By now everyone knows about the ALS Association’s Ice Bucket Challenge (IBC): it’s a stunt whereby people—including those George W. Bush and many celebrities—get a bucket of ice water dumped on their head to raise money for research on ALS (amyotrophic lateral sclerosis, or “Lou Gehrig’s disease”), a progressive, debilitating, and ultimately fatal neurological malady. As NBC News reports, so far the gimmick has raised a solid $42 million dollars for ALS research. When I heard that, I thought “Great; but that’s really small potatoes for research money.” And the NBC article concurs:
But anyone who thinks that money is going to cure ALS is just dreaming, experts point out.
Yes, it’s a shot in the arm for the ALS Association, which advocates for scientific research to treat amyotrophic lateral sclerosis (ALS), also called Lou Gehrig’s disease after a famous baseball player who died from it. And there’s little doubt it will go to medical research.
“There’s so many ways we can go with these dollars on the research front,” says Barbara Newhouse, President and CEO of The ALS Association. “It’s going to take some thoughtful discussion around the types of research and believe me, since this started, I’m getting requests coming in moment by moment with everybody having their own spin on research. So we’re going to work prudently through a process that gets us to what’s the right use of these dollars.”
But there’s also a more efficient way to raise funding: get Congress to stop cutting the NIH budget—the most likely source of real breakthroughs in curing or ameliorating ALS, since such benefits often come from pure research:
But if you really want to support medical research, get on the phone to your member of Congress and demand a stop to cutting the National Institutes of Health budget, experts say.
That’s because private donations are a figurative drop in the bucket compared to U.S. government funding. NIH pays out $30 billion a year for medical research, compared to about $5 billion raised by philanthropy in 2007.
. . . “If a million people would donate $100 a year for 30 to 40 years, you might get a breakthrough for ALS,” Serody, who uses NIH funds to help support his research into bone marrow transplants, told NBC News. [Jonathan Serody is at the University of North Carolina.] “These flash-in-the pan things that will go away after a few months will not help ALS in the long run. Researchers need dependable money.”
That means year-in-and-year-out support, so researchers can plan their careers and rely on being able to see experiments all the way through. A single $100 donation does little to support that, Serody says.
And Congress has slashed the NIH budget. “Almost no one realizes how dire the research situation is for NIH,” Serody said. Not only has funding not increased to stay up with inflation but it was slashed by 5 percent because ofthe sequester — remember that little budget maneuver that took effect because Congress couldn’t agree on a final budget plan?
In 2010, NIH spent $59 million on ALS research. It’s fallen by a third since then.
But it’s still a good chunk of money, equivalent to more than a year’s NIH funding for the disease. Nevertheless, and I suppose one could have predicted this, there’s religious opposition. I heard this on the morning t.v. news today, and it was verified by an article by the Associated Press (published on that station’s website) that some dioces of the Catholic Church are objecting to the IBC.
Jim Rigg, superintendent of Catholic schools for the Archdiocese of Cincinnati, told the schools in a letter Tuesday to “immediately cease” any plans to raise funds for the association and to instead direct donations to another organization that combats ALS, a progressive neurodegenerative disease also known as Lou Gehrig’s disease that causes paralysis and almost certain death.
The Catholic Church relates the use of embryonic stem cells in research to abortion and says it violates the sanctity of human life. The use of adult stem cells in research is not forbidden by Catholic teaching.
A Roman Catholic diocese is discouraging its 113 schools from participating in the ice bucket challenge to benefit the ALS Association, saying the group’s funding of embryonic stem cell research is “in direct conflict with Catholic teaching.”
The diocese said schools could participate in the ice bucket challenge, but any money raised should be directed to groups like the John Paul II Medical Research Institute in Iowa City, Iowa, which conducts “pro-life driven” research, according to its website.
There are objections in the Chicago Archdiocese as well, as I heard this morning. A spokesnun, Chicago Archdiocese Schools Superintendent Sister Mary Paul McCaughey, appeared on Channel 2 decrying the use of embryonic stem cells. I saw this segment, which also appears on the station’s website.
[McCaughey] told the principals of the 248 Catholic schools in the Chicago area that the ALS Association is “not a good match” for Catholic schools.
“It uses embryonic stem cells for its research,” she said.
What the written report doesn’t say, but which you can see in the video below, is that the sister’s objection is that the use of embryonic stem cells “promotes abortion.” She added that Catholic schools in Chicago could still participate in the IBC, but had to stipulate that the money they raised go to research using only adult stem cells (the ALS Association notes that this is fine).
Click on the screenshot below to go to the Chicago report and the video:
But let us be clear about embryonic stem cells. Their use does not promote abortion. The cell lines used for research are derived from frozen embryos. Where do those embryos come from? During the process of in vitro fertilization (IVF), eggs are harvested from a woman and them fertilized in vitro with donated sperm, often from the woman’s partner. The fertilized eggs are allowed to divide a few times, and then the embryos are implanted, usually several embryos at a time to ensure that at least one implant in the uterus (this is why IVF parents sometimes have twins or even triplets). The rest of the embryos are saved and frozen, just in case the first batch doesn’t work.
The vast majority of these frozen embryos are never implanted, but some are used to generate stem cells that are then cultured. Those cells have enormous potential to cure diseases, grow organs, and the like, as embryonic stem cells are “dedifferentiated,” i.e., they haven’t yet irreversibly specialized into a given type of cell (like a liver cell), and so can be induced to form many different kinds of tissue. There are also adult stem cell lines, most derived from bone marrow, that don’t come from human embryos, and also have huge medical potential.
Since the frozen embryos are the byproduct of IVF, and just languish in liquid nitrogen, they are of no value to anyone unless they’re used for research. Nevertheless, the Catholic Church sees them as humans, even though they consist of only a few cells. And it’s the Church that has severely restricted the use of embryonic stem cells in research. Things have gotten better under the Obama administration, but the number of lines available publicly for research is still limited.
Here we see the Catholic Church, by regarding stored frozen embryos as “people” (“people” who will never be born), impeding medical research that could potentially save millions of human lives. All because of their ludicrous notion that these frozen balls of cells have a soul.
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I shall likely receive backlash for stating thus: this so disgusts me.
It disgusts me on the level of other types of purposeful and intentional killings – and – slayings – by – religion. Read that: I am disgusted by this ––– on the level of the IS’s beheadings.
In no bloodied way can a bunch o’ a few cells, any few cells ––– incl those haploid spermatozoal ones purposefully and intentionally ( and, most especially, by the very hands of those allegedly priestly dudes ) sloughed in the elebenty gazillions Worldwide every single moment ––– be called human or animal. Ever. With or without such a nonentity as is that thingy termed a ‘soul’.
If one has ever lost to amyotrophic lateral sclerosis a much loved human, then ––– as of Journalist James Foley’s mama now ––– you .know. what broken – heartedness is.
Blue
My father and I had a life long contention as to when enjoying life should start. He claimed there will be plenty of time for that when retirement started. 20 years ago ALS robbed him of that. But those last couple of years we truly saw eye to eye and we enjoyed each others company immensely. I know that broken heartedness well.
You won’t get any backlash from me. I’m equally disgusted that millions suffer when something could be done, or potentially could be done, but isn’t, just because of pandering to the ignorance of religion.
I vaguely remember that during GWB’s time there were only ?16 lines of stem cells available for research in the whole country. Medical research is one of the areas that American exceptionalism isn’t a myth and so much good could be done, and so much suffering relieved, if religion kept its self-righteous nose to itself.
And the one-two punch of religion and dumb-ass free-market fundamentalism in politics socks us in the nose yet again. Hooray Ayn-Rand Jesus!!!!!!
“But if you really want to support medical research, get on the phone to your member of Congress and demand…”
The first thing I expect he would do is look in his database and see how much I have contributed to his reelection campaign in recent years.
Even if you were a large contributor, would it matter? Congress (esp. the House) is as impotent as these stem cells are. At least the stem cells could be put to good use if given the chance. Present Congress is beyond help (for now at least).
I believe the objection here comes from the fact that they are in fact “abortions” as understood in the technical sense of these folks. It is an embryo which is not allowed to “continue on its way” because of human intervention. Crazy and sad, but …
But… What?.. This crazy nun can stick her generosity where she likes it. “Oh, we are going to be so caring and mindful and raise money for this worthy cause. BUT it comes with a lesson to learn: the lesson that WE know about the sacrosanctity of god-given life, and we are going to teach you. And you must obey because otherwise you will make God very angry and then we can’t give you our donation money.” And she gets to promote her club-of-the-clueless with its views on television.
F*ck*** b*ll**** crazy people.
Sorry, rant over.
If God is so angry with researchers using supposedly ill begotten stem cells, then wouldn’t it stand to reason that the labs using the adult stem cells would do better?
Gee, it’s almost like their knowledge of basic biology is limited somehow. I wonder why???
But that’s different, see, because it didn’t involve a human!
(I can’t make any sense of the acts/omissions thing either, even on the premisses the other side grants, but there you go…)
The Catholic church is not the only one. Answers in Genesis came out with this blog post two days ago:
http://blogs.answersingenesis.org/blogs/georgia-purdom/2014/08/20/pouring-cold-water-on-the-als-ice-bucket-challenge
And then Ken Ham tries to convince us that Creationism is not an obstacle to the progress of science and technology .
This drives me crazy. At least these people should understand the science and procedures before they become outraged. Promoting abortion! Give me a break! By the time this misinformation gets passed down to regular believers, it becomes even more obtuse and people statt imaging babies being taken from. The mothers to grow organs and ears and such!
An unfortunate memory I have from my childhood (this being one of my first memories since I was 3 years old at the time) was attending a pro-life conference with my parents.
My mom was pregnant at the time. My memory of her explanation for what we were doing there was to “stop mean people from killing babies like the one inside of me.” Whether she intended to convey the message that a random doctor may come and kill my sibling and other babies, I don’t know. There’s a strong likelihood my memory mangled precisely what it was she said; the scary part is that there’s also a pretty strong likelihood that this was exactly the message being conveyed.
Sequestration has had a devastating effect on the research funding at the university where I do research. It is a major public university with a medical and dental school, so there is a lot of medically related research that…well, used to go on here. Some of the floors in my building have gone from labs bustling with personnel (post-docs, grad students, lab techs, undergrads) to virtual ghost towns. I will likely become a victim of this next spring, and as someone approaching 60 this is a scary prospect.
US citizens, please vote in this election cycle. If the Republicans take the senate, this situation is guaranteed to continue for some time and probably get worse.
So sorry to hear this. I knew the sequester did major damage to research fronts, but have never read a first-hand account. I sincerely hope you make it through the spring.
If Republidumbs get control of the Senate and keep the House, we are certainly screwed on many fronts. SCOTUS’ rulings on Citizen’s United and the invalidation of voting rights act and state gerrymandering has struck a lethal blow to our Democracy. Can’t believe all this has happened in the last decade. Scary shit.
The stance that a fertilized egg constitutes a person reminds me of a Babushka doll. I think I’ll refer to it as the Babushka-fallacy from now on.
I always knew it as a Matryoshka Doll. You learn something everyday on this website.
That makes two of us. 🙂
I don’t really understand the ice bucket challenge. I’m told that when challenged, a person has to either pour a bucket of ice over their head, or donate money to ALS research. It seems most people pour the ice. I guess they do both? If it raises money for ALS research, I’m all for it, but it seems rather silly to have posed it as an either/or proposition. Maybe I’m missing something…
Based on a sample of one Youtube video, when passing on the challenge they quite often urge their challengees to do both.
Often? What about the other times?
I am kidding with you. I agree with everything in your post, I just found this particular wording a bit humorous. “Now Ms. Smith, we are going to fertilize your eggs. Would you like us to use your husband’s sperm, or lab technician Steve’s?”
When the woman involved is unmarried and wants to have a kid before it’s too late, the sperm *often* belongs to a 6′ 2″ blond haired, blue eyed, Ivy League graduate. And this is noticeable on the playground.
Yes, I get that. Its still a humorous turn of phrase because ‘often from the partner” can be read to imply ‘sometimes they have a partner they don’t use,’ not just ‘sometimes they don’t have a partner.’
And how does six or seven centuries of the various forms of the Inquisition during which people were tortured by being crucified, burned alive, drawn and quartered, having molten metal poured into their ears and mouths, roasted alive, left to rot in cages entitle the Catholic church to criticize research to fight ALS (a truly ghastly disease). In my thirty five years of teaching I frequently encountered Catholic students who had never been informed of the Inquisition in their Catholic schools. Why should anyone pay attention to Catholic attempts to manipulate what I will call “the rest of us?”
Well on the one hand we could do research to help actual human beings. Or we can pander to a bunch of cells that someday might grow up to become one.
Glad to see that the Catholic church still has its priorities straight.
I had a catholic friend’s mother tell me once that the reason stem-cell research equals abortion is that the cells are “potentially” human. That’s almost like saying every time a couple has sex and doesn’t conceive a child, they are guilty of infanticide because all those potentially human sperm cells never fertilized the potentially human egg. They need to get their priorities and their knowledge of basic biology straight.
” All because of their ludicrous notion that these frozen balls of cells have a soul.”
Well those balls of cells seem to have more of a “soul” than the Catholic Church.
They certainly have the potential to do a lot more good, and be a lot more useful than the Catholic Church.
It cannot be overemphasized that the embryos used as a source of stem cells would otherwise be discarded. Therefore, their use does not promote the production of in-vitro embryos nor affect the abortion rate. These embryos are the byproduct of pregnancy attempts, not the yield of induced abortions.
I’ve never heard the save-the-blastocyst crowd ever denounce in-vitro fertilization even though it results in the routine discarding of embryos. Yet the moment someone grabs an embryo headed for the medical waste container, they howl.
Really? I’ve heard them denounce it. It violates the “sacred act of fertilization outside the natural process of two married spouses fully giving themselves to one another is anathema” or something along those lines. The only thing that surprises me about the whole thing is that they aren’t rallying around labs where these embryos are stored and demanding they be injected into women immediately so that life’s full potential can be realized, allowing God to bring forth good from the darkness.
See <a href ="http://www.catholicworldreport.com/Item/1774/church_teaching_on_in_vitro_fertilization.aspx"this statement from Pope Benedict a couple years ago for a real world example closely resembling what I said above.
Woops, embedded link fail.
Jerry,
Your work for science and clear thinking is greatly appreciated. Much of what you have written in this post is quite on the mark. However, as a person who has been suffering from a slow variant of ALS for 20 years, I was dismayed to read the dismissive tone in your first paragraph, referring to the Ice Bucket Challenge as a “stunt” and a “gimmick.”
For someone like me, growing weaker by the month, the paltry $45 million is $45 million more in the battle than there was a few weeks ago. And now, instead of explaining that I walk funny not because I am drunk, but because of ALS, I find people are more aware of what those three letters mean.
Yes, the government should be doing much more. And help from that source has been slow because of the false ethics hypocritically enthused by so many congressional troglodytes. I realize your post is intended to draw attention to the callous 13th Century antics that have stalled meaningful research. However, raising cash and awareness through this gimmicky stunt has proven a viable and refreshing alternative, even if it falls far short of what is needed. Please don’t throw cold water on the challenge.
Hey wait, I live in Iowa City, and somehow I have never heard of this outfit. Google reveals that it is located in room 340 of the local Catholic-owned hospital.
Poking around their website, I found a lot of writing like this:
That’s some top-drawer Catholic thinking (and writing), that is. It gives me so much confidence in their “pro-life driven research”. Here’s an idea, let’s play it really safe and do no research whatsoever!
Hey dudes,
I am all for embryonic stem cell research. I think the issue here, is that few are looking at the actual study in question and both sides are making big generalizations. First, this side is saying Christians (or religious groups) are against IVF research. The other side, is saying they are against all embryonic stem cell research. Here’s the deal:
Everyone seems to be up in arms about a study involving Human spinal cord-derived neural stem cells which came from a fetus. Strangely, these cells are not embryonic, but they did come from an aborted fetus. All the religious groups keep pointing to the same study, but these cells are too mature to even be embryonic. Regardless, if you read the link below, you will see the study in question and see that the ALS is supporting it.
http://www.alsconsortium.org/trial.php?id=12
Even if stem cells come from aborted fetuses and not embryos, the nun’s assertion that such research encourages abortion is not only plain wrong but also insulting to all women. I’m sure women are just lining up to donate their fetus to stem cell research because of ALS! Give your fellow humans some credit, nun lady – we’re not all sociopaths that need rules to guide us into making good decisions and the sociopaths among us definitely don’t need the Catholic church’s rules for good either!
I agree, I just wanted to clarify what the debate was about.
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Hello. I am a former Catholic school teacher in the Columbus, Ohio diocese. I am very grateful I did not have to return there this year, as the diocese has made some dramatic changes to the way teachers and employees of the district are being required to behave.
A better explanation for what they’ve done can be found on my blog. I won’t self-promote here.
The major problem I am having with the Catholic church’s stance on the ALS ice bucket challenge all comes down to one thing:
The Catholic Church seems more concerned about sharing its alarm and concern about a bunch of divided cells, than the emotional, physical and sexual abuse that has been going on for decades on LIVING people, specifically children. Ask a diocesan official to acknowledge and publicly speak on this subject, and suddenly they clam up. The diocese of Columbus, when asked their opinion after finding out Pope Francis apologized to six former victims of a priest’s repetitive, relentless abuse, was quoted as saying “No comment.”
If the Catholic church is to hold any credibility in what their members should be saying or doing, they need only turn the spotlight back on themselves and examine their own consciences while they ponder the question:
“Why are we more worried about a non-viable cell cluster than we are the emotional and physical health of our living, breathing children?”
Hypocrites, all of them.
“get Congress to stop cutting the NIH budget”
A conservative friend of mine advocates cutting government spending, but makes a point that he donates a lot of money to charity. I’d wager, however, that government programs that support social programs, research, community service, etc, exceeds charitable donations by orders of magnitude. His vote is a lot more important than his charity.
Ugh, the Catholic Church. Official Killjoys of the entire freakin’ universe since ever.
*I* object to this stupid challenge because it’s as effective as prayer since no one is donating money which actually helps! Ooooh, big freakin’ whoop that people are getting wet. They whine “but it gets attention to the issue.” what idiot under what rock doesn’t know about cancer or whatever? it’s the same as prayer, playing pretend that you are actually helping when you are doing NOTHING. Send real money to real people doing real things to help the problem, to cure cancer, diabetes, Parkinson’s, brain tumors, just do something REAL.
Given the superabundance of human gametes, the profligacy of nature (spitball effect), why is this even an issue? When did embryos and fetuses,for that matter, become
sanctified?
So- what are they to do, then, with the extra frozen embryos? Keep them forever? If they destroy them, according to the church, wouldn’t it be “murder”?
If the RCC were really serious about these extra embryos they should be buying them up and finding willing uteri–nuns, perhaps?
Don’t forget that research into ALS is itself morally wrong from a Catholic perspective since its purpose ultimately is to reject god’s gift of suffering.
It surprises me that the Catholic Church should condemn throwing water over someone.
Slaínte.
There’s a good many atheists I’ve seen complain as well. God or not, I wrote a response: http://wp.me/p3Bz8j-n0
Just read your linked response. Thoughtful and articulate. And, as one with a rare slow-burning variant of ALS, your post is appreciated.
The biggest problem with a lot of this charitable fund raising is that it’s a bit of a zero sum game. Likely every $10 donated to ALS under this program is $10 not donated to breast cancer or juvenile diabetes or whatever.