Saskatchewan goes rogue on CCSVI clinical trials

Brad Wall: ‘It’s a good day in the province of Saskatchewan’

by Anne Kingston

Yesterday Saskatchewan Premier Brad Wall left the Canadian Institute of Health Research (CIHR) and the MS Society of Canada in the dust when he announced his government has allocated $2.2 million for 86 multiple sclerosis patients in Saskatchewan to participate in Phase II clinical trials into chronic cerebrospinal venous insufficiency, or CCSVI, currently underway in Albany, NY. (Phase II trials consist of randomized treatment in a clinical setting, as opposed to Phase I trials, which research the safety and efficacy of a drug or procedure.) Applications, which will be accepted until Feb. 24 from patients who fit trial criteria, will be chosen randomly. Results from the lottery, one destined to be oversubscribed, could be announced as early as March. “It’s a good day in the province of Saskatchewan,” the premier said at a press conference, adding that very few residents of his province, which has one of the country’s highest incidence of MS per capita, have not been touched by the disease. He also noted the FDA has approved the Albany trial, the largest double-blinded study yet into the venous angioplasty treatment for MS pioneered by Italian vascular specialist Paolo Zamboni.

Anyone following the tortuous politics in the battle for CCSVI clinical trials in Canada over the past two years couldn’t help but read the comment as a not-so oblique reference to the fact the CIHR, which did an about-face on a previous decision not to fund clinical trials last year, has yet to announce its research team into Phase I trials (Phase II trials aren’t on the radar). Or that the MS Society, which allocated $700,000 into ongoing studies reviewing only the efficacy of CCSVI scanning, not treatment, has not exactly been a trailblazer on the issue, one that has dominated MS-patient activism in the past two years.

In sending Canadian MS patients to the U.S., after failing to get a home-grown trial off the ground, the premier is also debunking any myth that Canada is “a leader” in CCSVI research. Though the Albany trial is expected to take two years, Wall is already strategizing. While saying he didn’t want to get ahead of himself, the premier did allow that “if we find any symptom relief for MS, treatments that work for the many who suffer—the 3,500 plus in this province—I think it will be incumbent on the province of Saskatchewan to provide those proven and efficacious treatment to those patients.” Those are compassionate words. They’re also fighting words, suggesting that Saskatchewan, the home of once-universal Canadian health care, could also be ground zero for furthering CCSVI science—and possibly providing new treatment for a mysterious, incurable condition that afflicts so many Canadians.




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Saskatchewan goes rogue on CCSVI clinical trials

  1. Yes this is a good day for all MS/CCSVI sufferers!  Brad Wall is a REAL leader.  He has compassion and common sense.  Thank you Sir for stepping up to the plate and being a voice for us who have been trying so hard to be heard since November 21, 2009.  My tears are flowing for those lucky enough to get the priveledge to be part of this exciting NON DRUG therapy.  I wish all Canadians had this chance.  Time is not on my side and I am HOPING this will be less than two years … I have a good feeling it won’t be!  

    Dear Minister Leona Aglukkaq PLEASE lift the ban on those who want to help us.  We need the specialists trained properly when the time comes to for us to receive CCSVI treatment in our own country.  For the tax payers … please do not worry on the cost of this procedure.  The taxpayer will be saving many millions on the reduction of just the drug therapies alone!  I am sure not many taxpayers are aware of millions we pay to help MS sufferers who use drugs that now can cost up to $48,000.00 per patient per year and do not give relief as they should.  I am sure the insurance companies would love this as well! Shirley Renshaw.

  2. Excellent Article and News from Saskatchewan!!!

  3. Kudos to the SK Government.  Obviously, they were able to look past the self interested advice of the conventional ‘MS Establishment’ to gather both sides of the story.  It’s unfortunate that treatment trials involving a large number of Canadians with MS cannot be done in Canada.  That we have to send subjects to an American Study highlights everything that is wrong with our health care.

  4. Kudos to Premier Wall.  He has assessed the situation in Canada, and what the federal government is proposing, in a realistic manner.  His realism has resulted in the only option available in Canada - send Saskatchewan residents to the United States to participate in a viable clinical trial.  This action illustrates a failure of the healthcare system in Canada and the lack of caring for Canadians with any illness, not just MS.  Canada is not a leader in CCSVI research.  The government’s proposal for clinical trials will not place Canada in the forefront of international research.  How simple it would have been not to discriminate against Canadians with MS, allow the testing and treatment for CCSVI and follow the patients to gather data.   

  5. This was originally announced on 23rd September 2011.  I am thrilled that it has come to fruition.  This the kind of action required across Canada.  The CIHR and Aglukkaq still have their heads in the sand.  The discrimination that people tagged with MS is abominable.  We would be treated without problems if we weren’t considered to have an incurable disease.  Ontario could well use the over $40,000.00 they have saved by my not taking drugs because I have already had the treatment.  
    The rest of Canada must perk up their ears and listen to the Science already out there!

    • Glad to hear that you are CRAB drugs free after the procedure. I am a MS sufferer too and am seriously considering the CCSVI procedure, but due to lack of financial means at this time, I have yet to avail of it. Since when have were you diagnosed with MS and what type is it RRMS, PPMS etc? When and where did you get the procedure done and at what cost? What were your symptoms before and after the procedure? Which drugs were you on before and which ones do you take after the procedure? Would you recommend the procedure to someone with RRMS? Sorry for asking so many questions, but, your response shall be greatly appreciated.

  6. I’m highly skeptical about the efficacy of this procedure. There has been no good evidence for it which is why the government has not been aggressive in pursuing clinical trials. I do, however, understand people’s desperation in this devastating disease and want to try anything. But, should this be paid by the rest of your community?

    • Guest . No good evidence??? You truly are a prized fool. before making blanket statements of this kind i would investigate a bit.

      • I have. The evidence is based on poor study design and poor statistics. Further MRI results seem not to have shown any decrease number of lesions implying continued disease process. There had been some mild symptomatic improvement in some patients (who were still conveniently taking their MS medications) but this is measured over a short period of time. If you know anyone who has MS often it has a waxing and waning course which could explain that.
        There is nothing more that I would like than a cure for this disease. A cure for our loved ones. Unfortunately dumping that money is just a cure for a fat wallet.
        Before you insult people, I would advise that you look in the mirror.

        • Hi Guest:

          There is definitely a ssignificant cost to this trial, as there are in all clinical trials.   There are many failed trials for cancer, AIDS, etc.  The public doesn’t weigh in on those because they are done without the public attention.

          I have MS and don’t believe that the liberation therapy is a cure for all.  There has been enough clinical evidence to show that it significantly relieves the symptoms for some.  There is a woman in my MS Support Group who had it and is now mobile after 10 years in a wheelchair.  She is able to exercise, her cognition is better, her fatigue has left, etc.

          MS needs many therapies, just as say breast cancer has many therapies because the disease attacks individuals in different ways.  This one therapy, when provided to the patients who it will work for will save the government millions as right now the prescription drugs that most MS patients are on cost around $1500 a month, a large part which is paid by pharmacare. 

          I know there is so much conflicting information out there – but that’s why a trial like this should be applauded.  It will not rely on anecdotal evidence, and all patients will be operated on using the same procedure.  Currently the procedures being done around the world are not all following the same protocol which also is a reason for differing results.

          I appreciate that the public does not want money spent on something that has not proven to give consistent results, but even my neurologist, who is very conservative and is not convinced we are ready to move forward agrees that there is something to this. 

          Cancer treatments have come from similar such trials, as have AIDS treatments.  MS patients just want the same chance.  Especially since this procedure (or very close to it) is being done every day on vascular patients.  Screening people to see if their veins are blocked, and offering this treatment is a small price to pay if we can find the group of MS patients that this will work for.  And hey, if it works for a lot of us, it’s even better.

          Thanks,

          • Thank you for your thoughtful and well written reply Addy to Guest. Guest sure writes like a neurologist who also needs to look in the mirror with some compassion if possible.

        • Please be aware that the procedure for CCSVI is not a cure and was never touted to be one.  One must do their homework and get the facts correct.  I have been thrilled with my outcome, saved OHIP $40,000. since 2010 and can maintain my house again.  Far cry from heading into assisted living.

        • guest, I feel a need to inform you that there is absolutely no treatment available for those labelled with “progressive” forms of MS.  When you say “a waxing and waning course” I want you to be aware that this is not the what happens for Primary Progressive and Secondary Progressive cases.  There are no disease-modifying drugs for them, they are only supposed to get worse.

          I have been Secondary Progressive for 20 years with only “waning” for my condition until venous angioplasty treatment that improved many symptoms.   Some say it might be “placebo” but if that can restore balance, decrease drop-foot, take away heat intolerance, and stop weekly headaches then that’s pretty miraculous!  It’s been 10 months now.  I personally believe it’s because proper blood flow has been restored and I’m glad that Brad Wall thinks people with MS deserve proper blood flow like other Canadians!

    • …”now almost 3 years after venoplasty, and 4 years since starting an Endothelial Health program. (http://ccsvi.org/index.php/helping-myself/endothelial-health) He’s working full days, traveling, biking, hiking, no MS progression or new lesions, reversal of gray matter atrophy, no more heat intolerence, no more crippling fatigue, no more spasms, much better bladder. He sleeps well, dreams at night again, wakes up refreshed and in a better mood. ”
      ~ with respect and credit to the original Author.
       
      Bravo, Premier Wall, Bravo!

    • Hi  guest,
      We just came back from Egypt, where my friend just received CCSVI treatment. He has PPSM and he was in very baad condition. He is still confined to wheelchair. But after one day followoing the surgery he is able to swallow his food, drink without choking on it. He is able to controll his speech, he can speak with normal loudness and he also can whisper. What are this if no results. His mother said that now she can normally rest without worrying that in the morning she will find her son dead because he choked during night.
      For them it was a useful and worthwile treatment.
      We are just very sad that in Hungary the doctors and the scientific communitiy still shares your opinion and does not want to make any steps toward accepting CCSVI in MS. 

    • Taxpayers are paying for our CRAB drugs which have little evidence to show they help. The cost of a venogram and angioplasty are 6,000 in Albany, much less than the 78,000 a year taxpayers pay for just my Copaxone.

  7. Thank you for another wonderfully honest account, Macleans!! 

    All other Premiers – please follow in Premier Brad Wall’s leading footsteps and move the rest of Canada forward on CCSVI.

  8. Have to add another comment now that the byline has been fixed :) .  I knew it had to be Anne Kingston who wrote the wonderful “Saskatchewan goes rogue on MS clinical trials” article!!   We are so grateful for Anne’s ongoing, truthful reporting on the CCSVI situation in Canada which looks like it is finally going to move forward thanks to Saskatchewan’s Premier Brad Wall. 
    Many, many heartfelt thanks to Anne and Macleans – for keeping the accurate facts on this issue front and centre in the news, while others have sadly skewed the truth. 

  9. I will never understand why the MS Neuro’s who are running the MS Clinics can in good conscience deny any MS’er the opportunity to restore proper blood flow from the brain to the heart. It only makes sense that if blood flow is compromised (for what ever reason) that this would manifest into a negative health condition.

     The MS Neuro experts have never been able to explain this disease or provide any treatment that eliminates any of the most debilitating symptoms. The drug treatments are only recommended for relasping/remitting, never for progressive. They can’t prove if the drugs slow relaspes or if it is just the natural waxing and waning course of the disease. The drugs studies are all supported by Pharma money and we all know the results can be presented in a favorable light and then further supported by the MS Neurologist that receives compensation from the Pharmaceutical companies providing these drugs. Funny how the independent studies (ie Cochrane group) who do not receive compensation from Pharma report that the drugs give no measurable benefit.

    If venoplasty happens to improve any symptom for pwms then they deserve to have the opportunity to pursue this treatment. CCSVI treatment should not be held to a standard of perfection…the drug treatments certainly are not yet the Neuro’s push one drug after another knowing full well that they will not improve their quality of life and may even degrade it further. As time goes on and the studies are done and people are treated they will learn how to improve the treatment and hopefully understand why veins are different in people diagnosed with MS.If CCSVI treatment was bogus, do you not think that the MS’er themselves who have received treatment would have buried this a year ago. Quite the opposite has happened.. It seems to me that if the Neuro’s and the MS Society had the best interests of the MS patient in mind they would be fighting for this treatment and for their patients lives, or at the very least for proper studies by vascular experts. Sadly the people who suffer with this disease have to not only fight their disease they now have to fight against the back room politics and self serving interest of the organizations that are suppose to help them. It has now become very hard to trust the medical profession especially the doctors who think they own MS.Thank you Anne for taking the time and effort to understand the truth and have the guts to publicly  report it and thank you to Premier Walls for having the guts and compassion to help Saskatchewan MS’er while the other provinces continue to listen to the wrong people.  

  10. I will never understand why the MS Neuro’s who are running the MS Clinics can in good conscience deny any MS’er the opportunity to restore proper blood flow from the brain to the heart. It only makes sense that if blood flow is compromised (for what ever reason) that this would manifest into a negative health condition.

     The MS Neuro experts have never been able to explain this disease or provide any treatment that eliminates any of the most debilitating symptoms. The drug treatments are only recommended for relasping/remitting, never for progressive. They can’t prove if the drugs slow relaspes or if it is just the natural waxing and waning course of the disease. The drugs studies are all supported by Pharma money and we all know the results can be presented in a favorable light and then further supported by the MS Neurologist that receives compensation from the Pharmaceutical companies providing these drugs. Funny how the independent studies (ie Cochrane group) who do not receive compensation from Pharma report that the drugs give no measurable benefit.

    If venoplasty happens to improve any symptom for pwms then they deserve to have the opportunity to pursue this treatment. CCSVI treatment should not be held to a standard of perfection…the drug treatments certainly are not yet the Neuro’s push one drug after another knowing full well that they will not improve their quality of life and may even degrade it further. As time goes on and the studies are done and people are treated they will learn how to improve the treatment and hopefully understand why veins are different in people diagnosed with MS.If CCSVI treatment was bogus, do you not think that the MS’er themselves who have received treatment would have buried this a year ago. Quite the opposite has happened.. It seems to me that if the Neuro’s and the MS Society had the best interests of the MS patient in mind they would be fighting for this treatment and for their patients lives, or at the very least for proper studies by vascular experts. Sadly the people who suffer with this disease have to not only fight their disease they now have to fight against the back room politics and self serving interest of the organizations that are suppose to help them. It has now become very hard to trust the medical profession especially the doctors who think they own MS.Thank you Anne for taking the time and effort to understand the truth and have the guts to publicly  report it and thank you to Premier Walls for having the guts and compassion to help Saskatchewan MS’er while the other provinces continue to listen to the wrong people.  

  11. I will never understand why the MS Neuro’s who are running the MS Clinics can in good conscience deny any MS’er the opportunity to restore proper blood flow from the brain to the heart. It only makes sense that if blood flow is compromised (for what ever reason) that this would manifest into a negative health condition.

     The MS Neuro experts have never been able to explain this disease or provide any treatment that eliminates any of the most debilitating symptoms. The drug treatments are only recommended for relasping/remitting, never for progressive. They can’t prove if the drugs slow relaspes or if it is just the natural waxing and waning course of the disease. The drugs studies are all supported by Pharma money and we all know the results can be presented in a favorable light and then further supported by the MS Neurologist that receives compensation from the Pharmaceutical companies providing these drugs. Funny how the independent studies (ie Cochrane group who do not receive compensation from Pharma) report that the drugs give no measurable benefit.

    If venoplasty happens to improve any symptom for pwms then they deserve to have the opportunity to pursue this treatment. CCSVI treatment should not be held to a standard of perfection…the drug treatments certainly are not yet the Neuro’s push one drug after another knowing full well that they will not improve their quality of life and may even degrade it further. As time goes on and the studies are done and people are treated they will learn how to improve the treatment and hopefully understand why veins are different in people diagnosed with MS.If CCSVI treatment was bogus, do you not think that the MS’er themselves who have received treatment would have buried this a year ago. Quite the opposite has happened.. It seems to me that if the Neuro’s and the MS Society had the best interests of the MS patient in mind they would be fighting for this treatment and for their patients lives, or at the very least for proper studies by vascular experts. Sadly the people who suffer with this disease have to not only fight their disease they now have to fight against the back room politics and self serving interest of the organizations that are suppose to help them. It has now become very hard to trust the medical profession especially the doctors who think they own MS.Thank you Anne for taking the time and effort to understand the truth and have the guts to publicly  report it and thank you to Premier Walls for having the guts and compassion to help Saskatchewan MS’er while the other provinces continue to listen to the wrong people.  

    • Hi there Beaner10!Your comment is exactly what I have been saying … word for word! This comment covers all the bases and I sure would LOVE to see this proven wrong! Which they can’t and won’t!Thank you for speaking for me and thousands of others who have the misdiagnosis of MS. Who are being blatantly discriminated against because of that awful label of MS. No other doctors will see us once we disclose that we have MS. That shows how much of a strangle hold the MSSC and their associates have on us. They have influenced the government as well … if the government has an issue with a pwMS who do they ask … the MSSC. This has to change there is no reason why all consultation has to be done with the MSSC first. We have other health issues which are not MS related but once again that strangle hold takes over. I cannot believe for over 20 years I also listened to the MSSC and was convinced nothing can be done … so go home. I am so angry for being deceived all these years when there could have been something else done all along. I certainly would not be stuck in a wheelchair as I have been for 10 years. This is a large part of our symptoms … concerning the vascular system. Relief is what we need and we are being refused this because of the MSSC and their associates. THIS IS DISCRIMINATION. Period.

  12. Gongrads to you – Brad Wall!!!!!!  Here in ONTARIO our fearless leader DALTON MCGUINTY can’t even spell CCSVI (his head is too far up his rear-end)

  13. Thank you, Anne Kingston for telling it like it is!  I am very proud of Premier Wall and Saskatchewan while at the same time being ashamed of Canada and the MS Society of Canada.  This is the ONLY treatment that has demonstrated improvement in symptoms.  

    The approved disease-modifying drugs can only claim that they “might” reduce the frequency or severity of attacks and this is only for relapsing/remitting cases that are totally unpredictable any way.  There is no treatment for progressive forms.  Since they are only supposed to deteriorate it should be easy to see if there is any improvement at all and that has been happening!  I know this works because I’ve had it and I want it available to everybody who wants it!

  14. This is AWESOME news!  It gives my wife, who has suffered with this for the last 12 years, a HUGE boost in knowing that there IS someone out there that really does care and understands what and individual with MS and their loved ones goes through on a daily basis. Once again, Saskatchewan is showing Canada how to look after it’s residents.  Way to go Mr. Wall!

  15. I have heard comments about it being unfair for people with MS to expect taxpayers to foot the bill for this treatment and I feel compelled to say that this is not a financial issue.  Most Canadians with MS would be happy to pay for this procedure themselves in Canada, where it would cost a lost less and be so much more convenient.  Instead, sick people are being forced to travel at great discomfort for a treatment that is available in Canada as long as you’re not labelled with the MS mark!

  16. I read that it took doctors about 30 years to get on board with anesthesia , even though the benefits were well known.  They even operated on fully awake children . It took WW2 to solidify the process.

    Here again is a simple oft-used procedure readlily prescribed for cardio patients , which costs a mere $1500 in Canada . Hundreds have come back from foreign countries with tales of great relief. What’s the problem with our medical hierarchy ?? Are they arrogant or just stupid ?

    • I am sorry to say Tedl that the MS Society of Canada are the culprits who are road blocking and yes … using arrogant neuros to reinforce their tactics.  Stupid is too harsh a word … LOL!

  17. Thank goodness he has seen fit to bypass the necessity to go through the phase I process. It is a shame however that no one in Canada is actually planning treatment locally. Most people need to be diagnosed, treated and followed up in their own locality. We all know that (at the moment at least) there is a high level of restenosis which needs to be dealt with on a local basis. It is hard work travelling hundreds of miles when you are suffering from MS.

  18. for anyone who wants to see personal testimonials from those who have had this procedure done,
    (angioplasty) – check U-tube online under CCSVI, liberation. Many there with very positive, life changing results. 

    Had my veins tested two years ago, (four of five narrowed), know two others who have had this procedure done to correct. Wish that it could be me.

    My hope is that the cost of the drugs which don’t often do much, will motivate Health Canada to get moving with this treatment. Many are finding ways to go to Albany. Because often this needs to be done more than once, it only makes sense to have it done locally. One day it will.

  19. This is about the same funding level as the main Canadian MS research granting organization. They funded/are-funding 7 research projects for $2.3M total. They have likely just discovered the cure using stem cell implants in bone marrow following chemotherapy.
    I suggest more stem cell funding and wannabe SK and AB first utilize existing reserch programmes and methodologies; augmenting the best reserchers instead of trying a homemade inferior scheme. After the libration death I would’ve ceased funding it, without some sort of deductive guess as to why it would work (to weed out placebo effect).

    • 2.4 million BTW.

      Please educate yourself before using words like CURE and assuming that CCSVI is a placebo effect. One death that has not been confirmed on your assumptions. This NON DRUG, minimal evasive treatment is the only positive treatment that has come without the aid of the MSSC in over six decades. They use drugs that have shown less results and do nothing to help but mess up the immune system further.

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