This Is MS Multiple Sclerosis Community: Knowledge & Support

Marc, I don't believe most doctors treating CCSVI are making 10k per patient. I have insurance and after the adjustments, my doctors were paid less than half of that. That is not a lot of profit after paying for facilities, equipment, and personnel.
I don't know about the medical device companies, but they certainly haven't jumped forward to help yet.
And, I do believe some of the IRs are doing some pretty good follow-up.
Not trying to argue, but some of the statements made are not factual.

_________________
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

Medical device companies were involved in funding ISNVD, weren't they? Do these guys fund research, and to what amounts?
Dr. Siddiqui explained that the small randomized PREMise study cost $25,000 per patient.

Actually, Dr Burks has stepped up to the plate!! I spoke with Dr Burks at the very end of the ISNVD conference and we agreed to work together to make his proposal happen. any suggestions?

Marc, when we get this document, which NIH will fund, NIH will pay for research.

Carol

_________________
I have been MSsooter but need to change my name after libration. Don't use a scooter anymore! I am LaFemmeMSketeer!

Well, I did say grossed $20 million.

It's true that insurance companies are likely not paying the full $10,000. But patients from other countries, like Canada, are paying out-of-pocket, and they are paying the full cost. Americans who traveled overseas also paid full cost. But for argument sake, let's say the average procedure has grossed $5000 (probably a low estimate at this date). It's been estimated that somewhere between 20,000 and 30,000 procedures have been done, so it's go for the middle and say 25,000 procedures have so far been done worldwide. That means that CCSVI treatment has thus far grossed $125 million. Not a small chunk of change.

Given that the amount of patients treated thus far are just a tiny percentage of MS patients worldwide, the profit potential for CCSVI treatment is tremendous. The way the medical research in this country has evolved is that the entities that stand to profit from the research generally fund medical studies (a horrible system, IMO, but it is what it is). It would therefore stand to reason that IRs, or the organizations that employ or represent them, should play a major part in funding CCSVI research initiatives.

As far as patient follow-up goes, there may indeed be some doctors that are doing a diligent job, but I honestly haven't seen much evidence for this. I guess it all depends on what qualifies as good follow-up. Most of the follow-up being done seems to entail patients self reporting their conditions, which as a research tool is known to yield highly inaccurate results. Unfortunately, at this point, this may be the only option out there. It does seem that there are treating physicians that hardly do any follow-up, but I'm just going by what has been anecdotally reported by patients on the Internet and in their correspondence to me.

_________________
Marc
www.wheelchairkamikaze.com

Medical device companies definitely fund research. Think of all the studies involving artificial joints, heart valves, cataract lenses, etc.

_________________
Marc
www.wheelchairkamikaze.com

That's fantastic news! Nice to see the government funding some important research. Medical researchers across the country are very concerned about the NIH's research budget being slashed.

http://www.utsandiego.com/news/2012/jan ... est&page=1

_________________
Marc
www.wheelchairkamikaze.com

Marc, thank you again for your rational take on the state of things. One point that also concerns me when it comes to evaluating patient results is that the estimate of 25,000 or so CCSVI procedures done so far doesn't reflect anywhere near the number of different patients treated. As it turns out, a great many of them have been multiple procedures done by multiple doctors in multiple countries using multiple different protocols producing multiple different results - on a single patient. How would one document the multiple follow-ups needed to evaluate each treatment?

And multiple treatments of each patient make the "profit potential" even more "tremendous."

_________________
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

Are we suggesting that Doctors should not profit from medicine? My daughter is finishing Medical school with a quarter million dollars of school debt. I hope she profits!!!

_________________
I have been MSsooter but need to change my name after libration. Don't use a scooter anymore! I am LaFemmeMSketeer!

Certainly doctors should profit from medicine, but as with everything else financial in the society, things of gotten completely out of whack. All I'm suggesting is that those individuals and organizations that stand to profit tremendously from CCSVI research should play a part in funding it. CCSVI has now become a thriving industry, and the "David vs. Goliath" narrative that has thus far held sway is starting to get a little long in the tooth. Now it's more like "currently small but potentially tremendous Goliath vs. old-school Goliath". The CCSVI landscape is definitely changing, with certain practitioners operating slick and aggressive marketing operations. Nothing wrong with that, either, but this should be accompanied by robust follow-up protocols and some real attempts at scientifically sound research by these same parties, lest suspicions of willful ignorance start to surface…

_________________
Marc
www.wheelchairkamikaze.com

Thanks, Marc, I see now what you mean. I agree with those concerns. I was pleased to see that 2 docs who would fit in the category (of having slick marketing etc) attended ISNVD and spoke eloquently to their peers about their experiences and their procedures and what they have learned from treating so many who had been treated before, elsewhere. Both these guys also focus on follow-up and safety. I now think that the bigger difficulty with follow up is that this is so new. Regular docs, regular ultrasound techs just don't know yet what to do about the data they get. Full MRV is still in development, requires 3T machine and several hours of scan time which will not be reimbursed; special training and software is needed to do a reliable screening ultrasound. However any good vascular US tech should be able to tell if the jugs are open, we have shorter MRV protocols in the works and now, finally, Thanks to Dr Burks, a path towards the full support of the NIH. I feel like we have gone from CCSVI 1.5 to 3.0 in just one week as a result of ISNVD!!!
Carol

_________________
I have been MSsooter but need to change my name after libration. Don't use a scooter anymore! I am LaFemmeMSketeer!

Dr. Sclafani has mentioned his schedule has lots of openings. I don't think ccsvi is flourishing as you have described. Who are you referring to when you mention slick and aggressive marketing? If it is overseas or Mexico? I haven't seen any figures on their bookings or profits, so I have no way of knowing how busy they are. Who in the US has an aggressive campaign? I personally, have not come across anything that seems to have crossed a line.
I do know that many of the doctors have been contributing a lot of time (and probably money) to continuing the CCSVI dicussion and investigation. That's not the million or billions it would take to get the studies done, but it is huge for us to have them continue to fight for us.

_________________
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

I have not seen lines crossed in US myself. I actually did not mean to disparage good marketing I actually believe we need more not less.... Slick was probably too harsh a word. Sorry.
-C

_________________
I have been MSsooter but need to change my name after libration. Don't use a scooter anymore! I am LaFemmeMSketeer!

I just don't see any IR capable of having an aggressive campaign for CCSVI treatment. The only way is to have Neuro's accept the viability of the procedure to treat the vascular problem that may help some symptoms of MS; otherwise, it will be internet driven. I have met people that live by their Neuro's opinion and are comfortable with their illness. In the mean time protocols will improve with trials lagging the changes and will require more trials. I've educated my GP and my Neuro couldn't care less. Until the attitude changes then MS activists are the only hope to keep the CCSVI promotion viable. The video in Canada is a help, http://vimeo.com/37484943, there needs to be more production like this in the US and Europe.

Well, with 25-30,000 patients treated, CCSVI is flourishing. The ISNVD meeting last week included five full days of presentations, with many more "poster" presentations given on top of that. Not that that's a bad thing, it's terrific that the CCSVI gauntlet has been picked up by so many doctors and researchers, but it's also an indication that the tremendous profit potential of the treatment has made many stand up and take notice.

As for slick and aggressive marketing, my blog has been spam bombed with comments directing people to a certain MS center, causing me many hours of work deleting these comments from dozens and dozens of posts, and culminated in my having to call the organization several times and engage in heated conversations before the practice was stopped. Maybe it's just me, but I find it disturbing when I see advertisements for CCSVI treatment right next to the ads for Mexican Viagra whenever I use Google. Most of this has been done by operations outside of the US.

The simple fact of the matter is that CCSVI has become a burgeoning industry, for better or worse. What concerns me is the fact that, as was evidenced at the ISNVD meetings, the treatment protocol is far from standardized, with a rather large disparity from physician to physician as far as aggressiveness and technique of treatment, and even the definition of what constitutes a treatable abnormality. The consensus document put out by the ISNVD lists 11 such issues (see pages 101-106 of the ISNVD PDF). The same document hosts repeated calls from many presenters for more robust follow-up, and recommends that all procedures be done as part of a study or registry. The vast majority of procedures have not been done under these auspices.

The fact of the matter is there are still a tremendous amount of questions that need to be answered regarding CCSVI, from the value of the noninvasive imaging techniques currently being used, the high percentage of patients that seem minimal or no benefit from the treatment, high rates of restenosis, etc. I'm not sure that the bulk of this learning should be done on the patient's dime, but I'm happy that patients at least now have the option to make such decisions without having to worry about access to treatment.

_________________
Marc
www.wheelchairkamikaze.com

I don't know, many IR's are grossing millions of dollars treating MS patients, so the resources and motivation are definitely there for marketing their services. The only way to get Neuros to accept the viability of the procedure is to prove, using scientific method, that it brings significant benefit to patients. I do agree that it is maddening that neurologists have taken such an irrational stance against CCSVI, but hopefully that will begin to soften as results from some of the ongoing studies are released. We are only two years into the process, unfortunately science, especially paradigm changing science, takes time.

_________________
Marc
www.wheelchairkamikaze.com