Thursday, March 14, 2013

New CFF Regulations

I received an email today from the Cystic Fibrosis Foundation informing me on the new infection control regulations between CFers. (My thoughts about it are below)

CF Foundation Updates Infection Prevention and Control Policy for All Foundation Events and Meetings
March 14, 2013
The Cystic Fibrosis Foundation recently updated its Infection Prevention and Control Policy for all Foundation events, meetings and offices to protect the health of people with cystic fibrosis.
The Foundation took this step based on increasing medical evidence of a greater risk that people with CF could spread destructive germs to others with CF, which may lead to severe or worsening lung disease. The new policy reflects the advice of leading CF medical experts and published medical research.
The key elements of the Foundation’s policy are:
  • Indoor events: At any Foundation-sponsored indoor event or meeting, including gatherings such as chapter committee meetings, only one person with CF may be present and he or she will be designated in close consultation with event chairs and key event volunteers.
  • Outdoor events: At Foundation-sponsored outdoor events or gatherings, people with CF need to maintain a distance of at least 6 feet from each other.
  • B. cepacia: Under no circumstances shall individuals who have ever had a confirmed positive sputum culture for Burkholderia cepacia (B. cepacia)complex attend any Foundation events, meetings or offices.
“We understand that these changes may be difficult for many in our community,” said Robert J. Beall, Ph.D., president and CEO of the Foundation. “However, we want to be sure that we are doing all we can to reduce the risk of cross-infection among people with the disease. The health and well-being of people with CF is our top concern — it is at the heart of all we do.”
The Foundation is expanding its use of teleconferencing and live videocasts to help make it possible for people with CF to participate in indoor Foundation events and meetings and is exploring other new technologies to engage people with CF in all of its activities.


I'm not quite sure how I feel about this. On one hand, I understand. It's to keep us healthy and from spreading our germs/bacteria to other CFers...but at what point to we have to put ourselves in a bubble? What about when I go to my CF clinic appointments, how are they going to seclude us in the waiting room? And I've even seen that at some Great Strides events (even though they're outdoors) CFers have had to wear a lei to identify themselves as having CF. Are all CF fundraising events going to be like this now? What about the black tie events and indoor things throughout the year where several CF patients were able to speak and tell about their experiences? It's tricky when we're trying to live as normal as possible, but yet we can't because we can't be around each other and everywhere we go we have to identify as a CFer. I'm not just a CF patient. I'm a daughter, sister, wife, aunt, teacher, and friend, too.

All I have to say is thank goodness  for social media! I'm very thankful to have things like Facebook, CysticLife,, blogs, etc to connect with other CFers. When you're going through something, and you feel like no one else understands, what do you want to do? You want to talk to someone who's going through the same thing as you; you don't want to feel like you're completely alone in all of this and that's what Facebook, CysticLife, CFLiving, blogging, and forums have been able to do for me and many, many other cysters, fibros and parents of CFers. Although this is discouraging, we can't let it define us! We have to keep our relationships strong exactly how we've been doing it. It's so important now to spread the word about these amazing websites and forums for CFers to connect. 

Anyone want to buy me a webcam so I can keep in touch (and see) my cysters & fibros since I'm not allowed to see them unless we're yelling, outdoors, six feet away?! ;-)


  1. There seems to be a lot of people really upset about this new policy. Like you, I am not sure how I feel about it. I understand it. How horrible would it be to contract b cepacia because you went to a CF event. How awful would it be to give your friend (or any fellow CFer) a bug of yours because you were too close. Maybe CFF is being over protective, but I see where they are coming from.

    As far as identifying yourself as a CF at events- at our CF walk all CFers wear purple beads. I actually like it because I keep my distance from other purple beads and i don't have to worry if someone whith out purple beads is getting in my personal space. I also like knowing who has CF because I never see CFers in real life.

    Like you said, thank goodness for social media.

  2. After the initial shock and I've had a night to ponder this, I still feel the same. We as CF'ers should have the option, if your worried about cross-infection then don't attend, if you understand the risks and still want to attend then it should be your choice. I understand the need for some infection control, which they already had in place but the that only 1 CF patient at indoor events is ridiculous. What many also don't understand is just how influential the foundation is, this new guideline will most likely begin to be implemented among other organizations that serve CF patients. For example, our CF support group maybe canceled because Kaiser's liability insurance is reviewing the new recommendation from the foundation. This saddens me. I think the foundation does a wonderful job at raising money, awareness, etc but this is so extreme with little medical data to prove this help decrease the infection rate.