Showing posts with label rare diseases. Show all posts
Showing posts with label rare diseases. Show all posts

Saturday, September 6, 2014

The Ice Bucket Challenge: what went wrong?




Why the Ice Bucket Challenge is bad for you
The ALS campaign may be a great way to raise money – but it is a horrible reason to donate it


August 24, 2014




(AP Photo)

The ALS Ice Bucket Challenge is bad for you.

I don’t mean you will catch a cold (you won’t), or look like a craven sheep (you will). I mean that when you are inspired by a viral fad to donate your limited dollars to a charitable cause, you ignore the diseases that genuinely threaten.

The marketing gimmick is very clever. It is short, immediately understandable, and like the most popular forms of slacktivism, it is easy to do, entertaining to watch, and narcissistically self-promoting. Every screen on our desks, on our walls, and in our hands is filled with celebrities, neighbours, porn stars, and politicians showing off their earnest compassion and occasional humour. The ice bucket’s ubiquity rivals other famous charitable stunts like Movember, Livestrong, or the infamous Kony 2012.

As a result, the ALS Association has received more than $70 million so far, compared to only $2.5 million during last year’s campaign. It is a great way to raise money — but it is a horrible reason to donate it.




We, as individuals and as a society, have finite resources to donate to medical research and other worthy causes. When we decide where to spend our charitable dollars, we need to consider three factors.

1. Where is the greatest need?
2. Where will my dollars have the greatest influence?
3. What is the most urgent problem?

The ALS challenge fails all three of these tests.

First, ALS research is not an especially great need in public health. It is classified as a rare disease and, thankfully, only about 600 people die from it every year in Canada. That sounds like a lot, but that is not even close to the top 20 most fatal diseases according to StatsCan (the top three being cancer, at 72,000 deaths per year; heart disease, at 47,000; and cerebrovascular disease, 13,000).




Second, it is already extremely well funded. As this chart from CDC data shows, last year ALS killed 6,849 people in the U.S., and attracted $23 million for research (a ratio of $3,382 per death). Heart disease, by contrast, killed 596,577 but only raised $54 million (a paltry sum of $90 per death). If you want your donation to make the biggest difference, fund the diseases that need the most money.

Finally, ALS research is not an urgent need. If you want to help where time is of the essence, then look to Syria (greatest international refugee crisis in a generation), Ebola(now a full blown global health emergency), or the Central Africa Republic (quietly bleeding to death unnoticed by the world).

We aren’t rational, though. Typically, you will spend more time considering where to order a pizza and what to put on it, than you will deciding where to donate your charitable dollars. As a result, the real threats, the diseases that are far more likely to kill you and your loved ones are ignored. This is why the ALS Ice Bucket Challenge is bad for you, and me, and all of us. Instead of supporting what is most needed, we support what is most amusing.

But you can change this. Print the simple reminder below, fold it up, put it in your wallet. And the next time you reach for your credit card number, pause and actually think.

Good reasons to donate:

1. Need
2. Influence
3. Urgency

Bad reasons to donate:

1. Ice Buckets
2. Wristbands
3. Mustaches

Scott Gilmore is a former diplomat and the founder of Building Markets

Readers reply: Follow this link to a selection of their feedback. 




My thoughts. I love this piece and wish I had had the chops to write and publish it. I simply couldn't put my feelings into words. I was not allowed to say anything to people about this, unless I wanted a shocked sideways glance ("Huh?", meaning "I can't believe what I'm hearing"), a headshake ("I knew you were pretty negative, but about THIS?"), or a sense people were embarrassed for me. What a party-pooper! Such a great cause! All that money! Hey, it's just water - what are you griping about? Some people hate everything.




As with breast cancer, donation is lopsided because of public perception and a bandwagon approach. The pink ribbon juggernaut has already taken much-needed dollars away from the number one killer of both men and women: HEART DISEASE. Do you hear of heart disease runs or tshirts or any of that? It's just not a sexy disease. ALS isn't either, so I am surprised that this even got started, and I don't know how it caught fire the way it did, but I am almost certain the roots are in celebrity. If you're famous, you're the lead goose in the flock. This includes brain-damaged idiots like Miley Cyrus and her goddamn ass-shaking and disgusting tongue.




What I'm trying to say is. . . oh never mind, it will never happen because too many people don't THINK. I know from being on Facebook that most people don't, would rather not, but the thing that scares me most is that they don't even know they aren't thinking. If they did, I doubt that they would care. Just jump on the bandwagon, because it's fun! Meantime, whatever funds you may have set aside for charity are spent for the year - but never mind, if it's making all these millions, if so much attention is being paid, ALS must be our most pressing health problem, right?

Excuse me. I'm going to go have a heart attack.



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