Parliamentary panel's recommendation for national kidney patient registry a long standing demand of medical experts

A Parliamentary panel has urged the Central government to do what medical experts have been demanding for years: systematically track data on the average number of dialysis sessions received by each active kidney patient per month, the proportion receiving the recommended frequency, drop-out rates, transplant rates, mortality and reasons for discontinuing treatment. Such data, the panel said is crucial for designing better interventions to address one of India’s fastest growing public health challenges.

The stocktaking became necessary after available data suggested that India could be having nearly 138 million persons living with Chronic Kidney Disease (CKD), constituting the second-largest CKD burden globally. It is also estimated that nearly 2.2 lakh new patients progress to End-Stage Kidney Disease (ESKD) every year, resulting in an additional requirement of approximately 3.4 crore dialysis sessions annually, apart from the continuing treatment needs of patients already undergoing dialysis.

“The Committee has just handed us something the kidney health community has been asking for”, Dr Vivekanand Jha, Executive Director of The George Institute for Global Health India, said.

Commenting on the 177th report on “prevalence of chronic kidney disease in India – prevention, diagnosis, treatment and management” of the Department Related Parliamentary Standing Committee on Health and Family Welfare that was presented before the Lok Sabha on August 7, Jha said for several years, the medical experts were asking the government to set up registries for the proper use of evidence to improve outcomes. “This recommendation has been included in the policy documents, but has not been operationalised”, he says.

The committee recommends kidney health to be pushed down the frontline – ASHAs and ANMs taking awareness door-to-door instead of waiting for people to walk into a facility. This approach is exactly right, Jha says.

Recognising the enormous public health, social and economic implications of this growing disease burden, the Committee had undertaken a comprehensive examination of the prevalence and epidemiology of CKD; preventive strategies and early screening mechanisms; diagnostic infrastructure; accessibility, affordability and quality of dialysis, transplantation and supportive care services; financial protection mechanisms; research and innovation; human resource availability and capacity building; environmental and occupational determinants of kidney disease; paediatric kidney care; and the institutional framework necessary for ensuring improved clinical outcomes through an integrated continuum of kidney healthcare.