I’m sitting here tonight and I am trying to ponder the idea of how our government makes money off sick children. It makes me absolutely heartbroken. I want to know what our government is doing to help cure our disease. I feel like such a conspiracy theorist when I think the way I am thinking tonight. I feel like they make so much money off of us being sick, so why would they cure CF? I hope with all my heart that that is not the reality of it, but I just want to know if anyone else out there feels like that? Nothing surprises me from our government anymore. It seems like we have all of these medications to subside the problems, I feel like it is time to find the cure…
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Breathe 4 Tomorrow 
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January 3, 2008 at 1:55 am
Traci
Sarah,
I’ve thought about this a lot & done a lot of research into the FDA & the DSHEA (naturopathic drug association) and the politics is beyond scary for sure. I’ve often felt myself headed down that conspiracy theorist road and then I HAVE TO – HAVE TO hold out hope for those movers and shakers and scientists out there with a conscience who continue to fight the good fight every day sitting in labs looking through microscopes all across the globe who PASSIONATELY want to find answers and YES CURES to diseases.
The most current thing that comes to mind is the gardisil vaccine which is the closest thing there is to a cure for cervical cancer. The vaccine cuts down on the majority of human papilloma virus strains which is well documented to be THE KEY component in cervical cancer. So as long as we continue to see these types of things coming out, there is hope.
I could go on – it’s an interesting topic with layer upon layer of politics my friends and the almighty dollar carries far TOO MUCH weight but there are good men & women in research all over the globe whose hearts, minds, blood, sweat & tears and years upon years have been put into finding cures and answers to disease processes and I have to continue to believe that good always prevails over evil.
Love ~ Traci
January 3, 2008 at 4:28 am
Zoe Lees
You know what I don’t get? Why on earth are they not offering carrier testing as a part of REGULAR prenatal testing? I was furious to find out that I was a carrier and that there were tests for this but it’s only offered AFTER you find out someone related to you has CF. I guess $$$ talks though and it seems more cost effective to let people suffer from the disease then prevent it.
January 3, 2008 at 9:45 am
Evan Burton
First off, I would like to thank you for all of your wonderful comments on our blog. It is that kind of encouragement that keeps us going strong!
And on this topic, I believe that the politics in medicine go way deeper than any of us could imagine. My own cf doctor at Kaiser even admitted that if there were a cure it would probably only be available out of the country, in Europe or France, and it will probably be discovered by an academic pursuit such as somebody trying to win the Nobel Prize or something and NOT from the CF foundation or medical related sciences. When people donate money to the CF foundation it does not go towards finding a cure, but finding new medications in order to treat us with. They would not make any money off of the cure but they make billions off of treating us for the rest of our lives. The last thing they want is for us to be healthy. A good example is the cancer industry. As soon as there were clinics within the U.S curing Cancer, the government shut them down and now they are in Mexico and other places out of the country still curing people from this “uncurable” disease.
My quality of life is so great that I rarely ever think about a cure. I think that through the use of diet, exercise, medication, and a positive outlook that great health is achievable for anybody with CF. It is my firm belief that we should embrace our disease and ask why it is that we have been given this and then look to the lessons associated with having it. What can we learn from it? Has it really affected your life in the negative way that you feel or have you just given it the power to become your Identity and control every aspect of your life? CF has played a small role in my life beyond the awareness and state of mind I have been forced to learn from it, which is priceless in itself. I would not want to trade lives with anybody because the lessons I have learned can take other’s a lifetime to achieve.
Don’t wait for a cure, start curing yourself now through the realization of your infinite potential! Start changing the world with what you have to offer and never back down or give up. Never dwell on the negative aspects of life and focus on the infinite beauty and mystery our world has to offer.
A window into your mortality can sometimes be the most beneficial thing that a human can have. It shows us that there never really is a tomorrow for anybody, sick or well. SO start your mission RIGHT NOW because that is all that anybody ever has.
Much love Breathe4tomorrow!
-www.livingindubiously.com
January 3, 2008 at 11:40 am
jennifer
I used to think that the goverment made us sick just to have us take meds that way they can make money and i know it sounds crazy but i do wonder sometimes why there is so much sickness and no cures.
January 3, 2008 at 6:54 pm
Zoe Lees
What you say is so true Evan. I remember during Raven’s long first year which she spent most of it in the hospital, a friend of mine had come to visit and she just burst into tears and said, “It’s like she’s living just to die.” And I said, “Aren’t we all?” It sounds morbid, but I really saw something click with her. Just how none of us know how long we have, or our loved ones have and how important it is to savor life. My son’s dad was the epitome of health and he passed away in a car accident at 26. You just never know and you can’t live your life obsessed with your death, or that’s just not living. Even though I hate all of the hell Raven has been through, her trials have created such a close relationship between us all and we are so blessed to be reminded what is really important in life.