Monday, September 04, 2006

Shedding Light on Cepacia

Cast you off into exile!

--Beastie Boys

A recent discussion thread in the forums has made me aware of how many misperceptions are out there about cepacia. In the CF community, this exceptionally resistent bacteria is a bone of contention for patients and healthcare professionals alike. Strict adherence to cross-infection avoidance protocols must be a priority. The gravity of the potential probelms for CF patients cannot be denied. However, many patients and their caregivers seem to have almost an irrational fear of being exposed to cepacia.

Because of the different genomovars (i.e. species) of cepacia, it is impossible to predict how an individual's lung function and overall health will be affected once cepacia has been cultured. For some people, decline is rapid and devastating. Others (like myself) may experience some degree of loss of lung function and become more susceptible to other infections.

Most of the anxiety about cepacia stems from the basic reality that cepacia is highly transmissible from patient to patient(1). However, not every species has the same transmissiblity characteristics.

The CFF patient registry tracks approximately 23,000 patients with cystic fibrosis who receive care at CF Centers throughout the country. Overall, only 3-5% of CF patients culture cepacia in any form. This translates to anywhere from 690 to 1150 patients who culture cepacia. In the United States there are 115 care centers. Just from rouhg estimation, this could mean that only 10 patients at each care center have cepacia. Keep in mind that not all of them are present each time the clinic holds appointments, and not all of them continually culture cepacia.

I am not intending to downplay the seriousness of cepacia, nor am I expressing the idea that precautions should be ignored. There are epidemic strains of cepacia. According to an academic paper published in November, 2003 on the study of cepacia in the UK (2)

"Minimising the risk of transmission of this organism from one individual to another requires a multifactorial approach. The polymerase chain reaction [PCR] has allowed for earlier detection of this organism in the clinical progression of the infection, which may allow for earlier and more aggressive intervention with appropriate antibiotics. In addition, such molecular diagnostic approaches may help by giving direction to segregation policies, thus minimising transmission in both the in-patient and the out-patient setting. Most importantly perhaps is vigilance on the part of the CF patient to adhere to infection control practices. Although tedious and socially difficult to maintain properly, these practices do work. " (Emphasis mine)

The more common pathogens of concern in CF clinics are those such as Pseudomonas aerginosa, and various staph infections. I am confident in my doctors' ability to execute proper infection control measures that protect me and others with CF. It's the rest of the world I worry about--I find myself far more likely to catch a nasty bug from the world beyond my health care center's walls. Public places like movie theatres, swimming pools, shopping malls, etc. pose a greater risk to my overall health.

(1) source: Prevention of Cross Infection in cystic fibrosis. Claus Moser, MD, PhD & Neils Hoiby, MD
(2) source: Burkholderia cepacia and cystic fibrosis. John E. Moor & J. Stuart Elborn. November, 2003. Northern Ireland Public Health Library.

I would not be overly confident of the CF team's ability to do infection control. A lot of new evidence is still emerging about how infections can be transmitted and not all teams are taking the danger as seriously as they should be. A hospital close to me had a cepacia outbreak and it woke everyone up to how quickly it can spread.
I'm not overly confident, but confident nonetheless. Yes, it can and does spread quickly, but that's not necessarily due to ineffective protocols. There have been instances where a shipment of cepacia- contaminated mouthwash were to blame for an outbreak in a hospital.
I was so angry as a teen when they discontinued CF camp. The funny thing is all my friends, who I had camped with for many years in the same tent, and swam with in the same pool, and eaten, and did everything with during camp, all of them had Cepacia, but I don't. I never stopped seeing them. I always took necessary steps to avoid infection, but I didn't want it to affect my friendships. They are all gone now. It sucks, but I believe that eduction is better than isolation. Luckily now the internet makes collaboration easy without infection concerns. But I believe that seeing the older CF guys when I was a kid really helped me. Kids need to have something to look up to... blah blah blah, I could go on forever about this but you get the idea.
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