ALS: Kick The (Ice) Bucket

by Kang Yi Xi (15S03N) and Myko Philip (15A01B)

Until the ban imposed just this morning, allegedly after a student fractured his/her collarbone, RI was in the grip of the Ice Bucket Challenge fever. The premise of the challenge, propagated by the ALS Association, is simple: if you are challenged, you are obligated to pour a bucket of ice water over your head, failing which you must make a $100 donation to a charity focused on helping those who afflicted by ALS. The campaign has been so effective that as of three days ago, the Association has received a staggering 1900% boost in funding from last year’s relatively paltry $2.1m. It is mildly comforting to know we have not forgotten the outside world in spite of the imminent major exams. In fact, one of us was challenged over the weekend by a friend – this, of course, amidst the general bangarang that is CCAs challenging entire other CCAs. But fun though this may seem, it might be prudent and worthwhile to take a step back and consider the broader implications of the challenge.

Those who have been following journalistic sources on the subject of the Ice Bucket Challenge will know that it has already met with its fair share of detractors. Columnist and sports editor Noah Frank has declared that ‘hashtag activism is not real activism’, while Californians are up in arms over the amount of water wasted amidst a crippling drought in their state. Without discrediting the amount of money that this ingeniously well-calculated campaign has raised for an erstwhile invisible cause, other detractors have also wondered why activism these days has to be served up with a side of high-profile, self-congratulatory egotism. A survey has found that almost 50% of those taking the challenge do not donate to the ALS Association or to other organisations fighting the disease, calling their motives for doing the challenge into serious question. Make no mistake, these concerns are all valid in their own right and worth ruminating on. However, what we consider far more disturbing is the fact that raising funds for ALS in a manner predicated on having fun while doing good may divert too much attention away from equally — or more — important but less visible causes. While this is the inevitable effect of any successful media advocacy campaign, perhaps we as donors also have a responsibility to ensure that our money is going to the right causes, rather than the most prominent ones.

People are no less deserving of help or empathy if, in helping them, you do not have fun. Realistically, given your financial constraints, you should weigh up individual causes’ pros and cons instead of heedlessly throwing your money at particular organisations.
People are no less deserving of help or empathy if, in helping them, you do not have fun. Realistically, given your financial constraints, you should weigh up individual causes’ pros and cons instead of heedlessly throwing your money at particular organisations.

Though charities and social advocacy organisations often trumpet about the importance of raising awareness and funds, there comes a point beyond which the sheer amount of awareness or funds raised for a particular cause becomes excessive and detrimental to the global community as a whole. In an insightful piece, William MacAskill — the founder of 80,000 Hours, an organisation that espouses ‘effective altruism’ — talks about how the much-vaunted Ice Bucket Challenge has, in fact, led to ‘funding cannibalism’. What this pithy epithet means is that other charities can expect to receive less donations as a result of people’s money having been diverted to the ALS Association.

Why is this the case? The fight for space on people’s newsfeeds and on the front pages of newspapers is a ruthlessly competitive zero-sum game, in which the sheer amount of focus directed at a specific cause inadvertently turns people’s eyes away from other issues, and in which few beneficiaries will ever admit that they have received sufficient donations. Besides this and the fact that everyone only has so much spare income to donate, the problem possibly arises from a psychological phenomenon known as ‘moral licensing’. MacAskill cites how researchers have found that test subjects who have done a morally commendable deed have an increased likelihood of doing something ethically questionable afterward; the warm, ‘feel-good’ rush we get after donating to a cause (and/or pouring bone-chilling liquid on ourselves) may leave us with significantly less drive to engage in further altruistic endeavours, even though the necessity of the latter has far from diminished. This particular quirk of our brains may not be as salient in the Rafflesian context, however, given how dedicated many of us are to our various service learning causes. In MacAskill’s opinion, what makes this diversion of funds more worrying is the fact that the net benefit reaped from putting a dollar into the ALS Association may be substantially outstripped by that from putting that dollar into some other cause. This then begs the question of whether fighting ALS and providing support to its sufferers is a more deserving cause than, say, combating poverty in developing countries.

This is compounded by the fact that technologically-reliant research, as ALS research is wont to be, is an extremely capital-intensive venture, and a cure would probably fail to materialise in the absence of copious amounts of research funding. To clarify, this is not to say that research is not worth financing under any circumstances; a study’s exorbitant price tag can be readily justified if scores of people are able to benefit from its results, as in the case of cancer research. And ALS sufferers have spoken up about what it means to have ALS, highlighting the potential good that this research could serve.

However, it’s worth pointing out that the research towards finding a cure for ALS has hitherto been notably ineffective. The ALS Association has already pumped a prodigious $99 million into its research in the hopes that it will strike gold in its quest for viable therapies, but only marginal victories have been achieved thus far. Aysha Akhtar, a neurologist who works with ALS patients, argues that the Association has not used its funds to further research in the right direction, pointing out that despite the fact that ‘ALS is a uniquely human disease’, the Association’s research has persisted in creating animal models for treatment, which leads to experiment results that are rarely transferable to human trials. Pragmatically speaking, when it comes to ALS, even if a miracle drug were to be discovered and formulated, the fact that the worldwide incidence of ALS is a mere 2 per 100,000 persons means that it can hardly be deemed as a cost-effective measure.

Moreover, some detective work by a concerned netizen has brought to light the suspicious fact that the ALS Association spent a meager 7.71% of its revenue on research in 2012, with the rest going to fund-raising, administrative costs and the dubiously-titled ‘Other Programme Activities’. What little money actually goes towards research on a cure for ALS is thus being thrown at the optimization of animal models for the testing of drugs that are generally ineffective when applied to humans. Although it is true that funds from the ALS Association have contributed to landmark findings like the identification of ALS-linked genes and a clinical trial for ISIS-SOD1, a novel drug targeted against the disease, a truly viable treatment appears to be quite some research — no doubt requiring even more funding – away. To be fair, the ALS Association has diligently advocated — and effected — changes in national policies that favour ALS patients, and is a purveyor of ‘a wide variety of community services’ aimed at aiding sufferers and their families. Nevertheless, it is incontrovertible that ALS is and will likely continue to be a negligible source of mortality and disability worldwide.

In contrast, organisations like the Against Malaria Foundation have been lauded by well-established watchdogs such as Giving What We Can and GiveWell as being highly cost-effective enterprises — GiveWell’s evaluation has estimated that every $3,400 donated to the Against Malaria Foundation can save a single life, and a study has revealed that malaria killed a minimum of 1.2 million people in 2010 alone — a disturbing statistic indeed.

While it may seem terribly callous to make a value judgement that prioritises the lives of a hundred African children over that of an ALS sufferer, when confronted with the harsh realities of the world — namely the scarcity of our time, energy and monetary resources — we may be effectively forced into making a Hobson’s choice, in which adopting such a utilitarian perspective rather than hopping onto the ALS bandwagon might be the most logical course of action. It may be lofty to believe that all causes dedicated to helping others are equal in import, and that no human lives should be put on a pedestal above others, but such well-meaning sentimentality may only lead to a grave misallocation of resources, which may fail to engender practical results. Sure, ALS might have been a tremendously neglected cause just a few months ago, but, by now, it has already garnered more than its share of recognition; we feel there is no real need to continue pushing the proverbial snowball any further.

A recent dispute regarding Macmillan Cancer Support’s attempt to hijack the Ice Bucket Challenge and the opprobrium that the organization has raised may seem to be a humanistic outcry but in fact blinds us to the fact that cancer still matters and to many people, including ourselves. Paradoxically, some timely analysis has shown that the amount that people donate to charities tackling a particular disease is far from proportional to the severity of that disease. Perhaps we should question the validity of the criteria we use to judge the desirability of a cause — shouldn’t we refrain from using the amount of publicity and media hype a cause has managed to generate as a barometer to evaluate its importance? In fact, we can attempt to counter this trend by actively drumming up support for neglected yet dire causes that we believe in.

We aren’t denying the grief and suffering caused by ALS — as comparatively healthy individuals, we do concede that we are not in a position to fully comprehend the adversities endured by both patients and their caregivers. We are just of the opinion that, when one crunches the numbers, other causes may be more urgent and alarming at the present moment. Above all, though, this entire debate highlights how critical it is for potential donors to conduct ample research into beneficiary organisations that they have in mind.

All in all, while we applaud the ALS Association for having raised awareness of a heretofore little-known ailment, we feel that blindly subscribing to the herd mentality that has carried the Ice Bucket Challenge so far might be counterproductive to the aims of charity. Rather than promoting goodwill, this challenge encourages the mentality of donating if and when it benefits us, and only when our efforts are visible. Taken at its worst, the challenge may promulgate self-centeredness rather than selflessness, and could breed a pernicious culture of donating only to the charities that enable us to flaunt our apparent generosity. It thus becomes an untenable and unsustainable model for future charities. Instead, we believe that comprehensively researching different charities and donating to the ones that will maximise the power of your dollars is a more ideal way to cultivate prosperity around the globe, and that for any cause you believe in, you should do more than a mere publicity stunt and make more than a token donation. It takes courage to reject the Ice Bucket Challenge once you have been tagged, but you will be doing so on solid grounds if you feel compelled to donate to more pressing and under-funded concerns instead. Ultimately, idealistic though it may be, we need people who genuinely are concerned and engaged with others’ sufferings on a level deeper than the intermittent prompts from capricious social media.

Update: While we criticised the state of the ALS Association’s expenses in 2012, the organisation has made considerable changes to its spending practices over the past two years. A student pointed out that according to its financial statement as of January 31, 2014, the ALS Association has allocated its spending in a more efficient manner, channelling less money toward administration, for one (it has cut the percentage spent on this from 10.54% to 7%).

fye2014

 

If you want to make a contribution to ALS, please visit:

http://www.alsa.org/ and click on the red “Donate” button found in the top right.

Here are some of the top charities, as determined by a few well-regarded charity evaluators.

http://www.givewell.org/charities/top-charities

http://www.givingwhatwecan.org/top-charities

http://www.charitywatch.org/toprated.html

If you wish to lend a hand to those in need in Gaza, you might want to consider donating to UNICEF/the UN Relief and Works Agency at: http://www.unrwa.org/donate. The “Donate” button is red and found at the top right

You can help Syrian refugees by donating to the UN Refugee Agency:

http://donate.unhcr.org/international/syria

If you want to look closer to home: you can look for people involved in service-learning or community-service groups such as ISLE or THI. A proactive step in the Rafflesian community to find out more about such causes can go a long way.

 

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