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!