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2perfectboys
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also, about 1,000 new cases of CF are diagnoised each year while only 400 die every year, so there is about an extra 600 people with CF everyyear
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- Thread starter amber682
- Start date
Thanks for the replies everyone. I had no idea there were so few Australians with CF (or diagnosed atleast). I agree the numbers in Australia and the US are prob a little low because of undiagnosed or untreated CFers, or people who aren't registered w/ the CFF.
The "no new treatment advances in over a decade" threw me off, I guess. And the thing about nothing that improves hydration in the lungs. I thought HS did, but I guess that's not yet approved? Why are pulm and tobi considered the last advancements made? What about things like the vest or flutter, etc., have they all been around for over a decade?
Please excuse my ignorance on this one, my son's only 2 so I'm not too clear on what was going on with CF a decade ago.
The "no new treatment advances in over a decade" threw me off, I guess. And the thing about nothing that improves hydration in the lungs. I thought HS did, but I guess that's not yet approved? Why are pulm and tobi considered the last advancements made? What about things like the vest or flutter, etc., have they all been around for over a decade?
Please excuse my ignorance on this one, my son's only 2 so I'm not too clear on what was going on with CF a decade ago.
Thanks for the replies everyone. I had no idea there were so few Australians with CF (or diagnosed atleast). I agree the numbers in Australia and the US are prob a little low because of undiagnosed or untreated CFers, or people who aren't registered w/ the CFF.
The "no new treatment advances in over a decade" threw me off, I guess. And the thing about nothing that improves hydration in the lungs. I thought HS did, but I guess that's not yet approved? Why are pulm and tobi considered the last advancements made? What about things like the vest or flutter, etc., have they all been around for over a decade?
Please excuse my ignorance on this one, my son's only 2 so I'm not too clear on what was going on with CF a decade ago.
The "no new treatment advances in over a decade" threw me off, I guess. And the thing about nothing that improves hydration in the lungs. I thought HS did, but I guess that's not yet approved? Why are pulm and tobi considered the last advancements made? What about things like the vest or flutter, etc., have they all been around for over a decade?
Please excuse my ignorance on this one, my son's only 2 so I'm not too clear on what was going on with CF a decade ago.
Thanks for the replies everyone. I had no idea there were so few Australians with CF (or diagnosed atleast). I agree the numbers in Australia and the US are prob a little low because of undiagnosed or untreated CFers, or people who aren't registered w/ the CFF.
The "no new treatment advances in over a decade" threw me off, I guess. And the thing about nothing that improves hydration in the lungs. I thought HS did, but I guess that's not yet approved? Why are pulm and tobi considered the last advancements made? What about things like the vest or flutter, etc., have they all been around for over a decade?
Please excuse my ignorance on this one, my son's only 2 so I'm not too clear on what was going on with CF a decade ago.
The "no new treatment advances in over a decade" threw me off, I guess. And the thing about nothing that improves hydration in the lungs. I thought HS did, but I guess that's not yet approved? Why are pulm and tobi considered the last advancements made? What about things like the vest or flutter, etc., have they all been around for over a decade?
Please excuse my ignorance on this one, my son's only 2 so I'm not too clear on what was going on with CF a decade ago.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amber682</b></i>
Thanks for the replies everyone. I had no idea there were so few Australians with CF (or diagnosed atleast). I agree the numbers in Australia and the US are prob a little low because of undiagnosed or untreated CFers, or people who aren't registered w/ the CFF.
The "no new treatment advances in over a decade" threw me off, I guess. And the thing about nothing that improves hydration in the lungs. I thought HS did, but I guess that's not yet approved? Why are pulm and tobi considered the last advancements made? What about things like the vest or flutter, etc., have they all been around for over a decade?
Please excuse my ignorance on this one, my son's only 2 so I'm not too clear on what was going on with CF a decade ago.</end quote></div>
1. Australians have a smaller population than the US, so it would make sense that they have fewer CFers.
2. Pulmozyme, when approved in the early 90s, was the 1st new treatment for CF in 2-3 decades if memory services. Then TOBI came out in the mid 90s as well.
3. Hypertonic Saline really isn't a med - it's just salt water. It's prescription, yes, but other than anecdotal evience, there haven't been approval studies submitted to the FDA for CF use because it's not a branded med. No generic company nor the CFF will submit a med for approval for the FDA, spend millions of dollars, etc, when does can use it off label just the same.
4. The Vest and the flutter have been around since the early-mid 90s as well.
5. Other off label meds such as azithromycin, again now generic, is used in CF for anti-inflammatory purposes. No entity will go for FDA approval of zithromax's use in CF because the med is already on the market and can just be used off label.
<b>Bottomline </b> - all this activity in the 90s is why you've seen average age of death of a CFer in the US go from age 18 in 1981 to age 37 in 2005. That's a huge jump in 24 years.
And much of this development has come from fundraising efforts in the 70s and 80s. It takes so long to study meds, that research money that is raised today will help develop meds that will come to the market in another 10 or 20 years.
Thanks for the replies everyone. I had no idea there were so few Australians with CF (or diagnosed atleast). I agree the numbers in Australia and the US are prob a little low because of undiagnosed or untreated CFers, or people who aren't registered w/ the CFF.
The "no new treatment advances in over a decade" threw me off, I guess. And the thing about nothing that improves hydration in the lungs. I thought HS did, but I guess that's not yet approved? Why are pulm and tobi considered the last advancements made? What about things like the vest or flutter, etc., have they all been around for over a decade?
Please excuse my ignorance on this one, my son's only 2 so I'm not too clear on what was going on with CF a decade ago.</end quote></div>
1. Australians have a smaller population than the US, so it would make sense that they have fewer CFers.
2. Pulmozyme, when approved in the early 90s, was the 1st new treatment for CF in 2-3 decades if memory services. Then TOBI came out in the mid 90s as well.
3. Hypertonic Saline really isn't a med - it's just salt water. It's prescription, yes, but other than anecdotal evience, there haven't been approval studies submitted to the FDA for CF use because it's not a branded med. No generic company nor the CFF will submit a med for approval for the FDA, spend millions of dollars, etc, when does can use it off label just the same.
4. The Vest and the flutter have been around since the early-mid 90s as well.
5. Other off label meds such as azithromycin, again now generic, is used in CF for anti-inflammatory purposes. No entity will go for FDA approval of zithromax's use in CF because the med is already on the market and can just be used off label.
<b>Bottomline </b> - all this activity in the 90s is why you've seen average age of death of a CFer in the US go from age 18 in 1981 to age 37 in 2005. That's a huge jump in 24 years.
And much of this development has come from fundraising efforts in the 70s and 80s. It takes so long to study meds, that research money that is raised today will help develop meds that will come to the market in another 10 or 20 years.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amber682</b></i>
Thanks for the replies everyone. I had no idea there were so few Australians with CF (or diagnosed atleast). I agree the numbers in Australia and the US are prob a little low because of undiagnosed or untreated CFers, or people who aren't registered w/ the CFF.
The "no new treatment advances in over a decade" threw me off, I guess. And the thing about nothing that improves hydration in the lungs. I thought HS did, but I guess that's not yet approved? Why are pulm and tobi considered the last advancements made? What about things like the vest or flutter, etc., have they all been around for over a decade?
Please excuse my ignorance on this one, my son's only 2 so I'm not too clear on what was going on with CF a decade ago.</end quote></div>
1. Australians have a smaller population than the US, so it would make sense that they have fewer CFers.
2. Pulmozyme, when approved in the early 90s, was the 1st new treatment for CF in 2-3 decades if memory services. Then TOBI came out in the mid 90s as well.
3. Hypertonic Saline really isn't a med - it's just salt water. It's prescription, yes, but other than anecdotal evience, there haven't been approval studies submitted to the FDA for CF use because it's not a branded med. No generic company nor the CFF will submit a med for approval for the FDA, spend millions of dollars, etc, when does can use it off label just the same.
4. The Vest and the flutter have been around since the early-mid 90s as well.
5. Other off label meds such as azithromycin, again now generic, is used in CF for anti-inflammatory purposes. No entity will go for FDA approval of zithromax's use in CF because the med is already on the market and can just be used off label.
<b>Bottomline </b> - all this activity in the 90s is why you've seen average age of death of a CFer in the US go from age 18 in 1981 to age 37 in 2005. That's a huge jump in 24 years.
And much of this development has come from fundraising efforts in the 70s and 80s. It takes so long to study meds, that research money that is raised today will help develop meds that will come to the market in another 10 or 20 years.
Thanks for the replies everyone. I had no idea there were so few Australians with CF (or diagnosed atleast). I agree the numbers in Australia and the US are prob a little low because of undiagnosed or untreated CFers, or people who aren't registered w/ the CFF.
The "no new treatment advances in over a decade" threw me off, I guess. And the thing about nothing that improves hydration in the lungs. I thought HS did, but I guess that's not yet approved? Why are pulm and tobi considered the last advancements made? What about things like the vest or flutter, etc., have they all been around for over a decade?
Please excuse my ignorance on this one, my son's only 2 so I'm not too clear on what was going on with CF a decade ago.</end quote></div>
1. Australians have a smaller population than the US, so it would make sense that they have fewer CFers.
2. Pulmozyme, when approved in the early 90s, was the 1st new treatment for CF in 2-3 decades if memory services. Then TOBI came out in the mid 90s as well.
3. Hypertonic Saline really isn't a med - it's just salt water. It's prescription, yes, but other than anecdotal evience, there haven't been approval studies submitted to the FDA for CF use because it's not a branded med. No generic company nor the CFF will submit a med for approval for the FDA, spend millions of dollars, etc, when does can use it off label just the same.
4. The Vest and the flutter have been around since the early-mid 90s as well.
5. Other off label meds such as azithromycin, again now generic, is used in CF for anti-inflammatory purposes. No entity will go for FDA approval of zithromax's use in CF because the med is already on the market and can just be used off label.
<b>Bottomline </b> - all this activity in the 90s is why you've seen average age of death of a CFer in the US go from age 18 in 1981 to age 37 in 2005. That's a huge jump in 24 years.
And much of this development has come from fundraising efforts in the 70s and 80s. It takes so long to study meds, that research money that is raised today will help develop meds that will come to the market in another 10 or 20 years.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amber682</b></i>
Thanks for the replies everyone. I had no idea there were so few Australians with CF (or diagnosed atleast). I agree the numbers in Australia and the US are prob a little low because of undiagnosed or untreated CFers, or people who aren't registered w/ the CFF.
The "no new treatment advances in over a decade" threw me off, I guess. And the thing about nothing that improves hydration in the lungs. I thought HS did, but I guess that's not yet approved? Why are pulm and tobi considered the last advancements made? What about things like the vest or flutter, etc., have they all been around for over a decade?
Please excuse my ignorance on this one, my son's only 2 so I'm not too clear on what was going on with CF a decade ago.</end quote></div>
1. Australians have a smaller population than the US, so it would make sense that they have fewer CFers.
2. Pulmozyme, when approved in the early 90s, was the 1st new treatment for CF in 2-3 decades if memory services. Then TOBI came out in the mid 90s as well.
3. Hypertonic Saline really isn't a med - it's just salt water. It's prescription, yes, but other than anecdotal evience, there haven't been approval studies submitted to the FDA for CF use because it's not a branded med. No generic company nor the CFF will submit a med for approval for the FDA, spend millions of dollars, etc, when does can use it off label just the same.
4. The Vest and the flutter have been around since the early-mid 90s as well.
5. Other off label meds such as azithromycin, again now generic, is used in CF for anti-inflammatory purposes. No entity will go for FDA approval of zithromax's use in CF because the med is already on the market and can just be used off label.
<b>Bottomline </b> - all this activity in the 90s is why you've seen average age of death of a CFer in the US go from age 18 in 1981 to age 37 in 2005. That's a huge jump in 24 years.
And much of this development has come from fundraising efforts in the 70s and 80s. It takes so long to study meds, that research money that is raised today will help develop meds that will come to the market in another 10 or 20 years.
Thanks for the replies everyone. I had no idea there were so few Australians with CF (or diagnosed atleast). I agree the numbers in Australia and the US are prob a little low because of undiagnosed or untreated CFers, or people who aren't registered w/ the CFF.
The "no new treatment advances in over a decade" threw me off, I guess. And the thing about nothing that improves hydration in the lungs. I thought HS did, but I guess that's not yet approved? Why are pulm and tobi considered the last advancements made? What about things like the vest or flutter, etc., have they all been around for over a decade?
Please excuse my ignorance on this one, my son's only 2 so I'm not too clear on what was going on with CF a decade ago.</end quote></div>
1. Australians have a smaller population than the US, so it would make sense that they have fewer CFers.
2. Pulmozyme, when approved in the early 90s, was the 1st new treatment for CF in 2-3 decades if memory services. Then TOBI came out in the mid 90s as well.
3. Hypertonic Saline really isn't a med - it's just salt water. It's prescription, yes, but other than anecdotal evience, there haven't been approval studies submitted to the FDA for CF use because it's not a branded med. No generic company nor the CFF will submit a med for approval for the FDA, spend millions of dollars, etc, when does can use it off label just the same.
4. The Vest and the flutter have been around since the early-mid 90s as well.
5. Other off label meds such as azithromycin, again now generic, is used in CF for anti-inflammatory purposes. No entity will go for FDA approval of zithromax's use in CF because the med is already on the market and can just be used off label.
<b>Bottomline </b> - all this activity in the 90s is why you've seen average age of death of a CFer in the US go from age 18 in 1981 to age 37 in 2005. That's a huge jump in 24 years.
And much of this development has come from fundraising efforts in the 70s and 80s. It takes so long to study meds, that research money that is raised today will help develop meds that will come to the market in another 10 or 20 years.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Alyssa</b></i>
I know Pulmozyme came out in the 80's, I don't know about Tobi and I believe the recent use of 7% saline is suppose to help hydrated the lungs but that has not been officially declared as a "new" or "approved" drug treatment, the CF docs are just prescribing it.</end quote></div>
Alyssa, i think the use of hypertonic saline isn't new at all, just reinvented. I told a childrens doctor in the hospital close to home where i go to to get my port flushed, that i started taking it, last march i think. And he said he had always been using that in South Africa (where he comes from) cause they didn't have something like Pulmozyme. I guess they reinvented it in the western world <img src="">
I know Pulmozyme came out in the 80's, I don't know about Tobi and I believe the recent use of 7% saline is suppose to help hydrated the lungs but that has not been officially declared as a "new" or "approved" drug treatment, the CF docs are just prescribing it.</end quote></div>
Alyssa, i think the use of hypertonic saline isn't new at all, just reinvented. I told a childrens doctor in the hospital close to home where i go to to get my port flushed, that i started taking it, last march i think. And he said he had always been using that in South Africa (where he comes from) cause they didn't have something like Pulmozyme. I guess they reinvented it in the western world <img src="">
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Alyssa</b></i>
I know Pulmozyme came out in the 80's, I don't know about Tobi and I believe the recent use of 7% saline is suppose to help hydrated the lungs but that has not been officially declared as a "new" or "approved" drug treatment, the CF docs are just prescribing it.</end quote></div>
Alyssa, i think the use of hypertonic saline isn't new at all, just reinvented. I told a childrens doctor in the hospital close to home where i go to to get my port flushed, that i started taking it, last march i think. And he said he had always been using that in South Africa (where he comes from) cause they didn't have something like Pulmozyme. I guess they reinvented it in the western world <img src="">
I know Pulmozyme came out in the 80's, I don't know about Tobi and I believe the recent use of 7% saline is suppose to help hydrated the lungs but that has not been officially declared as a "new" or "approved" drug treatment, the CF docs are just prescribing it.</end quote></div>
Alyssa, i think the use of hypertonic saline isn't new at all, just reinvented. I told a childrens doctor in the hospital close to home where i go to to get my port flushed, that i started taking it, last march i think. And he said he had always been using that in South Africa (where he comes from) cause they didn't have something like Pulmozyme. I guess they reinvented it in the western world <img src="">
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Alyssa</b></i>
I know Pulmozyme came out in the 80's, I don't know about Tobi and I believe the recent use of 7% saline is suppose to help hydrated the lungs but that has not been officially declared as a "new" or "approved" drug treatment, the CF docs are just prescribing it.</end quote></div>
Alyssa, i think the use of hypertonic saline isn't new at all, just reinvented. I told a childrens doctor in the hospital close to home where i go to to get my port flushed, that i started taking it, last march i think. And he said he had always been using that in South Africa (where he comes from) cause they didn't have something like Pulmozyme. I guess they reinvented it in the western world <img src="">
I know Pulmozyme came out in the 80's, I don't know about Tobi and I believe the recent use of 7% saline is suppose to help hydrated the lungs but that has not been officially declared as a "new" or "approved" drug treatment, the CF docs are just prescribing it.</end quote></div>
Alyssa, i think the use of hypertonic saline isn't new at all, just reinvented. I told a childrens doctor in the hospital close to home where i go to to get my port flushed, that i started taking it, last march i think. And he said he had always been using that in South Africa (where he comes from) cause they didn't have something like Pulmozyme. I guess they reinvented it in the western world <img src="">
Very well said sakasuka.
I just wanted to add that one of the research docs here in Seattle mentioned at a parent information meeting something about government money for research had changed drastically in recent years (less, not more) and that was making things tough. I think that corresponds well with what you said too about things coming out in the early 90's and the delay between discovery vs approval for use.
To Marjolein -- thanks for the info... that sounds about right
Re-invented for the west. At a profit no less I'm sure.... at $1 or more per day for salt water.
I just wanted to add that one of the research docs here in Seattle mentioned at a parent information meeting something about government money for research had changed drastically in recent years (less, not more) and that was making things tough. I think that corresponds well with what you said too about things coming out in the early 90's and the delay between discovery vs approval for use.
To Marjolein -- thanks for the info... that sounds about right
Re-invented for the west. At a profit no less I'm sure.... at $1 or more per day for salt water.Very well said sakasuka.
I just wanted to add that one of the research docs here in Seattle mentioned at a parent information meeting something about government money for research had changed drastically in recent years (less, not more) and that was making things tough. I think that corresponds well with what you said too about things coming out in the early 90's and the delay between discovery vs approval for use.
To Marjolein -- thanks for the info... that sounds about right Re-invented for the west. At a profit no less I'm sure.... at $1 or more per day for salt water.
I just wanted to add that one of the research docs here in Seattle mentioned at a parent information meeting something about government money for research had changed drastically in recent years (less, not more) and that was making things tough. I think that corresponds well with what you said too about things coming out in the early 90's and the delay between discovery vs approval for use.
To Marjolein -- thanks for the info... that sounds about right
Re-invented for the west. At a profit no less I'm sure.... at $1 or more per day for salt water.Very well said sakasuka.
I just wanted to add that one of the research docs here in Seattle mentioned at a parent information meeting something about government money for research had changed drastically in recent years (less, not more) and that was making things tough. I think that corresponds well with what you said too about things coming out in the early 90's and the delay between discovery vs approval for use.
To Marjolein -- thanks for the info... that sounds about right Re-invented for the west. At a profit no less I'm sure.... at $1 or more per day for salt water.
I just wanted to add that one of the research docs here in Seattle mentioned at a parent information meeting something about government money for research had changed drastically in recent years (less, not more) and that was making things tough. I think that corresponds well with what you said too about things coming out in the early 90's and the delay between discovery vs approval for use.
To Marjolein -- thanks for the info... that sounds about right
Re-invented for the west. At a profit no less I'm sure.... at $1 or more per day for salt water.I did find it a little amusing that the article didn't spell "Sydney" correctly!
Going by percentages of population, those figures give a CF rate in Australia of ~0.012% and USA ~0.011%. Australia has compulsory newborn screening so that could explain the teeny tiny difference... then again, the figures could just be estimates.
I think the decade figure is correct. As others have said, Pulmozyme is from the mid-nineties and TOBI as well. However, previous to TOBI people were already using inhaled tobramycin.
There's been some publicity about Bronchitol over here. It seems quite promising.
Going by percentages of population, those figures give a CF rate in Australia of ~0.012% and USA ~0.011%. Australia has compulsory newborn screening so that could explain the teeny tiny difference... then again, the figures could just be estimates.
I think the decade figure is correct. As others have said, Pulmozyme is from the mid-nineties and TOBI as well. However, previous to TOBI people were already using inhaled tobramycin.
There's been some publicity about Bronchitol over here. It seems quite promising.
I did find it a little amusing that the article didn't spell "Sydney" correctly!
Going by percentages of population, those figures give a CF rate in Australia of ~0.012% and USA ~0.011%. Australia has compulsory newborn screening so that could explain the teeny tiny difference... then again, the figures could just be estimates.
I think the decade figure is correct. As others have said, Pulmozyme is from the mid-nineties and TOBI as well. However, previous to TOBI people were already using inhaled tobramycin.
There's been some publicity about Bronchitol over here. It seems quite promising.
Going by percentages of population, those figures give a CF rate in Australia of ~0.012% and USA ~0.011%. Australia has compulsory newborn screening so that could explain the teeny tiny difference... then again, the figures could just be estimates.
I think the decade figure is correct. As others have said, Pulmozyme is from the mid-nineties and TOBI as well. However, previous to TOBI people were already using inhaled tobramycin.
There's been some publicity about Bronchitol over here. It seems quite promising.
I did find it a little amusing that the article didn't spell "Sydney" correctly!
Going by percentages of population, those figures give a CF rate in Australia of ~0.012% and USA ~0.011%. Australia has compulsory newborn screening so that could explain the teeny tiny difference... then again, the figures could just be estimates.
I think the decade figure is correct. As others have said, Pulmozyme is from the mid-nineties and TOBI as well. However, previous to TOBI people were already using inhaled tobramycin.
There's been some publicity about Bronchitol over here. It seems quite promising.
Going by percentages of population, those figures give a CF rate in Australia of ~0.012% and USA ~0.011%. Australia has compulsory newborn screening so that could explain the teeny tiny difference... then again, the figures could just be estimates.
I think the decade figure is correct. As others have said, Pulmozyme is from the mid-nineties and TOBI as well. However, previous to TOBI people were already using inhaled tobramycin.
There's been some publicity about Bronchitol over here. It seems quite promising.