I wasn’t watching the TODAY show this morning, I was at work early. But when I logged on Facebook after class, I saw a story that caught my eye, and it happened to be aired on the TODAY show this morning. I’ve posted the link to the story at the bottom of this post, but here’s the gist. There is an 11 year old boy in California who has two genetic mutations for CF, but has no symptoms (according to the story run in the SFGate (link below)). Doctors have said that he does not have CF but have continued to monitor him for any changes. The boy started at a new school this fall and when the administration found out that he had the genetic disposition for CF, they told his parents that he had to move schools because there was already another CF patient enrolled at the school. For those of you who don’t know, doctors require that non-sibling CF patients not be within 3 feet of each other in order to reduce the rate and incidence of secondary infections and pathogen accumulation(such as P. aeruginosa and B. cepacia). The parents of the boy are outraged because their son, they say, poses no risk to the other child with CF because he shows no symptoms.
There are a number of sides to this coin that I’d like to address.
Is this boy really not a risk just because he shows no symptoms?
There is no way of actually knowing this is true without running an unethical scientific study on current patients. To my knowledge, different mutations of the gene (of which there are over 1,000 known) and the combination of the two mutations causes different symptoms in every CF patient. No two patients are alike and the extent of the progression of the disease as well as how it manifests itself is complicated. A carrier is someone who has only one mutated allele and one nonmutated allele. The TODAY show host said that the boy was only a carrier, but the article suggests that he is not. Carriers indeed have no harmful effect on people with CF other than the normal colds and other stuff that we pass around in large quantities. If this boy is indeed a carrier, then he is not a risk or at risk. However, if he does have two mutated alleles, even though he shows no symptoms, he could be. We don’t know.
Was it right for the school to demand that he leave?
There are legal answers to this question that my sister would be better to address, but let me come at it from a medical perspective. Of the roughly 300 million people in the US, 30,000 of them have CF. On a campus of 40,000 people, that works out to four of us (statistically). In San Fransisco, statistically 80 people will have CF. The odds of these CF patients running into each other accidentally is increasing because patients are living longer. If the boy really does have CF (as I assume he does based on genetic screening, it may just onset later in life), then he is in fact a risk to the other student just as much as the other student is a risk to him. In this light, I don’t think the school was right to tell him to leave. There are ways to limit contact between the two students (especially given that the other student is older than he is), and I think that these measures should have at least been discussed before anyone was asked to leave. As a side note, I know that there are a few other CF patients at MSU, and I have no way of knowing if I come into physical contact with them at all. But at a school this big, it is more likely that I’ll get a cold that will turn into a bacterial infection from my labmate than to get P. aeruginosa from another CF patient. That being said, I’m still careful (as you should be too!) and the other patients that I do know here and across the country are contacted by email and phone and skype rather than face to face.
What does this mean for the rest of the CF population?
There a lot of potential implications for the rest of the CF population. It really depends on how people view it. Here’s my take, feel free to disagree. Similar to last week’s post about labeling people with health problems, this now labels specifically the CF population. Although I appreciate the school’s attempt to keep both students safe and healthy, it creates a stigma that is going to be hard to break. It labels us a danger, and many people may extend it to people other than CF patients. I’ve never been one for labels (except on test tubes and plates) and I’m not for it here either. I think the school is right to try to keep both students safe and healthy, but they went about it the wrong way.
Rather than put a label on a kid or an adult, why can’t we just try to love them? I saw a quote somewhere the other day that said, “Don’t judge. You don’t know what I’ve asked her to bear.” It’s a good reminder to all of us that we all have stuff going on in our lives, burdens that God has asked us to carry. Who are we to label or judge people when we don’t know their pain, their burdens, or their joys? I know I’m not perfect at this – I snapped just yesterday at a particularly annoying student who wanted to be lazy and make someone else do the work for him. Was it right for me to snap at him? No, I don’t know what he’s going through or what he may be dealing with.
All of this to say, why should we label people? As smart, fat, skinny, stupid, lazy, arrogant, rude, pompous, CF, cancer, sick, healthy or otherwise? I know there will be a day where we can look past all of this stuff and see the image of God, but here on this Earth, we are labeled by people, by insurance companies, by doctors, by friends. I’m labeled by insurance companies as an expensive pre-existing condition; by doctors as a CF and diabetic patient; by people who don’t know me as “sick” and a “risk” and by friends in a number of ways both positive and negative. It shouldn’t, but my condition has been held against me in relationships and in the workplace because of these labels.
Perhaps this report should, rather than anger us over injustice or justice (whichever way we see it), right or wrong – perhaps it should point us back to ourselves and how we see and treat each other, whether in sickness, health, work, school, the bus stop or the work dinner, on the street just passing by or sitting down for coffee. I’ll definitely be thinking about how I treat others today, and know that I don’t know what they’re going through, and rather than judge them, pray for them.
great, great thoughts as always. I know I almost always forget that I don’t know other peoples’ loads…what a helpful reminder!