adequate funding for adequate CCSVI Clinical trials....

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

adequate funding for adequate CCSVI Clinical trials....

Postby codefellow » Thu Feb 24, 2011 8:17 am

....will never come from those who have a vested interest in seeing CCSVI go the way of the unicorn....neurologists, big pharma, MS Society or govts controlled by big pharma or the MS Society do NOT want to upset the status is just too lucrative.

So is there any way to reach out to the one industry that will benefit if treating CCSVI proves to be a viable way to treat MS -- the INSURANCE industry? Should they not be all over this as far as proving it worthwhile, and therefore worth insuring?

I don't have any further ideas right now. Just opening the topic for discussion.
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Postby Cece » Thu Feb 24, 2011 9:25 am

I don't know how it works. Yes, long-term, CCSVI should benefit the insurance companies. Some patients will require repeated venoplasties which can be expensive, but for those who get results after one procedure, and for anyone who does not have the disability they otherwise were's huge. I know the advice is to stay on the DMDs but I got off of mine back in August. (Please do not follow my lead, I have an unusually stable MS.) I know I'm not the only one who got off the DMDs and that is going to save the insurance companies big bucks.

The problem is that it's not yet proven that CCSVI will make things better and cheaper in the long run. Right now there is the upfront cost of venoplasties for 500,000 Americans that we are hoping insurance continues to cover.
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Postby CenterOfGravity » Thu Feb 24, 2011 9:32 am

What about the manufacturers of the balloons that are used? Maybe they don't have enough money to fund this stuff like drug companies.

I was thinking about the MS Society. When I was first diagnosed, it was either right before or right about the time that betaseron became available (1994). Before the advent of these drugs, the MS Society probably funded a wider range of research and had a more open mind to ANYTHING that could help. It seems that what we've seen happen over the past 15 years is the MS Society has become beholden to the drug companies, as they provide a huge source of revenue to them, as the MS patients provide an even bigger source to the drug companies. People and organizations can become very stuck in their ways, especially when there will be ongoing influences to keep things that way. An MS Society that didn't take money from drug companies may have been better suited to be willing to listen and be excited about the CCSVI developments. I know I was disgusted when I got that recent MS magazine that had an article on new ideas and new frontiers, and every single one was about a new drug on the horizon, and not a peep about CCSVI. Why aren't THEY talking about this as a potential breakthrough, talking about the long history of research showing a venous connection to MS? They talk about potential drugs when they are just starting trials, and most of those FAIL (Ha, I now, I participated in one back in the mid-90s). They should be ashamed of not at least truly educating the MS public about what's going on.

Because of this financial relationship, and the resistance of the neurologists in general, it will take some time and overwhelming research to get the MS Society on board (which is the opposite of how they act nowadays at the prospect of a new drug - they start touting drugs before they are even approved!). I'm sure there are open-minded neurologists out there, but they are having to test their limits by questioning what they always believed about MS. Ironically, they accepted the auto-immune THEORY on the basis of circumstantial evidence and no actual proof of a primary auto-immune response, whereas the venous theory, which we know has been around for 100 years, and now can potentially explain things, that they are rejecting.

I think the vascular community and IRs will be running with this, because they are the ones who see and know that they are seeing a true physiological anomaly, and they can now do something about it. I believe the studies by the vascular doctors and IRs will show the story.

How it will all get funded, I don't know. My guess is that once there is more evidence, the NIH will fund more trials and tests. The money needed will be a drop in the bucket compared to the cancer/HIV/etc research they fund. And the MS Society will get on board eventually if their mission is truly about MS and not being a money generator just to keep the organization going. Their first effort at it, with that whopping $2.4 million for 7 studies was a joke, when you look at what doctors like Dake and others are doing.

I think we'll see a bunch of parallels going on - One will be the ongoing thousands of people getting the CCSVI treatment, with pretty high percentages of people improving and also just not getting worse, as the next few years go on, another will be the active research by the doctors who believe in what they are doing because they've seen it in the trenches, and the third will be the drug company funded negative studies that try to plug the flow of real information. At some point these will converge, maybe it'll take 3-5 years, but my brain and my gut tells me that this neurovascular connection for MS will bust open a huge door and will also lead to looking at other diseases and will end up being one of the biggest medical finds of the decade.
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