CFFC and Infection Prevention

Cystic Fibrosis Family Connection (CFFC) seeks the delicate balance between the benefits of social interaction and the risks of cross contamination.

We feel that people living with CF are entitled to all the experiences life has to offer. We also recognize the special support that can only come from their peers – other individuals living with the same daily challenges.

Despite the advances made in the treatments for CF lung disease, people living with CF still face significant risks of colonization by organisms for which effective defenses have yet to be found. We have an obligation to educate our CF community about infection prevention, and protect them from unwarranted exposure to these organisms. However, we believe that the individuals living with CF are best suited to set their own infection prevention protocols (in consultation with their guardians and caregivers).

Considering these competing factors, we have adopted the following standards for CFFC-sponsored events which may be attended by individuals living with CF:

  • CFFC will not limit attendance by people living with CF; however, we ask people living with CF to identify themselves so that other attendees can evaluate their risk of engagement. CFFC will provide purple ribbons for this purpose.
  • CFFC expects people living with CF to make responsible decisions about attending an event; considering not only their own health but also being respectful of the health of other attendees. Special care must be taken by individuals who have cultured B cepacia , MRSA, epidemic strains of Pseudomonas or any bacteria which are resistant to antibiotics.
  • CFFC will inform attendees about the risks of infection and will provide infection control supplies (e.g., masks, sanitizer, etc.) at no charge and employ other reasonable infection control procedures at all events.
  • When possible, CFFC will hold events at open air venues.

NOTE: Other organizations take a different approach to infection prevention and control in the CF community. For example, the CF Foundation adopted an updated Infection Prevention and Control Policy in April, 2013 which applies to events sponsored by the Foundation, including the local CFF chapter and the Rochester CF Center. Be an informed participant – check with the event sponsor to learn about their infection management policy and practices.