Last year, the ALS ice bucket challenge went viral across the United States with millions of people joining in on the phenomena of pouring ice water onto one’s head in order to raise awareness for amyotrophic lateral sclerosis (ALS). The movement raised close to $100 million for the ALS association and was a great launching pad for bring about awareness to the little-mentioned/covered disease. This was 2014. What of this year?
This ALS association attempted to reintroduce the event again this year with the intent to make a yearly tradition, but the movement was nowhere close to as successful as the first iteration. They only raised close to $1 million this year, a significant drop in donations from only one year before. So what happened?
The problem for the ALS association is one that many major disease organizations struggle with. Consistency. Public opinion and in turn, money, is controlled by the mass media that dominates our culture. Information is delivered, controlled, and modified by the media to serve corporations and to drive personal gain on behalf of those that own these companies. They decide what the public has the right to know and if we need to know information. As a firm believe in the free trade/distribution of information, I think that this sort of behavior/deliberate acts of population manipulation is utter bullsh*t. It inhibits the ability for the public, especially those that doesn’t take full advantage of the internet, to make informed decisions without all the facts being presented.
Now you may be asking, how does this apply to ALS and other smaller disease focused NGO’s? I said it had to do with consistency. That means that these organizations are not able to consistently get their cause out their effectively without cooperation from the media. The Susan G. Komen for the Cure Foundation has done a brilliant job of being consistently marketable and present in the news, allowing it to flourish and rake in massive amounts of donations. In 2010 alone, the foundation raked in over $400 million. That is four times the amount that the ALS foundation raised in their largest year ever. And I think this really hits on the larger issue here, which is public perception of diseases and how we feel we should be appropriating our charitable donations.
Everyone has someone in their family affected by cancer making a very real and relatable disease. When a disease personally affects your reality and your daily life, you are more inclined to take part in fundraisers and events that support a foundation that fights it. This is why cancer research gets a large portion of the donation money from the public. The more support an organization gets from the public, the more money it can put into marketing, allowing it to be more consistently present in the eyes of the public, allowing even more money to pour in, creating a cyclical flow of events.
Less common diseases like ALS are not as present in the forefront of public opinion due to their relative affliction rate and how widespread their problem is. It isn’t to say ALS isn’t as dangerous or lethal in comparison to cancer, but it affects far less people that it is often forgotten, in turn hampering the ability for scientists to find a cure and to actually help those who are in need of it. It isn’t consistent enough of disease to warrant consistent public attention, which is a rather brutal way of saying it isn’t lethal enough. And that is the sad reality of ALS.
So what can be done? A flip flop in thinking of the American public is a good place to start, but isn’t that a good place to start for everything? We as a society should care about cancer research and should put funding into that because it is important, but cancer is such a diverse and multi-faceted issue that it is sometimes hard to see a light at the end of the tunnel. ALS, while also being a complicated disease, could simply be a few years of research away from a major break through.
The point I am trying to get at here is that there isn’t enough money to go around for the amount of research that needs to be done to make major breakthroughs on these diseases. We don’t have enough charitable funds to fully support all of these wonderful foundations and charities and so we pick and choose, typically based upon those that affect us and those that the media exposes us to on a regular basis.
This blog post was intended to cover the facts on ALS and what its mechanisms of action are within the body, but I felt this was an opportunity to get real with how I felt about the commercialization of how we treat diseases and to acknowledge the fact that not all diseases were created equally. It sucks, but it is the reality we live in.
ALS: Of Ice Buckets and Men.
