the five-year period, but also a growing awareness among the people of CKDu of its symptoms, and the need to visit hospitals for checkups and treatment. The latter are positive developments and indicators of the effectiveness of the media and the implementation of the educational programs conducted by the local health department through village health committees.
The mortality rate among CKDu patients in Anuradhapura hospital fell from 10.6 % in 2004 to 4.5% in 2009. One could argue that the decrease in mortality rates reflects improvements in treatment and in the quality of care in the hospital-based CKDu healthcare system in the affected districts. However, this data should be treated with caution, since they do not reflect the overall rates of CKDu deaths in the region: as pointed out earlier in this article, many end-stage CKDu patients withdraw from the hospitals and die in their own communities. This is a tragedy. Hospitals should invest in treatment programmes to make them attractive and patient-friendly. Provision of adequate number of dialysis machines, hospital beds, and facilities for a family member to stay with the patient, provision of meals and medicine freely as the patients cannot afford to pay are some quick measures to attract the patients to hospital treatment. Unless CKDu patients are confident that hospitals can look after them and treat them well, particularly in the later stages of the disease that require haemodialysis and close monitoring, they will not visit the hospitals, and will not adhere to hospital-based treatment regimens.
In its 2010 annual action plan, the health ministry claimed that CKDu was a serious concern, and identified many programmes for future implementation. It is the responsibility of the CKDu Task Force set up under the guidance of the President to monitor the progress of these programmes, if targets for CKDu management and care are to be achieved. There should be a monitoring unit attached to the Task Force to oversee the effective implementation of the recommended programmes. The ministry has suggested utilizing funds to establish nephrology units in the affected districts [may have been used to set up the 23 units referred to above], to recruit nephrologists for these units, to conduct screening programmes in all high risk areas, to amend to the WHO guidelines enabling tissue transplantation, and to set up a better follow-up system ensuring organ donor and recipient safety. It is important that the Task Force should evaluate the progress of these suggested programmes. In addition, health ministry requested support from the WHO, and this developed into a collaborative research effort between the health ministry, WHO and the National Science Foundation. The detailed findings of this project have been compiled and submitted to the government, which was expected to initiate action based on the recommendations. However, we do not yet know what actions have been taken by the government in response, so what is the Task Force doing about these recommendations?
We need to understand that CKDu is a disease that affects people’s way of life. It is a disease in the community as much as a disease that affects the individual. We all know that a doctor, if he or she is a concerned medical practitioner, will invest a few minutes to inquire about the patient, his or her background, occupation, etc. to enable a better diagnosis and assessment of the health condition of the patient. The social background of the patient is indisputably an important aspect of any treatment regimen. In most western countries, social aspects of health and disease are considered important parts of medical education curricula. When dealing with a community-wide disease, such as CKDu, it is imperative that a strong link between the community and the medical profession be forged in such a way that patients and their families gain confidence in hospitals, doctors, nursing staff and the treatment regimen.
Unfortunately, biomedical research on this complex syndrome has achieved little over the last 25 years, and one cannot say that there has been much progress in relation to either the causes of the disease or its management. The President in his speech on 20 August, 2015 at the inauguration of the Kidney Fund said that ‘all these responsibilities cannot be solved by any ministry or institution alone’, and emphasized ‘that the programs should achieve their objectives with the participation of everybody for the future of this country’. In that context, it is the responsibility of the President, the CKDu Task Force, and the doctors in nephrology clinics to be more open and accommodative and to be prepared to share patient data and harness the positive contribution and constructive criticisms of all those who have a dedicated interest in this national tragedy.
*Amarasiri de Silva, PhD (Formerly Senior Professor in Sociology at the University of Peradeniya)