Saturday, April 21, 2018

My Dialysis Wish List

Recently, I was asked what the top three items would be on my wish list for dialysis. I was pretty sure about the top one item. Portability, without doubt. I miss the ability to travel for long periods without resorting to in-centre four-hour sessions. Currently, travel is restricted to a maximum of two nights away from home. If, under some rare circumstances I do have to travel for longer durations, I would need to go to a centre. With NephroPlus dialysis centres in many places now, quality of dialysis is no longer a concern. However, the whole aspect of having to restrict my diet and fluids and laying in bed awake for four hours during a session seems rather painful.


A portable dialysis machine

However, pressed for two more items on the wish list set me thinking. What were the other problems for me in dialysis? Considering that I get daily, nocturnal sessions, I can’t even say less diet and fluid restrictions because I have none. 

Water treatment comes to my mind as a huge pain. First off, the water treatment plant occupies a large space in my home. There are minor issues once in a way. I need to put it on to fill up my treatment water tank once every day I dialyze. So, if there was a way this could be eliminated in some manner, it would be a huge relief.


A water treatment plant

The third thing I would like is for the machine to be able to detect how much water to remove during my session. This is a big problem for me on dialysis. It is also a major problem for many other patients. Figuring out the dry weight is a challenge that has not as yet been resolved satisfactorily. Currently this is done only by indirect methods like checking for oedema, breathlessness, blood pressure, incidence of cramps and hypotension etc. 

There are machines available that operate on the principle of bioimpedance that claim to be able to estimate the amount of excess fluid in the body but their accuracy is questionable. I am sure there could be some way by which the dialysis machine could check the density of the blood and figure out how much excess fluid is there and set the Ultrafiltration target appropriately.




Dialysis has not seen much innovation over the past several decades. Apart from the NxStage System One that addressed the problem of portability, hardly anything else has been released. What the dialysis industry needs today is a major shake-up of things and bring in a wave of innovation that truly addresses the several problems we patients face on a regular basis.




Sunday, April 8, 2018

Prevention is better than (no) cure





What is the best way for a government of a country like India to roll out Universal Healthcare

There are two aspects to consider here. Why would any government roll out Universal Healthcare (UHC)? The straightforward answer to that question is that it benefits the citizens of the country. Food, shelter and healthcare are the three basic necessities for all human beings. If they lack access to any one of them, then it is unfortunate. 

In democracies unfortunately, the main reason UHC is rolled out is that it is a great way to win votes. Since healthcare is such a basic need and it is something that can cost a lot for individuals, making the State provide healthcare in some form is a nice way to become popular and then possibly win the next election.

Now, the two different reasons for which UHC is rolled out - being good for the citizens and becoming more popular can result in two very different approaches to implementing this policy. While the former would entail doing what’s right in the long term, the latter would dictate doing what’s right in the short term.

Allow me to explain.

One very reasonable metric to measure the effectiveness of UHC is the number of Disability Adjusted Life Years (DALY) saved for every dollar spent. DALY is a combination of number of years lost due to premature death and number of years lost due to illness. It is a better metric than simply early death because being diagnosed with a critical illness also causes loss of productive years of one’s life and this also needs to be included in assessing any impact of such programmes.

Now, if you want to get the best bang for the buck, that is, get more DALY saved per dollar by the scheme, it makes much more sense to invest in preventive healthcare than treating diseases already diagnosed. There are several cases where this has been found true. For example, take someone who is diabetic but is not yet diagnosed. The amount of money you would need to spend to diagnose it and then counsel and ensure they take proper measures to delay or prevent other long term complications of diabetes would be much lower than the money you would spend on treating the diseases they would get after some years of undiagnosed diabetes. 

However, when you look at the political considerations, a new metric would make more sense - DALY saved per dollar before the next election. Using this metric, treating people with currently diagnosed conditions would give you the best returns and not prevention. This is because the effects of preventive healthcare can only be long term. These effects also do not have any definite, perceptible and measurable results at the level of an individual. Unfortunately these are the outcomes that can impact elections.

If you keep political considerations out of the picture, in the long term, preventive healthcare yields the best returns. This is truer when it comes to several diseases where there is no cure but only expensive maintenance therapies like kidney disease. 

Sunday, April 1, 2018

Conservative Care must be recognised as an acceptable treatment modality for ESKD




Treatment of ESKD is based more on improving numbers rather than quality of life. There is a mismatch between what doctors consider important and what is important to patients. The recent SONG initiative that was instituted to determine the outcomes that should be tracked in any research going forward found a huge disparity between the outcomes that matter to the two groups when it came to hemodialysis.

While the top two outcomes that mattered to patients were Ability to travel and Dialysis-free time, the doctors thought mortality and hospitalisation rates were most important. This should be a wake up call for medical professionals. They’ve got it so wrong.

As a patient, I can fully relate to the findings of the SONG initiative. To me, how long I live is not as important as how well I live. To keep a patient alive using any means, irrespective of what it takes is a horribly wrong way to think about things. 

Far too many people with ESKD die in ICUs hooked to a million different machines, with broken ribs as a result of resuscitation efforts. The last sounds they hear are of panicking doctors and nurses and beeping machines. Compare this to a peaceful death at home surrounded by your family, listening to soothing music and quietly slipping away. What would you prefer? This is a question everyone in ESKD care needs to ask themselves.

Conservative care should not be a bad word. It should be treated as an acceptable alternative. Let us face the reality. Many people do not want aggressive treatments at some point in their life. Many people cannot afford dialysis. In India, 85% of people who need dialysis do not get dialysis because of the lack of access to treatment or lack of funds to pay for the treatment; often both. Currently, since nobody talks about conservative care, these people are abandoned, left to die. 

Take patients who can afford treatment but are old and frail and have a host of co-morbidities. Today’s healthcare system will try to squeeze every rupee they can from the family and try to treat the patient with aggressive modalities like dialysis. Families do not want to be burdened with the guilt of not ‘doing everything possible’. What happens as a result? The patient is made to suffer the pain of dialysis for days and weeks without any consideration for what their wishes are. I have seen people hate every second of the treatment but yet have to go on, hoping that the end would come soon. Why this torture?

Conservative care needs to be discussed with the patient and the family in both the above circumstances. It needs to be presented as a reasonable option. It should not be looked upon as an ‘abandonment’ but as an acceptable alternative. There should be four treatments discussed with them - hemodialysis, peritoneal dialysis, kidney transplant and conservative care. They should be made to understand that conservative care will involve visits to the doctor, blood tests and other investigations and medications which would ease symptoms. It should not be seen as a ‘lesser’ option.

However, I am gloomy about this. In a country where even a therapy like Peritoneal Dialysis is not discussed with newly diagnosed patients, will Conservative Care even be considered? Until healthcare systems become more mature and genuinely more patient-centric, thousands of ESKD patients will continue to die violent deaths in ICUs when a peaceful passing at home could easily have been made possible.


The Supportive Care Continuum

Treatment of ESKD should not be only about treating numbers. Treatment should be of a unique individual with differing needs. Unfortunately in our country, we have only about 1500 nephrologists for a population of 1.2 billion whereas in developed nations, the ratio is much better. This leads to an unrealistic focus on only major problems from a scientific perspective. These are problems that can increase the likelihood of death or hospitalisations. 

However, patients are often more bothered about other things. For dialysis patients, things like itching, lack of sleep, pain and depression could be really bad. These do not come in mainstream medicine that is practised by nephrologists. So, little attention is given to these symptoms. However, in the patient’s mind, these symptoms often take a disproportionate amount of attention. Eventually their Health related Quality of Life (HRQoL) plummets. In India, this is very rarely talked about, forget about measuring and treating it.

This image (taken from the Executive summary of the KDIGO Controversies Conference on Supportive Care in Chronic Kidney Disease) beautifully illustrates the continuum of supportive care.


The blue area is regular care which could include things like dialysis. The green area is supportive care - care that treats symptoms that may not be life-threatening but very important from the patient’s perspective. As you can see, supportive care should be there right from the beginning. Typically, the needs for supportive care increase with duration of time on dialysis. After a certain point of time, hospice / palliative care is the only thing that is recommended, not aggressive therapies like dialysis.

Unfortunately this aspect of treatment is grossly ignored today. This results in low HRQoL scores of patients which if measured, would scream and say that some important things are not being addressed. The focus of treatment should be the patient, not the patient’s blood test reports. Of what use are normal blood tests if the patient is not feeling good? It is important that the patient feels better and is positive about his health. Most patients value things other than what their doctors think they value. This is a fundamental truth in today’s healthcare being practised around the world.

This is like the famous Birbal story where there was a man looking for a ring under the lamp post even though he had lost it elsewhere just because there is more light there. It’s time we looked in the right place.

The curse of Social Media



There’s a lot of noise these days about the problems with special media platforms especially Facebook. This follows the revelation that the data of about 50 million users was leaked to a company, Cambridge Analytica who surreptitiously exploited a feature in Facebook. To me, the problem is not even the issue concerning the privacy of data that everyone seems to be targeting. I don’t care if any company has access to my Facebook data. There is nothing of significance or secret there. 

I am more worried about being uncontrollably hooked to the platform. I recently heard a Masterclass by Psychologist Adam Alter as part of my meditation app, Calm, where problems with platforms like Facebook was explained. I was thoroughly impressed with the class. I recommend it to everyone.

Social Media takes up so much of our attention. The trouble is the continuously scrolling feed and the lack of a ‘stopping cue’. When you read a newspaper or a book, there is a well-defined end point. In the Facebook timeline, there is none. This means that you can perpetually keep scrolling. 

Another problem is the instant gratification. When you post something, you get a high when someone likes or comments. You keep checking from time to time how many likes and comments you get. One thing that I have noticed is that the attention span of people is getting lower and lower. Post a picture and you get many likes in a short amount of time. Post an article and the numbers of likes reduces drastically. People just don’t have the time to read through anything even slightly long even if it’s something important or interesting.

The like and comment features cause another disturbing change in you. You start valuing yourself based on these. You look for such positive affirmations for yourself in these shallow ways.

And then there’s the FOMO (fear of missing out). You don’t want to miss anything that’s happening in others’ lives.

I recently removed all social media apps from my phone. I really enjoy the few minutes of boredom from time to time - in the elevator, in the car, between meetings, while walking down the hallway of my office. All these periods used to be spent looking into my phone screen earlier. I haven’t yet completely deleted my Facebook and other social media accounts. I can still access them from my iPad (which is my primary work computer these days).

I have begun hating Whatsapp as well. What started as an instant messaging system has now become an instant disturbing system. When I am dong something important, I get a million Whatsapp notifications about what others consider important and I often don’t give a fuck about. I have turned notifications off recently. I have got a lot more peace in return.

At the end of the day, it all boils down to whether you have control over social media or whether it has control over you. If used well, it can do some great things like putting you in touch with long lost friends. If not, you can end up becoming obsessed with it and letting it take over much of your life.

(If you made it till here, congratulations, you have a fantastic attention span.)

Tuesday, March 27, 2018

ESKD Global Health Summit 2018 - UAE



(Cross posted from The Atypical HUS Alliance Action website.)

I was invited to participated in the 2nd ESKD Global Health Summit at Sharjah organised by the International Society of Nephrology (ISN) from the 18th to the 20th of March. The overarching objective of the summit is “Increasing access to Integrated ESKD Care”. Specifically, the objective of this edition was:

“… to design a global strategy to better understand the global differences in ESKD care, support ESKD care development in LMIC, and consider the ethical, financial, and cultural issues involved in the expansion of ESKD care.”

LMIC is Low and Middle Income Countries. LMICs are seeing the fastest rate of rise in ESKD incidence.

About 90 people attended the summit and the participants were predominantly nephrologists from various parts of the world, many of them stalwarts in the field. There were also a couple of nurses and a representative from the World Health Organisation.

From time to time, the ISN gets requests from various LMIC about implementing ESKD care services as part of an initiative to implement Universal Healthcare (UHC). The ISN wanted to design a 5-10 year strategy to improve Integrated ESKD care especially in LMIC. LMIC have peculiar challenges. The goal was to arrive at a plan to overcome these challenges with respect to ESKD care. 

Eight working groups were created to deal with different aspects of this goal. Each participant was assigned to two of the eight working groups several months before this summit. Preparation started many months in advance and documents were drafted on how to deal with each aspect. Each working group then presented initial plans and the working groups then met independently to brainstorm on key questions and issues that remained and finally presented a broad plan to the entire group.

The entire exercise was very insightful. It was very useful to hear about situations specific to countries from around the world.

There were many themes that occupied centre-stage. One was patient-centred care. Everyone agreed that patients should be included in any such exercise. They had invited a couple of patients other than me but they could not attend. 

Another central theme was that “PD first” seemed to be a very good policy especially if PD fluid could be manufactured locally. Many nephrologists were unhappy about one company controlling the entire PD market and expressed a hope that this would change.

Preventive mechanisms for kidney disease was obviously the best option. However, access to healthcare facilities was the biggest challenge in many countries. There was a discussion around having a pyramidal structure where Primary Healthcare facilities work on basic detection of kidney disease and then referrals happen to Secondary and Tertiary Facilities for follow ups and treatment.

This entire exercise is going to result in some strong policy recommendations and a series of journal manuscripts that will address this major problem.

One important takeaway for me was that whenever any such scheme is rolled out, the goal should be to touch and save as many lives as possible. This is not very good news for people affected by a rare disease. The drugs that exist for these rare diseases are so expensive that the expense incurred on treating one patient could potentially save hundreds of lives with other conditions. Honestly, I am ok with this. This is a reasonable way to go about such initiatives.

The ISN must be commended for including patients in this very important summit and I hope they continue to engage with patients in all such programs. After all, they are the affected party.  People and groups involved with matters concerning patients should, in all arenas and at all stages, strive to increase meaningful insight and discussion with “Patients Included” in projects, policy, clinical settings, and research initiatives.






Saturday, March 17, 2018

Why not thrice weekly HDF compared to Daily Nocturnal HD?





I recently blogged about why Daily Nocturnal HDF wasn’t recommended to me by some experts in home HD. One of my colleagues at NephroPlus, Rajesh, asked a very pertinent question in the comments: “But why go for long durarion and frequent HD when you can get the benefits of HDF with shorter and less frequent sessions?”

Great question, Rajesh.

The reason is fluid removal. Any type of dialysis primarily performs two functions - toxin removal and fluid removal. Since the kidneys are not performing well for someone on dialysis, the excess toxins and fluid in the body need to be removed. This is done by dialysis. Now, while the toxin removal rate can be improved by various methods like increasing the blood flow rate, dialysate flow rate, using a better dialyzer etc., the fluid removal is constrained by one important factor that cannot be changed - the body’s ability to lose fluid without having side effects.

The average human body can lose only about 400-500 ml/hour during dialysis without experiencing side effects. Removing fluid more rapidly could lead to symptoms like muscle cramps, hypotension etc. Whichever modality of dialysis you choose, however high or low you set the blood and dialysate flow rates and whichever type of dialyzer you use, you cannot change this fundamental characteristic of the human body.

By doing daily, nocturnal HD, you are giving more hours of dialysis which means you are removing the fluid over a longer duration which reduces the rate of fluid removal to well below this 400 ml/hour limit. This enables you to drink significantly more fluid and yet not experience the side effects of rapid fluid removal.