Improving Public Access to Preventive and Curative Strategies to Combat Chronic Kidney Disease (LK0001)

A mysterious chronic kidney disease (CKD) has been killing thousands of Sri Lankans. In 20 years the disease has left more than 20,000 people dead and affected more than 400,000; some villages report it causes as many as 10 deaths a month. For those already affected by this disease, care is often inadequate. The country has just 183 dialysis machines, forcing most villagers to receive less than the three recommended weekly treatments. In the absence of reliable information, fear and rumors are driving thousands to seek desperate measures, including many which are unscientific and spurious. CKD should be viewed like any public health issue where health promotion, prevention, early detection, treatment and rehabilitation principles would apply. The selection of the appropriate strategy depends on the scientific basis, current epidemiology, and plausibility of behavior change where it applies, economic feasibility and political interest. Whilst the Ministry of health being the agency to take lead on Public health can identify the prevention strategic plan, its implementation would depend on greater understanding of the public and the efforts of other relevant non health sectors. A prevention strategic plan has not been developed although some measures have been taken based on strengths of individual advocacy. These interventions have been carried out as inter-sectoral approaches related to pesticide, fertilizer regulation and provision of safe water. Engaging the public would help decision makers to consolidate and implement more effective prevention strategies to reduce occurrence of CKD. The other pressing concern of the ministry of health has been to expand services for dialysis for those affected with CKD. There is no reliable information available to those affected and citizens at large on availability of dialysis machines and medicines in public hospitals. Issues to be Addressed: At the present the public is not aware of prevention, mitigation and coping strategies on CKD, including accessing information on critical medical interventions. Main Objective: Increase the level of understanding of public regarding prevention, mitigation and coping with CKD and engage civil society in developing the prevention plan

1. Public Access to Strategies to Combat Chronic Kidney Disease

Commitment Text:

Improving Public Access to Preventive and Curative Strategies to Combat Chronic Kidney Disease (CKD)

[…]

Main Objective:

Increase public understanding on prevention, mitigation and coping with CKD, and engage civil society in developing the prevention strategic plan.

Milestones:

• 1 Establish a multi-stakeholder forum to draft prevention strategic plan and recommend changes to health policy.
• 2 Publish key information related to government’s measures to combat CKD, including list of medical facilities and services being offered, budget allocated for CKD and key policies in ministry website and through media.
• 3 Conduct island wide public consultations and campaigns to disseminate key information (1.2 above).
• 4 Institutionalize feedback mechanisms in medical facilities offering treatment for CKD to elicit responses on access to, quality of and reliability of facilities and services.
• 5 Publish semi-annual reports of citizen/user feedback on access, quality and reliability of facilities and services offered on CKD.

Responsible institution: Ministry of Health, Nutrition and Indigenous Medicine

Supporting institutions: Chronic Kidney Disease Unit; Health Education Bureau; Presidential Task Force on CKDu

Start date: July 2016............   End date: July 2018

Editorial Note: The text of the commitment was abridged for formatting reasons. For full text of the commitment, see the Sri Lanka National Action Plan 2016–2018 at http://bit.ly/2wv3jXR.

Commitment Aim:

This commitment aimed to increase public awareness of, and access to, formal preventive and curative strategies, and facilities, relating to chronic kidney disease (CKD). [1] The Ministry of Health and related stakeholders envisioned that the commitment would encourage the public to a) avoid spurious or unscientific methods of dealing with CKD, b) adopt timely and appropriate preventive measures, and c) present themselves for regular clinical screening. In turn, stakeholders hoped that this would reduce related morbidity or mortality.

Status

Midterm: Limited

This commitment achieved limited completion by the midterm. Many stakeholders took steps toward publishing information on combating chronic kidney disease (CKD) (Milestone 1.2). The Presidential Task Force on CKD, for instance, published limited information on the prevention of CKD on its website. [2]

Concurrently, the Ministry of Health took measures to improve transmission of public health messages, including information on CKD (Milestone 1.3). These measures, encouraged by the OGP commitment to disseminate key information on CKD, included references to CKD in epidemiological reports, [3] media seminars, and training on communication for behavioural modification for medical officers. [4]

The Ministry of Health had not, however, established a multistakeholder forum (Milestone 1.1) to draft the strategic plan for CKD prevention, published a budget and inventory pertaining to CKD services and facilities, or institutionalised public feedback mechanisms (Milestone 1.4) at medical facilities offering CKD treatment.

End of term: Limited

Commitment implementation continued to be limited at the end of term.

Milestone 1.1: According to the Ministry of Health, a multistakeholder forum was established comprising representatives from government, civil society, and research institutes. ^[5] As confirmed by civil society, this forum met twice with discussions primarily focusing on better understanding the issue of CKD. [6] Although no consensus was reached on the direct cause of CKD or a single, preventative course of action, both civil society and government noted that stakeholders participating in the forum agreed on the need for more research on diet-induced causes. ^[7] Civil society noticed, however, that the discussions did not lead to the development of a strategic prevention plan. [8]

Milestone 1.2: The Ministry of Health published no further information on CKD by the end of term. The ministry did, however, pursue a few related initiatives, including participation in television interviews and hosting an event to disseminate information on CKD in June 2018. ^[9] At the time of this report, the National Health Accounts of 2013 was the only budget report found on the ministry website. [10]

Milestone 1.3: Sarvodaya, the Ministry of Health’s civil society counterpart advocating for more information on CKD, noted that the ministry conducted some media and social media campaigns, but did not regularly publish key information on CKD. [11] This information includes government measures to combat CKD, such as lists of medical facilities and services being offered, budget allocated for CKD, and key policies. The ministry also conceded that it had not conducted any public consultations. ^[12]

Milestones 1.4–1.5: According to the ministry, feedback mechanisms were operational through the hospital network and hospital development committees (HDCs). However, Sarvodaya noted that these mechanisms were not explicitly linked to CKD. [13] The ministry added that although service users had the opportunity to provide feedback, they may not have been sufficiently empowered to do so. ^[14] The ministry did not, therefore, publish reports of user-feedback on access, quality, and reliability of CKD services and facilities.

Did It Open Government?

Access to Information: Marginal

Civic Participation: Marginal

This commitment had limited effect on access to information and civic participation, and thus only led to a marginal improvement in open government.

At the outset of the action plan, CKD was a serious public health issue in Sri Lanka. Since 2010, an increasing number of cases had no identifiable cause. Thus, the public was left with little access to conclusive information on preventive or curative measures, or on the availability of critical medical interventions. ^[15] In turn, the lack of coherent, accessible information fuelled confusion and led many to seek extreme measures. [16] There was also a disproportionate number of facilities to provide adequate or effective treatment, and efforts were severely hampered by a lack of coordination among the different stakeholders. [17]

Key government and civil society stakeholders noted that the implementation of this commitment was limited. ^[18] The ministry and related stakeholders, such as the Presidential Task Force on CKD, published and disseminated some government-held information pertaining to CKD through websites, leaflets, and wallcharts (see Milestone 1.2). However, this disclosure contained few, if any, conclusive details and did not inform sustainable solutions. ^[19] Therefore, these initiatives did not contribute to a significant improvement in access to information. Similarly, although established, the multistakeholder forum did not work toward, or result in, the preparation of the strategic prevention plan anticipated by stakeholders. [20] This meant that multistakeholder forum was unable to recommend changes to health policy. However, the Ministry of Health recognized that previously conflicting parties were now coming together to discuss the issue, and this represented a notable, albeit marginal, improvement in itself. ^[21]

Carried Forward?

Sri Lanka’s second action plan was not released by the time of this report. However, given the importance of citizens being made aware of preventive strategies and facilities on CKD, the IRM researcher recommends this commitment be carried forward to the next action plan.

In the 2016–2017 IRM midterm progress report, the IRM researcher recommended a few additional measures that could be taken to further enhance the impact of this commitment. These include publishing bi-annual reports on CKD research initiatives; appointing a focal point to coordinate initiatives to improve public access to preventive strategies; using diverse communication portals to share authentic information on CKD; and following-up on reports of user-feedback on access to, and the quality and reliability of, CKD facilities and services.

[1] The medical community has often presented CKD as a complication of diabetes or hypertension. However, since 2010, an increasing number of reported cases have had no identifiable cause (i.e., chronic kidney disease of unknown aetiology, CKDu). This is also sometimes referred to as Chronic Kidney Disease of non-Traditional causes (CKDnT).

[2] “Presidential Task Force on Chronic Kidney Disease Prevention” (Presidential Task Force, 2017) http://www.kidney.presidentialtaskforce.gov.lk/?lang=en.

[3] Ministry of Health, Nutrition, and Indigenous Medicine, Weekly Epidemiological Report, 11-17 February 2017, https://bit.ly/2GoboBc

[4] Dr. Susie Perera (Ministry of Health, Nutrition, and Indigenous Medicine), Dr. Amila Chandrasiri (Ministry of Health, Nutrition, and Indigenous Medicine), and Dr. Vinya Ariyaratne (Sarvodaya), interview by IRM researcher, 26 October 2017.

[5] Dr. Susie Perera (Ministry of Health, Nutrition, and Indigenous Medicine), interview by IRM researcher, 28 September 2018; Dr. Amila Chandrasiri (Ministry of Health, Nutrition, and Indigenous Medicine), interview by IRM researcher, 14 September 2018.

[6] Dr. Vinya Ariyaratne (Sarvodaya), interview by IRM researcher, 27 September 2018.

[7] Perera, interview, 28 September 2018; Chandrasiri, interview, 14 September 2018; Ariyaratne, interview 27 September 2018.

[8] Ariyaratne, interview, 27 September 2018.

[9] Perera, interview, 28 September 2018; Chandrasiri, interview, 14 September 2018.

[10] Ministry of Health, Nutrition & Indigenous Medicine, Sri Lanka National Health Accounts 2013 (2018) https://bit.ly/2QA9r8e.

[11] Ariyaratne, interview, 27 September 2018.

[12] Perera, interview, 28 September 2018; and Chandrasiri, interview, 14 September 2018.

[13] Ariyaratne, interview, 27 September 2018.

[14] Perera, interview, 28 September 2018; Chandrasiri, interview, 14 September 2018.

[15] “Medical Mystery: Kidney Disease Killing Farm Workers in Sri Lanka” (CBS News, 19 January 2015) https://www.cbsnews.com/news/medical-mystery-rare-kidney-disease-killing-sri-lanka-farmers/.

[16] For instance, upon the onset of a symptom of any basic illness, people in affected areas fear the contraction of CKD and rely on unsubstantiated information to drink as little water from their wells as possible. This action then leads to chronic dehydration and further deterioration of their health condition — “Medical Mystery: Kidney Disease Killing Farm Workers in Sri Lanka,” CBS News, 19 January 2015, https://www.cbsnews.com/news/medical-mystery-rare-kidney-disease-killing-sri-lanka-farmers/.

[17] Ariyaratne, interview, 26 October 2017.

[18] Perera, interview, 28 September 2018; Chandrasiri, interview, 14 September 2018; Ariyaratne, interview, 27 September 2018.

[19] Dr. Susie Perera and Dr. Amila Chandrasiri, interview by IRM researcher.

[20] Ariyaratne, interview, 27 September 2018.

[21] Perera, interview, 28 September 2018.