Why I won’t be doing the Ice Bucket Challenge

Image courtesy of Rachel Riley/express.co.uk

Image courtesy of Rachel Riley/express.co.uk Please note that Rachel did not do the challenge for the ALSA or MNDA. She participated for the James McCarthy Foundation and the use of the photo is purely for aesthetic reasons as most other pictures are bad quality.

 I haven’t yet been nominated for the ice bucket challenge and if I do, I will not be taking part. This is not to judge anyone else who has done it. Many people that I care about have done the challenge and I know their heart is in the right place. However, I do believe some people have simply jumped on the bandwagon with little knowledge of the disease or where their money is actually going (I do wonder if everyone who has done the challenge has even donated). I don’t mean to deny that raising awareness and money for a cause that was not well known is a good thing. Amyotrophic lateral sclerosis (more commonly known as “Lou Gehrig’s disease” in America or “Motor Neurone Disease” in the UK) is an awful, debilitating illness and I truly sympathise with sufferers and their families. However, I simply cannot condone the behaviour of the charities involved with it.

The American ALS Association admitted last year that only 27% of donations to their charity actually goes towards research. Other areas that money went to were “Fundraising”, “Administration”, “Patient and community services” and a whopping $8.5 million dollars to the highest paid part, “Public and professional education”. It all looks pretty straightforward and fair, doesn’t it? Well it isn’t. This extremely enlightening article examined the charities tax returns for 2013 and found that last year, over 50% of all money made by ALS appeared to line the pockets of the millionaires running the charity and others working for it. The CEO alone made well over $300 000 dollars last year. The largest amount of what was left went towards “Grants and other assistance to governments and organizations in the United States” and the article explains “Almost all of these recipients are medical schools, with strong ties to the pharmaceutical industry.” There is evidence of viable non-drugs solutions that help sufferers of ALS such as a strict ketogenic diet containing coconut oil, but the charity has not done any research on any of them. The reason being because they support the corporate giant that is the pharmaceutical industry. This article contains reviews of over 500 studies into natural approaches to ALS.

Another point I’d like to make is that ALS is extemely rare. There are about 5000 people in the UK with the condition and approximately 5600 people are diagnosed each year in the US. My aim is not to speculate that any one person is more in need of help than another, however the charity has already made in excess of $70 million dollars which is disproportionate to the amount of sufferers. This article states “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).”

Not only that, this year 3.4 million people will die from a water related disease and 780 million people do not have access to clean water. And yet thousands of us have chucked this precious resource over our heads? 

Both the ALSA and British Motor Neurone Disease Association use animal testing in their research which evidence suggests is unnecessary for this disease because humans and animals do not react to ALS in the same way. More often than not, tests conducted on animals do not have the same result as when they go onto human stages, thus rendering the animals pain and suffering totally worthless. Due to this, I don’t understand why it’s still considered acceptable to use animals for research into ALS. In addition, many other charities have stopped testing on animals preferring to use alternative methods. This article states “mouse experiments have been criticised in the scientific literature for the ‘poor correlation’ between data generated in labs from animal ‘models’ and the clinical reality. That so many drugs have ‘succeeded’ in animal tests but have gone on to fail in human clinical trials is evidence that a more rational research strategy is long overdue.”

Neurologist Aysha Akhtar has published an article on the Huffington Post entitled “In Defense of Pamela Anderson”. Pamela came under media scrutiny when she spoke out that she would not do the challenge due to the fact that the ALSA tested on animals. Aysha cares for patients with ALS and is the principle investigator of grant-funded research. She details in her post why animal testing is simply ineffective towards finding a cure for ALS and it is well worth a read to understand exactly why it doesn’t work.  She explains “ALS is a uniquely human disease. Researchers have artificially created animals who show some symptoms that resemble ALS. But as in so many disease areas, the animal “models” only mimic some of the symptoms of ALS and they differ in what symptoms they produce and the causes behind those symptoms. Thus these animal models are extremely poor substitutes for studying uniquely human diseases.”

The ALSA have continually funded research to create different animal “models” of the disease, each of which have gone on to be proved useless. One mouse model usually died from bowel obstructions when given the disease whereas humans with ALS normally die due to the inability to breathe and muscle wasting. Aysha goes on to say “my greatest fear is that we may have found the cure long ago, but it was abandoned because of misleading animal experiments. Drugs that could have worked in humans may have been tossed out because they did not work in mice.

We need to be smart and strategic with how we use our research dollars. How much closer would we be to a cure today if instead of wasting millions of dollars on failed animal experiments, the money had been used to create more effective human-based testing methods that accurately recreated the disease?”

The ALSA has not yet invested in a cure or anything even close to a cure since it began in 1985. Frankly, the sufferers of this illness deserve better than what the charity is doing. There is glaring evidence of the ineffectiveness of animal testing yet the ALSA and the MNDA continue to fund it. They will not fund natural approaches and the only viable reason for not doing so is keeping the big bucks pharmaceutical industry in their back pockets. The ALSA and MNDA should spend their money on funding cutting-edge, human based technologies and conducting studies directly relevant to humans and perhaps then they would be closer to actually curing this awful disease.

This blog post is predominantly opinion-based. This post does not aim to discourage people from donating to the ALSA, MNDA or to any other charity. This post does not seek to discredit ALS sufferers and their families. Views on animal-testing and charity are my own and I do not seek to influence or change opinion. All of the facts and figures cited in this post have been researched using trusted resources however I am not responsible for any errors.

Follow me on twitter @_oliviaeaton