ALSA Ice Bucket Challenge

August 31, 2014

I've finally been challenged to do the ALS Ice Bucket Challenge (IBC). Well actually I've been "Nominated" twice in fact, by people who apparently don't understand the difference between a Challenge vs. a Nomination. That may be a silly point but considering "Challenge" is right there in the name it drives me nuts that most people seem to get this concept wrong.

Enough picking of nits, there is some serious business afoot that needs to be addressed. Until I was challenged personally I've been content to sit on the side lines biting my tongue happy to stay out of this whole deal. I'm not a fan of beating my head against the wall, and I fear what I am about to say will amount to little more. Like many of you I have clicked on and watched many of the IBC videos. We have done so no doubt because they are very entertaining, and in there lays the rub.

These videos are, for the most part just entertainment. They entertain those who watch, offer a placebo effect of doing good to the person who does them, and generates a whole bunch of money for people who don't suffer from ALS. I know this won't be a popular view, which is why I've stayed out of it as long as I could, but now that I've been called out, I'm going to speak my mind. Anyone who knows me knows I'd rather be right than popular any day, which may explain my rather small circle of friends, so here I go.

There are three basic flaws in this IBC (Or the upcoming Pink-Tober & Mo-Vember campaigns) and it is not until you get to that final third fatal flaw that this whole thing falls apart. This is probably by design because as long as no one looks too deeply everyone can live in denial and just feel good about themselves. Yes I realize that most people involved in this mean well and have good intentions, but a lot of false hope was built on good intentions and when people are suffering from diseases and people are giving away their hard earned money, false hope and good intentions don't really amount to much.

The first flaw is that a lot of people taking up this challenge are just doing creative videos of themselves dumping water on their heads as a vanity project to get attention and pat themselves on the back for all the good they are doing, despite not donating a single penny. The excuse or denial here is "Well at least we are creating awareness, look at the national donations, they are way up". Way to pass the buck. I'm sure you're individual video was the one that made the difference. For those who did in fact donate or are pacified with the "I've created awareness" we then have the second flaw.

What is the ALSA doing with all of this money? The truth is the vast majority of the money you are donating is not going towards research and finding a cure for ALS. The numbers are disputed somewhat. I've heard people claim as low as 7% is going towards research and the ALSA claims that number is closer to 27%. Lets for the sake of convenience and benefit of the doubt, use 25%. Three quarters of the money you donate to help find a cure isn't going where you want it to. Most of it is going towards "Awareness and Education", which could be translated to be read "Advertising and Promotions" to ensure more money gets donated so they can again put only one quarter of it towards what they are claiming it's for in their promotion and advertising. It is a deceitful cycle that keeps a lot of people employed earning great livings while delivering very little of the money donated to the cause they are promoting. To this we offer ourselves the excuse, "Well 25% is better than nothing, that is still a lot of money, and someone has to run these charities" To this I offer you the popular concept of cutting out the middle man. Why are we donating to these Charity groups that only deliver a small percentage of our donations to the research groups? Why not donate directly to the people that are actually doing the work, the people trying to discover treatments and cures?

This is the third and final flaw. The reason we don't donate directly is because then we would discover that the portion of our donation that isn't going towards salaries and advertising, that 25% that we think is actually doing good, is going into the pockets of Big Pharma. Yes the pharmaceutical companies are getting your money. You are giving your money to some of the biggest, richest, most profitable companies in the world. You are helping cover the cost of their research and development programs to allow them to make higher profits. You are not financing new research, this is research they are already doing. This is how they make their money after all. They create new drugs to treat diseases, and when they find a new treatment they patent it and sell it back to you at a huge profit.

Think about that for a minute. Millions upon millions of dollars are being GIVEN to a company to help find a cure or treatment of a disease and if they find a cure/treatment, the people you GAVE that money to will then patent that cure and sell it back to you at a huge profit. Wait...What...profit? I thought we donated to Charity, a non-profit organization. Oh right that's another reason why we don't donate directly to the people doing the research if we did they wouldn't be able to claim it as a non-profit or a charity, and they are creating these drugs with the sole intention of making profits, hundreds or millions of dollars in profits. Yes your good intentioned donations, or at least the part that isn't going towards salaries and advertising, that huge 25% of it, is going towards increasing the profit margins of some of the richest most profitable companies in the world. Doesn't that make you feel all warm and fuzzy inside.

I think I will end my rant here because I don't want to get started on all of the harm Big Pharma is doing to our medical system. If you've been to the doctor in the last decade you've no doubt already discovered that doctors no longer treat patients, they prescribe drugs to them. If you go to a doctor because you are experiencing severe back pain, the first course of action is to prescribe painkillers. A good Dr. if you are lucky enough to find one of the good ones, will also advice you that weight loss and exercise to reduce the strain on your back and strengthen your core would probably solve your problems completely, but unfortunately most people are too lazy for that and would rather just fill their prescriptions.

And with that we've come full circle and found the root of the problem, laziness; one of the original seven deadly sins: Sloth. It's far easier to just dump a bucket of ice water on your head, wear a pink ribbon in October, or grow a silly moustache in November, than it is to look a little closer and find out that there is a huge problem with the system. While I have not looked as closely as I probably should have, thanks to my friend Paul Lazenby, my eyes are at least open. I will not be accepting the Ice Bucket Challenge, because I do not wish to give my money to Big Pharma and since I have no need to stroke my ego by doing a fun video to illustrate what a great guy I am, I don't see the point.

That said I will be looking into finding an ALS related charity that actually helps those suffering from the disease and donate my $100 to them. If that proves too hard a task I will just go out and find someone who is suffering from the disease and give them my $100.

In closing I would just like to clarify that my intent was not to damn those who have taken part in the IBC or other charity fund raisers. Most of you, as I stated earlier, mean well, I'm just suggesting that if you really want to make a difference, good intentions alone don't really accomplish much.

I look forward to your letters and email,

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