The health and well-being of people with cystic fibrosis is the primary concern of the Cystic Fibrosis Foundation — it is at the heart of all we do.
To help reduce the risk of infection among people with CF, in March 2013 we updated our infection prevention and control policy for Foundation events, meetings and offices.
The cystic fibrosis community has long known that CF increases the risk of lung infections. Medical evidence shows that all people with CF could have bacteria, or germs, in their lungs and sinuses that might be spread to others with CF.
Despite the progress made in treating the symptoms of CF, lung infections caused by bacteria remain a serious problem for those with CF and can lead to severe or worsening disease or death.
To promote the health and safety of people with CF, the Foundation put in place infection prevention and control guidelines for all CF Foundation events, meetings and offices a decade ago. Our updated policy is based on the latest medical research on the risk of cross-infection among people with CF.
The key elements of the Foundation’s updated policy are:
- At indoor events: Only one person with CF may be present at any CF Foundation-sponsored indoor event, meeting or office, including gatherings such as Foundation chapter committee meetings. This person will be invited by the event/meeting organizers or volunteer leaders. The Foundation is working to find new ways to include others in these meetings, including videoconferencing.
- At outdoor events: People with CF need to maintain a distance of at least 6 feet from each other at any Foundation-sponsored outdoor event or gathering. Medical experts agree that this is the most effective distance for reducing the spread of germs.
- Burkholderia cepacia complex: No individual who has ever had a confirmed positive sputum culture for Burkholderia cepacia (B. cepacia) complex may attend any Foundation event, meeting or offices. There can be no exceptions to this policy.
The most significant change to our policy is new limitations on the participation of people with CF at Foundation-sponsored indoor gatherings, where the risk is greatest that dangerous bacteria might be spread from one person with CF to another.
We understand that these changes are concerning for many in our community, as they could add to the already significant burdens of the disease.
As an organization dedicated to improving the quality of life for people with CF, our decision to update our policy was not an easy one. However, our aim is to do whatever we can to promote the health of people with CF according to the best medical advice available to us.
Both Cystic Fibrosis Canada and the Cystic Fibrosis Trust in the United Kingdom had already put in place similar infection prevention and control policies to reduce the risk of cross-infection.
The changes to our policy followed an in-depth review of the latest data by a group of leading experts in CF care and infection prevention and control, people with CF and families.
Working together for nearly two years, they concluded that the Foundation’s current infection control policy did not go far enough to promote and protect the health and well-being of people with CF at Foundation gatherings.
The latest medical research shows that there is a greater risk of people with CF spreading destructive bacteria to others with CF than was previously believed.
These new findings included evidence that strains of different bacteria, such as Pseudomonas aeruginosa, methicillin-resistant Staphylococcus aureus (MRSA) and nontuberculous mycobacteria (NTM), had been spread between people with CF.
Recent research reviewed by the group also suggested that the spread of germs through the air was greater than was previously known. Also, people with CF can carry bacteria that might not be identified through routine sputum cultures.
In addition, studies have shown that some bacteria that are spread from person to person could lead to worse symptoms and could speed decline in lung function.
With this new information in hand, the group reviewing the data recommended we revise the Foundation’s policy to limit the risk of people with CF spreading or acquiring dangerous bacteria from one another at Foundation-sponsored gatherings.
While our revised policy has the unfortunate consequence of limiting the number of individuals at Foundation-sponsored events, we felt it was necessary to promote patient health.
People with CF and their families manage complicated treatment plans every day and are knowledgeable about their disease and how best to reduce the risk of infection.
Our aim with this updated policy is to make sure that we do all we can to responsibly promote the best health practices and help people with CF limit the risk of cross-infection.
We are committed to working closely with people with CF and their families to lessen the challenges of coming together and find new ways to share our thoughts and address the needs and concerns of people living with CF.
Our policy also emphasizes the importance of universal best practices for infection prevention and control. Although germs are everywhere and cannot be avoided, you can reduce the risk of getting or spreading germs by cleaning your hands — either with soap and water or using an alcohol-based hand gel.
You also should cough or sneeze into a tissue, then throw it away and be sure to clean your hands. In addition, anyone with a cold or other illness that can spread germs should avoid unnecessary contact with people with CF until the infection has gone away.
As we learn more, we will review our policy and update it based on recommendations from experts in infection prevention and with input from people with CF and their families.
- To learn more about the full CF Foundation Infection Prevention and Control Policy, please click here.
- Read FAQs about the Foundation’s Infection Prevention and Control Policy.
- Watch a webcast about the Foundation’s Infection Prevention and Control Policy.
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