Vx-770 and Disability Review

[bethylove]

I'm currently on SSDI for my Cystic Fibrosis and it took me over 2 and a half years to get my case into court and be approved. Every 3 years my case will be reviewed to make sure I'm still "disabled" ... well, I'll always have CF and it will always be progressing, so  I was never worried about it. <div><br></div><div>After reading an article about the new Vx-770 drug helping a man lead his life more "normally" (I know normal strikes up debate here but I'm just quoting the article.) I'm worried that if I take this drug and become less sick than I have been, my disability will be denied due to the increase in health. </div><div><br></div><div>I don't know what type of medical regiments change when taking the drug but I already had such a hard time winning my case as is, that I'm worried when it goes up for review and my numbers have (hopefully) gone up they will argue that my condition has improved and that I no longer qualify. </div><div><br></div><div>I really can't afford to lose my benefits.  I don't meet the necessary 'critera' (which is ridiculous since it solely looks at lung function and CF is SOO much more of a whole body disorder than just PFTS) for SSDI to consider me disabled which is why I had to keep appealing the decision and go to court. In court it took the judge 2 minutes to listen to the doctor read some of my files and make her favorable decision. </div><div><br></div><div>Is anyone in the same boat? Think I should be worried? Any advice? </div>

 

[bethylove]

I'm currently on SSDI for my Cystic Fibrosis and it took me over 2 and a half years to get my case into court and be approved. Every 3 years my case will be reviewed to make sure I'm still "disabled" ... well, I'll always have CF and it will always be progressing, so I was never worried about it.<br>After reading an article about the new Vx-770 drug helping a man lead his life more "normally" (I know normal strikes up debate here but I'm just quoting the article.) I'm worried that if I take this drug and become less sick than I have been, my disability will be denied due to the increase in health.<br>I don't know what type of medical regiments change when taking the drug but I already had such a hard time winning my case as is, that I'm worried when it goes up for review and my numbers have (hopefully) gone up they will argue that my condition has improved and that I no longer qualify.<br>I really can't afford to lose my benefits. I don't meet thenecessary'critera' (which isridiculoussince itsolelylooks at lung function and CF is SOO much more of a whole body disorder than just PFTS) for SSDI to consider me disabled which is why I had to keep appealing the decision and go to court. In court it took the judge 2 minutes to listen to the doctor read some of my files and make her favorable decision.<br>Is anyone in the same boat? Think I should be worried? Any advice?

 

[bethylove]

I'm currently on SSDI for my Cystic Fibrosis and it took me over 2 and a half years to get my case into court and be approved. Every 3 years my case will be reviewed to make sure I'm still "disabled" ... well, I'll always have CF and it will always be progressing, so I was never worried about it.<br>After reading an article about the new Vx-770 drug helping a man lead his life more "normally" (I know normal strikes up debate here but I'm just quoting the article.) I'm worried that if I take this drug and become less sick than I have been, my disability will be denied due to the increase in health.<br>I don't know what type of medical regiments change when taking the drug but I already had such a hard time winning my case as is, that I'm worried when it goes up for review and my numbers have (hopefully) gone up they will argue that my condition has improved and that I no longer qualify.<br>I really can't afford to lose my benefits. I don't meet thenecessary'critera' (which isridiculoussince itsolelylooks at lung function and CF is SOO much more of a whole body disorder than just PFTS) for SSDI to consider me disabled which is why I had to keep appealing the decision and go to court. In court it took the judge 2 minutes to listen to the doctor read some of my files and make her favorable decision.<br>Is anyone in the same boat? Think I should be worried? Any advice?

 

[Printer]

I don't know if this answers your question but I'll try.

770 is to CF as Insilin is to Diabetis. (I need a spell checker here). It is not a cure but rather a drug that "improves" your condition.

 

[Printer]

I don't know if this answers your question but I'll try.

770 is to CF as Insilin is to Diabetis. (I need a spell checker here). It is not a cure but rather a drug that "improves" your condition.

 

[Printer]

I don't know if this answers your question but I'll try.
<br />
<br />770 is to CF as Insilin is to Diabetis. (I need a spell checker here). It is not a cure but rather a drug that "improves" your condition.

 

[musclemania70]

I would also it is not a cure. Its something that helps manage the disease better... But how do you know the drug wouldn't improve your quality of life so you could work?? I'd be thrilled to be off SSDI and if I was healthy enough to work!

 

[musclemania70]

I would also it is not a cure. Its something that helps manage the disease better... But how do you know the drug wouldn't improve your quality of life so you could work?? I'd be thrilled to be off SSDI and if I was healthy enough to work!

 

[musclemania70]

I would also it is not a cure. Its something that helps manage the disease better... <BR><BR>But how do you know the drug wouldn't improve your quality of life so you could work?? <BR><BR>I'd be thrilled to be off SSDI and if I was healthy enough to work!

 

[LouLou]

Not sure what your lung function is but adding 10% lung function to your number is really not that much. It's certainly not curative. Remember it's not 10 percentage points. If your FEV1 was 72% a 7.2 increase would represent 10%. Are you really borderline on disability...ie. in the high 70s and not requiring medical interventions (procedures, IVs, etc.) to stay well?

In my case, I am 67% FEV1. I am on SSDI. I have been told by Beth Sufian unless I got so much better that I no longer needed prophylactic inhaled antibiotics, I shouldn't have a probem keeping it. This year is 3 years on SSDI for me so I expect them to check in.

I have been on drug for Vertex 770 for one year as of October. Not only do I still require my maintanence inhaled abx but also I have had 3 needs for IVs in 2011.

I don't think you need to worry about losing your SSDI but you will have lots more energy and be able to enjoy life A LOT more while on Kalydeco.

 

[LouLou]

Not sure what your lung function is but adding 10% lung function to your number is really not that much. It's certainly not curative. Remember it's not 10 percentage points. If your FEV1 was 72% a 7.2 increase would represent 10%. Are you really borderline on disability...ie. in the high 70s and not requiring medical interventions (procedures, IVs, etc.) to stay well?

In my case, I am 67% FEV1. I am on SSDI. I have been told by Beth Sufian unless I got so much better that I no longer needed prophylactic inhaled antibiotics, I shouldn't have a probem keeping it. This year is 3 years on SSDI for me so I expect them to check in.

I have been on drug for Vertex 770 for one year as of October. Not only do I still require my maintanence inhaled abx but also I have had 3 needs for IVs in 2011.

I don't think you need to worry about losing your SSDI but you will have lots more energy and be able to enjoy life A LOT more while on Kalydeco.

 

[LouLou]

Not sure what your lung function is but adding 10% lung function to your number is really not that much. It's certainly not curative. Remember it's not 10 percentage points. If your FEV1 was 72% a 7.2 increase would represent 10%. Are you really borderline on disability...ie. in the high 70s and not requiring medical interventions (procedures, IVs, etc.) to stay well?
<br />
<br />In my case, I am 67% FEV1. I am on SSDI. I have been told by Beth Sufian unless I got so much better that I no longer needed prophylactic inhaled antibiotics, I shouldn't have a probem keeping it. This year is 3 years on SSDI for me so I expect them to check in.
<br />
<br />I have been on drug for Vertex 770 for one year as of October. Not only do I still require my maintanence inhaled abx but also I have had 3 needs for IVs in 2011.
<br />
<br />I don't think you need to worry about losing your SSDI but you will have lots more energy and be able to enjoy life A LOT more while on Kalydeco.

 

[musclemania70]

Lauren said it the best. She has been on the drug so she would know. Its not a cure. It just makes breathing easier. I wouldn't worry about the ssdi.

 

[musclemania70]

Lauren said it the best. She has been on the drug so she would know. Its not a cure. It just makes breathing easier. I wouldn't worry about the ssdi.

 

[musclemania70]

Lauren said it the best. She has been on the drug so she would know. Its not a cure. It just makes breathing easier. I wouldn't worry about the ssdi.

 

[LouLou]

thanks muscle. Also, I fully expect that many of us will "plateau" a bit with our lung function and not see the progressive nature of this disease so dire All great things to look forward to!!!

 

[LouLou]

thanks muscle. Also, I fully expect that many of us will "plateau" a bit with our lung function and not see the progressive nature of this disease so dire All great things to look forward to!!!

 

[LouLou]

thanks muscle. Also, I fully expect that many of us will "plateau" a bit with our lung function and not see the progressive nature of this disease so dire All great things to look forward to!!!

 

[Jeana]

<P>Bethylove,</P>
<P> </P>
<P>What do you think was the holdup on getting your SSDI approved?  I could not afford to be without income for 2.5 years.  </P>

 

[Jeana]

<P>Bethylove,</P>
<P></P>
<P>What do you think was the holdup on getting your SSDI approved? I could not afford to be without income for 2.5 years. </P>