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.

Monday, March 12, 2018

SC ruling on euthanasia and living will does not go the whole hog

The Supreme Court in a recent ruling made passive euthanasia legal and also legalised the process of creating a living will.

Let us first talk about the passive euthanasia part. This tackles the issue when there is no hope of recovery. This is a good thing. This should have been a no-brainer. Unfortunately it has come too late. Many people have suffered for years in pain due to the absence of such a law. Of course, there might have been many cases where the doctors and family might have quietly pulled the plug to save the patient the agony of being a vegetable waiting to perish. Good for them.

However, an important question still remains. What can be done when there does exist a treatment but it is worse than the disease? Yes, there could be betterment down the road but the path is torturous and full of suffering. If the patient would like to decide that they do not want to endure that pain and that they would like to withdraw from treatment, they should be allowed to do so. Currently, even after this ruling, this is still illegal which is a travesty of justice.

We’ve all heard of cases where patients in ICUs have been recovered, but at what cost? They were left with broken ribs due to the resuscitation attempts. What are the chances of such processes helping recovery? Many people die in ICUs after spending several days inside with tubes and needles in every conceivable space. Wouldn’t it have been better to die in peace at home surrounded by your family? Medications exist which can make the end peaceful despite several health issues.

I am not advocating that make the above method the default process. All I am saying is give the patient the choice. That is the least we can offer.

This brings me to the living will. A process has been defined to execute the living will and you can read about it here. There is one major problem with the process outlined. It is so laborious and complicated that I doubt if anyone will actually undergo the hassle. The process for the will to be enacted when the patient actually becomes comatose is also so long and arduous that it looks to me like the process will take weeks if not months. The purpose of the living will will be defeated by this process.

I understand the court’s concern while drafting the process. The concept of the living will can be misused by people with nefarious intentions. But I don’t  think the solution outlined is the answer to this problem.

However, like every such major change, iterations are inevitable. It is too much to expect to get things right in ther first attempt. Let us hope that the last word on this has not been said yet.

Sunday, March 11, 2018

Daily Nocturnal Hemodiafiltration - Yay or Nay?

There’s a lot of buzz these days around Hemodiafiltration (HDF). Various studies have shown that HDF offers better clearances - even of middle molecules, the recovery time is shorter and so on. This results in better outcomes. Ther main principle behind HDF is that the clearance is due to convection rather than diffusion (which is the method by which toxins are cleared in regular HD).

I had been advised to switch to HDF as well by various people. I do daily, nocturnal hemodialysis currently. I dialyze for seven and a half hours, five times a week. After hearing all the buzz, I thought maybe I should also try HDF. Daily nocturnal HDF would be a killer combination - the benefits of longer duration and a higher frequency along with convective clearances that HDF gives.

Or so I thought.

I checked with some experts in the area of more frequent, longer duration dialysis. There was a consensus that for those who do more frequent, longer duration dialysis, there is enough toxin removal. In fact, some stuff was removed so well, phosphate for example, that it had to be supplemented (like for me). The levels of Beta 2 Microglobulin and homocysteine were also normalised. There was also a fear that the things you don’t want removed like amino acids and drugs would be removed. They did not know anyone on this modality. Some also felt that the cost of the treatment would shoot up unnecessarily and water quality monitoring would need to be bettered.

All this put Daily Nocturnal HDF in the “not recommended” category.

Good for me.

Saturday, March 10, 2018

Tajdaar e Haram by Atif Aslam

I have been listening and appreciating Atif Aslam for ages now but did not know that he was called Atif Aslam. Recently however, I chanced upon this song, “Dil Diya Gallan” from the film Tiger Zinda Hai and was totally mesmerised. What a masterpiece!

I started researching about the singer and had this Aha moment. “Ok, no wonder it is this guy.” And then, as is usually the case, I started finding all the songs sung by him. In this process, I ran into this gem, “Tajdaar e Haram”, originally sung by the Sabri Brothers of Pakistan. Atif Aslam sang this for a performance for Coke Studio (Pakistan).

Here is the video of the Coke Studio performance:

Here is the original by the Sabri Brothers:

Saturday, March 3, 2018

How much into the future does the work that you are doing now impact?

I recently read an article (unfortunately I don’t remember where and so, don’t have the link) where this question was asked. Leaders of organisations should typically be doing work that impacts a few years into the future. This would include strategic planning for the direction in which the company is headed, putting processes in place, doing things to protect the culture of the company and so on. Of course, there would times when there would be pressing tasks that don’t impact that far out. But, leaders should spend a large amount of time doing things which impact the company way into the future.

If the leaders of a company spend a majority of their time on dealing with day to day issues then there’s something wrong and that needs to be corrected. A team should be put in place that takes care of these things and the leaders must mainly work on process, direction and culture. They should ask  this question time and again to remind themselves of the significance of their role. It is easy to get caught up in the daily grind and flood of emails that usually hit their inboxes on a regular basis. Time should be carved out and put on the calendar to ensure that this does not come in the way of the long term impact their work must have.

Friday, March 2, 2018

The Lighter Side of Dialysis by Peter Quaife

Peter Quaife was the founding member of the band, The Kinks. He was on dialysis from 1998 to 2010. When Quaife went for his dialysis sessions, as a way to kill time during the four hour sessions, he started sketching cartoons about dialysis. All these cartoons were collected and published as a book called The Lighter Side of Dialysis.

What a great way to pass time on dialysis. The cartoons have been made available as a free download some time back on this website which is of the Pete Quaife Foundation.

My favourite cartoon is this one: