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

L

LouLou

New member
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.
 
L

LouLou

New member
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...
<br />Q. Where does the CFPAF get funding? Who donates to the CFPAF?
<br />
<br />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.
<br />
<br />
 
J

just1more

New member
Just to clarify, insurance can and will pay for it IF it works. Though it may take some time for them to agree to pay.

I have a son w/ Hemophilia and his clotting factor (IV infusions 2x/wk) currently runs nearly $25,000 a month. Both BCBS & medicaid have both paid for it at different points. They ain't happy about it but they pay it.
 
J

just1more

New member
Just to clarify, insurance can and will pay for it IF it works. Though it may take some time for them to agree to pay.

I have a son w/ Hemophilia and his clotting factor (IV infusions 2x/wk) currently runs nearly $25,000 a month. Both BCBS & medicaid have both paid for it at different points. They ain't happy about it but they pay it.
 
J

just1more

New member
Just to clarify, insurance can and will pay for it IF it works. Though it may take some time for them to agree to pay.
<br />
<br />I have a son w/ Hemophilia and his clotting factor (IV infusions 2x/wk) currently runs nearly $25,000 a month. Both BCBS & medicaid have both paid for it at different points. They ain't happy about it but they pay it.
 
M

mneville

Guest
Cost is always a factor with CF. We have great insurance for our son but he is costing the insurance company a small fortune all the time doing IVs and sinus surgeries every 2-3 months with all his daily meds. If oral Zyvox is over $1,800 for two weeks (we pay upfront so I know these things) and his ZenPep for the month is about $3,000, I can only imagine what Vertex will cost! I pay upfront for all his meeds with 90% back a few weeks later. We get no assistance whatsoever with co-pays and deductibles. CFF needs to come up with a way to make these meds affordable.
 
M

mneville

Guest
Cost is always a factor with CF. We have great insurance for our son but he is costing the insurance company a small fortune all the time doing IVs and sinus surgeries every 2-3 months with all his daily meds. If oral Zyvox is over $1,800 for two weeks (we pay upfront so I know these things) and his ZenPep for the month is about $3,000, I can only imagine what Vertex will cost! I pay upfront for all his meeds with 90% back a few weeks later. We get no assistance whatsoever with co-pays and deductibles. CFF needs to come up with a way to make these meds affordable.
 
M

mneville

Guest
Cost is always a factor with CF. We have great insurance for our son but he is costing the insurance company a small fortune all the time doing IVs and sinus surgeries every 2-3 months with all his daily meds. If oral Zyvox is over $1,800 for two weeks (we pay upfront so I know these things) and his ZenPep for the month is about $3,000, I can only imagine what Vertex will cost! I pay upfront for all his meeds with 90% back a few weeks later. We get no assistance whatsoever with co-pays and deductibles. CFF needs to come up with a way to make these meds affordable.
 
G

Giggles

New member
Yeah I figured as much there was some scientific reason they would pick the mutation they did instead of the Df508, I still don't like it...<br>
 
G

Giggles

New member
Yeah I figured as much there was some scientific reason they would pick the mutation they did instead of the Df508, I still don't like it...<br>
 
G

Giggles

New member
Yeah I figured as much there was some scientific reason they would pick the mutation they did instead of the Df508, I still don't like it...<br>
 
K

kronn

New member
The price of drugs is a problem for everyone. I attended the CFF volunteer leadership conference in the Spring, not long after the initial VX-770 announcement from Vertex. Although VX-770 impacts a small percentage of the CF population, it looks promising that it will help a much larger percentage. The Vertex VX-770 technology is needed for the Df508 drug to work properly. My simple understanding is that the VX-770 drug allows the opens the door at the top of the cell. The follow-up drug(s) allow the chlorides to get to the top of the cell and then VX-770 gets it out. Even though VX-770 only impacts a small portion of the population, it is critical to combination drugs working.

The venture money for development provided from CFF allowed/encouraged Vertex to take the risk on the drug development. Without CFF's funding the orphan-drug development would not have happened. From a business ROI perspective, there is hope that the same genetic cell technology developed for VX-770 can be used on other CF mutations as well as other genetic diseases, which will provide a gateway to profit for the pharmaceutical company and help lower the drug price.

CFF is not involved in setting the price of the drug; however, they are greatly responsible for getting the drug and the new technology developed. Hopefully the technology developed will have wide application, help a lot of people and help lower the cost of treatment for everyone. Once the drug is developed then a strategy to make it more affordable can come into play.

Congratulations to CFF on getting the drug and pipeline produced. Let's hope it is a huge breakthrough adn then we'll figure out how to pay for it.
 
K

kronn

New member
The price of drugs is a problem for everyone. I attended the CFF volunteer leadership conference in the Spring, not long after the initial VX-770 announcement from Vertex. Although VX-770 impacts a small percentage of the CF population, it looks promising that it will help a much larger percentage. The Vertex VX-770 technology is needed for the Df508 drug to work properly. My simple understanding is that the VX-770 drug allows the opens the door at the top of the cell. The follow-up drug(s) allow the chlorides to get to the top of the cell and then VX-770 gets it out. Even though VX-770 only impacts a small portion of the population, it is critical to combination drugs working.

The venture money for development provided from CFF allowed/encouraged Vertex to take the risk on the drug development. Without CFF's funding the orphan-drug development would not have happened. From a business ROI perspective, there is hope that the same genetic cell technology developed for VX-770 can be used on other CF mutations as well as other genetic diseases, which will provide a gateway to profit for the pharmaceutical company and help lower the drug price.

CFF is not involved in setting the price of the drug; however, they are greatly responsible for getting the drug and the new technology developed. Hopefully the technology developed will have wide application, help a lot of people and help lower the cost of treatment for everyone. Once the drug is developed then a strategy to make it more affordable can come into play.

Congratulations to CFF on getting the drug and pipeline produced. Let's hope it is a huge breakthrough adn then we'll figure out how to pay for it.
 
K

kronn

New member
The price of drugs is a problem for everyone. I attended the CFF volunteer leadership conference in the Spring, not long after the initial VX-770 announcement from Vertex. Although VX-770 impacts a small percentage of the CF population, it looks promising that it will help a much larger percentage. The Vertex VX-770 technology is needed for the Df508 drug to work properly. My simple understanding is that the VX-770 drug allows the opens the door at the top of the cell. The follow-up drug(s) allow the chlorides to get to the top of the cell and then VX-770 gets it out. Even though VX-770 only impacts a small portion of the population, it is critical to combination drugs working.
<br />
<br />The venture money for development provided from CFF allowed/encouraged Vertex to take the risk on the drug development. Without CFF's funding the orphan-drug development would not have happened. From a business ROI perspective, there is hope that the same genetic cell technology developed for VX-770 can be used on other CF mutations as well as other genetic diseases, which will provide a gateway to profit for the pharmaceutical company and help lower the drug price.
<br />
<br />CFF is not involved in setting the price of the drug; however, they are greatly responsible for getting the drug and the new technology developed. Hopefully the technology developed will have wide application, help a lot of people and help lower the cost of treatment for everyone. Once the drug is developed then a strategy to make it more affordable can come into play.
<br />
<br />Congratulations to CFF on getting the drug and pipeline produced. Let's hope it is a huge breakthrough adn then we'll figure out how to pay for it.
<br />
 
K

kronn

New member
The price of drugs is a problem for everyone. I attended the CFF volunteer leadership conference in the Spring, not long after the initial VX-770 announcement from Vertex. Although VX-770 impacts a small percentage of the CF population, it looks promising that it will help a much larger percentage. The Vertex VX-770 technology is needed for the Df508 drug to work properly. My simple understanding is that the VX-770 drug allows the opens the door at the top of the cell. The follow-up drug(s) allow the chlorides to get to the top of the cell and then VX-770 gets it out. Even though VX-770 only impacts a small portion of the population, it is critical to combination drugs working.

The venture money for development provided from CFF allowed/encouraged Vertex to take the risk on the drug development. Without CFF's funding the orphan-drug development would not have happened. From a business ROI perspective, there is hope that the same genetic cell technology developed for VX-770 can be used on other CF mutations as well as other genetic diseases, which will provide a gateway to profit for the pharmaceutical company and help lower the drug price.

CFF is not involved in setting the price of the drug; however, they are greatly responsible for getting the drug and the new technology developed. Hopefully the technology developed will have wide application, help a lot of people and help lower the cost of treatment for everyone. Once the drug is developed then a strategy to make it more affordable can come into play.

Congratulations to CFF on getting the drug and pipeline produced. Let's hope it is a huge breakthrough and then we'll figure out how to pay for it.
 
K

kronn

New member
The price of drugs is a problem for everyone. I attended the CFF volunteer leadership conference in the Spring, not long after the initial VX-770 announcement from Vertex. Although VX-770 impacts a small percentage of the CF population, it looks promising that it will help a much larger percentage. The Vertex VX-770 technology is needed for the Df508 drug to work properly. My simple understanding is that the VX-770 drug allows the opens the door at the top of the cell. The follow-up drug(s) allow the chlorides to get to the top of the cell and then VX-770 gets it out. Even though VX-770 only impacts a small portion of the population, it is critical to combination drugs working.

The venture money for development provided from CFF allowed/encouraged Vertex to take the risk on the drug development. Without CFF's funding the orphan-drug development would not have happened. From a business ROI perspective, there is hope that the same genetic cell technology developed for VX-770 can be used on other CF mutations as well as other genetic diseases, which will provide a gateway to profit for the pharmaceutical company and help lower the drug price.

CFF is not involved in setting the price of the drug; however, they are greatly responsible for getting the drug and the new technology developed. Hopefully the technology developed will have wide application, help a lot of people and help lower the cost of treatment for everyone. Once the drug is developed then a strategy to make it more affordable can come into play.

Congratulations to CFF on getting the drug and pipeline produced. Let's hope it is a huge breakthrough and then we'll figure out how to pay for it.
 
K

kronn

New member
The price of drugs is a problem for everyone. I attended the CFF volunteer leadership conference in the Spring, not long after the initial VX-770 announcement from Vertex. Although VX-770 impacts a small percentage of the CF population, it looks promising that it will help a much larger percentage. The Vertex VX-770 technology is needed for the Df508 drug to work properly. My simple understanding is that the VX-770 drug allows the opens the door at the top of the cell. The follow-up drug(s) allow the chlorides to get to the top of the cell and then VX-770 gets it out. Even though VX-770 only impacts a small portion of the population, it is critical to combination drugs working.
<br />
<br />The venture money for development provided from CFF allowed/encouraged Vertex to take the risk on the drug development. Without CFF's funding the orphan-drug development would not have happened. From a business ROI perspective, there is hope that the same genetic cell technology developed for VX-770 can be used on other CF mutations as well as other genetic diseases, which will provide a gateway to profit for the pharmaceutical company and help lower the drug price.
<br />
<br />CFF is not involved in setting the price of the drug; however, they are greatly responsible for getting the drug and the new technology developed. Hopefully the technology developed will have wide application, help a lot of people and help lower the cost of treatment for everyone. Once the drug is developed then a strategy to make it more affordable can come into play.
<br />
<br />Congratulations to CFF on getting the drug and pipeline produced. Let's hope it is a huge breakthrough and then we'll figure out how to pay for it.
<br />
 
G

Giggles

New member
Yes I am really glad this drug is working was discovered and funded cause it can open the doors for others and help others. CF is an orphan disease and ANY progress and meds is WONDERFUL. I represented CF and an Orphan Drug Conference along with some other orphan diseases and we are lucky since we are an orphan disease to have ANY drugs at all. CF Foundation is a wonderful foundation and from the conference I learned alot of the Orphan diseases out there try to model their "foundation" off the CF Foundation. Any advancements are good ones..... <br>
 
G

Giggles

New member
Yes I am really glad this drug is working was discovered and funded cause it can open the doors for others and help others. CF is an orphan disease and ANY progress and meds is WONDERFUL. I represented CF and an Orphan Drug Conference along with some other orphan diseases and we are lucky since we are an orphan disease to have ANY drugs at all. CF Foundation is a wonderful foundation and from the conference I learned alot of the Orphan diseases out there try to model their "foundation" off the CF Foundation. Any advancements are good ones..... <br>
 
G

Giggles

New member
Yes I am really glad this drug is working was discovered and funded cause it can open the doors for others and help others. CF is an orphan disease and ANY progress and meds is WONDERFUL. I represented CF and an Orphan Drug Conference along with some other orphan diseases and we are lucky since we are an orphan disease to have ANY drugs at all. CF Foundation is a wonderful foundation and from the conference I learned alot of the Orphan diseases out there try to model their "foundation" off the CF Foundation. Any advancements are good ones..... <br>
 
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