When The CFF Gets It Wrong

Direct them to safety, for they know not what they do...

Direct them to safety, for they know not what they do…

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?

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32 Responses to “When The CFF Gets It Wrong”
  1. Robin says:

    Julie, thanks for saying it all. I am not a CFer, I am a mom of an adult CFer who has had a transplant so she and our family are in a different place at this time with the CF world but……… you hit the nail on the head. Unfortunately, the CFF from the very beginning of dealing with the cross infection issues has used fear and control instead of teaching self responsibility and reasonable behavior, a missed opportunity to strengthen our community. This has been troubling for a very long time. It has been so very hard to witness the terror of parents of young and old CFers because of these doctrines. So sad. Our community was broken and shattered into splintered off pieces because of this fear. Is it justified? Have you seen any convincing evidence that this makes any sense at all? Is this separation keeping CFers from being sick or dying or needing transplants? Why are these extreme measures needed except to control and intimidate…..is it really to protect? Prove it………

  2. Julie Desch says:

    Thanks, Robin. I couldn’t agree more with you. I think they have completely lost it with this “one person” thing, and we cannot let them get away with it this time.

  3. Erin says:

    I respectfully disagree. As the parent of a child with CF and an active member of CF community both in the clinical space and with the foundation, i respect and appreciate this decision by the foundation. I’m not suggesting that it was an easy one for them to make or for patients and families to abide by, but I do wholeheartedly believe that the decisions they make are not for legal or liability reasons but truly for the well being of the population that they serve. Your ignorance of their guidelines puts many people beside you at risk. I’m very glad that many people like you and Ronnie have good health and have been able to live a relatively normal life with CF. Sadly, many others struggles with chronic and recurrent infections and continue to acquire new pathogens that make them worse off than they need to be, and a ton of new research has proven that these bacteria are being passed both directly and indirectly from patient to patient. I understand that it’s less than ideal to be excluded from events and such, but as with many of the other less than ideal recommendation and guidelines that the CFF has published through the years, patients will benefit from this in the form of longer, healthier lives.
    I have spoken with members of the leadership team at the CFF national office about these new guidelines, and their response to me was that the benefit to the foundation [of having patients attend an event that directly benefits the CFF] is not worth the risk to patients of coming into contact with a new and potentially harmful bacteria from another patient. In the clinical setting, the benefits to patients of seeing their doctor every 3 months as well as when they are sick, while employing reasonable infection control measures, outweighs the risks because of the proven benefits to be seen regularly.
    It’s one thing if you would want to put yourself at risk by attending an event with other patients, but its selfish and disrespectful to put others at risk because you don’t agree with the new guidelines.

  4. Katie Richardson says:

    Julie, I wholeheartedly agree with you. I am 46 year CF adult, who has made it a point to never allow CF to limit me in any way. I was furious when the notice came out; so much so that I refuse to give any money to the foundation until they change the directive and allow me to choose to attend CF events. My whole adult life has been spent speaking at and otherwise attending events with husband… But now I’ve chosen to only be involved by participating in clinical trials. Still helping the CF world, but not as much fun.

    I attended the Teen Advocacy event in DC in 2012 with my oldest. I had to essentially beg to attend with him, and when they finally agreed, it was with the condition that I wear a sticker on my name tag identifying myself as a person with CF. I hated being singled out after 45 years of trying to fit in

    Bottom line, it is not the Foundation’s right to choose with whom I associate, CF or not. And on this anniversary of Martin Luther King’s I Have A Dream speech, I can’t help but think we are in a different era of civil rights limitations.

  5. Donna Germuga says:

    As a healthcare provider (RT) I couldn’t agree more. I am totally about education and protection, but what about general good practices like hand washing and using the paper towel to open a restroom door after washing? It makes far more sense to me to educate people on why we want to prevent infection and general rules about good self care. I am sick about all the changes we have to make and how it will affect our patients and families. There are germs everywhere (not just CFF sponsored events), yes we have to deal with it but going so far in this direction is ,in my opinion, a big mistake. Thanks for writing.

  6. Julie Desch says:

    I completely understand that parents will have a different take on this issue. But, as far as “my ignorance of the guidelines,” let me assure you that I have read every one of them, as well as the accompanying text and looked the the references given. There are actually NO data to support this draconian measure. Every article cited by the committee discusses cross-infection in one of three situations: 1) a health care setting such as a clinic or hospital, 2) the CF camps of old, before any attempts at cross infection control were enforced–where kids with CF shared food, treatment rooms, tents, and were not even given basic hand hygiene advice (no offense intended, this was before we knew better), and 3) cases of siblings with CF living together. There is no specific evidence of cross infection in a setting other than these three situations.

    The point of my post is that I want to make my own decision about what I do. And I want every other adult to be able to make their own as well…and every parent of a minor to make the decision for their kid. The CFF is not in the business of making decisions. It is there to provide education and recommendations, as well as to raise a ton of money.

    Exactly how am I being selfish and disrespectful of others? Those “others” get to decide for themselves whether to go to an event, right? I am not forcing my bugs on anyone. The real disrespect is coming from the Foundation, as they do not trust us to make our own decisions.

  7. Julie Desch says:

    Thank you…it’s good to hear that others in healthcare agree with me.

  8. Sue Stayton says:

    I like what you wrote. I am the mother of a CF patient. She has enough self-esteem issues, without the foundation pointing out that she is a diseased person who shouldn’t have contact with others. I have spent the last 22 years encouraging my daughter to be herself, don’t let CF hold her back, and drilling into her head she is “normal” (whatever that is) and can do whatever she chooses to do with her life. I just want her to live it! This new policy just feels like a setback.

    While I am extremely grateful for all of the research and education the CFF provides and have met many good people while doing fundraising and serving on CF committees, I really have an issue with the boundary they have over stepped.

    Thank you for writing!

  9. Julie Desch says:

    Yes, this policy certainly does reinforce the idea that we are abnormal and should fear each other.

  10. Leanne says:

    I’m not eliquent with words so I will say that Erin said it best. Not everyone is responsible enough to NOT go around any other CFers if they have a bug that doesn’t need to be shared. It is selfish to disregard other CFers rights too. You obviously don’t have a problem being around other CFers but that’s not the case with everyone. I’m a parent to a CFer. If my daughter wants to play with another CF kiddo, I choose no. The other kids parent(s) may be content with their child playing with mine, but I’m not.

  11. Carrie says:

    Julie, Just got led to your blog for the first time through Ronnie’s. As the parent of a 4 year old w CF, I respectfully LOVE this!! I cringe every time I see these guidelines. This past year a friend of mine who is a CFer well into his 30’s was not going to attend our local Great Strides because of a letter he received concerning his b. cepacia (which he’s been managing for years). He’s been coming every year, he and his team stay in a completely different area of the park without entering the main area (near food, registration table, etc). His team brought in a huge chunk of our walks total this year, after he had a really rough year. Thankfully I and others were able to encourage him into coming and it was so GREAT to see him! No, my daughter didn’t get near him, which I even hate that I have to do that. The day he is “forbidden” to be there is the day our team will no longer be there either. I do think the CFF is an amazing foundation and we support them, but not at the expense of making the very ones they’re trying to help feel like outcasts. When it comes to protecting our daughter we try to use logic, sense, and a little bit of caution…but not fear!

  12. Robin says:

    I just want to say a few more words and reach out to the other moms Erin and Leanne. I have been a CF mom for 31 years and I suspect that you have much younger children. In an earlier era before the strict cross infection guidelines CF families were open to sharing with each other and children played and made deep friendships. We had the great fortune to be a part of that era. We made very important CF friends at that time who are still in our lives and among our most loved friends. If that was now these precious relationships may never have happened because we may have been too fearful to meet.

    Since we had already made these friends as time went on we established reasonable behaviors to limit possible exposure to each other’s bugs and were responsible in our care for each other. There has been nothing dangerous in our knowing and sharing with our CF friends. There is no reason that all other CFers and their families can not teach each other how to be safe with each other and respect the need to be healthy. It seems to me that there is some myth that exists in the CF world that “deadly bugs” residing on someone with CF are poised and ready to pounce upon another with CF in an instant. With this pounce is a deadly blow that surely will cause their demise.

    It has made me so sad that parents have had to raise their children in a climate of intense fear of other CF children. I do not believe in this myth that seems so prevalent. I do believe that there is a chance, a very small chance that bugs may be shared without good hygiene so it is important to be careful. But how do you define careful, to me it is not isolation from each other. The benefit of knowing each other and being a part of a responsible and visible community is so valuable I never ever would want to give that up. It has been such a big part of the heart of our CF experience and meant everything to our daughter and how well she has thrived.

    Twenty years ago we invited a young woman with CF from Norway to live with us for a year. She sent us her culture, we sent her Dr. our daughter’s culture. We gave her her own room and she used a separate bathroom. They both did treatments a part from each other. We loved that year. Mette is alive and well in Norway and now has two children of her own. Two years later we invited a woman with CF from Spain to live with us for a summer. We are still forever friends.

    I just need to reach out to you moms and hope that you can calm down this intense fear of each other. Be careful but do not miss out on loving and knowing each other. CF people are the best and your children will benefit so much from knowing others like them. These friends are the only ones who will know what it is really like to live with this disease. They need each other. And sadly, this isolation will not keep your child from CF illnesses. Bugs exist everywhere…….kids who never meet another with CF get sick, gravely sick, anyway…..keeping them apart in no way guarantees they will not get bad bugs.

    Think this through………….please………imagine a community of smart people who teach their children about being responsible with good hygiene and who have a caring close community of friends with whom they can share their darkest secrets unlike with the other kids they will know. This has been our life for 30 plus years………I want you to have it too………..I wish the CFF trusted us as intelligent people who could be responsible and make our own choices of who and how we connect with each other without this myth of intense fear………….If they nurtured this type of attitude they would be so much more successful and so would the rest of us be more of a community that could work together………..

  13. Kerri Doherty says:

    I agree 100% with what you wrote. I am a 33 year old CFer and have a hard time understanding the policies. I grew up in the time of cf camps and had long lasting friendships. I am sad to think kids today are isolated and can not be around each other. There is a huge divide between parents of CFers and CFers themselves. Parents generally seem to think the rules are great and most CFers I have talked to hate them. I think the rules are somewhat ridiculous. I am wondering if their is any data that supports this. We quit having camps, separate hospital rooms, and clinic areas were all started in the 90’s. Masks and gowns were required more recently but has any of this shown to decrease these bugs in the population? I don’t think it is really feasible, the bugs probably live on the surface of everything. You can pick them up in the soil around you. It just seems extreme to me. I hate feeling like a leper.

  14. Joanne Girard says:

    i have read your article and well, it seems you are right. they can’t tell us what to do but rather give us guidelines as to how to keep us healty. it’s funny they give this one person rule, but do they forget we live in the real world. We run into CFer’s all the time. Either knowingly or unknowingly. Do they not think we cross contaminate at Walmart? I mean really? I think they need to re-write that policy and use words like we advise, or in our opinion, i think then it would not come across as so harsh. i think the CFF means well, but overall, we are all alone. we can’t lean on each other and share a bad moment with one another like a “normal” person. They are making it worse. Thanks for posting this blog.

  15. Bowe Frankema says:

    As someone who’s been on CF Camps for ten years, I know how important it can be to meet someone with CF in real life. Obviously these days this is not recommended, but it’s hard to explain the impact such contact can have on your life. Those weeks have taught me more about living with CF than any doctor, family member or book could ever tell me. For seven days a year I would spent time with kids who truly understood what it was like being different. I learned to accept CF as part of me, and be grateful that I was doing so well compared to others.

    Over the last years the segregation policy has indeed made ANY contact between people with CF seem like something completely crazy and dangerous. One of my closest friends has CF and we’ve been seeing each other for 10 years now. We met each other on CF Camp and even dated for a short while. We don’t have a single shared bug. I’m not trying to say segregation is not needed, or that there are no risks, all I’m trying to say that there is a grey area in all of this. Give people the freedom to make their own decisions (to a certain level) and respect them.

    There was a reunion for the CF Camps a few years ago, and some of the people attending wrote a blogpost about it. The reactions of some of parents/CFers opened my eyes on how the segregation rules have changed the CF Community. “You can kill my children by cross-infecting each other and spreading resistant bugs”.

    It’s exactly this sort of black/white thinking that needs to stop. Living with CF is hard enough by itself, and having the freedom to make your own choices and take your risks can help tremendously with going through life happy. Even if you don’t agree with these decision you don’t have the right to pass judgement on those who feel different. Especially because like Julie points out, there are so many unknown factors regarding the risks of cross infection.

  16. Donna says:

    I agree with the feelings of the CF community. It is your right to make up your mind if you want to attend a function or not. Ronnie, you are so right about the CF clinics. Obviously, not one person at time goes to the doctor. There are precausions to take in any situation. Signing a form is all they have to do to protect themselves from anyone that would sue. Good blog!

  17. deirdre says:

    I live this! My child with CF is 3.5 and it annoys me so much that people with CF aren’t supposed to be around eachother. I get that these bugs can cause illness, but I’ve heard of some CF kids who are basically in a bubble and they still culture MRSA and Pseudo at young ages. I take mybkids to al the places “they” say to avoid (Mall play areas, etc) and he is so healthy. We use good hygiene and always wash hands well after we leave.

    I also had the pleasure if meeting the Stenzel twins at our parent ed day and they put a lot if this into perspective for me. Best wishes and health to you all!

  18. Pablo says:

    If I may, I would like, if possible, to try to address the responses of those who are clearly very concerned and caring mothers, as well as others who live in fear of Cystic Fibrosis. First, I am almost afraid to admit it, but I am almost 69 years old. I am not dead, and I did not die when I was supposed to. Still it seems extraordinarily unfair, even for mothers, to say that we adults are lucky to have lived so long and that makes us somehow insensitive to others with this illness because we dare to push back against a mandate that insults and demeans us as a class of genetically different people.

    We fully realize that the CFF is intending to act in our “best interest”, but its action seems reactionary and not carried out with fair consultation or full due process. The CFF has an advisory Infection Control Policy committee, but no advisory psychosocial committee. It has a board of Trustees, but no advisory committee of adults (ironically, the very product of its intended mission). The CFF is focused on getting the magic pill, but in the process, has it neglected and ignored what we would call the rest of our “quality of life”.

    I hope that those who immediately judge us as out of place understand that we are not acting thoughtlessly or with disregard for your children or any child. We are in fact trying to do what I project you want as much as we — to ensure that your children have a normal and full quality of life as well as quantity of life.

    None of us will ever completely escape the curse of a bad gene— even if we get the ‘magic’ pill. But would you agree that we all have the same right to pursue “life, liberty, and happiness.” Neither we who go before, nor your children who will come, should be stigmatized and excluded as a class. Your children will have enough to contend with, without the national CF Foundation representing them to the world as dangerous, and thereby setting an international example that they can and should be excluded. Are we dealing with unforetold, unintended consequences: that this action, this mandate, this precedent could be taken further, well beyond one CF person and another, to any number of other situations that could become devastating for all of us as a group or for any one of us singularly. Should we learn from the pain the HIV community has endured. Why not wonder if misunderstanding and misinterpretation of this precedent will not ban CF persons from any place where a susceptible person (immunosuppressed, for example) might be present: elevators, airplanes, classrooms………. Why not question whether in fact what the CFF is doing is a violation of the American Disabilities Act.

    We will not cause your child to become infected with a pathogen. You will always retain the right to protect your child by keeping her/him away from any harm you see or any ‘threatening’ social interactions. And we would never deny you that right, which I would call sacred. In the same instant, our right to attend a meeting should not be surrendered because a few people leading a highly visible organization stun us all with a certain arrogance by suddenly announcing that we CF persons must be dismissed because we are all potentially dangerous.

    The CFF can and should do better. Its new policy is inexpensive (cheap?) and effortless. It easily mandates that all CF persons, except the one (they choose—who is they?), must stay away from their group. Now at the exclusive CFF meetings, they will not need to be bothered with hygiene measures that they previously advanced to prevent the spread of Germs. The new meetings will be much more relaxed and carefree for everyone attending without CF since no one will have so much hygiene on their mind to trouble them — except the one CF person,who no doubt will be a real party pooper reminding everyone of basic public hygiene.

    No, the CFF can and should do better. It should do its dead level best as it has done to educate the entire CF community about optimal, practical hygiene (optimal is not living and dying in a bubble like David Vetter) to minimize the risks of cross infection. It should adopt a policy such that if participation must be limited, only specific individuals with known cause are restricted and not all CF persons as a class. It should adopt and enthusiastically encourage every person, with or without CF, to be exemplar in established optimal hygiene practices. It should seek parallel expert advise from the psychological and sociological sciences that parallels any expertise that could even potentially threaten the overall well being of any member of our community. It should seek input from the adult CF community. Its concern should be on educating, not mandating. It is encouraging that examples of such policies have been rationally developed and exercised among other CF organizations both here and abroad.

    The Board of Trustees of the US CFF should take an active role in correcting what its “CFF Leadership got Wrong.”

  19. Julie Desch says:

    Thank you Paul for you wise and heartfelt words.

  20. Katie says:

    Pablo, thank you for so eloquently and passionately expressing the feelings of so many of us CF adults. Do not apologize for 69 years, celebrate it!

  21. Erik says:

    My wife has CF and is 31 years old. As Julie stated so well, we think these restrictions are ridiculous and insulting. As stated by others, the CFF is free to ‘recomend’ that people with CF not attend, and those people or parents are free not to attend. I can even understand requesting patients with cepacia not attend because of the high risk of introducing a currently ‘rare’ bug, but to ban people with CF in general is the wrong approach. These events aren’t lovefests. They are conferences and fundraisors. I’ve yet to go to a CFF event where an activity was spin the bottle with the CFers. Reasonable precautions (many of which we should all take anyway in public) will reduce cross infection to a very small amount. If a few dozen CFers attend a fundraiser and sit in the same auditorium for 2 hours (and dont sit there coughing on each other intentionally), a superbug will not emerge to wipe out civilization.

    If you don’t want your child to have the very small risk of cross infection from another CFer at a CFF event, then don’t bring your child. With or without these rules, YOUR child won’t be there because you made that choice, and that is fine. But for adult CFers that fully comprehend the small risk and want to attend, you should not be calling them selfish or ignorant for wanting to make that choice themselves.

    I will also add that my wife has been good friends with another CFer for years. They have met in person several times, and been very careful about cross infection. But they made the choice that the personal real world contact with each other was more beneficial to their well being than the risk of cross infection. At first when she wanted to meet him in person, I too was worried about possible cross infection – but seeing how much it means to each of them to have that relationship, the small risk is a small price to pay.

    Living with CF is a balancing act. Patients must balance life with their health. As parents, or patients, or spouses, we could choose to push to lock the patient in a bubble, not let them out in public, not let them have stuffed animals or pets, make them wear bio masks all the time, or maybe do PT every hour – but what quality of life would that lead to? No one here is trying to disrespect parents who want to protect their young children. We are speaking from a different perspective to help protect other aspects of your child’s life.

    Thanks for writing Julie.

  22. Julie Desch says:

    Thank you Erik for your very thoughtful “spouse” perspective.

  23. Melony says:

    Thank you Julie for being so honest, forward and public about your opinion and thoughts. You have perfectly stated what I have been feeling for months. My only other addition to this is my own gut belief that this policy very officially stigmatizes the entire community – both adults and children alike. I remember expressing my opinions on CysticLife some months ago with a fear in my gut that I would be doing something wrong to speak against the CFF. I do believe and have said all along that this has more to do with the CFF protecting themselves – it is a medical legal issue. Truly, to really protect the CF patient they would have to dissolve all clinics.

  24. Mike says:

    The CFC in Canada has an even stricter policy, people with CF aren’t even officially invited.

    I think you are missing the point, they aren’t mandating what you can and cannot do in your personal life. They are just making sure that their ass is covered for liability reasons. They cannot advocate people congregating when it might spread infection. Period. If someone got infected they (or their family) might not take the “We knew the risks” approach and could sue for millions in damages if they ended up dying.

    The stuff for outside of events is also purely a liability thing. As an advocacy group that is there to spread awareness, they have to advocate the measures to keep people safe, especially regarding personal life. It would be horribly irresponsible of them not to advocate safety and to promote negligence. If you personally choose to ignore those recommendations, that is perfectly fine for you and the friends you choose to ignore them with. But they as an organization have to recommend them.

    Don’t forget, the people at the top know that these policies hurt the community spirit. They are (if it’s like Canada) brothers, sisters, fathers, mothers, cousins, aunts, uncles etc. of those with CF. They understand the impact, but they have to make such recommendations.

  25. kristen says:

    Julie, great post! Thank you for sharing your thoughts on this. I feel very similarly. It’s nice to have someone in the CF blogging community address this issue!

  26. Phil says:

    Dear Julie, I applaud you all of your responders for opening this discussion where it matters most–among patients and families. I am a CF care provider and was alerted to this by a coworker who knows of my objections to the newer and the older infection “control” guidelines as well as some other emanations from the national foundation. Each of my thoughts has been expressed better than I would have done, particularly those describing the benefits of contact between persons with CF, so I’ll emphasize one point and throw a related bone of contention on the fire.

    What is missing is ANY quantification of risk, and this could be discussed from the literature cited. It appears to require extremely close and prolonged exposure for relevant organisms to be transmitted between persons with cystic fibrosis, well beyond getting closer than six feet, somewhere in the same meeting room, or attending the same school. The camp study showed how remarkably few episodes of possible transmission occurred with weeks of tight quarter cohabitation decades before ‘hand sanitizer’ was in the everyday vocabulary of CF families.

    The other issue that I’ve never come to accept is the “Mandate” that patients old than 17 or 20 not be managed in a pediatric clinic. I fully support the development of adult CF clinics and I put significant effort into promoting them to our patients. What I don’t accept is that patients are incapable of making these choices for themselves (this mandate is enforced by threats to accreditation of pediatric centers, often leading to centers refusing to care for this age group).

    This said, I am very grateful for the accomplishments of the CFF and I will continue to participate in the local chapter activities and contibute monetarily.

  27. Pablo says:

    Dear Phil,
    We deeply appreciate your support and recognize that it take a bit of courage for a center director to speak out. We couldn’t agree more with the points you make and hope to give them more voice shortly.
    Thanks and admiration,

  28. Julie Desch says:

    Thanks for your support! It really helps to hear that CF caregivers understand our plight.

  29. Robin says:

    Yes Phil, thanks for adding to Julie’s discussion. You are right, putting all of this cross infection concern into a context that is factual as to risks is so important. Families need to know the actual risks of CFers being together not just a mandate that they should not be together. The fear that has been created in this community is a real shame.

  30. Bowe Frankema says:

    thank you Phil.. it means a lot to see someone in your position share his insights onto the current situation. I’m really glad you did 🙂

  31. Tina says:

    I’m gonna have to make a comment here about some of the parents to cfers on here that are in favor of this. I do fully understand your concern. I have cf myself but the brutal truth is that if you wanted your child to avoid every single thing in this world that has the potential to make them sick your gonna have to place them in a bubble. The fear of getting sick from other cfers is, yes maybe a justified fear but it’s a fear amongst MANY MANY other things that could potentially make us sick. Protecting ourselves is good but I think that sometimes we really do go over and beyond for the sake of protecting and sometimes that breads a whole lot of fear. And i think this document is an example of it. Although these fears might be justified, they do have the potential to really hurt them emotionally. I have lived in fear my entire life because of the dangers I was taught and the things to avoid and if you trully follow what everyone has ever told you to avoid with cf your gonna end up avoiding everything. That’s what I ended up doing and I must say that it’s really difficult to enjoy life with so much anxiety. So in the end is it really any better? There is just so much a person can realistically do in order to protect themselves and there is a time to let it go.

  32. PJ Dijkstra says:

    As a father of two daughters with Cystic Fibrosis I recognise a lot of the feelings described. We never ever use any of the segregation directives at home as this would be inhumane and nearly impossible to justify (or to execute). The whole idea of segregation is mostly misunderstood and, sadly, leading to more confusion about how viruses, bacteria and fungi survive and distribute in our environment.
    Friends and family members won’t visit us when they have a cold or infection disease, or feel responsible when one of our kids gets hospitalized and give us friendly advise to increase our hygiene performance standard. I fully agree with Pablo that both quality of life and quantity of life should be equally valued within each personal situation. Unfortunately certain decisions could have serious consequences and it is there where the remark of Phil is of importance; knowing the risk requires specific knowledge and awareness to quantise certain risks. Internet is a valuable source however the pharmaceutical scientific information is well hidden and as our world is getting increased complex the real finding out the real truth about this is a difficult task, as a father of two CF patients I am constantly confronted with these kind of issues. Luckily this forum exist to share these thoughts.
    I sincerely hope that both the CFF and the new CF Commmunity will take this up to a new level, Good luck Bowe with your new CF community!

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