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.
A Position Statement of Indian Organisations Protecting Public Health
With India facing a public health crisis as a result of rising obesity, diabetes, cancers, hypertension, cardiac diseases, renal disease and mental health issues there is huge concern of people dying due to Non-Communicable Diseases (NCDs). Out of total deaths of about 9 million the current estimate shows nearly 5.8 million people die from NCDs, which is about 60% of annual deaths. The comprehensive national nutrition survey (CNNS) 2016 revealed that more than half of the 5–19 year-olds show biomarkers of NCDs.
Our journey during the early days provided emotional support, guided patients on treatments, doctors and hospitals through Facebook. Meanwhile, we carried out a lot of internal research to gather causes for end state kidney disease, years since acquired and general employment, education status, and consolidated all the data gathered. Through engaging conversations, patients expressed their positive, “feel-good” moments, while caregivers found a platform to give vent to their burdens and outbursts about being isolated from the public and family circles.
Realization came that our healthcare system needs to address concerns of the middle-income group as costs of treatments and medicines for chronic kidney disease is a perpetual outflow without increased sources for management in the absence of public healthcare/ insurance for preexisting health conditions. Our Founder, who is part of the National Oversight Committee for Dialysis Programme has been communicating with the Prime Minister and Health Ministers through a detailed Memorandum to make them aware of our patients’ problems, and give them a glimpse of the harsh realities of this closed community who shun speaking about their sorrows, hardships and pain.
Many a time, patients have succumbed to the disease after the family has sold off their assets, wiped out their personal savings, and even reached out for help from the public. The financial burden wrecks homes, while the loss of lives leave families totally shattered. Their efforts to return to sensibility is a long walk through lonely roads as they struggle to find the strength to stand amidst the crowd, silent on the CKD episodes.
Our strategies to help patients are developed based on the path traveled and touching the weak pulse to plunge in.
After huge personal funding of ₹10 lakhs on seminars, books, website & promotions while donations were almost ₹18 lakhs over a few years, we approached many pharmaceutical companies and were lucky that Biocon Biologics tied up with us to fund some initiatives.
Two major decisions in 2021 set us on the road to serve community in a structured way.
- Public Private Partnership in Patient Funding was the game changer. Introduced during the spurt in SARS COVID and unemployment due to companies closing down or retrenchment, we decided to give support of ₹1000 each for six months to help patients buy medicines.
- Kids with Acute Kidney Injury to receive emergency fund of ₹50,000 for continued treatment
- 99 patients (18 states) received ₹1000 for 6 months;
- 2 patients received part payment for a fistula surgery;
- 3 Kids with AKI received a financial support of ₹50,000 each
- 2 kids got emergency medicines totaling ₹36,775;
- 1 kid’s higher education fee of ₹35,000 was paid;
- Other Trusts received a donation totaling ₹111,500.
AKI support for kids below age 14 years:
A unique initiative to save kids from end stage kidney disease was launched. The shock that young parents face when a baby is hospitalized can be understood by anyone. At a time when treatment by emergency dialysis to kick-start the kidney is suggested, apart from the growing uncertainty and fear, the worry about long-term financial strains looms large.
KWF offers ₹50,000 for treating kids with acute kidney injury. This support generates a lot of HOPE. This dialysis treatment is a lifesaver!
Kidney Warriors Foundation has helped three kids in 2021 and one kid in April 2022. The treating doctors refer such cases to us after kids are admitted in the ICU and when they discover parents are unable to bear costs of treatment. If you wish to help us in improving lives of kids, please feel free to donate funds. You will get 80G benefits.
KWF launches a series of videos focusing on Diet Management in CKD.
KWF felt the pressing need to disseminate the information in our book Nutritional Secrets among a wider audience, so that a larger number of patients and caregivers can benefit from the abundant information it contains. To achieve this goal, Nutritional Secrets is being shared in the form of a series of videos, where dieticians and experts speak about the different components of a diet suitable for kidney patients. The series begins with a video featuring an Introduction, followed by a Promotion showing the usability of the book, and goes on to present information about the various elements of a diet, namely, macronutrients and micronutrients such as Protein and Carbohydrates, Sodium, Phosphorus, Potassium, Fluid, Fiber and Fats.
In 2013, at the World Congress of Nephrology, the International Society of Nephrology made the vision statement for the world to prevent deaths due to treatable acute kidney injury (AKI). Each year there were 13.3 million reported cases of AKI, with developing countries burdened with approx 11.3 million. Working towards this ambitious project, International Society of Nephrology launched the #0by25 campaign, to reduce preventable deaths from AKI across the world by the year 2025. The aim was to create global strategies for early diagnosis and treatment of AKI among patients with reversible diseases.
This initiative focused on bringing in infrastructure, training and education through need based projects. These were particularly designed to meet the needs of developing countries and disadvantaged populations.
Women across India, living in rural areas face similar issues: Long working hours, poverty, financial constraints, illiteracy, lack of proper hygiene, unconcerned husbands, and medical complications. Poverty, illiteracy and lack of medical facilities inhibit women from reaching out to the nephrologist in time, thus delaying treatment. Their faith in local quacks proves to be a major hindrance. A vital issue is the marriage of young girls who have been afflicted by the disease. Questions of who will marry them, will they survive, will they concieve? – form an endless list. KWF has started campaigns towards creating awareness amongst these women.
The coronavirus raised its hood in advanced countries in Europe and the United States of America sometime in December 2019. In early March, when travel restrictions were being applied, foreseeing problems in supply of imported medicines and consumables, KWF took a preemptive step to warn patients to stock medicines.
When the Government promoted social distancing, dialysis patients found few city autos on the streets. KWF’s Sejal Jobanputra’s tweets caught media’s attention with Hindustan Times carrying a story on 23rd March with interviews of affected patients. By 24th March, complaints came from other parts of India of patients unable to reach their dialysis centers. The police were strictly following orders, immobilizing patients who needed emergency treatments.
The incidence of kidney disease has been steadily rising. According to studies, young people are being affected more than ever, which raises a huge concern among global kidney communities. In our efforts to take corrective steps to check prevalence of the disease, KWF decided to focus work around ‘Preventive Measures’ in 2021. We conducted a Patient Advocacy Webinar on high salt, sugar and fat content in Ultra Processed Foods.
In March 2023, we explored a new approach to address this mammoth disease that has shaken many homes with a CKD patient. The country needs to plan better to handle this public health concern, and the world needs to respond to the ‘call of the hour”.
Why are Preventive Measures growing in significance?
We gathered alarming information from authentic research studies, and together with our personal experiences with CKD, we worked with best considered decision.
Chronic Kidney Disease data:
“CKD is increasing in prevalence – and at an alarming rate. CKD deaths increased by 41.5% from 1990 to 2020, rising from the 17th leading cause of death to the 10th. Now, it is expected that CKD will climb to the fifth leading cause of death globally by the year 2040.”
- Of the estimated 220 million people in India living with hypertension, only 12% have their blood pressure under control
The burden of diabetes is high and increasing globally, and, in developing economies like India, is mainly fuelled by the increasing prevalence of obesity and unhealthy lifestyles. The available data in 2019 showed that 77 million individuals had diabetes in India, which is estimated to rise to over 134 million by 2045.
Initiatives for Prevention of CKD
Screening for Prevention:
Recognising the need, we planned a “CME” – Continuing Medical Education for knowledge sharing and developing strategies to stop spread of CKD through timely intervention. This CME will involve diabetologists, cardiologists, ophthalmologists, general physicians and gynaecologists to be part of the convention.
The conference will highlight signs, symptoms for chronic kidney disease that emerge from hypertension, diabetes, eyesight issues, different stages of pregnancy, and understand acute kidney disease due to protein supplements, excessive drugs and strong medications.
Screening for checking if people are “at risk”:
- Blood pressure
- Blood sugar
- Urine dipstick to check presence of protein
Specific areas of focus while engaging with people in the diabetic and hypertension community, to understand if they are at risk:
- Awareness of family history of hypertension/ diabetes
- “Know your numbers” for blood pressure and blood sugar
- How well are the parameters managed?
- Early attention through medical intervention for kidney function tests, protein in urine and scans
- Compulsory annual testing
Tests suggested for monitoring health
& and to protect against CKD
- Blood Pressure
- HbA1c test—a simple blood test that measures average blood sugar levels over the past 3 months
- Urine test for protein and sugar levels
- Kidney Function tests – every 6 months for people with high BP and Blood sugar levels
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.
Kidney Warriors Foundation is grateful to have some huge hearts willing to help. Our initiatives would not have been successful without their contribution. If you feel inspired by them, please donate to help our cause. Donations made to Kidney Warriors Foundation are eligible for tax exemption under section 80G.
When our caregiver warrior, Virendra Singhal showed immense generosity in his moment of grief.
Mayank Singhal was diagnosed with CKD as a result of Alport Syndrome at a young age, when he was happy and carefree, and full of dreams for a bright future and a career. The diagnosis and treatment that followed put an end to his dreams and hopes. Mayank had to start peritoneal dialysis in July 2015, eight years after his diagnosis. This was the best option when facilities for hemodialysis were limited in the hilly region in Dehradun where he lived, and when initial attempts by doctors to create a fistula for him failed.
Online Yoga classes conducted by our caregiver member Saurabh Agrawal
For people with CKD, physical activity is imperative in order to overcome the manifold side effects of dialysis and medications. Although walking is considered the best form of exercise, it can be supported by other forms for better outcomes. Yoga is one such form that can be practiced by people of all age groups for greater flexibility, better muscle strength, improved bone strength, increased blood flow, improved heart rate, and control of blood pressure and blood sugar. It also helps in relaxation which, in effect, improves sleep. Responding to the need expressed by several members of KWF to include meditation and relaxation as part of a patient’s routine, Saurabh Agrawal, a certified yoga instructor, volunteered to conduct yoga sessions for the members.
Women’s Health & Pregnancy in Chronic Kidney Disease
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.