Thursday, March 14, 2013

Pushing us into Bubbles

The Cystic Fibrosis Foundation has now come out with new infection control regulations. There have been regulations in place for quite some time now, but they are getting more strict more frequently. Many people have seen the episode of Grey's Anatomy where there was a couple who both had CF. The man was needing a lung transplant, but his doctor said she wouldn't do it unless he and his girlfriend broke up and stayed away from each other because of the fear of getting each other sick. While a doctor would never do that, those of us with CF have been told to stay away from each other. There is a greater possibility of us catching some horrible bacteria from each other that can make us sick. With that being said, I believe there is a line between being safe and telling us to live in a bubble. Here is the email I received today from the foundation laying out the new rules and regulations.
We are writing to let you know that the Cystic Fibrosis Foundation recently implemented a new infection prevention and control policy for all Foundation events, meetings and offices to protect the health of people with CF. We took this step based on increasing medical evidence that the risk of people with CF spreading destructive germs to one another is greater than was previously thought. Our new policy reflects the advice of leading medical experts on this subject.

The health and well-being of people with CF is our topmost concern — it is at the heart of all we do. We have long had infection control guidelines in place to promote the safety of people with CF. With this new policy, we are acting proactively and immediately to reduce the risk of cross-infection among people with CF. 

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.  

Now let me begin by saying that I do understand why they are doing this, but I believe they have taken it a step too far. The regulation that I have a big issue with is the first one on the list. Just this month, I got the opportunity to speak at Martinis and Movies with another young woman who has CF. Now, that is not possible. We raised $14,000 by speaking at that event. Now we can't join forces to try to raise money. If I ever speak at an event inside like I eventually would love to start doing, no person with CF will be there to hear me. Likewise, if someone else with CF is speaking, I won't be able to go hear what they have to say.

My parents did not raise me to live in a bubble. They encouraged me to follow my dreams and to live my life the way I wanted. Never was I told I could not do something because of cystic fibrosis. That is why I have such a hard time accepting this. There is a way to keep us safe without secluding us even further. CF is already a lonely disease.  I don't want to live in a bubble. I want to be able to participate in all of events.... that should be part of my rights as a CF patient.

I guess I just have to accept it and deal with it, because I doubt the foundation will be changing its mind. It's just sad and disheartening that we get pushed further and further away from the only people who can really understand the difficulties that we go through every day with this disease. At least we have social media... without that, I would never be able to get to know anyone else dealing with the things I deal with.

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