Moneeza Walji is the CMAJ Editorial Fellow 2014-15
You’ve likely been nominated by someone in your family, your group of friends or in your organization to do the ALS Ice Bucket challenge. Amyotrophic Lateral Sclerosis (ALS), often called Lou Gehrig’s disease, is a disease characterized by the progressive degeneration of motor neurons. The cause of the disease is unclear and it has no known cure. Approximately 2,500 to 3,000 people in Canada are affected by ALS according to the ALS Society of Canada. As the ALS Ice Bucket challenge has taken Facebook – and the world – by storm, social media is abuzz with a new term: “Slacktivism”.
Slacktivism, according to the Oxford Dictionary is an action “performed via the Internet in support of a political or social cause but regarded as requiring little time or involvement”. The idea is that the Internet has inspired fads or trends to drum up support for a cause that most people don’t feel passionate about. I guess the question is: Is it all that bad if it raises a LOT of money?
What has the ice bucket challenge done?
Most people say the biggest thing the Ice bucket challenge has done for ALS is to raise awareness (I’d argue it’s raised a whole lot of money too but we’ll get to that). According to Facebook (via Time magazine), 2.4 million unique videos had been uploaded of people doing the Ice Bucket challenge by August 18th, 2014. That’s a lot more people who know something about ALS than before. Whether that increased knowledge results in better health for the people who know about it, is arguable. Increased awareness could result in more empathy for those experiencing the illness. At the same time, ALS is not a public health issue in the same way that Hepatitis, HIV/AIDS or even Ebola are. Awareness of the disease doesn’t necessarily translate into better health for those who know about it. What the current awareness has translated into is….
Money, money, money. Current statistics for funds raised by the Ice Bucket Challenge are staggering. The ALS Society of Canada has raised over $10 million dollars for the cause, which is over their $7 million national operating budget. In the same time frame, the US ALS Association has received $94.3 million dollars in donations, and donations have not shown signs of slowing yet.
We also can’t forget the shameless self-promotion the initiative has afforded those in the spotlight. Politicians, performers, socialites are all throwing themselves, and buckets of ice water behind the cause, raising immense sums of money and branding themselves as “people who care”. Positive publicity has been a huge advantage.
So what are the drawbacks?
Some say the ice bucket challenge could be harmful to your health. Having freezing water dumped on you could be a recipe for disaster if combined with the right risk factors. Others say it is a waste of clean water, for the millions without it around the world and for those in California experiencing a drought.
I’d argue probably in addition to the health drawbacks, skewing the priorities of philanthropy is a large concern. Perhaps I am a charitable cynic but let me walk you through an historical exercise:
In early 2001, the United Nations Secretary General Kofi Annan challenged governments to address the international HIV/AIDS epidemic that was overtaking much of the developing world by creating a Global Fund to address the problem. He asked governments to pledge money to support the creation of this fund. This was at a time when UNAIDS (the United Nations Agency for HIV/AIDS) estimated the number of adults and children living with HIV/AIDS worldwide to have been 28.6 million. (To provide perspective that was the equivalent of 92% of Canada’s population in 2001). In 2001, Canada pledged 25 million dollars to the Fund. That amounted to about $0.87 per person affected in 2001. We congratulated ourselves on the impact we were making on the disease, but were we really making an impact? Currently the >$94 million dollars that’s been raised for ALS amounts to at least $209 per person living with ALS worldwide. The discrepancy is obvious. I am not trying to say ALS is not a worthy cause. Thousands of Canadians live with this debilitating disease and money is needed to fund research to find a cure and support their quality of life. But when “Slacktivism” takes hold, what does that mean for other worthy causes? Are people less likely to donate to other causes? The jury’s out.
Viral philanthropy campaigns are great for the causes they fund, but are in no way representative of the disease burden they address. ALS may very well have fallen in the category of “orphan diseases”, that is, diseases that are debilitating but, fortunately, rare. This recent infographic (which quickly went out of date due to the speed at which funds were raised), shows money donated in comparison to deaths attributed to the disease.
Current conflicts have created thousands of refugees in Syria, Iraq, Gaza, and Sudan and many organizations could use an urgent influx of money to deal with these crises. Similarly, the Ebola crisis in West Africa has been deemed a public health emergency of international concern by the World Health Organization and seems like a more appropriate cause for launching what is, essentially, a crowd funding exercise.
So is it all hopeless? Of course it’s not. There’s a collective feeling of doing good, enthusiasm, and being part of a movement, that has appealed to many. Though my Facebook feed is still crawling with videos of individuals, families, companies, and schools doing the ice bucket challenge, some people are taking this Slacktivist approach to causes that really matter to them. More individuals are doing the ice bucket challenge and donating to ALS along with other causes they care about. By giving a shout-out to organizations that matter to them, they go beyond being part of a viral campaign, to making a deliberate decision to stand behind a cause they believe in. That’s exciting. That’s a kind of activism I can get behind.
What do you think?
My husband was diagnosed with ALS (amyotrophic lateral sclerosis) when he was 63 years old 4 years ago. The Rilutek (riluzole) did very little to help him. The medical team did even less. His decline was rapid and devastating. His arms weakened first, then his hands and legs. Last year, a family friend told us about Organic Herbal Clinic and their successful ALS TREATMENT, we visited their website www. organicherbalclinic. com and ordered their ALS/MND Formula, i am happy to report the treatment effectively treated and reversed his Amyotrophic Lateral Sclerosis (ALS), most of the symptoms stopped, he is able to walk and able to ride his treadmill again, he is pretty active now.
This is a nuanced and well balanced consideration of the issues surrounding the Ice Bucket Challenge. I’m firmly in the camp that the ends (money collected to fund research) justify the means – I’ve tried to argue this here:
Thanks Moneeza for what i feel are balanced comments on what has been a viral phenomenon. i’m not sure what the guy before me wrote cos PARAGRAPHS!
i have had similiar wrestlings with the idea starting with the ridiculous notion [as it was first presented to me] of people dumping ice over their heads so they could earn not giving to charity, but then seeing some of the figures [including the ones you have mentioned] in terms of money and awareness it does seem to have had a monumental influence. But then today again i read a breakdown of how the funds ALSA gets in are distributed and that was a little sobering again.
So still unsure but stuck some of my own thoughts and musings over here: http://brettfish.wordpress.com/2014/09/01/my-ice-bucket-challenge-challenge
love brett fish
I think you make some valid and interesting points, but let us not lose sight of what has happened here. It is important to take the emphasis away from ASL. They are the benefactors of this viral awareness campaign, a campaign that may have had 100-200 people in the USA doing it raising maybe a few thousand dollars extra. However the world over has taken this on, as friends challenge peers from all over the globe to take on the challenge. The argument about what the public ‘should’ focus on and that more people die of AIDS than ALS is not the reason the campaign was started. It was the fact that people were not aware of ALS on the whole, it only affected a relatively small number of people and therefore the amount of money being donated each year was coming mainly from those affected by the disease personally (friends/family) not the case when you look at something like AIDS. The pessimists that talk about wasting of water whilst other countries are in drought are again missing the point. More water is wasted daily by broken pipes, leaving the tap running whilst brushing your teeth, or before a shower waiting for the water to get hot…and seeing as many are counteracting this by using recycled water (from rain, an old bath or sea water) this again is missing the point and trolling a perfectly acceptable challenge. Also anyone injuring or killing themselves doing the challenge are not being considerate and true to the challenge itself, they are making it about themselves and not “awareness” of a debilitating disease. So let’s not lose sight of what was started and what has happened. Focus on the positive that many people around the world have opened their wallets where before they were closed to any form of giving, be thankful that it is one step towards finding a cure for another disease. As let’s be honest the more diseases that have cures the better as less money is needed to be spent on research and so that money can go somewhere else! So ALS have benefited from a recovering western world from financial crisis, who have had a bit of light-hearted fun…at no point can ALS put a stop to this, awareness is there and their monetary targets hit, will this mean an increase in donations to ALS next year…only time will tell on that one. As you pointed out the public have also spoken and donated to other causes rather than ALS as they felt closer to those causes, so again without this campaign millions of $s extra has been donated to other causes. The world will decide when this should stop, I am one that hopes it only stops when everyone (that can) around the world has experienced a small bit of discomfort donated money and raised awareness of a cause close to their heart.