Frequently Asked Questions About the CF Foundation’s Infection Prevention and Control Policy 

In 2013, the CF Foundation revised its infection prevention and control policy for all Foundation events, meetings and offices to reduce the risk of cross-infection among people with CF.

Despite significant progress in treating cystic fibrosis, lung infections caused by bacteria remain a serious problem for those with CF and can lead to severe or worsening disease, or death. 

We revised our policy with the sole purpose of limiting the health risks to people with CF. 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.

The Foundation’s infection prevention and control policy applies to Foundation-sponsored gatherings. 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.

The CF Foundation also is working with researchers to learn more about how widespread cross-infection is between people with CF and identify new ways to prevent and treat lung infections in those with the disease.

If you have questions about this policy or would like more information on participating in Foundation events, please contact your CF Foundation chapter or write to infectioncontrol@cff.org.



What is the CF Foundation’s infection prevention and control policy for Foundation events?

The key elements of the Foundation’s policy are:

  • 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. 

  • Outdoor events: People with CF should maintain a distance of at least 6 feet from each other at any Foundation-sponsored outdoor event or gathering.

People with CF and their families should be aware that individuals with CF might choose to attend Foundation events or meetings without notifying event organizers. We strongly discourage this; however, we cannot guarantee that only one person with CF will be present at any indoor Foundation event.

For more information, please read the Foundation’s full infection prevention and control policy.

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Why did the Foundation change its infection prevention and control policy?

The CF Foundation has had an infection prevention and control policy in place since 2003 for all Foundation-sponsored gatherings. We revised our policy in 2013, following an in-depth review of the latest medical evidence by a Foundation-sponsored committee of experts in CF care and infection prevention and representatives of the CF community.

The committee concluded that there is a greater risk of people with CF spreading or acquiring dangerous bacteria from others with CF than was previously understood.

Research shows that certain bacteria can lead to worse symptoms and can speed decline in lung function. These bacteria include drug-resistant Pseudomonas aeruginosa, methicillin-resistant Staphylococcus aureus (MRSA), Burkholderia cepacia complex and nontuberculous mycobacteria (NTM), among others.

The latest medical evidence also suggests that the risk of airborne transmission of some germs is greater than was previously known. Based on these findings, we recommend that only one person be in attendance at indoor Foundation gatherings to reduce the risk of cross-infection.

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.

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For people with CF, why are indoor events different from outdoor events?

Bacteria, or germs, can be spread in three ways:

  • Direct contact, such as shaking hands or kissing 
  • Indirect contact, from touching common objects, such as doorknobs 
  • Infectious droplets that hang in the air after someone coughs or laughs

Medical evidence shows that people with CF can spread destructive bacteria to one another. This is known as cross-infection.

At indoor events or meetings, there is a greater risk of cross-infection because people are closer together. This makes it more likely for people to encounter infectious droplets after someone coughs and when they touch common objects, like doorknobs and pens, that have been touched by others. For this reason, the CF Foundation recommends that only one person with CF be present at any indoor Foundation gathering.

At outdoor events, there is still a risk of spreading bacteria to others with CF, but there is typically more space, and it is easier to move away from others. However, people with CF should not travel in the same vehicle or gather in common areas at these events, for example, in a tent or at an indoor happy hour that follows an outdoor event.

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What if more than one person with CF comes to an indoor Foundation event?

People with CF and their families should be aware that individuals with CF might choose to attend Foundation events or meetings without notifying event organizers. We strongly discourage this; however, we cannot guarantee that only one person with CF will be present at any indoor Foundation event.

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How does the Foundation decide which individual with CF can come to an indoor event?

Every event is different. The specific type of event might determine which person with CF the Foundation will invite. For example, when making this decision, the Foundation would consider whether a person with CF will be a speaker at the event or receive an award.

The individual invited guest for each indoor event is recommended by the chapter's event chair and/or volunteer leaders in consultation with the executive director.

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If I did not have any CF-specific bacteria in my most recent sputum culture, can I attend an indoor event if another person with CF will be there?

Sputum cultures may not show all the germs that can be spread among those with the disease. Medical evidence shows that all people with CF could have bacteria that might spread to others with CF. For this reason, only one person with CF may be present at a CF Foundation-sponsored indoor event, meeting or office.

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If I have CF and attend a Foundation event, will I be asked to identify myself by wearing a pin?

  • At indoor events and meetings: No, you will not be asked to wear a pin or other designated identification because only one person with CF can be present.

  • At outdoor events: Yes, people with CF will be asked to voluntarily identify themselves by visibly wearing the CF Foundation logo pin or other designated identification for the event.

The logo pin or other identification helps people with CF keep at least 6 feet apart from others with CF to reduce the risk of cross-infection.

Contact your chapter if you have any questions about identification for any event.

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Does the Foundation’s policy apply to a person with CF who has had a lung transplant?

Yes, the Foundation’s infection prevention and control policy also applies to a person with CF who has had a lung transplant. This is because the upper respiratory system (sinuses) may still have CF-specific germs that might be spread to others with CF.

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Can siblings who have CF and are living in the same household attend an indoor event together?

Yes, people with CF who currently live in the same household, such as brothers and sisters, can attend indoor Foundation events and meetings together. If the family members do not live in the same household, they should not attend the same indoor event or meeting.

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Can someone who does not have CF spread harmful germs like Pseudomonas or B. cepacia to a person who does have CF?

There is no risk of a person who does not have CF spreading dangerous bacteria, like Pseudomonas or B. cepacia, to someone who does have CF. However, viruses like the common cold or influenza can be easily spread between everyone. These respiratory germs can be more harmful to a person with CF than they are to people who do not have CF. For that reason, it is critical that everyone use basic infection control best practices, such as cleaning your hands, covering your cough and getting the influenza vaccine.

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How can people with CF continue to participate in CF Foundation indoor events and meetings?

We understand that our updated infection prevention and control policy presents another difficult reality for those with CF, as it limits important opportunities to be with people who truly share your experience. We are committed to working closely with the entire CF community to find new and dynamic ways for people with CF to participate in indoor Foundation events.

We are expanding our use of teleconferencing and live videocasts, and are actively exploring alternative technologies that will enable people with CF to participate virtually in Foundation events and meetings.

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Additional Resources

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Updated 1/29/14