My frosty take on the viral #ICEBUCKETCHALLENGE: Rationale Vs Fun

I came across the videos of my friends on social networking sites pouring a bucket full of cold water on themselves all in the support for increasing awaremess and funding the efforts for finding a cure against a disease called Amyotrophic Lateral Sclerosis (ALS). ALS is a motor neuron disease for which therapy options are limited. It is a severe enfeebling disease, with survival for most being at the most 5 years from diagnosis. However, some people do manage to fight it even longer, like the famous british scientist Stephen Hawking, who incorporated ALS in 1963 and still continues to make his mark in this world. More details on ALS can be found here - http://www.alsa.org/about-als/what-is-als.html


Our choice to donate for a cause is usually dictated by a disease which has affected our loved ones rather than dianoetic calculations based on which a disease deserves more funding due to lack of investment or neglect by the pharma or govt sectors. Here is where I see an issue with my friends who are mostly asian in origin jumping on the #icebucketchallenge trend wagon with best of intentions and generosity.

Incidence of ALS in US, where the whole challenge initiated, is so low that  it comes under a rare disorder (5 in 100,000 people). That to some is the very reason why crowdfunding needs to be initiated, as most  grant bodies ignore to provide funding for these rare disorders. However, in countries like India, Thailand and Australia the incidence further drops. There are currently less than 2000 people diagnosed with ALS in Australia (this does not include the family members who are equally affected) whereas in India and Thailand the incidence maybe even lower as exact estimates are even not available in these countries. 

Besides, in US the more prevalent diseases like cancer, cardiovascular disorders etc. are well funded . In countries like India and Thailand, chronic infections like TB, HIV,Cancer, etc… remain unfunded and untreated.  Therefore, maybe we need to think a little before giving. Donating money to research foundations of developing nations, rather than developed nations, would affect the lives of hundreads of more people. More importantly, donating for a cause more relevant to the immediate society we live in , like for e.g. Sanitation, Diabetes, TB, HIV in countries like India and Thailand would  be more impactful.

Finally, I have no hesitation in admitting that this effort has done a lot of good for ALS ( both in terms of awareness and funding) and also admire the generosity of people donating towards this noble cause. But in my opinion, one has to be a bit more prudent in selecting their own cause to ensure their hard earned wealth is going towards upliftment of the society they live in rather than jumping the trend wagon and following blindly what is trending in US,  the news or amongst friends and celebrities. We as citizens of developing nations like India and Thailand can do much better with the selection of the causes we decide to support.

On the lighter note, performing the #icebucketchallenge in Oz, where the new world record for the challenge is being set, is much more challenging as it is still winter here.

Disclosure : The opinion expressed here is just an opinion of the blogger who is a cancer reseacher down under and an Indian citizen who has lots of lovely and large-hearted Thai friends.