2 Questions about the ALS Ice Bucket Challenge

by Benjamin Studebaker

In case you’ve been living under a rock, the ALS Ice Bucket Challenge involves donating to the ALS Association and/or dumping a bucket of ice water over one’s head to raise awareness for ALS, a rare neurodegenerative disease. One can then challenge additional people to take the ice bucket challenge, raising donations and awareness for the disease:

 

It seems there are two kinds of people these days–people who are enthusiastically participating in the ALS ice bucket challenge and people who think it’s stupid and annoying.  To answer this question, we need to ask two more.

Our two questions are:

  1. Is an ice bucket challenge to raise money for a deserving cause a good thing?
  2. Is ALS a deserving cause?

Let’s take them in turn.

Is An Ice Bucket Challenge to Raise Money for a Deserving Cause a Good Thing?

Many people are critical of the ice bucket challenge on the grounds that it is a classless, gauche way to raise money for charity. Many of the participants are clearly more interested in being part of the trend than they are in truly combating ALS. We know this in no small part because the ice bucket challenge has been extraordinarily effective as a fund-raising tool. During the challenge, the ALS Association has collected $100 million, far more than the $2.6 million it collected last year over the same period. Where were all these people in years past? Certainly not paying attention to ALS. Commentators like Slate‘s Will Oremus would like to see people donate to ALS without participating in the attention-seeking challenge, but unfortunately human beings just are not wired that way. We are much more easily motivated by peer pressure and entertainment than we are by statistics, cogent arguments, or other kinds of appeals. Without the ice bucket challenge, donations would certainly have been far lower. If we really care about a deserving cause, we will prioritize it ahead of our concern for the moral virtue of the donors. Charitable giving does not need to be classy or honorable to be effective. Like most good marketing strategies, we can be annoyed by the ice bucket challenge while nonetheless recognizing its efficacy as a tactic. Even if it does not appeal to us individually, we can still see the greater good that it achieves through those who are motivated by fame-seeking.

That said, there is a further complaint that may be raised against this kind of challenge–its potential to lead to a dangerous escalation in the severity of the dares. As the ice bucket challenge becomes more widespread, participants increasingly resort to more drastic measures to draw attention to their renditions of the challenge. One participant in Scotland jumped into an abandoned quarry and drowned. The ice bucket challenge has also increased the incidence of participation in the dreaded “fire challenge“, in which participants set themselves on fire. While the fire challenge often leads to severe burns and hospitalizations, it is rarely fatal. One mother has even been arrested for assisting her son in doing the fire challenge:

 

That said, only exceptionally stupid people are likely to participate in the fire challenge. If the cause is deserving and the challenge an effective fundraising tactic, the potential lives saved in the long-run far outweigh the immediate risk this kind of challenge poses to really stupid people. This brings us to the next question:

Is ALS a Deserving Cause?

It matters a great deal whether or not ALS is a deserving cause because of something called “funding cannibalism”. Research shows that for every dollar a charity manages to raise through campaigning, 50 cents of that dollar would have otherwise been donated to some other charity. This results from a phenomenon psychologists call “moral licensing“. If a person does something he considers charitable or good, it makes him less likely to do other good or charitable things in the future.  In sum, it is likely that only half of the money the ice bucket challenge has raised is new money that would not otherwise have gone to charity. The remaining half is money that has been diverted from other causes to ALS. Because of this fact, our standards for a “deserving cause” need to be quite high.

Because charities cannibalize one another’s funding, for a cause to be deserving it has to be more important than the average charitable cause.  According to the ALS Association, ALS kills 2 people per 100,000. This means that every year in the United States, ALS is responsible for around 6,278 fatalities. How does that compare to other deserving causes? A while back, I created something I call the “Studebaker National Tragedy Index”, which measures the severity of terrible things:

Studebaker National Tragedy Index (SNTI)

 Tragedy Level  Fatalities (% of 2012 US Population)  Examples (# of US fatalities)
 1 1-10 (0.000003%)  2012 Benghazi Attack (4), 2013 Boston Marathon Bombing (5)
 2  10-100 (0.00003%)  1999 Columbine High School Shooting (15), 2012 Sandy Hook Massacre (28), 1992-1993 Intervention in Somalia (43)
 3 100-1,000 (0.0003%)  1995 Oklahoma City Bombing (168), 2012 Hurricane Sandy (286), 1990-1991 Gulf War (294)
 4 1,000-10,000 (0.003%)  2001 September 11th Attacks (2,977), 2005 Hurricane Katrina (1,833), 2003-2011 Iraq War (4,487), 2001-? Afghanistan War (2,313), 1941 Attack on Pearl Harbor (2,403)
 5  10,000-100,000 (0.03%)  One Year of US Gun Violence Deaths (32,163), 1950-1953 Korean War (36,516), 1955-1975 Vietnam War (58,209), One Year of Alzheimer’s Deaths (83,494)
 6 100,000-1 Million (0.3%)  1917-1918 WWI (116,516), One Decade of US Gun Violence Deaths (320,000), 1941-1945 WWII (405,399), 1861-1865 Civil War (750,000), One Year of Cancer Deaths (574,743)
 7 1 Million-10 Million (3%) One Decade of Cancer Deaths (5.7 million), Number of African Slaves Killed in Transport & Seasoning Camps Alone (7 million)
 8  10 Million-100 Million (30%)  No modern US example. See The Black Death in the 14th Century (Killed a fifth of the world’s people) or World War II as a whole (75 million)
 9 100 Million-1 Billion (up to 100%)  No modern US example. See the Genocide of the Native Americans, which killed more than 90% of the pre-Columbian native population.

According to the index, every year ALS constitutes a Level 4 tragedy. All tragedies are terrible, but some tragedies are more terrible than others. Let’s compare a year of ALS to a year of cancer in the United States. A year of cancer (a Level 6 national tragedy) kills 91.5 times more people than a year of ALS.

But wait–because ALS kills far fewer people than cancer, it typically receives less attention and funding. To really get a sense for whether our dollars are better spent on ALS or on cancer, we need to know what the ratio of dollars to deaths is. Over a typical year, the ALS Association would ordinarily raise $19.7 million. This is $3,136 per annual fatality. How does cancer compare? The American Cancer Society takes in $924.4 million every year. That’s $1,608 per annual fatality. In sum, relative to cancer, the ALS Association is already overfunded even in an ordinary year.

Once the funds raised by the ice bucket challenge are taken into consideration, the ALS Association is found to have even more money per fatality. If we substitute out an ordinary August for the ALSA with this past month, it would have $117 million in a year–$18,650 per annual US fatality. That would make it roughly 11 times better funded than the leading US cancer charity per fatality.

It is true that the ALS Association is a little bit more efficient than the American Cancer Society (according to Charity Navigator, the 72% of the funds donated to the ALSA go into services while only 60% of the ACS’ funds do), but this efficiency gap is not large enough to put the ALSA on equal footing.

Cancer is not the only charitable cause that is less effectively funded per fatality than ALS. Heart disease kills 600,000 Americans per year–more than cancer–yet the American Heart Association receives only $632.6 million every year, a mere $1,055 per annual fatality. Unlike the ACA, the AHA is slightly more efficient than the ALSA, with 78% of its funds going to services.

I could go on and on making comparisons, but it’s easiest to just put this in a big table. Here are a few more horrible scourges:

Cause of Death Annual Fatalities (USA) Annual Revenue for Leading  US Charity Dollars per Death
Heart Disease 600,000 $632.6 million $1,055
Cancer 574,743 $924.4 million $1,608
Alzheimer’s 84,974 $268.9 million $3,165
Diabetes 73,831 $224.9 million $3,047
Suicide/Depression 39,518 $9.9 million $252
Cirrhosis 33,642 $7.7 million $230
Gun Violence 32,163 $3.8 million $119
Parkinson’s 23,107 $87.5 million $3,788
ALS (w/o ice bucket) 6,278 $19.7 million $3,136
ALS (w/ice bucket) 6,278 $117 million $18,650
Lupus 1,406 $24.5 million* $17,425
Huntington’s 712 $6.4 million $9,006
Progeria 70 $1.8 million $25,810

 

*I used the top two charities for lupus combined, because they’re about equal in size. The others have one primary US charity that dominates most of the funding.

A couple trends stick out:

  1. Contrary to what might be popular belief, the biggest diseases are served worse by charity than the smaller ones relative to their fatality rates.
  2. Causes of death that carry social stigma (e.g. depression, cirrhosis, gun violence) are almost completely ignored.

Unfortunately for the ALS Ice Bucket challenge, my research shows that it already was better served by charity relative to its fatality rate than the big killers and that the challenge just further expands the imbalance. While ALS is terrible and we should feel awful for all those who have it, as charitable causes go, it is not particularly deserving.  Because of moral license and funding cannibalism, I cannot in good conscience sit here and tell you that the ALS Ice Bucket Challenge is a net social good. Doing so would do serious disservice to the victims of cancer, heart disease, diabetes, depression, cirrhosis, gun violence, and Parkinson’s, and probably many others. If we truly value the lives of people equally, we cannot in good conscience give ALSA more money per fatality than we give to other charitable organizations.

If this view strikes the reader as heartless, I ask the reader to consider the case of someone like Robin Williams, a victim of depression whose disease receives only a tiny fraction of the funding per victim that ALS gets. Consider the tens and hundreds of thousands who die of these other diseases. If money for ALS means less money for these people’s ailments (and research suggests that it does), the ALS Ice Bucket Challenge has done them a tremendous disservice.