A Better Ice Bucket Challenge

The New Yorker, Sept. 5, 2014


BY MICHAEL SPECTER

This has been a summer of sustained outrage: tenth-century zealots committing unspeakable atrocities in Syria and Iraq; a season of violence and hate in Israel and Gaza; and, in Ukraine, the invasion of a sovereign nation by a power-mad autocrat. There has, however, been at least one bright spot on the human frontier: the “ice-bucket challenge,’’ which so far has raised more than a hundred million dollars for the A.L.S. Association, which supports research and care for those living with amyotrophic lateral sclerosis, better known as Lou Gehrig’s disease. Last year, the organization raised less than a quarter of that sum.

Unless you spent the summer in Antarctica, the mechanics of the challenge are no doubt familiar: dump a bucket of ice water on your head or make a donation—most people do both—and then challenge others to do it, too, and post it all on Facebook or some other social-media site. It has been a brilliant campaign, an ever-changing video chain letter, quick, easy to understand, a way to feel good about yourself while dripping, briefly, in ice water during the summer’s hottest days.

George W. Bush did it, and challenged Bill Clinton to do it, too. So did Gisele Bündchen. Matt Damon, who has long been committed to easing sanitation problems in the developing world, used toilet water. Bill Gates’s challenge was very Bill Gates: to drench himself, he designed a new contraption. According to the BBC, more than two million ice-bucket-related videos have been posted on Facebook, and twenty-eight million people have uploaded, commented on, or liked ice-bucket-related posts. Justin Bieber’s video, on Instagram, has more than a million “like”s.

It would seem churlish, then, to argue that all of this cheerful decency has been misplaced. A.L.S. is a horrible disease, causing intense suffering to its victims and to all those who love them. In a world with unlimited resources and bottomless generosity, A.L.S. research would deserve ten, even twenty times the money that it has just received. But we don’t live in such a world. And, while most people are repulsed by the idea, when we spend money on saving and prolonging some lives, we are making judgments about how much those lives (and others that we don’t try as hard to save) are worth.

Are people participating in the ice-bucket challenge because it is about A.L.S.? Let’s say that the meme had been devoted to fighting breast cancer, unsafe drinking water, Huntington’s disease, or Alzheimer’s. Would fewer people have participated? I doubt it. Once again, let me stress that I don’t think it is possible to question the good intentions of those who have anted up for A.L.S. But outcomes are another matter.

Ever since the nineteen-eighties, when ACT UP demanded (and received) increased focus on and money for AIDS treatment and research—which, until then, had been relatively neglected—medical funding in the United States has been based as much on who is lobbying for which illness as on the impact of the disease. Particularly in the age of the Internet, people often confuse what is right with what is popular or “viral.” Richard Posner made this point best, in “Economic Analysis of Law.” “The true utterance,’’ he wrote, is like the “brand of beer that commands ninety-five percent of the market and the false brand only five percent.”

But does it? Every life has equal value, but every cause does not. It’s estimated that A.L.S. kills more than a hundred thousand people a year, worldwide. Malaria kills at least five times that many; a million people die from tuberculosis. It should also be noted that people with TB or malaria can be treated, and cured, for a small fraction of the cost of treating somebody with A.L.S. As the philosopher William MacAskill recently wrote, “All people have an equal right to a happy, flourishing life; but some ways of spending money help more people, and help them to a greater extent, than others. This means we need to have a conversation about what the most effective ways of donating are.”

That is a conversation that almost nobody wants to have. In 1993, the World Bank came up with a new way for public-health officials to calculate the relationship between disability and the value of life. In the bank’s annual development report, economists focussed, for the first time, on the concept of the “disability-adjusted life year,” or DALY, a measure that has come to serve as the standard for how to assess the burden of a disease. Previously, the impact of an illness—cancer, the common cold, and everything in between—had usually been evaluated on the basis of how likely it was to kill you.

But life without good health also carries enormous costs for individuals, families, and societies. The disability-adjusted life year combines years of potential life lost owing to premature death with years of productive life lost to disability. Blindness is an example of a health problem that, while not fatal, can dramatically reduce one’s quality of life or ability to function within society. Alzheimer’s disease is another. (And so, of course, is A.L.S., a degenerative disease that destroys motor neurons and robs its sufferers of voluntary muscle movement, sometimes over years, often virtually paralyzing them before they die.)

The DALY metric has flaws, but it does make rough comparisons possible. The drug Riluzole, for example, slows the symptoms of A.L.S. and, on average, extends a patient’s life by three months. In the United States, that costs about fifty thousand dollars and would provide, by the World Bank’s standards, one disability-adjusted life year. Yet, as MacAskill points out, if we spent the same fifty thousand dollars on bed nets to prevent malaria, it would buy five hundred times as many life years by preventing the deaths of children.

By all means, keep dumping those buckets on your heads, and keep writing the checks. Occasionally, though, it might be worth sending them to an organization that fights malaria, or some other disease that threatens the lives of tens of million of people each year. The videos, the icy screams, and the crazy challenges will be just as much fun.

Michael Specter has been a staff writer at The New Yorker since 1998, and has written frequently about AIDS, T.B., and malaria in the developing world, as well as about agricultural biotechnology, avian influenza, the world’s diminishing freshwater resources, and synthetic biology.

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