Why CKD continues to baffle us?
In 1962, Chronic Kidney Disease scene in India was vastly different. When a known family lost five of six kids between 10-16 years to a kidney ailment within a span of five years, the surviving family members were drowned in silence. Today, India is a different country, with well qualified nephrologists, seasoned with 40-50 years experience, second and third generations sharper in training and practice,standing on par with international nephrology standards. We are shoulder to shoulder in terms of medical knowledge and levels of treatments available. But a pandemic like COVID19 shows us many gaping holes that need sand filling.
Kidney Warriors Foundation (KWF) is aware that certain areas are problematic, and our ears were on the ground waiting to hear about patients'woes. Much of the vital communication that could help us bridge gaps never came through even from our top 10 metros. So our deep worry about mini-metros, towns, city outskirts and rural pockets can never be fully empathized with.
While Mumbai made waves of a kind, Delhi's story was different. Mumbai's middle-income populace continued to struggle to find shelter for dialysis across Trust-run centers, while issues in Delhi came sporadically, often late for action. Chennai was streamlined, but Bangalore is now showing signs of patients stranded for a COVID+ dialysis center with a ventilator. Meanwhile, Kolkata is slow in responding.
KWF is left wondering about the situation in Patna, Bhopal, Aurangabad, Chandigarh and countless other places. During the early days of lockdown, patients from the remote outskirts of Rajkot felt the heat of unavailability of public transport, but thereafter, there was a stony silence. Presumably, everyone is safe.
As a country with CKD population supposedly growing, we continue to be naïve or choose to ignore the urgency formaintaining an accurate database of people succumbing, with cause and reasons for death. This year, we may complacently raise our arms to say, "Not our fault", but the sheer number of casualties around us has not succeeded in wiping away our lethargy. A few years ago, a nephrologist from a smaller country remarked on our lack of a much needed database. For years now, our estimates of CKD are randomlyquoted without adhering to consistency. There's a hope that behindevery worried foreheadisan active mind that can spell a change. Any bystander can see India's huge intellectual potential for devising strategic plans to resolve aproblem that needs us to leave our stubborn perch of comfort in seeking truth.
Ever since KWF began work, we realized areas where we could contribute, and worked assiduously in those spheres. We are connecting patients to CKD knowledge, and providing dietary information, while getting enough public attention to burning issues such as employment,insurance or ordeals faced by dialysis patients. Stories of chronic kidney patients are real and extend far beyond illicit organ trades that have served to malign our main objective–The Right to Survive.