ABC NEWS Story I was featured in

[minimedic304]

I dont know how they came up with that number...there is alot of things I would like to challenge...that being one of them...i think the median age would be lower...i hear way to many people dying in the late teens, and 20's ...way few in the 30-40-50 range...or is that because those in the 30-50 range are not as active in social networking as the younger generation, so we just dont know whats happening in that age group...dont really know either way.... i was hoping the story was going to sway more towards Cf patients living longer but paying more for health care...but it didnt happen that way

 

[DjFunkyFife]

think about this: (and if i'm wrong here, someone correct me) in this set of numbers... (1,2,6,6,8) 6 is the MEDIAN, because 6 is in the middle (median=middle, mean=average)... but the numbers above the median are very close to it... the MEAN, tho, is 4.6. I think someone may have gotten 'median' and 'mean' confused... but even if they did use median in the right way, it's still a useless number... 37 may be the median age (the middle) but that doesnt necessarily mean that that upper half of people is very much older... (in that 1,2,6,6,8 example, the half above the median are very close to it, whereas the half below are further away from the median)

Now if they used the wrong term, (median, when they actually calculated and should have used mean) then thats a different story, and that 37 represents the AVERAGE age of all those with CF.

Have i confused everyone? (i didnt mean to be off-topic, i was trying to explain (to myself also) this whole median-mean thing)

I in fact use median sometimes when i really mean 'mean'

 

[DjFunkyFife]

think about this: (and if i'm wrong here, someone correct me) in this set of numbers... (1,2,6,6,8) 6 is the MEDIAN, because 6 is in the middle (median=middle, mean=average)... but the numbers above the median are very close to it... the MEAN, tho, is 4.6. I think someone may have gotten 'median' and 'mean' confused... but even if they did use median in the right way, it's still a useless number... 37 may be the median age (the middle) but that doesnt necessarily mean that that upper half of people is very much older... (in that 1,2,6,6,8 example, the half above the median are very close to it, whereas the half below are further away from the median)

Now if they used the wrong term, (median, when they actually calculated and should have used mean) then thats a different story, and that 37 represents the AVERAGE age of all those with CF.

Have i confused everyone? (i didnt mean to be off-topic, i was trying to explain (to myself also) this whole median-mean thing)

I in fact use median sometimes when i really mean 'mean'

 

[DjFunkyFife]

think about this: (and if i'm wrong here, someone correct me) in this set of numbers... (1,2,6,6,8) 6 is the MEDIAN, because 6 is in the middle (median=middle, mean=average)... but the numbers above the median are very close to it... the MEAN, tho, is 4.6. I think someone may have gotten 'median' and 'mean' confused... but even if they did use median in the right way, it's still a useless number... 37 may be the median age (the middle) but that doesnt necessarily mean that that upper half of people is very much older... (in that 1,2,6,6,8 example, the half above the median are very close to it, whereas the half below are further away from the median)
<br />
<br />Now if they used the wrong term, (median, when they actually calculated and should have used mean) then thats a different story, and that 37 represents the AVERAGE age of all those with CF.
<br />
<br />Have i confused everyone? (i didnt mean to be off-topic, i was trying to explain (to myself also) this whole median-mean thing)
<br />
<br />I in fact use median sometimes when i really mean 'mean'

 

[minimedic304]

i am confused...but i was never good at math.... either way its a low number...until we are cured or until the disease can be controlled in a way that everyone has the opportunity to live a full life (like 70's 80's 90's) then that should be the focus..."the mission" has not been accomplished

 

[minimedic304]

i am confused...but i was never good at math.... either way its a low number...until we are cured or until the disease can be controlled in a way that everyone has the opportunity to live a full life (like 70's 80's 90's) then that should be the focus..."the mission" has not been accomplished

 

[minimedic304]

i am confused...but i was never good at math.... either way its a low number...until we are cured or until the disease can be controlled in a way that everyone has the opportunity to live a full life (like 70's 80's 90's) then that should be the focus..."the mission" has not been accomplished

 

[hmw]

Nice article! <img src="i/expressions/face-icon-small-smile.gif" border="0">

However, the numbers part bothers me a great deal as well, whenever I come across it. I understand the whole thing about average(mean) and median being different, but 18 and 37 are SUCH different numbers that I really want an explanation there. [Another recent article about cf <a target=_blank class=ftalternatingbarlinklarge href="http://www.ctpost.com/news/article/CF-patients-live-longer-some-diagnosed-as-adults-531674.php">here</a> cited Registry data and stated that only 47% of the cf population is older than 18 and that most of the 400ish deaths annually are teenagers & young adults.]

The CF Foundation repeatedly states that babies born today with cf can expect to live into 40's, 50's, etc. Is that what skews their numbers and gives us 37 over 18 as that 'middle' number? Because if only half of the population right now is 18+, I am sorry, but there is no hard data to support the idea that babies will live that long. We want it, hope it, and dream of a cure- but until we see HARD EVIDENCE of the upcoming meds acting like we hope they will LONG TERM, how can anyone bet on that? I think maybe the CFF needs to make clear two sets of numbers: 'This is what we hope to see in coming years based on promising upcoming meds, trends that are being seen [and whatever other factors that go into this stuff]' and then 'the cold hard data, representing the cf we live with right now.' We can't afford to not know the facts as they really are. We can't afford to let a 'projected number' be confused in our mind with reality and be less vigilant with care because of it... I mean, what if those meds that are supposed to be our 'cure' don't work out so well?

 

[hmw]

Nice article! <img src="i/expressions/face-icon-small-smile.gif" border="0">

However, the numbers part bothers me a great deal as well, whenever I come across it. I understand the whole thing about average(mean) and median being different, but 18 and 37 are SUCH different numbers that I really want an explanation there. [Another recent article about cf <a target=_blank class=ftalternatingbarlinklarge href="http://www.ctpost.com/news/article/CF-patients-live-longer-some-diagnosed-as-adults-531674.php">here</a> cited Registry data and stated that only 47% of the cf population is older than 18 and that most of the 400ish deaths annually are teenagers & young adults.]

The CF Foundation repeatedly states that babies born today with cf can expect to live into 40's, 50's, etc. Is that what skews their numbers and gives us 37 over 18 as that 'middle' number? Because if only half of the population right now is 18+, I am sorry, but there is no hard data to support the idea that babies will live that long. We want it, hope it, and dream of a cure- but until we see HARD EVIDENCE of the upcoming meds acting like we hope they will LONG TERM, how can anyone bet on that? I think maybe the CFF needs to make clear two sets of numbers: 'This is what we hope to see in coming years based on promising upcoming meds, trends that are being seen [and whatever other factors that go into this stuff]' and then 'the cold hard data, representing the cf we live with right now.' We can't afford to not know the facts as they really are. We can't afford to let a 'projected number' be confused in our mind with reality and be less vigilant with care because of it... I mean, what if those meds that are supposed to be our 'cure' don't work out so well?

 

[hmw]

Nice article! <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />However, the numbers part bothers me a great deal as well, whenever I come across it. I understand the whole thing about average(mean) and median being different, but 18 and 37 are SUCH different numbers that I really want an explanation there. [Another recent article about cf <a target=_blank class=ftalternatingbarlinklarge href="http://www.ctpost.com/news/article/CF-patients-live-longer-some-diagnosed-as-adults-531674.php">here</a> cited Registry data and stated that only 47% of the cf population is older than 18 and that most of the 400ish deaths annually are teenagers & young adults.]
<br />
<br />The CF Foundation repeatedly states that babies born today with cf can expect to live into 40's, 50's, etc. Is that what skews their numbers and gives us 37 over 18 as that 'middle' number? Because if only half of the population right now is 18+, I am sorry, but there is no hard data to support the idea that babies will live that long. We want it, hope it, and dream of a cure- but until we see HARD EVIDENCE of the upcoming meds acting like we hope they will LONG TERM, how can anyone bet on that? I think maybe the CFF needs to make clear two sets of numbers: 'This is what we hope to see in coming years based on promising upcoming meds, trends that are being seen [and whatever other factors that go into this stuff]' and then 'the cold hard data, representing the cf we live with right now.' We can't afford to not know the facts as they really are. We can't afford to let a 'projected number' be confused in our mind with reality and be less vigilant with care because of it... I mean, what if those meds that are supposed to be our 'cure' don't work out so well?

 

[peter]

Thanks for the article. The video just kept saying "loading" even after I finished the article. (I'll try it later) It is good to have as many news coverages as possible for cf.

Aside form the math mean-median discussion. Am I the only one wondering why "they" are still saying 30,000 USA and 30,000 rest of world numbers?

It seems that has been the number for at least 5 years and surely the total must have bumped up: 1)better diagnostics and earlier treatment; 2)Newborn screening laws and earlier treatment; 3)more proactive treatment compliance with "better" health 4) increased awareness of treatment and co-morbidity "pit falls" (prevention of worsening symptoms) 5)doctors learning (getting first hand education) more from patients/parents now than even 5 years ago resulting in earlier intervention of new illness symptoms.

All resulting in more people with cf being alive today. If the Bell curve is filling up in the younger range (below 37) can't the mean and median skew to the left(younger) because of increased total number of living people with cf?

Does that sound logical? If there is a bolus of below 37 developing, eventually that bolus will move through the curve and skew right (older). Can someone help me out here? There's something wrong with the total remaining constant all these years. right?

 

[peter]

Thanks for the article. The video just kept saying "loading" even after I finished the article. (I'll try it later) It is good to have as many news coverages as possible for cf.

Aside form the math mean-median discussion. Am I the only one wondering why "they" are still saying 30,000 USA and 30,000 rest of world numbers?

It seems that has been the number for at least 5 years and surely the total must have bumped up: 1)better diagnostics and earlier treatment; 2)Newborn screening laws and earlier treatment; 3)more proactive treatment compliance with "better" health 4) increased awareness of treatment and co-morbidity "pit falls" (prevention of worsening symptoms) 5)doctors learning (getting first hand education) more from patients/parents now than even 5 years ago resulting in earlier intervention of new illness symptoms.

All resulting in more people with cf being alive today. If the Bell curve is filling up in the younger range (below 37) can't the mean and median skew to the left(younger) because of increased total number of living people with cf?

Does that sound logical? If there is a bolus of below 37 developing, eventually that bolus will move through the curve and skew right (older). Can someone help me out here? There's something wrong with the total remaining constant all these years. right?

 

[peter]

Thanks for the article. The video just kept saying "loading" even after I finished the article. (I'll try it later) It is good to have as many news coverages as possible for cf.
<br />
<br />Aside form the math mean-median discussion. Am I the only one wondering why "they" are still saying 30,000 USA and 30,000 rest of world numbers?
<br />
<br />It seems that has been the number for at least 5 years and surely the total must have bumped up: 1)better diagnostics and earlier treatment; 2)Newborn screening laws and earlier treatment; 3)more proactive treatment compliance with "better" health 4) increased awareness of treatment and co-morbidity "pit falls" (prevention of worsening symptoms) 5)doctors learning (getting first hand education) more from patients/parents now than even 5 years ago resulting in earlier intervention of new illness symptoms.
<br />
<br />All resulting in more people with cf being alive today. If the Bell curve is filling up in the younger range (below 37) can't the mean and median skew to the left(younger) because of increased total number of living people with cf?
<br />
<br />Does that sound logical? If there is a bolus of below 37 developing, eventually that bolus will move through the curve and skew right (older). Can someone help me out here? There's something wrong with the total remaining constant all these years. right?

 

[JORDYSMOM]

I agree, Peter. There's no way that the total can remain constant.

Also, what about all of the adult diagnosis? Whether it's called "a-typical" or "adult-onset", there are people over 40 being diagnosed. What's that going to do to the median age?

We have so much to discover/learn!

Stacey

 

[JORDYSMOM]

I agree, Peter. There's no way that the total can remain constant.

Also, what about all of the adult diagnosis? Whether it's called "a-typical" or "adult-onset", there are people over 40 being diagnosed. What's that going to do to the median age?

We have so much to discover/learn!

Stacey

 

[JORDYSMOM]

I agree, Peter. There's no way that the total can remain constant.
<br />
<br />Also, what about all of the adult diagnosis? Whether it's called "a-typical" or "adult-onset", there are people over 40 being diagnosed. What's that going to do to the median age?
<br />
<br />We have so much to discover/learn!
<br />
<br />Stacey

 

[hmw]

Re. the constant number of 30,000 people in the US with cf: I agree, that number should be growing if people with the disease are truly living longer, esp when combined with better diagnostics, etc.

Re. those diagnosed later on... I think that absolutely is going to (and likely already has) affected the median age.

Re. the thought of the bell curve as the population ages- I still can't reconcile the ages. One source is telling us based on registry data, less than half of the population is even 18... and then there is what we've all heard that half of those with cf make it to more than twice that age. This isn't a discrepancy of 2 or 5 or even 10 years. Which number is it, ya know??

 

[hmw]

Re. the constant number of 30,000 people in the US with cf: I agree, that number should be growing if people with the disease are truly living longer, esp when combined with better diagnostics, etc.

Re. those diagnosed later on... I think that absolutely is going to (and likely already has) affected the median age.

Re. the thought of the bell curve as the population ages- I still can't reconcile the ages. One source is telling us based on registry data, less than half of the population is even 18... and then there is what we've all heard that half of those with cf make it to more than twice that age. This isn't a discrepancy of 2 or 5 or even 10 years. Which number is it, ya know??

 

[hmw]

Re. the constant number of 30,000 people in the US with cf: I agree, that number should be growing if people with the disease are truly living longer, esp when combined with better diagnostics, etc.
<br />
<br />Re. those diagnosed later on... I think that absolutely is going to (and likely already has) affected the median age.
<br />
<br />Re. the thought of the bell curve as the population ages- I still can't reconcile the ages. One source is telling us based on registry data, less than half of the population is even 18... and then there is what we've all heard that half of those with cf make it to more than twice that age. This isn't a discrepancy of 2 or 5 or even 10 years. Which number is it, ya know??