When The CFF Gets It Wrong

If you're new here, you may want to subscribe to my RSS feed. Thanks for visiting!

Six months ago, the National Cystic Fibrosis Foundation announced an update of their infection prevention and control policy. As stated on their website:

Indoor events: At any Foundation-sponsored indoor event or meeting, including gatherings such as chapter committee meetings, only one person with CF may be present and he or she will be designated in close consultation with event chairs and key event volunteers.

At any Foundation-sponsored indoor event or meeting, including gatherings such as chapter committee meetings, only one person with CF may be present and he or she will be designated in close consultation with event chairs and key event volunteers. Outdoor events: At Foundation-sponsored outdoor events or gatherings, people with CF need to maintain a distance of at least 6 feet from each other.

As stated by the CEO of the CFF, Robert Beall, the intent of the change of policy was “… we want to be sure that we are doing all we can to reduce the risk of cross-infection among people with the disease. The health and well-being of people with CF is our top concern — it is at the heart of all we do.”

At the risk of incurring the wrath of what most in the CF world regard as a beloved organization run by those with only the best intentions for all of us with CF, I would like to respectfully disagree with Dr. Beall, and the Infection Prevention and Control Committee charged by the CFF to come up with an updated and revised version of the 2003 Infection Control Recommendations for Patients with Cystic Fibrosis.

Don’t get me wrong. The CFF does an amazing job raising money and awareness in the fight to cure CF. The millions of dollars raised by over 75 chapters and branch offices of the CFF provide the ongoing gravitational force that has led to a tidal wave of new discoveries and lately, some promising new treatments for a disease that we all love to hate. There is no doubt that the fight to cure this ghastly disease would be nowhere near the finish line, as it appears to be rapidly approaching now, if it were not for the Cystic Fibrosis Foundation.

Indeed, the Foundation is lauded for birthing the concept of “Venture Philanthropy,” in which non-profit fundraising organizations provide funding for small pharmaceutical companies to develop new drugs for orphan diseases…companies that would otherwise be unable to do the necessary research. The idea is brilliant, and the proof of concept is none other than Vertex Pharmaceutical, maker of Kalydeco, AKA Blue Lightening, or as I like to call it, The Little Blue Pill That Was The Beginning To The End Of CF As We Know It (I need to work on an acronym). Bob Beale and his team deserve abundant credit for this.

But, you and I are a big part of the fund raising process. We fund raise. We educate others. We tell our stories. When we were younger and cuter, they were our pictures on the fund raising literature. After all, this is about us, right? Yet here is where the CFF has completely left us out of the equation. We are SO far out of the equation, in fact, that the concept that we might actually be able to decide for ourselves if we want to risk attending a CFF event has not even been considered–at least not that I can discern.

Instead, the CFF will be introducing at their next annual conference, a 98 item document, listing all of the ways adults and children with CF should be protected from cross infection. Note that the passive nature “be protected” as opposed to “protect themselves.” I mean what I say and I say what I mean. This document covers everything from telling us to avoid construction sites to containing our secretions. They include the directive to avoid all social contact with each other, to avoid car rides with each other, to not share utensils, to stand no closer than six feet from each other if we are outside, and to please not exercise together (they didn’t say please). The Foundation has no hesitancy telling us what to do.

Generally, I can take this all with a grain of salt and know that they are in fact, simply doing their job, and attempting to educate us about the risks that we face when we come in contact with another person with CF whose lung microbiome is different from ours. NEWS BREAK: Bugs might mix and match, and we could end up on the wrong side of that equation. I am well aware of that, and I don’t intend to hug you the next time I see you (I am assuming that you, dear reader, have CFTR “issues” as I do). But, perhaps there are a few of us out there who didn’t see Grey’s Anatomy, and don’t yet know that we are all co-pariahs and need to avoid each other like the plague. If so, I’m sure the new edition of the best-selling Infection Control Recommendations for Patients with Cystic Fibrosis will not be for naught.

But when they specifically mandate my behavior, I get pissed. And then I write blog posts.

The last I checked, I had free will. In fact, I vaguely remember from Civics class a few decades ago that I had the “right to assemble.” I don’t take kindly to being excluded from an event sponsored by the very organization that is supposed to be my advocate. Interestingly, in the 92 item Infection Control Recommendations for Patients with Cystic Fibrosis, all of the directives are phrased as “recommendations.” This is good. That is what they are supposed to do…recommend ways to avoid cross infection.

Yet, the website specifically says “…only one person with CF may be present and he or she will be designated in close consultation with event chairs and key event volunteers.” Not a recommendation. An order.

The CFF has decided it is my caretaker. It wants me to avoid all risks, and is willing to ignore any rights I have regarding attendance at their events. Is the CFF going to mandate that I wear a bicycle helmet? It is risky behavior to leave it behind. This may be a silly analogy, but it is a PERFECT example of how crazy this new “one person” policy is. Clearly, I get to decide if I wear a helmet, right? So, why can’t I decide if I want to take the risk of going to an event where there may be another person with CF in the vicinity? I can decide. I should be allowed to decide. In fact, it is of highly questionable legality to prevent me from deciding.

So, how did they get this so wrong? This is anybody’s guess, but I would imagine some lawyers were involved. After all, if Johnny catches a bad CF bug from Sally, and it’s not on the record that the CFF advised against their sharing of that hot dog, Johnny’s parents could come after the millions that the CFF raises. We all agree– that would be bad.

But they have these things called “liability releases.” You see, I sign them all the time when I do clinical trials for new medications. So, if I wanted to go to the North American Cystic Fibrosis Conference this year, all the CFF would have to do is nicely ask me to sign a sheet of paper saying I won’t sue them if I start growing Paul Quinton’s pseudomonas when I get home. See? It’s simple. Problem solved.

So maybe that is not the real issue. I don’t know. Yet I do know that there is going to be some collateral damage from this new policy. First, there are many of us that are upset about this, and we are not going to back down easily. I am hoping that in writing this, I will hear from some of you who also see this new policy as going too far. There is a sentiment among those I have spoken with that the CFF does not place the quality of lives of adults with CF high on it’s list of priorities. Certainly, this new policy does nothing to diminish this notion. A groundswell of discontent from adults with CF is not something the Foundation would welcome, and might be what it takes to cause reconsideration of the “one person” rule.

I have heard and read some responses to this policy change along the lines of, “oh well, they are just trying to protect us, and they know best, so…whatever.” Please think again, a bit more deeply, if you are of this mindset. The CFF is attempting to control our behavior, at least when it comes to this “one person” rule. This is wrong. No matter how wonderful an organization it is, and how much it has done for us, this is wrong. We live in a free country where we are free to decide what risks we want to take. Please don’t let them start down the slippery slope of dictating behavior due to a certain genotype, because that is exactly what this is.

Other than general discontent among the rank and file patients, there is a possibility of collateral damage that is even more ominous. I believe that this new policy will continue to foster a very real FEAR that could keep patients from attending their clinic visits. After all, certainly more than “one person with CF” is allowed in a CF clinic, and if the Foundation won’t allow more than “one person with CF” at their events, it is not unrealistic to imagine that people will extrapolate from this policy that CF clinic is an unsafe environment.

Fear…born of cross-infection paranoia…is unhelpful, and very unnecessary. The CFF is indeed “adding tomorrows every day.” But life is not all about the numbers of tomorrows…it is also important to think about the quality of those tomorrows. If I can’t spend my “tomorrows” deciding for myself how to live, then what is the point exactly?