Girl with CF on The View

[Landy]

I thought it was wonderful of Rosie to grant this wish to Stephanie and at the same time bring awareness to CF. I had to have the kleenex handy too.
I don't get to shook up either way over the "cure in her lifetime" comment, or whatever it was that she said. I've heard this so many times & know what will be will be. Obviously, none of us knows when/if there will be a cure so we should take these comments with a grain of salt.
I can see where people don't want the public misinformed, but possibly a cure will happen in this little girl's lifetime...who knows?
Melissa, I also noticed that she didn't mention her nephew in a past-tense reference. Like someone else mentioned, she probably wanted to keep this light-hearted.
Good for Rosie....something this little girl will never forget<img src="i/expressions/rose.gif" border="0">

 

[Landy]

I thought it was wonderful of Rosie to grant this wish to Stephanie and at the same time bring awareness to CF. I had to have the kleenex handy too.
I don't get to shook up either way over the "cure in her lifetime" comment, or whatever it was that she said. I've heard this so many times & know what will be will be. Obviously, none of us knows when/if there will be a cure so we should take these comments with a grain of salt.
I can see where people don't want the public misinformed, but possibly a cure will happen in this little girl's lifetime...who knows?
Melissa, I also noticed that she didn't mention her nephew in a past-tense reference. Like someone else mentioned, she probably wanted to keep this light-hearted.
Good for Rosie....something this little girl will never forget<img src="i/expressions/rose.gif" border="0">

 

[Landy]

I thought it was wonderful of Rosie to grant this wish to Stephanie and at the same time bring awareness to CF. I had to have the kleenex handy too.
I don't get to shook up either way over the "cure in her lifetime" comment, or whatever it was that she said. I've heard this so many times & know what will be will be. Obviously, none of us knows when/if there will be a cure so we should take these comments with a grain of salt.
I can see where people don't want the public misinformed, but possibly a cure will happen in this little girl's lifetime...who knows?
Melissa, I also noticed that she didn't mention her nephew in a past-tense reference. Like someone else mentioned, she probably wanted to keep this light-hearted.
Good for Rosie....something this little girl will never forget<img src="i/expressions/rose.gif" border="0">

 

[2perfectboys]

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

I'm not quite sure what to think of Rosie's comment that there will be a cure in our lifetime. I know they say they are working for it, but....who wants to find a cure when there is so much money to be made when we all still have it. I

Caren 34 w/CF</end quote></div>

Not finding a cure to keep making money off of CF is an crazy comment. CF care is not a big money maker in the first place. Drug companies are not going to lose out if there is a cure found for CF, because most of the drug companies have nothing to do with CF meds. It's hard to get drug companies to invest in CF research and care because there is not that large of population to sell their services to. If anything, a cure could bring some company lots of money. I think if u asked most physicians what they thought about a cure for CF putting them out of business they would embrace this notion. I do think a cure is possible in most people's lifetime, 20-30 years. I don't think it will happen, but who's to say what the technology will bring in 10years. It's too draining to be so negative that there is no chance for a cure. If it's not going to be a cure, I at least hang my hopes that CF will be treatable like many other diseases are today.

 

[2perfectboys]

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

I'm not quite sure what to think of Rosie's comment that there will be a cure in our lifetime. I know they say they are working for it, but....who wants to find a cure when there is so much money to be made when we all still have it. I

Caren 34 w/CF</end quote></div>

Not finding a cure to keep making money off of CF is an crazy comment. CF care is not a big money maker in the first place. Drug companies are not going to lose out if there is a cure found for CF, because most of the drug companies have nothing to do with CF meds. It's hard to get drug companies to invest in CF research and care because there is not that large of population to sell their services to. If anything, a cure could bring some company lots of money. I think if u asked most physicians what they thought about a cure for CF putting them out of business they would embrace this notion. I do think a cure is possible in most people's lifetime, 20-30 years. I don't think it will happen, but who's to say what the technology will bring in 10years. It's too draining to be so negative that there is no chance for a cure. If it's not going to be a cure, I at least hang my hopes that CF will be treatable like many other diseases are today.

 

[2perfectboys]

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

I'm not quite sure what to think of Rosie's comment that there will be a cure in our lifetime. I know they say they are working for it, but....who wants to find a cure when there is so much money to be made when we all still have it. I

Caren 34 w/CF</end quote></div>

Not finding a cure to keep making money off of CF is an crazy comment. CF care is not a big money maker in the first place. Drug companies are not going to lose out if there is a cure found for CF, because most of the drug companies have nothing to do with CF meds. It's hard to get drug companies to invest in CF research and care because there is not that large of population to sell their services to. If anything, a cure could bring some company lots of money. I think if u asked most physicians what they thought about a cure for CF putting them out of business they would embrace this notion. I do think a cure is possible in most people's lifetime, 20-30 years. I don't think it will happen, but who's to say what the technology will bring in 10years. It's too draining to be so negative that there is no chance for a cure. If it's not going to be a cure, I at least hang my hopes that CF will be treatable like many other diseases are today.

 

[NoExcuses]

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

. I know they say they are working for it, but....who wants to find a cure when there is so much money to be made when we all still have it.



Caren 34 w/CF</end quote></div>

I have to second what Lori said.

If there is a cure, all CFers will have to take that cure med for the rest of their lives. And any amount can be charged for it.

Your logic is hopelessly flawed.

Any meds that CFers are on, most are drained financially anyhow, so not much can be charged and people demand free meds. I'm sure Novartis is regretting the day they decided to develop a CF med like Pulmozyme - there are only 30,000 of us in the US and I'm sure they're no where near re-cooping their R&D costs for the med.

Any company that comes up with a med for the cure can charge anything they want - and insurances would have to cover it. You need to re-think your logica, Caren.

 

[NoExcuses]

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

. I know they say they are working for it, but....who wants to find a cure when there is so much money to be made when we all still have it.



Caren 34 w/CF</end quote></div>

I have to second what Lori said.

If there is a cure, all CFers will have to take that cure med for the rest of their lives. And any amount can be charged for it.

Your logic is hopelessly flawed.

Any meds that CFers are on, most are drained financially anyhow, so not much can be charged and people demand free meds. I'm sure Novartis is regretting the day they decided to develop a CF med like Pulmozyme - there are only 30,000 of us in the US and I'm sure they're no where near re-cooping their R&D costs for the med.

Any company that comes up with a med for the cure can charge anything they want - and insurances would have to cover it. You need to re-think your logica, Caren.

 

[NoExcuses]

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

. I know they say they are working for it, but....who wants to find a cure when there is so much money to be made when we all still have it.



Caren 34 w/CF</end quote></div>

I have to second what Lori said.

If there is a cure, all CFers will have to take that cure med for the rest of their lives. And any amount can be charged for it.

Your logic is hopelessly flawed.

Any meds that CFers are on, most are drained financially anyhow, so not much can be charged and people demand free meds. I'm sure Novartis is regretting the day they decided to develop a CF med like Pulmozyme - there are only 30,000 of us in the US and I'm sure they're no where near re-cooping their R&D costs for the med.

Any company that comes up with a med for the cure can charge anything they want - and insurances would have to cover it. You need to re-think your logica, Caren.

 

[Chaggie]

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


I have to second what Lori said.



If there is a cure, all CFers will have to take that cure med for the rest of their lives. And any amount can be charged for it.



Your logic is hopelessly flawed.



Any meds that CFers are on, most are drained financially anyhow, so not much can be charged and people demand free meds. I'm sure Novartis is regretting the day they decided to develop a CF med like Pulmozyme - there are only 30,000 of us in the US and I'm sure they're no where near re-cooping their R&D costs for the med.



Any company that comes up with a med for the cure can charge anything they want - and insurances would have to cover it. You need to re-think your logica, Caren.</end quote></div>

Novartis? I thought it was Genentech. ; )

 

[Chaggie]

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


I have to second what Lori said.



If there is a cure, all CFers will have to take that cure med for the rest of their lives. And any amount can be charged for it.



Your logic is hopelessly flawed.



Any meds that CFers are on, most are drained financially anyhow, so not much can be charged and people demand free meds. I'm sure Novartis is regretting the day they decided to develop a CF med like Pulmozyme - there are only 30,000 of us in the US and I'm sure they're no where near re-cooping their R&D costs for the med.



Any company that comes up with a med for the cure can charge anything they want - and insurances would have to cover it. You need to re-think your logica, Caren.</end quote></div>

Novartis? I thought it was Genentech. ; )

 

[Chaggie]

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


I have to second what Lori said.



If there is a cure, all CFers will have to take that cure med for the rest of their lives. And any amount can be charged for it.



Your logic is hopelessly flawed.



Any meds that CFers are on, most are drained financially anyhow, so not much can be charged and people demand free meds. I'm sure Novartis is regretting the day they decided to develop a CF med like Pulmozyme - there are only 30,000 of us in the US and I'm sure they're no where near re-cooping their R&D costs for the med.



Any company that comes up with a med for the cure can charge anything they want - and insurances would have to cover it. You need to re-think your logica, Caren.</end quote></div>

Novartis? I thought it was Genentech. ; )

 

[cfcndlelady]

I wasn't just talking about CF ( or at least, i didn't mean just CF) YEs, i understand that there are some doctors who would applaud a cure. But if you stop and think about ANY disease....there is more money in the disease being active than in the cure.

I would love to see a cure in my lifetime, i'm just not banking on it.

Caren 34 w/cf

 

[cfcndlelady]

I wasn't just talking about CF ( or at least, i didn't mean just CF) YEs, i understand that there are some doctors who would applaud a cure. But if you stop and think about ANY disease....there is more money in the disease being active than in the cure.

I would love to see a cure in my lifetime, i'm just not banking on it.

Caren 34 w/cf

 

[cfcndlelady]

I wasn't just talking about CF ( or at least, i didn't mean just CF) YEs, i understand that there are some doctors who would applaud a cure. But if you stop and think about ANY disease....there is more money in the disease being active than in the cure.

I would love to see a cure in my lifetime, i'm just not banking on it.

Caren 34 w/cf

 

[Jane]

I didn't get to see it, but my mom told me it was great!

Rosie does have a nephew with CF, who I believe is still living. The joey fund (established in 1986) is named after Joey O'Donnell of Massachusetts who died when he was 12. His dad, also named Joe is a very visable fundraiser in this area. I don't believe it is the same family. We looked into the connection a few years ago, but were never able to find one. Its interesting, do any of you know for sure?

 

[Jane]

I didn't get to see it, but my mom told me it was great!

Rosie does have a nephew with CF, who I believe is still living. The joey fund (established in 1986) is named after Joey O'Donnell of Massachusetts who died when he was 12. His dad, also named Joe is a very visable fundraiser in this area. I don't believe it is the same family. We looked into the connection a few years ago, but were never able to find one. Its interesting, do any of you know for sure?

 

[Jane]

I didn't get to see it, but my mom told me it was great!

Rosie does have a nephew with CF, who I believe is still living. The joey fund (established in 1986) is named after Joey O'Donnell of Massachusetts who died when he was 12. His dad, also named Joe is a very visable fundraiser in this area. I don't believe it is the same family. We looked into the connection a few years ago, but were never able to find one. Its interesting, do any of you know for sure?

 

[twistedlibrarian]

I am glad to know that some of you still believe in optimism. I have been hearing that my whole life, that a cure would come soon, just because it hasn't come yet, I'm not going to stop hoping that it will. People say these things based on the rate of progress with gene therapy and such, and knowledge of new discoveries about cf. They aren't just shooting in the dark. They may or may not be right, but let them say what they want to. Why would you criticize anyone for trying to spread a message of hope? Nothing is wrong with being positive. I think that we need to believe that. I for one, don't dismiss the possibility of a cure, though I'm not going to argue with anyone about it. I just believe that faith is really important. It's what keeps the human heart alive.

 

[twistedlibrarian]

I am glad to know that some of you still believe in optimism. I have been hearing that my whole life, that a cure would come soon, just because it hasn't come yet, I'm not going to stop hoping that it will. People say these things based on the rate of progress with gene therapy and such, and knowledge of new discoveries about cf. They aren't just shooting in the dark. They may or may not be right, but let them say what they want to. Why would you criticize anyone for trying to spread a message of hope? Nothing is wrong with being positive. I think that we need to believe that. I for one, don't dismiss the possibility of a cure, though I'm not going to argue with anyone about it. I just believe that faith is really important. It's what keeps the human heart alive.