CF 2.0: Living Life As A Pariah

I’ve already ranted here about a new Cystic Fibrosis Foundation (CFF) policy, infamously termed the “one person rule.”  If you don’t want or have time to ready the previous post, here is the policy in a nutshell:

If you have CF and are attending an outdoor event sponsored by the CFF, you must stay 6 feet from another person with CF.  How you are to know whether another has CF or not, I have no clue.  Listen for coughs?  Look at fingernails?  Just ask everyone in your vicinity for their genotype? Sarcasm intended.

If you have CF and are attending an indoor event sponsored by the CFF, you had better have been invited by the sponsors, because only one person with CF can attend such a function.  It doesn’t matter the size of the venue…convention hall or boardroom.           ONE PERSON ONLY.  Oh, and you have to be invited to be that one person.

I obviously have an opinion about this but I won’t go into it again.  I am not the only one opposed to this new policy, however.  Here is an excellent discussion of the matter in podcast form, between one of my CHEST article co-authors, Steve Shepherd, MPH, and one of the members of the CFF infection control committee, Dr. Manu Jain.  If you are inclined to read journal articles, here is the complete CHEST point/counterpoint debate:  Complete Point Counterpoint Chest April 2014.

Now then,  at last I will come to the topic at hand.  There are definite unintended consequences to this policy, AKA collateral damage.  Not too much coverage is given to the psychological effects such policy will have on those of us with CF.  I think it is important to consider such effects, and I would hazard to guess that these were not discussed much amongst the infection control committee members,  only one of which actually had CF…alas, a former employee of the Foundation.

Just this weekend, it was made clear to me that my handling of “snack duty” for my son’s team was a concern to a mother of a child with CF who was also on the team.  Snack duty.  As in, putting Gatorade bottles into a cooler, along with whatever I buy at a grocery store or bagel shop.  I certainly understand this mother not wanting me to drive her child in a carpool, which was also made clear to me  (like I would ever do something so completely stupid), but…snacks?  Really?  Is it  more likely that her son would catch a bug from a Gatorade bottle wrapper that I might have touched than if he drinks from a public water fountain? I am trying to put myself into her shoes, asking what I would do if my son was the one with CF.  The thing is, I know that resistant bugs, dangerous to people with CF, are everywhere! They are in the ground, in your sinks, in houseplants, in air around construction sites, in medical clinics, in nursery homes, in hot tubs, swimming pools, dishwashers, drinking fountains, shower heads, they are EVERYWHERE!  But instead of taking practical measures to minimize all of these risks, we are being told to fear each other…and  people are freaking out.  Case in point, snack duty.

The end result was that I indirectly assured this mother that of course I wouldn’t drive her son anywhere, and that I will have my sister do all of the foodstuff “touching” that must occur on my snack day.  So I am a pariah.  Again.  This time, for a reason that I honestly think is complete over-reaction, and directly an effect of the infection control policies of the CFF.

This being a pariah isn’t new to me.   I’ve been a prohibited from attending CF events for years now due to growing MRSA in my sputum (which I got from visiting my father in an assisted living center…NOT from another person with CF).  MRSA is a very common problem for those of us with CF, as are several other multi-resistant bacterial “superbugs.”  These bugs are everywhere, because of the overuse and abuse of antibiotics.  Sadly, our lungs are like petri dishes from heaven for these infectious agents, and once they take hold, they are almost impossible to eradicate. Because of this, I can no longer physically attend research advisory board meetings (I take part by phone), give talks at CF education days, or go to the annual CFRI conference, which I used to love going to, not just for the information, but to meet and relate to others with my same CF issues.  No longer can I coach kids in person the way I used to. In short, I’m not invited…because of the bacteria in my lungs.  So I’m used to being that kind of pariah…not invited to be around people with CF.  But it seems to have reached a whole new dimension now.  Now, things that I have touched are uninvited…

I get it.  Cross infection is a big deal.  Nobody with CF wants resistant bacteria growing in their lungs. But what message are we sending children with CF?  As a former kid with CF myself, I know firsthand that they already feel…different.  They have coughs that turn heads. Their fingernails look odd. They have to take weird pills whenever they eat.  They miss school more than their friends.  Sometimes, they even have to go into the hospital…not to mention that they can search online anytime they want and learn their prognosis.  So now let’s throw the idea out there that they really can’t be around others with their disease.  Oh, and these “others” are really the only people in the world who know what they go through and understand their feelings about it.  They could be contagious to others and their friends with CF could make them sicker. Will there come a time when they are asked to use their own special drinking fountain?  Will their gym towels or team uniforms have to be laundered separately? Hell, will they even be allowed to be on the same team as another kid with CF? I wonder who’s going to pay for the psychotherapy?

But there are other more ominous unintended consequences.  What we can all agree to is that the most dangerous place for a person with CF to be is in a CF clinic or hospital ward with other patients with CF. This is historically where infectious outbreaks have occurred (not in convention centers), along with CF camps of old, where kids with CF lived in close proximity and shared everything from respiratory equipment to food to tents, etc.  The CFF has included numerous suggestions about how to minimize the risks in clinics and hospitals, and all are very good policies.  Yet, I have heard from more than one person who is now afraid to go to their clinic because of the “one person rule.”  And I can hardly blame them.  So the policies that are intended to protect us are scaring us away from healthcare.  Huh…maybe not so good.

Perhaps I am just thin-skinned (ha…that’s an understatement), and this shouldn’t bother me.  But it continues to bother me, and events like the one over the weekend (I’ll call it “snackgate”) does nothing to quell my fears about how this new policy will cause others to act toward people with CF.

What say you, CF world?

 

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When The CFF Gets It Wrong

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.
• 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?