Raji* was feeling increasingly distraught as she waited at the doctor’s clinic with her 14 yr old daughter. The teenager had not been eating well and was losing weight for the past 6 months. She was always tired and no longer resembled the bundle of energy she had been so far. Multiple different general practitioners and specialists had not helped. Raji had hoped that the tests ordered by this latest doctor will finally give her daughter an answer and a cure. But instead, she now felt like the ground beneath her feet was giving away. ‘Advanced kidney failure’, he had said. Her mind was drowning in a never-ending gush of questions: Why? Since when? How? What did she do wrong? How did she miss the symptoms?
The scenario described above is all too familiar for nephrologists in India. This recent article does a good job of comprehensively covering the challenges faced by patients and medical professionals involved in renal care in India. The highlights of the article:
- India-specific challenges: India has the world’s second largest population, a significant fraction of which live in abject poverty. The meagre government-allotted expenditure on healthcare (around 2% of GDP), is spent, and usually justifiably so, towards addressing communicable diseases which still pose a huge healthcare challenge. Most importantly the country’s 1.3 billion people are served by 1,850 Nephrologists mostly clustered in India’s cities. That’s about 1.4 nephrologists per million population (PMP), compared to 28.5 PMP in high-income countries.
- Risk factors for CKD: The huge and still incompletely detected burden posed by diabetes and hypertension is well known, but the sheer numbers are perhaps not grasped. A 5% crude prevalence of diabetes represents 97.5 million people, and 25.3% crude prevalence of hypertension represents about 330 million individuals. And a scant 1,850 nephrologists to pick up the pieces when these, poorly controlled patients develop CKD. Moreover, Indians are also at risk for CKD due to the highly prevalent low birth weights resulting in smaller kidney volumes, cultural practices that increase the risk of CAKUT, and exposure to a whole gamut of nephrotoxins ranging from indigenous medicines, agro-chemicals, chronic dehydration due to the tropical climate, and water contaminants and pollutants.
- ESRD: All modalities of RRT pose a significant and often unmanageable financial challenge to Indian patients, most of whom do not have access to any form of health insurance, approximately 12-13% from a recent survey. The cost of dialysis in India, using local estimates at a public sector hospital ($64 per session, $9200 per year) is about 6 times higher than the average per capita income ($1670 per year). Most patients with renal disease are diagnosed in end stage and this fact brings with it management challenges including greater anemia, initiation of dialysis without an AVF, poorer Hepatitis B immunization rates and greater morbidity and mortality. HD units which are largely privately run and disproportionately clustered in urban centres are inaccessible to India’s rural poor. Transplantation in India is plagued by the same supply and demand issues observed in the rest of the world. Deceased donor transplantation lags significantly behind living donor transplantation.
The authors of a CJASN review suggest solutions to these problems, many of which are already in various stages of implementation. These include better awareness and screening of patients, improving access to nephrology care and renal replacement therapy and improving organ donation rates. But what struck me the most, was the fact that given how gargantuan the problem facing Indian nephrology is, the most cost effective solution has to be better screening and awareness. This statement is backed by the pioneering work done by Indian Nephrology legend Dr M K Mani. His Kidney Help Trust has been working since 1997 and has adopted and screened and treated 33 villages near Chennai, India covering a population of 25,000 people. The cost incurred by the Trust is an astoundingly low 43 cents per capita for the study population per year. They were able to control the BP of patients to <140/90 in 96% of the study population and bring HbA1C down to 7% or less in 52% (read more about the program here).
All of this brings me back to the person that inspired this post, Raji or as she is officially known, Mrs Rajalakshmi Ravi. Happily for her, her daughter received a living donor kidney transplant and is doing well. She even went on to become a doctor herself. But the experience set Raji thinking about how much she missed out on early signs and how little people around her including primary care physicians seemed to know about kidney disease. So she set about learning everything she could, which took a considerable degree of effort given that she has a degree in Economics and had no prior exposure to medical education. And then volunteered her time and new found learning to TANKER Foundation which helped her set up The TANKER Awareness and Prevention Program. This has been a one woman show since its inception, driven forward by Raji’s zeal and passion to try and ensure that someone else will be spared the shock and frustration that she felt on learning her daughter’s diagnosis. She has conducted more than 850 awareness programs all over Tamil Nadu reaching out to schools, corporations, government institutions and just about anyone who is willing to listen to her. To date she has reached out to nearly 130,000 people. The screening camps (people are screened for proteinuria using a dipstick and BP mostly, but also serum creatinine and an ultrasound when resources permit) supported by TANKER staff and volunteering doctors have screened more than 23,000 people and directed those detected to be at risk for specialised care. I volunteer for these camps. Raji’s passion for this work is infectious and her connection with her audience is enviable. I am convinced more than ever, that the only way India will get a grip on its silent CKD epidemic is by building an effective national screening and awareness program that includes not just medical staff and government and private health services, but also the patients themselves. An informed and empowered patient or caregiver, like Raji, represents the best way to make the patient also a meaningful stakeholder in the war on CKD.
Sanjeev Nair, Nephrologist, Chennai and NSMC Intern, Class of 2018
Member, ISN Education, Social Media Team
*Real name. Used with permission. Paisa and Rupees refer to the Indian currency, corresponding to cents and dollars respectively