Just My Rambling Thoughts

1.19.2006

Ocean water a therapy for Cystic Fibrosis?

My son, Andrew, has Cystic Fibrosis and has been seeing a decrease in his lung function that his doctor's don't understand. He's a very active kid, either playing outside with his friends, playing Little League, or school sports (flag football and now lacrosse?!). His activity level, and lack of bretahing problems don't support the lung function test results he's getting. My wife and I think he's figured out how to make the "nice loop" for the PFT test and stopping, and his smirk a couple nights ago may confirm that. His doctor's are concerned it's something more serious and want to possibly put him on IV therapy that would require him having an IV port put in him - something we would like to avoid if not necessary.

This morning's check of CNN found the announcement of a therapy that may increase his lung function with just an inhaled therapy of sterile ocean water called hypertonic saline. The story of it's discovery is interesting, but the bottom line of the possibility of drug companies not making it for lack of a profit is disturbing to say the least.

1 Comments:

  • Sorry to hear that. I mean, things have come a VERY long way since I was a kid -- I had a school friend who had CF in the '60s and, well, part of the '70s -- but it's still a lot for a kid to go through. And even though the therapies are better now, the cost is obscene to say the least. Even with the super-duper bennies pack the guys at INCO had then (any prescription was 35 cents up front, not pay-and-reimburse), Vicky's drugs and devices (for percussion and so on) still cost a relative mint. And you know that for every researcher earnestly looking for a better treatment or a cure there are a hundred shareholders who want a dividend or a stock price increase. I don't know how they can ignore the fact that there are lives involved -- not just the kids, but the families and communities who have to pay for the treatment.

    Utter crap. They should all be ashamed of themselves.

    By Blogger Stan Rogers, at 1:42 AM  

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