Radley Balko over at the Agitator heps us to
this story about Carleton University in Ottawa being really silly.
Apparently, during orientation week, students wander about the city soliciting donations for various (worthy) causes. This year, one cause was nixed, for the sole reason that it "wasn't inclusive enough".
That's right.
Cystic fibrosis has been dropped from the charity for not being "inclusive enough".
According to the NIH (
source):
Who Is At Risk for Cystic Fibrosis
About 30,000 people in the United States have cystic fibrosis (CF).
* It affects both males and females.
* It affects people from all racial and ethnic groups but is most common among Caucasians whose ancestors came from northern Europe.
CF is one of the most common inherited diseases among Caucasians.
About 1 in every 3,000 babies born in the United States has CF.
CF is also common in:
* Latinos
* Native Americans, especially the Pueblo and Zuni
CF is much less common among:
* African Americans
* Asian Americans
About 12 million Americans are carriers of an abnormal CF gene. Many of them do not know that they are CF carriers.
(credit. source is above)
The NIH considers CF a "rare disease", according to the Office of Rare Diseases. What is a rare disease? According to the NIH, it's, "A rare (or orphan) disease is generally considered to have a prevalence of fewer than 200,000 affected individuals in the United States" (
source).
Orphan Drugs save the lives of these people. Were it not for the ODA, many who have rare but treatable conditions wouldn't make it.
Anyways, were the students at Carleton University in Ottawa saying that this condition is too rare to merit charity? No. "Not inclusive enough" means that they believe it primarily affects white males. So it's aus. Read on to find out why:
The Pulmonology Channel (an
honor code site) gives these stats:
Incidence and Prevalence
According to the Cystic Fibrosis Foundation, about 30,000 Americans, 20,000 Europeans, and 3000 Canadians have CF. In the United States, about 12 million people are carriers, and every year 2500 babies are born with CF.
The disease affects all racial and ethnic groups, though it affects Caucasians with northern European ancestry more often than other populations. It is the most common autosomal recessive genetic disorder in Caucasians, occurring in about 1 out of every 1600 births. In African Americans, CF affects 1 in 13,000 babies; in Asian Americans, 1 in 50,000 are affected.
One in 22 Caucasians are carriers. Genetic testing can identify carriers, but the tests are only 80%-85% accurate because not all of the several hundred mutations that can cause CF are detectable.
(from
hier)
So that's what they mean by "not inclusive enough". (although unless I'm missing something, it doesn't say anything about male:female. Where did they get that? I strongly suspect they're making shit up with that "fact".)
Contrast that with the amazing story of
Steve Ferkau, who received a lung transplant about eight years ago. He suffered with CF (emphasis on "suffer"), and through one family's tragedy, he received lungs so he could live. Besides being a poster case in favor of organ donation (fill out your card today, if you haven't already), it shows how absurd the students at Carleton University in Ottawa are.
Getting into a discussion of, "why look for disease x, y, or z - that's non-inclusive in the other way" is pointless, stupid, and it misses the mark completely.
No - it shows what happens when politics are substituted for medicine.
Okay, many don't and won't get CF. But stopping research and condemning these people because the disease isn't "inclusive enough"? That's pure bullshit.
Then you've got
this bullshit (from 1997) where people got offended with Kenneth Cole's "Prayer won't cure AIDS. Research will."
While that is ancient history, especially in the HIV/AIDS world, it is a nice example of this type of silliness when politics tries to take over medicine.
Even if the students wanted to solicit donations for something absurd like, oh, I don't know, prayer's affect on types of cancer (yes there is research ongoing on that. I'm just linked out right now. check out the FDA's clinical trials site), let 'em try. It's a waste of money, but it's putting quackery under the light of the scientific method.
Where I would draw the line is not out of politics, but out of medicine. I would support stopping donations for quackery or made up disease states or "cures" (e.g., homeopathy). That's not a political distinction. It's a medical/scientific one. Or if they had students in the name of the health care donations solicit funds for AIDS denialism (which is politics in medicine) or something like that.
In other words, keep the politics out and base it on medicine. And consider filling out your organ donor card. Then we all can get along.
Yes. We. Can.
Hat tip to Radley. Check out his most excellent work at his blog (cited above or on the sidebar)
***
UPDATE***
It's been reversed. As soon as they realized that the male:female thing they originally thought was wrong. Don't let facts get in the way.
hier is a nice little smackdown of the university.
It's easy to say "check your facts and don't go on presupposed conclusions", but I have fallen for my preconceived ideas, too. Back on April 1, 2007. The CO2 tax and outdoor grills in the EU. So, I do it too. I should have known better. These students should, too.
