Denufosol

J

jdubbs

New member
I thought, and still do, that this was an exciting bit of news. Yes, we should temper our enthusiasm, but this is a promising drug. It appears to improve pft measures above and beyond all of our current treatments. Just because the trial is powered to pass through the FDA as quickly as possible, doesn't mean it won't help people with lower PFTs (<75%). That said, it's understandable to be upset you can't participate in the trial.

I don't know exact dollars, but from what I can tell, CF research is very well funded. While Chris Rock has many valid points, I think the cure is also significantly harder to find than sympomatic treatments. But this is precisely why this drug is so exciting. It's not just another antibiotic or mucolytic, but it's going to the source of the defect.

-James 32 w/ cf
 
J

jdubbs

New member
I thought, and still do, that this was an exciting bit of news. Yes, we should temper our enthusiasm, but this is a promising drug. It appears to improve pft measures above and beyond all of our current treatments. Just because the trial is powered to pass through the FDA as quickly as possible, doesn't mean it won't help people with lower PFTs (<75%). That said, it's understandable to be upset you can't participate in the trial.

I don't know exact dollars, but from what I can tell, CF research is very well funded. While Chris Rock has many valid points, I think the cure is also significantly harder to find than sympomatic treatments. But this is precisely why this drug is so exciting. It's not just another antibiotic or mucolytic, but it's going to the source of the defect.

-James 32 w/ cf
 
J

jdubbs

New member
I thought, and still do, that this was an exciting bit of news. Yes, we should temper our enthusiasm, but this is a promising drug. It appears to improve pft measures above and beyond all of our current treatments. Just because the trial is powered to pass through the FDA as quickly as possible, doesn't mean it won't help people with lower PFTs (<75%). That said, it's understandable to be upset you can't participate in the trial.

I don't know exact dollars, but from what I can tell, CF research is very well funded. While Chris Rock has many valid points, I think the cure is also significantly harder to find than sympomatic treatments. But this is precisely why this drug is so exciting. It's not just another antibiotic or mucolytic, but it's going to the source of the defect.

-James 32 w/ cf
 
J

jdubbs

New member
I thought, and still do, that this was an exciting bit of news. Yes, we should temper our enthusiasm, but this is a promising drug. It appears to improve pft measures above and beyond all of our current treatments. Just because the trial is powered to pass through the FDA as quickly as possible, doesn't mean it won't help people with lower PFTs (<75%). That said, it's understandable to be upset you can't participate in the trial.

I don't know exact dollars, but from what I can tell, CF research is very well funded. While Chris Rock has many valid points, I think the cure is also significantly harder to find than sympomatic treatments. But this is precisely why this drug is so exciting. It's not just another antibiotic or mucolytic, but it's going to the source of the defect.

-James 32 w/ cf
 
J

jdubbs

New member
I thought, and still do, that this was an exciting bit of news. Yes, we should temper our enthusiasm, but this is a promising drug. It appears to improve pft measures above and beyond all of our current treatments. Just because the trial is powered to pass through the FDA as quickly as possible, doesn't mean it won't help people with lower PFTs (<75%). That said, it's understandable to be upset you can't participate in the trial.
<br />
<br />I don't know exact dollars, but from what I can tell, CF research is very well funded. While Chris Rock has many valid points, I think the cure is also significantly harder to find than sympomatic treatments. But this is precisely why this drug is so exciting. It's not just another antibiotic or mucolytic, but it's going to the source of the defect.
<br />
<br />-James 32 w/ cf
 
N

NoExcuses

New member
i'm 95% sure that denufosol would replace HTS.

what a great problem to have - having to chose from many meds on the market for CFer's. I know 10+ people that died of cF that I knew in the 80s and 90s that would have given anything to have this problem.

think - we've seen a ridiculous increase in CF life expectancy in the past 15 years or so. It's not due to cures - it's due to meds that better treat symptoms. Yes, denufosol isn't a cure but it's certainly worth the years of investment and will serve to make many CFers healthier. just because it isn't a cure doesn't mean it won't carry many cFers to the next treatment that will be life-extending.

what's the alternative? spending 100% of the money on finding a cure and 0% on life-extending meds so that everyone dies until there's a cure? i would prefer a more balanced approach.
 
N

NoExcuses

New member
i'm 95% sure that denufosol would replace HTS.

what a great problem to have - having to chose from many meds on the market for CFer's. I know 10+ people that died of cF that I knew in the 80s and 90s that would have given anything to have this problem.

think - we've seen a ridiculous increase in CF life expectancy in the past 15 years or so. It's not due to cures - it's due to meds that better treat symptoms. Yes, denufosol isn't a cure but it's certainly worth the years of investment and will serve to make many CFers healthier. just because it isn't a cure doesn't mean it won't carry many cFers to the next treatment that will be life-extending.

what's the alternative? spending 100% of the money on finding a cure and 0% on life-extending meds so that everyone dies until there's a cure? i would prefer a more balanced approach.
 
N

NoExcuses

New member
i'm 95% sure that denufosol would replace HTS.

what a great problem to have - having to chose from many meds on the market for CFer's. I know 10+ people that died of cF that I knew in the 80s and 90s that would have given anything to have this problem.

think - we've seen a ridiculous increase in CF life expectancy in the past 15 years or so. It's not due to cures - it's due to meds that better treat symptoms. Yes, denufosol isn't a cure but it's certainly worth the years of investment and will serve to make many CFers healthier. just because it isn't a cure doesn't mean it won't carry many cFers to the next treatment that will be life-extending.

what's the alternative? spending 100% of the money on finding a cure and 0% on life-extending meds so that everyone dies until there's a cure? i would prefer a more balanced approach.
 
N

NoExcuses

New member
i'm 95% sure that denufosol would replace HTS.

what a great problem to have - having to chose from many meds on the market for CFer's. I know 10+ people that died of cF that I knew in the 80s and 90s that would have given anything to have this problem.

think - we've seen a ridiculous increase in CF life expectancy in the past 15 years or so. It's not due to cures - it's due to meds that better treat symptoms. Yes, denufosol isn't a cure but it's certainly worth the years of investment and will serve to make many CFers healthier. just because it isn't a cure doesn't mean it won't carry many cFers to the next treatment that will be life-extending.

what's the alternative? spending 100% of the money on finding a cure and 0% on life-extending meds so that everyone dies until there's a cure? i would prefer a more balanced approach.
 
N

NoExcuses

New member
i'm 95% sure that denufosol would replace HTS.
<br />
<br />what a great problem to have - having to chose from many meds on the market for CFer's. I know 10+ people that died of cF that I knew in the 80s and 90s that would have given anything to have this problem.
<br />
<br />think - we've seen a ridiculous increase in CF life expectancy in the past 15 years or so. It's not due to cures - it's due to meds that better treat symptoms. Yes, denufosol isn't a cure but it's certainly worth the years of investment and will serve to make many CFers healthier. just because it isn't a cure doesn't mean it won't carry many cFers to the next treatment that will be life-extending.
<br />
<br />what's the alternative? spending 100% of the money on finding a cure and 0% on life-extending meds so that everyone dies until there's a cure? i would prefer a more balanced approach.
 
L

lmattaway

New member
amen, amy. well put.

just a side note: i'm one of those over 75% that CAN participate in this study (actually starting it next week) and i'm very excited. too many times the studies that come out require a much lower FEV1 % and i'm usually not qualified to help out(i fall above their max %), even though i very much want to participate and help further the cause.
 
L

lmattaway

New member
amen, amy. well put.

just a side note: i'm one of those over 75% that CAN participate in this study (actually starting it next week) and i'm very excited. too many times the studies that come out require a much lower FEV1 % and i'm usually not qualified to help out(i fall above their max %), even though i very much want to participate and help further the cause.
 
L

lmattaway

New member
amen, amy. well put.

just a side note: i'm one of those over 75% that CAN participate in this study (actually starting it next week) and i'm very excited. too many times the studies that come out require a much lower FEV1 % and i'm usually not qualified to help out(i fall above their max %), even though i very much want to participate and help further the cause.
 
L

lmattaway

New member
amen, amy. well put.

just a side note: i'm one of those over 75% that CAN participate in this study (actually starting it next week) and i'm very excited. too many times the studies that come out require a much lower FEV1 % and i'm usually not qualified to help out(i fall above their max %), even though i very much want to participate and help further the cause.
 
L

lmattaway

New member
amen, amy. well put.
<br />
<br />just a side note: i'm one of those over 75% that CAN participate in this study (actually starting it next week) and i'm very excited. too many times the studies that come out require a much lower FEV1 % and i'm usually not qualified to help out(i fall above their max %), even though i very much want to participate and help further the cause.
 
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