The silent treatment: How Canada has failed MS sufferers

Internal documents show why Canada has not kept its promise to accelerate contentious clinical trials for MS

Beatrice de Gea/The New York Times

On June 3, 2010, Peter Liu, a scientific director of the Canadian Institutes of Health Research (CIHR) in Ottawa, sent an internal email outlining his thoughts on a procedure causing medical and political schisms—and inciting patient activism. Liu, head of the Institute of Circulatory and Respiratory Health, was responding to CIHR executives’ request for his opinion about chronic cerebrospinal venous insufficiency, or CCSVI, a condition identified by Paolo Zamboni in 2008. Zamboni, director of vascular diseases at the University of Ferrara in Italy, made headlines in Canada in November 2009 with his hypothesis that multiple sclerosis, long viewed as a neurodegenerative condition, had vascular roots and was linked to blocked veins draining blood from the brain and the spinal cord. He found venous angioplasty—sending a balloon to open an obstructed blood vessel—alleviated, even arrested, symptoms.

Zamboni’s pilot study yielded amazing results but lacked scientific rigour: it was small and non-blinded; no one could duplicate its results, including Zamboni. Still, it stirred rare hope among the estimated 75,000 Canadians suffering from the incurable, degenerative condition. By June 2010, many were travelling out of country, paying upwards of $10,000 for CCSVI scanning and treatment unavailable to them at home. Some returned with YouTube testimonials, others with dashed hopes, others with complications. The issue had become a flashpoint. People with MS were mobilizing for treatment. CCSVI was up for debate in the House of Commons. The CIHR, which hands out just under $1 billion annually for scientific funding and reports to Parliament through the Ministry of Health, was under pressure to act. Canada has one of the highest per capita MS populations: three people are diagnosed every day. Eight provinces wanted to co-fund pan-Canadian trials, according to CIHR documents obtained by Maclean’s under an access to information (ATI) request.

Liu’s response to CIHR executives was cautiously optimistic as he called for clinical trials: “My own interpretation of the data is that CCSVI is likely a contributing factor in a restricted subset of MS patients,” he wrote. “We need a much larger multi-centre trial, including merging some of the ongoing trials, or developing patient selective criteria to narrow down to [a] group that will respond.”

Liu’s advice was ignored. Instead, as hundreds of pages of documents generated within the CIHR between June and September 2010 obtained under ATI reveal, the agency embarked on a process that was focused more on political optics than scientific results and, in hindsight, designed to reinforce the status quo.

The initial call for CCSVI research was showy. In November 2009, Yves Savoie, CEO of the Multiple Sclerosis Society of Canada, invited proposals. In May 2010, the society committed $700,000 to a US$2.4-million, two-year project with its U.S. counterpart: seven studies looking at the relationship between vein anatomy and MS. Treatment studies would await results. Savoie also called on the feds to invest $10 million: “It is obvious that the relationship between CCSVI and MS requires further investigation,” he said.

The feds appeared willing. On June 15, 2010, CIHR’s president and CEO Alain Beaudet spoke before a parliamentary subcommittee looking at CCSVI; he boasted of the CIHR’s “patient-based research” and “urged” researchers to apply for targeted grants. “Research into clinical treatment has to be accelerated,” he said, noting an August meeting at the CIHR would review “how best to accelerate research and innovation in MS.”

But research wasn’t accelerated; it was stalled. No grant proposals met the CIHR’s criteria. The August meeting ended with a decision not to fund clinical trials. There wasn’t enough “evidence to proceed,” according to a press release. Not mentioned was the fact the CIHR didn’t have the money to fund clinical trials; it was overcommitted by $10 million for the year. Only in June 2011, a week after Liberal MP Kirsty Duncan announced plans to table a bill calling for a “national CCSVI strategy” that threatened to turn the issue into a political football, did the CIHR find evidence to justify trials. Five months later, it called for proposals. On April 18, 2012, Health Minister Leona Aglukkaq announced one had been selected. The researcher’s identity will be revealed “if and when ethics approval is granted,” a CIHR press release offered cryptically.

Meanwhile, an estimated 25,000 CCSVI treatments have been performed worldwide; how many on Canadians is unknown. A registry announced by the CIHR in March 2011 will be running by the end of the year. Three deaths have been reported—two Canadians and one American—along with complications and reports of the dangers of using stents to keep veins open, contrary to Zamboni’s protocol. The situation is at a crisis point—with desperate patients travelling for treatment that may or may not benefit them, and the MS Society advising people with MS not to be “examined or treated for CCSVI outside an established research protocol,” which doesn’t exist in Canada.

Fed up with federal inaction, provinces are going rogue. Earlier this month, Newfoundland and Labrador announced results from a one-year, non-controlled observational study that found “no measurable, objective benefit” among 30 patients who themselves reported short-term “physical and psychological well-being.” The province said it won’t insure the procedure until more research is in. Saskatchewan has just begun sending 86 MS patients to a clinical trial in Albany, N.Y. Many residents have already taken matters into their own hands, among them Michelle Walsh of Beechy, Sask. Walsh, 38, was diagnosed with MS at age 18. Her condition was deteriorating when she travelled to Bulgaria for treatment in July 2010. She’d just been fitted for a wheelchair. “I had nothing to lose and everything to gain,” Walsh says. Improvements were instant, she reports. Six months later, given advances in the procedure, she travelled to California for another treatment. Earlier this year, feeling her fatigue returning, she believed her veins were closing, or re-stenosing. Also experiencing chest pain, her GP referred her to Saskatoon cardiologist Ruben Rajakumar, who treated her for venous hypertension. Soon after, the province’s College of Physicians and Surgeons instructed Rajakumar not to treat MS patients; any CCSVI procedure complications had to be referred to the local MS clinic, a situation Walsh compares to “being sent to a dermatologist for back pain.” She returned to California for a third procedure. All three totalled $33,000, though fundraisers defrayed costs. The expense was worth it, Walsh says: her quality of life has improved—no more chronic fatigue or headaches, clearer eyesight, renewed sensation. CCSVI treatment isn’t a cure, she says: “But it’s the only thing that has given me hope, or relief of a lot of symptoms.” MRIs show her brain lesions are not active. She has stopped taking MS drugs. She needs a cane to walk, “but the wheelchair sits in my garage collecting dust.”

The CIHR taking on CCSVI, a political and medical land mine, was new territory for the federal agency. Approving new or off-label procedures is the purview of provinces, and often happens without clinical trials—arterial angioplasty being a classic example. But Zamboni’s theory challenged the entrenched, though unproven, autoimmune model of MS, one that underlies a mindset and a US$13-billion industry of symptom-modifying drugs. It also unleashed the spectre of patients demanding an unproven procedure.

Neurologists, the go-to MS specialists, were quick to denounce the CCSVI hypothesis. “There is not a shred of real evidence anywhere that messing around with these veins does anything to help MS patients,” Paul O’Connor, director of the MS clinic at Toronto’s St. Michael’s Hospital, told the National Post in early 2010. O’Connor was then a researcher on clinical trials for fingolimod, much-touted as the first oral MS drug (Health Canada approved it as Gilenya in March 2011).

Doctors wanting to research CCSVI faced a Catch-22. Venous scanning and angioplasty are insured under the Canada Health Act, but not for treating MS. Sandy McDonald, a Barrie, Ont., vascular surgeon, travelled to Italy in early 2010 to study Zamboni’s protocols. He returned to oversee treatments of six MS patients; four had “significant symptom improvement,” McDonald says. His plans for a larger trial were quashed at the hospital level because he wasn’t part of a national trial. But no national trials had been approved; his application for a CIHR grant was rejected.

ATI documents reveal CCSVI was a priority at the CIHR in the months before the August 2010 meeting to “accelerate research.” The agency clearly felt the urgency: “Pressure for us to target funds and ensure no [neurologists] review the applications as they are biased,” read a June 15 internal email.

Working closely with the MS Society, the CIHR assembled an “expert” panel to assess the radical new procedure, itself a paradox. An email called for “the real stars” in neurological issues, with the proviso they’d had research funded by CIHR or the U.S. National Institutes of Health, which meant they were professionally invested in the autoimmune theory. A few vascular specialists were also contacted. One, Barry Rubin, medical director of Toronto’s Peter Munk Cardiac Centre, was surprised, he told Maclean’s: “I’d never seen an MS patient in my life.” He agreed “partly because I thought there was a need for a vascular expert and partly because I was indebted to CIHR for funding my research for 15 years.”

Oddly, anyone experienced with Zamboni’s imaging or treatment protocols was excluded. The CIHR’s Beaudet, a neuroscientist himself who openly questions the CCSVI theory, wanted to “avoid controversy and bias,” he told Maclean’s in August 2010, though CCSVI critics, including O’Connor, made the cut. Zamboni wasn’t contacted. Instead, CIHR executive director Christine Fitzgerald asked the MS Society for the name of a “credible researcher abroad familiar with Zamboni’s protocol” in a bid to “head off criticisms.” She coached Beaudet in answering questions about Zamboni’s absence: “Inviting Dr. Z would be highly inappropriate. The scientists will be discussing how one could best evaluate his work.”

Communication within the CIHR was often tinged with a Yes, Minister-style concern with optics and “consistent messaging” with the MS Society. Staff monitored “CCSVI” on Google Alerts, separating media reports mentioning “CIHR” from those that did not—even plotting bar charts and graphs with the data. Gauging public temperature was vital: the federal-territories-provincial health ministers were meeting in St. John’s on Sept. 13, with CCSVI on the agenda. The CIHR was keen to keep political distance: “Don’t want to be pulled into ftp politics,” Fitzgerald wrote Beaudet in June 2010.

The agency was in constant contact with the Ministry of Health. One exchange indicated CCSVI was on drug companies’ radars; the ministry wanted input after being approached for a meeting by an official for Merck Serono, the company behind another oral MS drug in clinical trials. He wanted “to discuss CCSVI treatment and a new oral MS drug treatment,” though a further CIHR email clarified: “There is no linkage between this drug and CCSVI.”

Canada’s largest scientific research agency didn’t always do its homework. Some invited scientists declined due to lack of expertise: “I don’t work at all in the area of multiple sclerosis currently,” one responded in an email. The agency also didn’t appear to research vascular links to MS following a June 15 email from its VP of government and institute affairs: “According to a Hamilton researcher, this idea of blood drainage to the brain has been linked to MS on and off for 100 years.”

Students gathered the CCSVI studies reviewed at the meeting—19 readily available on PubMed.com, though accessing some journals proved difficult. Research supporting the status quo was highlighted: “Here are three of the most recent publications on MS and CCSVI . . . that do not support Zamboni’s theory,” a CIHR staffer wrote.

Two days before the meeting, the office of the deputy minister of health asked whether the CIHR even had the money to fund CCSVI clinical trials. It didn’t, Fitzgerald said: “[Beaudet] would have to redirect money for this, so could find some but definitely not all.” In a recent interview, Beaudet confirmed a $10-million shortfall. “We hadn’t seen the crisis coming,” he says. But it wasn’t a problem, he asserts; by the time a trial was approved, “we’d be in the next fiscal [year].”

The Aug. 26 meeting of 23 participants, including 14 neuroscientists and two vascular specialists, was held in private. Nine studies were reviewed; two, about stent risks, didn’t even refer to CCSVI. The first “discussion point” of the meeting set the tone: “It is premature to conduct a clinical trial on something that isn’t known to exist.” An Aug. 31, 2010, press release announced a unanimous decision: “an overwhelming lack of scientific evidence on the safety and efficacy” of CCSVI treatment made it “unethical to study the procedure further beyond the [MS societies-funded] studies.” They would await more research to see if research was warranted. The release was meticulously vetted. In an internal email, Beaudet complained he found an early draft “a little too focused on the term CCSVI when in fact we don’t even know whether such an entity exists.” He proposed “venous malformations” or “abnormal venous drainage” instead. Previous vascular links to MS were overlooked: “There do not appear to be other references to this proposed condition in the medical literature.” The release announced a “scientific expert working group” had been formed to monitor CCSVI research—and it would become the de facto authority on the subject. Many in the group were investigators on the MS societies’ ongoing studies. (In a recent interview with Maclean’s, Beaudet says scientists reviewing their own work isn’t a conflict here, even though he’d excluded Zamboni for that reason: “It’s good science to ensure coherence of the seven studies.”)

On Sept. 12, 2010, the eve of the ministers’ meeting, Newfoundland Health Minister Jerome Kennedy vented his frustration in an email to the federal health minister: “I have been concerned about the CIHR’s apparent dismissal of observational research methods and the slowness of the critical path,” he wrote. He said his province would launch a small observational CCSVI trial. An ad hoc provincial response was emerging; Saskatchewan pledged to fund clinical trials, New Brunswick set up a $500,000 fund for residents to be treated offshore, B.C. contributed to a provincial registry. (Within the CIHR, a newspaper column criticizing the provinces for “micro-managing” MS research was circulated and praised.)

The CIHR stayed on the file. In February 2011, it awarded an “expedited knowledge synthesis grant” to yet another group of scientists to conduct a “meta-study” of CCSVI literature. The lead, Andreas Laupacis, a Toronto epidemiologist, had criticized the composition of the CIHR’s panel in a December 2010 article. He had no experience with MS, he says, but had been paid to sit on a safety review panel for Gilenya.

On June 20, 2011, days before the CIHR’s CCSVI panel was to meet again, MP Kirsty Duncan made her call for a national CCSVI strategy—accelerated clinical trials, a national patient registry and access to aftercare. (The bill was quashed by six votes in February 2012.) Duncan, a vocal proponent of CCSVI research, says she was fed up: “The CIHR put a political process in place instead of a scientific process. Evidence was being wilfully ignored from the literature, from scientific conferences and from returning Canadians treated for CCSVI.” On June 28, the CIHR reviewed the CCSVI literature “meta-study”—eight reports, four that were available in August 2010. A June 29 press release announced the government would fund a phase I/phase II CCSVI clinical trial.

In May 2012, nearly two years after his call for “accelerated” research, Beaudet told Maclean’s he’s pleased with the progress, even though research has yet to begin: “We were entirely validated,” he says of the wait, citing mounting positive anecdotal evidence from patients after CCSVI treatment, the meta-analysis, and science now linking CCSVI with other neurovascular conditions. “My bet is that it is not causal,” he says of the relationship between CCSVI and MS. He floats another theory: “It’s possible that some of the symptomatology is linked to vascular abnormalities it is acting upon; that’s one of the hypotheses we’re going to launch the trial on.”

Results from the MS societies-funded studies won’t be in for months. In the interim, patients’ needs have been forgotten as scientific conversation focused on whether CCSVI causes MS, not if treatment might offer symptom relief for some—per Liu’s June 3, 2010, email. As Marc Stecker, a person with MS in New York City who blogs on the much-read WheelchairKamikaze.com, puts it: “The marketing of CCSVI seems to have far outdistanced the science.” CCSVI advocates say the phase I/II trial, which will cost at least $1 million and take 18 months, is a waste of time and money. Eight safety trials, assessing over 1,300 procedures, show no serious complications. Beaudet himself calls venoplasty a “low-risk” procedure: “The biggest risk is re-stenosis.” Laupacis says the trial is too small to draw valid conclusions: “We’ll have to look to international work.” Michael Shannon, a former deputy surgeon general of Canada and chair of the scientific advisory board for advocacy group CCSVI Coalition, has called for fast-tracked phase II/III trials, moving directly into assessing treatment. Shannon, the former co-chair of the FPT Steering Committee on Blood Governance, draws parallels between the government’s inaction on the CCSVI file and the stonewalling by Health Canada and the Red Cross that lead to the tainted-blood scandal of the ’80s: “Have we learned nothing from the past in terms of delaying for so-called scientific due diligence when there is potentially considerable benefit to be had from the treatment once you understand the risk-benefit equation?”

Barry Rubin, who sits on the CIHR’s “scientific expert working group,” remains skeptical of the procedure, indicated in a damning article he co-authored in the May 2012 Journal of the American College of Radiology. “The ‘Liberation procedure’ for multiple sclerosis: Sacrificing science at the altar of consumer demand” compares CCSVI treatment to laetrile and “faith healing” before claiming that funding clinical trials of a procedure “that has minimal basis in rational, empirical knowledge seems questionable.” The lead author, Michael Brant-Zawadzki, made a complaint to the U.S. Food and Drug Administration, which led to an FDA CCSVI “safety alert” in May, citing complications and three deaths.

Other, more subtle, pullback is evident. On May 1, before a federal health committee, Deanna Groetzinger of the MS Society said they were revising a $1-million pledge to CCSVI trials made in September 2010: they’ll invest $500,000, then another $500,000, “if the phase one and two are successful.” Echoing Beaudet, Groetzinger praised the process: CCSVI research in Canada is moving at “lightning speed.” That’s not how Warren Ruttle sees it. “The time the government is taking to approve a simple procedure is astounding,” says the 36-year-old Regina resident who was diagnosed with MS in 2007. Ruttle hasn’t travelled for the CCSVI procedure due to uncertainties, cost and lack of aftercare: “I can’t afford to travel to get basic follow-up care.” He applied to Saskatchewan’s out-of-country trial but was ineligible; he’s allergic to imaging dye. Now he’s applying for government disability, having stopped working as a chef in February 2011.

Ruttle’s plight signals how, for people with MS, months can be life-changing. And why, in a scientific vacuum, Canadians with MS will continue to be medical refugees. Only hard, unbiased science, if and when it comes, will alter that equation.

These excerpts from documents obtained under an Access to Information request outline the Canadian Institutes of  Health Research’s (CIHR) response to public and political pressure to research chronic cerebrospinal venous insufficiency, a new condition proposed by Italian doctor Paolo Zamboni.

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The silent treatment: How Canada has failed MS sufferers

  1. This is an amazing article that shows how Canadians with MS have been the subjects of systematic discrimination. It shows that the MS Society does NOT speak for me as an MS patient, and how the Canadian government has betrayed us.

    • Funny you should have nothing new to say about this Chris. Your hatred for the MS Society is well-known.

      • What did you take away from article? Your comment is an example of knee jerk rhetoric.

        • You are right about tireds comment. Some people keep busy looking to slight advocates like Chris.

      • Hatred is a very strong word – I prefer distrust and betrayal. I have difficulty supporting a charity that hinders research into the most effective treatment for SOME people with MS, as is the very point of this article. I would encourage you to read it for what it says.

        I have a difficult time supporting a charity (not only the MS Society of Canada, but ANY charity) that spends more on fundraising than on client services. My wife and I have stopped giving to 2 other Canadian charities since 2009 for this same reason.

        Up until September of 2009 I was the president of the Annapolis Valley chapter of the local MS group, and I love people with MS. I empathize with them – I visit them when I can, I speak to them, I encourage them. I’m also not scared to give my opinion of the MS Society of Canada and the fact that they pay $250,000 – $299,999 per year to their president and CEO.

        I find it funny that you can post a comment and hide behind a pseudonym “tiredofsamerhetoric”. I too am tired of the same rhetoric that is fed to us through the MS Society of Canada website. If you’re tired of my rhetoric, please feel free to skip over my comments the next time.

      • I think that Joan Beal of CCSVI in Multiple Sclerosis sheds a little more light on the politics behind this. I would invite anyone to read her insight on this matter.

        https://www.facebook.com/notes/ccsvi-in-multiple-sclerosis/more-on-anne-kingstons-brilliant-expos%C3%A9-/10150970145272211

        I too am tired of the useless rhetoric!

        And by the way, “tiredofsamerhetoric” – for your information I actually made a donation to one Canadian MS Association this year…..one that cares about MS patients and doesn’t promote the status quo. I’ll be going to visit the director when I’m back on my feet and doing an innovative exercise programme that is being developed to help MSers who have been treated for CCSVI.

  2. This shows the complicated truth of what we MSers have been living with. The only way out was to leave the country and deal with doctors that don’t play politics and give us CCSVI because it makes us feel better.

    • They don’t play politics?? But they will take your money!

      • Well, of course they take our money! They get paid for services rendered. You don’t expect an American (or any other ) physician to treat a patient without being compensated, do you?

  3. I’m sure glad I didn’t wait for Canadian trials–who knows when they’ll ever get around to them! The CIHR doesn’t listen to their own experts so why should anybody believe they have the best interests of people with MS in mind when dragging their feet to maintain the status quo! I believe I fall into the “subset” mentioned by Peter Liu because I have had amazing results after treatment. Who knows how far I would have degenerated if I hadn’t done my own risk/benefit analysis and gone to the U.S. instead of waiting for Canada to actually care about my quality of life and not just pretend to!

  4. Did the Newfoundland Study recognise that the people they included in thier study had improvement for 3 months? How many restenosed? Another study designed by thier lead reasercher to cast shadows on CCSVI.By ignoring the truth and modeling the study to disprove the truth.The lead reseacher,it should be no surprise,is a neurologist with ties to big pharma.
    The article is very good,and touches the edges of the real facts of why ms people are openly discriminated against in this great country of ours.

    • Steve – I question the Nfld study because I personally believe that a handful of people were “cherry-picked” to be part of the data. Imagine wasting $400,000 on a study and not paying for travelling expenses for those who did well and wanted to participate in the study. People with MS aren’t rich and I know of two cases where people could not participate in the study because they couldn’t afford to travel to the other side of the province.

      Poor study design lead to the failure of the Nfld study. I can’t wait to read the complete version when it becomes available.

      Imagine how far $400,000 could have gone to relieving symptoms of MS. Rather they wasted $13,300 per person involved in this study. As if it’s not sad enough to live with MS….we have to fight to have the truth known.

  5. I tried three of the medications “approved” in Canada for MS. My MS still progressed. I was told November 2010 by my MS neurologist to prepare myself mentally as I would most likely be using a wheel chair by spring 2011. I was also told there were no other options as far as medications I could use since I was now in the secondary progressive stage of MS. I had my first CCSVI procedure done in the United States December 2010. For me the effects were immediate. Not only did my MS not progress to the point of using a wheel chair but I hardly used my cane. I had other wonderful improvement on various ms symptoms as well. Yes I declined after a few months but no where near the point of disability I was pre treatment. I went for my second procedure December 2011. I am holding my own still. I use my cane now and then, mostly for distance or when the weather is too hot and I must be outside. I am still no where near how I was November 2010. The CCSVI procedure changed my life. It’s the ONLY treatment which had any effect on slowing down the progression of my MS. I have spent approx. $30,000 in expenses and the cost of the procedure out of country. I can’t afford to do this procedure out of country again. I have never abused our health system in Canada. I don’t use the ER’s as my personal doctor service. I have even gone back to work because of the CCSVI procedure and therefore off CPP disability payments. I truly feel let down and shoved under the rug in my own country. Don’t get me wrong. I am very proud to be a Canadian, other countries have it much worse, but we have to ability to change our system and help our citizens.

  6. Another great and truthful article by Anne Kingston. Kirsty Duncan has given many of the facts in this article in speeches she has made in the House over the past two years. She was ignored as were the experts in CCSVI. The MS Society does not speak for me and the CIHR and Health Canada have no interest in the health of Canadians with MS.

  7. The minister of health and any other government politician needs to step down now…to sell Canadian ms patients down the river because of a turf war and because of money which is what this really is all about is criminal and unforgiveable…they have deliberately put others vested interests ahead of sick Canadian ms patients and it is deplorable…the conservatives actions as of late is deplorable and they need to be voted out..the minister of health well she needs investigating and her cushy job needs to be gone…CIHR needs to be investigated and jobs need to be lost and charges need to be given to anyone who was apart of this…

    • Well said. The Minister Agluklak (dont care how her name is spelled) and Beaudet should be fired immediately and have criminal charges laid against them. I am so disgusted at the blatant corruption that is rampant in the CIHR. They are totally responsible for human suffering that could have been avoided. I dont know how scum bags like them sleep at night!

      • look into how Minister Leona Aglukakk’s own territory (Nunavut for those who don’t know) is doing and then question how she is the minister of health!?!?!

  8. This, my friends is why thousands of us left Canada for this simple procedure and will continue to. Thank you Anne Kingston for exposing the truth.

  9. thankyou for doing this so much its appriciated lots in the UK too via myself here in the UK

  10. Another thing traboulsee, jock, and Kathryn Knox who were also very involved in keeping ms patients sick and disabled they need to be jobless also….they have done the national circuit with there lies and fear mongering…Knox is one of the more disturbing people she isn’t even a neurologist yet runs saskatoons ms clinic and how dare she go on national tv, do print interviews bashing ccsvi when I doubt she even fully understands this disease ms…these few people were doing the dirty work of neuros and big pharma…and none of the people in this article including the mss should ever be involved in trisls nor should the federal gov there interests in keeping ms patients sick is very clear…any trials especially Newfoundland area is not to be trusted..any ms clinic trials is not to be trusted..then we have Dr.F that’s a story all on its own and his contempt for ccsvi and he’s an ms neuro..this shows they can never be trusted with anything that has to do with a cure or anything like ccsvi that can keep our lives healthier for a longer period..everything these o called ms experts have done to date needs to be questioned and investigated..because its a simple fact they want us sick and disabled…

  11. Thank you Anne Kingston! Truth be told! Wonder if we can still be called paranoid? The stall tactics and self-serving corruption is beyond disgusting and a full investigation into this file needs to take place and the people responsible for stalling and blocking this should be held accountable. Neither the CIHR nor the MSSC represent me. Glad I didn’t wait for you guys to get your ducks in a row.

  12. STATUS QUO IS THE MOTTO OF NEUROS ! Why not allowing people to pay out of their own pocket to access the Doppler and a MRV scanning and get the procedure done here in Canada ? La cité médicale in Québec city would be an ideal place for it with their state-of the -art scanner and a surgical room next to the screening equipements and with the best doctors in town. If cosmetic surgeries are allowed to enlarge the size of my breast and diminish the size of my bottuck, then why not enlarging the size of my neck veins ? I guess an ass is worth more than a brain here in Canada !!! No wonder why we have assholes governing our country. Sorry for venting. M.Th from Québec city

  13. It makes me wonder when I read the following 3 fact finding statements about Dr. Rubin who is a member of the CIHR’s “Scientific Expert Working Group” why a respected vascular surgeon would be so unprofessional and negative on such a profound new discovery , and show such disrespect to a fellow vascular expert (Dr. Zamboni) before the proper clinical trials were even started. My only conclusion is, if CCSVI clinical trials did receive the proper and timely funding, then Dr. Rubins ongoing yearly funding from the CIHR for his own research (non Ms related) could be jeopardized.

    Why would Dr. Rubin’s opinion be considered an expert opinion over a Vascular doctor like Dr. Sandy McDonald who has actually taken the time and effort to not only educate himself with the science and protocol but also participate in testing and actual venous angioplasty treatment of Canadian MS patients. This reinforces once again the intentional roadblocks that continue to delay a safe alternative treatment that may improve the quality of life for so many Canadians living with this progressive and devastating disease. (below are the 3 statements)
    “Fitzgerald said: “[Beaudet] would have to redirect money for this, so could find some but definitely not all.” In a recent interview, Beaudet confirmed a $10-million shortfall.”

    ” A few vascular specialists were also contacted. One, Barry Rubin, medical director of Toronto’s Peter Munk Cardiac Centre, was surprised, he told Maclean’s: “I’d never seen an MS patient in my life.” He agreed “partly because I thought there was a need for a vascular expert and partly because I was indebted to CIHR for funding my research for 15 years.”

    “Barry Rubin, who sits on the CIHR’s “scientific expert working group,” remains skeptical of the procedure, indicated in a damning article he co-authored in the May 2012 Journal of the American College of Radiology. “The ‘Liberation procedure’ for multiple sclerosis: Sacrificing science at the altar of consumer demand” compares CCSVI treatment to laetrile and “faith healing” before claiming that funding clinical trials of a procedure “that has minimal basis in rational, empirical knowledge seems questionable.”

    My personal thanks to Anne Kingston for reporting the truth and confirming what so many CCSVI advocates have believed for the last two years.

  14. It is a sad day, when facts are put in the faces of authority, only to notice their eyes are purposely shut. People, cruelly, suffer from MS, it is not a game of politics. In my opinion, discrimination, corruption, stall tactics, lip service and a lack of diligence are being exposed here. This government is losing the confidence of so many people and their families. To allow suffering and act slowly in an urgent situation is only causing more harm.
    A process of this nature should not take so long to develop. If the studies were left in the hands of MS patients and the correct specialists, the matter would be resolved by now! Thank you for this straightforward and informative timeline.

  15. Once again Anne Kingston has dished the dirt on organisations that have a duty to look after the interests of the citizen not themselves. This reveals such a high level of human frailty in people who should have risen above that if they have opted for working for the political and medical good of others. Well done Anne and Macleans. I don’t know of many others that have looked at the situation with such clarity.

  16. It’s fungal douche canoes like Beaudet that perpetuate the suffering of so many in the MS community. Shame on him and our government.

  17. I think they are getting rich off the tears and pain of others. This is the most pathetic thing i have ever witnessed. I went to egypt and got a standard of care that i could never find in Canada. They treated me like a human and although i was only supposed to be in there for about 4 hours, my complications forced me to stay for 6 days. The doctors there told me they would pay out of their pocket to keep me there until they were completely done with me and i walked out of the hospital. They even paid for the followup medication that was prescribed for me. End all to be all i may not be that amazing right now but i think i have restanosed. But as God is my witness, i ran for 2 months after the procedure. I had not run for about 4-5 years before that. Yet i ran for 2 months. So you tell me, is that enough evidence for Harper and his satanic regime? And all of you know how much us MS sufferers value the smallest thing coming back. Like feeling, ability to hold your bladder, to not feel fatigue, to run. May God curse these people and return their animosity for sick people onto them. And may God spare their children of their own evil doings.

  18. I am a person with Secondary Progressive MS and did not jump the gun to go out of the country for a procedure that, in my opinion, did not have research behind it. I am, dare I say, a proponent of the MS Society of Canada, and am proud to say so!
    New meds were coming down the pipes and I opted to wait and I am glad I did. I was a candidate for Fampyra, an oral med, and have had great results. Improvements in my mobility have not only been noticed by me, but by family, persons in the community, my family doctor and God forbid, my Neurologist (tongue in cheek here). Because my mobility has improved, other areas of my health have improved.
    I would suggest that demonizing the MS Society is short sighted and perhaps, just perhaps, they know what they are doing.

    • Maryann – I too know people who are doing very well on Ampyra, and I am happy for them. However, “if” MS is an autoimmune disease (the jury is still out on that one), Ampyra does not help with the long-term treatment of MS. It is a medication for mobility.

      Any improvement in mobility is an improvement to your quality of life, and that’s what counts. :) Best of luck to you!

    • Good for you Maryann and I hope you keep feeling well. BUT I have absolutely no options. I am beyond repair according to these so-called experts. So …. I have another option and I am not allowed this either? I was a proponent for the MSSC also UNTIL I was told no to getting a non drug very minimal evasive venoplasty treatment. That is when I realized for sure the MSSC do not have our best interests at heart and refuse to look at anything other than drug therapy. If anyone is short sighted and demonetizing it is the MSSC against those they are suppose to advocate for.

    • As Christopher Alkenbrack says drugs may only be the answer if MS is an auto-immune disease (which is what MS Societies believe) what we are fighting for is for the disease to be research more comprehensively. It appears from latest research done by Dr Stys (as presented at the Alberta MS Society AGM this year http://www.youtube.com/watch?v=hLE3szhXeRw ) it appears that the myelin sheath is breaking down from the inside, so not attacked by the immune system. There are ways in which the damage caused by MS can be fixed only the MS Societies are not promoting more research into them: http://www.youtube.com/watch?v=ysFiW26MHfQ&feature=relmfu

  19. Thank you for this informative and factual article along with the photos of the emails..This is no surprise to CCSVI advocates in Canada. I am 17 months post angioplasty with good results after twelve years of MS. Thank God for people like Ann Kingston and Kristy Duncan who stick to the scientific facts about CCSVI and report them. This article will be shared with my doctors who are very happy for me and friends who can’t understand why Canada isn’t treating people with blocked veins and MS. Blatant discrimination and we have no recourse.

  20. I have been so frustrated with the pace of CCSVI research in Canada that I signed up to particpate in a treatment efficacy trial run by the University at Buffalo Neurosurgery team.
    Since PREMiSe is a small trial (10 patients treated in an open label Phase I safety trial and 20 patients in a double-blind randomized Phase II efficacy trial), I am sure that the conclusion will be that a larger trial is warranted. Canada should review the preliminary data from this trial, which have vetted the safety of the procedure, and jump right in to Phase II and III treatment trials.

    I have been in this trial since April 2011, and expect to find out in September whether I was in the treated or untreated arms. Then, the trial should reach its conclusion by next February.

    Based on my experience, I think it will take at least two years to get any meaningful results from a study. For a person with progressive MS, two years can be very significant. I have gone from walking 100 meters unasssisted, to needing to use a cane, to having to use a scooter on a regular basis. I fear what futher deterioration will occur in the next two years.

    We must get additional studies started as soon as possible.

  21. It is an accurate portrayal of the mess created when turf wars and pompous individuals are in positions of power. It is also incredibly sad and disheartening to read this article knowing the state of MS in Canada. We as a nation have lost track of the people and families who live with and are trying to overcome illness.It reflects the sad state of health care.

  22. Thank you Anne for telling the story
    end to end.

    I’m not sure if I found the following
    bits amusing or not.

    “Barry Rubin, medical director of
    Toronto’s Peter Munk Cardiac Centre, was surprised, he
    told Maclean’s: “I’d never seen an MS patient in
    my life.”

    “Barry Rubin, who sits on the CIHR’s
    “scientific expert working group,” remains skeptical of the
    procedure, indicated in a damning article he co-authored in the May
    2012 Journal of the American College of Radiology. “The
    ‘Liberation procedure’ for multiple sclerosis: Sacrificing
    science at the altar of consumer demand”

    Mr. Ruben sure got up to speed in a
    hurry. When all his experience with MS & CCSVI is sitting on an
    ‘expert working group’ is he even qualified to be published in such a
    medical journal?

    “The lead, Andreas Laupacis, a
    Toronto epidemiologist, had criticized the composition of the CIHR’s
    panel in a December 2010 article. He had no experience with MS, he
    says, but had been paid to sit on a safety review panel for Gilenya.

    Ditto with Laupacis. Here’s a link to
    a youtube vid of his about CCSVI. The folks who put them together do
    a really good job.
    http://www.youtube.com/watch?v=WAswkie5tFY

    I’ve been doing well with LDN (low dose
    naltrexone). Best of luck fellow MS folks. I hope

    you find something that works for you.

  23. I would like to thank Macleans Magazine for the courage providing us with Anne Kingston’s in depth article on CCSVI and for the papers from the Access to Information for all of Canada and the World to read.
    The details of how the Citizens of Canada have been deceived for the past two years is deplorable. Those of us who have been diagnosed with MS and fight for testing, treatment and aftercare for CCSVI, are treated as unthinking and unintelligent individuals. In many cases, MS is the result of bad blood flow not the cause of this condition. The Minister of Health, CIHR and MSSC are all equally responsible for allowing the MS Neurologists and the Drug Companies to overshadow the truth.
    Perhaps now that all of Canada knows of the deceit, they will press even harder to ensure that we are able to obtain treatment in our own country. The procedure is safe. Many of us are no longer taking costly drugs and able to take care of ourselves without the support of Provincial health systems and facilities. A huge cost saving to all Canadians and no comparison to the dignity that is achieved for the majority of us who have had CCSVI angioplasty treatment.

  24. What I’m waiting for is when the side effects of this treatment come home to roost and then there will be cries for compensation for those who undertook the unproven treatment.

    Creating a valid and reliable study into this treatment is not easy (but you wouldn’t know from all the instant researchers that post on this article) – Canada is not the only country who is cautious about this treatment which is why the treatment is being done in basically third world countries.

    • All I can say to you Maureen … God help you if you get CCSVI. Then we will see how long you wait.

    • Many of the treatments are being performed in the USA with reputable IR’s. This third world idea is long past it’s prime. Creating a study will be hard but not so hard that it can’t be done.
      I am one of the ones who has had bad side effects from this treatment and I certainly haven’t asked for compensation and I don’t know of anyone else who has. My desire was to have a proper follow-up ultrasound (can’t be done in my city because the techs can’t report on something they haven’t seen), the ability to talk to a vascular specialist to find out what exactly was happening within my vascular system (can’t do that because I have MS). I went from using a cane and dragging my leg to walking perfect, I wasn’t cold anymore, I was able to go for hours without having to go to the bathroom. I could feel with my fingers, I could lift my arms above my head, I could prepare a meal at the counter without being bent over, and other symptoms were gone.
      This is about getting trials done or at least started.

      • Kim I’m curious as to what negatived side effects you have experienced? I have been trying to find people who have had negative effects as a direct result of the angioplasty? I would love to talk to you.

    • Are you kidding me? The u.s. is not a third world country which is where many of us had gone…your ignorance towards ccsvi is very apparent…you and the other one on here who are making comments without any knowledge is laughable..there is no one asking for compensation because of any problems, mind you they should be with the deaths and complications from gilenya and tysabri…I bet your one of those ppl who approve of these meds no matter what happens to the patient…you should be ashamed of yourself. Just sitting there saying your waiting for complications makes me sick.

      • Those doctors who are offering venoplasty in USA are mostly motivated by money. Just few of them are doing research. They work under the radar since 2010 because CCSVI is not discussed publically in large media as much in the rest of the world than here. Now that the FDA has published a warning on CCSVI last month, they will be closely watched. Even Medicare and private health insurance companies are stopping now to reimburse for venoplasty in USA because its utility to treat MS is not yet proven.

  25. What everyone fails to understand is the fact that this procedure is NOT a cure for MS. I have had it done, and as long as my veins remain open and drain my brain the way they should, I will not experience any more progression.
    I do not understand why this is such an issue for both federal and provincial governments, the CIHR, the MS Society and any other entity that has put up roadblocks to our health. This type of surgery has been around for ages. Follow-up care isn’t necessary, unless stents are involved. All I have to do is take baby aspirin every day. The drugs used in the angioplasty are exactly the same as a heart patient would receive. We all sign the waivers and the risks are exactly the same.
    Adversaries of this procedure for MS patients are illogical, immoral, unethical and willfully ignorant.

    • I’m curious how you know that you will not experience more progression if your veins stay open? Did a Dr. tell you that?

  26. Thank you, Anne Kingston and Macleans for ensuring that the ugly truths behind the CCSVI stalling are brought out into the public eye, rather than kept buried in closed-door meetings and sly e-mails between guilty parties.

    The “conspiracy” theory is not a theory. The self-interests of certain groups are the only thing being protected in this ongoing farce, at the expense of MSers’ health, well-being and quality of life.

  27. It has been obvious for 3 years that there is a cohesive effort by the CIHR, MSSC, & Health Canada to keep CCSVI Theory suppressed. What are they so afraid of? Based on this extreme effort by these groups, even a casual observer would think that CCSVI must be a really significant game-changer. Now that much of this under-handed evidence has been revealed, it will be interesting to see what efforts are made by the organizations to save face, divert, further deceive. Nice to see that others care about the patients, even when the organizations that are paid to support the patients do not. Thanks to Anne Kingston for her relentless digging.

    • Amy, you nailed it: “Save face, divert, further deceive” – that certainly has been the modus operandi of these groups.

      Thank goodness for Anne Kingston’s investigations and her courage to reveal these ugly truths.

  28. Another area they are ignoring is Lyme Disease. Canada does not do proper lyme disease testing. Only a lab in California Cygenex does. MS SOCIETY=WASTE OF EVERYONE’S MONEY

  29. Google-”Mistaken for MS actually had Lyme disease”. True stories. And worth checking out, you have nothing to lose.

  30. Anne Kingston has done some great work. I am wondering if under the Freedom of Information Act she could find out what pharmaceutical companies have been lobbying our infamous Health Minister lately?

    We know our Minister can be bought, as was evidenced by her treatment of Big Tobacco; I wonder what she would do for Big Pharma?

    I am so happy that Anne finally was able to prove what MS patients have been saying for literally years. At last.

    I have written some stuff that people might want to read on my Facebook page.

  31. To Anne Kingston: Perhaps the number of deaths connected with CCSVI Treatment could be put in context by mentioning the number of deaths that occur from MS drugs that have been approved by the same set of people that are now delaying CCSVI Treatment? Just a thought.

  32. Thanks Ann and Kirsty for all you do for us msers. I’m also glad I went state side to get CCSVI. The CIHR and MSSC do not care about us with ms.Yesterday was Canada Day, and I’m a very proud Canadian, but feel like everyone else with this condition, that the CIHR has ignored and slowed down the trial process for all involved. CCSVI has sure helped me.

    • HI Paul, I hope you are well, where in the states did you go to have the procedure?

  33. I am disgusted with the Canadian government on this issue. The CCSVI procedure has changed my family’s life, but we are the lucky ones. There are too many MS patients unable to bear the financial burden (or the physical burden) of travelling outside the country. The greedy (and influential) drug companies should be ashamed. Great article, Macleans! I only wish you had published how many MS patients are on Fingolimod, and how many have died so far.

  34. A question in my head finally surfaced. It only took two years following the 2010 annual meeting of the MS Society. I have MS, was there and was surprised to see an MS Society slate of candidates beat MS patient family members for positions on the board. The official slate had more proxy votes which must have been collected by MS Society staff.
    The question: How is it that MS Society management get to decide who their bosses will be?
    Heck, Does anyone know? What do upper management make at the MS Society? The board must decide those packages and gosh, is there a conflict?

  35. I recovered from MS in the 1990s — no thanks to the MS Society — no thanks to neurologists — no thanks to the medical system — no thanks to the government. They believe that making a living from illness is a legitimate pursuit. They have no interest in “the cure” that destroys their livelihood. Run and walk and jump and “search for the cure” with outstretched hand — money in the bank for one more year. It’s like having a tag day for the Mafia. How many “cures” do they have to show for all the billions of dollars funneled into their bank accounts — the bank accounts of the MS Society and the neurologists and the drug companies? It’s all about money — and nothing more. But perhaps one more thing — legal liability.

    The MS Society, neurologists, the medical system and the government are all morally bankrupt. There is not a single neurologist who will ask people with MS to “open wide” to discover if the most powerful neurotoxin on the planet is hiding in their mouth under the guise of the word “silver”. This is a no-brainer — pun intended. So-called silver amalgam fillings are 50% mercury. The Zamboni thing is one more MS distraction in a long list of MS distractions — anything to keep people’s eye off the mercury ball — pun intended. The name of the game is to avoid the obvious — the #1 neurotoxin on the planet sitting two inches from the brain — whatever it takes.

    Read my speech to the MS Society delivered in Vancouver in 1997

    http://zap.intergate.ca/speech.html
    They tried to shout me down — unsuccessfully. The cause and “the cure” are one and the same thing. If you remove the cause — toxicity in the form of mercury (or other chemicals or metals) — voila !! “The cure” appears. The “MS Mystery” is cloaked in 1000 shades of deception so that “The Mystery” will forever remain a mystery. I did not recover from MS by accident. I was paralyzed. How do think I accomplished this impossible feat of recovery? How many people do you know who have done the same thing?
    Around the same time I delivered my speech to the MS Society I cornered Dr. Heddy Fry in front of Denman Mall in Vancouver. She literally ran the other way when I asked her why the Canadian government sanctions the use of deadly mercury in the dental industry. What has changed since 1997? Absolutely nothing — except on an individual level through increased awareness and informed choices. The government continues to facilitate criminal medical activity in collusion with the dental system and the medical system. Poisoning patients is criminal. The system is fundamentally rotten at the core — totally corrupt. It will only be restored to health when the criminals at the helm are no longer allowed to control it.
    Don’t hold your breath.

  36. Congratulations to Anne Kingston for her nomination for this article for the National Magazine Awards! The MS Community and CCSVI Advocates applaud you!

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