The status of Chronic Kidney Disease in India
So how is it to live with chronic kidney failure in India?
As with most things Indian there is no single answer but many possible ones. But on the whole, one would have to say that the quality of life for people with kidney failure leaves a lot to be desired.
The numbers are mind-numbing. Almost 3,00,000 Indians are diagnosed with end-stage kidney failure (the last stage of chronic kidney disease) every year. A full 80% of them die in the next one year. Only about 10-15% get any amount of dialysis that is the treatment for kidney failure. What contributes to this is a deadly cocktail of self-neglect by patients, a non-existent national policy on chronic renal failure, an army of quacks promising “definite cure” for the disease, a massive talent crunch of trained professionals and, of course, the large costs involved in the treatment. The number of people who suffer from milder forms of the disease is estimated to be at least 15% of the whole population! The numbers elsewhere in the world are similar. This is an article from the National Kidney Foundation of the US about chronic kidney disease in the US.
Diabetes is a big cause of chronic kidney disease in India
India is the diabetes capital of the world. And diabetic kidney disease is the commonest cause of kidney failure here. But all too often management of diabetes is reduced to popping a few pills every day and may be checking the blood sugar levels once in a few months. On a daily basis, one sees patients taking medicines prescribed to them years or even decades ago!! It looks as an event rather than as a process. A small but not insignificant minority display early stages of kidney failure but their management leaves a lot to be desired.
The first hurdle is accepting that one has “kidney failure.” I would say that this is the biggest hurdle to better management of kidney failure. Although it sounds daunting “kidney failure” is not a one size fits all description. In fact, most people with kidney failure fall into the milder categories and won’t require dialysis in their lifetime. It can be managed but not cured. Lack of acceptance leads to a series of behaviours which is counterproductive in the medium to long term.
Looking for miraculous cures hurts good long term outcomes
The first such behaviour is to look for non-existent cures for the disease. It is a well known medical fact that chronic kidney failure can be managed effectively but not cured. But this hasn’t stopped unscrupulous quacks from promising “guaranteed cure” or “definite cure” for the condition. Some promise to do it through herbs and others with various fad diets. The bolder ones might inject “ozone” into the patient’s veins while the boldest ones promise a cure by changing the direction in which the patient’s head points while he is sleeping and eating. Various systems of medicine endorse without any inhibitions. The “side effects of allopathic medicines” is a popularly invoked devil to lure the patient away from established treatments. The bait is very enticing and most fall for it. Very often I see highly educated and driven individuals misled by the peddlers of snake oil. For we nephrologists, it is very demoralising to lose so many otherwise manageable patients to all these unproven therapies.
And so it happens that the patients lose a lot of time while searching for the elusive cure. They become very anaemic (haemoglobin values of 5 and 6 are very common, the normal being at least 12), lose their appetite and tens of kilograms in weight, have severe nausea and vomiting, become breathless and puffed up with fluid retention. Very often they develop sudden serious events like fits, cardiac arrhythmias (ineffective heart beats), cardiac arrest, etc. By the time, the gravity of the situation is realised it is often very late. The task for the nephrologists and others in the team is very steep and uphill once the patient is brought in such a state. Sometimes we succeed in getting the patients out of the woods but many times we don’t.
If all this was not enough, patient and relatives then have the unenviable task of negotiating the humongous Indian health system looking for a hospital that provides the most bang for their buck in dealing with chronic kidney disease. Once the patient is sick the already high cost of care increases further exponentially. Most patients pay out of their savings that can be drained very quickly. Some states have no infrastructure at all and often patients traverse from one end of the country to another looking for treatment. There are only 1,300 nephrologists for a population of 1.3 billion (by comparison South Korea has the same number for 25 times less population). While there are many honourable exceptions, generally state run hospitals outside of capital cities are not equipped to handle such patients. The better state run hospitals are chronically overloaded and are under intense pressure to stabilise the sick ones and refer them elsewhere for further dialysis. The cost of dialysis in private hospitals even though modest by global standards (about USD 25 -40 compared to USD 400-500 in the U.S.) is still prohibitively high for most Indians. Most just stop dialysis for purely financial reasons. Many charitable hospitals provide highly subsidised dialysis but again it is not nearly enough. In southern states, the government pays for dialysis but it is a one size fits all approach that many times does not benefit the patient.
Proper and timely treatment can lead to good long term outcomes
The situation need not be so bleak. With the treatment options that are available one can lead a productive life even after being diagnosed with chronic kidney failure. Erythropoietin injections can keep the haemoglobin and energy levels up. Medicines are available to keep the fluid content of the body under control and manage other consequences of chronic kidney disease. Some basic dietary modifications will keep the kidneys from being overly stressed and prolong the time to dialysis. Once the kidney function reaches about 20% of normal one must start preparation for dialysis. With proper preparation starting dialysis can be a very smooth affair with no admission to the hospital required at all! If a suitable kidney donor is available, then preparations for transplant can occur simultaneously.
All this is not to say that there are no bright spots at all. Though the number of kidney specialists is meagre and they tend to get concentrated in large cities, many tier 2 cities have caught up in the last decade. Most of the kidney specialists are well trained and able to handle the patients competently. People are more aware than before and proactively seeks treatment. In spite of so many hurdles, we do see a few patients who follow our advice religiously and do very well. Patients surviving on dialysis for several years and leading very meaningful lives in not as rare as it used to be. Many social service organisations have taken up the task of improving the care of kidney failure patients and are doing a commendable job of it. The huge number of patients presents a real opportunity to understand the disease better and may develop therapeutic interventions. There is an opportunity to try different models of providing patient care in chronic kidney disease and choose what works best. All this needs that the various stakeholders (patients, doctors, support staff, government, NGOs, etc.) come together and work with a common purpose. Let us hope that they do so.