Thursday, August 20, 2015

Don't blame us for being 'non-compliant' - it is you who have failed us

In a brilliant blog post on Home Dialysis Central, Dori Schatell of the Medical Education Institute says:

"At the NKF Spring Clinicals meeting in March, a comment I was told that someone made at the microphone during a session still bothers me months later. The gist of it was: “Why does all of the responsibility for improving outcomes fall on clinicians—where is the patient in all of this?” [Good point, but it goes on…] “I lose money if my patients don’t reach the quality targets. Why can’t we fine the patients if they don’t do their part?—and audience members applauded!"

This attitude among some nephrologists (not all are like this, of course) is extremely bothersome. No one chooses to be on dialysis. It is something thrust upon them. How can anyone have such a callous attitude towards them? 

The entire healthcare system has failed us dialysis patients. Look at the amount of innovation that has happened in cardiology and compare that with the innovation that has happened in dialysis. Only one word can describe this: pathetic.

The situation in India in terms of problems that patients have is far worse. Add all the problems that patients in developed countries have and add the fact that you need to pay out-of-pocket for everything and the cocktail becomes that much more heady. When there are better options available in the world today, we are still expected to make do with something that is hardly optimal.

And yet, we are called non-compliant!

I am not finding fault with nephrologists. The problem is the system. Healthcare in India is a different beast. The humungous population, the lack of resources, non-protocolised delivery and the very low patient to nephrologist ratio all contribute in some measure to the problem.

All I am saying is that healthcare providers need to be a little more sympathetic to these problems. Treat us with a little more dignity, a little more compassion. That should be doable, right?

Monday, August 17, 2015

A possible solution to end Parliament disruptions


The recent Parliament session was a complete wash-out. Disruptions by the opposition, led by the Congress prevented important bills from being passed. Apart from the huge loss of money incurred by running the houses of Parliament without any business being transacted, there has been an incalculable loss in terms of opportunity by not passing important bills.

Who is really to blame?

The supporters of the BJP lay the blame squarely on the shoulders of the Gandhis who have such a pathological hate for Prime Minister Narendra Modi that they are loath to see him become successful in anything. The Congress, on the other hand says that they are not doing anything the BJP did not do when it was in the opposition. This is not entirely devoid of truth. Yes, of course, if they did something wrong, it does not mean you do it as well!

This cycle of disrupting Parliament needs a permanent solution.

Consider what Parliamentarians earn. Apart from a monthly salary and allowances of Rs. 1.3 lakh per month, they get a daily allowance of Rs. 2,000 to attend Parliament. All this is tax-free. Apart from this, "MPs can travel anywhere in the country by rail, first class, and get 34 free air tickets for themselves or a companion a year. Spouses of MPs can  travel free by air from their residence to New Delhi eight times a year when Parliament  is in session and unlimited number of times by rail."

What needs to be implemented strictly is a pro-rata system. Pay only for the work done. For example, if the official number of hours Parliament was supposed to function was x, of which due to various disruptions, it worked only for y, pay only y/x of all the above mentioned amounts. The important thing is that all the allowances, air tickets, household expenses etc. should all be paid pro-rata. Just doing this for the salary would hardly achieve anything.

As it is, most MPs are wealthy enough for this to make much of a difference. So, we need to be very stringent about these conditions.

There has been some talk about such a proposal, to which there already has been some opposition.

We need to implement this quickly. The country has already lost a lot of money due to our inconsiderate and egoistic leaders.

Wednesday, August 5, 2015

Announcing India's first Atypical HUS Registry!



Atypical Hemolytic Uremic Syndrome is an ultra-rare disease affecting a small number of patients world-wide. This devastating disease affects children and adults and without proper management and treatment by experts can lead to kidney failure and in some cases, even death.

Very little data exists about this disease in India. No published data about the incidence and prevalence of this disease is available. It is very important for some database to be available because without this, it is difficult to make a case for pharmaceutical companies, healthcare providers and importantly, the government to take any decisions regarding this disease.

This is my primary disease, the disease that caused my kidneys to fail. I founded The Atypical HUS India Foundation a few months back which is now a registered Trust. Through this foundation, I have started a registry for Atypical HUS Indian patients.

I am requesting patients and family members to please spare a few minutes and fill out the registry form so that we can make a small beginning in collecting some data about this disease in India.

The link to the registry form is here.

Please share this with anyone you know who is afflicted with this disease or has a family member or friend who has this disease and request them to fill out the form. No personal data would be shared with anyone. The data will only be used for analysis. Thanks!