My takeaway from the NACFC

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Mommafirst

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>rmotion</b></i>

Thanks for the update!<p>

Q In regards to the smoking. Is this the nicotine issue we were talking about. A reduction in CFTR is
not good or do you mean something else. Or are they saying CF's should not smoke?<p>

<p>


<p></end quote>

<br>In regards to the smoking, they are finding that long term smokers seem to have a similar diminishing function of the CFTR protein to that of CF patients. So basically, by smoking they are giving themselves a disease similar to CF.
 
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Mommafirst

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>bigstar</b></i>

Please we need more references of what happened in NACFC . Links could be very helpful! Im very excited to know that new pharmaceutical companies are getting in the game! If you have any info about their new drugs please post!



PS I am requesting again from the moderators a new section where we we will be able to discuss about researc and new drugs. Thank you!</end quote></div>

<div><br></div><div>I took a lot of notes and have some links, etc.    I got back yesterday and had a busy day working today.  I'm off tomorrow for election day, so I will try to sift through my notes and post what I learned.   </div>
 
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Mommafirst

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>bigstar</b></i>

Please we need more references of what happened in NACFC . Links could be very helpful! Im very excited to know that new pharmaceutical companies are getting in the game! If you have any info about their new drugs please post!



PS I am requesting again from the moderators a new section where we we will be able to discuss about researc and new drugs. Thank you!</end quote>

<br>I took a lot of notes and have some links, etc. I got back yesterday and had a busy day working today. I'm off tomorrow for election day, so I will try to sift through my notes and post what I learned.
 
M

Mommafirst

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>bigstar</b></i>

Please we need more references of what happened in NACFC . Links could be very helpful! Im very excited to know that new pharmaceutical companies are getting in the game! If you have any info about their new drugs please post!



PS I am requesting again from the moderators a new section where we we will be able to discuss about researc and new drugs. Thank you!</end quote>

<br>I took a lot of notes and have some links, etc. I got back yesterday and had a busy day working today. I'm off tomorrow for election day, so I will try to sift through my notes and post what I learned.
 
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Incomudrox

New member
Thanks to the CF Foundation and Factions/Lobbying/Special interest groups there will NEVER be a cure for CF. We are being brought into the world of "managed conditions" congrats people! Applaud the CF Foundation for enslaving us to the huge pharm companies for the rest of our lives. I wonder who in the CF Foundation is lining their pockets slowly but surely.
 
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Incomudrox

New member
Thanks to the CF Foundation and Factions/Lobbying/Special interest groups there will NEVER be a cure for CF. We are being brought into the world of "managed conditions" congrats people! Applaud the CF Foundation for enslaving us to the huge pharm companies for the rest of our lives. I wonder who in the CF Foundation is lining their pockets slowly but surely.
 
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Incomudrox

New member
Thanks to the CF Foundation and Factions/Lobbying/Special interest groups there will NEVER be a cure for CF. We are being brought into the world of "managed conditions" congrats people! Applaud the CF Foundation for enslaving us to the huge pharm companies for the rest of our lives. I wonder who in the CF Foundation is lining their pockets slowly but surely.
 
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anien2

New member
I rather being enslaved to a huge pharm companie for the next 50 years than being dead in half that time. Let the companies find something good enough to keep CFers alive with a good quality of life, if they get rich selling health to CFers thats OK with me.
 
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anien2

New member
I rather being enslaved to a huge pharm companie for the next 50 years than being dead in half that time. Let the companies find something good enough to keep CFers alive with a good quality of life, if they get rich selling health to CFers thats OK with me.
 
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anien2

New member
I rather being enslaved to a huge pharm companie for the next 50 years than being dead in half that time. Let the companies find something good enough to keep CFers alive with a good quality of life, if they get rich selling health to CFers thats OK with me.
 
I

Incomudrox

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anien2</b></i>

I rather being enslaved to a huge pharm companie for the next 50 years than being dead in half that time. Let the companies find something good enough to keep CFers alive with a good quality of life, if they get rich selling health to CFers thats OK with me.</end quote></div><br><br>While I do agree this is MUCH BETTER than the alternative option, this attitude of "if they get rich selling health to CFers thats OK with me." is the reason why we still have cancer, TREATMENTS, no cure for diabetes and many other countless illnesses. It's amazing even if the truth would come out of the bag, they simply couldn't cure them. It would cause a ripple through the world economy far worse than what we are experiencing now, its so insane that these monopoly have grown so large. The best part is your response is exactly what they have manipulated people into saying, "well they are so big ill never do anything i'm just one person". The the fact of the matter is they can cure it but now won't because you are okay with it. Essentially you are now PAYING TO HAVE CYSTIC FIBROSIS! Think about that!<br>
 
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Incomudrox

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anien2</b></i>

I rather being enslaved to a huge pharm companie for the next 50 years than being dead in half that time. Let the companies find something good enough to keep CFers alive with a good quality of life, if they get rich selling health to CFers thats OK with me.</end quote><br><br>While I do agree this is MUCH BETTER than the alternative option, this attitude of "if they get rich selling health to CFers thats OK with me." is the reason why we still have cancer, TREATMENTS, no cure for diabetes and many other countless illnesses. It's amazing even if the truth would come out of the bag, they simply couldn't cure them. It would cause a ripple through the world economy far worse than what we are experiencing now, its so insane that these monopoly have grown so large. The best part is your response is exactly what they have manipulated people into saying, "well they are so big ill never do anything i'm just one person". The the fact of the matter is they can cure it but now won't because you are okay with it. Essentially you are now PAYING TO HAVE CYSTIC FIBROSIS! Think about that!<br>
 
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Incomudrox

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anien2</b></i>

I rather being enslaved to a huge pharm companie for the next 50 years than being dead in half that time. Let the companies find something good enough to keep CFers alive with a good quality of life, if they get rich selling health to CFers thats OK with me.</end quote><br><br>While I do agree this is MUCH BETTER than the alternative option, this attitude of "if they get rich selling health to CFers thats OK with me." is the reason why we still have cancer, TREATMENTS, no cure for diabetes and many other countless illnesses. It's amazing even if the truth would come out of the bag, they simply couldn't cure them. It would cause a ripple through the world economy far worse than what we are experiencing now, its so insane that these monopoly have grown so large. The best part is your response is exactly what they have manipulated people into saying, "well they are so big ill never do anything i'm just one person". The the fact of the matter is they can cure it but now won't because you are okay with it. Essentially you are now PAYING TO HAVE CYSTIC FIBROSIS! Think about that!<br>
 
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musclemania70

New member
Esentially we don't have any drugs we are taking currently without the greed that comes with creating a new product and selling it to those who need it. Its capitalism and free markets. In this case the ill are the ones creating the need.

If everyone stood up and said 'i am not taking another drug or participating in another trial until a real cure is found' do you know how many people would participate? None. Because we'd all be dead in a matter of months or days.

So what are we gonna do? Are you going to risk your life? What do you suggest we DO NOW? I'd like to hear your ideas.
 
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musclemania70

New member
Esentially we don't have any drugs we are taking currently without the greed that comes with creating a new product and selling it to those who need it. Its capitalism and free markets. In this case the ill are the ones creating the need.

If everyone stood up and said 'i am not taking another drug or participating in another trial until a real cure is found' do you know how many people would participate? None. Because we'd all be dead in a matter of months or days.

So what are we gonna do? Are you going to risk your life? What do you suggest we DO NOW? I'd like to hear your ideas.
 
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musclemania70

New member
Esentially we don't have any drugs we are taking currently without the greed that comes with creating a new product and selling it to those who need it. Its capitalism and free markets. In this case the ill are the ones creating the need.
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<br />If everyone stood up and said 'i am not taking another drug or participating in another trial until a real cure is found' do you know how many people would participate? None. Because we'd all be dead in a matter of months or days.
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<br />So what are we gonna do? Are you going to risk your life? What do you suggest we DO NOW? I'd like to hear your ideas.
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Incomudrox

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>musclemania70</b></i>

Esentially we don't have any drugs we are taking currently without the greed that comes with creating a new product and selling it to those who need it. Its capitalism and free markets. In this case the ill are the ones creating the need.



If everyone stood up and said 'i am not taking another drug or participating in another trial until a real cure is found' do you know how many people would participate? None. Because we'd all be dead in a matter of months or days.



So what are we gonna do? Are you going to risk your life? What do you suggest we DO NOW? I'd like to hear your ideas.</end quote></div><br><br>No one will do anything because it won't do any good. The problem is rooted far deeper than anyone can comprehend in their mind. If someone wants me to draw it out in Visio I will. The point of the matter is there are too many people who are buddy buddy with lawmakers and corporate entities in the pharm industry. They gave up this battle along time ago and when they did that it was lost forever. So to answer your questions what am I going to do? The answer is nothing besides take what is given to us and run with it. What do I suggest you all do? Whatever you want. The point is that this has progressed past the level of a person who group of persons stopping it. However one day, (unknown) it will cave in on itself, and that will be the time when the truth comes out. When the joke becomes so large that it, itself is subject to its implications. Like all large great nations, who became so great through corruption, and greed, and then seemly overnight vanish. It's happened to all great nations and eventually will happen to the united states.<br>
 
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Incomudrox

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>musclemania70</b></i>

Esentially we don't have any drugs we are taking currently without the greed that comes with creating a new product and selling it to those who need it. Its capitalism and free markets. In this case the ill are the ones creating the need.



If everyone stood up and said 'i am not taking another drug or participating in another trial until a real cure is found' do you know how many people would participate? None. Because we'd all be dead in a matter of months or days.



So what are we gonna do? Are you going to risk your life? What do you suggest we DO NOW? I'd like to hear your ideas.</end quote><br><br>No one will do anything because it won't do any good. The problem is rooted far deeper than anyone can comprehend in their mind. If someone wants me to draw it out in Visio I will. The point of the matter is there are too many people who are buddy buddy with lawmakers and corporate entities in the pharm industry. They gave up this battle along time ago and when they did that it was lost forever. So to answer your questions what am I going to do? The answer is nothing besides take what is given to us and run with it. What do I suggest you all do? Whatever you want. The point is that this has progressed past the level of a person who group of persons stopping it. However one day, (unknown) it will cave in on itself, and that will be the time when the truth comes out. When the joke becomes so large that it, itself is subject to its implications. Like all large great nations, who became so great through corruption, and greed, and then seemly overnight vanish. It's happened to all great nations and eventually will happen to the united states.<br>
 
I

Incomudrox

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>musclemania70</b></i>

Esentially we don't have any drugs we are taking currently without the greed that comes with creating a new product and selling it to those who need it. Its capitalism and free markets. In this case the ill are the ones creating the need.



If everyone stood up and said 'i am not taking another drug or participating in another trial until a real cure is found' do you know how many people would participate? None. Because we'd all be dead in a matter of months or days.



So what are we gonna do? Are you going to risk your life? What do you suggest we DO NOW? I'd like to hear your ideas.</end quote><br><br>No one will do anything because it won't do any good. The problem is rooted far deeper than anyone can comprehend in their mind. If someone wants me to draw it out in Visio I will. The point of the matter is there are too many people who are buddy buddy with lawmakers and corporate entities in the pharm industry. They gave up this battle along time ago and when they did that it was lost forever. So to answer your questions what am I going to do? The answer is nothing besides take what is given to us and run with it. What do I suggest you all do? Whatever you want. The point is that this has progressed past the level of a person who group of persons stopping it. However one day, (unknown) it will cave in on itself, and that will be the time when the truth comes out. When the joke becomes so large that it, itself is subject to its implications. Like all large great nations, who became so great through corruption, and greed, and then seemly overnight vanish. It's happened to all great nations and eventually will happen to the united states.<br>
 
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LouLou

New member
This post is an excellent example of why the idea of creating a stickie at the top of the section on a subject wouldn't work. Threads become discussions which is great and what should happen. Many threads on a seamingly "same subject" all have a different spin depending how the "discussion" goes. So...anyway back this post.

I appreciate Edan taking the time to share her notes with us from NACFC. She's really "given back" to us since many of us can not attend. As for the request for references. When an expert in a field presents at a conference they don't usually post a reference because it is data that they have directly been involved with so they don't have to credit anyone. If you feel so inclined you could probably do a search on google with some of these topics and find some interesting stuff that all of us would like to see :)

My thoughts on the pharma industry is that many of the scientists who are working each day to find something that works against the ailment they are targeting would like to find it...whether just to relieve symptoms or actually cure it. I am the wife of an organic chemist in lead optimization for drug development. The "low hanging fruit" have all been discovered and mroe than 99% of the time is failure in the lab. We need to continue to support scientific efforts here in America. Its backwards that the marketing guys get free cars and top salaries while the true experts in drug dev don't get very much. The FDA needs to revamp the pharm ind if we are to continue to stay a leader in the world. As it is, most drug dev is headed overseas with most all drugs going generic and no blockbusters in the pipeline. The industry has been "propped up" by the bounty that low hanging fruit has provided for multiple generations. Now there is no low hanging fruit yet coasters are still able to stay employed. We need to truly recognize super stars in drug dev which is not currently done. When a drug is patented the scientist responsible for making it gets paid $1 as mandated by the FDA. In germany, they get royalties. While I love that America takes care of all of it's people...or at least it used to....people that are truely stars should be rewarded and they are not. For this reason, my family may be recruited by another nation and it will be America's loss.
 
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