The politics of CCSVI research in Canada

Did you miss The Senate’s CCSVI sideshow? Read this

by Anne Kingston

On Thursday the Senate Social Affairs, Science and Technology Committee was scheduled to go clause-by-clause through Bill S-204,  a National Strategy for Chronic Cerebral Venous Insufficiency (CCSVI), before voting on it. The bill, sponsored by Liberal Senator Jane Cordy, called for accelerated pan-Canadian CCSVI clinical trials, a registry to track patients who went out of country for treatment, and assured medical aftercare in Canada. But there was no cause-by-clause reading. Instead, in a surprise move, the Conservative majority silenced debate and six-to-five voted down the bill.  No surprise there.  Amid much politicking, Bill S-204′s twin, Bill C-280, a private member’s bill proposed by Liberal MP Kirsty Duncan was quashed by six votes last February.

Of course, the chamber of “sober second thought” is supposed to exist above petty partisan concerns–and Santa really does exist. But the details of this particular Senate committee, which heard from vascular specialist Paolo  Zamboni, who pioneered the CCSVI hypothesis, makes clear just how skewed the process can be. Earlier this month, Conservative senators unanimously refused to hear testimony from Canadians with MS, which shocked Cordy. “This is a patient-based system,” she says. “Why would the government silence the voices of the Canadians the committee was supposed to be helping?” (Patient testimony was invited when Saskatchewan was deciding whether to fund CCSVI clinical trials now taking place in Albany, NY.) Instead, the committee received written submissions from MS patients, many who’d had CCSVI treatment, some of whom had been denied medical aftercare in Canada.

There was concern voiced by some committee members that the summary report released Friday misrepresents the evidence presented. On the subject of aftercare being denied people who travel for CCSVI treatment, for instance, the report had this to say:
“Your committee also shares the concern expressed by proponents of the bill that, in the early stages, some patients were refused medical treatment after having experienced complications resulting from venoplasty performed in other countries. However, it should be noted that provincial health authorities and the colleges of medicine took quick action to ensure that no Canadians would be denied medical treatment.”

According to transcripts of the proceedings, Liberal Senator Art Eggleton was quick to object, noting committee witnesses told “numerous stories” of people who badly needed medical treatment and were not getting it: “Because they had gone overseas to get the procedure, they were not finding it very easy, if at all possible, to get follow‑up medical treatment here. Some of them ended up with some complications or just needed some follow‑up advice, but were being turned away.  In fact, we heard that one person died as a result of this. Another person we heard was told to go back to Poland rather than being treated by a medical specialist here.”  He added: “I am not aware of any evidence that came before this committee that indicated any action was taken. We certainly heard from medical professionals and professors that they thought that it was abhorrent that these MS patients who had gone through the procedure were not getting proper medical treatment.”

The concluding statement that “the best path forward should be determined by science and medicine, not by Parliament,” (which dovetails nicely with the Harper government’s increasing decentralization of health care), also met with opposition from the Liberals. Senator Larry Campbell called it  ”completely hypocritical”–and incorrect: “Parliament deals with health matters all of the time,” he said. “We deal with drugs and we deal with issues involving health, even though it is a provincial responsibility.  As far as this last paragraph is concerned, it would be nice if the government actually did rely on science for decision making, which we know is not true.” His coup de grâce: ”If this in fact is true, we should not have a Ministry of Health.”

The committee’s summary also suggest a willful blindness to the state of CCSVI research and monitoring in this country. That’s reflected in its statement that the interests of  Canadians with MS are best served by “continued efforts on the part of the Government through the Canadian Institutes of Health Research Scientific Working Group and the Public Health Agency of Canada’s Canadian Multiple Sclerosis Monitoring System.” Anyone following CCSVI will know those efforts are all show, no action. The government proposed a monitoring system to track MS patients in early 2011 to be run by the Canadian Network of MS Clinics, the MS Society of Canada and the Canadian Institute for Health Information. This summer,  a government spokesperson told Maclean’s it would be up and running in 2012. That’s a pipe dream. The  ”Canadian Multiple Sclerosis Monitoring System” on the Public Health Agency of Canada website hasn’t been updated since Mar. 23, 2011. “It’s a work in progress,” says neurologist Anthony Traboulsee, the contact person for the Canadian Network of MS Clinics in an interview today with Maclean’s. And CIHR’s Scientific Expert Working Group, criticized for not having any actual CCSVI experts on it, isn’t even going to be around: it’s about to be shut down, according to Traboulsee who sat on the panel.

In a trifecta revealing of the tight network now adjudicating Canadian CCSVI research, Traboulsee,  who’s also affiliated with the University of British Columbia Hospital MS Clinic,  is the  principal investigator overseeing Canadian phase I/phase II  clinical trials scheduled to take place in four centres in three provinces. They were slated to commence Nov. 1 but that has been pushed back,  Traboulsee says, due to procedural hurdles to overcome and additional ethic board approvals  to be be passed. (That’s not counting  the Quebec City and Winnipeg centres which have yet to pass ethical review boards, which could take months.) Traboulsee is “hopeful” patient enrollment will begin in Jan. 2013.

Kirsty Duncan, who blasted the government for refusing to hear from MS patients, is skeptical any progress is being made. “It’s all smoke and mirrors,” she told Maclean’s yesterday. It’s now more than three years since  Zamboni’s theory  made headlines, Duncan notes. And three years of resistance to a procedure covered by provincial health plans for people with venous malformation who have not  been diagnosed with MS.  ”We are no further along,” Duncan says. “We have announcements,  that is it. Meanwhile, people’s lives are at stake.”  She questions why the bill even made it to  the Senate, given the deep-rooted opposition to it.  ”Was that just for show too?” she asks. Whatever the intention, a show was definitely had. Just don’t believe the Senate committee’s own review of its performance.




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The politics of CCSVI research in Canada

  1. HARPER MUST GO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

  2. If you have CCSVI All I can say to this is check out the nearest Interventional radiologist in the next country nearest you. They can get you a medical doctor, cardiologist and neurologist who can help you with aftercare if needed. You just need money. or Check out CCSVI.org for things you can do now to help yourself. Successfully treated Jan 27 2011. God Bless the USA!

  3. Once again a well-reported, factual article. Senator Ogilvie, the chair of this committee, actually represents the senatorial riding where I live. I have extended numerous invitations to him to meet with some of the people from his riding who have had this life-changing treatment. However, I guess he’s just another cold-hearted conservative, because he has not acknowledged my e-mails or my phone calls. My daughter will send an e-mail to him for a meeting as well, but I would suspect that this powerful Senator will not respond either. Such cowardice from a man who represents our nation. I guess, for Senator Ogilvie, a little girl only heightens the threat of having to meet a feeble MS patient and his daughter. Supporting the party line is more important for him than meeting Canadians face-to-face. And I always thought (erroneously I guess) that the Senate was there for the people.

    In an analysis of the Senate, retired Queen’s University professor Ned Franks told the Hill Times that the Senate Committees were “less partisan” than the House of Commons. Furthermore, he stated that “they’re largely immune from the pressures of party politics”. In light of this committee, and in the context of the CCSVI file, I say this is total malarkey, or should I say “BS” in a more common vernacular?

    This article only impresses on me the irrelevance of the Canadian Senate. If it were not for wonderful people like Senator Jane Cordy, and a few others, I would be left believing that the Senate should go once and for all.

    C. Alkenbrack, Wolfville, Nova Scotia

    • I was taught hat the Senate was the “checks and balance” part of he government. It seems however they just rubber stamp the checks issued by he lower house.

  4. God Bless Kirsty Duncan for fighting so hard for the MS patients for their rights, Harper has got to go!!

  5. Yep don’t be a fool and wait for this backwards health care system to wake up. Go to the USA like wendys suggests. Canadian doctors and politicians should never have the final word on an individuals health care options. Go and find a caring doctor in the states!!

  6. Same old — same old. The HarperCons have made up their minds, and don’t want to be bothered by facts or evidence.

  7. well written GOOD luck lots CANADA from me here in the UK

  8. Thank you Anne for continuing to follow the lack of progress of Dr Zamboni’s ground breaking procedure in Canada. Having been treated in 2010, I have every day since that time been advocating for testing, treatment and follow-up care in Canada. Like so many other advocates, we will not stop until the Canadian Government realizes that through this treatment people are regaining their dignity, self respect and in some cases ability to return to the workforce. We are people, not statistics and deserve better. Until every MP and Senator can say that they have met at least ten people diagnosed with MS and treated for the vascular condition CCSVI, they cannot begin to understand the implications of their closed minded, bipartisan decisions.

  9. Which center did you go to?

    • Image Care, Latham, NY (Albany). If you are on FB, Kit, contact me please.

  10. The Senate in this country is appalling to say the least…. I mean to argue or state that this issue of CCSIV is a scientific matter and has no place in parliament is such bullshit…come on then why in hell do we have a Ministry of Health Dept and a Health Minister in our government to begin with?…if that isn’t science and politics combined then I don’t know what is?….Maybe there’s no place or reason then for this Dept to exist at all!

  11. Another superb, factual article. Thank you Anne and thank you Kirsty Duncan and Jane Cordy for your continued heroic efforts. The treatment for CCSVI does not work for everyone and it certainly is not a cure for MS; I was treated in July 2011 and would do it again in a second if I have to. Fortunately, it worked for me. Wendys is absolutely right. Don’t let your passports expire. The Harper Government doesn’t care and will never care. Treatment for CCSVI in Canada is decades away and Ogilvie and his cronies in the House and the Senate are determined to keep it that way for as long as they can. The Harper Government has played politics with people’s lives from the beginning. Shame on all of them.

    • I suppose the feds think that all the money taken from the Canadian economy to feed off shore economies is well worth the savings to our health care system.

  12. Oh and thanks to Kirsty and Jane for their endless support on the CCSVI issue and concern for the MS community as well as hats off or thumbs up to Anne Kingston of MacLeans Magazine for her thorough and professional journalism and reporting!!

  13. The Tory Senate hung their hats on the Gov’t BS and never had good intentions. The following statement is missing one major detail that they will never admit to … this is set to fail. Why? Because the MS Society are doing this researh on something they have absolutely no expertise. This was not given to the Vascular specialists who have that expertise. This tells me they do not want the truth brought forward about people getting relief from a non drug, minimal evasive and in most cases now a one time treatment. It’s all about Big Pharma having all Canadians in a strangle hold. I find taking ineffective poisons for years more evasive than a venoplasty.

    “On September 28, 2012 the Government of Canada announced that a research team will undertake interventional Phase I/II clinical trials for CCSVI in persons with MS. The experts testifying before your committee indicated that the Canadian trials are amongst the best in the world. These trials render large parts of the bill unnecessary”

  14. Provincial heath care plans are willing to pay 30 to 50 thousand dollars a year after year of taxpayers money for drugs that might work. Yet, a possible one time procedure with better results and costs under ten thousand dollars they would not pay for. Why not?

    Do the research on liberation treatment, if proven that the liberation treatment has better results than drugs and is more cost effective then go with it. Patients and taxpayers both will benefit.

    Maybe an investigative reporter, possibly one from Macleans, can see if Big Pharma/Medical or Insurance lobby groups are giving financial contributions to political partys/campaigns are involved. Otherwise, why would the MP’s and Senators keep throwing roadblocks at this issue. The should remember that patients are voters.

    • As always, when a cost-savings, compassionate, responsible action is turned down–follow the money.

  15. The Senate is a joke! The Conservative Government is an embarrassment and more Fascist than Democratic! And the collection of money is way more important than people or their health. Thank God I am getting old and on my way out! And my sympathy to anyone who is young and especially those who are young and sick or disabled.

    There are laws against this type of discrimination but we MSers (and most people with chronic illnesses need the general public to join us in our fight – not just read articles in MacLeans, shake their heads and carry on. So, What’s keeping you???

  16. How many of you who don’t have MS have to consult a neurologist if you are having heart problems or other vascular issues?? I’d be willing to bet no-one! As for the cost of the treatment – it would cost about $2500 here for the treatment, which may only need to be done once or up to three times(I don’t know of anyone who has had it done more than that). Which do you prefer to cover with your taxes for those of us who are on disability? A possibly 1-time expense of $2500 or a minimum of $20,000 per year for life for drugs that do little to nothing and can potentially make us worse? Which one makes more sense? Today is a black, black day for those of us with MS – the conservative senators have just primed the guns for the firing line that is Multiple Sclerosis.

    If this bill had been passed, we could be doing the studies to prove the efficacy of the treatment instead of proving the safety of a treatment that has already been proven in four published medical studies. We will now have to needlessly wait at least ten more years and probably millions of wasted dollars before we can even reach that point; Even if they had gone to the clause-by-clause reading of the bill and just passed the clauses that would assure those who have been treated of the follow-up care that they are now refused, lives could have been saved – there has been at least one death as a direct result of a person with MS who was treated being kicked out of the Emergency Room at his local hostpital at home! Countless people who have been treated have had their neurologists refuse to see them anymore, because they dared to get treated for their vascular condition! It is criminal, the way people with MS are being treated! They did not allow a single expert in CCSVI to testify, and did not hear a single word from anyone that this bill would have directly affected. If you’re okay with that, you need your head examined!

    • You don’t know anyone who had done more than three venoplasties? Go see this blog: http://msmikejuices.blogspot.ca/ . He is up to 11 now plus one bypass graft vein surgery.

      • Eleven plus a bypass? What? That is crazy. Obviously after three I would back off and wait for more science. I have had one. All is still good but I was under treated (was early in the process) and will wait for more discoveries before I go again. Eleven is absurd!

        Dr. Zamboni is an expert but Dr. Zivadivov is a neuro with many nay sayer connections! Dr. MacDonald has performed venoplasty in Canada. That is an expert that should have been included. Denise has her facts right.

        • So you mean that Sandy MacDonald is a better expert than Zamboni? Come on Shirley!

          • Why don’t you try reading before you comment. Shirley did not say what you just wrote

        • Obviously, Metro10 did not read your comment correctly Shirley. You did not sat that Dr. McDonald is a better expert than Dr. Zamboni. You said that Dr. Zamboni is an expert and that Dr. McDonald is an expert who should have been called as a witness.

          • Sorry, it is Shirley who misread. She said that Denise was right by writing there was no CCSVI experts invited to the Senate omitting the presence of Zivadinov and Zamboni. I don’t think that Dr McDonald would add anything more than Dr Z and Z.

          • No, I think you are not only misreading but deliberately misinterpreting what Shirley said. Dr. McDonald would have a great deal to add to the discussion and I think Dr. Zivadinov and Dr. Zamboni would have welcomed his presence and his expertise.

    • They did not allow a single expert in CCSVI to testify… Come on Denise, Zamboni and Zivadinov testify in front of this committee. They are world-recognized experts on CCSVI. Get your facts right!

  17. Senator Ogilvie should really be named “Pinocchio”–too bad he’l never be a real man.

  18. As leaders of the pro-CCSVI lobby, Christopher Alkenbrack and Linda Hume-Sastre did a major strategic error in dealing with this Senate committee. At the same time they were asking to be recognized as witnesses, they asked to Senator Judith Seidman, a woman with scientific expertise, to excuse herself after she asked questions about the state of science regarding CCSVI following the announcement of one italian study that contest the existence of CCSVI. Using their Facebook pages, they asked their followers to send emails to the Senate. Mr Alkenbrack even went on a radio show to attack Senator Seidman reputation http://www.youtube.com/watch?v=LWiaKYATYjI&list=UUbBNnR7ruD6a50h4bqPEjKg&index=1&feature=plcp .

    From my point of view, those disrespectful actions against an important member of the Social affairs, Science and Technology committee of the Senate gave a very bad impression of the pro-CCSVI lobby and explain in part the final conclusion.

    • Metro—They were reacting to Senator Seidman’s disrespectful behaviour during a discussion of this bill. Audible giggling and the way she used the term “liberation”. Such childish,disdainful and ignorant behaviour is unacceptable when people’s lives are at stake,particularly from someone in this position.

      • Exctly Katcam …
        Please get your facts straight , Metro10.

        • Attacking Senator Seidman might leave to you some kind of satisfaction but at the end, it is partly for this reason that Tories refused to meet pwMS treated for CCSVI. Sorry but it was a mistake…

          • For your information, I’m the one you “accuse” of being out of line. Funny, I had positive communications with Senator Seidman afterwards. We have agreed to differ, and that is fine by me. She answered me respectfully, and our exchanges were positive.

            Also, I’m not the one who laughed at MS patients or the word “Liberation” ….. she is, and it is on public record.

            As for the Tory position on meeting people with MS, this was decided long before this. If your position statement were correct, why then did they not just disregard me, and meet with Sandy MacDonald? I would have been fine with this. They are the ones playing political dominos with the lives of MS patients.

          • I concur with Christopher Alkenbrack’s Tory’s position regarding Jane Cordy’s Bill S-204. I had a brief conversation with a Canadian Senator during the autumn of 2011. He was not a member on the Social Affairs, Science and Technology Committee and the discussion happened outside of his office. He told me that neither Dr Duncan’s Bill C-280 nor Jane Cordy’s Bill S-204 would pass either in the House or the Senate.

            How astute of this Senator to know Dr Duncan’s Bill would be defeated on Wednesday 29th February 2012 and that Jane Cordy’s Bill would be shut down on 22nd November 2012.

          • Chronologically this played out very differently than was mentioned by “Metro 10″. I asked to be a witness long before Senator Seidman made her comments on “Liberation Therapy”. I was refused to be a witness , long before this played out. My reaction came as a result of HER overt disrespect. I’ve read Senator Seidman’s curriculum vitae, and indeed it is exceptional. That is why 1. having worked at the Montreal Neurological Institute one would expect her to have more respect for patients who suffer with a neurological deficit and 2. as a Senator, she should be held to a higher standard and not snicker at the word “liberation”, or mock this theory.

            Interestingly too, Seidman only quotes from the “negative” studies. One has to wonder where and by whom she was fed her information. Even Zivadinov addressed this issue at the February 2012 conference of the International Society for Neurovascular Disease (ISNVD) when he states that the negative studies are published in the neurological journals, and the positive studies are published in the vascular journals.

            I am also aware that Dr. Kirsty Duncan (PhD and professor of medical geography at the University of Toronto) supplied a complete list of ALL of the studies both positive and negative to the Senate committee. Interestingly, Seidman chose only the “negative studies”.

          • BS. This woman doesn’t deserve anyone’s respect she is disgusting.

      • She’s ignorant and behaved this way deliberately

    • Metro. I would like to correct you …not one of those conservative senators are as important as you like to think. They showed themselves for the garbage they really are..what the senators did was disrespectful to this entire country…these conservative senators showed Canada why we don’t need a senate. They are nothing but puppets for special interests and harper There is not 1 conservative senator who deserves the respect of one MS patient in this country. Christopher and Linda are outstanding human beings and there is a few on they joke of a committee who should learn to follow the likes of them in life. You see the conservatives put on a Sham of a hearing they knew right from day 1 they would be squashing this bill. So really who was disrespectful? Who wasted dollars and time? The conservative senators did… So please show respect to Linda and Christopher they deserve it

      • Hear, hear Sandra. Linda, Christopher and many others deserve the utmost respect. Look at what they are doing. They speak for those who cannot. This cruel condition is what many take advantage of and by bullying those who have no ability to fight back. I am in shock that the government have done so as well.

    • metro10 I have to ask what your interest in this topic is? Also I would like to thank you for taking the time to read the article and comments please be sure to share all available googled articles with your friends, so everyone can form their own opinion. I will pray for you that you never need the medical system to help you, only to get turned away in this our Country Canada. I also will do my best to see that my tax dollars always go to better the future lives of all Canadians including you.

  19. I hope after the BS story the conservatives gave on there pathetic joke of a hearing on this bill it means we will see the minister of health fired. They have made it clear with there decision gov shouldn’t be involved in health issues … So why are the tax payers giving her a wage. ? She’s useless anyways , her actions are no different than these conservative senators who showed how special interests and being the puppets for the harper conservatives is what mattered. As a matter of fact what they did with this bill proves the senate is a waste of time and dollars. The u.s. seems to care about Canadians getting good health care so thank god for them. Kirsty thank you so much for your tireless efforts in trying to get these useless idiots to do the right thing. I do wonder what the conservative senators got in exchange for what they did ? And all of Canada should be asking this very question

  20. To Metro10: I have the emails to prove that I asked to be a witness at the Committee hearings in September, long before the hearings started. Your chronology is wrong and so is your analysis.
    Linda Hume-Sastre

  21. Thanks Anne for reporting on this. Kirsty is an angel, that helps all of us with MS. I had CCSVI 8 months ago with great results. I still work every day and pay taxes. Too bad we are black balled by the medical community. CCSVI gave me a better quality of life.

  22. http://www.nlm.nih.gov/medlineplus/news/fullstory_136220.html Many have died on the MS drugs because of PML and too many have promoted many deadly MS drugs too for profits , shares and commissions on top of having very high salarys. Many are accountable of. Every MS drug needs to be scrutinised. This is one big reason why CCSVI is not being allowed its so easy to work out whats really going on

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