Summer 2014 saw the explosion of the ALS (Amyotrophic Lateral Sclerosis) Ice Bucket Challenge as it went viral in North America and Europe. ALS is a neurodegenerative disease that ultimately destroys motor neurons and inhibits the brain’s ability to control muscle fibers. The challenge involved dumping a bucket of ice water on a person’s head and nominating other individuals to undertake the same challenge. Should a person fail to complete the challenge, they would forfeit by donating a sum of money to the ALS association (ALSA). This campaign gained traction as celebrities, athletes, and philanthropists tried to complete the challenge in exciting and innovative ways.
One of the most cognizant critiques of the challenge belongs to Scott Gilmore’s column in Maclean’s, in which he explains “Why the Ice Bucket Challenge is Bad for You”. I am of the opposite opinion and here, I outline the concerns of Mr. Gilmore’s column and try to refute his arguments.
In general, the ALS Ice Bucket Challenge has largely been a positive experience for the ALSA and the public in general. The New York Times reported more than 1.2 million videos were shared on Facebook and tweeted more than 2.2 million times during the campaign. Views of Wikipedia’s ALS page grew from 163,300 per month to 2.89 million views in August and the ALSA reported an additional $100 million during the campaign period compared to the previous year.
Mr. Gilmore’s column in Maclean’s magazine outlined three major points, shared with many, that slam the ALS challenge. At the crux of these negative sentiments is the understanding that charitable donations are finite and one donation to one group means one less to another.
Where is the greatest need?
The column states that “ALS research is not an especially great need in public health” due to a low mortality rate (600 deaths in Canada in 2013) when compared to other diseases such as cancer, (72,000 deaths), heart disease (47,000 deaths), and cerebrovascular disease (13,000 deaths). However, substantial amounts of funding are required to sufficiently study a disease, and providing funding in dollar values per mortality may not reflect the greatest research need.
Where will my dollars have the greatest influence?
Fewer people get ALS (6,849 deaths in 2013 in the US) in comparison to heart disease (596,577 deaths in 2013 in the US) but ALS enjoys a larger per capita share of private donations ($3,382/death vs. $90/death). However, the focus on private donations is misleading. ALS receives $40 million dollars in funding from the NIH while Heart Disease receives $1.262 billion. While this is just one example, public funding agencies are more privy to diseases that affect a large proportion of the population. Unfortunately, this means diseases with lower incidence may be underfunded, making private donations invaluable to combating the illness.
What is the most urgent problem?
Current global crises such as Ebola and Syria require urgent fixes. However, the research community is not only concerned with today’s issues. Many neurodegenerative diseases are funded more heavily as funding agencies anticipate an aging population and recognize problems that will occur if cures or treatments are not attempted today. These discoveries require time and if a cure for ALS were to be discovered tomorrow, it would still take years before it could be implemented for every patient with success due to legal, funding, and other complicating issues.
Despite inconclusive evidence indicating that charitable dollars are finite, donations garnered by the ALS Ice Bucket Challenge do not need to be scrutinized like government budgets because individuals do not have a responsibility to spend their money on the most pressing cause. Just because a disease has fewer casualties, does not mean that it deserves less funding. At the end of the day, the ALS Ice Bucket Challenge was a positive social media campaign and no individual or group should be chastised for learning about ALS and wanting to donate.
Dennis Lee
Latest posts by Dennis Lee (see all)
- Broken Telephone - June 13, 2016
- The Great (un)Changing (un)Scientific Debate on Childhood Vaccines - September 27, 2015
- The New Reddit Journal of Science - March 30, 2015
I was diagnosed last July. I was wheelchair bound. My feet hurt horribly on the foot petals. I started ALS/MND programme about 4 months ago. I’m now able to walk down the street and back at least I couldn’t do that prior to the ALS treatment. It doesn’t make the ALS go away but it did give me better quality of life. I got the treatment from Uine healthcentre . c om
Thanks
I was diagnosed with bulbar ALS in May 2024. I live in Texas, and I’m 68 years old. I take Nudexta medication to help with the emotional outbursts of laughing and crying. The weakness, slurred speech, and muscle loss progressed quickly. Mobility has been an issue since Dec 26, when I fell and broke my hip, and although I made small strides at first, I felt like my life had been placed on a countdown, as there was no known cure other than the prescription of riluzole medications, vitamins, and therapies. As the disease progressed, my symptoms worsened. With my neurologist’s guidance we decided to try other approaches and started the ALS/MND treatment, and it changed everything. Within 5 months, I noticed more strength in my limbs, clearer speech, and I have stopped using feeding tubes. I’m starting to learn how to walk again & I now sleep better. This ALS/MND treatment program gave me back control and hope. we got the treatment from uine healthcentre. ne t This is a game changer for people with ALS.