Monday, October 28, 2013

Week 10: Acceptable risks

Since this week was a relatively uneventful one in Lemon's life, I decided to devote this week's blog post to an issue that has been on my mind a lot since the climb last week, and one that has been generating a lot of controversy in the CF community.  This is the issue of the Cystic Fibrosis Foundation's new policy regarding the attendance of CF patients at Foundation events.  The policy (which you can read in its entirety here) states that only one CF patient, presumably to be chosen by event organizers, is permitted to attend an indoor Foundation-sponsored event.

The rationale for the policy is that CF patients are at risk for lung infections by particular bacteria--bacteria which almost never infect the lungs of non-CF individuals.  Research has made it pretty clear that under at least some circumstances, these bacteria can spread between CF patients, leading to severe illness or even death.  This risk is the reason why CF clinics do not have waiting rooms (where patients would be likely to sit near each other), and why the exam rooms at the clinic are completely sanitized between patients.  Along these same lines, the CF Foundation decided to err on the side of caution and try to eliminate the risk that a CF patient infected with one of these bacteria might attend an event and unintentionally infect another patient who happened to be there.  

Although well intentioned, this policy has been met with resistance from some adult CF patients, who view it as overly cautious and paternalistic.  They also feel that the policy stigmatizes them, and prevents them from interacting and socializing with other patients.  In their view, patients (or their parents) should be allowed to assess the risks of being near other patients, and if they deem that the benefits of attending the event outweigh the risk of contracting a lung infection, they should be able to attend the events.

This policy has generated so much controversy in the community that a pair of opinion pieces on the subject were recently published in the medical journal ChestHere, you can read the piece in favor of the policy, written by CF researchers, which summarizes the studies indicating that disease-causing bacteria can be spread between CF patients.  You can then read the companion piece, written by several CF patients with medical or research training, which argues that the actual risk of disease spreading between patients who are merely in the same room is relatively low, and is outweighed by the social benefits to patients who attend events.  They feel that adult patients should be allowed to assess the available information on the risks and benefits, and make their own decisions about whether or not to attend events.

There are several reasons why I firmly support the Foundation's new policy, and why I feel that it is extremely important for other patients and their families to comply with it.  First, while I agree with those who do not support the policy that the risk of an infection spreading from one patient to another at an event is small, I feel that the risk is very real.  Further, the potential consequences of an infection are particularly grim since the bacterial strains spread between CF patients may cause more severe disease than those that patients pick up from the natural environment.  Second, while it might be theoretically possible to minimize the risk by having CF patients at an event stay as far away from each other as possible, the truth of the matter is that since modern treatments for the disease are so good, it is almost impossible to tell who at an event has CF, and who doesn't.  Patients who are concerned about stigmatization are unlikely to consent to wear a badge or ribbon to allow other patients to identify them and steer clear.  Third, although CF patients are routinely tested to determine whether they are currently carrying any harmful bacteria (typically one test every 3 months), the infections can come up at any time and often don't produce symptoms right away.  So, even someone who in good faith believes himself not to be at risk of spreading an infection may be doing just that.  In other words, the risk is real, the potential consequences are dire, and alternate ways of minimizing the risk are inherently limited.  Thus, the CF Foundation's new policy seems to me to be the only logical way forward for the time being.

I certainly acknowledge the importance of social interaction between CF patients--my cousin, who has professional expertise on the topic, recently wrote a piece on the importance of social interaction between young adults with cancer, and analagous arguments can certainly be drawn about the importance of interactions between CF patients for companionship and support.  In this day and age, though, a great deal of that interaction can take place online, where there is no risk of disease transmission.  In a follow-up piece, my cousin notes, correctly in my opinion, that the quality of interaction that patients get from online interactions is fundamentally different than the quality of in person interactions.  There are some aspects of in-person interactions that are hard to replicate online.  Adult patients (or parents of kids with CF) can certainly decide for themselves whether these in-person elements of interaction are worth the risk of contracting a lung infection, and get together any time they choose--just not at a CF Foundation event.

The new policy was on my mind at the Climb for CF last week, since a large printout of the Foundation's policy was clearly on display at the check-in table.  It made me think about how much I looked forward to some day having Lemon be the one CF patient to attend an event, to serve as an inspiration for research and fundraising (because, really, who could resist that face?).  I suppose as a rule-following sort of person, I had imagined that people in the CF community would respect the new policy, regardless of what they personally thought about it.  You can imagine my surprise, then, when over the course of the morning of the climb it became clear to me from overhearing things said by those around me that there were at least four CF patients in attendance.  Three of them were children of less than 10 years old.  Since this was my first Foundation event, I can't say whether this is typical or not.  But, the fact that CF patients other than the designated one attended the event led me to the immediate conclusion that I would never, under any circumstances, bring Lemon to a Foundation event.

I am a firm believer that adults should be able to choose to assume risks for themselves, and to some degree, for their children--provided that by assuming those risks, they do not place at risk those who, by their actions, are trying to follow the rules and avoid risk.  Adults can choose to drink alcohol, which carries some inherent risk--but they cannot then choose to get behind the wheel of a car, because such behavior puts at risk everyone around the drunk person, including those who are following all the rules of the road.  Similarly, I feel that adult CF patients can chose to get together at private gatherings and risk contracting lung infections, but by choosing to disregard the Foundation's stated policy, they are putting at risk someone (namely the designated CF patient at the event) who is following the rules and did not consent to the risk to which s/he is now being exposed.

So, what do you all think?  Is the Foundation's policy a good idea, or not?  Would you bring your child to a Foundation event?  Do the benefits outweigh the risks?  Let your voice be heard in the comments area!

Here's a little movie of Lemon demonstrating his new leg strength and coordination (as well as his vocalizing!) to watch while you think about what to say.

1 comment:

  1. Hey, I'm not a mom, but I pride myself in being highly rational. And my "rational" opinion is this. I think it doesn't matter what the policy actually is. If you as a mom don't feel comfortable with your child assuming the risk of getting a bacteria, then you have to go with the decision that makes sense to you. I mean, even if the policy were to allow 100 CF patients at events, you could still easily keep your child at home to minimize the risk he catches an infection.

    As for the other people violating the policy, well, sure, they're breaking the rules, but other than the fact that they're breaking some rules, who cares what they do? Whether there are 1 or 100 people at that event, you're not bringing your child to it, so why does it matter that other people are breaking the policy?

    Frankly, I wouldn't stress too much about it. As a mom you need to have the confidence that you're choosing what is best for your child until he can make those decisions for himself. What others choose to do is none of your business, really, especially when they don't put the health of your child at risk because your child was not present at the event anyway.

    Anyway, I enjoy reading your blog and little Lemon is super cute. Greetings from Switzerland!