0
Point/Counterpoint Editorials |

Counterpoint: Does the Risk of Cross Infection Warrant Exclusion of Adults with Cystic Fibrosis from Cystic Fibrosis Foundation Events? NoRisk of Cystic Fibrosis Cross Infection? No FREE TO VIEW

Steven L. Shepherd, MPH; Eric J. Goodrich, MD; Julie Desch, MD; Paul M. Quinton, PhD
Author and Funding Information

From the School of Medicine (Dr Goodrich) and Department of Pediatrics (Dr Quinton), University of California, San Diego. Mr Shepherd and Dr Desch do not have any professional affiliations.

Correspondence to: Steven L. Shepherd, MPH; e-mail: steveshepherd@cox.net


Financial/nonfinancial disclosures: The authors have reported to CHEST the following conflicts of interest: Dr Quinton’s laboratory research is supported by grant funds from Cystic Fibrosis based non-profit organizations. Mr Shepherd and Drs Goodrich and Desch have reported that no potential conflicts of interest exist with any companies/organizations whose products or services may be discussed in this article.

Reproduction of this article is prohibited without written permission from the American College of Chest Physicians. See online for more details.


Chest. 2014;145(4):680-683. doi:10.1378/chest.13-2406
Text Size: A A A
Published online

In 2011, the Cystic Fibrosis Foundation (CF Foundation) assembled an infection prevention and control committee to update the CF Foundation’s 2003 Infection Control Recommendations for Patients with Cystic Fibrosis.1 In March 2013, acting on a recommendation made orally by committee members and included in the written draft guideline circulated later (Infection Prevention and Control Committee, CF Foundation, written communication, May 19, 2013), the CF Foundation announced a new policy2:

At any CF Foundation-sponsored indoor event, meeting or office, including gatherings such as Foundation chapter committee meetings, only one person with CF may be present. This person will be designated by the Foundation….3 [emphases in original]

The four of us have cystic fibrosis (CF). We all have attended CF Foundation events and believe we should have the continued right to do so. But other reasons lead us to judge the CF Foundation’s new policy as unfounded, misguided, unnecessary, and harmful.

Months after its adoption, the CF Foundation issued a list of 16 papers offering its scientific rationale for the ban.4 The CF Foundation advocates “evidence-based” recommendations.1 So what in these papers supports a ban on the presence of two or more people with CF in public and professional settings where adults behave with constraint?

Along with a great body of other work, the CF Foundation’s 16 listed papers document the person-to-person transmission among people with CF of genetically distinct, difficult-to-treat pathogens, including strains of Pseudomonas aeruginosa and species of Burkholderia.5 The papers also show significant associations between the presence of these organisms and increased risks of morbidity and mortality.

Several of the papers address possible modes of transmission. They show that viable pathogens can be recovered from the hands, bed linens, and clothes of hospitalized patients with CF; from room air hours after a patient with CF has left; and from dry surfaces 2 days after deposition. None of these studies shows actual patient-to-patient transmission, and all include statements similar to that of Festini et al,6 who noted that while the transmission of P aeruginosa as far as 2 m by coughing or speaking was possible, “its probability is low.”

Five of the papers report the use of epidemiologic or genomic methods to demonstrate person-to-person transmission and to investigate its setting. Each of these studies found that transmission most likely occurred as the result of nosocomial exposure, and none found evidence of transmission due to social contact outside the medical setting. Aaron et al,7 for instance, studied transmissible P aeruginosa and identified seven new cases over a 3-year period, yielding an incidence of 7.0 per 1,000 person-years (a rate the authors termed “relatively low”). The only risk factor shared by the seven patients was prior hospitalization or attendance at a CF clinic, and all seven “denied social contact with any other patients with CF.”

That the greatest risk of transmission comes from nosocomial exposure is consistent with earlier work.1,5 With some very specific exceptions, so too is the failure to find evidence of transmission by social contact outside the medical setting. The first of these exceptions comprises evidence of person-to-person transmission at CF summer camps held under conditions that prevailed in the last century. In the most influential of the many camp studies, the campers were almost all children; slept together in close quarters for weeks at a time; performed chest physiotherapy on each other; were often known beforehand to harbor the pathogens in question; shared dining and personal care items; kissed, hugged, and danced together; and only infrequently washed their hands.8,9 Under these circumstances, transmission occurred and was significantly associated with the conditions and behaviors described. But these conditions and behaviors do not pertain in the settings encompassed by the CF Foundation ban.

The second exception derives from studies in the early 1990s. LiPuma et al10,11 showed transmission among participants in a 4-week educational program in which young adults were together for seminar sessions, meals, recreational activities, a 7-h bus ride, twice-daily car rides of 45 min each, and long evenings in the same apartment. Govan et al12 showed transmission among a group of adults that included sexual partners, siblings, camp attendees, hospitalized patients kissing under the mistletoe, close friends with “protracted social contact,” and nine patients who regularly exercised together in a small space. Neither research group mentioned any effort to mitigate risk. These works are repeatedly cited as evidence of transmission by social contact.1,5,7-9 But, again, the conditions and behaviors they describe have no bearing on the CF Foundation ban.

So on what grounds did the infection prevention and control committee recommend the ban? In their draft guideline, the committee offers this rationale (Infection Prevention and Control Committee, CF Foundation, written communication, May 19, 2013):

CF indoor events

Given the risks of person-to-person spread of CF pathogens within healthcare and non-healthcare settings, it is felt that there are also risks of transmission of CF pathogens between people with CF who attend indoor events at the same time.

They had a feeling.

The preceding passage goes on to note that the risk the committee sought to address “cannot be quantified.” Whether the risk is greater than the risk one might incur from driving to such an event, they do not know. The evidence indicates the risk is low.6,7,9,13 But to focus only on risk—to note only that something is possible and to ignore the opportunities for mitigation and the possible benefits for which one takes a risk—is to present a one-sided equation. We do not make decisions based on risk alone. And in truth, the size of the risk is irrelevant.

In the United States, an 18-year-old can choose to join the military and go to war. War is risky. But adults in our society have the right to take this risk, and some, weighing the relevant factors, will choose to do exactly that. Others, weighing the same factors, will decide otherwise. In either case, the decision is theirs.

In contrast, parents make their children’s decisions. Founded by parents in 1955, when there essentially were no adults with CF, the CF Foundation could only have begun as an organization accustomed to making decisions for others. As the CF population continued for decades to consist overwhelmingly of children, it remained understandable that the CF Foundation would grow comfortable in the habit of making decisions for others. But the demographics of CF are changing. Adults now or soon will comprise one-half or more of the CF population in the United States.14 The CF Foundation says its ban “was created in the best interest” of people with CF.15 But for one-half of that population, the decision as to what is in their “best interest” belongs not to the CF Foundation but to the individuals themselves. There are no defensible grounds for the CF Foundation to take for itself a competent adult’s right to assess the potential risks and benefits of attending an event at which other people with CF may be present and to act accordingly, and to maintain otherwise can best be characterized as misguided.

Moreover, the combined use of such practices as prescreening, implementation of better hand and respiratory hygiene, and the maintenance of safe distances can render safe even settings as putatively dangerous as camps.16 Other CF-related organizations have managed to incorporate practices like these into policies for meetings and conferences that enable safe attendance by adults with CF,17,18 and the CF Foundation’s failure to do likewise means only that the CF Foundation failed, not that a ban was necessary.

With the closing of the CF camps,9 the implementation of ever more rigorous and visible infection control measures, and an endless barrage of CF Foundation literature, patients with CF and their families have been made aware of cross-infection risks to the point of being terrified.19 The ban now compounds that fear. By conveying to people with CF that they are unfit to be around people like themselves, that they are a source of contagion, and that they are a danger to others, the ban damages what for many patients is an already fragile sense of self-worth. For adults, the ban carries the additional message that they are incompetent to make their own decisions. And all this, it does publicly.

Nor is the ban’s potential for harm limited to patients. Since its inception, the CF Foundation has done incalculable good for people with CF and in the process inspired for itself vast amounts of good will. To now invoke a policy that declares as personae non gratae the very people on whose behalf the CF Foundation claims to advocate creates a paradox that can be lost on few. Awareness of this irony will eventually spread and thereby do we fear that the ban puts at risk the CF Foundation’s hard-won reputation and its own well-being.

We recommend that the CF Foundation revoke its ban. In its place, we recommend development of a new policy that better balances possible benefit against probable harm, and that for models the CF Foundation—together with a diverse group of adults with CF—look to those organizations that now facilitate attendance at their events by people with CF.17,18

For people with CF, the policy we envision will embrace a balance between safety and the opportunity to participate in CF Foundation events. For the CF Foundation, work toward such a policy offers the opportunity to remind itself of the greater goal for which the CF Foundation was built. That goal is not just to add to an accountant’s tally of tomorrows. Rather, the goal is to help young people with CF use their tomorrows to become healthy, functioning adults and to achieve what all parents aspire to for their children: to go responsibly and productively into the world, making choices, accepting challenges, and treating others with respect and dignity.

Saiman L, Siegel J; Cystic Fibrosis Foundation Consensus Conference on Infection Control Participants. Infection control recommendations for patients with cystic fibrosis: microbiology, important pathogens, and infection control practices to prevent patient-to-patient transmission. Infect Control Hosp Epidemiol. 2003;24(suppl 3):S6-S52. [CrossRef]
 
CF Foundation updates infection prevention and control policy for all Foundation events and meetings. Cystic Fibrosis Foundation website. http://www.cff.org/aboutCFFoundation/NewsEvents/3-14-Infection-Prevention-Control-Policy-Update.cfm. March 14, 2013. Accessed August 27, 2013.
 
CF Foundation’s infection prevention and control policy. Cystic Fibrosis Foundation website. http://www.cff.org/aboutCFFoundation/InfectionPreventionControlPolicy/. March 29, 2013. Accessed August 27, 2013.
 
References for CF Foundation’s updated infection prevention and control policy. Cystic Fibrosis Foundation website. http://www.cff.org/UploadedFiles/aboutCFFoundation/InfectionPreventionControlPolicy/References-for-CFF-IPC-policy.pdf. April 2013. Accessed August 27, 2013.
 
LiPuma JJ. The changing microbial epidemiology in cystic fibrosis. Clin Microbiol Rev. 2010;23(2):299-323. [CrossRef]
 
Festini F, Taccetti G, Galici V, et al. A 1-m distance is not safe for children with cystic fibrosis at risk for cross-infection withPseudomonas aeruginosaAm J Infect Control. 2010;38(3):244-245. [CrossRef]
 
Aaron SD, Vandemheen KL, Ramotar K, et al. Infection with transmissible strains ofPseudomonas aeruginosaand clinical outcomes in adults with cystic fibrosis. JAMA. 2010;304(19):2145-2153. [CrossRef]
 
Honicky R, Harden D, Hsu J, et al; Centers for Disease Control and Prevention (CDC). Pseudomonas cepaciaat summer camps for persons with cystic fibrosis. MMWR Morb Mortal Wkly Rep. 1993;42(23):456-459.
 
Pegues DA, Carson LA, Tablan OC, et al. Acquisition ofPseudomonas cepaciaat summer camps for patients with cystic fibrosis. Summar Camp Study Group. J Pediatr. 1994;124(5 pt 1):694-702. [CrossRef]
 
LiPuma JJ, Dasen SE, Nielson DW, Stern RC, Stull TL. Person-to-person transmission ofPseudomonas cepaciabetween patients with cystic fibrosis. Lancet. 1990;336(8723):1094-1096. [CrossRef]
 
LiPuma JJ, Marks-Austin KA, Holsclaw DS Jr, Winnie GB, Gilligan PH, Stull TL. Inapparent transmission ofPseudomonas (Burkholderia) cepaciaamong patients with cystic fibrosis. Pediatr Infect Dis J. 1994;13(8):716-719. [CrossRef]
 
Govan JRW, Brown PH, Maddison J, et al. Evidence for transmission ofPseudomonas cepaciaby social contact in cystic fibrosis. Lancet. 1993;342(8862):15-19. [CrossRef]
 
Panagea S, Winstanley C, Walshaw MJ, Ledson MJ, Hart CA. Environmental contamination with an epidemic strain ofPseudomonas aeruginosain a Liverpool cystic fibrosis centre, and study of its survival on dry surfaces. J Hosp Infect. 2005;59(2):102-107. [CrossRef]
 
 Cystic Fibrosis Foundation Patient Registry, 2011 Annual Data Report. Bethesda, MD: Cystic Fibrosis Foundation; 2012.
 
Frequently asked questions about the CF Foundation’s infection prevention and control policy. Cystic Fibrosis Foundation website. http://www.cff.org/aboutCFFoundation/InfectionPreventionControlPolicy/FAQs/. March 14, 2013. Accessed August 31, 2013.
 
Greenberg D, Yagupsky P, Peled N, Goldbart A, Porat N, Tal A. Lack of evidence of transmission ofPseudomonas aeruginosaamong cystic fibrosis patients attending health camps at the Dead Sea, Israel. Isr Med Assoc J. 2004;6(9):531-534.
 
CFRI infection control policy. CFRI website. http://www.cfri.org/pdf/CFRI_Infection_Control_Policy.pdf. April 26, 2013. Accessed September 2, 2013.
 
Cross infection policy—people with CF attending CFANZ meetings. Cystic Fibrosis Association of New Zealand website. http://www.cfnz.org.nz/about-cystic-fibrosis/living-with-cystic-fibrosis/hygiene-cross-infection/. Accessed January 15, 2013.
 
Geddes D. Segregation is not good for patients with cystic fibrosis. J R Soc Med. 2008;101(suppl 1):S36-S38. [CrossRef]
 

Figures

Tables

References

Saiman L, Siegel J; Cystic Fibrosis Foundation Consensus Conference on Infection Control Participants. Infection control recommendations for patients with cystic fibrosis: microbiology, important pathogens, and infection control practices to prevent patient-to-patient transmission. Infect Control Hosp Epidemiol. 2003;24(suppl 3):S6-S52. [CrossRef]
 
CF Foundation updates infection prevention and control policy for all Foundation events and meetings. Cystic Fibrosis Foundation website. http://www.cff.org/aboutCFFoundation/NewsEvents/3-14-Infection-Prevention-Control-Policy-Update.cfm. March 14, 2013. Accessed August 27, 2013.
 
CF Foundation’s infection prevention and control policy. Cystic Fibrosis Foundation website. http://www.cff.org/aboutCFFoundation/InfectionPreventionControlPolicy/. March 29, 2013. Accessed August 27, 2013.
 
References for CF Foundation’s updated infection prevention and control policy. Cystic Fibrosis Foundation website. http://www.cff.org/UploadedFiles/aboutCFFoundation/InfectionPreventionControlPolicy/References-for-CFF-IPC-policy.pdf. April 2013. Accessed August 27, 2013.
 
LiPuma JJ. The changing microbial epidemiology in cystic fibrosis. Clin Microbiol Rev. 2010;23(2):299-323. [CrossRef]
 
Festini F, Taccetti G, Galici V, et al. A 1-m distance is not safe for children with cystic fibrosis at risk for cross-infection withPseudomonas aeruginosaAm J Infect Control. 2010;38(3):244-245. [CrossRef]
 
Aaron SD, Vandemheen KL, Ramotar K, et al. Infection with transmissible strains ofPseudomonas aeruginosaand clinical outcomes in adults with cystic fibrosis. JAMA. 2010;304(19):2145-2153. [CrossRef]
 
Honicky R, Harden D, Hsu J, et al; Centers for Disease Control and Prevention (CDC). Pseudomonas cepaciaat summer camps for persons with cystic fibrosis. MMWR Morb Mortal Wkly Rep. 1993;42(23):456-459.
 
Pegues DA, Carson LA, Tablan OC, et al. Acquisition ofPseudomonas cepaciaat summer camps for patients with cystic fibrosis. Summar Camp Study Group. J Pediatr. 1994;124(5 pt 1):694-702. [CrossRef]
 
LiPuma JJ, Dasen SE, Nielson DW, Stern RC, Stull TL. Person-to-person transmission ofPseudomonas cepaciabetween patients with cystic fibrosis. Lancet. 1990;336(8723):1094-1096. [CrossRef]
 
LiPuma JJ, Marks-Austin KA, Holsclaw DS Jr, Winnie GB, Gilligan PH, Stull TL. Inapparent transmission ofPseudomonas (Burkholderia) cepaciaamong patients with cystic fibrosis. Pediatr Infect Dis J. 1994;13(8):716-719. [CrossRef]
 
Govan JRW, Brown PH, Maddison J, et al. Evidence for transmission ofPseudomonas cepaciaby social contact in cystic fibrosis. Lancet. 1993;342(8862):15-19. [CrossRef]
 
Panagea S, Winstanley C, Walshaw MJ, Ledson MJ, Hart CA. Environmental contamination with an epidemic strain ofPseudomonas aeruginosain a Liverpool cystic fibrosis centre, and study of its survival on dry surfaces. J Hosp Infect. 2005;59(2):102-107. [CrossRef]
 
 Cystic Fibrosis Foundation Patient Registry, 2011 Annual Data Report. Bethesda, MD: Cystic Fibrosis Foundation; 2012.
 
Frequently asked questions about the CF Foundation’s infection prevention and control policy. Cystic Fibrosis Foundation website. http://www.cff.org/aboutCFFoundation/InfectionPreventionControlPolicy/FAQs/. March 14, 2013. Accessed August 31, 2013.
 
Greenberg D, Yagupsky P, Peled N, Goldbart A, Porat N, Tal A. Lack of evidence of transmission ofPseudomonas aeruginosaamong cystic fibrosis patients attending health camps at the Dead Sea, Israel. Isr Med Assoc J. 2004;6(9):531-534.
 
CFRI infection control policy. CFRI website. http://www.cfri.org/pdf/CFRI_Infection_Control_Policy.pdf. April 26, 2013. Accessed September 2, 2013.
 
Cross infection policy—people with CF attending CFANZ meetings. Cystic Fibrosis Association of New Zealand website. http://www.cfnz.org.nz/about-cystic-fibrosis/living-with-cystic-fibrosis/hygiene-cross-infection/. Accessed January 15, 2013.
 
Geddes D. Segregation is not good for patients with cystic fibrosis. J R Soc Med. 2008;101(suppl 1):S36-S38. [CrossRef]
 
NOTE:
Citing articles are presented as examples only. In non-demo SCM6 implementation, integration with CrossRef’s "Cited By" API will populate this tab (http://www.crossref.org/citedby.html).

Some tools below are only available to our subscribers or users with an online account.

Related Content

Customize your page view by dragging & repositioning the boxes below.

Find Similar Articles
CHEST Journal Articles
PubMed Articles
  • CHEST Journal
    Print ISSN: 0012-3692
    Online ISSN: 1931-3543