possible cure for cf on the horizon?

M

Mommafirst

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JazzysMom</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kswitch</b></i>







what i'm curious about is, should there ever be a cure, whether insurance companies will cover it or not. even more curious, will they cover cf treatments anymore since they will be unnecessary in the wake of this new cure...that will likely be inaccessible to a significant portion of the effected community</end quote></div>



Very good point (as usual <img src="i/expressions/face-icon-small-tongue.gif" border="0">)! What if the "cure" doesnt handle all aspect of all CFers.....then what? Back to the CF care!</end quote></div>

I can't imagine any of the smart "e-patients" on here willingly dropping all their preventative care while they wait to see if the long term effects of a "cure" actually come to pass. I mean, even if there something that works, its not going to be a magic dust that automatically ceases CF symptoms. It would have to be taken daily (hourly, who knows) and since its ALL sooo new, I can't imagine the CF centers telling everyone to ditch the known preventative care in the hopes that this will work forever.
 
M

Mommafirst

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JazzysMom</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kswitch</b></i>







what i'm curious about is, should there ever be a cure, whether insurance companies will cover it or not. even more curious, will they cover cf treatments anymore since they will be unnecessary in the wake of this new cure...that will likely be inaccessible to a significant portion of the effected community</end quote></div>



Very good point (as usual <img src="i/expressions/face-icon-small-tongue.gif" border="0">)! What if the "cure" doesnt handle all aspect of all CFers.....then what? Back to the CF care!</end quote></div>

I can't imagine any of the smart "e-patients" on here willingly dropping all their preventative care while they wait to see if the long term effects of a "cure" actually come to pass. I mean, even if there something that works, its not going to be a magic dust that automatically ceases CF symptoms. It would have to be taken daily (hourly, who knows) and since its ALL sooo new, I can't imagine the CF centers telling everyone to ditch the known preventative care in the hopes that this will work forever.
 
M

Mommafirst

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JazzysMom</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kswitch</b></i>







what i'm curious about is, should there ever be a cure, whether insurance companies will cover it or not. even more curious, will they cover cf treatments anymore since they will be unnecessary in the wake of this new cure...that will likely be inaccessible to a significant portion of the effected community</end quote></div>



Very good point (as usual <img src="i/expressions/face-icon-small-tongue.gif" border="0">)! What if the "cure" doesnt handle all aspect of all CFers.....then what? Back to the CF care!</end quote></div>

I can't imagine any of the smart "e-patients" on here willingly dropping all their preventative care while they wait to see if the long term effects of a "cure" actually come to pass. I mean, even if there something that works, its not going to be a magic dust that automatically ceases CF symptoms. It would have to be taken daily (hourly, who knows) and since its ALL sooo new, I can't imagine the CF centers telling everyone to ditch the known preventative care in the hopes that this will work forever.
 
M

Mommafirst

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JazzysMom</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kswitch</b></i>







what i'm curious about is, should there ever be a cure, whether insurance companies will cover it or not. even more curious, will they cover cf treatments anymore since they will be unnecessary in the wake of this new cure...that will likely be inaccessible to a significant portion of the effected community</end quote>



Very good point (as usual <img src="i/expressions/face-icon-small-tongue.gif" border="0">)! What if the "cure" doesnt handle all aspect of all CFers.....then what? Back to the CF care!</end quote>

I can't imagine any of the smart "e-patients" on here willingly dropping all their preventative care while they wait to see if the long term effects of a "cure" actually come to pass. I mean, even if there something that works, its not going to be a magic dust that automatically ceases CF symptoms. It would have to be taken daily (hourly, who knows) and since its ALL sooo new, I can't imagine the CF centers telling everyone to ditch the known preventative care in the hopes that this will work forever.
 
M

Mommafirst

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JazzysMom</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kswitch</b></i>







what i'm curious about is, should there ever be a cure, whether insurance companies will cover it or not. even more curious, will they cover cf treatments anymore since they will be unnecessary in the wake of this new cure...that will likely be inaccessible to a significant portion of the effected community</end quote>



Very good point (as usual <img src="i/expressions/face-icon-small-tongue.gif" border="0">)! What if the "cure" doesnt handle all aspect of all CFers.....then what? Back to the CF care!</end quote>

I can't imagine any of the smart "e-patients" on here willingly dropping all their preventative care while they wait to see if the long term effects of a "cure" actually come to pass. I mean, even if there something that works, its not going to be a magic dust that automatically ceases CF symptoms. It would have to be taken daily (hourly, who knows) and since its ALL sooo new, I can't imagine the CF centers telling everyone to ditch the known preventative care in the hopes that this will work forever.
 
D

Diane

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Dreamer</b></i>





It's called PTC124 and there have been consistently positive results. This is the website of the company doing the studies for it. If you add yourself to their mailing list, you will get regular updates regarding trial results, etc.



<a target=_blank class=ftalternatingbarlinklarge href="http://www.ptcbio.com/default.aspx
">http://www.ptcbio.com/default.aspx
</a>


I've got my fingers crossed about this one!</end quote></div> Thank you for the correction, i knew as i was typing PT124 something might have been left out. I was sure if there was someone would correct me on it. Thanks again<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
D

Diane

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Dreamer</b></i>





It's called PTC124 and there have been consistently positive results. This is the website of the company doing the studies for it. If you add yourself to their mailing list, you will get regular updates regarding trial results, etc.



<a target=_blank class=ftalternatingbarlinklarge href="http://www.ptcbio.com/default.aspx
">http://www.ptcbio.com/default.aspx
</a>


I've got my fingers crossed about this one!</end quote></div> Thank you for the correction, i knew as i was typing PT124 something might have been left out. I was sure if there was someone would correct me on it. Thanks again<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
D

Diane

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Dreamer</b></i>





It's called PTC124 and there have been consistently positive results. This is the website of the company doing the studies for it. If you add yourself to their mailing list, you will get regular updates regarding trial results, etc.



<a target=_blank class=ftalternatingbarlinklarge href="http://www.ptcbio.com/default.aspx
">http://www.ptcbio.com/default.aspx
</a>


I've got my fingers crossed about this one!</end quote></div> Thank you for the correction, i knew as i was typing PT124 something might have been left out. I was sure if there was someone would correct me on it. Thanks again<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
D

Diane

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Dreamer</b></i>





It's called PTC124 and there have been consistently positive results. This is the website of the company doing the studies for it. If you add yourself to their mailing list, you will get regular updates regarding trial results, etc.



<a target=_blank class=ftalternatingbarlinklarge href="http://www.ptcbio.com/default.aspx
">http://www.ptcbio.com/default.aspx
</a>


I've got my fingers crossed about this one!</end quote> Thank you for the correction, i knew as i was typing PT124 something might have been left out. I was sure if there was someone would correct me on it. Thanks again<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
D

Diane

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Dreamer</b></i>





It's called PTC124 and there have been consistently positive results. This is the website of the company doing the studies for it. If you add yourself to their mailing list, you will get regular updates regarding trial results, etc.



<a target=_blank class=ftalternatingbarlinklarge href="http://www.ptcbio.com/default.aspx
">http://www.ptcbio.com/default.aspx
</a>


I've got my fingers crossed about this one!</end quote> Thank you for the correction, i knew as i was typing PT124 something might have been left out. I was sure if there was someone would correct me on it. Thanks again<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
F

Faust

New member
Thanks for the info. And for those questioning if there will be ethics/morals involved when the profit companies come upon that crossroad, you better bet your ass that they will move towards whatever decision = more $$$, and not care what happens to the people. Those CF's who don't benefit from that new pill? Prepare for a ton of red tape to prove that it doesn't help you, while you fight for the continuance of your regular, but very expensive CF meds.
 
F

Faust

New member
Thanks for the info. And for those questioning if there will be ethics/morals involved when the profit companies come upon that crossroad, you better bet your ass that they will move towards whatever decision = more $$$, and not care what happens to the people. Those CF's who don't benefit from that new pill? Prepare for a ton of red tape to prove that it doesn't help you, while you fight for the continuance of your regular, but very expensive CF meds.
 
F

Faust

New member
Thanks for the info. And for those questioning if there will be ethics/morals involved when the profit companies come upon that crossroad, you better bet your ass that they will move towards whatever decision = more $$$, and not care what happens to the people. Those CF's who don't benefit from that new pill? Prepare for a ton of red tape to prove that it doesn't help you, while you fight for the continuance of your regular, but very expensive CF meds.
 
F

Faust

New member
Thanks for the info. And for those questioning if there will be ethics/morals involved when the profit companies come upon that crossroad, you better bet your ass that they will move towards whatever decision = more $$$, and not care what happens to the people. Those CF's who don't benefit from that new pill? Prepare for a ton of red tape to prove that it doesn't help you, while you fight for the continuance of your regular, but very expensive CF meds.
 
F

Faust

New member
Thanks for the info. And for those questioning if there will be ethics/morals involved when the profit companies come upon that crossroad, you better bet your ass that they will move towards whatever decision = more $$$, and not care what happens to the people. Those CF's who don't benefit from that new pill? Prepare for a ton of red tape to prove that it doesn't help you, while you fight for the continuance of your regular, but very expensive CF meds.
 
D

Diane

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Faust</b></i>

Thanks for the info. And for those questioning if there will be ethics/morals involved when the profit companies come upon that crossroad, you better bet your ass that they will move towards whatever decision = more $$$, and not care what happens to the people. .</end quote></div>

As harsh as it sounds , i feel you are accurate. Someone in the medical field a few years ago told me the reason there wont be any real big advancements towards a cf "medicine that can cure"(and i use that term loosely) is because there isnt a big enough market for it. Cf is still considered a "rare" disease where not enough people have it for the pharmceutical company to make enough profit out of marketing the "medication that can cure"
Do i believe they will market a drug that is used as a maintence therapy that gives a longer , more quality life. Yep i do, because they will make an <u>ongoing</u> <u>bundle</u> from that drug, since we will have to take it for the rest of our lives.
 
D

Diane

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Faust</b></i>

Thanks for the info. And for those questioning if there will be ethics/morals involved when the profit companies come upon that crossroad, you better bet your ass that they will move towards whatever decision = more $$$, and not care what happens to the people. .</end quote></div>

As harsh as it sounds , i feel you are accurate. Someone in the medical field a few years ago told me the reason there wont be any real big advancements towards a cf "medicine that can cure"(and i use that term loosely) is because there isnt a big enough market for it. Cf is still considered a "rare" disease where not enough people have it for the pharmceutical company to make enough profit out of marketing the "medication that can cure"
Do i believe they will market a drug that is used as a maintence therapy that gives a longer , more quality life. Yep i do, because they will make an <u>ongoing</u> <u>bundle</u> from that drug, since we will have to take it for the rest of our lives.
 
D

Diane

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Faust</b></i>

Thanks for the info. And for those questioning if there will be ethics/morals involved when the profit companies come upon that crossroad, you better bet your ass that they will move towards whatever decision = more $$$, and not care what happens to the people. .</end quote></div>

As harsh as it sounds , i feel you are accurate. Someone in the medical field a few years ago told me the reason there wont be any real big advancements towards a cf "medicine that can cure"(and i use that term loosely) is because there isnt a big enough market for it. Cf is still considered a "rare" disease where not enough people have it for the pharmceutical company to make enough profit out of marketing the "medication that can cure"
Do i believe they will market a drug that is used as a maintence therapy that gives a longer , more quality life. Yep i do, because they will make an <u>ongoing</u> <u>bundle</u> from that drug, since we will have to take it for the rest of our lives.
 
D

Diane

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Faust</b></i>

Thanks for the info. And for those questioning if there will be ethics/morals involved when the profit companies come upon that crossroad, you better bet your ass that they will move towards whatever decision = more $$$, and not care what happens to the people. .</end quote>

As harsh as it sounds , i feel you are accurate. Someone in the medical field a few years ago told me the reason there wont be any real big advancements towards a cf "medicine that can cure"(and i use that term loosely) is because there isnt a big enough market for it. Cf is still considered a "rare" disease where not enough people have it for the pharmceutical company to make enough profit out of marketing the "medication that can cure"
Do i believe they will market a drug that is used as a maintence therapy that gives a longer , more quality life. Yep i do, because they will make an <u>ongoing</u> <u>bundle</u> from that drug, since we will have to take it for the rest of our lives.
 
D

Diane

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Faust</b></i>

Thanks for the info. And for those questioning if there will be ethics/morals involved when the profit companies come upon that crossroad, you better bet your ass that they will move towards whatever decision = more $$$, and not care what happens to the people. .</end quote>

As harsh as it sounds , i feel you are accurate. Someone in the medical field a few years ago told me the reason there wont be any real big advancements towards a cf "medicine that can cure"(and i use that term loosely) is because there isnt a big enough market for it. Cf is still considered a "rare" disease where not enough people have it for the pharmceutical company to make enough profit out of marketing the "medication that can cure"
Do i believe they will market a drug that is used as a maintence therapy that gives a longer , more quality life. Yep i do, because they will make an <u>ongoing</u> <u>bundle</u> from that drug, since we will have to take it for the rest of our lives.
 
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