The 2013 CFF Patient Registry Reports Just Published

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stephen

Guest
Thanks "ranford".

Surprisingly, I never knew these reports existed.

I just downloaded them. They seem to contain a wealth of information. After going through them, I will take the survey.
I suspect reading them will generate questions on my part, and change some of my answers.
 
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ethan508

New member
There are few things better in life than a good set of graphs and charts (I'm a data hound at heart). Thanks for sharing.
 
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randford

New member
Look at pages 18 and 19 on the Patient Registry Report - 2013. Specifically on page 18, (The Socioeconomic Characteristics of Adults 18 Years and Older with CF in 2013). And keep health insurance coverage in mind.

Only 34.3% of patients are fully employed and 12% is part time. That's 46.3%. Sounds good, right? Keep in mind that part timers most likely have to pay for their own insurance rather than being on employer-based group insurance. There should really be a statistic that indicated the number of CF patients paying for their own insurance.

Then look at the insurance information on page 19. Look at how more patient are going on assistance as they get older. Further, look how many patients are on their parent's insurance. What's happening it that more patients (26 an older) are going on Medicare/Medicaid/PARC assistance once they are off their parent's insurance. So essentially the pressure is on and the economic challenges become far greater, not to mention employment becomes a bigger challenge as patients age. All of the hinges on employment, no doubt. Without it, patients have few options...other than SSDI, if they can get it. To round it out, there is only 17.6% disabled and 8.2% unemployed. It makes you wonder how much greater that 17.6% might be if SSDI requirements were less stringent. And what about that 8.2% unemployed? CFF could offer some resource to help them. They need help most of all.

http://www.cff.org/UploadedFiles/re...nnual_Data_Report_to_the_Center_Directors.pdf
 
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randford

New member
Hey Stephen, I remember you! No doubt you're the oldest CF patient on the forum. I'm so glad you are here and hopefully in relatively good health. You give us hope for a longer life!

Yes, the reports take a year to assemble, hence why we won't see the 2014 data until early 2016.

Randford


stephen said:
Thanks "ranford".

Surprisingly, I never knew these reports existed.

I just downloaded them. They seem to contain a wealth of information. After going through them, I will take the survey.
I suspect reading them will generate questions on my part, and change some of my answers.
Click to expand...
 
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stephen

Guest
rainford,

Printer is older I am, and there may be others too.
(Note: The Age Distribution of the CF Population in 2013 chart on page 17 seems to show a “significant” number of people over the age of 70.)

Insurance coverage is a major problem! As the data shows, insurance can become a tremendous problem as people age. More that 50% of those over 26 require Medicare (and not as a result of retirement) or Medicaid assistance.

As you point out, employment the key to private coverage. I suspect that much of the difference between the percent of patients employed and those with private insurance is due to coverage they obtain through a spouses’’ employment.

I was very fortunate and was always covered through my employer - until retiring at the age of 70. Because of the high medical expenses, I always picked up coverage through my wife’s employer too. Since retiring I have Medicare and am very satisfied with it.

The time lag between collecting the data and releasing the report probably explains why there is not more information on Kalydeco. I would like to see data on patients with mutations other than G 551D who are taking it - especially those taking it “off label”. I know there are quite a few.

This information is included in the very interesting and extensive CF FOUNDATION PATIENT REGISTRY QUESTIONNAIRE that can be found on pages 84 thorough 92 of the report.
 
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randford

New member
Stephen, I'm so glad it all worked out for you! First I hope I live as long as you, second that I come in for a soft landing in the future, just as you.

Yes, it would be great for you to get Kalydeco. Me? Given my rare gene combination, there will be another ice age before I get it.

I see the survey. I must have blacked out from all the graphics and data, before getting to the bottom! ;-) But you're right! It's very interesting. I took the online version. Thanks for point that out!

Randford


stephen said:
rainford,

Printer is older I am, and there may be others too.
(Note: The Age Distribution of the CF Population in 2013 chart on page 17 seems to show a “significant” number of people over the age of 70.)

Insurance coverage is a major problem! As the data shows, insurance can become a tremendous problem as people age. More that 50% of those over 26 require Medicare (and not as a result of retirement) or Medicaid assistance.

As you point out, employment the key to private coverage. I suspect that much of the difference between the percent of patients employed and those with private insurance is due to coverage they obtain through a spouses’’ employment.

I was very fortunate and was always covered through my employer - until retiring at the age of 70. Because of the high medical expenses, I always picked up coverage through my wife’s employer too. Since retiring I have Medicare and am very satisfied with it.

The time lag between collecting the data and releasing the report probably explains why there is not more information on Kalydeco. I would like to see data on patients with mutations other than G 551D who are taking it - especially those taking it “off label”. I know there are quite a few.

This information is included in the very interesting and extensive CF FOUNDATION PATIENT REGISTRY QUESTIONNAIRE that can be found on pages 84 thorough 92 of the report.
Click to expand...
 
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stephen

Guest
Ranford,

I really have been VERY fortunate in many ways, thank G-d. Today, I'm finishing my 11th month on Kalydeco - and it's been a real life changer so far.

Like you and ethan505, I really appreciate the graphs and charts. They make it a lot easier to see trends and make comparisons. (There is even a question about that on the survey.)
 
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randford

New member
Stephen, that's really awesome that you're on Kalydeco! You give us all hope! I'm glad it's a real life changer. You should share your experience if you haven't already. I'm really happy for you. All the best!!

Yes like you and Ethan, I like that data. The difference is that I'm not as informed as perhaps you and Ethan. It's always easy to offer an opinion but better to back it up with data. I just need to get busy and study a bit!

Oh, I gave you a "thumbs up". I hope I did it right. ;-)


stephen said:
Ranford,

I really have been VERY fortunate in many thank G-d. Today, I'm finishing my 11th month on Kalydeco - and it's been a real life changer so far.

Like you and ethan505, I really appreciate the graphs and charts. They make it a lot easier to see trends and make comparisons. (There is even a question about that on the survey.)
Click to expand...
 
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bharison

Member
I am another one of seniors with CF. I am now 68 years old. Was not diagnosed until age 64 after years of lung problems and losing a sister 43 years ago to CF.
I just started Kalydeco for R117H about 10 days ago. Can't tell yet if any change in overall health status, but none of the negative side effects so far.
I too enjoyed reading the CF Patient information.
 
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randford

New member
bharison, I'm so sorry your sister succumb to CF but I'm very glad you've made it this far and are now on Kalydeco. Please let us know how you're doing. You give us hope for sure!

I'm glad you enjoy the CF Patient Information. Many patients and families aren't aware of it but it has a lot of good solid information.



bharison said:
I am another one of seniors with CF. I am now 68 years old. Was not diagnosed until age 64 after years of lung problems and losing a sister 43 years ago to CF.
I just started Kalydeco for R117H about 10 days ago. Can't tell yet if any change in overall health status, but none of the negative side effects so far.
I too enjoyed reading the CF Patient information.
Click to expand...
 
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