VX-770 to be 250K p/year per patient

[hmw]

I don't spend my time sitting around worrying about this; I am one who advocates for taking care of your health, etc every chance I get here and elsewhere.
<br>
<br>But even you (thinking of Lauren here- whose dh I think works in this field), on threads that discuss drug development tend to mention the extremely high cost of bringing a medication to market and that is a valid point when considering what these meds are going to cost and will be a factor in how affordable they will be. In order to continue the 809 trials and work on 661 or anything else, they need $$$, and that means they won't be able to give 770 away. It's not a matter of sitting around panicking over my daughter's future, but rather a legitimate concern (not really based on this one article, either.)

 

[Giggles]

Yeah if you do not have insurance you are $%^& and even then the copays could be quite high. I think the financial assistance is good for people who need it but there are a TON of people that fall in the middle that don't meet the low requirements for assistance and they have insurance but it still costs an arm and a leg to buy meds. I mean I have had copays in upwards of $250 for 3 month supply. But when you are buying over 5 expensive drugs those copays add up. It is just so hard financially I think unless you are SUPER, SUPER well off. The people who are so called " middle class" and don't qualify for assistance still have troubles paying for their drugs.<br><br>I also never understood why the study never targeted the DF508 people who are the majority of the CF population. Now granted if I was one of the others I would probably not feel this way and I mean no disrespect. But to develop a drug that only targets a small portion of the CF population seems stupid to me......<br><br>I guess we shall see how this all ends up.<br>

 

[Giggles]

Yeah if you do not have insurance you are $%^& and even then the copays could be quite high. I think the financial assistance is good for people who need it but there are a TON of people that fall in the middle that don't meet the low requirements for assistance and they have insurance but it still costs an arm and a leg to buy meds. I mean I have had copays in upwards of $250 for 3 month supply. But when you are buying over 5 expensive drugs those copays add up. It is just so hard financially I think unless you are SUPER, SUPER well off. The people who are so called " middle class" and don't qualify for assistance still have troubles paying for their drugs.<br><br>I also never understood why the study never targeted the DF508 people who are the majority of the CF population. Now granted if I was one of the others I would probably not feel this way and I mean no disrespect. But to develop a drug that only targets a small portion of the CF population seems stupid to me......<br><br>I guess we shall see how this all ends up.<br>

 

[Giggles]

Yeah if you do not have insurance you are $%^& and even then the copays could be quite high. I think the financial assistance is good for people who need it but there are a TON of people that fall in the middle that don't meet the low requirements for assistance and they have insurance but it still costs an arm and a leg to buy meds. I mean I have had copays in upwards of $250 for 3 month supply. But when you are buying over 5 expensive drugs those copays add up. It is just so hard financially I think unless you are SUPER, SUPER well off. The people who are so called " middle class" and don't qualify for assistance still have troubles paying for their drugs.<br><br>I also never understood why the study never targeted the DF508 people who are the majority of the CF population. Now granted if I was one of the others I would probably not feel this way and I mean no disrespect. But to develop a drug that only targets a small portion of the CF population seems stupid to me......<br><br>I guess we shall see how this all ends up.<br>

 

[LouLou]

Oh Harriett, I wasn't directing this at you...it's more just a general comment. I loved your figure about drug development costs by the way. News these days is so interested in fear factor and I do feel this article is largely just another fear story. Any chance, you'll be in Hartford today? I'm there for a noon appt.

Tanya, The CFF does already have patient assistance programs.

 

[LouLou]

Oh Harriett, I wasn't directing this at you...it's more just a general comment. I loved your figure about drug development costs by the way. News these days is so interested in fear factor and I do feel this article is largely just another fear story. Any chance, you'll be in Hartford today? I'm there for a noon appt.

Tanya, The CFF does already have patient assistance programs.

 

[LouLou]

Oh Harriett, I wasn't directing this at you...it's more just a general comment. I loved your figure about drug development costs by the way. News these days is so interested in fear factor and I do feel this article is largely just another fear story. Any chance, you'll be in Hartford today? I'm there for a noon appt.
<br />
<br />Tanya, The CFF does already have patient assistance programs.

 

[hmw]

No, not today Lauren~ but we have a lot of appts in coming few months; one for me and one for my oldest in Sept and nearly every Wed the next few months for Emily. I hope your clinic goes well today! If you see Sarah tell her hello for me. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[hmw]

No, not today Lauren~ but we have a lot of appts in coming few months; one for me and one for my oldest in Sept and nearly every Wed the next few months for Emily. I hope your clinic goes well today! If you see Sarah tell her hello for me. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[hmw]

No, not today Lauren~ but we have a lot of appts in coming few months; one for me and one for my oldest in Sept and nearly every Wed the next few months for Emily. I hope your clinic goes well today! If you see Sarah tell her hello for me. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Brad]

I read a while back that the new meds were going to be high priced, that pretty much cuts me out..
I am retired on Disability SS and can't afford half of the Meds that are already out..

I think Cf was meant for the Rich ,,,,

 

[Brad]

I read a while back that the new meds were going to be high priced, that pretty much cuts me out..
I am retired on Disability SS and can't afford half of the Meds that are already out..

I think Cf was meant for the Rich ,,,,

 

[Brad]

I read a while back that the new meds were going to be high priced, that pretty much cuts me out..
<br /> I am retired on Disability SS and can't afford half of the Meds that are already out..
<br />
<br /> I think Cf was meant for the Rich ,,,,

 

[TonyaH]

<P>Hey Lauren,</P>
<P>I know there are patient assistance programs in place by pharmaceutical companies, but am not aware of any that the CFF actually funds itself.  I know there is CFPAF, but that is also funded by pharmaceutical companies. The CFF simply takes care of the administration end of things.  </P>
<P> </P>
<P>I guess my point was that I wonder if there will come a time when research and development has done it's job, and the Foundation will continue on with a mission of getting these medications in the hands of patients.  I know there are programs out there already, but they are not  funded by the CFF.  Unless I am missing something..correct me if I'm wrong.  I would like to know! Someday when Andrew is on his own I want to be aware of all the resources available to him!</P>

 

[TonyaH]

<P>Hey Lauren,</P>
<P>I know there are patient assistance programs in place by pharmaceutical companies, but am not aware of any that the CFF actually funds itself. I know there is CFPAF, but that is also funded by pharmaceutical companies. The CFF simply takes care of the administration end of things. </P>
<P></P>
<P>I guess my point was that I wonder if there will come a time when research and development has done it's job, and the Foundation will continue on with a mission of getting these medications in the hands of patients. I know there are programs out there already, but they are not funded by the CFF. Unless I am missing something..correct me if I'm wrong. I would like to know! Someday when Andrew is on his own I want to be aware of all the resources available to him!</P>

 

[TonyaH]

<P>Hey Lauren,</P>
<P>I know there are patient assistance programs in place by pharmaceutical companies, but am not aware of any that the CFF actually funds itself. I know there is CFPAF, but that is also funded by pharmaceutical companies. The CFF simply takes care of the administration end of things. </P>
<P></P>
<P>I guess my point was that I wonder if there will come a time when research and development has done it's job, and the Foundation will continue on with a mission of getting these medications in the hands of patients. I know there are programs out there already, but they are not funded by the CFF. Unless I am missing something..correct me if I'm wrong. I would like to know! Someday when Andrew is on his own I want to be aware of all the resources available to him!<BR></P>

 

[musclemania70]

Jennifer,
the reason why they have targeted only one small portion of the cf population is because of their mutation and the fact that their mutation isn't as complicated to fix as is the delta 508.
delta 508 mutations have more than one problem to correct.
Scientifically, you'd have to research more about the difference between the mutations to understood why they chose the route they took.

 

[musclemania70]

Jennifer,
the reason why they have targeted only one small portion of the cf population is because of their mutation and the fact that their mutation isn't as complicated to fix as is the delta 508.
delta 508 mutations have more than one problem to correct.
Scientifically, you'd have to research more about the difference between the mutations to understood why they chose the route they took.

 

[musclemania70]

Jennifer,
<br />the reason why they have targeted only one small portion of the cf population is because of their mutation and the fact that their mutation isn't as complicated to fix as is the delta 508.
<br />delta 508 mutations have more than one problem to correct.
<br />Scientifically, you'd have to research more about the difference between the mutations to understood why they chose the route they took.

 

[LouLou]

Tonya, You are absolutely right. I thought since it was part of the CFF it used fund raised dollars but they say on their site, just what you said...
Q. Where does the CFPAF get funding? Who donates to the CFPAF?

A. The CFPAF receives funding for patient assistance from various pharmaceutical manufacturers. In addition, the Cystic Fibrosis Foundation supports the CFPAF by contributing administrative support.