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Challenges related to chronic kidney dialysis patients

Aseem Garg
Wednesday, May 25, 2022, 08:00 Hrs  [IST]

The global dialysis population is growing rapidly, especially in low- and middle-income countries, where there is a rise in non-communicable diseases. Chronic Kidney Disease (CKD) is the sixth fastest-growing cause of death. Globally, in 2017, 1•2 million people died from CKD, and the mortality rate from CKD increased 41•5 per cent between 1990 and 2017. In India, approximately 1 in 5 adults has CKD. The number of deaths attributable to CKD in India rose from 0.59 million in 1990 to 1.18 million in 2016. Diabetes and hypertension are the main causes of End-Stage Renal Disease (ESRD), and every year about 2.2 lakh new patients of ESRD get added in India, resulting in additional demand for 3.4 crore dialysis every year.

Providing for renal transplant facilities for ESRD patients depends upon infrastructure, funds and organ availability, whether from cadaver or from family sources. Over 2 lakh patients In India wait for organ donation every year with a mere 15,000 donors available. Renal transplant needs super specialty hospitals, seamless donor registries, and huge expenditure is incurred for the surgery in private hospitals and for post-transplant care, making it unaffordable for many families.

There are around 250 kidney transplant centres in India, two-thirds of which are in South India and mostly privately run. Only about 10 per cent of new ESRD cases in India get renal replacement therapy. The government launched the National Organ Transplant Program to facilitate transplantation in 1994. A website www.notto.gov.in and a 24x7 call centre with a toll free helpline number (1800114770) have been made operational.

For a majority of patients, dialysis remains the only option to prolong life. The Union Finance Minister announced the launch of a National Dialysis Program under Public Private Partnership at District Hospitals. India has one of the lowest nephrology workforce densities worldwide in 2016. There are only about 2,600 nephrologists (1.9 per million population), and there is a chronic shortage of dialysis nurses and technicians, with only 4,950 dialysis centres. Most of the dialysis centres are in the private sector, and the demand is less than half met with existing infrastructure. Hence, states/UTs are advised to develop renal transplant infrastructure, donor registry and training for dialysis. Within the limited choices, dialysis remains the first and in majority of cases, the only choice for ESRD patients.

Dialysis patients may opt for Hemodialysis (HD, commonly known as blood dialysis) or  peritoneal dialysis (PD, also called water dialysis). In HD, the blood is filtered through a machine that acts like an artificial kidney and is returned back into the body. HD needs to be performed in a designated dialysis centre. It is usually needed about thrice a week, for about 3-4 hours each time.

In peritoneal dialysis, the blood is cleaned without being removed from the body. The abdomen sac (lining) acts as a natural filter. A solution made up of salts and sugars is injected into the abdomen that encourages filtration and the waste is transferred from the blood to the solution. There are 2 types of PD - continuous ambulatory peritoneal dialysis (CAPD) and automated peritoneal dialysis (APD). CAPD needs to be done 3 to 5 times every day, but does not require a machine. APD uses an automated cycle machine to perform 3 to 5 exchanges during the night while the patient is asleep.

The challenges of dialysis patients face include significant symptom burden, strict adherence to fluid and dietary intake, significant medicine and costs burden, paucity of trustworthy, nearby dialysis centres and so on. While patients value longevity, reducing symptom burden, reigning in costs, availability of reliable information on disease progression, dealing with mental, physical and social challenges go a long way in helping patients cope with the illness, that is unlikely to be reversed. Some key challenges are:

Adequate number of good dialysis centres
When kidneys fail, dialysis helps in removing wastes, salt and extra water to prevent them from building up in the body. It is important to maintain a safe level of certain chemicals in the blood, such as potassium, sodium and phosphorus. Choosing a dialysis clinic is an important decision. You may need to evaluate the staff for experienced, and trained professionals who are sensitive and encouraging, as very often dialysis is the last and the only resort to prolong life. Location and distance from home, cleanliness and availability of nephrological teams are main considerations, as once started, dialysis is a lifelong procedure,  done routinely, twice or thrice a week. The clinic should be able to offer you a schedule that fits your needs, and the option to choose home dialysis. Patients must feel good during and after dialysis and also not catch infections at poorly maintained centres. Reviews and evaluation of dialysis care is therefore a continuous task. During Covid-19 times, many dialysis centres faced operational challenges to get staff to the centres, and in addition to the usual hygiene protocols, they had to be provided with PPEs. 100 per cent hygienic centres are even more important for dialysis patients as they are immuno-compromised.

Rural-urban divide in dialysis care
With most dialysis centres located in urban areas, there is a Bharat-India divide in dialysis care. Although accredited social health activists (ASHAs) provide basic services related to maternal and child health, they do not have the mandate or training to help patients with non-communicable diseases like CKD. Each primary health centre (PHC) serves a population of approximately 30,000, and most are staffed by only one physician. PHCs are often managed by Ayush (non-allopathic alternative system) physicians. Although anti-hypertensive and anti-diabetes medications are listed on the WHO essential medication list for government basic health units, these drugs are usually not available in the government primary care facilities.

Huge costs
Dialysis entails a recurring expense. Each session may cost upwards of Rs. 2,000 at a private dialysis centre. Moreover, dialysis patients may need additional medicines, injections, as well as the anticoagulant drug Heparin–and all these push costs, particularly affecting patients with fragile economies. Besides, most families may be undertaking frequent trips, and often over long distances to access dialysis services incurring heavy travel costs too. This, therefore, leads to financial catastrophe for practically all families with such patients. With substantial gain in quality of life, families continue to stretch financially to make large out-of-pocket spending. The cost of an AV fistula is upwards of Rs. 10,000. An AV fistula provides good blood flow for dialysis, lasts longer than other types of access, and is less likely to get infected or cause blood clots than other types of access.

Poor level of awareness
Most patients and healthcare providers have poor knowledge and awareness of CKD. A kidney patient needs timely referral pathways to specialists at hospitals with adequate follow up care. In absence of access to timely help, only a minority of individuals with CKD and diabetes achieve recommended treatment targets for blood pressure control and glycemic control. Under-diagnosis and under-treatment lead to high rates of adverse outcomes. The implications are much worse in rural areas where an acute kidney failure event is more likely to be fatal.

India has been the sixth biggest private spender on health among low- and middle-income nations. Overall, few Indians -  14.1 per cent in rural areas and 19.1 per cent in urban areas - have any form of private or government health insurance, says a report by the National Survey Office, based on 2017-18 studies. This leaves the vast majority of Indians exposed to health-related financial setbacks, as out-of-pocket expenditure is high. Prevention is the best form of cure. Kidney disease is a silent killer, as initially, there are no symptoms. Having an active life, keeping fit, opting for healthy, wholesome diets, routine checking and control of blood pressure and blood sugar, avoiding smoking and alcohol, routine checking of kidney functions are some ways one can ward off many ills.

(Author is founder and CEO of DCDC)


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