From the Department of Medicine and Pediatrics (Dr Jain), Feinberg School of Medicine, Northwestern University; Department of Pediatrics (Dr Saiman), Columbia University Medical Center; Department of Infection Prevention and Control (Dr Saiman), New York-Presbyterian Hospital; Dartmouth Institute for Health Policy & Clinical Practice (Ms Sabadosa), Geisel School of Medicine; and the Department of Pediatrics and Communicable Disease (Dr LiPuma), University of Michigan Medical School.
Correspondence to: Manu Jain, MD, Northwestern University, 240 E Huron M-332, Chicago, IL 60611; e-mail: firstname.lastname@example.org
Financial/nonfinancial disclosures: The authors have reported to CHEST the following conflicts of interest: Dr Saiman receives funding from the CF Foundation to provide expertise in infectious diseases and microbiology. Ms Sabadosa is a full-time, 10-year employee of the Cystic Fibrosis Foundation. Drs Jain and LiPuma have reported to CHEST 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.
Authors on both sides of this debate agree that evidence exists for person-to-person transmission of virulent pathogens between individuals with cystic fibrosis (CF) in non-health-care settings that has resulted in worsened outcomes.1,2 Our disagreement stems from each side’s perspective on the relevance of that evidence to the recommendation that only one individual with CF be allowed to attend Cystic Fibrosis Foundation (CF Foundation)- or CF center-sponsored indoor events.
Mr Shepherd and colleagues2 argue that pathogen transmission has been demonstrated only in social settings under conditions that are not relevant to “public and professional settings where adults behave with constraint.” They further state that the risk, however great, is irrelevant, using the analogy of an 18-year-old making a choice to go to war. Fighting in a war may be an unfortunate metaphor for attending a CF Foundation-sponsored indoor event, but Mr Shepherd and colleagues,2 perhaps unwittingly, highlight the potential life-threatening risk that informs the CF Foundation’s policy.
The CF Foundation has a low tolerance for risk and is unwilling to host indoor events wherein two or more individuals with CF can potentially transmit a virulent pathogen. This perspective is shared by The United Kingdom Cystic Fibrosis Trust and Cystic Fibrosis Canada; both organizations make similar recommendations.3,4 Like these peer organizations, the CF Foundation is committed to pursuing opportunities to help people with CF participate in events and activities electronically, conveying voices and images, but leaving unintended touches and coughs out of the risk calculation.
We agree that individuals with CF should decide what is in their own best interest. However, individuals with CF and their families are variably informed about infection risk,5,6 have different levels of tolerance for such risk, and are likely to view the new guidelines differently. The Guidelines Committee included an adult with CF and three parents of children with CF, one of whom is an author of this commentary. During the public comment period, many individuals with CF and their families voiced support for the recommendation currently being debated.
We know this policy comes at a cost. Many years ago, it was difficult for the CF Foundation to exclude individuals infected with Burkholderia cepacia from CF Foundation- and CF center-sponsored events, although this policy was met with relief by many individuals with CF. We now face the difficult task of expanding this policy to everyone with CF regardless of pathogen status. Mr Shepherd and colleagues2 object to this policy as paternalistic overreaching by the CF Foundation. Yet their belief that such a policy will necessarily damage the “already fragile sense of self-worth” of individuals with CF is no less patronizing. One’s sense of self-worth is neither defined by nor equated with one’s tolerance for risk.
We understand that the new recommendation will be an adjustment for individuals with CF who have participated for years at CF Foundation- or center-sponsored family nights, education days, and benefit events. However, we emphasize that the CF Foundation’s policy is informed by peer-reviewed data and represents the organization’s commitment to responsibly promote the health and well-being of people with CF.
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