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

jamesB · Jul 25, 2011

Just stumbled over this article... <A HREF="http://www.forbes.com/forbes/2011/0808/features-biotech-fred-van-goor-medicines-drug-your-own_2.html">http://www.forbes.com/forbes/2011/0808/features-biotech-fred-van-goor-medicines-drug-your-own_2.html</A> 'Mark Schoenebaum, an analyst at investment advisor ISI Group, expects
that if the combo approach doesn't work, Vertex will price VX-770 at
$250,000 per patient per year and see sales eventually reach $500
million.' I know Pulmozyme and others are expensive but surely this is getting ridiculous. I'm not in the US so I can't comment fully on the system there but with treatments in this price range surely this is just pushing it too far for health insurance providers.

jamesB · Jul 25, 2011

Just stumbled over this article... <A HREF="http://www.forbes.com/forbes/2011/0808/features-biotech-fred-van-goor-medicines-drug-your-own_2.html">http://www.forbes.com/forbes/2011/0808/features-biotech-fred-van-goor-medicines-drug-your-own_2.html</A> 'Mark Schoenebaum, an analyst at investment advisor ISI Group, expects
that if the combo approach doesn't work, Vertex will price VX-770 at
$250,000 per patient per year and see sales eventually reach $500
million.' I know Pulmozyme and others are expensive but surely this is getting ridiculous. I'm not in the US so I can't comment fully on the system there but with treatments in this price range surely this is just pushing it too far for health insurance providers.

jamesB · Jul 25, 2011

Just stumbled over this article... <A HREF="http://www.forbes.com/forbes/2011/0808/features-biotech-fred-van-goor-medicines-drug-your-own_2.html">http://www.forbes.com/forbes/2011/0808/features-biotech-fred-van-goor-medicines-drug-your-own_2.html</A> 'Mark Schoenebaum, an analyst at investment advisor ISI Group, expects
that if the combo approach doesn't work, Vertex will price VX-770 at
$250,000 per patient per year and see sales eventually reach $500
million.' I know Pulmozyme and others are expensive but surely this is getting ridiculous. I'm not in the US so I can't comment fully on the system there but with treatments in this price range surely this is just pushing it too far for health insurance providers.

hmw · Jul 25, 2011

For now, Vertex is making claims that 'everyone who needs the med will get it', but how long can that possibly last? If insurance companies see them nearly giving it away to those without adequate coverage or otherwise have the means to pay for it, they will kick and scream and find a way to stop covering it themselves.
 
 I understand they need to recoup the incredible cost of developing new medications like this (it costs an average of $800 million to bring a new drug to market, and many come close and then fail, after much of the money has already been invested~ they can't just pull that kind of cash out of thin air) but for a population in need that is SICK, many of whom are disabled to the point of requiring gov. assistance and/or insurance to survive... it's a burden that is nearly impossible to meet. eta> that is why, from THEIR standpoint, it's so vital for the vertex combo to work. As it is, CF is already an orphan drug- affecting a tiny percentage of the population. Vertex 770 on it's own will only be useful to a very small percentage of those with CF. So there is a LOT of money put into a medication that on it's own, only a very small number of people could use. Even if sales do reach $500 million, that won't recoup the money put into developing these drugs.

hmw · Jul 25, 2011

For now, Vertex is making claims that 'everyone who needs the med will get it', but how long can that possibly last? If insurance companies see them nearly giving it away to those without adequate coverage or otherwise have the means to pay for it, they will kick and scream and find a way to stop covering it themselves.
 
 I understand they need to recoup the incredible cost of developing new medications like this (it costs an average of $800 million to bring a new drug to market, and many come close and then fail, after much of the money has already been invested~ they can't just pull that kind of cash out of thin air) but for a population in need that is SICK, many of whom are disabled to the point of requiring gov. assistance and/or insurance to survive... it's a burden that is nearly impossible to meet. eta> that is why, from THEIR standpoint, it's so vital for the vertex combo to work. As it is, CF is already an orphan drug- affecting a tiny percentage of the population. Vertex 770 on it's own will only be useful to a very small percentage of those with CF. So there is a LOT of money put into a medication that on it's own, only a very small number of people could use. Even if sales do reach $500 million, that won't recoup the money put into developing these drugs.

hmw · Jul 25, 2011

For now, Vertex is making claims that 'everyone who needs the med will get it', but how long can that possibly last? If insurance companies see them nearly giving it away to those without adequate coverage or otherwise have the means to pay for it, they will kick and scream and find a way to stop covering it themselves.
 
 I understand they need to recoup the incredible cost of developing new medications like this (it costs an average of $800 million to bring a new drug to market, and many come close and then fail, after much of the money has already been invested~ they can't just pull that kind of cash out of thin air) but for a population in need that is SICK, many of whom are disabled to the point of requiring gov. assistance and/or insurance to survive... it's a burden that is nearly impossible to meet. eta> that is why, from THEIR standpoint, it's so vital for the vertex combo to work. As it is, CF is already an orphan drug- affecting a tiny percentage of the population. Vertex 770 on it's own will only be useful to a very small percentage of those with CF. So there is a LOT of money put into a medication that on it's own, only a very small number of people could use. Even if sales do reach $500 million, that won't recoup the money put into developing these drugs.

katedids74 · Jul 25, 2011

I am in the VX 770 trial at Hopkins and they doctors meet with the company all the time to figure out how to pay for this! The combo drug is the key and they are going to keep working on that. There are only about a 1,000 people that will benefit from this drug and it has cost millions like Harriett has said. I wish I had the answer as this directly affects me, but I will do everything I can to get this drug!

katedids74 · Jul 25, 2011

I am in the VX 770 trial at Hopkins and they doctors meet with the company all the time to figure out how to pay for this! The combo drug is the key and they are going to keep working on that. There are only about a 1,000 people that will benefit from this drug and it has cost millions like Harriett has said. I wish I had the answer as this directly affects me, but I will do everything I can to get this drug!

katedids74 · Jul 25, 2011

I am in the VX 770 trial at Hopkins and they doctors meet with the company all the time to figure out how to pay for this! The combo drug is the key and they are going to keep working on that. There are only about a 1,000 people that will benefit from this drug and it has cost millions like Harriett has said. I wish I had the answer as this directly affects me, but I will do everything I can to get this drug!

musclemania70 · Jul 25, 2011

'an analyst at investment advisor ISI Group'
do you know what that means? NOTHING. He creates SPECULATION. What does that do? Causes people to panic, to buy or sell a certain stock, and create instability in the marketplace or FEAR.
This person does not work for Vertex or the foundation.

Lets not start jumping to conclusions about what might happen. What would be the point of developing a drug if no one had access to it? Do you think the foundation is going to have a drug out there that works but no one could pay for? Don't we trust that the foundation is working FOR US not AGAINST US??????
I know that when i couldn't afford to get my medicines there were programs by the manufacturers that helped me get the drugs i needed.

There is no point in ruffling our feathers about something we don't know about. We don't even know if the drug is going to be approved yet. Maybe we should just take one step at a time and stop with the dramatization of things we don't know to be true yet.

musclemania70 · Jul 25, 2011

'an analyst at investment advisor ISI Group'
do you know what that means? NOTHING. He creates SPECULATION. What does that do? Causes people to panic, to buy or sell a certain stock, and create instability in the marketplace or FEAR.
This person does not work for Vertex or the foundation.

Lets not start jumping to conclusions about what might happen. What would be the point of developing a drug if no one had access to it? Do you think the foundation is going to have a drug out there that works but no one could pay for? Don't we trust that the foundation is working FOR US not AGAINST US??????
I know that when i couldn't afford to get my medicines there were programs by the manufacturers that helped me get the drugs i needed.

There is no point in ruffling our feathers about something we don't know about. We don't even know if the drug is going to be approved yet. Maybe we should just take one step at a time and stop with the dramatization of things we don't know to be true yet.

musclemania70 · Jul 25, 2011

'an analyst at investment advisor ISI Group'
 do you know what that means? NOTHING. He creates SPECULATION. What does that do? Causes people to panic, to buy or sell a certain stock, and create instability in the marketplace or FEAR.
 This person does not work for Vertex or the foundation.
 
 Lets not start jumping to conclusions about what might happen. What would be the point of developing a drug if no one had access to it? Do you think the foundation is going to have a drug out there that works but no one could pay for? Don't we trust that the foundation is working FOR US not AGAINST US??????
 I know that when i couldn't afford to get my medicines there were programs by the manufacturers that helped me get the drugs i needed.
 
 There is no point in ruffling our feathers about something we don't know about. We don't even know if the drug is going to be approved yet. Maybe we should just take one step at a time and stop with the dramatization of things we don't know to be true yet.

LouLou · Jul 25, 2011

I agree with muscle. I'm in the VX770 trial since 2008 and I'm not worried about getting this covered...though I have great group insurance and would be willing to pay through the roof with Cobra if necessary to keep it. My advice is take care of your lungs - it will not fix any damage that is done. Don't stress about this or other stuff because that causes illness and illness causes sickness which causes damage. Oh and keep your jobs so you have good insurance. I can't speak to how gov't insurance will cover this drug. If you have DF508 ask your centers and the all the centers you could participate through for clinical trials how you could help. IMHO it is a true blessing how many people have DF508 (as opposed to if we were all spread out over the 1500 mutations more evenly) and that it should be considered low hanging fruit for a pharm to be pursueing development. Push for more options - lets not put all our eggs in one basket! For example ask about V-661 and what about other companies who are coming to the forefront? Try to spend your energy in a productive manner like this instead of worrying.

LouLou · Jul 25, 2011

I agree with muscle. I'm in the VX770 trial since 2008 and I'm not worried about getting this covered...though I have great group insurance and would be willing to pay through the roof with Cobra if necessary to keep it. My advice is take care of your lungs - it will not fix any damage that is done. Don't stress about this or other stuff because that causes illness and illness causes sickness which causes damage. Oh and keep your jobs so you have good insurance. I can't speak to how gov't insurance will cover this drug. If you have DF508 ask your centers and the all the centers you could participate through for clinical trials how you could help. IMHO it is a true blessing how many people have DF508 (as opposed to if we were all spread out over the 1500 mutations more evenly) and that it should be considered low hanging fruit for a pharm to be pursueing development. Push for more options - lets not put all our eggs in one basket! For example ask about V-661 and what about other companies who are coming to the forefront? Try to spend your energy in a productive manner like this instead of worrying.

LouLou · Jul 25, 2011

I agree with muscle. I'm in the VX770 trial since 2008 and I'm not worried about getting this covered...though I have great group insurance and would be willing to pay through the roof with Cobra if necessary to keep it. My advice is take care of your lungs - it will not fix any damage that is done. Don't stress about this or other stuff because that causes illness and illness causes sickness which causes damage. Oh and keep your jobs so you have good insurance. I can't speak to how gov't insurance will cover this drug. If you have DF508 ask your centers and the all the centers you could participate through for clinical trials how you could help. IMHO it is a true blessing how many people have DF508 (as opposed to if we were all spread out over the 1500 mutations more evenly) and that it should be considered low hanging fruit for a pharm to be pursueing development. Push for more options - lets not put all our eggs in one basket! For example ask about V-661 and what about other companies who are coming to the forefront? Try to spend your energy in a productive manner like this instead of worrying.

TonyaH · Jul 25, 2011

I competely agree. Can you imagine the ramifications of a drug like this being available, but unattainable to the small percentage of the population who needs it? Talk about getting an entire 60 minutes episode dedicated to destroying your company! 
 
CF patients work hard to fund the cure for their disease, walking in Great Strides, holding community fundraisers, writing contribution checks to Bethesda every month as if it is just another monthly bill.... It would be interesting to know how much of the VX 770 project the CFF has funded thus far. Does anyone have that info?
 
I also wonder what path the Foundation will take once drugs like VX770 come available and patient prognosis improves. Will the Foundation ever broaden their mission statement to include patient assistance? It seems that if they accomplish their goals of finding a 'cure' for CF symptoms,(Not that I think the CFF will consider the VX drugs a cure on their own and end their research program, but if it ever got to that point...), their will still be need for 1. Assistance to help patients afford said 'cure', and 2. Assistance to help those patients whose lung damage has progressed before VX 770 can help them. Just wondering about the future of CFF....

TonyaH · Jul 25, 2011

I competely agree. Can you imagine the ramifications of a drug like this being available, but unattainable to the small percentage of the population who needs it? Talk about getting an entire 60 minutes episode dedicated to destroying your company! 

CF patients work hard to fund the curefor theirdisease, walking in Great Strides, holding community fundraisers, writing contribution checks to Bethesda every month as if it is just another monthly bill.... It would be interesting to know how much of the VX 770 project the CFFhas funded thus far. Does anyone have that info?

I also wonder what path the Foundation will take once drugs like VX770 come available and patient prognosis improves. Will the Foundation ever broaden their mission statement to include patient assistance? It seems that if they accomplish their goals of finding a 'cure' for CF symptoms,(Not that I think the CFF will consider the VX drugs a cure on their own and endtheir research program, but if it ever got to that point...), their will still be need for 1. Assistance to help patients afford said 'cure', and 2. Assistance to help those patients whose lung damage has progressed before VX 770 can help them. Just wondering about the future of CFF....

TonyaH · Jul 25, 2011

I competely agree. Can you imagine the ramifications of a drug like this being available, but unattainable to the small percentage of the population who needs it? Talk about getting an entire 60 minutes episode dedicated to destroying your company! 

CF patients work hard to fund the curefor theirdisease, walking in Great Strides, holding community fundraisers, writing contribution checks to Bethesda every month as if it is just another monthly bill.... It would be interesting to know how much of the VX 770 project the CFFhas funded thus far. Does anyone have that info?

I also wonder what path the Foundation will take once drugs like VX770 come available and patient prognosis improves. Will the Foundation ever broaden their mission statement to include patient assistance? It seems that if they accomplish their goals of finding a 'cure' for CF symptoms,(Not that I think the CFF will consider the VX drugs a cure on their own and endtheir research program, but if it ever got to that point...), their will still be need for 1. Assistance to help patients afford said 'cure', and 2. Assistance to help those patients whose lung damage has progressed before VX 770 can help them. Just wondering about the future of CFF....

hmw · Jul 25, 2011

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.
 
 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.)

hmw · Jul 25, 2011

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.
 
 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.)

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