Sunday, April 17, 2016

National Dialysis Program: There is a tide in the affairs of men...

Dr. Vivek Jha, one of India's most respected nephrologist has written a blog in BMJ that talks about the newly announced National Dialysis Program. He makes some very important points:

  • "A countrywide programme to identify and treat earlier stages of kidney disease so that advanced disease can be prevented must be developed"
  • "A well designed national service should be a hybrid programme, with a pragmatic mix of HD and PD"
  • "Parallel support should be provided for transplant surgery and post-transplant immunosuppression."
  • "The ideal payment model should be based on a combination of process and outcome measures."
Some states in India already provide free dialysis to patients who are below the poverty line. However, these program lack a process by which quality can be measured and good quality rewarded. This gives no incentive for the dialysis service providers to give good quality which obviously, comes with a cost. Many providers skimp on basic things and this results in very poor outcomes with patients surviving for abysmally short period of time on dialysis.

If outcomes are measured, the mortality and morbidity of patients on dialysis utilising such schemes would reveal some shocking details. This is why it is very important to get this new program right. The Government must involve people like Dr. Jha and others to ensure that they get this right the first time. If the broad contours of the program are designed badly, it would be very difficult to course-correct later.

India is at a very important juncture when it comes to healthcare policy. There is a unique opportunity that may not present again. If the Government handles this well, we could have a scheme that could genuinely help the vast ESRD population. If the opportunity is squandered, we will have only ourselves to blame.

"There is a tide in the affairs of men, 
Which taken at the flood, leads on to fortune. 
Omitted, all the voyage of their life is bound in shallows and in miseries. 
On such a full sea are we now afloat. 
And we must take the current when it serves, or lose our ventures."

- William Shakespeare

Wednesday, April 13, 2016

When it comes to a fistula, don't abandon what can be fixed

The human body has four sites in the body where an AV Fistula can be made which are comfortable. When we've exhausted all these options, then other options can be explored but these are not comfortable for a patient to get dialysis. The initial four I talked about are in the two hands (two each). Then if and when you run out of these, options in other parts of the body such as the legs can be explored. I have even seen a picture of a woman having a fistula on her stomach.

When you have such limited options, it is important that the initial four sites be preserved as much as possible. In India, unfortunately, I see a lot of fistula sites being abandoned at the hint of the slightest problem. This is due to the lack of experienced and proficient vascular surgeons.

In developed countries, everything possible is usually done to repair a fistula that is giving problems. In India however, the trend is to abandon the site and create a new fistula. In the past, dialysis patients were not expected to live too long. So, the thinking probably was, that anyway by the time the patients would exhaust his fistula site options he or she may not be alive. However, these days, increasingly, survival rates are higher and you find a lot of patients living longer lives on dialysis.

This makes it all the more important for our mindsets to change.

I was sent a link by two people yesterday which prompted me to write this post. The article talks about saving a fistula that is giving problems rather than abandoning it. The article mentions this facility being available in Medanta Hospital in Gurgaon. I am sure other good vascular surgeons in other cities would also have similar expertise. It is important that such centres are set up and the overarching intent should be to preserve fistula sites wherever possible.

Wednesday, March 23, 2016

Dialysis patients let their hair down at Mumbai Kidney Foundation Annual Day

I was delighted when Dr. Umesh Khanna, one of the country's top nephrologists, Medical Advisory Board member of NephroPlus and Medical Director of NephroPlus Borivali centre called me a few weeks back and invited me for the Annual Day Event of Mumbai Kidney Foundation, which he founded almost a decade back.

Mumbai Kidney Foundation was started for the education, prevention and treatment of Chronic Kidney Disease. The Foundation also runs a number of Charitable Dialysis Centres in Mumbai in association with other Charitable Trusts. They have saved hundreds of lives over the years thanks to the unflinching commitment to the welfare of patients of Dr. Khanna and his dynamic Gastroenterologist-wife, Dr. Molina Khanna. They also organise a patient picnic every year in January.

This year's Annual Day event was held on the 20th of March at the Aspee Auditorium in Malad (West), Mumbai in association with Dhirajlal Talakchand Shah Charitable Trust.

The event was an excellent opportunity for dialysis patients to forget about their disease for a while and show the world the talents they possess. Ranging from songs to dances to a skit, the patients would keep you guessing whether they really were dialysis patients or were simply putting on an act. The cheer, exuberance and enthusiasm in display was so contagious that they had the entire auditorium on their feet clapping and dancing together with them.

Dr. Khanna especially was so full of energy; it was a treat to see him running around and organising the entire event flawlessly along with his equally committed team.

Here are a few pictures from the event:

Friday, March 4, 2016

Indian government finally wakes up to the ESRD epidemic

When the Union Budget mentions the words "dialysis" and "ESRD", it definitely means good news. Probably for the first time in the history of this country have these two words been mentioned in this important speech of the country's Finance Minister.

With India being the Diabetes Capital of the world, it should hardly come as a surprise that a large number of Indians are falling prey to the epidemic of kidney disease. Arun Jaitley, the Finance Minister said in his speech, "Almost 2.2 lakh new patients of end-stage renal diseases get added in India every year, resulting in an additional demand for 3.4 crore dialysis sessions". It is clear that the healthcare infrastructure in the country is nowhere near equipped to cater to a need of this magnitude.

The budget speech consisted of two important parts pertaining to dialysis:

1. The National Dialysis Program which aims to have a dialysis centre in each district using the Public-Private-Partnership (PPP) model

2. Duty waiver for certain parts of dialysis equipment

For a sector that has suffered neglect and additional burden, any first step is welcome - at least they have us on the radar! In actual terms, these are baby steps in the long path to providing succour to the thousands of dialysis patients in the country.

And here's why. Let's take the second one first. Duty waiver for certain parts of dialysis equipment. No dialysis machines are made in India. So, the duty waiver would apply only for when parts are to be replaced. How would this reduce costs for patients in a significant way?

The National Dialysis Program has the potential to become like the US Medicare ESRD program. Of course, there are 'miles to go before I sleep'. The first step of course, is to provide the necessary infrastructure in the hospitals in each district to be able to run a dialysis centre. This itself is a massive exercise. You need to have trained staff for this purpose. You need dialysis machines, water treatment plants, personnel to maintain this equipment. You need nephrologists to be able to prescribe and manage the patients. You need to also ensure that the centres are run at good quality standards. You need professionals to define the standards and ensure that they are followed in a continuous manner.

By no means is this going to be an easy exercise. Rome, of course wasn't built in a day. The National Dialysis Program is a fantastic thought. As of now, it remains just that - a thought. I suspect that the effort to take it to fruition would be more than that to build Rome!

That said, I wholeheartedly welcome this move. As I pointed out, at least they have us on the radar! That itself is huge. Step by step, with the help of ethical professionals who genuinely want to enable the Indian population to get access to quality dialysis services, the Government should make this scheme successful. It must keep in mind that the eventual goal should be to provide a scheme that not merely provides dialysis but provides better quality of lives for patients with ESRD in India. focus on quality and not quantity. Start with a pilot city. Then gradually expand it to cover a state, a region and then the entire country. We are with you!

Wednesday, March 2, 2016

aHUS Alliance launches 2016 aHUS Survey

The Atypical HUS Alliance, an umbrella organisation of aHUS Patient Organisations from across the world launched the 2016 aHUS Survey. This survey can be found here. The survey is a very important tool for patients' voices to be counted in the work that is being done in the field of aHUS.

Especially with a disease as rare as this (estimates put the number at between 2 and 3 per million population, which incidentally classifies this as an 'ultra-rare disease'), it is important that more data is collected and published. When patients in countries such as India have no access to the only available treatment for this disease, this kind of data would be very useful in making a case before the government to do something in the future for this population.

 The survey is going to be open until the end of March 2016 following which the results would be analysed and published. Country-wise data would also be published which would give unique insights to clinicians and researchers into country-specific features of the disease.

Please fill in the survey yourself, encourage others you know who are affected to do this as well. There is a Facebook badge which you can download after you've filled the survey!

Wednesday, February 24, 2016

A 75 year old Harvard study finally unravels the secret to happiness

Someone on my Facebook wall shared a link to a TED talk about a 75-year old Harvard study that tried to figure out what really was the key to happiness.

A 75-year study is first of all incredibly difficult to do. It requires multiple generations of researchers to be equally committed. Not only that, it also requires participants to co-operate with equal commitment over decades. Only an extra-ordinary effort can pull this off!

They studied over 700 participants. One group was students from Harvard while the other were some poor people from Boston. The group was followed up from the 1930s to recently and every two years, various questions were asked related to life-events, their way of thinking. Blood investigations, and brain scans were done. One of the participants eventually became President of the US! Who would've thunk?

The conclusion of this study was fairly simple.

But first, some background. A recent poll of millenials revealed that money and fame were the most important life-goals of almost all the people. They thought that money and fame would make them really happy. I think that would be true for most of us. What else could be the top priority? Obviously, more money would equal more happiness. Right?

Well, the study concluded that neither money nor fame turned out to be important in the end. The most important was - hold your breath - the strength and quality of the relationships people had - relationships with families and friends.

The study actually found that actual physiological and psychological well-being depended a lot on the quality of the relationships one had. People who had someone to count on to be there for them in their hour of need were less likely to be affected by dementia and other mental disorders. They had better cardiovascular outcomes as well.

The cellphone age has actually ruined us quite a bit. We have the entire world on our phone - including friends. I have dozens of people on my Facebook friends list whom I don't even know! I have not even said Hi to them after befriending them! What's the point in such meaningless relationships?

We need to take time to cultivate family relationships and friendships. We need to talk to them, not 'chat' with them. We need to meet them, not do a 'video chat'. We need to take this study seriously. A 75 year old study cannot be wrong. In the end money and fame really do not matter. This seems very logical to me when I think about it. Here is the actual TED talk:

Wednesday, February 17, 2016

On Jain Sadhus and Sadhvis: Why 'they are better than us' is not reason enough for respect

These days, many Jain sadhus and sadhvis have adopted technology and modern materialism like never before. The use of mobile phones, electricity, computers and shockingly, even bank accounts has become rampant. Under the guise of changing with the times, many of them have forgotten the five sacred vows they have taken.

The Jain laity has actively encouraged these practices. For them, things have become more convenient. They don't need to travel to where the sadhus are to hear the manglik. They simply call them up or have the manglik delivered by a Whatsapp audio message!

When these practices are questioned by people like me, who do not like this change, the answer given is, "How can we question this? They are at least better than us. They do a lot more than us."

I am sorry but I do not agree with this.

What we are conveniently forgetting is that these sadhus and sadhvis have taken the five mahavrats which strictly forbid the use of such things. Electricity and mobile phones violate the ahinsa mahavrat. Keeping bank accounts (even if the money is used only for religious purposes) violates the aparigraha mahavrat. While they may be doing much more than us, violating the mahavrats they have taken is inexcusable and they are no more deserving of much respect.

The primary reason the Jain clergy was respected so much was their unflinching commitment and adherence to the five mahavrats. Everything comes later. Their ability to speak well, write well and impress people all come after this. If the foundation of monkhood is not strong, the buildings built on top of this would collapse easily.

સૂક્ષ્મની તાકાત ગજબની હોય છે. કટ્ટર સંયમ પાલનની શક્તિ ગજબની હોય છે. તેના વગર સાધુ જે પણ કરે, તે બધુજ એકડા વગરના મીંડા બરાબર છે.