Why can't we just get the procedure? What is the problem?

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

Why can't we just get the procedure? What is the problem?

Postby fogdweller » Sat May 15, 2010 11:52 am

Doctors can do approved surgeries for new purposes, and it gets paid for by insurance companies.
They can prescribe drugs for off label use that has never been subject to a double blind study. And its get paid for by insurance companies.

It would seem that Dr.s could do angioplasty, an accepted procedure, for a new application (to relieve CCSVI) and it should be accepted and covered by insurance. I am not sure why this is giving everone so much trouble.

I guess Dr.s need to have approval of their hospital/cath lab to do that procedure, and if there is a real question whether it is useful for any purpose, they may not allow it. Especially if there is risk as with stents. This I understand.

However, if current imaging thechnology is adequate now to show insufficient blood drainage from the brain cavity (i.e. CCSVI) and angioplasty (i.e. the liberation procedure) works to fix that condition, it makes rather common sense to fix it.

Plus if the procedure is cnosidered medically necessary, the insurance company should pay for it.

I am having trouble seeing what the problem is. Can someone explain this to me? This is a legitimate question, not a rhetorical question. Please, no "evil drug company, uncaring neurology, and duplicitous MS society" rants. I am sure there is a real reason.
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Postby thisisalex » Sat May 15, 2010 12:18 pm

in Hungary the situation is like this: In order to do the angioplasty there must be an ethical permission. An ethical permission must be signed by a lot of doctors, including a neurologist.
do you understand now? :(
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Postby fogdweller » Sat May 15, 2010 12:27 pm

thisisalex wrote:in Hungary the situation is like this: In order to do the angioplasty there must be an ethical permission. An ethical permission must be signed by a lot of doctors, including a neurologist.
do you understand now? :(


That is different in the US, prob. because of personal insurance. Are the procedures covered by public insurance?

In the US, I actually understand the insurance issue a little. Each insurance co decides what they cover for their policy holders, and until they have a reason to extend coverage to a new procedure, will not. The insured will not succeed in getting them to cover a procedure without evidence that it was necessary. In fact they may not cover it even then unless there is a reason, such as enough of their policy holders want it or it saves them money in the long run. Sometimes not even then.
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hunger strike

Postby 1eye » Sat May 15, 2010 8:39 pm

on
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Some ideas

Postby Squeakycat » Sat May 15, 2010 11:09 pm

I don't know the full answer, but I think there are two obvious parts to it.

The discover of CCSVI is disruptive. All the evidence says it is real and the more real it is, the more disruptive it will be of everything people living OFF of MS currently now do. That is not to say 'evil' neuros, 'evil' pharma, but just the fact that it is a disruptive development means that it will be resisted by those with a vested interest in the status quo almost as much as it will be embraced by people for whom the status quo sucks.

Freedman, Kahn et alia may well believe that their resistance to CCSVI is in the interest of people with MS because it challenges everything they know about MS and how to treat it.

I doubt that hospital legal teams have spontaneously decided to shut anyone down. I am sure the neuros and maybe a pharma rep or two have informed the lawyers that disaster is about to befall the facility if this disruptive new procedure isn't halted. FUD is easy.

You can't get your head around the resistance because objectively, it is is a disruption that will make your life better and those fighting it do so because it will make their lives harder in some way, money, prestige, authority, or whatever floats their boats. Maybe it is just a neuro who really likes working with MSers and dreads the thought of having to deal with folks with Alzheimer, Parkinsons and so on.

Logically, treating impaired cerebrospinal blood flow seems like a no-brainer. But evidence-based medicine does require evidence that a procedure is safe and provides a benefit. At this stage we have a lot of anecdotes, but only one published study of the benefits of treatment and that had some limitations in addition to small sample size.

Those are real issues that people whose careers are going to be disrupted will latch onto, even if they sit around writing scripts all day long for untested, off-label use of drugs (or promote them off-label if they work for pharma and the FDA isn't looking). Doing that probably benefits them in various ways. They are trying something to help their patients, even if it is a Hail Mary pass. They don't see the personal benefit from CCSVI, but they do see a lot of disruption. We see exactly the opposite.

Finally, medicine and many other fields are full of examples of extremely promising developments not panning out. I used to work in direct mail and we had some extremely rigorous ways of testing different letters statistically tight. Letter B would far out perform all the other letters, but when we then mailed 15 million of them, it would fall flat. Think of all the promising drugs that never made it beyond phase II. This may well inform a lot of the caring neuros, hospital administrators and others who are simply saying we have to do this right before everyone runs off and spends money on testing and treatment. These folks will come around pretty quickly as the evidence mounts. Others, will probably fight CCSVI to their last breath.

The more disruptive a development, the more it will provoke resistance. Humans like the status quo, unless it isn't working for them, so it seems easy to understand both sides of this equation and there is no need to demonize anyone. We are all doing what comes naturally.

And that could be all wrong until rigorously tested in large, double-blinded, placebo-controlled, multi-site clinical over the next decade or two trials.

:D
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Postby Brainteaser » Sun May 16, 2010 4:10 am

I think fogdweller has a point - Zamboni said in an interview that CCSVI is a recognised medical condition.

Phil
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Re: hunger strike

Postby bretzke » Sun May 16, 2010 5:54 am

1eye wrote:on


On hunger strike now. May 15 2010 9:22 PM


Why are you on a hunger strike?
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Postby ErikaSlovakia » Sun May 16, 2010 5:59 am

Brainteaser wrote:I think fogdweller has a point - Zamboni said in an interview that CCSVI is a recognised medical condition.

Phil

This is what doctors in Slovakia wrote in an medical angio paper, so they do the procedures and they do use stents. They have been doing this in that hospital anyway.
I do not want to say it was all simple and fast but I still think it was relatively soon.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Re: Some ideas

Postby fogdweller » Sun May 16, 2010 3:39 pm

Squeakycat wrote:I


Logically, treating impaired cerebrospinal blood flow seems like a no-brainer. But evidence-based medicine does require evidence that a procedure is safe and provides a benefit. At this stage we have a lot of anecdotes, but only one published study of the benefits of treatment and that had some limitations in addition to small sample size.

:D


I enjoyed your etry alot. I especially like the idea of resistance because this is a disruptive technology. I also agree whole heartedly that evidence based medicine requires proof of saftey and efficacy of a new treatment for a new condition.

That is why treating this as a method of treating MS logically requires scientific proof, and we should not be coy about getting treatment and "pretend" it is for something else to circumvent the requirement. ("Those of us following Dr. Scalfani's thread will recogcnize that.)

HOWEVER, indeadequate blood flow to/from the brain is recognized as a problem. (Stroke for example). Angigiolapsty is a recognized and well catagorized procedure that is safe and effective for what it does. (This includes cerebral angioplasty. All the coil treatment that neurosurgeions are very familiar with is long accepted endovascular surgery.)

Why not relieve inadequate cirrculation to the brain using angioplasty?

It feels like much of our angst is just because someone related this with MS and we haven't proven that connection yet. So what?
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Postby fogdweller » Sun May 16, 2010 3:41 pm

ErikaSlovakia wrote:
Brainteaser wrote:I think fogdweller has a point - Zamboni said in an interview that CCSVI is a recognised medical condition.

Phil

This is what doctors in Slovakia wrote in an medical angio paper, so they do the procedures and they do use stents. They have been doing this in that hospital anyway.
I do not want to say it was all simple and fast but I still think it was relatively soon.
Erika


Exactly my point. Why is this even an issue?
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Postby ErikaSlovakia » Mon May 17, 2010 2:08 am

fogdweller wrote:
ErikaSlovakia wrote:
Brainteaser wrote:I think fogdweller has a point - Zamboni said in an interview that CCSVI is a recognised medical condition.

Phil

This is what doctors in Slovakia wrote in an medical angio paper, so they do the procedures and they do use stents. They have been doing this in that hospital anyway.
I do not want to say it was all simple and fast but I still think it was relatively soon.
Erika


Exactly my point. Why is this even an issue?

Hi fogdweller!
Maybe we have different healthsystem and law in Europe.
In Europe we have Poland, Bulgaria, Slovakia and I think very soon Glasgow doing the procedures. Of course we have sceptical doctors and patients as well.
I have been in contact with many patients and doctors in Slovakia since August 2009. This is a very small country.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Neuros challenged CCSVI

Postby MarkW » Mon May 17, 2010 3:51 am

Looking at the situation in the UK.
The neuros challenged CCSVI de-stenosis as being no benefit for pwMS. As neuros are considered to be the experts on MS this blocked all possibilities under our public health system (NHS) which will take many years to address.
Private medicine is allowed to offer safe treatments in the UK. This is why EHC in Glasgow, Scotland, UK is allowed to offer its services. However EHC require lots of insurance and will only perform safer Interventional Venoplasty. So do not expect this to be a quick route or cheap (days between diagnosis and de-stenosis, plus costing over 5000 gbp).
As neuros have challenged CCSVI it has slowed down progress in the UK. The big bad pharma conspiracy theory shows a lack of knowledge of big pharma. I doubt that most pharma cos have even heard of CCSVI at a senior level. Speed of reaction is not a feature of big pharma !!
Please read Sweakycat for his view on USA situation. We may speak a similar language but healthcare and law are very different.

Kind regards,
Mark
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby AMcG » Mon May 17, 2010 6:14 am

Pharmacy Conspiracy

I have to disagree with your comments about Pharmacy Companies. Like any big successful business I am sure they monitor their markets and their competitors very closely. They are also well aware of all the levers that exist for controlling/influencing public and expert opinion and have already positioned themselves to take maximum advantage.

They are also continually scanning the literature for those reasons and for potential avenues of development. If they have a big MS drug, they will have read and evaluated any report mentioning MS. How could they not?

Unlike the NMSS they will have been aware of CCSVI since 2006 and will have had an anti-CCSVI strategy in place since then.

Unfortunately this is nothing to do with conspiracies. It is simply effective business practice.

My real point is that we are not yet out of the woods in terms of CCSVI acceptance. I am beginning to believe that it will not be stopped in Eastern Europe and Kuwait. I am also very pleased with what is going on in Canada. But in the UK it is not even on the radar. I believe it is quite possible that it may yet be held up for another ten years. Every year is big money to the pharmacy companies.

In my view the global aims of the pharmacy companies are and have always been, in this order:

1. Protect profits.
2. Protect their reputation.
3. Protect patients.
Last edited by AMcG on Mon May 17, 2010 8:10 am, edited 1 time in total.
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Let's agree to differ

Postby MarkW » Mon May 17, 2010 6:45 am

My years of experience in the pharma industry lead me to write this:
The big bad pharma conspiracy theory shows a lack of knowledge of big pharma. I doubt that most pharma cos have even heard of CCSVI at a senior level. Speed of reaction is not a feature of big pharma !!
A big pharma approach would be to promote their drug alongside CCSVI therapy, as life long protection against MS.
So AMcG, let's agree to differ on this.
Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby rssugg » Mon May 17, 2010 7:30 am

agreed - although big pharma would rather not see CCSVI move forward to eat into their market share, 'they' are not scanning websites and developing conspiracy type theories to squash the 'little folks'.
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