Incomudrox
New member
GO RON PAUL!!!!!!!!!!!
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Fantastic and exciting news at the cf conference..
- Thread starter dasjsmum
- Start date
But you know, the thing is that the 770 is the fore runner, it's the door that opens the floodgate...I understand that it can be depressing reading about good news that isnt going to make a difference for you at this time, BUT I really believe that in a couple of years df508 will also be receiving similar results. It has to start somewhere <img src="i/expressions/face-icon-small-smile.gif" border="0">
But you know, the thing is that the 770 is the fore runner, it's the door that opens the floodgate...I understand that it can be depressing reading about good news that isnt going to make a difference for you at this time, BUT I really believe that in a couple of years df508 will also be receiving similar results. It has to start somewhere <img src="i/expressions/face-icon-small-smile.gif" border="0">
But you know, the thing is that the 770 is the fore runner, it's the door that opens the floodgate...I understand that it can be depressing reading about good news that isnt going to make a difference for you at this time, BUT I really believe that in a couple of years df508 will also be receiving similar results. It has to start somewhere <img src="i/expressions/face-icon-small-smile.gif" border="0">
K
Kaethe108
Guest
Concerning approval I am Not sure how it Works, but it may be that approval in Europe does Not mean that drugs will/can be used in every Country.
E.g. our Doctor told us that After a Drug is approved in the US it still Takes many many Years until it gets on the German market. She told us the Same will Be for Kalydeco & Co. :-(
E.g. our Doctor told us that After a Drug is approved in the US it still Takes many many Years until it gets on the German market. She told us the Same will Be for Kalydeco & Co. :-(
K
Kaethe108
Guest
Concerning approval I am Not sure how it Works, but it may be that approval in Europe does Not mean that drugs will/can be used in every Country.
E.g. our Doctor told us that After a Drug is approved in the US it still Takes many many Years until it gets on the German market. She told us the Same will Be for Kalydeco & Co. :-(
E.g. our Doctor told us that After a Drug is approved in the US it still Takes many many Years until it gets on the German market. She told us the Same will Be for Kalydeco & Co. :-(
K
Kaethe108
Guest
Concerning approval I am Not sure how it Works, but it may be that approval in Europe does Not mean that drugs will/can be used in every Country.
<br />E.g. our Doctor told us that After a Drug is approved in the US it still Takes many many Years until it gets on the German market. She told us the Same will Be for Kalydeco & Co. :-(
<br />E.g. our Doctor told us that After a Drug is approved in the US it still Takes many many Years until it gets on the German market. She told us the Same will Be for Kalydeco & Co. :-(
<P><div class="FTQUOTE"><begin quote><i> I am also pissed about the FDA BS In order for a drug to be approved in the US. Europe an Australia already have 3 or 4 of the drugs in phase 2 or 3 already approved and being used to treat cf successfully. q] </P>
<P> </P>
<P>Oh, really? I am in Europe and i did not know that. which ones? As fat as i know we have the same drugs as in the US available.</P>
<P> </P>
<P>Oh, really? I am in Europe and i did not know that. which ones? As fat as i know we have the same drugs as in the US available.</P>
<P><div class="FTQUOTE"><begin quote><i> I am also pissed about the FDA BS In order for a drug to be approved in the US. Europe an Australia already have 3 or 4 of the drugs in phase 2 or 3 already approved and being used to treat cf successfully. q] </P>
<P></P>
<P>Oh, really? I am in Europe and i did not know that. which ones? As fat as i know we have the same drugs as in the US available.</P>
<P></P>
<P>Oh, really? I am in Europe and i did not know that. which ones? As fat as i know we have the same drugs as in the US available.</P>
<P><div class="FTQUOTE"><begin quote><i> I am also pissed about the FDA BS In order for a drug to be approved in the US. Europe an Australia already have 3 or 4 of the drugs in phase 2 or 3 already approved and being used to treat cf successfully. q] </P>
<P></P>
<P>Oh, really? I am in Europe and i did not know that. which ones? As fat as i know we have the same drugs as in the US available.</P>
<P></P>
<P>Oh, really? I am in Europe and i did not know that. which ones? As fat as i know we have the same drugs as in the US available.</P>
Incomudrox
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kristen</b></i>
There are lots of posts about VX-770 because it is exciting. It's not like it's super hard to weed through new posts on here.</end quote></div><br><br><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>BelEAche</b></i>
Thank you for posting Joanna ..<div>
</div><div> Unlike Grumpy (lol) I cant get enough info on Vertex ! I
am hoping & praying that eventually I will read that it is targeting
another mutation, then another & so on.. </div><div>
</div><div> <img src=""> joni</div></end quote></div>
<br><br>I think that if we have one official thread that was PINNED to the first page. With all the facts and answer to common questions in the first post it would be a good help to people. You can't find much on it because its so scattered! If people posted everything in once thread I think it would be much better off. This is the job of the moderators to create such a post and then pin it to the top, maybe call it "VX-770/809 Kalydeco FAQ! - The Official thread!" could provide links to different stories and publications all on one post and then people would comment as appropriate! so **** COUGH COUGH MODS****<br>
There are lots of posts about VX-770 because it is exciting. It's not like it's super hard to weed through new posts on here.</end quote></div><br><br><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>BelEAche</b></i>
Thank you for posting Joanna ..<div>
</div><div> Unlike Grumpy (lol) I cant get enough info on Vertex ! I
am hoping & praying that eventually I will read that it is targeting
another mutation, then another & so on.. </div><div>
</div><div> <img src=""> joni</div></end quote></div>
<br><br>I think that if we have one official thread that was PINNED to the first page. With all the facts and answer to common questions in the first post it would be a good help to people. You can't find much on it because its so scattered! If people posted everything in once thread I think it would be much better off. This is the job of the moderators to create such a post and then pin it to the top, maybe call it "VX-770/809 Kalydeco FAQ! - The Official thread!" could provide links to different stories and publications all on one post and then people would comment as appropriate! so **** COUGH COUGH MODS****<br>
Incomudrox
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kristen</b></i>
There are lots of posts about VX-770 because it is exciting. It's not like it's super hard to weed through new posts on here.</end quote><br><br><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>BelEAche</b></i>
Thank you for posting Joanna ..
Unlike Grumpy (lol) I cant get enough info on Vertex ! I
am hoping & praying that eventually I will read that it is targeting
another mutation, then another & so on..
<img src=""> joni</end quote>
<br><br>I think that if we have one official thread that was PINNED to the first page. With all the facts and answer to common questions in the first post it would be a good help to people. You can't find much on it because its so scattered! If people posted everything in once thread I think it would be much better off. This is the job of the moderators to create such a post and then pin it to the top, maybe call it "VX-770/809 Kalydeco FAQ! - The Official thread!" could provide links to different stories and publications all on one post and then people would comment as appropriate! so **** COUGH COUGH MODS****<br>
There are lots of posts about VX-770 because it is exciting. It's not like it's super hard to weed through new posts on here.</end quote><br><br><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>BelEAche</b></i>
Thank you for posting Joanna ..
Unlike Grumpy (lol) I cant get enough info on Vertex ! I
am hoping & praying that eventually I will read that it is targeting
another mutation, then another & so on..
<img src=""> joni</end quote>
<br><br>I think that if we have one official thread that was PINNED to the first page. With all the facts and answer to common questions in the first post it would be a good help to people. You can't find much on it because its so scattered! If people posted everything in once thread I think it would be much better off. This is the job of the moderators to create such a post and then pin it to the top, maybe call it "VX-770/809 Kalydeco FAQ! - The Official thread!" could provide links to different stories and publications all on one post and then people would comment as appropriate! so **** COUGH COUGH MODS****<br>
Incomudrox
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kristen</b></i>
There are lots of posts about VX-770 because it is exciting. It's not like it's super hard to weed through new posts on here.</end quote><br><br><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>BelEAche</b></i>
Thank you for posting Joanna ..
Unlike Grumpy (lol) I cant get enough info on Vertex ! I
am hoping & praying that eventually I will read that it is targeting
another mutation, then another & so on..
<img src=""> joni</end quote>
<br><br>I think that if we have one official thread that was PINNED to the first page. With all the facts and answer to common questions in the first post it would be a good help to people. You can't find much on it because its so scattered! If people posted everything in once thread I think it would be much better off. This is the job of the moderators to create such a post and then pin it to the top, maybe call it "VX-770/809 Kalydeco FAQ! - The Official thread!" could provide links to different stories and publications all on one post and then people would comment as appropriate! so **** COUGH COUGH MODS****<br>
There are lots of posts about VX-770 because it is exciting. It's not like it's super hard to weed through new posts on here.</end quote><br><br><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>BelEAche</b></i>
Thank you for posting Joanna ..
Unlike Grumpy (lol) I cant get enough info on Vertex ! I
am hoping & praying that eventually I will read that it is targeting
another mutation, then another & so on..
<img src=""> joni</end quote>
<br><br>I think that if we have one official thread that was PINNED to the first page. With all the facts and answer to common questions in the first post it would be a good help to people. You can't find much on it because its so scattered! If people posted everything in once thread I think it would be much better off. This is the job of the moderators to create such a post and then pin it to the top, maybe call it "VX-770/809 Kalydeco FAQ! - The Official thread!" could provide links to different stories and publications all on one post and then people would comment as appropriate! so **** COUGH COUGH MODS****<br>
E
ElenaFalcon
Guest
<P><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kaethe108</b></i> After a Drug is approved in the US it still Takes many many Years until it gets on the German market. She told us the Same will Be for Kalydeco & Co. :-(</end quote></div> </P>
<P> </P>
<P>Same here. Pulmosyme was approved in Russia 10 years after it came to the market in the US. The government has to provide the drug free of charge, that's why it'll take long time before it comes here.</P>
<P> </P>
<P> </P>
<P> </P>
<P>Same here. Pulmosyme was approved in Russia 10 years after it came to the market in the US. The government has to provide the drug free of charge, that's why it'll take long time before it comes here.</P>
<P> </P>
<P> </P>
E
ElenaFalcon
Guest
<P><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kaethe108</b></i> After a Drug is approved in the US it still Takes many many Years until it gets on the German market. She told us the Same will Be for Kalydeco & Co. :-(</end quote> </P>
<P></P>
<P>Same here. Pulmosyme was approved in Russia 10 years after it came to the market in the US. The government has to provide the drug free of charge, that's why it'll take long time before it comes here.</P>
<P></P>
<P></P>
<P></P>
<P>Same here. Pulmosyme was approved in Russia 10 years after it came to the market in the US. The government has to provide the drug free of charge, that's why it'll take long time before it comes here.</P>
<P></P>
<P></P>
E
ElenaFalcon
Guest
<P><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kaethe108</b></i> After a Drug is approved in the US it still Takes many many Years until it gets on the German market. She told us the Same will Be for Kalydeco & Co. :-(</end quote> </P>
<P></P>
<P>Same here. Pulmosyme was approved in Russia 10 years after it came to the market in the US. The government has to provide the drug free of charge, that's why it'll take long time before it comes here.</P>
<P></P>
<P></P>
<P></P>
<P>Same here. Pulmosyme was approved in Russia 10 years after it came to the market in the US. The government has to provide the drug free of charge, that's why it'll take long time before it comes here.</P>
<P></P>
<P></P>
That's a great idea Incomu. Just tp add to the posts regarding drugs in other countries, we're in Australia and have many of the drugs you have in the US. We dont have access to Tobi (that's one I know of for sure).
Getting this drug in Aus is going to be a mission for me, we will have to elicit the (Aus) cf organisation to help lobby the Aus government so we can get it here and also get it on our government scheme (PBS) which makes drugs available for everyone. It will be very sad if we can get the drug here but it's $60K a year or something...there's no way we can afford that.
However, there are several major hospitals here in Aus that have been in the trial so that should help support us getting the drug.
Getting this drug in Aus is going to be a mission for me, we will have to elicit the (Aus) cf organisation to help lobby the Aus government so we can get it here and also get it on our government scheme (PBS) which makes drugs available for everyone. It will be very sad if we can get the drug here but it's $60K a year or something...there's no way we can afford that.
However, there are several major hospitals here in Aus that have been in the trial so that should help support us getting the drug.
That's a great idea Incomu. Just tp add to the posts regarding drugs in other countries, we're in Australia and have many of the drugs you have in the US. We dont have access to Tobi (that's one I know of for sure).
Getting this drug in Aus is going to be a mission for me, we will have to elicit the (Aus) cf organisation to help lobby the Aus government so we can get it here and also get it on our government scheme (PBS) which makes drugs available for everyone. It will be very sad if we can get the drug here but it's $60K a year or something...there's no way we can afford that.
However, there are several major hospitals here in Aus that have been in the trial so that should help support us getting the drug.
Getting this drug in Aus is going to be a mission for me, we will have to elicit the (Aus) cf organisation to help lobby the Aus government so we can get it here and also get it on our government scheme (PBS) which makes drugs available for everyone. It will be very sad if we can get the drug here but it's $60K a year or something...there's no way we can afford that.
However, there are several major hospitals here in Aus that have been in the trial so that should help support us getting the drug.
That's a great idea Incomu. Just tp add to the posts regarding drugs in other countries, we're in Australia and have many of the drugs you have in the US. We dont have access to Tobi (that's one I know of for sure).
<br />
<br />Getting this drug in Aus is going to be a mission for me, we will have to elicit the (Aus) cf organisation to help lobby the Aus government so we can get it here and also get it on our government scheme (PBS) which makes drugs available for everyone. It will be very sad if we can get the drug here but it's $60K a year or something...there's no way we can afford that.
<br />
<br />However, there are several major hospitals here in Aus that have been in the trial so that should help support us getting the drug.
<br />
<br />Getting this drug in Aus is going to be a mission for me, we will have to elicit the (Aus) cf organisation to help lobby the Aus government so we can get it here and also get it on our government scheme (PBS) which makes drugs available for everyone. It will be very sad if we can get the drug here but it's $60K a year or something...there's no way we can afford that.
<br />
<br />However, there are several major hospitals here in Aus that have been in the trial so that should help support us getting the drug.
In reply to Joanna. I am interested in helping you motivate CF australia to Lobby the government to speed approval. I rang them yesterday and I got an uninformed person who knew nothing at all about VX-770. Possibly there are some more informed people in the organisation. If we want to make it available on a wide scale basis we will need to campaign.