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Fascinating back story on vertexs step into cff
- Thread starter Aboveallislove
- Start date
D
Dank
Guest
A friend linked me this the other day. Another point of view: (and a slightly depressing one)
http://www.truth-out.org/opinion/it...dation-rakes-in-cystic-fibrosis-drug-revenues
http://www.truth-out.org/opinion/it...dation-rakes-in-cystic-fibrosis-drug-revenues
Aboveallislove
Super Moderator
A friend linked me this the other day. Another point of view: (and a slightly depressing one)
http://www.truth-out.org/opinion/it...dation-rakes-in-cystic-fibrosis-drug-revenues
Wow. Thanks for posting. It is always interesting to see what folks are saying, but holy cow, what an unfair hit piece! I have no issue with criticizing the CFF where deserved, and jricci pointed out a really valid concern re sharing off label info which sounds like it is being corrected. And I know others have as well, but even leaving aside the many the opinions there are several FACTUAL misstatements.
1) "The Cystic Fibrosis Foundation has been zealously pushing the medication because of the $3.3 billion windfall it stands to gain from it." Factually, I don't think there is any evidence the CFF is "zealously pushing the medication." But even if that were true, there is NO evidence it is "because" of a windfall, as oppose to the benefits it provides patients. BUT even if that were an opinion....it is completely factually false to say it is because it "stands to gain" a $3.3 windfall from pushing it because the CFF sold the rights in November of 2014 and had the $3.3 million in hand way before Orkambi was approved in July of 2015. So factually it is just plain wrong to say that the CFF has a $3.3 financial interest to gain from pushing the medication. After selling its rights, the CFF has absolutely no direct financial benefit in folks taking the drugs or not. The author himself links to articles with the dates and the $3.3 payout preceding approval.
2) He states that the CFF "has no obligation to spend it in the interest of the patients, and has indicated that none of it will be used to help patients pay for the drug. Rather than push for costs of medications to be lower, the foundation has an incentive to keep costs high to increase its return on investments." Leaving aside the opinion points, it is factually wrong to say the CFF has "no obligation to spend it in the interest of the patients." The CFF is governed by bylaws and other legal documents that mandate money be spent in the interest of patients.
3) "The only drug in development that has shown effectiveness in addressing the underlying genetic defect of the disease was not supported by the Cystic Fibrosis Foundation, but the comparatively tiny UK Cystic Fibrosis Gene Therapy Consortium." Again, that is false. Kalydeco, Orkambi, and the other modulators being developed by other companies do address the underlying defect. It isn't gene therapy, but it is addressing the underlying genetic defect.
I have now read both articles. And there you succinctly have the debate. So I will chime in my two cents. I know of no other rare disease of such seriousness and complexity that has enjoyed as much publicity, investigation and advances as cystic fibrosis in such a short time period. Our economic system relies on profits to motivate expansive research. So many articles are published by non-profit minded educational institutions doing research on this or that, but the results are rarely incorporated into real solutions. Our educational and research institutions are to a large degree overburdened and underfunded. In order for progress to occur, there has to be money in it. Profit Potential. Justification for investors. It's the economic model. Capitalism. And it works. It has spawned more research, more new drugs, more advances in every area of life, not just medicine, than any other economic model. From Apple to Vertex and everything in between. Money in the form of profits. Show me any other country that has been the initiator of so many world changing advances in so many fields. From electricity, to automobiles, to cellphones, to medical treatments, to even incredibly creative toys! Capitalism gets results. I won't apologize for it to anyone.
So generally the first inquiry is whether there is any money in it. Rare diseases afflict relatively small numbers of people. There's no money in that. Unless someone steps forward - such as the parents who originally formed the Cystic Fibrosis Foundation for their ignored children - who said, here - I'll pay you to find a cure and you can keep the majority of the profits. We just want some of the money back so we can invest in more research. Because we're determined to find not only better treatments, but a cure. That is the pioneering of the CF Foundation. It's called Venture Philanthropy. A new approach with respected and admired results. Ask anyone on Kalydeco or Orkambi, or Hypertonic Saline, or Pulmozyme. I want the CF Foundation to keep the money. I want them to make as much money as they possibly can. They are a non-profit. They seek out, initiate, motivate and outright "pay" for the research and have been doing it when nobody else would. Thank you.
No entity, no person, is without faults, or without room for improvement. That's okay too.
None of this stops other entities from fueling their own research in any way they possibly can.
Finally, to me, concentrating treatment and knowledge in specialized centers across the country is not arrogance, it's brilliance. All I have to do is go to our pediatrician or read the stories of those who seek treatment at another level, to know that the knowledge and experience I need is at a CFF approved Center. It's not perfect. And some centers are clearly better than others. And I am regularly chastising, criticizing and outright ticked at our own Center on a regular basis. I hope it helps them improve. But the odds are with you when you walk in the door that you're going to get more info and better treatment than at your neighborhood doc or hospital. Whenever anyone in my family has a new illness, especially a serious one, we always seek out recommendations, references, ratings and any other information we can find that tells us who and where they have the most and best experience with that illness. If I need a doc to remove a brain tumor, I look for the doc that does it all the time, and has the best track record. There was a time when there was no idea who that might be for cystic fibrosis. We have a much better shot now, by simply going to a CF Center. Looks like it's a system that's working to me, at least better than the alternatives.
I applaud those who are looking for a better model. I hope you find one. Please let me know when you do. I will want to be a part of that too. My only goal is to give my baby the best, the longest, the highest quality of life. And I'm not ready to jump down the throat of those who have been the only ones to keep him alive thus far.
So generally the first inquiry is whether there is any money in it. Rare diseases afflict relatively small numbers of people. There's no money in that. Unless someone steps forward - such as the parents who originally formed the Cystic Fibrosis Foundation for their ignored children - who said, here - I'll pay you to find a cure and you can keep the majority of the profits. We just want some of the money back so we can invest in more research. Because we're determined to find not only better treatments, but a cure. That is the pioneering of the CF Foundation. It's called Venture Philanthropy. A new approach with respected and admired results. Ask anyone on Kalydeco or Orkambi, or Hypertonic Saline, or Pulmozyme. I want the CF Foundation to keep the money. I want them to make as much money as they possibly can. They are a non-profit. They seek out, initiate, motivate and outright "pay" for the research and have been doing it when nobody else would. Thank you.
No entity, no person, is without faults, or without room for improvement. That's okay too.
None of this stops other entities from fueling their own research in any way they possibly can.
Finally, to me, concentrating treatment and knowledge in specialized centers across the country is not arrogance, it's brilliance. All I have to do is go to our pediatrician or read the stories of those who seek treatment at another level, to know that the knowledge and experience I need is at a CFF approved Center. It's not perfect. And some centers are clearly better than others. And I am regularly chastising, criticizing and outright ticked at our own Center on a regular basis. I hope it helps them improve. But the odds are with you when you walk in the door that you're going to get more info and better treatment than at your neighborhood doc or hospital. Whenever anyone in my family has a new illness, especially a serious one, we always seek out recommendations, references, ratings and any other information we can find that tells us who and where they have the most and best experience with that illness. If I need a doc to remove a brain tumor, I look for the doc that does it all the time, and has the best track record. There was a time when there was no idea who that might be for cystic fibrosis. We have a much better shot now, by simply going to a CF Center. Looks like it's a system that's working to me, at least better than the alternatives.
I applaud those who are looking for a better model. I hope you find one. Please let me know when you do. I will want to be a part of that too. My only goal is to give my baby the best, the longest, the highest quality of life. And I'm not ready to jump down the throat of those who have been the only ones to keep him alive thus far.
ugh! "relabeling ibuprofen, salt water and Viagra..."
And I guess IMO, so many times I see people who are looking for a direct benefit in terms of assistance -- we have a local cf group that raises money for travel expenses to CF educational events, scholarships and to help with some medications and equipment. Time and time again they talk about how they'd rather the money earned stay 'local', go toward helping the people in our state. Personally, I'd rather look at the big picture. Money for research/reinvestment of money from companies like vertex to go toward longevity, quality of life and hopefully a cure...
Agree with Aboveall & Gamma.
And I guess IMO, so many times I see people who are looking for a direct benefit in terms of assistance -- we have a local cf group that raises money for travel expenses to CF educational events, scholarships and to help with some medications and equipment. Time and time again they talk about how they'd rather the money earned stay 'local', go toward helping the people in our state. Personally, I'd rather look at the big picture. Money for research/reinvestment of money from companies like vertex to go toward longevity, quality of life and hopefully a cure...
Agree with Aboveall & Gamma.
Aboveallislove
Super Moderator
Gamaw and Ratatosk: Yes, yes, yes...so much to say in response, I'd have a treatise if I hadn't focused on the purely factual misstatements! What I found interesting re the article I posted was that I had no idea that the original company and then Vertex "didn't need to money" and "weren't focused on CF." And frankly used the money from the CFF as an excuse to say to their investors "don't worry, we aren't wasting your money researching CF." I had always been of the impression that it was Beale's great insight and push that made it a reality. I had no idea that that was only half of the story (I still think that re Beale). But it sounds like it is was a miracle that Boger was in charge and agreed to research it. And now that it is a success, others are willing to as well.
And to top it off. . . . it appears to me that there has been an absolute explosion of research using the Vertex model and their research as well as new ideas and insights to treat and cure CF spawned by the attention and methods used, just the encouragement that treatment and cures are possible. Really. Can we chastise such progress towards saving out lives? Why?
saintoffeon
New member
I think, at least in part, some of this stems from the hurt and desparation some feel. If things aren't swinging your way, and you know you're busting your arse, it may be a human nature thing to pick out a boogeyman.
Like others have said or intimated, nobody's perfect and certainly not every person or corporation is completely without self-interest. But if you're going to fight, fight fair, and if you're going to argue, argue with things you can prove and stand behind—or you may learn you don't actually have an argument at all.
I think of the Vertex pills as auctioned-off artwork. Is the Mona Lisa worth a hundred million dollars? Not in material costs, no, just like it's probably not super expensive to crap out an Orkambi pill. I'm sure the ingredients and the precision tools, if they exist, aren't cheap, but for 250K, do I think 249K is production? Of course not.
But there's assigned value to be considered. They spent a ton of money, and SOMEONE is footing the bill. I haven't paid a dime for Orkambi yet in nearly three months, and next year it'll be anywhere from 500-6000 dollars to have it again for the year. That's way, way better than a quarter-million dollars. My poor insurance is taking it up the butt to deal with that, and as long as they will, I imagine Vertex will keep charging it. Who wouldn't turn down a raise for doing the same job? Many of those being turned down are from lack of prescription or incorrect genotype. Medicaid seems to thinking screening is the answer, setting standards for FEV to limit how much they have to pay out, which is directly related to the cost...other than that, I don't see a lot of people directly feeling the pinch at anywhere close to that magnitude.
Back to my original point, though, we're all sick and scared and nothing flies quicker than a rumor. I've seen total strangers argue on Reddit over who the better/more effective charity is, with people saying the CF Foundation pockets all of its donations, when the paperwork it files with the government is readily available online and you see its overhead is closer to 7-13% depending on the year, with almost all of the rest benefiting the patient population somehow.
But there's also a climate of bitterness in tow. And of emotional charge. For some people, they couldn't get Orkambi. For others, they felt bad early on and stopped, or stayed on a really long time and didn't feel much different. And they lost it. Did you see the meme image on Twitter and Facebook with the drug box in the background and giant letters saying something like, "It's not a cure....you're still going to die!" Unnecessary, and unfairly loaded. Unless the person is twelve years old, that's coming from someone burnt and angry. And that's how slighting gets propagated.
Like others have said or intimated, nobody's perfect and certainly not every person or corporation is completely without self-interest. But if you're going to fight, fight fair, and if you're going to argue, argue with things you can prove and stand behind—or you may learn you don't actually have an argument at all.
I think of the Vertex pills as auctioned-off artwork. Is the Mona Lisa worth a hundred million dollars? Not in material costs, no, just like it's probably not super expensive to crap out an Orkambi pill. I'm sure the ingredients and the precision tools, if they exist, aren't cheap, but for 250K, do I think 249K is production? Of course not.
But there's assigned value to be considered. They spent a ton of money, and SOMEONE is footing the bill. I haven't paid a dime for Orkambi yet in nearly three months, and next year it'll be anywhere from 500-6000 dollars to have it again for the year. That's way, way better than a quarter-million dollars. My poor insurance is taking it up the butt to deal with that, and as long as they will, I imagine Vertex will keep charging it. Who wouldn't turn down a raise for doing the same job? Many of those being turned down are from lack of prescription or incorrect genotype. Medicaid seems to thinking screening is the answer, setting standards for FEV to limit how much they have to pay out, which is directly related to the cost...other than that, I don't see a lot of people directly feeling the pinch at anywhere close to that magnitude.
Back to my original point, though, we're all sick and scared and nothing flies quicker than a rumor. I've seen total strangers argue on Reddit over who the better/more effective charity is, with people saying the CF Foundation pockets all of its donations, when the paperwork it files with the government is readily available online and you see its overhead is closer to 7-13% depending on the year, with almost all of the rest benefiting the patient population somehow.
But there's also a climate of bitterness in tow. And of emotional charge. For some people, they couldn't get Orkambi. For others, they felt bad early on and stopped, or stayed on a really long time and didn't feel much different. And they lost it. Did you see the meme image on Twitter and Facebook with the drug box in the background and giant letters saying something like, "It's not a cure....you're still going to die!" Unnecessary, and unfairly loaded. Unless the person is twelve years old, that's coming from someone burnt and angry. And that's how slighting gets propagated.