Reaction: New CFF Infection Control Policy

I had absolutely zero percent interest in writing about this or sharing my thoughts on the matter. I was only going to share the new guidelines as I did this morning, here, and move on. What's sparking this blog is the responses I've been reading, receiving, hearing etc. Maybe what I write here will make it better for some and maybe it will make it worse for some.

[And now the obligatory preemptive strike. Everyone is entitled to their own opinion. How you feel about this and how it affects your life is valid. I respect the views of others. I'm sure there are other pleasantries that I'm leaving out that I will soon be reminded of. This is just my opinion, no more, no less.]

As many of you know who read this blog from time to time, I'm a pretty pragmatic guy. I see the world in black and white with very little grey. I like to focus on the rule and let others worry about the exceptions to that rule. I like facts. I prefer for others to give me straight talk and I appreciate that in return (Just ask my wife). I'm more concerned with the solutions to the problems than the problems themselves. I'm also a pretty visceral guy. Not in an emotional outburst sort of a way, but in an inward, deep-thinking kind of a way. I like to think of unintended consequences. I try to understand someones motivation rather action taken or not taken. I like to debate just to hear the other side, even if I agree with it. I will often not respond during a conversation because I'd rather respond with how I really feel than respond with how I felt in the moment.

Anyway, that's where I'm coming from with this.

So what was my first reaction when I received the email from the CFF regarding the email? Honestly, I said to myself, "Ok," and moved on with my day.

As I started thinking about it more, and with the assistance of the thoughts from others, my opinion has evolved, but maybe not by that much.

Here are the facts about cross-infection:

1. People with CF can get each other sick by spreading different bacteria.
2. New evidence suggests that this may be a bigger problem than once thought.
3. New evidence suggests that the bugs can "hang out" longer than previously thought.
4. New evidence suggests that droplets can go further in the air than previously thought.
5. CFers getting new bugs in their lungs that could potentially make them sick, even with their consent, is not a good thing.

Here are the facts about the CFF:

1. They are one of the best non-profit organizations around.
2. They have changed the way orphan disease research gets done.
3. Their job is to raise money.
4. Their job is to develop materials and provide some programs that support the CF community.
5. I would not be alive today without them doing what they do.

Here are some facts about me:

1. I've been to and spoken at 100's of CFF sponsored events both indoors and outdoors.
2. I've had good friends who happen to have CF my entire life.
3. I have a good relationship with the local CFF chapter.
4. I have no relationship with the national office and have never been to Bethesda, Maryland.
5. I'm not a cheerleader for the CFF.

Okay. So. What does all of this mean?

In short, the CFF can make whatever rule they want to make regarding what takes place at events they are running and/or supporting. There is absolutely nothing I'm going to say that will change the new guidelines set forth. They are not basing these on feelings, they're basing them on science, facts and research.

Do I think it's awesome? Of course not! But it's totally understandable. Who knows, maybe as we continue to learn more and more about pathogens, we'll be wondering why they didn't do this sooner. They are not doing this to protect themselves, they are doing this to protect us. I can understand if a business, or in this case a non-profit, doesn't want any part in putting us in a possibly compromising position.

So how do I respond? Well, at this point, I'm not sure. I know this though. When I don't like something, I don't turn to complaining, I turn to changing. If I think someone isn't doing a great job, I will try to take their job and do better. If I can't make a system run smoother, I'll opt to create a new system. If I think I can be better at x, y or z, I don't talk about it, I just do it. In other words, if I thought that a myriad of people with CF had to be at an event in order for it to be a success, I'd throw my own events with plenty of people with CF invited. But I don't think that. I think the CFF can still have successful events, and raise a ton of money, even while following the guidelines. (In fact, some CF centers have been enforcing some of these guidelines for years at their events [like CF Ed Days] already. Those events are still successful.)

I woke up this morning and these new guidelines didn't change my life one bit. There may be things that will change in the future with regards to my participation in certain events, but that remains to be seen. I'll still take the same precautions as I did before when hanging out with my friends with CF in the real world. Will my approach change with them? Maybe, but not by much.

I woke up this morning with a wife to love. I woke up this morning with a daughter to raise. I woke up this morning with bills to pay. I woke up this morning with a run to complete. I woke up this morning with 4 treatment sets to do. I woke up this morning with Cystic Fibrosis.

I have much bigger fish to fry. Now, maybe I'll just fry those fish 6 feet away from all of my fish-frying peers.