Kidney Warriors Foundation wrote to the Central and State Governments on the basis of complaints received from patients that some of the dialysis centres under the Pradhan Mantri National Dialysis Programme (PMNDP) were being run by technicians without the guidance of nephrologists.
In our endeavour to address long waiting lists, and get more patients on dialysis to achieve their transplant goals, we undertook a close study of the existing transplant laws. It was necessary to check if any tweaking in laws could add more dimensions to increase organ donation.
While getting clinical trials down in western countries seems the road forward, we have found great hesitancy for our people in India to get experimental. To make patients in the kidney community understand the true value of such studies, a special session was held with Dr Arvind Canchi.
Health issues of women do not get as much attention or focus as that of men. Women themselves often ignore symptoms of disease and do not heed warning signs issued by the body. The disparity in access to health care by men and women is proved by statistics which show that the incidence of certain diseases is similar in both men and women, but the percentage of men actually availing treatment is far higher than that of women. Very often, this is the result of the deeply ingrained societal belief that men are superior and bread-winners of the family, and therefore deserve better health care, and even nutrition. With such a situation prevailing, even serious and life threatening conditions go undetected in women.
In the case of kidney disease also, the plight of women is no different. Women are also more likely than men to donate a kidney, while more men than women receive dialysis or undergo kidney transplantation. Even certain government health schemes for the benefit of patients, like free or subsidized treatment or medicines, are utilized more by men than by women. This indicates that expenditure is also not always a criterion for women being denied adequate health care.
Patients have many doubts regarding post-transplant care, especially with regard to ‘tac level’, a concept encountered during post-transplant follow-up. KWF organized a session on 4th September, 2020, with Dr. Vijay Kher, Chairman, Nephrology, Medanta Kidney & Urology Institute, New Delhi, to address concerns and queries related to maintaining tac level. The session was moderated by Maryann Manasseh.
At the outset, Dr. Vijay establishes that kidney transplant is the best treatment for kidney failure, by providing statistics for the survival of transplant patients in comparison to patients on dialysis. A transplant provides the best long-term outcome in terms of improving the quality of life and being cost-effective.
Genetic diseases can affect many members of a family over generations. Learning to catch early signs of the disease can enable effective treatment, since it can help to change the course of the disease or prevent its advancement. In a webinar moderated by Anjali Uthup Kurian, Dr. Sree Bhushan Raju, Professor and Head, Department of Nephrology at Nizam’s Institute of Medical Sciences, Hyderabad explained the genetic causes of kidney diseases. Although a difficult area of study, Genetics is important since every aspect of an individual’s external and internal features is determined by his genes. Dr. Raju establishes that having a family history of diabetes, hypertension, heart disease, are genetic risk factors along with obesity, race and ethnicity.
An interesting webinar on the diagnostic procedure known as biopsy was held on September 9, 2020. The guest speaker for the event was Dr. Narayan Prasad, Professor, Department of Nephrology, SGPI, Lucknow, and the event was moderated by Maryann Manasseh and Mr. Anand Lal Banerjee. Dr. Prasad interacted with participants in Hindi and English, explaining in minute detail, going into all the intricacies of the need, process and outcome of a kidney biopsy. He began by showing a video of a biopsy procedure being carried out to demonstrate the precision with which it is conducted.
As kidney warriors, we are often plagued by many doubts and worries. Due to lack of time or resources, we may not get a chance to get them addressed during our routine doctor appointments. In this fifth episode of the Kidney Warrior educational series, we got a unique opportunity to get answers from Dr. Raju Balasubramaniyam to several pertinent questions. The exclusive question and answer session was hosted on 8th September 2020 by KWF, and moderated by Maryann Manasseh and Shantanu Saha.
Patients with CKD, undergoing dialysis, or post-transplant, have to deal with various issues and complications related to disease management. While health issues assume priority, dealing with work related matters, concerns about a career, managing finances, etc. are also issues that require equal attention. Being able to successfully strike a balance between all these will ensure a happy and stress-free life, keeping one motivated to remain active and productive in spite of kidney disease.
Our third event, the first one in Hindi, was on a highly specific area related to the preparation for kidney transplantation. This episode was hosted by MaryAnn Manasseh who was joined by Harshit Bhatia, a transplant recipient and member of KWF. In this episode, Dr. Amit Langote, Nephrologist at Apollo Hospital, Mumbai, educates us about HLA and Antibodies and the role they play in transplant.
