Over the past decade, researchers have taught us so much about the risks of people with CF spreading dangerous, life-threatening bacteria to one another. As I work side by side with many dedicated friends to find a cure for cystic fibrosis and improve the quality of life for people with the disease, protecting and promoting the health of people with CF is always at the top of my mind.
Based on the most recent medical research on the risk of cross-infection among those with cystic fibrosis, earlier this year we updated our infection prevention and control policy for events and activities we sponsor. We now recommend that only one person with CF be in attendance at indoor Foundation gatherings. We know that this change has been concerning for people with CF and their families.
I want to take a moment to share with you the reasons for changing the policy and emphasize our commitment to finding new ways to foster the participation of people with CF in our shared mission.
Working together for nearly two years, a Foundation-sponsored committee of experts in CF care and infection prevention and representatives of the CF community conducted an in-depth review of the latest medical research. They concluded that the data show there is a greater risk of people with CF spreading destructive bacteria to others with CF than was previously understood.
We know these bacteria — such as Pseudomonas aeruginosa and methicillin-resistant Staphylococcus aureus (MRSA) — can lead to worse symptoms and can speed decline in lung function. Research also suggests that the risk of airborne transmission of some germs is greater than previously known. A list of references to peer-reviewed journal articles related to infection control can be found here.
With this new information, we asked ourselves, “Are we doing everything we can to protect the safety and well-being of people with CF at our own events?” Our answer was “no,” so we revised our policy with the sole purpose of limiting the health risks to people with CF at Foundation gatherings. Our sister organizations, Cystic Fibrosis Canada and the Cystic Fibrosis Trust in the United Kingdom, also recommend that only one person with CF be invited to indoor events.
Unfortunately, some individuals with CF are choosing to attend these events without notifying organizers. We strongly discourage this. Despite our new policy, we cannot guarantee that only one person with CF will be present at any given indoor Foundation event. We want all people with CF and their families to be aware of this possibility so that everyone can make informed decisions about attending our functions.
Please know that the updated guidelines on best practices for infection prevention and control in the clinic and hospital setting, as well as in everyday life, are expected to be published in the first half of 2014. We are preparing health education material to accompany these guidelines for people with CF, their families and caregivers.
We understand that this policy presents another difficult reality for those with CF, as it limits important opportunities to be with people who truly share your experience. All of us in the CF community lose out when we have fewer opportunities to meet with and learn from the people who are at the heart of our mission and inspire us every day.
The Foundation is committed to working closely with the entire CF community to find new and dynamic ways to come together and continue our shared work to end this disease. In early 2014, we will launch a new advisory council made up exclusively of people with CF to make sure we have regular opportunities to learn from and discuss important matters such as infection prevention with the community we serve. We are also actively exploring alternative technologies that will enable people with CF to participate virtually in Foundation events and meetings.
We will share more with you in the coming months on this important topic. In the meantime, if you have any concerns, ideas or questions, please write us at email@example.com. I look forward to hearing from you.
Robert J. Beall, Ph.D.
President and CEO
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