Why I’m not doing the #icebucketchallenge or donating for ALS

Boy fills up buckets with water in Northern Tanzania. (Credit: Tom Murphy)

I was called out for the ice bucket challenge two weeks ago. Until today, I did nothing. In this column, I will try to explain my mixed personal feelings and what I decided to do with my $100.

I have been researching and reporting on the issue of water access for a few years now. Pouring out water does not feel right for me to do because I cannot forget its importance for so many people.  I think about the boy seen in the top image who has to fill up dozens of buckets of water to bring home for cooking, bathing and drinking. I think about the muddy water that I had to filter while living in Kenya when the well I was using was running low. I think about the girl who I saw walking past her school with a bucket of water on her head as her classmates returned to learning. I think about the drought that recently stuck the middle of the US and the current drought in California.

Water is too important in my life to waste when there are other alternatives. I say this not in judgement of others actions. I’ll admit it. I still get a good laugh out of seeing family, friends and celebrities dump ice cold water on themselves. The reactions are often hilarious. Despite that I will not be participating in the ice bucket challenge by giving to the ALS Association or taking an ice water shower. Though, I will participate to the extent that I donated $100 elsewhere.

I was initially skeptical, having seen how such campaigns can lead to a rise in social media action, but little else. It was not until I read an article about the challenge a week after videos started appearing on my feed that I learned the challenge had a giving component. I was under the impression that it was only about awareness.

I was wrong. I was also wrong to assume people would not give. More than $90 million has been donated to the ALS Association in less than a month. Last year, the association raised $2.6 million in the period between July 29 and August 26. It is hard to see the ice bucket challenge as anything other than a remarkable success for ALS research. The money going in keeps picking up steam with an average of $9 million donated each day for the past week.

Critics say that the campaign is slacktivism. They are right. They are also right that it is about peer pressure and making a video on social media. Those are also the reasons why the campaign is keeps bringing in money to the ALS Association. Writing off the campaign and demeaning the people who are participating is foolhardy. When all is said and done, some $100 million will have been raised for an obscure disease that affects a small portion of people.

Most people have no connection to ALS and are giving. That is a powerful achievement in fundraising. Even though I recognize all of that, I am not choosing to participate by dumping a bucked of ice and water on my head. I will make a donation, but it will not be to the ALS Association. Below I will explain some of my scattered thoughts on the campaign.

(Credit: Tom Murphy)

(Credit: Tom Murphy)

Fleeting Awareness

Remember #BringBackOurGirls? First Lady Michelle Obama and thousands of other activists held up signs and used social media to raise awareness about the more than 200 Nigerian schoolgirls who were abducted by Islamist militants. That happened 135 days ago. The girls have yet to return home. Committed advocates continue to to make noise about the problem, but it is an issue that is off the radar for most Americans.

What about #Kony2012? The video about a warlord and the atrocities committed by his followers in central Africa garnered more than 100 million views in a matter of days. News reports covered the short film, a backlash followed and people forgot about Joseph Kony. The LRA leader is still at large in the region near Central African Republic and South Sudan. That is not because the campaign failed, but much like the girls in Nigeria the name Kony is not uttered by many Americans.

The hype cycle of the ice bucket challenge will soon end. The thing that drew people in was the fun in getting to force three people to take part in the challenge. This multiplier makes it well worth the momentary freezing feeling. ALS gets mentioned in videos and coverage in media rises with the virality of the campaign. That soon will wane and people will go back to not thinking about a disease that will mostly likely never impact their lives.

The hope is that the massive influx of money to the ALS Association will support its work for the years to come. They will try to convert the new donors, but the majority will never give again to ALS. Thus is the reality of fundraising. What will be important is how the money is spent.

Donating as Investing

“Under the leadership of our Board of Trustees, we are putting a decision-making process in place to address how this money will be spent. This is isn’t a matter of spending these dollars quickly—it’s a matter of investing these dollars prudently to achieve maximum impact in our quest to help people living with the disease and those yet to be diagnosed,” said Barbara Newhouse, President and CEO of The ALS Association in a press release yesterday.

Putting money into a charity is making an investment in it. The returns I get from the investment are the good feelings of having made the donation and the support for an entity that will have a positive impact on a person or a group of people. Just because I do not make money from a donation does not mean I should treat it in the same manner with which I spend and invest the rest of my money.

Imagine a stock market challenge where you had to either invest $100 in a stock because everyone else is doing it. Would you follow through? I suspect many more people would ask questions, invest elsewhere or not participate. That is what the Ice Bucket Challenge feels like to me. I want the money that I put into a charitable cause to be a prudent investment.

When it comes to the ALS Association, I am not very certain that is the case. I know very little about the state of ALS research. As best I can tell, little progress has been made in terms of slowing down the progress of ALS once a person has it. That may be due to the fact that not enough funding is going into research and development for new treatments. It also might be because we do not have the present scientific capacity to achieve a breakthrough on ALS treatment. There are countless possibilities, but all converge on my not knowing if my $100 is a good investment.

What I do know is that giving to disease specific charities is not an optimal decision. As Felix Salmon argued in Slate, money for health should probably be coordinated so that it is invested effectively.

fundamental medical research should be coordinated sensibly, on a national level, by the NIH, or even at a global level. Having a grab-bag of disease-specific charities competing against each other for research talent is extremely unlikely to result in an optimal allocation of medical resources.

An infographic from VOX compared the amount of money raised for specific diseases verses the number of people killed by the disease. It is no surprise that breast cancer raised roughly five times more money than heart disease, despite killing less than 1/10th the number of people each year. Comparing the number of people who die each year is not the best way of comparing diseases, but it gives one look into the burden. What it does illustrate is that money goes to issues based on popularity, not need or efficacy of investment.

Credit: Vox

Credit: Vox

On the other hand, there are examples where I know my $100 will have greater impact. GiveWell researches charities to determine whether their programs have a high impact on the people served. It sets a pretty high bar for recommendations as compared to other charity raters. Charity Navigator, GuideStar and other charity rating websites use formulas that depend on number of board members, public tax forms and listed program info to make recommendations. Impacts are starting to be a part of their measures, but organizations need to only publish impact reports. No work is done to determine if the reports are accurate or if the impacts are significant and cost-effective.

One important wrinkle in GiveWell is that it makes recommendations based in part on organizational need. When GiveWell decided to stop recommending the Against Malaria Foundation as a top charity it was because of the amount of money the organization had raised. Right now, only three charities are listed as “evidence-backed, thoroughly vetted, underfunded organizations” by GiveWell. They are GiveDirectly, the Schistosomiasis Control Initiative, and Deworm the World Initiative (led by Evidence Action). There are questions to be asked about what constitutes impact and whether the methods used by GiveWell are the best way to determine giving. Despite having such concerns, this is the closest I can get to knowing that my money will be invested well.

Clever Innovations

The popularity of people sharing videos of doing the challenge to raise awareness for ALS has led to some interesting innovations. From Patrick Stewart writing a check and drinking out of a highball glass to Orlando Jones pouring bullet shells on his head, the challenge has garnered its fair share of commentary and tweaks. ALS continues to be the dominant force behind the challenge, but it was not originally about a specific disease. The challenge was about giving to charity until friends inspired by former Boston College baseball player Pete Frates. They successfully galvanized their networks, starting largely in the Boston area, to participate, ultimately leading the campaign to spread beyond the US.

A notable innovation comes from India. One woman was inspired to come up with the rice bucket challenge. It is rather simple, take a bucket of rice and give it to someone in need. The Hindu, a national newspaper in India, reports that people are starting to take up the challenge started by Manju Latha Kalanidhi of the city of Hyderabad.

Where Will I Donate?

My $100 went to Evidence Action. I picked them for two reasons. First, I know my money will have high impact. Second, another part of its programming is chlorine water dispensers to treat water for drinking and cooking. Given the fact that the challenge has caused me to think so much about water access, I wanted to make an effective donation towards clean water. Since I believe that untied giving allows organizations to spend my money in a way that is most effective, I did not specify where my $100 should be spent by Evidence Action.

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About Author

Tom Murphy

Tom Murphy is a New Hampshire-based reporter for Humanosphere. Before joining Humanosphere, Tom founded and edited the aid blog A View From the Cave. His work has appeared in Foreign Policy, the Huffington Post, the Guardian, GlobalPost and Christian Science Monitor. He tweets at @viewfromthecave. Contact him at tmurphy[at]humanosphere.org.