5.- IíVE HAD IT WITH ICE BUCKETS.

 

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Amyotrophic lateral sclerosis (ALS, or Lou Gehrigís disease) is the disease of the moment. Not because itís the most important medical problem today, but because itís got a clever bit of marketing that got lucky and went viral. Kudos to the ALS Associationís ad campaign person. The ice-bucket gimmick has nothing to do with ALSóyou could ice-bucket rectal cancer just as logically. Maybe more so, in fact, given most peopleís physiological response to a couple gallons of ice-water. But hey, for whatever reasons, it has worked brilliantly. But Iím not dumping water on my head and Iím not writing the ALS Association a check. Giving money to biomedical research is like loaning Bill Gates busfare.

Thereís a long list of people who could be offended by that position, so before I make my case, a few disclaimers:

First, I have great empathy for patients with ALS and their families and loved ones. Itís an awful disease and I hope a cure or at least an effective treatment is found. Soon. I am all for curing ALS. Also, the ALS Association is a fine charity. According to Charity Navigator, they have a high degree of transparency and use only a small percentage of their money for administrative costs. Also, I donít mean to make those who have already given to ALS feel bad or misled. Thereís always a benefit with an act guided by conscience. Iím just going to make the case that the charitable bang/buck is small.

Finally, I feel for scientists. I recognize that funding for the National Institutes of Healthóthe major federal agency for biomedical researchóhas been cut this year. But still, I donít see biomedicine hurting seriously for money. I think that of all the industries that are working with tighter budget constraints, relatively speaking, science is not feeling the most pain, and offsetting its budget cutbacks is not going to have much effect on how soon a great new drug for ALS is found. I love science because itís cool. But as charity goes, I think it is a pretty low return on investment. Hereís why.

I study biomedicine as a social enterprise. I look at it in the context of its history and in the context of contemporary society and culture. The majority of breakthroughs in basic science and almost all translations of basic science into new drugs and other therapies occur in the top university medical schools. I happen to work at one of them; the other biggies include U.C. San Francisco, Harvard Medical School and associated Boston-area hospitals, Baylor, Memorial Sloan-Kettering, Michigan, and a few others.

Science is kind of like a country club, in that itís hard to get in and those who do have money. In order to enter an elite science building, you probably have to get past a security guard. Inside, there is wood paneling, lots of glass, gleaming chrome, polished floors. Itís like Google, only with worse food. If your building does not look like thisóif itís more than 20 years oldóthere is probably a fundraising campaign to replace it with something swankier.F:\ice.jpgF:\ice.jpg

It looks corporate because it is corporate. A lab is basically a business. Principal Investigators (PIís, i.e. faculty lab heads) are entrepreneurs. Their principal role is development; i.e., raising money. The company staff consists of graduate students, post-docs, and technicians, and however many administrators you can afford. Itís a for-profit business, in that all or part of the PIís salary comes from grants. Often, PIís also literally run companies on the side; a PI without a little start-up is ever so slightly suspect, as though sheís perhaps not quite ambitious enough for the big leagues. A cut in federal funding means that competition for grants will be stiffer. But the elite schools, where most (not all, I recognize) of the most fundable grant applications come from, have ďbridge fundingĒ to help such investigators. The system can absorb some cuts.

The scientific community as a whole is rich, white, smart, and obviously highly educated. Getting one of these PI jobs takes brains, dedication, and in most cases, a good family background. Many scientists have parents who were scientists, and most come from middle- to upper-middle class backgrounds. It helps a great deal to be white. Every basic science department in my school cites diversity as one of its weaknesses. For a variety of reasons, itís really hard to get to grad school if youíre black. I believe this to be mostly a failure of our education systems before grad school: basically, as a society we have decided to stop educating poor kids. My school makes a good effort to accept and nurture minority students. It just doesnít get very many.

Those who do get into grad school have their schooling paid, get health insurance and a stipend of $30,000 a year or more. Post-docs make significantly more and starting salary for a beginning faculty member is north of $100,000, plus a start-up package of half a mil or more to get your lab going. Science is full of rich prizes, for best student paper, best article in a journal, best investigator under 40, best woman scientist, lifetime achievement, and so on: these can range from a few thousand to a million dollars. The prize money comes from professional societies, which run mainly on dues from scientists, and from private companies interested in developing science. In short, scientists have money to throw around.

Giving money ďto ALSĒ feels good, but what does it actually buy you? Say a scientist has a gene or a protein and she thinks itís the coolest thing since canned beer. But to work on it, she needs money. So she scans the grant opportunities and finds a disease she can plausibly link to. Letís say itís ALS. She dolls up her little geeky research project in a little black dress and stilettos, with an up-do and some lipstick, hits ďSubmitĒ on the NIH website and sits back and waits for half a year for her funding score. The budget cuts mean that the funding cut-off moves down a few points, say from 25 to 20. Her application has to be in the top quintile to win. The ice bucket money, though, means she can apply to the ALS Association and have another chance. It effectively raises the cut-off again, back to 25 or even 30. Thatís the impact of all this feel-good pop charityóa few percentage points on the funding cut-off.

The standard argument is that research needs to move forward as fast as possible: more grants=faster cure. Thatís not obviously true. Iím not aware of any studies that examine that hypothesis; itís simply taken as self-evident. If it is in fact true, the effect will probably be small. It is unlikely to bring new people into science. Most of the extra funding raised by the ice bucket challenge will go to people already working on ALS-related research. And again, as tragic as ALS is for those who live with it, itís not the most dire medical issue facing us today.

For all these reasons, Iím interpreting the ice-bucket gimmick as a general challenge to give to a worthy charity. Itís so easy to forget to give back to the community. Weíre all struggling financially in our own way, so we forget how rich we are in the bigger picture. All these ice buckets reminded me of this. Iím hardly rolling in dough, but I can find a hundred bucks. So while Sarah Palin and Patrick Stewart and everyone else is apparently writing checks to ALS, I gave $100 to the East Baltimore Community Development program of the Living Classrooms Foundation.

Baltimore, a city of 620,000, has a poverty rate of 25%. Thatís about 150,000 people. Take the bottom quarter of them and you have more people in truly grinding poverty in one city than have ALS in the entire country.

And best of all, there is already a cure for poverty: money. Money well spent, of courseóon education, nutrition, counseling, childcare, transportation, career guidance and training. My C-note could buy lunch for 20 kids. It could buy chalk for a hundred classrooms. It could enable a single mom to take the bus to work for a month. If transparent, responsible, effective non-profits like Living Classrooms had $40 million, they could lift an entire neighborhood out of poverty. That would mean less gun violence, fewer murders, less drug use, more economic development for my city. Maybe one of those kids will go to college, get interested in science, and apply to grad school.

So hereís my ďice-bucketĒ challenge: skip the bucket, let biomedical research take care of itself, and donate to an underfunded charity that will do some direct and long-term good.

[Note: I've had many positive comments on this post but one negative one keeps coming up, so I want to address it. A few people have felt it makes those who give to ALS feel stupid or duped. Not my intention at all. I've had it with ice buckets, not ice-bucket donors. My criticism is of a system, not individual people. I've added a line to the disclaimers to address the ALS donors, who obviously are acting with good intentions.]

Nathaniel Comfort is a professor in the Department of the History of Medicine at The Johns Hopkins University. Comfortís books include The Science of Human Perfection: How Genes Became the Heart of American Medicine (Yale, 2012), The Tangled Field: Barbara McClintockís Search for the Patterns of Genetic Control (Harvard, 2001), and the edited volume,The Pandaís Black Box: Opening Up the Intelligent Design Debate (Johns Hopkins, 2007). This article is reproduced with permission from his blog Genotopia.

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