ok, im confused! (posted in adults also)

[crickit715]

ok, so i understand that when they say on the cff.org website that 37yr of age is the MEDIAN age that it does not mean "average" age people live to with cf...but how can that be if this article states that today only 47% of people with cf live beyond the age of 18?????? (does this seem contradictory or am i reading it wrong?)





ABCNews.com: "Many with Cystic Fibrosis Living Longer"

June 25, 2010

When Kevin Przybyl of Orlando was born with cystic fibrosis 30 years ago, his doctors predicted he would not live past age 13. Today, he is married, raising a son and running a bass fishing guide business.

ABCNews.com features Przybyl in a story today about the growing number of people with CF living into adulthood and beyond, thanks to advancements in treatments and care.

Data gathered by the Cystic Fibrosis Foundation, the story says, shows that a decade ago, only 35 percent of people with CF reached at least age 18. Today, that number has grown to 47 percent.

Further, researchers are now developing therapies aimed at correcting the underlying cause of cystic fibrosis.

"If we can get therapies that treat the function and basic defect of the disease, that's a game changer," said Dr. Bruce Marshall, vice president of clinical affairs at the Cystic Fibrosis Foundation. "We'd see people are dying with CF rather than from CF."

 

[crickit715]

ok, so i understand that when they say on the cff.org website that 37yr of age is the MEDIAN age that it does not mean "average" age people live to with cf...but how can that be if this article states that today only 47% of people with cf live beyond the age of 18?????? (does this seem contradictory or am i reading it wrong?)





ABCNews.com: "Many with Cystic Fibrosis Living Longer"

June 25, 2010

When Kevin Przybyl of Orlando was born with cystic fibrosis 30 years ago, his doctors predicted he would not live past age 13. Today, he is married, raising a son and running a bass fishing guide business.

ABCNews.com features Przybyl in a story today about the growing number of people with CF living into adulthood and beyond, thanks to advancements in treatments and care.

Data gathered by the Cystic Fibrosis Foundation, the story says, shows that a decade ago, only 35 percent of people with CF reached at least age 18. Today, that number has grown to 47 percent.

Further, researchers are now developing therapies aimed at correcting the underlying cause of cystic fibrosis.

"If we can get therapies that treat the function and basic defect of the disease, that's a game changer," said Dr. Bruce Marshall, vice president of clinical affairs at the Cystic Fibrosis Foundation. "We'd see people are dying with CF rather than from CF."

 

[crickit715]

ok, so i understand that when they say on the cff.org website that 37yr of age is the MEDIAN age that it does not mean "average" age people live to with cf...but how can that be if this article states that today only 47% of people with cf live beyond the age of 18?????? (does this seem contradictory or am i reading it wrong?)
<br />
<br />
<br />
<br />
<br />
<br />ABCNews.com: "Many with Cystic Fibrosis Living Longer"
<br />
<br />June 25, 2010
<br />
<br />When Kevin Przybyl of Orlando was born with cystic fibrosis 30 years ago, his doctors predicted he would not live past age 13. Today, he is married, raising a son and running a bass fishing guide business.
<br />
<br />ABCNews.com features Przybyl in a story today about the growing number of people with CF living into adulthood and beyond, thanks to advancements in treatments and care.
<br />
<br />Data gathered by the Cystic Fibrosis Foundation, the story says, shows that a decade ago, only 35 percent of people with CF reached at least age 18. Today, that number has grown to 47 percent.
<br />
<br />Further, researchers are now developing therapies aimed at correcting the underlying cause of cystic fibrosis.
<br />
<br />"If we can get therapies that treat the function and basic defect of the disease, that's a game changer," said Dr. Bruce Marshall, vice president of clinical affairs at the Cystic Fibrosis Foundation. "We'd see people are dying with CF rather than from CF."
<br />
<br />

 

[mlag2010]

sorry, but it doesnt say they didnt live past age 18 only that only thirty five percent a decade ago reached 18 yrs now that percentage is 47 percent a ten percent incrs in the number who reach eighteen yrs of age. this seems like a positive thing to me! no contradiction i can see... hope this helps....mlag

 

[mlag2010]

sorry, but it doesnt say they didnt live past age 18 only that only thirty five percent a decade ago reached 18 yrs now that percentage is 47 percent a ten percent incrs in the number who reach eighteen yrs of age. this seems like a positive thing to me! no contradiction i can see... hope this helps....mlag

 

[mlag2010]

sorry, but it doesnt say they didnt live past age 18 only that only thirty five percent a decade ago reached 18 yrs now that percentage is 47 percent a ten percent incrs in the number who reach eighteen yrs of age. this seems like a positive thing to me! no contradiction i can see... hope this helps....mlag

 

[crickit715]

hhmmm,....but wouldnt it be true if it says that 47% reach age 18 then wouldnt it go without saying that the other 53% do not reach age 18....am i correct???? (i mean of course it is great that the percentage is going up but then where do they get the age 37 median at????)

 

[crickit715]

hhmmm,....but wouldnt it be true if it says that 47% reach age 18 then wouldnt it go without saying that the other 53% do not reach age 18....am i correct???? (i mean of course it is great that the percentage is going up but then where do they get the age 37 median at????)

 

[crickit715]

hhmmm,....but wouldnt it be true if it says that 47% reach age 18 then wouldnt it go without saying that the other 53% do not reach age 18....am i correct???? (i mean of course it is great that the percentage is going up but then where do they get the age 37 median at????)

 

[hmw]

Ricki,
I saw this and was confused too. I don't understand how only 47% of the population can be older than 18, and yet the 'median age' we hear about ALL THE TIME be more than twice that.

I do understand that it's a positive change in the right direction, but the point here is very valid- on what data is the magic number of 37 we hear about so much based? Is it a fact-based number or a supposition based on how long they *assume* babies of today will live, mixed in with other factors? Assumptions don't cut it with me- if it's a projected number versus the reality of cf today, that needs to be made clear for us.

 

[hmw]

Ricki,
I saw this and was confused too. I don't understand how only 47% of the population can be older than 18, and yet the 'median age' we hear about ALL THE TIME be more than twice that.

I do understand that it's a positive change in the right direction, but the point here is very valid- on what data is the magic number of 37 we hear about so much based? Is it a fact-based number or a supposition based on how long they *assume* babies of today will live, mixed in with other factors? Assumptions don't cut it with me- if it's a projected number versus the reality of cf today, that needs to be made clear for us.

 

[hmw]

Ricki,
<br />I saw this and was confused too. I don't understand how only 47% of the population can be older than 18, and yet the 'median age' we hear about ALL THE TIME be more than twice that.
<br />
<br />I do understand that it's a positive change in the right direction, but the point here is very valid- on what data is the magic number of 37 we hear about so much based? Is it a fact-based number or a supposition based on how long they *assume* babies of today will live, mixed in with other factors? Assumptions don't cut it with me- if it's a projected number versus the reality of cf today, that needs to be made clear for us.

 

[kitomd21]

It is confusing! I don't believe that it's a number based upon a supposed projection - at least, I hope that's not the case! Doctor's cannot guarantee how well our children will fare, but I did have a doctor look me in the eye and say she believes the median age for a child born today will be more along the lines of into the 50s. I hope this is the case!

There is also an interesting plenary session online from the previous CF Conference that states they believe we're are able to achieve a 1% improvement in overall lung function decline(current average is approx. 2% per year). The session explains how drugs like Pulmozyme, HTS, Cayston (i.e., the "newer" CF drugs) may reasonably attain that 1% change. If this is the case, projected average age for lung transplant would be into the 60s.

There are no absolutes...CF may be the least of our troubles. I'll remain optimistic about the Vertex drugs in the meantime.

 

[kitomd21]

It is confusing! I don't believe that it's a number based upon a supposed projection - at least, I hope that's not the case! Doctor's cannot guarantee how well our children will fare, but I did have a doctor look me in the eye and say she believes the median age for a child born today will be more along the lines of into the 50s. I hope this is the case!

There is also an interesting plenary session online from the previous CF Conference that states they believe we're are able to achieve a 1% improvement in overall lung function decline(current average is approx. 2% per year). The session explains how drugs like Pulmozyme, HTS, Cayston (i.e., the "newer" CF drugs) may reasonably attain that 1% change. If this is the case, projected average age for lung transplant would be into the 60s.

There are no absolutes...CF may be the least of our troubles. I'll remain optimistic about the Vertex drugs in the meantime.

 

[kitomd21]

It is confusing! I don't believe that it's a number based upon a supposed projection - at least, I hope that's not the case! Doctor's cannot guarantee how well our children will fare, but I did have a doctor look me in the eye and say she believes the median age for a child born today will be more along the lines of into the 50s. I hope this is the case!
<br />
<br />There is also an interesting plenary session online from the previous CF Conference that states they believe we're are able to achieve a 1% improvement in overall lung function decline(current average is approx. 2% per year). The session explains how drugs like Pulmozyme, HTS, Cayston (i.e., the "newer" CF drugs) may reasonably attain that 1% change. If this is the case, projected average age for lung transplant would be into the 60s.
<br />
<br />There are no absolutes...CF may be the least of our troubles. I'll remain optimistic about the Vertex drugs in the meantime.

 

[Mommafirst]

I posted on the adult thread, but since I'm there on my lonesome, I'll post it here too....

I read this last week and had the same confused reaction. I can't really figure it out. I think it has to do with the fact that a median is a stupid way to report data and should never have been used in the first place. <img src="i/expressions/face-icon-small-wink.gif" border="0"> Median is the middle number, but not the middle of the entire span -- but the middle as in 100 people were reported if we put them in age order, what would the 50th person's age be. It still doesn't quell with the 47% making it to 18+ though, because then you'd need 49 people of the 100 being over 37 in some way or another and that doesn't make sense in relation to the 18+ thing.

So I'm with you -- I don't get it.

 

[Mommafirst]

I posted on the adult thread, but since I'm there on my lonesome, I'll post it here too....

I read this last week and had the same confused reaction. I can't really figure it out. I think it has to do with the fact that a median is a stupid way to report data and should never have been used in the first place. <img src="i/expressions/face-icon-small-wink.gif" border="0"> Median is the middle number, but not the middle of the entire span -- but the middle as in 100 people were reported if we put them in age order, what would the 50th person's age be. It still doesn't quell with the 47% making it to 18+ though, because then you'd need 49 people of the 100 being over 37 in some way or another and that doesn't make sense in relation to the 18+ thing.

So I'm with you -- I don't get it.

 

[Mommafirst]

I posted on the adult thread, but since I'm there on my lonesome, I'll post it here too....
<br />
<br />I read this last week and had the same confused reaction. I can't really figure it out. I think it has to do with the fact that a median is a stupid way to report data and should never have been used in the first place. <img src="i/expressions/face-icon-small-wink.gif" border="0"> Median is the middle number, but not the middle of the entire span -- but the middle as in 100 people were reported if we put them in age order, what would the 50th person's age be. It still doesn't quell with the 47% making it to 18+ though, because then you'd need 49 people of the 100 being over 37 in some way or another and that doesn't make sense in relation to the 18+ thing.
<br />
<br />So I'm with you -- I don't get it.
<br />

 

[crickit715]

glad im not the only one!! i wonder if there is someone or somewhere we can contact to find out where these numbers are coming from?? not that im "obsessing" on the numbers, but i also dont want to be told things that are "guesstimates" and conjecture just to "make the cff organization look better"...(does that make sense?). ive always thought that the 37 number seemed awful high in comparison to most real life stories that we see on this site and elsewhere, but that is the number we always hear!!.... then after reading what abc reported and noting such a big difference it is making me question why a "median 37" is even used in reporting by the cff.org. maybe im just making a big deal about nothing, but i feel very caught off guard by these new statistics!!

 

[crickit715]

glad im not the only one!! i wonder if there is someone or somewhere we can contact to find out where these numbers are coming from?? not that im "obsessing" on the numbers, but i also dont want to be told things that are "guesstimates" and conjecture just to "make the cff organization look better"...(does that make sense?). ive always thought that the 37 number seemed awful high in comparison to most real life stories that we see on this site and elsewhere, but that is the number we always hear!!.... then after reading what abc reported and noting such a big difference it is making me question why a "median 37" is even used in reporting by the cff.org. maybe im just making a big deal about nothing, but i feel very caught off guard by these new statistics!!