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.
