Wait…what?
I’m confused. I have CF and this is the first I’ve heard of anyone believing that a carrier poses a threat to someone who actually has the disease. CF is a genetic disease, NOT a contagious viral or germ-based affliction. Granted, I don’t keep up on CF developments like I should so am I missing something or are these school official idiots?
It’s the same type of school that would suspend a kid due to no-tolerance rules for bring a pair of fingernail clippers to school.
This is the issue:
Exposure can cause bacterial cross-contamination and a higher risk for infections among people who are carriers of the gene or who have the disease, according to a paper published in 2003 by Dr. Lisa Saiman, a professor of clinical pediatrics at Columbia University Medical Center in New York.
School administrators said the school already had a student with cystic fibrosis before Colman arrived.*
Still think it is ridiculously overcautious. It seems like allowances could be made to keep the two separate.
Sounds pretty sketchy to me. A carrier doesn’t have the disease so…? By that reasoning parents of a child with CF who are just carriers shouldn’t be around their kid, right? 
I don’t know, maybe I’m just too out of the loop. (At 46 I’m still doing okay…)
I’m trying to figure out why, if this is their practice for carriers (who are otherwise perfectly healthy), why didn’t they kick the kid with CF out first?
My take is that there are TWO kids at the school with the disease. They asked the most recent kid to transfer to let the kid stay who had been there the longest.
The reasoning seems to be a worry about **cross-contamination with a bacterial infection **(that they are both prone to), rather than a worry about a non-existent risk of transmitting the actual disease CF.
The medical reason seems to be that you should not have two kids with a tendency to get bacterial lung infections at the same school, because they could cross-infect each other. The school is looking after the safety of BOTH kids with CF.
Can’t blame them when there are hungry lawyers to feed.
Read the article. They don’t have two students with CF. They have one. They have a second one who carries the gene but doesn’t have the disease. Probably, they have other carriers who don’t who don’t know they’re carriers. This is a family being punished, apparently, for being overly open with medical information.
And the fears seem to be unreasonable. As the article says, even the CF foundation only recommends they not be put in the same class, and even that’s probably overly cautious.
The one kid doesn’t have a tendency to get bacterial lung infections. He doesn’t HAVE CF. That is according to the “Director of the Cystic Fibrosis Foundation Burkholderia cepacia Research Laboratory and Repository at the University of Michigan” quoted in the article.
This^
The gene frequency for CF mutations is around 1 in 25. So, if there are, say, 500 kids in his school, about 20 of them also carry the CF gene. A thousand students, 40 carriers.
Why is this one boy being persecuted when there are dozens of kids in the same school who also carry the same gene as he does? What absolute bullshit!
I am willing to assume that I misunderstand HIPAA, but doesn’t all of this crap violate HIPAA in some way?
I don’t typically weigh in on medical areas out of my expertise, but this one is interesting.
From what I’ve read, what is needed is a single call to Dr Lisa Saiman, with a single question: Is it correct that there is evidence that CF carriers are considered to be higher risks than non-CF carriers for transmission of CF-related pathogens?
If the answer is “Yes,” then we have an unmanageable problem, since every carrier out there now has to stay away from every other carrier (along with CF patients).
If the answer is “No,” then there’s no issue.
If the answer is “Maybe,” then it becomes a value judgment, as it is here in this school.
Here’s the medical issue involved:
CF patients get pulmonary infections easily, and these tend to be the same handful of organisms (pseudomonas and b. cepacia are particularly notorious). So each CF patient is a reservoir of bad germs that put the next CF patient at risk. (Thus, no more CF camps where we all suffer and support together but end up all infecting one another with our various multiply-resistant germs.) OK, but are CF carriers either more at risk themselves or at risk for being a resevoir–and therefore a risk to CF patients?
The OP article says that Dr Lisa Saiman has a paper out there saying they are. I can’t find that paper. I found one reference in one paper that some parents of a CF patient (the parents are obviously carriers) got the same strain of Pseudomonas as their CF kid. That’s it. And it was not Saiman’s.
But–especially in a Pit thread–I’m not inclined to do an exhaustive search.
Here is the best paper I could find from Dr Saiman on the topic of CF and infection control, and I didn’t see anything about carriers in skimming it over. Maybe I missed it.
And to the comment above about lawyers: Yes; it’s the lawyers, or at least the fear of them. Common sense for you and me does not protect me and my institution from lawyers. If CF carriers do increase risk for themselves or anyone else, then the school guideline–ironically, from the CF foundation–is going to be a 3-foot, no shared-locker, vigorous hand-washing, no open coughing (and probably no shared classroom)…blah blah blah rule. When the CF kid gets a germ, they’re going to test the carrier kid and if those germs are the same one, guess who’s gonna get sued? It is absolutely impossible for a school to manage to what seem on paper to be ordinary, practical, common-sense guidelines.
On the HIPAA front: These are probably voluntary disclosures, although one wonders if at least one set of parents is over the top. Let’s say the CF kid’s parents are particularly militant about having their baby protected…
In any case, HIPAA goes out the window for bad germ problems. You can’t be typhoid mary and hide behind HIPAA.
Yeah, but it’s obvious that it’s not a problem, since the way it works is that the CF patient who is already more likely to get certain infections can give those infections to other CFs. So you have multiple people who can catch the bug instead of one, increasing the risk.
There is no mechanism that I’ve seen that would allow a CF carrier to be worse. A single study is not in any way conclusive, as anyone who knows the slightest bit about science knows. Any one experiment can be a fluke.
And if it were about lawyers, then they should know that he can now sue them, and likely win.
You can have CF and hide behind HIPAA, though. Even if you have 2 mutations and active CF. It’s not communicable and not a reportable illness anywhere I can find. The parents of the carrier absolutely did NOT have to disclose his health status to his school, and if his doctor or nurses did without releases on file, there’s a whole 'nother lawsuit begging to happen.