Aglukkaq’s message on CCSVI treatment

Was it media “misinformation” or Orwellian double speak?

The Honourable Leona Aglukkaq, Federal Minister of Health (left), speaks with the Honourable Jerome Kennedy, Minister of Health and Community Services for the Province of Newfoundland and Labrador, during the annual conference of federal-provincial-territorial ministers of health in St. John's, NL, Tuesday, September 14, 2010. (MARKETWIRE PHOTO/Health Canada)

Thirteen days after she ignited a firestorm with her announcement that the federal government does “not have the evidence to proceed” with pan-Canadian clinical trials investigating CCSVI treatment for multiple sclerosis, Health Minister Leona Aglukkaq lashed out at the press who she claims mangled her message. “We needed to clarify the misinformation that was laid out in the media,” she told the scrum assembled in St. John’s, NL, to cover this week’s meeting of federal, provincial and territorial health ministers.

The minister wanted to make clear that her government is “still open” and “never said no” to funding clinical trials on CCSVI, the controversial MS treatment pioneered by Paulo Zamboni to restore blood flow in the blocked neck and chest veins of patients via a routine balloon angioplasty. She also wanted it known the feds and provinces are in sync on the issue: “We are speaking with one voice on MS,” she said.

Aglukkaq’s statement offered a minor rewording of her Sept. 1 announcement that did say “no”—at least for now—to government funding for pan-Canadian clinical trials into CCSVI based on the recommendations of a study conducted by Canadian Institutes of Health Research (CIHR) in consultation with the MS Society of Canada. That report concluded scientific evidence didn’t support clinical trials but that the situation should be monitored via seven two-year studies into the MS-CCSVI link funded by the MS Society of Canada and the National Multiple Sclerosis Society in the U.S. The minister also announced at the time that the government would set up a consult with the study’s researchers.

Exactly how the media distorted Aglukkaq’s message isn’t clear. But it’s understandable—politic even—that she take another run at CCSVI, a topic that has polarized the medical community over the past year and sent a fault line down the health ministers’ confab. In July, Saskatchewan’s government drew a proverbial line in the sand when it announced it would fund clinical trials into CCSVI treatment. On Monday, Jerome Kennedy, health minister to Newfoundland and Labrador, kicked off the meeting with news of an observational study tracking residents before and after they left the country for CCSVI treatment (but would not provide the treatment itself). Yesterday, Alberta’s Health and Wellness Minister Gene Zwozdesky announced that he wants to speed up an “examination” study underway in his province involving patients who’ve undergone CCSVI treatment.

Aglukkaq has suffered slings and arrows of newspaper editorials that condemned the government’s wait-for-research-to-see-if-research-is-warranted position. Her office has been deluged with angry letters from MS patients who feel they can’t wait for the clinical trials required before the government green lights the procedure. Hundreds have traveled offshore to far-flung clinics, cashing into their RRSPs to pay upwards of $10,000 for the treatment. Anecdotal evidence from more than a thousand of CCSVI patients attests to varying degrees of symptom relief. Many report increased energy, improved mobility, increased sensation and improved bladder control and vision.

Zamboni’s approach contradicts entrenched thinking that MS is a neurological condition and autoimmune disorder best treated by drugs. But these drugs, with their laundry list of side effects, also pose huge risks, including fatal brain disease. Even Alain Beaudet, the president of CIHR and chair of the CIHR report, concedes the balloon angioplasty advocated by Zamboni is a “relatively low-risk” procedure. The greatest risk of venous angioplasty is veins collapsing again, he told Maclean’s.

It’s an emotional issue to be sure, one that is extending beyond the country’s estimated 75,000 MS patients to become a metaphor for its health system’s priorities. So vitriolic has been the backlash to the government’s decision that last week the MS Society of Canada was compelled to issue a letter to assure angry members it was committed to CCSVI research. Criticism of the government’s decision mounts. Yesterday, Direct MS, the country’s second largest MS charity, issued a critical analysis of the objectivity of the CIHR report.

Agluukaq said it was “important that we set the record straight for MS patients and their families.” But saying the government is “open to funding” clinical trials into CCSVI treatment does not change the fact the government is not funding clinical trials—just as saying the provinces are all “on side” doesn’t make it so. Liberal health critic Kirsty Duncan questions the government’s “double speak”: “They say we need evidence-based medicine,” she says. “But they are doing nothing to gather evidence.” She believes the government should be collecting data on the hundreds of Canadians traveling out of country for treatment: “If it did, we wouldn’t be looking at the evidence as anecdotal. The only other way to collect data is to do clinical trials, and they’re not doing that.”

Another question mark is the minister’s claim that research results from the seven studies will be available in “a few months.” Yesterday, a MS Society of Canada spokesman told Maclean’s “preliminary” findings from the seven studies are expected in “the early part of 2011”—six months from now at the earliest. (None of the seven studies involve CCSVI treatment; all explore possible links between CCSVI and MS using scanning technology.) If the government is committed to evidence-based medicine, it will have to wait until the studies are concluded two years from now. That’s the blink of an eye in research terms—but not for patients suffering from a degenerative condition in which months can mean the difference between walking and paralysis.

What many MS patients want to know is a simple question: why they’re subject to a double standard when it comes to the right to blood flow. When a non-MS patient is diagnosed with a blocked vein, it’s cleared. If someone requires surgery for a varicose veins in her legs, there isn’t a problem. So it’s perplexing that clinical trials destined to take years are required before MS patients receive similar treatment.

“Time matters,” says Duncan. “People die of this disease. And it has a terribly high rate of suicide.” Many are waiting for the minister to say ‘Yes’,” she says: “But until she actually says ‘Yes’, it’s the same result.”




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Aglukkaq’s message on CCSVI treatment

  1. Thanks you Anne Kingston for setting the record very straight.

  2. Thanks for researching and reporting the truth. This is a horrifying travesty for people who need their veins unblocked—now.

  3. Thanks Anne, well done. Why can't the Health Minister recognize and address the conflict and bias of her CIHR Advisory Committee. They simply cannot afford for ccsvi to be a success. If the Minister forced her committee to be fair and impartial and truly look at the issue they would no doubt do the right thing and study this issue with treatment promptly. MS patients deserve this from the Medical Community and the Politicians.
    Lastly the potential gain the government would have in health care savings is well worth the research.

  4. Thank you Ms. Kingston for yet another unbiased and truthful article. The media did not misrepresent the Health Minister's statement about clinical trials for CCSVI. The Health Minister took the advice of a biased, conflict of interest ridden "expert" panel and is now paying the price. Tough. Anyone who wants to know the truth about the CIHR/MS Society recommendation to the Health Minister should read (and distribute as widely as possible) Dr. Ashton Embry's brilliant analysis of the Beaudet Report. The MS Society funded studies are being conducted by neurologists (some of whom were members of the CIHR/MS Society panel) and are simply re-inventing the wheel – the data they seek is already available. Biogen (the maker of Tysabri) has acknowledged that as of 2 Sepember 2010, 68 MS sufferers have brain infections and two more have died bringing the total of deaths to 14 (see http://www.msrc.co.uk) – but angioplasty is too dangerous!

  5. Thanks for this article – it puts in print what many of us are thinking but cannot get the same range as your readership! On to the next step = how to ensure that the preliminary (and any other) trials are unbiased!

  6. So nice that I've been censored. I had posted new information from the Globe and Mail today of the MS Society announcing $1 million in funding for trials and it was deleted. Is it because it counters this story?

  7. Good article. The 2nd last paragraph says it all. If we have a blood flow issue, it should not matter whether you have MS or not!

  8. Our Federal Health Minister is in over her head in this position. Don't look for leadership from her; she doesn't have the skills or the knowledge or the backup to lead anything. She doesn't have what it takes to be a Federal Cabinet Minister. She would better serve our country as an MP where she could spend some time learning the ropes. She is not the only person ever to be elected and incompetent. There are too many in our governments, but to me, right now, this is a most glaring example.

  9. this idiot woman should be mopping the floor of a Wal-mart, not sitting in government.

    • Right on – I am so frustrated and irrritated by her, she just makes me so sick. It would be if her or a loved one came down with the disease, she then would be speaking a whole other story.

  10. Terrific article Ms. Kingston, please keep reporting on this issue.

  11. Many Canadians watch our loved ones continue to suffer from this dreadful disease. Anne Kingston has given us hope that people in a position to make a difference support what we are asking for – a speedy trial process to evaluate the Liberation treatment, not by quoting three articles that do not support it, but by quoting the many that do. Thank you, MacLean's

  12. Thank you Ms. Kingston. Why has it taken so long for someone like you to step forward and set the record straight? Our fight has been originally with the Canadian MS Society which then our own Canadian government joined the Canadian MS Society. THEN big pharma quietly joined the Canadian MS Society and our Government. I will refer to these groups as the Nay Sayers. People with CCSVI do not have the health, the resources and the stamina to fight the Nay Sayers. They are a huge body of negativity, fear monger and just plain financially motivated bullies. BUT we have and still are giving our all in this most unnecessary fight. The possibility of the Nay Sayers who still to this day feel we are of no worth and have idiotic ideals are only making them selves look like this. We have a right to have a better quality of life as the Nay Sayers do but this is thrown back in our faces and spat on as well. They have no compassion or ethics anymore and they hope we all will just go away. I AM WITH CERTAINTY SAYING I WILL NOT GO AWAY. The Nay Sayers will have to answer TO ME why I am being discriminated against. Why I am being denied health care as they are privileged to receive. Why am I being told misinformation and absolute garbage and that is OK? I have rights as the Nay Sayers do and I want to hear why I am being denied this. I already know why but they have yet to figure these answers because of course they have to look like Heroes and Saviours. They are a fraud and have tried their hardest to hide this under the carpet just like the breaking news as of November 21, 2009. These deceivers knew of this breaking news and figured that we are of no importance and lack of knowledge we have this will go away and forward they will proceed in their greedy and sociopath ways. The CREDIBILITY is garbage to me and I hope many others too. I want no association with such people. They are bad for my well being and are truly killing me slowly. I want justice and JAIL time would be my justice. Money is not my issue justice is. I want no involvement with a financial return that would drown this and never be resolved. True justice is what I want to see. Thank you for letting me have a voice.

  13. Geez ,Leona do you think that the MS patients that have had CCSVI treatment wasted their money? Come and visit my son who had the procedure done in June.Talk to him and the hundreds that have had it done and the difference it made in their lives.If you keep listening to the people that are receiving money from the pharma drug cartel, it is going to cost you in the next election. I cant believe a wealthy lawyer with MS hasnt taken the discrimination issue to court yet.I have 3 stents in my heart that have kept me alive for the last 10 years. Thank god you guys arent still doing studies on them to see if I really should have them.My son has 3 stents in his left jugular vein that I know will keep him living a quality life thanks to a surgeon in Albany,NY. Start looking for another job,honey.

    • There is a discrimination lawsuit coming.

      For all those interested in bringing the liberation treatment to MS sufferers in Canada, please visit:
      http://www.angioplastyforall.com

  14. She's along for the ride regardless of the outcome to Canadians. It's her 15 minutes of fame in the government as a token to the female Inuit community of Canada. Can anyone find any information on whether or not she has a post-secondary education?

  15. Hy,

    My name is Arnoudt and after getting my Liberation treatment for my CCSVI back in September, i feel like i live on top of the world. Not being able to walk for more then 100 meters the last couple of years, and move myself in a wheelchair, i nowadays walk without a cane for more then 2 kilometers. And still improve every day. My wheelchairs is sitting in my garage doing nothing.

    I am so happy, i cannot discribe it in words. I must thank al the staff in the clinic from Privatescan in Dusseldorf. I can reccoment this treatment to all MS patiet who have been diagnosed with CCSVI.

    Thank You Dr. Zamboni !!

    Arnoudt

  16. I was diagnosed with Multiple Sclerosis back in 1983. I can hardly walk now and it seems my condition worsens every day. When I first heard about the Liberation procedure and its results from a friend, I thought United States would be the first to conduct the trials. I could never imagine the corruption involved. I ended up applying for this simple procedure in Poland and waiting.. The other options were to get it done in India. After researching the internet extensively, I came across http://www.ccsviclinic.ca/ . They are screening for CCSVI in Fargo, ND and have very affordable packages for the Liberation procedure in India. I called (404)461-9560 and spoke to their nurse administrator Lisa whose priceless support made me realize that we are not alone in the fight against MS. They are screening within the US and Canada, their medical travel package includes flight arrangements and help with the visas, world class accommodation and meals within their hospitals, the liberation procedure, a stent if needed, medications necessary, a site-seeing tour, Pre-and post-procedure supervision, Full medical file including copies of charts, screens, CDs of Venograms, blood work, EKGs, etc. Post Procedure Screenings, follow-up and consultation with surgeons for the next 6 months and so many other provisions Lisa told me about, I can't recall however you might be able to find out more on their site.. http://ccsviclinic.ca/?page_id=564 . They are providing all of this at just $13000 as compared to the other companies that charge something like $20000 just for the procedure. You may also contact Lisa by emailing her at apply@ccsviclinic.ca or calling her on (404)461-9560. I am getting liberated mid- November and I am so very thankful to everyone at CCSVI Clinic for making this happen!

  17. Colette conlon Quanduk
    I meet the criteria for CCSVI procedure confirmed by Dr.S.McDonald, Vascular Imaging Clinic in Barrie and I am furious that the Canadian Government are dragging their feet on this. It's a no brainer if my veins are collapsed, twisted or clogged should it not be up to a doctor to say if this procedure is neccesary not our Canadian Government or is it about money!!!! Please visit.." People With Multiple Sclerosis Need Help"…on Face Book and like and comment lets get enough people together to take the Gvernment out of this decision M.S.Sufferers have had enough!

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