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by Julie Desch and found on her blog "Sick and Happy". Six months ago, the National Cystic Fibrosis Foundation announced an update of their infection prevention and control policy. As stated on their website:
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.
As stated by the CEO of the CFF, Robert Beale, the intent of the change of policy was “… 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.”
At the risk of incurring the wrath of what most in the CF world regard as a beloved organization run by those with only the best intentions for all of us with CF, I would like to respectfully disagree with Dr. Beale, and the Infection Prevention and Control Committee charged by the CFF to come up with an updated and revised version of the 2003 Infection Control Recommendations for Patients with Cystic Fibrosis.
Don’t get me wrong. The CFF does an amazing job raising money and awareness in the fight to cure CF. The millions of dollars raised by over 75 chapters and branch offices of the CFF provide the ongoing gravitational force that has led to a tidal wave of new discoveries and lately, some promising new treatments for a disease that we all love to hate. There is no doubt that the fight to cure this ghastly disease would be nowhere near the finish line, as it appears to be rapidly approaching now, if it were not for the Cystic Fibrosis Foundation.
Indeed, the Foundation is lauded for birthing the concept of “Venture Philanthropy,” in which non-profit fundraising organizations provide funding for small pharmaceutical companies to develop new drugs for orphan diseases…companies that would otherwise be unable to do the necessary research. The idea is brilliant, and the proof of concept is none other than Vertex Pharmaceutical, maker of Kalydeco, AKA Blue Lightening, or as I like to call it, The Little Blue Pill That Was The Beginning To The End Of CF As We Know It (I need to work on an acronym). Bob Beale and his team deserve abundant credit for this.
But, you and I are a big part of the fund raising process. We fund raise. We educate others. We tell our stories. When we were younger and cuter, they were our pictures on the fund raising literature. After all, this is about us, right? Yet here is where the CFF has completely left us out of the equation. We are SO far out of the equation, in fact, that the concept that we might actually be able to decide for ourselves if we want to risk attending a CFF event has not even been considered–at least not that I can discern.
Instead, the CFF will be introducing at their next annual conference, a 92 item document, listing all of the ways adults and children with CF should be protected from cross infection. Note that the passive nature “be protected” as opposed to “protect themselves.” I mean what I say and I say what I mean. This document covers everything from telling us to avoid construction sites to containing our secretions. They include the directive to avoid all social contact with each other, to avoid car rides with each other, to not share utensils, to stand no closer than six feet from each other if we are outside, and to please not exercise together (they didn’t say please). The Foundation has no hesitancy telling us what to do.
Generally, I can take this all with a grain of salt and know that they are in fact, simply doing their job, and attempting to educate us about the risks that we face when we come in contact with another person with CF whose lung microbiome is different from ours. NEWS BREAK: Bugs might mix and match, and we could end up on the wrong side of that equation. I am well aware of that, and I don’t intend to hug you the next time I see you (I am assuming that you, dear reader, have CFTR “issues” as I do). But, perhaps there are a few of us out there who didn’t see Grey’s Anatomy, and don’t yet know that we are all co-pariahs and need to avoid each other like the plague. If so, I’m sure the new edition of the best-selling Infection Control Recommendations for Patients with Cystic Fibrosis will not be for naught.
But when they specifically mandate my behavior, I get pissed.
To read this rest of this blog, please click here. You'll want to read the rest of this!!!
Note from Ronnie: Full disclosure, I love Julie Desch.