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The ALS Breakthrough Does Not Invalidate Criticism of the Ice Bucket Challenge

29/07/2016 12:27 | Updated 29 July 2016

In summer 2014, a social media campaign successfully encouraged millions of people to dump buckets of ice-cold water over their heads to raise awareness for Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's disease. Millions of people participated in the "ice bucket challenge" and millions of dollars were donated as a result. While the campaign attracted popularity around the globe, critics were largely dismissed as grumpy, small-minded and heartless party poopers.

And rightly so, if one is to believe this week's reporting on the discovery of a gene responsible for the disease. "It is often easy to dismiss viral charity campaigns as slacktivism" writes Nicky Woolf in the Guardian, echoing various other comments. "A breakthrough discovery bankrolled by 2014's ALS ice bucket challenge may give the lie to that cynicism."

But does the ALS breakthrough really invalidate all criticism brought forward two years ago? After all nobody claimed that more than €100 millions donated to ALS charities would remain entirely without any impact (although examples of similar viral charity campaigns that had little to no impact are not unheard of).

It is undoubtedly a good thing to raise money and public awareness for diseases that are rare and therefore do not attract sufficient research funding. Nonetheless, the concerns that were phrased in 2014 remain valid. A key problem is what Cambridge researcher William MacAskill referred to as "funding cannibalism". Rather than stimulating additional donations, much of the money that went to ALS charities would have been donated anyway. It might have benefited equally or even more urgent causes. And it might have been given to equally or even more efficient charities.

This is not to suggest that ALS is not an important cause or that ALS charities are wasting the donations entrusted to them. However, the problem with the campaign (and with hashtag activism quite generally) was that few participants bothered to think about such questions as they devoted all their attention to what was essentially a wet T-Shirt contest carried out on social media. Similarly, most news organizations chose to mainly focus on the admittedly very entertaining videos that emerged.

However, there were a range of issues worth looking into a bit further, both regarding the urgency of the cause as well as the efficiency of the organisations benefitting from the campaign.

In summer 2014, the biggest challenge to global public health was an Ebola epidemic in Western Africa. Three entire countries were affected by what the US Centre for Disease Control and Prevention (CDC) labelled the largest outbreak in history. Much like ALS, there are no vaccines or specific treatments for Ebola. But unlike ALS, Ebola has the potential to devastate entire countries. In summer 2014, thousands of West-Africans contracted the virus and died within months. The disease wiped out entire villages. It wrecked the economies of Liberia, Sierra Leone and Guinea - states that were struggling even without Ebola. And with prices for basic foods skyrocketing as a result, even survivors of the epidemic were threatened by its secondary effects.

Containing Ebola outbreaks of such magnitude requires a major and cost-intensive short-term effort. Every person that might have contracted the virus has to be tracked and quarantined. Entire neighborhoods might have to be sealed off. The affected countries' flailing health systems were overwhelmed. However, in spite of the major loss of life and the risk of the virus spreading even further, international actors like the World Health Organisation (WHO) got involved rather late. Not least, because they were massively underfunded.

African social media campaigns devoted to the fight against Ebola such as the "soap bucket challenge" failed to gain relevant global attention. As Abdul El-Sayed, professor of epidemiology at Columbia University, quite aptly put it, the term "gone viral" continued to have a very different, much less modern connotation for Ebola sufferers.

Meanwhile the ALS Association that evolved as main beneficiary of ice bucket challenge donations deserved a bit more scrutiny as well. By and large a sound and trustworthy organisation, the remuneration of its senior staff did seem a bit disproportional. In 2013, it had a total budget of $29 million. According to its tax record, the charity's boss Jane Gilbert earned $339,475 in that year. Seven other employees earned between $100,000 and $200,000. One might argue that such salaries need to be paid in order to attract qualified candidates. However, to put the salaries into perspective: The CEO of Oxfam, who leads an £360 million organization whose operations include a 700-branch national shop network as well as major emergency responses, only earned £119,560.

Angela Merkel, the German chancellor and arguably the most powerful women in the world, earned €247.200. This was nearly €10,000 less than what Gilbert received. When Merkel's contender in the 2013 federal election campaign suggested that the German chancellor is underpaid, he caused a minor scandal. And he faced a major backlash from the same traditional and social media that a year later almost univocally cheered for the ice bucket challenge.

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