Rahul Venkit

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ALS: Breaking the ice to talk perspective and public health

27/8/2014

9 Comments

 
PictureMy pail will only contain a donation. (Photo credit: Jilkesh Tanksson)
It finally happened.

This morning, I was tagged in a Facebook post
nominating me for the ALS ice bucket challenge. 

But my pail will only contain a donation. And not for ALS.


Instead of dowsing myself with ice water and paying it forward, I'm going to take this opportunity to put ALS and the scale of the problem into perspective.

If I'm really lucky, I'll refocus your attention on the bigger picture of public health problems and encourage you to ruminate on global health priorities being distorted by popular media campaigns.

ALL HAIL THE ALS CAMPAIGN

First things first, I kowtow to the communications team behind the ice bucket challenge. They've achieved overnight rock star status by pulling off nothing short of a modern-day, social media-powered miracle (barring relatively few stray incidents of accidents and even one death due to people taking the ice bucket challenge).


Particularly commendable about this awareness and donation drive is the sustained attention it has drawn to a previously little-known condition. The genius of its design is using peer pressure to get wave after wave of people to engage with the campaign at all levels (first celebrities, then regular folk). The result: a snowballing movement that permanently features on our news feeds. One couldn't possibly have done better, especially on a limited budget. 

The fundraising figures speak for themselves. 

Latest reports show the ice bucket challenge has raised an amazing 88.5 million U.S. dollars within a month with donations from more than 1.9 million new donors.


"Just one week ago, donations totalled 22.6 million U.S. dollars. In just seven days, donations have sky-rocketed by an average of 9 million U.S. dollars per day," this ALS press release says.

In comparison, in the same period last year (July 29 to Aug 26), they raised 2.6 million U.S. dollars. 

Never before has so much money been raised and public interest sparked so quickly for such a rare condition. Communication teams around the world will now be scratching their heads, wondering how to emulate their success.

Neither breast cancer's FB status campaign (remember "on the table, on the counter"?) nor the more recent no make-up selfies for cancer awareness seemed to have made such an impact. 
(As an aside, many in Britain might never have heard of the acronym ALS before because Amyotrophic Lateral Sclerosis is better known as Motor Neuron Disease there).

FRINGE CONDITION, MASSIVE AWARENESS

The ALS Association estimates 30,000 people in the United States have ALS at any given time or two per 100,000 people.

Compare that to another non-contagious disease -- diabetes. According to the International Diabetes Federation's 2013 Atlas, 24.4 million people in the United States have diabetes, or one in every 10 people. How's that for perspective?

Given increasingly sedentary lifestyles, worsening diets and the ongoing economic lull, that figure will almost certainly jump to 29.7 million in one generation. And don't get me started on diabetes in China, India and the Middle East; or its effects on local communities and the economy. 

Still, unless you are or a loved one is affected, I'm willing to bet more people today know of the ALS ice bucket challenge than they do World Diabetes Day. Or that the blue circle is the international symbol of diabetes (like HIV/Aids has the red ribbon).


It's certainly not a competition, but if you were wondering what the world's number one killer is, that dubious honour goes to non-communicable diseases (NCDs) such as diabetes, cancer, heart and lung conditions. Together, they cause 60 percent -- or 35 million -- of global deaths annually, many of which are preventable with early intervention and the right resources. 

But how many of you have heard of the NCD Alliance? Or their movement to include NCDs in the successor to the Millennium Development Goals post-2015? 

A LEVEL PLAYING FIELD

Of course, none of this lack of awareness of the big picture is the ALS Association's doing. All they can be considered guilty of is devising an outrageously successful campaign. 


While some argue that giving money to disease-specific charities is a bad idea -- like this article in the Slate -- I feel that's a personal choice. A bigger point is missed in the bargain.

If anything, the ALS Association and every one who participated in the ice bucket challenge should be lauded for breeding hope. They're proof that with a savvy campaign and lots of luck (and celebrities?), any worthy cause can inspire mass public activism, irrespective of the scale of the problem. 

This is heartening. After all, all diseases -- well-known or rare -- are horrible; and cause immeasurable suffering to those affected and their loved ones. 

So whether you're campaigning for lesser-known conditions such as Crohn's disease or relatively more mainstream ones such as HIV/Aids, social media and smart campaigning strategies have levelled the playing field.

CAN WE ALL JUST GET ALONG? 

Ideally, all medical conditions -- big or small -- should be funded, researched and treated. A broad-based approach is needed to strengthen public health systems as a whole, instead of campaigners and governments working in silos and adopting a disease-centric approach alone.

However, the road to sustainable solutions for the world's numerous public health problems is a long and winding one. 

It involves, among other things, major investments in better education, infrastructure, multi-disciplinary health teams and designing smart urban spaces that help incorporate physical activity into our daily lives. 


But despite the threats it poses, public health investment rarely gets the attention it deserves with many governments instead prioritising boosting sluggish growth and controlling budget deficits.

We will never see a day when every cause is sufficiently funded, so continue to live in a world where health fundraisers vie for a piece of the same pie -- your donations. (Vox carried this thought-provoking piece on where we donate vs diseases that kill in the States.)

What I find unfair is some causes distorting funding priorities while other equally important ones -- certainly affecting a larger number of people -- lose out. Their crime? Not managing to create an awareness campaign that went viral.

Every one, like Andy Warhol said, can be world-famous for 15 minutes. But I do believe ALS, given its scale, has now enjoyed more than its fair share of the limelight. 

Which is why I'm going to spread the love to other causes. And why you may want to consider doing the same.

Of course, that's easier said that done. Objectivity depends on the subject.
Considerations such as the scale of the problem go out the window when someone you love is affected.

If, however, the ice bucket challenge is a sign of things to come, like an era of considered mass activism for worthy causes boosted by social media, I look forward to what the future holds. 

(Full disclosure: I worked for the International Diabetes Federation as their multimedia specialist from June 2009 to Feb 2011.)

9 Comments
Liliane
27/8/2014 07:31:22 am

Interesting read Rahul. Keep up the good work.

Reply
Mansi
27/8/2014 09:02:57 am

Well written article and I must commend you on bringing awareness to the more talked about diseases. My only point being, there is nothing like enough limelight when a certain disease isn't given funding because it isn't "mainstream" as you call it. Does this mean that we should wait for this to become 'popular' so that research is then funded? Diabetes, cancer, HIV are massively funded and that still doesn't mean that they don't deserve awareness. Every cause does. But this seems like saying, if I say I like or don't like apples,you would question how I could not like or dislike mangoes. It doesn't fit. Someone out there thought of a great way of bringing attention to something he is suffering from, and not just from himself, he might die before a cure is even found. But for a whole community. Yes it involved throwing a bucket of water and several news feed updates, but isn't it better than seeing someone's meaningless selfie or their shopping or xyz.? Let's just be a little tolerant and put things to perspective. Imagine your loved on suffers from a disease that isn't incurable but just not researched and obviously you don't have the millions to fund the research all by yourself and 5 years to live. This is about ALS. Maybe somebody should take up the challenge to bring about awareness for Diabetes?
And I am not fighting your thoughts or words, I think it is great that one thing has led to another.
I am only raising a slightly different concern, if that is allowed :)
Cheers!

Reply
Rahul Venkit link
27/8/2014 10:05:40 am

Hi Mansi,

Raising different concerns very much allowed. :)

If it wasn't clear in my post, I'm essentially saying -

1) Kudos to ALS for an amazing, inspiring campaign.

2) Yes, no health campaigner will agree (or admit) that his cause is sufficiently funded.

And no:

1) No where am I saying we should wait for disease to become 'popular' so that research is then funded

2) I have no problem with ALS filling my newsfeeds. In fact, I'm amazed at the public participation it has inspired, if not slightly envious. Other campaigns and causes can only strive to emulate such success.

And yes, objectivity depends on the subject - that's for sure.

Hope this clears things. Cheers.

Reply
mansi
27/8/2014 11:09:45 am

Rahul, your post was amply clear. I am in agreement to most you say. I just feel like the place you are coming from is slightly negative towards ALS because of it's new found rock starish fever, which in no time will die. What will remain is the 70 odd million dollars and a ray of hope to the people diagnosed with ALS. And of course as you mention, an impetus to all other causes/ngos to level the field. Maybe the scale is already bigger than it seems?

Also, I currently am a diabetes patient, well only thing being, I don't feel like a patient! I lost my grandfather to diabetes a few years ago, but that is all a different story.
When I read about ALS, I was frightened, to have a sharp mind and the will but still be dependent on somebody else for everything- to live, experience and just get by a day.. Disturbing, isn't it?

Reply
Rahul Venkit link
27/8/2014 11:42:24 am

Dear Mansi,

First, sorry to hear about your grandfather and all the best controlling your diabetes.

Indeed, many diseases can potentially be debilitating if not identified early and controlled. Which is why a broad-based approach is needed to strengthening public health systems in general, instead of campaigners working in silos or governments adopting a disease-centric approach alone. That's my overarching point.

Would like to emphasize I'm in awe of the ALS campaign and think there's a lot of learn from it. No negativity whatsoever. :)

Thanks for reading.

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