This Is MS Multiple Sclerosis Knowledge & Support Community

First there are three ads:
One from the MS Society, with a link to their CCSVI page.
One from AMEDS, advertising treatment at their clinic in Poland.
One from Synergy, advertising treatment at their clinic.

I am uneasy with the marketing of CCSVI.

After those three top-of-the-page ads, which must cost more than the side ads, there are the google results:

First is the wikipedia entry on CCSVI.
Second is the CCSVI Alliance page, an excellent resource for anyone looking for CCSVI information.
Third is the MS Society, again with a link to their CCSVI page.
Joan's efforts are represented again with the fourth showing, which is the link to the CCSVI in MS facebook page.
Fifth is csvi-ms.net/en
Sixth is a blog entry from Lew from 2009, but again we have Joan's efforts, because Lew's blog is a posting of one of her original write-ups on CCSVI.
Seventh is http://www.multiplesclerosissurgery.com ... ccsvi.html with an outdated list of where the procedure can be found. (Dr. Dake and Dr. Mehta are the only two listed for the US.)
Eighth is privatescan which appears to be an imaging company that then sends patients to Dr. Jan de Letter of Belgium.
Ninth is CCSVI surgery in Mexico, at the Angeles hospital. Its home page has pictures or video clips of Dr. Haacke, Dr. Sclafani, and the CCSVI Alliance, with promotional text for their clinic interspersed with the educational text.
Tenth is our forum here at thisisms.com, the birthplace of CCSVI in social media, and again Joan's efforts are represented with all she has done here at thisisms.

Next comes the ads on the side:

CCSVI Treatment in Mexico
http://www.ccsvi.mx
CCSVI Liberation Treatment Mexico
No Waiting List. Leading Hospitals!

Are CCSVI and MS Related?
http://www.msassociation.org
Expert Analysis & Study Results for
Multiple Sclerosis Study. Read Now!

CCSVI ATLANTA
http://www.ccsvi-atlanta.org
CCSVI Diagnostic Ultrasound Testing
CCSVI

Nancy Davis Foundation
http://www.erasems.org
We fund cutting edge Multiple
Sclerosis research.

Enable CCSVI DIagnosis
http://www.mrimaging.com
MR Protocols & Information Sharing
Dr Haacke PayPal Contribution Page

CCSVI Studies @ Las Vegas
http://www.cmilv.com
Centenial Medical Imaging uses 3T
MRI with the Haacke Protocol

CCSVI Treatment in the UK
http://www.essentialhealthclinic.com
Doppler Scanning using equipment
designed by Professor Zamboni

Anyone looking into CCSVI will get hit with many ads. Even here at this page, at thisisms, there is an ad from CCSVI.mx at the top of the screen while I type this. I think it is perfectly ok for thisisms to need financial support, and to use google ads, and this is what what we get from google ads.

This did not come up in the CCSVI google search, but in a search on medical ethics:
http://www.ncbi.nlm.nih.gov/pubmed/15365590

Ethics in the marketing of medical services.

Latham SR.

Abstract

This paper deals with the ethics of marketing medical services by physicians, medical groups, hospitals and other mainstream medical caregivers in the United States. It does not deal with pharmaceutical marketing, since that raises a number of special issues, some of them legal and some having to do with the unique culture of pharmaceutical marketing, which really ought to be dealt with separately. Nor does it touch on the little-explored field of marketing alternative and complementary medicine. It begins with a general description of what is included in "the marketing process." It then briefly tours some of the difficulties faced by those who would market medical services ethically, and ends with some comments on the relevance of professionalism to ethical marketing.

http://www.ncbi.nlm.nih.gov/pubmed/10132858

Health Mark Q. 1993;11(1-2):9-17.

Healthcare professionals and the ethics of healthcare marketing.

Hammond KL, Jurkus AF.

Source

University of Tennessee at Martin.

Abstract

The article explores marketing ethics considerations in the application of marketing to healthcare. While we realize that acceptance of healthcare marketing by all stakeholders is important for successful marketing, we emphasize its level of acceptance by healthcare professionals. The high levels of resistance to advertising and other forms of healthcare marketing by healthcare professionals has been largely based on the grounds that the practices are unethical. The nature of the resistance thus invites this exploration of healthcare marketing (and the marketing concept), marketing ethics, and the acceptance (rejection) by healthcare professionals of healthcare marketing.

Those abstracts aren't all that helpful, but it opens what could be a discussion of medical ethics and the marketing of the CCSVI procedure. Is there an ethical difference between offering the CCSVI procedure and actively marketing the CCSVI procedure, when the research is not yet in?

Google adds are directed at their audience. Apart from your search topic, they would also track your IP address and associate it with a location. ie I in Australia get different ads and also results.

I personally also get less ads because I have configured specific blocking of advertising on the net. see http://winhelp2002.mvps.org/ And it covers ALL my web surfing.

Interesting, Cure.

I'm not concerned about seeing the ads myself, but if a newbie searches 'CCSVI,' there's what they get, if they're in my general location. The actual top results seem ok, although the content will vary if they end up at wikipedia or CCSVI Alliance or the MS Society page, for example. But the ads....

Ideally a person will self-educate on CCSVI before they get to the point of looking into getting the procedure done. Such a task.

With all of our concern about the money and power of the anti-CCSVI forces, we now should be equally concerned with many of the folks who have identified CCSVI as the goose that laid the golden egg, and aggressively market to a population desperate for hope.

The fact that most of the physicians doing CCSVI treatment procedures are doing little or no tracking of patient outcomes stinks to high hell, if you ask me. As responsible physicians, one would think it would be their professional obligation to keep close tabs on the eventual outcomes of those on whom they are doing what is still an experimental procedure, and is in fact a work in progress.

If I wasn't so absolutely free of cynicism , I'd suspect there might be a bit of willful ignorance going on here. There are groups raking in tens if not hundreds of thousands of dollars a week doing the procedure these days, so why upset the apple cart with potentially underwhelming long-term benefits for many of the patients already treated?

We really, really need controlled studies done ASAP. But since the treatment itself is a work in progress, what standard of practice should be used, and how do we get enough neurologists involved to do proper neurologic assessments? Frustrations abound…

Agree 100%, Marc.
The medical tourism industry is maddening...and it is making the research situation worse.
There needs to be follow-up from local doctors. I was hoping we'd have more university studies going by now.
But initiating clinical trials is taking longer than expected, patients are wanting answers, and the din becomes deafening.

Glad that CCSVI Alliance is one of the top sites for info, Cece. Hope that Marie and I provide facts on Facebook.
CCSVI Alliance is working with the doctors in convening and setting up standards.
The next ISNVD meeting is all about standards of practice, and diagnostic protocol.
We're getting there, but the mass-marketing of CCSVI treatment in clinics is NOT helping.
(Reminds me of how stem cell research has become clouded by rogue stem cell clinics. The public perception becomes one of wariness- when the actual science is good--even if the individual clinics are not.)
akkkk---
cheer

I agree that google is frustrating but we need to refer to one website as often as possible. My name comes up if CCSCI or MS is added (google mark walker ms). I suggest we use the CCSVI Alliance (http://ccsvi.org) as many times as we can. I managed to get it published in the UK Telegraph, hope others will follow.
Kind regards,
MarkW

I have been reading your responses and hear your concerns for marketing CCSVI. I happen to work for one of these facilities outside of the US, in Mexico, Angeles Health. I am the RN Coordinator. I have some ocmments to you posts as I completely understand your concerns...and would like to re-assure you that not every place outside of the US/Canada is in this jus for the money. Our facility is not a clinic(we are a full scale hospital) that fails to follow up on these patients. We actually go above and beyond. Firstly, we have a 2 doctor approach. An Interventional cardiologist trained at Stamford and a Neuro-Interventionalist, one of the best in Mexico. We keep our patients for 5 nights so they are safe enough to go home. We monitor them for their response to blood thinners before they leave the hospital..IN HOUSE! For 5 nights.
Secondly, we offer physical therapy at our facility as well. It is extremely important for the patient to have PT post procedure to help assist in strengthening the muscles that have atrophied. It is the only way they will get stronger or better.
Thirdly, we have a Nurse Coordinator from the US that assists with follow ups. Patients are contacted post op to see how they are doing and are given names of centers to go to for follow up in the US at 3,6, and 9 months. We ask that they have a Doppler done and have the results forwarded to us. They are also welcome to come back to us to do so. We cannot force them to do the follow-up. We have successfully treated over 350 patients to date, and keep track of every one of them.
Do we market on the web? Yes we do. Why? Because we want people to have the procedure where they are safe. We want you to speak to our past patients and see what their experience was as to how they were cared for and see if we treated them like a “golden egg” or “cash cow.” If we don’t market the exceptional care for the patient that is out there, then we are partially responsible for individuals going to some of the “clinics” that bring you in and out like cattle and then toss you in a hotel post op on a new blood-thinner. We are partially responsible for what happens to you if that is the route you chose and had an adverse effect, such as falling in said hotel and bleeding out. We strive for safety and are very concerrned for the end result and the knowledge we can obtain from it...and to pass that research on to anyone who needs or wants it.. If we don’t let people know “Hey, there is another option..a safer one,” then that acually makes us part of the problem, and not part of the solution. Safety and positive patient outcomes is our first concern…always.

This is directed at the Mexican nurse, but any other facility is welcome to respond. Don't get me wrong, I have heard great things about your hospital. In this country they could never afford to keep day patients overnight, let alone for 5 days.. I was a day patient when I had my gall bladder out. But it's not easy for a doctor here to get very wealthy. It's more like my GP who retired at 50. A modicum more for surgeons and other specialists. But they will tell you till they're blue in the face that doing this procedure outside of a study is wrong. I'm not so sure myself because they stand to gain if they delay research, sit on their hands when they should be helping, and neurologists don't do veins. Their response to the need for Doppler ultrasound is a national embarrassment. There is Doppler being used anywhere they specialize in ultrasound. They do benefit from some of the most expensive drugs to have ever hit the market. A lot of us are covered by group plans. Some government programs help make big profits for Biogen, Serono, and the like, when we are too poor or uninsured.

I need to ask you, are you collecting data on these patients? Is it part of a study? Will it be publicly available? How do you afford that? What is your current price? Do you not make more money the longer a patient stays? What do you charge? Are you affiliated with a local hotel or restaurant? Are your extra services like physio included with your price? Do you insist the patient stay the whole 5 days? Do you use IVUS?

Hospital-borne diseases are a big problem here, not because of hygiene or anything, but because hospitals are great places to grow superbugs. My brother had c. difficile twice in hospital. What measures do you take to contain them?

Jsmlaura, I appreciate your response. Much to think on. Medical tourism and CCSVI is a complex issue.

The FDA does not allow advertising of off-label uses of devices or drugs. Now that the FDA is involved, will we see the ads disappear? When I google CCSVI, I see ads for two U.S. treatment clinics and one imaging diagnostics clinic. I have not liked the advertising. But if the US based clinics no longer advertise, we will only see ads for clinics in other countries? Oy. I believe there are people who travel further than necessary for CCSVI treatment due to not knowing what all the options are.

Try typing ccsvi.com in your address bar.

Custom Compressor Services Virgin Islands - lol!

Doesn't that go the very heart of things? If the FDA, the neurology industry, the "MS" society, and all those empathetic people in government and the drug-dealing industry, were really against people making big bucks exploiting this problem, disapproving of the flow of capital for the purpose of taking advantage of the luckless, wouldn't they have targeted those who advertised on the Internet, to both Americans and Canadians, before cross-referencing their NIH data with Facebook, to find Drs. Mehta and Hubbard?

For that matter, Dr, Zamboni has told people that if they are really interested in this procedure being mainstream, they should try to promote studies, and get into a study.

Yet the FDA are the ones telling people they can't. They can't do studies, and they cannot do them because they are not allowed to advertise them. Advertising is allowed, as long as it not to get people into a study. Make a buck, sure, but heaven forbid the progress of science.

Prospective studying could be construed as premeditated curiosity, which, if it's not against the law, certainly should be. Those who actually do make use of the wheels of commerce and industry, as long as they don't try to write any papers about it, can advertise all they want. We won't even look for them. If, however, anyone has the temerity to apply to the NIH, and get approval for a study, from an IRB, without asking us here at the FDA, threatening our buddies in the drug dealing business, intending to advertise that they do science, and publish truth, well we'll just have to see about that. They can't end-run around us. We'll show them. Some guy in Mexico, isn't even a doctor, selling "stem cells" to people with ALS? No problem. He's not doing a prospective study.

In the interest of posterity it would be nice to have a snapshot of the Internet, to show how hypocritical these great public service tycoons can be, before they realize how bad it looks.

Most of those making enough to stay in business, doing the procedure, are doing real medicine, really helping people, whether they are medical tourists from Canada or not. These doctors and business need the oversight of things like IRBs, and certification processes, and standards to guide them, written not by drug-dealing lobbyists, but by expert practitioners (IRs and vascular surgeons). Somebody needs to get busy and write those. They can't, if they can't study anything.

1eye wrote:Doesn't that go the very heart of things? If the FDA, the neurology industry, the "MS" society, and all those empathetic people in government and the drug-dealing industry, were really against people making big bucks exploiting this problem, disapproving of the flow of capital for the purpose of taking advantage of the luckless, wouldn't they have targeted those who advertised on the Internet, to both Americans and Canadians, before cross-referencing their NIH data with Facebook, to find Drs. Mehta and Hubbard?

For that matter, Dr, Zamboni has told people that if they are really interested in this procedure being mainstream, they should try to promote studies, and get into a study.

Yet the FDA are the ones telling people they can't. They can't do studies, and they cannot do them because they are not allowed to advertise them. Advertising is allowed, as long as it not to get people into a study. Make a buck, sure, but heaven forbid the progress of science.

Prospective studying could be construed as premeditated curiosity, which, if it's not against the law, certainly should be. Those who actually do make use of the wheels of commerce and industry, as long as they don't try to write any papers about it, can advertise all they want. We won't even look for them. If, however, anyone has the temerity to apply to the NIH, and get approval for a study, from an IRB, without asking us here at the FDA, threatening our buddies in the drug dealing business, intending to advertise that they do science, and publish truth, well we'll just have to see about that. They can't end-run around us. We'll show them. Some guy in Mexico, isn't even a doctor, selling "stem cells" to people with ALS? No problem. He's not doing a prospective study.

In the interest of posterity it would be nice to have a snapshot of the Internet, to show how hypocritical these great public service tycoons can be, before they realize how bad it looks.

Most of those making enough to stay in business, doing the procedure, are doing real medicine, really helping people, whether they are medical tourists from Canada or not. These doctors and business need the oversight of things like IRBs, and certification processes, and standards to guide them, written not by drug-dealing lobbyists, but by expert practitioners (IRs and vascular surgeons). Somebody needs to get busy and write those. They can't, if they can't study anything.

The FDA has a mandate to assure the public safety. The FDA has the right to assure that any research done on a device in the US that is potentially life threatening, adds substance to the body of knowledge so that additional indications can be allowed or rejected as unsafe for those devices. The fDA has a right to assure that patients in a study with a potentially life threatening device are safe. They have a right to approve the study design in those cases.

Remember these devices were defined as potentially life threatening well before ccsvi was described. es