[Edit: 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.]
I’ve had it with ice buckets.
Amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease) is the disease of the moment. Not because it’s the most important medical problem today, but because it’s got a clever bit of marketing that got lucky and went viral. Kudos to the ALS Association’s ad campaign person. The ice-bucket gimmick has nothing to do with ALS—you could ice-bucket rectal cancer just as logically. Maybe more so, in fact, given most people’s physiological response to a couple gallons of ice-water. But hey, for whatever reasons, it has worked brilliantly. But I’m not dumping water on my head and I’m not writing the ALS Association a check. Giving money to biomedical research is like loaning Bill Gates busfare.
There’s a long list of people who could be pissed off at 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. It’s 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 don’t mean to make those who have already given to ALS feel bad or misled. There’s always a benefit with an act guided by conscience. I’m 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 Health—the major federal agency for biomedical research—has been cut this year. But still, I don’t 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 it’s cool. But as charity goes, I think it is a pretty low return on investment. Here’s 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 it’s 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. It’s like Google, only with worse food. If your building does not look like this—if it’s more than 20 years old—there is probably a fundraising campaign to replace it with something swankier.
It looks corporate because it is corporate. A lab is basically a business. Principal Investigators (PI’s, i.e. faculty lab heads) are entrepreneurs. Their principal role is development; i.e., raising money. The company staff consists of graduate students, postdocs, and technicians, and however many administrators you can afford. It’s a for-profit business, in that all or part of the PI’s salary comes from grants. Often, PI’s also literally run companies on the side; a PI without a little start-up is ever so slightly suspect, as though she’s 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 “bridge funding” 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, it’s really hard to get to grad school if you’re 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 doesn’t 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. Postdocs 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 “to ALS” feels good, but what does it actually buy you? Say a scientist has a gene or a protein and she thinks it’s 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. Let’s say it’s ALS. She dolls up her little geeky research project in a little black dress and stilettoes, with an up-do and some lipstick, hits “Submit” 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. That’s the impact of all this feel-good pop charity—a 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. That’s not obviously true. I’m not aware of any studies that examine that hypothesis; it’s 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, it’s not the most dire medical issue facing us today.
For all these reasons, I’m interpreting the ice-bucket gimmick as a general challenge to give to a worthy charity. It’s so easy to forget to give back to the community. We’re 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. I’m 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%. That’s 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 course—on 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 here’s my “ice-bucket” 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.
10 thoughts on “A little cold water”
The ALS Association did not come up with the ice bucket challenge. (See this, among other sources)
Woody Guthrie did not have ALS, he had Huntington’s Disease.
Nice catch. Fixed. Dang, normally my music trivia memory is reliable, but I should have double-checked.
I’ve said it many times over the last several weeks as the Ice Bucket Challenge has gained traction and people have started complaining about it – there is no way to complain about it without sounding like an insensitive a-hole … especially to people who have ALS or have loved ones who do.
Even when people add the “I feel for ALS patients and their families” or “I know ALS is a horrible disease” bit, it still comes across like this:
“ALS isn’t an important enough cause for all this attention” because deep down, that is what this means. You feel that there is something else deserving of more attention than ALS research or patient care. In fact, you even say that.
How freaking arrogant of you. Sure, it’s less common than say certain types of cancer, or Alzheimer’s, or whatever other pet disease you have – but speaking from experience of watching a loved one slowly lose the ability to do anything for himself, to have your mother too stressed to leave the house for fear that once again he will fall through the glass screen on the fireplace when she finally leaves the house to run errands, to sit by his hospital bed when he has a gastric feeding tube surgically installed because soon he wont be able to consume food through his mouth without fear of choking to death, only to end up in the hospital again a week later because he contracted pneumonia from previous hospital and almost dies because his lungs are being further compromised from the already limited capacity they now have. Having to help this once proud and independent man to take care of basic functions like getting into the bathroom or bathing. Not to mention the daily activities of feeding him through his tube, breathing treatments which involve hooking him up to a machine that forces him to take deep and painful breaths over and over again so that his lungs don’t fill up with fluid, or the vest that shakes the phlegm out of his chest because he no longer is capable of coughing. To see him have to keep a handkerchief on him at all times because he drools and can’t help it. To never hear his voice again because it has been stolen from him. To know that he will never be able to walk my sister down the aisle, and that there is a good chance he will die before that even ever happens… since the average lifespan after diagnosis is 3-5 years and it’s already been 2.5.
Did you know that because of the money raised from the Ice Bucket Challenge ALS TDI is actually initiating a clinical trial for a promising drug which they were holding off on because of lack of funding? Did you also know that there is only ONE approved drug for the treatment of ALS and even it has a marginal benefit, if any, to the majority of people who take it? Also they are funding a new precision medicine study to prescreen compounds on ALS patient iPSCs, search for biomarkers, and sequence the genomes of affected individuals. Before the challenge they were only able to fund a study with 25 individuals, but now they will be able to enroll hundreds of patients. This is just a sample of the great things that are being done as a result of the Ice Bucket Challenge, and ALS TDI only received a fraction of the money that the ALS Association did.
So sure… go ahead and be annoyed at the viral campaign all you want. Post something even if you feel it is necessary – but before you do think about just exactly what you are saying and what you aren’t saying and what it means to those of us who do think that ALS is a cause worthy of all this attention, who are thrilled that after so many years in the shadows and underfunding and lack of research initiatives finally the whole world has heard about it.
I hear you, and thanks for your comment.
But you are taking personally an argument that isn’t about you, or even about ALS. It’s about biomedical research as a whole, which, as one worthy cause among many, is proportionately overfunded and proportionately helps society’s most advantaged classes.
When was the last time you biked through a boarded-up neighborhood, or attended a memorial service for a child murdered in a drive-by shooting? I do these things (see previous post). Those people and their families–my neighbors–feel pain as well, and because most of them are black, their suffering tends to be ignored, if not treated as second class (viz., Ferguson).
Your pain is real, but so is everyone else’s. Your disease of interest may be small but it still has $80M or more in funding. Do you know the kind of shoestring budget that inner-city charities have to deal with? Eight THOUSAND dollars would be a lot for many of them. And as I say, there is already a known cure for poverty.
So, rejoice in the recognition “your” disease is receiving. I hope ALS finds new therapies or even a cure. But maybe wake up to some of the other injustices and tragedies in our world as well.
I am not going to argue the merits of the “give money to poverty” argument because much like the ALS situation, there isn’t a way to not sound like a jerk (especially on the internet), but I will say that I do support charities which work directly with impoverished individuals in my city by educating and empowering them to achieve their own goals in finances, career development, and life. I also taught many students who grew up in poverty before I went back to school. No I haven’t biked through their neighborhoods… but I don’t bike through my own either because I flipped my bike and it’s broken. And I’m fortunate enough not to have had any students murdered, so no I haven’t been to their memorial either. But I have been to their graduations, and celebrated with them when they got their college acceptances, and kept in touch with them over the years. I can be happy about the attention that ALS is receiving while also being cognizant of things going on in other realms of existence. I don’t understand why you automatically make the assumption that I don’t care about these things just because I care about ALS and got offended about your complaint… the only thing you know about me is what I posted (unless you’ve googled me already). In what world does acknowledging that our situation is sucky in any way diminish the fact that there are other people in equally sucky (if sucky for other reasons) situations?
I would also say that were there to be an “Ice Bucket Challenge” supporting poverty-focused charities I would not be grousing about it – I would be happy for them. Just like I don’t complain about the Susan G Komen Race for the Cure or any other successful charity initiatives.
At the end of the day your response is still saying to me ‘”Your” disease isn’t as important as my concern and is already getting too much attention” and it’s just not something I would ever say to someone. Yes, ALSA may have 80+ million in donations right now – but next year it will most likely be back to what it was previously and the local ALS foundations and support groups will continue to exist on the same shoestring budgets that other charitable organizations have.
All right, we’re learning more and more about each other and evidently you’re interested in real discussion (no I haven’t googled you).
Why do you say:
I say nothing of the sort. In fact, I explicitly DO acknowledge that your situation is “sucky.” Again, this has nothing to do with pitting ALS “against” any other disease. This piece is a critique of biomedicine as a charity. Critiquing biomedicine is what I do–see essentially all my other posts. I do it with the aim of improving it, because it is important and interesting. I’m a gadfly, as Socrates said.
And don’t get me started on Susan G. Komen. Read (or watch) Samantha King’s Pink Ribbons, Inc. and look at thinkbeforeyoupink.org before you defend them.
Good for you, doing so much charity work. We need more of that. Even beyond the biomedical critique, this piece is a call to the many who *don’t* do it, to find something important to them and give.
So again, you’re taking personally a piece that isn’t about you. It’s at the end of *your* day that I’m saying your disease isn’t as important as my concern, not mine, and not that of the many others who this piece touched deeply.
So I wasn’t defending SGK by any means – having gone through the process of setting up a nonprofit previously I have read up on how charities are judged and SGK is imperfect in many ways… that being said I wouldn’t ever complain about how many people are doing Race for the Cure or posting about it on FB because there is a good chance that someone around me is affected by breast cancer and I’m going to look like an ass. A rational discussion about the leadership structure, administrative costs, etc or ways to improve comes across completely differently.
Now you (sort of) attempted to do that but in the process you rag all over the ALS challenge. In general internet vernacular it makes you a “concern troll”.
I also agree with (as a grad student myself at one of those “Elite” institutions you mention) the commenter below… (sub) 30K a year is by no means glamorous, and neither is a post-doc salary. As a 4th year teacher in TEXAS (not known for its fantastic teacher’s salaries) I was making 60K… how many years of a postdoc do you have to do before you qualify for that?
Speaking of funding and how rosy the picture apparently is in regards to grants and such … I was reading an article in Wired this weekend about Tumor Paint and it’s development. This project (which could make cancer surgeries much more effective by causing the cancer cells to glow and allow for rapid detection and removal) grant was rejected by the NCI and others initially because it was seen as too risky and he turned to crowdfunding to pay for the development. He only got NIH funding *after* he had raised $5 million on his own and done a lot of the legwork to prove that his tumor paint did what he said it did.
Now that is for something as “big deal” as cancer which is a huge industry driver in and of itself, and generally something the funding agencies throw money at like toilet paper in the hands of a 14 year old in front of a house. Now we are talking about an orphan disease like ALS, which is on the opposite end of the spectrum and considering how little is known about what causes it, any drug development program is even riskier from the NIH perspective. This is one of the reasons why there is still only one FDA approved drug on the market for it, and it doesn’t even work! Funds raised from this silly viral campaign are going to be able to fund the “riskier” projects that wouldn’t have been funded previously. Sure there are going to be a lot of projects that ultimately are unsuccessful (welcome to science) – but even if just one project finds a drug capable of modulating the patient experience and trajectory the ALS community will consider that a huge win. So when you’re talking about investments here remember you’re talking about people, you’re talking about lives and quality of life – it seems a bit harsh to call it a bad investment.
You make science seem like its some glamorous profession.
The average time to a biology Ph.D. is 7 years, and $30000 a year? Maybe at Yale… because of the high cost of living, but the numbers don’t lie. A grad student makes in the $20000s and is into the late 20s by the time they finish. At least my university doesn’t offer full health insurance coverage. Part of that measly 20something thousand a year goes into health insurance, and that is not counting co-pay. Nonetheless, I won’t complain about that. The complaint is with you thinking that $30000 for a 29 or 30 year old is something awesome. And post-docs do make significantly higher. Depends on what ‘significant’ is. 15000 more than 29k is ‘significant’. But 44K for a person in their mid-thirties with a 7-year Ph.D. working 60 hours a week on average with a less than 1/6 chance of getting a faculty position (that NO, not all positions pay $100k, it depends on the location) and you realize it isn’t exactly paradise. In fact, it is below the median income for an American.
The NIH budget has fallen by more than 20% adjusted for inflation. Hundreds of labs, including the lab I am working in, lost funding and so grad students like me have to teach at our university while simultaneously having the pressure to troubleshoot experiments, come up with new ideas, publish in elite journals and write & defend a 200 page thesis just to get that pie in the sky ‘significant’ $40K job that you think is so generous. It’s worse for postdocs that have to be fired from their lab for no fault of theirs. Give me a break.
We need more funding for NIH and NSF. I agree that ice bucket challenges are not the way to go, but stop painting the wrong picture about a career in science. The funny thing about all of this – I am reading your article just after reading an article on ‘shockingly’ underpaid jobs. I’ll give you one guess what type of professions were listed in that article.
Thanks for your comment.
So I actually agree with you on most of this. Note that I was in fact discussing the elite basic science programs–those that receive most of the grant money. $30k is actually low for most of them. It’s not that I think young scientists have nothing to cry about–it’s just that they have it less badly off than their counterparts in much of the rest of the university.
I stand by my critique of biomedicine. But I do sympathize with you. No question, academic salaries are way low compared to the wider world, and for the amount of training and dedication required the salaries are criminal. Add to that the tendency toward hiring adjuncts in order to eliminate faculty jobs and you have…a mess.
We are absolutely on the same team as regards the general decline of support for academic work. I’m well aware of how tough it is to make it in academia these days, and I think it’s a crime. It’s astounding to me that during the 20th century we built the single best university system in the world–stealing the honors from the Germans–and we’re now systematically destroying it. Watch this space for critiques of the decline of the American university in future posts.
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