Taking Away My Choice

Woke up today to an email from the CF Foundation about a new infection control policy that they are implementing, the policy statement in no way gives us evidence to support the new guidelines.  A snippet below (read full text thru link provided above).

"The key elements of the Foundation’s new policy are: 

• At any CF Foundation-sponsored indoor event or meeting, including gatherings like 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.

• At Foundation-sponsored outdoor events or gatherings, people with CF need to maintain a distance of at least 6 feet from each other. 

• Under no circumstances shall individuals who have ever had a confirmed positive sputum culture for Burkholderia cepacia (B. cepacia) complex attend any CF Foundation events, meetings or offices."

 Here is the thing. This impacts more than just what the CF Foundation does. The Foundation sets the standard for other organizations that serve CF patients including insurance companies. Therefore, the organizations that host or sponsor  stuff like a CF support group will most likely find themselves in the position of having to discontinue those face-to-face types of functions as their insurance will forbid such business practices. Unless they host it outdoors and maintain 6ft distance. Not gonna happen in my neck of the woods.

The other thing that really is getting under my skin is that CF is a progressive disease. Meaning, the infected's health declines overtime. Sure, the germs can sort of be dodged but then again not really. Study after study has come out about the fact that MRSA is ramped and not just in CF but in everyday normal healthy individuals. Pseudomonas in CF is more common than not having it, sort of par for the course thing.

On FB some have alluded that those who lost their battle with CF *might* still be around had these types of strict controls been in placed years ago. I challenge that notion, CF is what took their precious life and those who are alive today are so because of the wonderful advances in medication that the Foundation has largely been behind. CF is more promenent today than 30 years ago yet most of those patients died at very young ages and I highly doubt they socialized together as coordinated events were nearly none existent then.

1. Should we be cautious? YES 
2. Should there be some sort of infection control? YES (and there is)
3. Should we take measures to wash our hands after going to the grocery store, bathroom or attending an event with other CF'ers? YES
4. Should we as CF'ers or caregivers to CF'ers understand the risk of exposer? YES
5. Should we be compliant with all treatments? YES

In high areas of concentration, like the Bay Area, what's to say these patients aren't coming into contact already without knowing it? What about CF clinic days (many CF'ers come at the same time) what if they are exposed while waiting at the pharmacy to refill prescriptions but do so without knowing it? The what-ifs go on and on....

I simply feel that it should be my choice. The patients, as to how much exposure I'm willing to endure. No one else. Ever. 

Parents will of course make that personal decision for their children and they should, but, I highly recommend to carefully weigh those risks against the mental and social well-being of your child. The ability and will to fully-live is more powerful than any drug. I personally don't want to live to the ripe old age of any number if I can't fully live. I, like, many CF'ers had to find the will to carry-on without the support of others who understand my trials and tribulations. Its like walking thru hell and back. The path was riddled with deep depression, destructive behavior and no will to live. That lethel combination of isolation almost contributed to my death, not CF. Upon finally being able to connect with the CF community I've found support, friends and inspiration. I've meet others decades older than I, that's inspirational, that's gives me fuel to be complaint and carry-out when things get tough. 

This whole business is a slippery slope. I, for one am against it being mandated. Give us the option or choice. It is, I, that has to live with the consequences but until there is a bona-fide cure we all will find the same fate. 

~Doodlin'