Tuesday, October 11, 2016

The truth behind the 13 year old Jain girl's fasting accident

Recently, a thirteen year old Jain girl based out of Hyderabad, Aradhna Samdariya, died after a 68 day fast. The press covered this incident quite extensively. It also made it to some national news bulletins. Many people called it a 'cold-blooded murder' by the parents for which they should be 'locked up in prison'.

First, some facts. Jainism encourages fasting. But it clearly articulates that all religious activities including fasting, donating money etc. should all be done 'yatha shakti', as per each individual's capabilities. It never recommends to go beyond your capabilities. Yes, it also encourages you not to fall short of what you're capable of. Fair, in my view.

There is absolutely no evidence of the parents forcing the child to fast beyond her wish. This is mere speculation by a section of the media. The parents probably encouraged her. There is a very important difference between 'force' and 'encourage'. They did not deter her from fasting. They did not stop her from fasting. They encouraged her to fast. If the girl wanted to stop, she definitely could have stopped. So, to charge the parents with 'culpable homicide' is totally unfair. The parents have committed a mistake, a very serious mistake. They did not cause the death of their child. There is absolutely no ground to proceed legally against them.

Latha Jain, in an interview with NDTV stated that this was cold blooded murder. I would like to ask her whether she understands what cold-blooded murder even means. Please don't sensationalise the loss of a child to get your two minutes of fame on television! Some people have called for the society to not provide any legal help to the parents. Just to put things in context, I would like to remind them that even Ajmal Kasab was provided legal aid! Are the parents worse than him???

There have been wild, baseless allegations about the father of the girl having had losses in his jewellery business and that they were advised by some sadhu in Chennai to get their girl to fast for 68 days! From where has this come? What evidence does anyone have to prove this? How low can the media go?

There have been many discussions about allowing children to fast or not. Jain fasts are very rigorous. The upvaas consists of no food and only water. Water is also to be consumed only up to sunset. The same girl did an 8 day fast and a 34 day fast in the preceding two years. She was completely fine. Nothing happened to her. There are hundreds of children around the country who fast for various number of days during the 'paryushan' every year. Nothing happens to any of them. Where were the child rights activists when these fasts went off well? Some people argue that 68 is too high a number for a thirteen year old. Accepted. What is the right number? 1, 3, 8, 16, 30? Who is to decide? Each individual is different! There can be no fixed rules for all!

Any individual should fast only up to a point where he or she is able to independently do his or her day to day activities. Beyond this is not advisable.

What happened with Aradhna Samdariya was a very sad, horrible mistake. A mistake. Nothing more. Nothing less. She should not have been allowed to go to a point where she was unable to stand, sit or move about independently. Let us not ostracize the parents. They have lost their daughter. They must already be feeling so miserable. To proceed legally against them is a travesty of the law.

Sunday, October 2, 2016

Look for joy in the little things in life

Many articles I have read in recent times have suggested that happiness is usually found in experiences rather than products. They suggested that the initial thrill on buying an expensive new thing such as a fancy, new car, a new phone or a new home usually fades away quite quickly. The joy of experiencing something like a holiday at a new place, doing something adventurous like rafting or zip-lining gives you happiness that is felt for a long, long time and gives you memories that can last a lifetime.

I find this to be very true. When I buy a new iPhone, within a few weeks or at best a few months, the initial excitement is dead and gone. And I actually feel bad when the new iPhone is announced because it is usually so expensive that I cannot afford to buy one so soon after I've just spent quite a bomb on another one!

On the other hand, I can never forget the trips I've had. I relive the joy whenever I think about them, talk about them with people I've been with. Take the 2012 Alaskan cruise for example. Just the other day, when Dinesh wished me on my birthday, we reminisced about the fantastic time we had. This, after four years had already passed! I often revisit the videos of the Niagara Falls and even much simpler places, closer to home like the natural water slide at Chepa Rai! I still feel the thrill of these places.

I firmly believe the best things in life are the simplest. I savour every sip of my morning Darjeeling black tea, love my Sunday morning Idli jaunt and relish my morning swim. When you think about these things, you realise that you don't need too much money to experience true happiness. We often get into this endless cycle of trying to make money because we believe that in money lies the secret to happiness. It is true that we need money to take care of the basics. But beyond a point, money cannot make us happy. It is how we look at life and how we try to find those moments of true happiness and genuine joy that eventually dictate how happy we actually are.

Sunday, September 25, 2016

Two little Elevator button rules to use in life

I think it's high time someone published the rules for using elevator buttons, especially the ones outside (that call for an elevator). I am sick and tired of the way these buttons are misused.

So here goes:

Rule #1:

The two buttons available to call an elevator have an up arrow and a down arrow. These are meant to indicate whether you want to go up or down, not whether the elevator must come up or down. For example, if you're on Floor 3 and you want to go to Floor 7, you need to press the Up arrow button. Many people see that the elevator is on Floor 5 and press the Down arrow button. When I ask them why they pressed the Down arrow button when they wanted to go up, they say I want the elevator to come down. Well, the elevator will figure out where it has to go but you please just let it know where you want to go because the elevator has no way to figure that out.

Corollary to Rule #1:

Never press both Up and Down arrows. It does not cause the elevator to come to your floor quicker. It simply causes more delays later in the process! Let us say the elevator is on Level 7. You are on Level 0. You want to go to Level 5. The Up arrow is already pressed. You come and press both the Up and Down buttons. The elevator was planning to go to Floor -2. Since you pressed the Down button, it will stop at Level 0. No one will get in or out. But you will have to wait until the door opens, waits a few seconds and then closes. You could have saved all that time!

Rule #2: 

If one of the arrows (Up or Down) is already lit up, pressing it again 2-3 times in quick succession does not make the elevator come to your floor quicker.

I see people who are in a rush. They will come to the elevator, see that one of the buttons is already pressed. But they're apparently in a hurry and so they will press the button again muttering some profanities under their breath. No, it does not help!

There you go! Two simple rules to ride elevators efficiently and make this world a much better place!

Sunday, August 21, 2016

In how many different directions will we pull our government?

So, Sakshi Mallik and P V Sindhu win medals at the Olympics. Countless hours are spent in television debates on how India has failed her sportspersons. People talk about how they have won medals despite the system rather than because of it. All very true.

All this will be forgotten in a few weeks and people will be talking about how the government failed some other section of the population. And then another. And then another.

People like me who've been affected by health issues and who are in the healthcare industry and see people dying due to lack of access to decent healthcare would always argue that the government's focus should be on providing good healthcare. Even among healthcare enthusiasts, there would be differences on whether the focus should be on primary healthcare, preventive healthcare or chronic diseases.

Then you would have people who would argue that education should be where the government should focus. Some people would contest that poverty alleviation should be the focus. There would be some who would say that the government should concentrate on the public distribution system and ensure that no one is hungry.

In a severely resource-constrained country like India, sports, honestly will never be on the list of priorities. When we do not have the basics like food, education and healthcare taken care of, we cannot expect the government to focus on sports and Olympic medals.

While each section of the population that demands that the government focus on one particular aspect is justified in doing so, it is a fine balancing act that any government must perform in order to ensure that it is seen to be spending every rupee in a meaningful manner. At the end of the day, this will mean only incremental progress on many aspects rather than completely eliminating the most basic problems first. 

Monday, August 15, 2016

An accident of geography?

I was in the middle of a meeting. My cell phone rang. The number was unknown. I muted the phone. I called back after the meeting was done. It was an unknown male voice. He introduced himself as Abhijit Chatterjee*. He spoke in Hindi with a heavy Bengali accent. I found it difficult to follow what he was saying. But I could figure that he was talking about his daughter, Ananya Chatterjee* who was diagnosed with aHUS. She was currently on Peritoneal Dialysis.

I get roughly one call a month these days. After setting up the Atypical HUS India Foundation, putting up a website and a Facebook and Twitter account and trying to publicise the news that trickles in from time to time, people have been contacting me. My response is usually very standard. After all, nothing much changes in the grim, dark world of aHUS in India. No Eculizumab. No other good options for most of the mutations.

Over the next several weeks, I got introduced to Abhijit Chatterjee through a series of different people. The Atypical HUS Foundation in the US, aHUS UK, other aHUS family members from different parts of the globe. The man was desperately trying every source of information and help he could find on the internet. He contacted every person or organisation he found linked to aHUS. Unfortunately for Abhijit Chatterjee, all his efforts finally ended at my email Inbox or my phone.

My response was standard and offered little hope. “Eculizumab is the only good treatment for this disease. It is not available in India. Until it becomes available (this may take a few years more) or another drug becomes available, we need to do maintenance treatment like plasmapheresis, plasma infusions, dialysis etc.” I introduced him to some leading hospitals and clinicians so that he could talk to them first hand and see what other options might be available. He probably got similar answers from them as well.

On one call, Chatterjee talked about his daughter. I could sense the fondness he had for her, for little Ananya.

“She is so cute and innocent. She has no idea what is wrong with her. She has such a sweet face. I am feeling very helpless. I have spent lakhs of rupees on her treatment. I have borrowed money from everyone I know. I am not sure how I will repay them. I just want her to become well.”

As my eyes swelled, I could feel my gut wrench. What have we done to deserve this? Wouldn’t it have been better to have a disease that had no cure? It was so frustrating to know that there is a cure, there is a drug that can cure us completely. It’s just that we can’t afford it. It’s just that we were born in a country that did not have access to it.

Then, one day, there was suddenly a ray of hope. It came in the form of an email from a company that was working on a new complement inhibitor. They wanted to explore the possibility of conducting a clinical trial in India. As eculizumab was already available in countries like the US and the EU, it made perfect sense for them to do a trial in a country like India where there would be patients without any options and who might be perfect candidates for a trial.

I promised all help. Their Asia representatives were asked to contact me. I put them in touch with all the clinicians I knew who could have such patients. My hopes however came crashing down when I learnt that the company was currently enrolling only adult incident patients. That is adult patients who had just been diagnosed and had not proceeded to kidney failure.

I wrote to the company asking them to include paediatric patients as well as they would be able to enrol many more patients that way. The company responded that it would get back to me after discussing with the management. I haven’t heard back from them yet.

About a month back, I got a call from Abhijit Chatterjee again. They had sent Ananya’s blood samples for genetic testing. The reports showed a Complement Factor I Mutation. She would need Eculizumab for a transplant, I thought to myself. The doctors were recommending a kidney transplant. I asked him what the plan was in case of recurrence. He said he did not know. I asked him to discuss with the doctor that since they did not have eculizumab, what was the point in undergoing a kidney transplant especially if she had a Factor I mutation?

He said he would discuss with the doctor and get back to me. 

A couple of days back, Chatterjee called again. I thought he must be calling to update me about the transplant plan. However, I could immediately sense from his voice that this was something else. He sounded completely distraught. Little Ananya was admitted in the ICU at a very reputed hospital in South India. She had worsening blood counts. Her Platelet Count was dangerously low. She was put on a ventilator. They were monitoring very closely. I did not say much.

That evening I could not stop thinking about the little girl. 

The next afternoon, I got a call from Chatterjee. I was honestly scared to take the call. I feared the worst. I answered the phone after an excruciatingly long wait. Chatterjee broke down. “It’s all over. Last night, Ananya had a cardiac arrest, multiple organ failure and then she died.” I hung up. My heart sank. My throat choked. My mind went blank. Little Ananya was no more.

I muttered a curse to the skies. I asked myself what was wrong with this world? Of what good was all the progress mankind has made when the life of a little girl could not be saved merely due to an accident of geography? Why do people in some countries have access to the drug while others do not? 

Alexion Pharmaceuticals, the company that manufactures the drug has priced it so high that very few people in the world can afford it. Forbes magazine has declared their drug to be the most expensive drug in the world today. They have probably spent millions of dollars on the research for the drug. They have probably spent a lot of time, money and effort in navigating the various patent laws and making their drug available to people. Given that the number of patients in the world is so small, are they not justified in pricing their drug high enough to be able to make profits?

I honestly don’t know the answer to that question. All I know is that what happened to Ananya is just wrong. I don’t know what can be done to change the situation for aHUS patients in India and many other countries in the world where the drug is not available. Something needs to change. How many more such lives are going to be lost fighting this disease? How many more Ananyas are going to die before this situation is remedied? Someone needs to find a way out.

(* Names have been changed to protect identity.)

Sunday, July 31, 2016

Indoctrination of impressionable minds: what is the real cause?

Brainwashing of young minds that are vulnerable happens in many religions. The clergy of many religions commonly teach children and the youth, things that may or may not be in line with the original teachings of the religion. These concepts however lead to the students developing a warped world-view which causes a lot of discord in their life and in several cases, in the lives of others.

Islam has been accused of this a lot in recent times but this is prevalent, with less devastating consequences in other religions as well. Christianity teaches some very intolerant stuff (only believers  in Jesus Christ will be granted eternal life) to its adherents. Some Hindu sects also teach their children that Christians and Muslims are their enemies and that India belongs to the Hindus and that other followers of other religions are outsiders and should stay "within their limits". This kind of indoctrination of young, impressionable minds is very effective in ensuring a lifetime of hate and resentment towards others. 

I started thinking a lot about this due to three things that happened coincidentally at the same time. I watched the Pakistani film "Khuda ke Liye" which depicts how a young man from Lahore is brainwashed by a Maulana who quotes verses of the Quran out of context and makes him do some very despicable things. The film climax shows a court scene where another Maulana (played very well by Naseeruddin Shah) demolishes each of the fanatic's arguments with references from the Quran. The film goes to show how people misuse religious scriptures which are written in languages that are understood today by a few to disastrous consequences.

Around the same time, I saw a television debate involving the actor Irfan Khan about his comments that Islam has become very ritualistic and people are not following the real tenets of the religion which call for inner change and introspection. I find this is true for nearly every religion! Most religions today have become extremely ritualistic and emphasize external activities rather inner changes. 

Islam has indeed come under a lot of scrutiny, as I said before, due to the rather dramatic and serious effects of its indoctrination in the form of horrendous and innumerable terror strikes that have killed many. However, as is evident, this indoctrination is going on, in some form or the other in almost all religions.

I, rather surprisingly, realised recently that I myself have been a victim of this indoctrination by a Jain monk. Suffice it to state that this has resulted in me developing a very deep-seated view about certain things which has affected my thinking about certain aspects of my life. My recent foray into meditation has helped me realise this and has also helped me in cleaning up my thinking. It is obviously not easy. It will take a lot of effort to dust away the many layers of negative thinking that have gathered over the years.

This brings me to the question I raised in the title of this post. What is the real cause of this kind of indoctrination? In my view, there could be two reasons: 
  • the clergy genuinely believe their religion calls them to do this
  • the clergy do this to achieve some selfish goals
Most religious texts are written in old languages that are not popular in today's age. They are also often written in the form of poetry with a generous use of metaphors and allegories. Typically, these can easily be misinterpreted by the reader. So, some clergymen can mistakenly read some parts of the texts in a way that inspires them to indoctrinate the youth of their religion to do things that were never intended by the author of the texts.

Another possibility is that the clergymen actually understand that the original intent was never to cause harm to anyone but despite this, quote from the scriptures in a manner that justifies the acts, mostly out of context and to suit their own deceitful agendas.

Whatever the cause, it is important for saner minds to prevail. Let Islam not be the only religion that is reviled. Though it is possibly causing the most harm, other religious men and women are also guilty of the same crime, albeit, to a lesser extent.

Wednesday, July 27, 2016

Just where are we headed?

These days, every morning, when I wake up and turn Wifi on, I dread the alerts that my NDTV app has waiting for me. It is just one thing after another. If you look at the way violence has increased in the past year or so, it is quite alarming.

There were multiple attacks in France, so many in the US, one in Australia, in Bangladesh, so many in Afghanistan, India and Pakistan. Many countries in the world are getting added to the list. Though most of these are terrorist attacks, there are some which are being carried out by disgruntled individuals as well.

Why is there this spurt in violence suddenly in the world? Why is there so much disturbance suddenly in the world?

We also have political upheavals in many parts of the world - the threat of the breaking up of the EU, the threat of the most powerful country in the world being headed by a capricious, bombastic man, coups and failed coups in many countries.

In my science class in high school, I learnt that the world always moves in a direction of increasing entropy. This definitely seems true in the current circumstances.