DrSclafani answers some questions

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

Postby CureOrBust » Fri Apr 09, 2010 5:33 pm

drsclafani wrote:no. It has been 100%. But i am sure someone will be normal sometime
I know you may be in contact with him soon, but you may have heightened interest to talk to Prof Thompson regarding this patient (especially before my appointment with him). http://www.thisisms.com/ftopicp-103345.html#103345 Who is the old dog now? :wink:
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Postby drsclafani » Sat Apr 10, 2010 9:00 am

Johnnymac wrote:
drsclafani wrote:to answer your question, my control has included about 100 carotid arteriograms per year done to evaluate intracranial aneurysms and trauma of the neck. The venous phase of those ARTERIOGRAMS show me the jugular vein. working for 38 years , i guess that is ober 3,000 arteriograms on otherwise normal people without MS, (my general patient population is young healthy african american males). I never see the slow flow, the narrowings, that i see on the VENOGRAMS of caucasian MS patients. That is my control.


Dr Sclafani, this is a pretty powerful statement. How many professionals like yourself do you think there are that could make a similar claim? That could prove significant in the patient struggle to get treated right now if there were multiple seasoned professionals who went on record with similar stances.


Here is the rub. All of that data, almost all of it, was in the days of film based not digital angiography. Our state law requries that imaging tests be kept for seven years. Because all these films take up space, several rooms were occupied by them. Thus after the 7 years, all that data was discarded. So i cannot go back and prove to skeptics that my memory was good and that i didnt overlook the findings.



Moreover, since you all know the rules that generally apply (years probably vary by state), it behooves you all to garner your data before it gets discarded. Afterall, although the records belong to the provider, you, the patient, have a right to the information. One should always request copies for your own records.
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Postby drsclafani » Sat Apr 10, 2010 9:06 am

bretzke wrote:Many U.S. health insurance companies cover MRV and ultrasound tests for CCSVI. If CCSVI is confirmed through this testing, will these same insurance companies cover the Liberation treatment if it follows an IRB?

The costs to insurance companies for current MS drugs is staggering. Even if the Liberation procedure was required every 18 months to address restenosis, it would still be less expensive to an insurance company than current drug treatments.

Are insurance companies following CCSVI developments? I know Big Pharma is and they don't like it!


i cannot answer how insurance careers will address this. THey are unlikely to pay for research into unaccepted nonstandard therapies or research that is randomized prospective double armed studies. . They often pay for procedures that are considered acceptable therapies in which some aspect is being studied.

I hope that they see the economic advantage to liberation but they will likely want to see more than one open label study that reports that it is effective.
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Postby girlgeek33 » Sat Apr 10, 2010 9:08 am

Dr. Sclafani, can you tell us how many patients you have treated for CCSVI to date and when you started CCSVI angioplasties?
Thanks,
Denise
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Postby drsclafani » Sat Apr 10, 2010 9:13 am

Are insurance companies following CCSVI developments? I know Big Pharma is and they don't like it!


my turn to ask a question.....does anyone have direct quotes from big pharma about their stand on ccsvi?
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Postby Lyon » Sat Apr 10, 2010 10:14 am

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Postby IbRiz » Sat Apr 10, 2010 10:25 am

Dr Sclafani:

How dangerous would you say your procedure for CCSVI is - could it be fatal? And if the patient where required to have angioplastic the second time - would this be more risky than the first time?

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Postby cheerleader » Sat Apr 10, 2010 10:53 am

drsclafani wrote:
Are insurance companies following CCSVI developments? I know Big Pharma is and they don't like it!


my turn to ask a question.....does anyone have direct quotes from big pharma about their stand on ccsvi?


Hi Dr. S-
listening to Pink Floyd on the turntable with our teenager (we're constantly making him listen to real music) ironically, Money was playing when I read your post... and thought I'd chime in on the most popular thread in all of TIMS history!!

big P does not speak for themselves--but I would say that their spokespeople (print media, p-sponsored doctors) have spoken out loud and clear...with words like experimental, dangerous, crazy, zealot, unproven, radical, etc. And in the case of the network news and print interviews my husband and I have done, which are edited or in the can-- which will never see the light of day--I can say that their silence speaks louder than words.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby girlgeek33 » Sat Apr 10, 2010 11:03 am

Well said Joan!!! My sister works for a Big Pharma company (diabetes drug branch), and though it is her livelihood, she tells me all that we are saying about Big Pharma is so very true! They are a business, there to may money. That's why drugs that are running out of patent, all of the sudden become available in a time-release formula. Same drug, add chemicals and mg and all of the sudden, new patent, charge more, and many more years of adding to their bottom line! I was never the conspiracy theory type, but in the last 5 years I have had my eyes opened! There is some amazing work being done, and there are good things that can come from big Pharmas. It is a shame that they resort to bad practices and take advantage of the sick...
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Postby Lyon » Sat Apr 10, 2010 11:58 am

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Postby Zeureka » Sat Apr 10, 2010 12:34 pm

drsclafani wrote:
Are insurance companies following CCSVI developments? I know Big Pharma is and they don't like it!


my turn to ask a question.....does anyone have direct quotes from big pharma about their stand on ccsvi?
Don't think pharma will directly do big quotes (they cannot admit) but they find their ways to sneak them in via other routes or action... For example the news on Fingolimod was greatly placed in the Italian RAI media news everywhere on TV just before an important Zamboni conference in Italy. No question it undermined CCSVI news, as when I asked that w-end of the conference friends and family whether they have heard of the media news on MS and CCSVI they all said "ah yes, I heard about that - yesterday saw news about this new promising pill that cures MS!"

So who knows how much anti-CCSVI pharma lobby "gift" cash for such strategies flows behind the curtains to govs/media, doctors/scientific pubs, (associations?), and other...

To approach private insurance companies would think is good idea, as they would have a purer economic interest. However, not each country is based on private insurance company systems in same weight. And although the gov's healh care systems should realise that there is loads of money to save, the politics on also other economic interests such as pharma then come into play. Well, I guess we all know this.

And wonder if anyone will find a direct anti-CCSVI pharma quote...

However, found this link, which is interesting:
http://csvi-ms.net/en/content/critical- ... -neurology

An Open Letter to the Authors of Chronic Cerebrospinal Venous Insufficiency and Multiple Sclerosis (Khan et al, 2010, Annals of Neurology) Ashton Embry, Direct-MS
Background: A week ago a “Point of View” article on Chronic Cerebrospinal Venous Insufficiency and Multiple Sclerosis was made available online at the website of Annals of Neurology. It was written by 11 authors, with both neurologists and radiologists being represented. Notably 7 of 11 authors (including the first four, senior authors) disclosed significant financial interests with pharmaceutical companies which produce drugs for MS (see Appendix)...
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Postby cheerleader » Sat Apr 10, 2010 12:48 pm

Lyon wrote:Holy smokes Joan! I've got to be honest...your aluminum foil hat clashes terribly with your jacket!


Bob...don't you know, tin foil goes with everything! :wink:
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby drsclafani » Sat Apr 10, 2010 2:01 pm

bretzke wrote:
Many U.S. health insurance companies cover MRV and ultrasound tests for CCSVI. If CCSVI is confirmed through this testing, will these same insurance companies cover the Liberation treatment if it follows an IRB?

The costs to insurance companies for current MS drugs is staggering. Even if the Liberation procedure was required every 18 months to address restenosis, it would still be less expensive to an insurance company than current drug treatments.

Are insurance companies following CCSVI developments? I know Big Pharma is and they don't like it!


with my IRB approval in hand, I will apply for a grant from an major insurance company to perform some liberations thanks to a lead from one of you

lets see how that goes
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Postby shye » Sat Apr 10, 2010 2:26 pm

Dr Sclafani,
Stacemeh wrote:
I am wondering if there is some logic to the idea that maybe the iron deposits found in MS lesions are an endproduct of hypoxic injury which in turn is occurring because of reduced blood flow and it is actually hypoxic injury we have to worry about, not iron per se?


There is a thread here on TIMS about iron and phlebotomy, generating a fear of iron--Stacemeh's posit seems a reasonable answer.
Wonder if you could comment on this.

Thanks for your incredible interaction here...
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Postby ozarkcanoer » Sat Apr 10, 2010 2:40 pm

Dr Sclafani,

What a good idea to get grants from insurance companies to study CCSVI. They have a lot to gain if CCSVI proves to be beneficial for people with MS. The cost of the drug I take, Copaxone, has gone up 50% in two years. And with all the people with MS clamoring to get tested and treated there won't be any cost for phase I, II and III clinical trials. As a matter of fact, BNAC with their upcoming CCSVI testing program will help offset the cost of all the CCSVI trials by charging for the testing and at the same time perform an open label trial. I will gladly pay for the testing out of pocket in order to see if I have CCSVI and help prove CCSVI and MS to be true or not. I know that not everyone with MS can afford to pay for the testing. But BNAC's CTEVD trial is cost-free. So we all benefit. This is called free-market with compassion thrown in.

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