Anyone in the NYC area interested in (and qualify for) the Vertex 770 Extended Access Program?

J

jfnym

New member
Anyone in the NYC area interested in (and qualify for) the Vertex 770 Extended Access Program?

<p style="margin: 0in 0in 10pt;" class="MsoNormal"><font color="#000000" size="3" face="Calibri">The pediatric and adult CF centers at Cohen's Children's and
Long Island Jewish in New Hyde Park, NY are participating in the Vertex 770
Extended Access Program. To qualify you must be over the age of 6 and have at
least one G551D mutation. The drug will be provided free of charge by Vertex
until it becomes commercially available. For more information contact Li Chen
Wann, NP at 516-465-5419.</font><font color="#000000" size="3" face="Times New Roman">

</font>
 
J

jfnym

New member
Anyone in the NYC area interested in (and qualify for) the Vertex 770 Extended Access Program?

<p style="margin: 0in 0in 10pt;" class="MsoNormal"><font color="#000000" size="3" face="Calibri">The pediatric and adult CF centers at Cohen's Children's and
Long Island Jewish in New Hyde Park, NY are participating in the Vertex 770
Extended Access Program. To qualify you must be over the age of 6 and have at
least one G551D mutation. The drug will be provided free of charge by Vertex
until it becomes commercially available. For more information contact Li Chen
Wann, NP at 516-465-5419.</font><font color="#000000" size="3" face="Times New Roman">

</font>
 
J

jfnym

New member
Anyone in the NYC area interested in (and qualify for) the Vertex 770 Extended Access Program?

<p style="margin: 0in 0in 10pt;" class="MsoNormal"><font color="#000000" size="3" face="Calibri">The pediatric and adult CF centers at Cohen's Children's and
Long Island Jewish in New Hyde Park, NY are participating in the Vertex 770
Extended Access Program. To qualify you must be over the age of 6 and have at
least one G551D mutation. The drug will be provided free of charge by Vertex
until it becomes commercially available. For more information contact Li Chen
Wann, NP at 516-465-5419.</font><font color="#000000" size="3" face="Times New Roman">

</font>
 
I

Incomudrox

New member
Anyone in the NYC area interested in (and qualify for) the Vertex 770 Extended Access Program?

Awesome for people int he NYC area! I could actually drive if I wanted too I can make it to NYC in under 3 hours. I don't know what my genotypes are yet. But if i have on copy of G551D I can get it regardless due to my lung function so are getting genotype testing done soon.
 
I

Incomudrox

New member
Anyone in the NYC area interested in (and qualify for) the Vertex 770 Extended Access Program?

Awesome for people int he NYC area! I could actually drive if I wanted too I can make it to NYC in under 3 hours. I don't know what my genotypes are yet. But if i have on copy of G551D I can get it regardless due to my lung function so are getting genotype testing done soon.
 
I

Incomudrox

New member
Anyone in the NYC area interested in (and qualify for) the Vertex 770 Extended Access Program?

Awesome for people int he NYC area! I could actually drive if I wanted too I can make it to NYC in under 3 hours. I don't know what my genotypes are yet. But if i have on copy of G551D I can get it regardless due to my lung function so are getting genotype testing done soon.
 
S

saveferris2009

New member
Anyone in the NYC area interested in (and qualify for) the Vertex 770 Extended Access Program?

@Incomudrox I'm so shocked that anyone in 2011 with CF wouldn't have a record of their mutations.

Given all of the clinical trials going on based on genotype (VX-770 for G551D, VX-770 + VX-890 for double DF508, Ataluren for nonsense mutations), I think it's criminal for any CF doc not to have their patient tested YEARS ago. I'm sure it's not your fault, but it's just mind blowing to me that a single CFer wouldn't be genotyped by this point.

Nonetheless, Jerry that's awesome news about the extended access program. The more I hear about VX-770, the more excited I am for all of those CFers who have G551D (I do not). So so so amazing!
 
S

saveferris2009

New member
Anyone in the NYC area interested in (and qualify for) the Vertex 770 Extended Access Program?

@Incomudrox I'm so shocked that anyone in 2011 with CF wouldn't have a record of their mutations.

Given all of the clinical trials going on based on genotype (VX-770 for G551D, VX-770 + VX-890 for double DF508, Ataluren for nonsense mutations), I think it's criminal for any CF doc not to have their patient tested YEARS ago. I'm sure it's not your fault, but it's just mind blowing to me that a single CFer wouldn't be genotyped by this point.

Nonetheless, Jerry that's awesome news about the extended access program. The more I hear about VX-770, the more excited I am for all of those CFers who have G551D (I do not). So so so amazing!
 
S

saveferris2009

New member
Anyone in the NYC area interested in (and qualify for) the Vertex 770 Extended Access Program?

@Incomudrox I'm so shocked that anyone in 2011 with CF wouldn't have a record of their mutations.
<br />
<br />Given all of the clinical trials going on based on genotype (VX-770 for G551D, VX-770 + VX-890 for double DF508, Ataluren for nonsense mutations), I think it's criminal for any CF doc not to have their patient tested YEARS ago. I'm sure it's not your fault, but it's just mind blowing to me that a single CFer wouldn't be genotyped by this point.
<br />
<br />Nonetheless, Jerry that's awesome news about the extended access program. The more I hear about VX-770, the more excited I am for all of those CFers who have G551D (I do not). So so so amazing!
 
I

Incomudrox

New member
Anyone in the NYC area interested in (and qualify for) the Vertex 770 Extended Access Program?

I know what you mean, I may have been genotyped by my original clinc, but I have all the records and i can't find it and neither can anyone else. When I was diagnosed I don't think they cared much. If I was its not in any hospital records that I or my doctors have. I'll know next clinic visit. Up until recently it wasn't a need to know thing I guess.
 
I

Incomudrox

New member
Anyone in the NYC area interested in (and qualify for) the Vertex 770 Extended Access Program?

I know what you mean, I may have been genotyped by my original clinc, but I have all the records and i can't find it and neither can anyone else. When I was diagnosed I don't think they cared much. If I was its not in any hospital records that I or my doctors have. I'll know next clinic visit. Up until recently it wasn't a need to know thing I guess.
 
I

Incomudrox

New member
Anyone in the NYC area interested in (and qualify for) the Vertex 770 Extended Access Program?

I know what you mean, I may have been genotyped by my original clinc, but I have all the records and i can't find it and neither can anyone else. When I was diagnosed I don't think they cared much. If I was its not in any hospital records that I or my doctors have. I'll know next clinic visit. Up until recently it wasn't a need to know thing I guess.
 
M

missT

Member
Anyone in the NYC area interested in (and qualify for) the Vertex 770 Extended Access Program?

Ugh! i read another person inquiring about the Vx770 and the other "gating mutations". they have to open up this drug to other classes like G551D. I have R114H and I ask anyone who has info if the Kelydeco (vx770) will work. No definative answers.  I think just from a financial perspective they would open up the drug and try it on other similar mutations. They do need to make a profit on this.
 
M

missT

Member
Anyone in the NYC area interested in (and qualify for) the Vertex 770 Extended Access Program?

Ugh! i read another person inquiring about the Vx770 and the other "gating mutations". they have to open up this drug to other classes like G551D. I have R114H and I ask anyone who has info if the Kelydeco (vx770) will work.No definative answers. I think just from a financial perspective they would open up the drug and try it on other similar mutations. They do need to make a profit on this.
 
M

missT

Member
Anyone in the NYC area interested in (and qualify for) the Vertex 770 Extended Access Program?

<BR>Ugh! i read another person inquiring about the Vx770 and the other "gating mutations". they have to open up this drug to other classes like G551D. I have R114H and I ask anyone who has info if the Kelydeco (vx770) will work.No definative answers. I think just from a financial perspective they would open up the drug and try it on other similar mutations. They do need to make a profit on this.
 
P

Printer

Active member
Anyone in the NYC area interested in (and qualify for) the Vertex 770 Extended Access Program?

Of course they have to make a profit! If I was a stockholder in Vertex, I would ecpect a return on my investment. Having said that, VX770 is only successful because of the physical location of the G551D mutation upon the gene (on top). The work being done on VX866 for D f508 will be that work that will most likely be expandable for other mutations. Its hard but we need to be patient.

We thought we had a cure in 1989 when the CF Gene was discovered.

Bill
 
P

Printer

Active member
Anyone in the NYC area interested in (and qualify for) the Vertex 770 Extended Access Program?

Of course they have to make a profit! If I was a stockholder in Vertex, I would ecpect a return on my investment. Having said that, VX770 is only successful because of the physical location of the G551D mutation upon the gene (on top). The work being done on VX866 for D f508 will be that work that will most likely be expandable for other mutations. Its hard but we need to be patient.

We thought we had a cure in 1989 when the CF Gene was discovered.

Bill
 
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