Liberals push for CCSVI trials in Canada

Private member’s bill would see federal government fund clinical trials of controversial treatment

by Anne Kingston

On Monday, a group of Liberal MPs swung the ongoing debate over CCSVI treatment for MS patients back into the federal court, metaphorically speaking. At a press conference held in the Parliament Hill foyer, Liberal MP Kirsty Duncan announced a private members bill advocating clinical treatment trials would be tabled at the earliest possible date. Liberal Senator Jane Cordy plans to introduce a similar measure in the Senate.

CCSVI has been a political hot-potato since late 2009 when research by Italian vascular surgeon Paolo Zamboni identified venous blockages in the neck and chest of MS patients; clearing them with a basic balloon angioplasty, he reported, significantly reduced symptoms, even arrested the degenerative disease’s progression in some cases. Canadian MS patients, estimated to number between 55,000 and 75,000, who clamoured for testing and treatment were told it was not available. Many neurologists—along with the Multiple Sclerosis Society of Canada– expressed concern the procedure was unproven and risky.

Last August, the Conservative government accepted a Canadian Institute for Health Research panel’s recommendation that the feds not fund clinical trials. Provincial governments, which have jurisdiction over health care, have adopted an ad hoc approach: Newfoundland and Labrador is funding “observational studies,” Saskatchewan is funding clinical trials, and New Brunswick is creating a fund for residents traveling abroad for treatment. Meanwhile, more than 14,000 MS patients worldwide are estimated to have received CCSVI treatment. Many report profound improvements; a few report their health is unchanged; some report restenosis of veins; in tragic circumstances, a St. Catharines, Ont. man died after returning to a Costa Rica clinic for follow-up care.

In an email to Maclean’s, Duncan says it’s time the federal government stepped up on the issue: “We need federal leadership, and a nationally-funded, multi-centre clinical trial to determine if treating CCSVI will improve the quality of life for MS patients.” Clinical trials have been undertaken in other countries and credible, peer-reviewed studies have been published, she said in Ottawa yesterday: “Clinical trials have demonstrated the safety of this procedure. We can’t have proof without clinical trials and it seems like we’ve been in this box of discrimination.”

The Liberal politicians were joined by Canadian MS patients who have received treatment in the U.S., among them New Brunswick resident Tim Donovan, who is currently on a cross-country CCSVI awareness tour. A year and a half ago, Donovan was wheelchair bound; his future “was looking grim,” he told media. CCSVI treatment, which cost him $10,000, left him able to walk again without difficulty. “I have my life back,” he said. “I think caution is good but we need trials, we need treatments, we need to find out if this works.”

Liberal MP Carolyn Bennett expressed her party’s concern over the lack of follow-up care for and tracking of MS patients who travel abroad. It was a refrain voiced at the MS Society of Canada’s annual meeting in Toronto, a fractious event where one member angrily referred to Canadians’ exodus for CCSVI treatment as “the greatest medical refugee crisis of the Canadian healthcare system.” Outgoing board chair Linda Lumsden called CCSVI research “exciting” but expressed caution, noting preliminary results of research studies the charity has undertaken with its American counterpart would be ready in two months (final results are not expected until next year). These studies address issues surrounding CCSVI scanning only, not efficacy of treatment, patient advocates complain. MS patients do not have the luxury of time, Duncan stated: “Four hundred people die each year because of MS in Canada, and if we can improve their quality of life, we should be doing so.”




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Liberals push for CCSVI trials in Canada

  1. Indeed, “credible, peer-reviewed studies have been published” and fail to show any evidence that Zamboni’s “CCSVI” as a disease exists at all. 

    http://medicalmyths.wordpress.com/2011/02/04/the-perfect-crime-ccsvi-not-leaving-a-trace-in-ms-liberation-is-a-hoax/

    “CCSVI” is just a name for the normally large variation in head and neck venous anatomy and flow patterns that are the same in everyone including MS patients. Zamboni, in his unblinded study, chose to associate some of those patterns with the diagnosis on MS. Well-blinded studies have shown no difference.

    No more money or time should be wasted on this junk science.

    • This comment was deleted.

    • Needles to say he is not affected by MS. If he is he is in a brain fog.

  2. No one has given any plausable argument why politicians should be getting involved in deciding what happens with research in Canada and what happens at ethics boards in hospitals which have so far, not given approval for clinical trials because of a lack of preliminary research. Why should this procedure be treated differently than any other drug or experimental therapy that needs to pass approvals before going to the clinical trial stage. This takes time. There are many more people in this country who are not receiving help with proven therapies and medications, simply because they cannot afford them. I bet there are many experimental cancer treatments that cannot be given out without the proper treatment just because time is of the essence. With cancer you either beat it and survive or you don’t – that time is critical. Wait for the evidence before Canada starts funding it. Oh and BTW: would MacLean like to do a little more fact checking and let us in on what countries are doing clinical trials and what “credible’ evidence they are so flagrantly reporting as fact. Why don’t you back up these claims. you do harm to people with MS when they believe your words as facts. Just because it’s in a quote by a doctor doesn’t make it true. They think Canada is behind when in fact, this is not a regular approved procedure except mostly in private- for-profit clinics. That’s not the same as a public health care system paid for by tax payers. At least in Canada we are protected from people who are gauging vulnerable people. It is an exodus of Canadian patients in clinics around the world becaue they are the only ones who are clamouring for this procedure. Americans are not lined up for it. Polish, Indian, Scotts or Costa Ricans, etc. are not lined-up for it because the media hasn’t created an unrealistic frenzy in those countries. Canadians are filling those clinics and giving up their savings to pay for a procedure that may or not have any effect on their symptoms. If you can afford it go ahead- until it’s proven effective – I’d like to keep my tax money in my pocket thank you!

    • You might think differently if you or your family members ever get MS and find out that you have CCSVI.  It’s easy to judge when you are on the other side of the fence.

  3. As to the comments made by Colin previous.  I’m not sure that ‘Medical Myths’ is peer-reviewed either.  As to the studies which showed no correlation between MS and CCSVI, not all studies are equal in quality.  If you check carefully, you will find that:

    A) THOUGHT OUT? The studies which seem to show no correlation between CCSVI and MS were done with far less planning time than normal for these kinds ‘peer reviewed’ studies.
    B) DESIGN: The ‘healthy controls’ used in the studies were actually relatives, and CCSVI has a strong GENETIC link–so you can’t say that a lot of  ’normal’ people have CCSVI. 
    D) QUALIFICATIONS of the researchers.  Most were done by neurologists whose specialty is not the vascular system, and even though they claimed to have followed Zamboni’s protocols for the scans, it’s the interpretation of what you see in those scans that counts.  These researchers have not been trained in how to interpret vascular issues of this kind.  Vascular issues and circulation of blood are not their specialty. Period.
    E) Technology. Most were done with MRI or ultrasound.  These methods are used fairly effectively for an initial scan when done by someone with training, but they do often miss things, even when competent people are interpreting them.  The gold standard is venography.  There are reputable doctors in the U.S. who say that, using venography, they are finding stenosis 100% of the time in people with MS.  
    F) FINANCIAL DISCLOSURES: Increasingly, medical journals are requiring financial disclosures of the researchers.  If you check the disclosures of the researchers of the negative studies, you will find that there are a lot of ties to pharmaceutical companies–one study was even financed by a pharmaceutical company.  If you don’t believe that pharmaceutical companies influence doctors, go to http://www.theamericanscholar.org/flacking-for-big-pharma/  
    Check on the ‘scientific’ tactics that some researchers use to ‘enhance’ their findings.
    So, check things more carefully than going to ‘medical myths’.  
    Go to http://www.CCSVI.org for a very reasoned discussion.  They will soon be publishing many of increasing number of reputable studies which link MS with CCSVI.

  4. It worked for me! I have had MS for over 20 years and had not been able to stand without hanging onto something or walk without a mobility aid for more than 17 years–until I had treatment for CCSVI to improve my blood flow. I thought all Canadians would deserve proper blood flow but because I have been diagnosed with MS I had to go to the U.S. for treatment–and, miraculously, many of the symptoms that had been attributed to MS have improved! Neurologists told me my poor balance and drop-foot were because of lesions on my brain but I think they’ll have to admit that my improvements from a “placebo effect” are pretty amazing!  Please watch my before/after video:

    http://www.youtube.com/watch?v=yrH9GH0N4ck

    For your information, Colin Rose, CCSVI is a specification of the commonly accepted condition of CVI (Chronic Venous Insufficiency–it simply has “cerebrospinal” indicated to identify that it is a problem with the veins that drain blood form the brain and spinal cord.   CVI has been treated for years.  Are you saying we should stop treating varicose veins, May-Thurner Syndrome, Budd-Chiari Syndrome and many other conditions because they must be “junk science”?  I have never wished MS upon my worst enemy but I am starting to think I might make an exception.

    And Fact_King–most Canadians with MS would happily pay for this treatment themselves in their own country–but we can’t even do that. Severely sick people have to pay higher prices than it would cost in Canada and many are too sick to travel anyway.  My “true patriot love” has definitely dwindled! 

  5. Well I had it done too and did not tell my hands-on team ie chiro, physio.  They were astounded at the gross dedution in spasticity…I didn’t say a word because I certainly cannot control my spasticity, and I didn’t want that whole placebo argument to come into play.  I am not up walking, I don’t know what it is but it has made my life a whole lot more comfortable and with rehab, hopefully more functional. There is something here, I just do not know what it is…

  6. THANK YOU, THANK YOU!  Dr. Kirsty Duncan for advocating and helping those who are not able.  All we want is relief and a chance to have some sort of quality of life that all these nay sayers take a total disregard of.  Let them have this condition then.  AND Colin Rose stop posting you web page.  People do not realize you get paid for each one who visits your bogus cr……………..  You are the one who spreads junk science.

  7. Health care professionals like the neurologists in this article take
    anecdotal evidence everyday regarding symptoms of multiple sclerosis. 
    You cannot definitively measure pain, fatigue, brain fog and many other
    symptoms of MS.  One person may rate pain as 5/10 yet another person
    could have the exact same pain and rate it as a 3/10.  Regardless of the
    inability to measure these symptoms, neurologists accept that MS
    patients have pain by receiving anecdotal evidence.  In other words, the
    patients tell of a symptom and the neurologists accept that evidence.

    The
    irony of CCSVI and liberation is that the same neurologists, who are
    willingly able to accept anecdotal evidence of worsening or development
    of symptoms, will not take the anecdotal evidence of patients who report
    improvement of these same debilitating symptoms after venoplasty.  Many
    of these neurologists talk of placebo affect, but if so many patients’
    quality of life is improved after liberation surgery, then why not
    conduct a blinded treatment study?  I hear tell of neurologists thinking
    that it is a waste of money to study the theory, but is it not in the
    public’s interest to have a definitive answer?  Yes or no.  Does it help
    or not?

    I have MS and I have been trained in western medicine as
    a pharmacist.  I was skeptical and cautious at first too, but as I told
    my neurologist, if 10,000 patients with MS started taking vitamin C and
    2/3 of the people have improved quality of life, would the neurologists
    and experts not recommend trying vitamin C?  I respect the caution that
    the neurologists are showing, but as scientists who have committed
    their lives to the improvement of MS patients, would they not also want
    to know the answer to whether liberation could help or not?

    An
    even better question would be, whether a patient has MS or not, if blood
    flow in the jugular vein was blocked or moving in the wrong direction,
    should that not be treated regardless of condition?  I had a dopple
    ultrasound don 2 weeks ago at Port Perry, which I paid out of my own
    pocket for because I have MS, and a week later the results showed that
    my left jugular vein had no blood flow and my right jugular vein had
    backward moving flow.  I ask not only neurologists, but all Canadians,
    if you or your family member had the same condition, would you not go
    and get treated for it?  The answer for most would be yes and more
    importantly, if you didn’t have MS you could be treated here in Canada
    for no cost.  This is discrimination at its worst.

    • Even complete occlusion of both internal jugular veins does not cause increased intracranial pressure due to collateral venous flow through the paravertebral veins via the emissary veins. Increased intracranial pressure is the only means by which “CCSVI” could potentially cause brain pathology. See blog for details.

      http://medicalmyths.wordpress.com/2009/11/24/the-zamboni-myth-ccsvi-surreal/

      Just as many normal people have your type of neck venous anatomy as MS patients.

      So don’t worry, you do not need “liberation” and you are not being discriminated against. 

      • Hey Colin, I’m not worried at all nor do I need advice.  You go do your thing and I’ll do mine.  What I can tell you is that I had a Doppler Ultrasound that I had to pay for out of pocket because I have MS.  That is discrimination since patients without MS who have a Doppler Ultrasound due to balance issues or fatigue do not need to pay.  I hope you enjoyed the news today where Health Canada is funding a treatment trial.  I guess they never considered your expert opinion.  I look forward to seeing you eat crow someday.

  8. Colin you have your information incorrect I am a living breathing healthier person because of that procedure.

    • Helen, please tell us exactly why you feel you are healthier after “liberation” and any objective measures that might correlate with your subjective improvements, such as reduction of plaques on brain MRI or reduced intracranial pressure.

  9. I have MS and have had the CCSVI treatment – twice. Travelled abroad and paid big bucks that could have been injected into the Canadian economy. I/m no scientist, but definitely noticed dramatic (although temporary) results after the second procedure. Can’t being to explain why, but now that I have “re-stenosed” and am feeling crummy again I sure wish that there were studies/research going on at home. Maybe it has nothing to do with MS, and maybe it has – without studies we’ll never know. Shame on you Conservatives for taking the ostrich approach!

    • As I said in my first comment, we do have sufficient studies to prove that “CCSVI” as a disease does not exist. Whatever temporary improvement you had in subjective symptoms was probably a transient faith healing effect. You have not “restenosed”. You never had any significant problem with brain blood flow. You were scammed. Shame on the Liberals for wanting to waste our tax dollars on Zamboni’s junk science.

      • How easy it is to be an expert at something you have never experienced =)

        • Are you implying that only doctors themselves suffering from a disease are qualified to investigate and treat that disease?

          Actually doctors with a disease or having relatives with a disease are the LEAST qualified to treat it. That would include Drs Zamboni, Code and Hubbard.

          Here is the opinion of the AMA on this subject.

          http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medical-ethics/opinion819.page“Physicians generally should not treat themselves or members of their immediate families. Professional objectivity may be compromised when an immediate family member or the physician is the patient; the physician’s personal feelings may unduly influence his or her professional medical judgment, thereby interfering with the care being delivered.”

          • My point is more that if you had experienced the post-procedure relief, you mightn’t be so quick to suggest a transient faith healing effect. I am certainly not convinced that MS and CCSVI are causational (in either direction) but possibly correlated, and that some symptoms that may be associated with MS could be relieved if there are in fact other issues at play. CCSVI as it is currently describe may not exist – you might be right, but maybe, just maybe, they’re onto something that gives us a glimmer of hope. I am sure this will not be the first diseases or treatment that began with a theory, no matter how far off it might be at first.

          • Ignore the troll.

      • Ignore the troll

    • Ignore the troll.

  10. What I FIND UTTERLY APPALING IS THE CLEAR IGNORANCE OF THE HISTORICAL FACT THAT JEAN MARTIN CHARCOT, the NEUROLOGIST who first coined the tern ‘Sclerose en PLAQUE Disenminé ‘ himself wrote that he thought ther Had to be a VASCULAR BASIS to the SYMPTOMS we call MS also the WEALTH OF SCIENTIFIC EVIDENCE of the last 150+ years DEMONSTRATING the VENOCENTRICITY of the myelin scarring. It is completely CONTRADICTION to tell people they have ‘had a supposed dangerous procedure and then DENY FOLLOW up care: even people whoi hse;f harm and assault others GET MEDICXAL CARE…or are prisoners denied this ….so how can those sop called professionals behave in such an UNETHICAL MANNER. ANd more than 30,000 PEOPL have been treated w/wide NOT 14,000 kevein http://www.vital-now.org

  11. I also have had treatment for CCSVI and results for me happened right away. No need to elaborate but proper blood flow is the best. Let’s just separate the two conditions (MS and CCSVI) stop the bickering and start a trial to get the evidence needed to allow this treatment here in Canada.

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