Monday, August 25, 2014

I did not take up the Ice Bucket Challenge. No, I am not heartless!

A friend, who sat a row behind me in the final two years of school back in that wonderfully magical town in the old country, challenged me in Facebook and gave me twenty-four hours to follow up with my own ice-bucket video.

The deadline has passed.

In case anybody else has plans to challenge me, I will make it easier for you: I will not take it up.

The reason is simple. I am far from convinced that ALS ranks way high among the gazillion problems that humans experience on this planet and, therefore, it is more important for me to spend whatever that I can on issues that are of much higher priority.

Let us begin at step 1, which is to find out how many people in the US suffer from ALS.  Why not check in with the philanthropic organization where the ice-bucket-challenge money will end up--the ALS Association, which "is the only national non-profit organization fighting Lou Gehrig’s Disease on every front":
  • It is estimated that ALS is responsible for nearly two deaths per hundred thousand population annually.
  • Approximately 5,600 people in the U.S. are diagnosed with ALS each year. The incidence of ALS is two per 100,000 people, and it is estimated that as many as 30,000 Americans may have the disease at any given time.
Right this very minute, about 30,000 Americans have this awful disease.  That is 30,000 more than what we would prefer, certainly.  But then we also have to ask ourselves a question, however uncomfortable that might be: why is raising funds and awareness for the 30,000 more urgent than the money and awareness for any number of other diseases, or conflicts, or other ways in which humans around the world suffer and die?

Consider, for instance, malaria.  It is a disease that is not only curable but even preventable.
An estimated 207 million people suffered from the disease in 2012, and about 627,000 died. About 90 percent of the deaths were in Sub-Saharan Africa, and 77 percent were among children under age 5.
More than 200 million suffered from it, and kids less than five years old accounted for nearly half-a-million deaths.

Or consider Ebola, which in this latest iteration has the world quite alarmed.  We have known about Ebola for some time now, but have not really committed resources to developing drugs to cure patients and methods to eradicate it.  Why?
When pharmaceutical companies are deciding where to direct their R. & D. money, they naturally assess the potential market for a drug candidate. That means that they have an incentive to target diseases that affect wealthier people (above all, people in the developed world), who can afford to pay a lot. They have an incentive to make drugs that many people will take. And they have an incentive to make drugs that people will take regularly for a long time—drugs like statins.
This system does a reasonable job of getting Westerners the drugs they want (albeit often at high prices). But it also leads to enormous underinvestment in certain kinds of diseases and certain categories of drugs. Diseases that mostly affect poor people in poor countries aren’t a research priority, because it’s unlikely that those markets will ever provide a decent return. So diseases like malaria and tuberculosis, which together kill two million people a year, have received less attention from pharmaceutical companies than high cholesterol. Then, there’s what the World Health Organization calls “neglected tropical diseases,” such as Chagas disease and dengue; they affect more than a billion people and kill as many as half a million a year. One study found that of the more than fifteen hundred drugs that came to market between 1975 and 2004 just ten were targeted at these maladies. And when a disease’s victims are both poor and not very numerous that’s a double whammy. On both scores, a drug for Ebola looks like a bad investment: so far, the disease has appeared only in poor countries and has affected a relatively small number of people.
How would I justify contributing to ALS as a higher priority compared to a contribution to fight any one of those neglected diseases that affect millions and kills millions?

Felix Salmon writes that the ALS Ice Bucket Challenge is a bad idea:
William MacAskill has an informed estimate that a good 50 percent of the money being given to ALS is ultimately coming out of the pockets of other charities. So it’s reasonable to ask: Are we better off in a world where the ALS Association has an extra $100 million and other charities have roughly $50 million less?
Salmon adds:
there are thousands of charitable organizations out there that could really use the money going to ALS—could use it to make the world a better place today. Some are medicine-based, treating the sick around the world; others might be in areas such as education, or clean water, or animal rescue, or the arts, or simply just giving money to poor people. In virtually all these cases, there’s an obvious positive effect to any donation. Not all philanthropic activity should be obvious, of course, or require immediate positive effects. But the less good you’re going to do in the short term, the more good you should expect to achieve in the long term. And I don’t think the ALS Association quite gets there.
Asking such tough questions is never the way to win friends.  But then a long time ago I decided that my career would be about engaging in difficult questions, even if it means I will be friendless and waiting for that cup of hemlock!

I do wish that the ill--whether the disease is ALS, or malaria, or depression, or ...--don't have to suffer at all, and that science and technology and philanthropy will make this world a much better place for all of us. I hope I am doing my part towards making the world a better place, even when I decline the Ice Bucket Challenge.


Shachi said...

My favorite MJ song!

I refuse to participate in this show-off challenge business too.

Why not spend a day with or do something for someone less fortunate than you instead?

Donating money is so fancy, but giving your time, your empathy, your listening ear - yes, people run away!!!!

Ramesh said...

Fully agree. But then, these are difficult questions that most would rather not think about.

Sriram Khé said...

Yes, spending time with people and sharing is important ... but, I don't mean to suggest that donating itself is a waste. At the end of the day, without money we can't find/fund medical treatment, for instance. My point was about how we prioritize the needs and decide on where to spend the dollars ...
Difficult questions, yes. If we spent more time thinking through the difficult questions that are all around us, I bet the world will become a fantastic place for all of us ...

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