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Brad goes to the Wall for MS miracle cure

COSH on the troubles with Paolo Zamboni’s “liberation therapy”


 

On Tuesday, the Globe‘s Patrick White discussed Saskatchewan premier Brad Wall’s announcement that he wants to set aside cash for trials of Paolo Zamboni’s “liberation therapy” for multiple sclerosis. White says that Wall’s audible “serve[s] up an uncomfortable nudge to political leaders elsewhere who have largely avoided the emotionally charged debate” over the Zamboni technique.

This is factually true. But the wording seems hard on our “political leaders”—most of whom have, and I’m just guessing here, avoided the “emotionally charged debate” because the debate is not really their business, but that of deputy ministers, health bureaucrats, foundations, and research establishments. To be sure, there is a place for improvisational, rapid-response policymaking at the top of the pyramid of state where justifiable public demand for it exists. But “the squeaky wheel gets the grease” is a dangerous maxim, full of moral hazard, and hardly a fit foundation for a system of funding scientific research. (Surely no level of hell can possibly be hot enough for opposition politicians who abuse a scientific controversy in order to establish their emotional bona fides.)

Wall’s moment of inspiration will have the effect, intended or not, of encouraging sufferers of painful, intractable illnesses like MS to besiege the Saskatchewan legislature directly with appeals for the latest internet nostrum-of-the-week. Nobody’s good intentions will stem that tide: let thy voyage unto Regina begin now, O ye with lupus, ye sore afflicted with fibromyalgia! Having conjured a research project into existence in the interests of anecdote-armed Victim A, on what grounds will Wall and his successors be able to turn away B, and C, and D?

It bothers me that Wall talks of the “hope” offered to MS patients by the Zamboni theory as if it were a virtue in itself; it seems to me that this is precisely what remains to be decided—whether the hope consciously cultivated by a handful of instant medical celebrities is fully justified, or whether it is an irresponsible, tragic delusion propagated for personal gain. It could well be either: the story of Barry Marshall reminds us that weird, unanimously heckled theories sometimes turn out to be true. The patients themselves can hardly help experiencing hope, though I rather admire the stoicism, evidently informed by experience, of one CBC.ca commenter (indeed, this may be the first cogent utterance ever made by any CBC.ca commenter):

This is the third “cure” I have seen for MS in my lifetime and it wont be long before it too is relegated to the scrap heap to lay beside the hyperbaric oxygen chamber and the snake farm. I still hope to see the one that works but this isn’t it.

How could anyone be so pessimistic? Well, even leaving aside the history of MS quackery and hype, there is no shortage of circumstantial reasons. The “liberation therapy” tag is an obvious mark of heavy con-artist and/or halfwit involvement in the publicity effort. Why not go all the way and just call the Zamboni technique “super amazing unicorn magic”? In newspaper accounts (and even in our own exemplary coverage), recipients of the therapy often report renewed energy without necessarily enjoying total relief from symptoms; this may not be a sign of the placebo effect at work, but it is certainly consistent with it. And it is hard to understand how the instantaneous improvements so often described by the “liberated” can possibly be consistent with Zamboni’s actual theory of MS etiology—i.e., that poor drainage of blood from the brain encourages, over a long term, the formation of cerebral iron deposits that then lead to immunological issues and demyelination of the nerves.

These things make you go “hmm”, and when you throw in the additions to the “hmm” list provided by a March review of the Zamboni theory published in Annals of Neurology, you start sounding a little like a downed power line. Zamboni’s study claimed to be able to distinguish the intracranial veins of MS patients from those of normal people perfectly. This is not a figure of speech: they claimed literal perfection. “They reported that only MS patients and not controls met the criteria for abnormal extracranial cerebral venous outflow. This observation perfectly overlapped with the diagnosis of MS, with a reported 100% sensitivity, 100% specificity, 100% positive predictive value, and 100% negative predictive value.” Major “hmm” points there.

The authors of the review also point out that Zamboni’s proposed etiology offers no obvious explanation for why women contract MS twice as often as men, or why incidence rates around the globe get larger with greater distance from the equator. They wonder why, if MS is a vascular disorder, it almost never appears after the age of 50. They ask why retinopathy and other known consequences of poor vein drainage aren’t statistically associated with MS. Perhaps most interestingly, they point out that sufferers of head and neck cancer have, for more than a century, been receiving a (horrifying-sounding but surprisingly inconsequential) treatment known as “radical neck dissection”, which involves, among other things, the total removal of the jugular veins. If Zamboni were right, one would have expected demyelination and MS symptoms to have been noticed in these patients immediately, or at least at some point since 1906.

There might be good answers to these questions, and, indeed, Zamboni’s angioplasty/stent approach might relieve MS symptoms for reasons having nothing to do with his theoretical ideas. But his treatment will have to do significantly better than placebo in proper trials, because angioplasties and stents come with known mortality risks. And if Zamboni and his advocates are to receive the benefit of all the hypothetical “ifs”—it might work for some reason we don’t yet understand!—then common sense demands that the “ifs” whose spear-points run in the other direction be considered: everybody who’s had “liberation therapy” might drop dead at midnight on New Year’s Eve for reasons we don’t yet understand!


 

Brad goes to the Wall for MS miracle cure

  1. At the risk of losing my pinko liberal latte swilling credentials that some have lauded me with… I must say Brad Wall is by far my favorite premier. I think he is an opportunist of the first order, and in this case I mean that in a good way.

    The case for accelerating research is fairly clear. The evidence that Zamboni's procedure leads to an immediate improvement of quality of life is anecdotal, but my impression is that it is much stronger than one has seen in the past for quackery. Certainly, MS advocacy organizations have come to that conclusion. The procedure is invasive, but my understanding is that it is not overly complex nor particularly dangerous. (Taken in context, any surgery can kill you)

    The case that Zamboni's theories about MS are correct is very weak. Indeed, the review article cited by Cosh seems to focus on that point. Given that, it is highly doubtful that this is a cure for MS, so we may be looking at perhaps a temporary improvement in quality of life or hopefully a delay in the onset of some of the more debilitating symptoms. The presentation of the medical authorities to the public is giving the impression that since they view Zamboni's theories as wrong, they are dragging their feet wrt the studies and treatment. I don't have a clue if this is factually true, but it is certainly the impression they are giving.

    So why Saskatchewan? Wall made a point in a CBC interview that the province has the highest incidence of MS in the country, which will be good cover for turning down the next request from advocacy groups. Perhaps more relevant is that Saskatchewan has transformed itself into a biotech leader leveraging its agri base, and resource wealth. This is a great opportunity to jump onto the world stage at a fairly modest cost.

    • Can't really agree with you Stewart. God knows our health care system is already overburdened as it is. Should we really be investing some of those precious dollars and resources in something that MAY "hopefully delay the onset of some of the more debilitating symptoms" of MS?

      I wouldn't want to be the Health bureaucrat who makes these decisions but, at some point, someone has to look at the cost/benefit of these things and say 'no'. Our inability to do so is one of the main reasons health care costs are so crazy out of control.

    • "a fairly modest cost." To Saskatchewan, yes. To the other provinces? Where do we draw the line? How many treatments with little to no evidence are "can't hurt, so why not" treatments? The aforementioned Hyperbaric Oxygen therapy can't hurt, might help. Same with any number of homeopathic/naturopathic/downthegardenpathic treatments.
      The problem is, can we expect a health acre system already stressed to absorb these additional costs with little to no assurance that they will improve the health of patients? I work in the health sector, and the elephant in the room is this: Your life has a dollar value. No matter the system or country, at some point, we can't afford to give you treatment. That's why we have scientific advisory boards, and evidence based decision making, and limits on what cancer drugs you can get, and in what circumstances.

      • … All those CCSVI patients will need appointments, prep time, transportation, hospital beds (potential space, in case of complications) follow-up care, surgical suite time, surgeon/nurse.pharmacy/assorted health professionals to do tasks to make these procedures happen. The techs, the floor space, and all coming at the expense of somebody else who may well be waiting for a procedure we fund because WE KNOW IT WORKS.

        • Indeed. I'm a Sask resident with three Sask-MDs in my family, and I can tell you that the vascular surgeons who would most likely be performing the angioplasties are overworked as it is.

          And I've got a feeling that the controls who get the sham angioplasties will come away feeling just as "liberated" in the short run as those who get the actual procedure…without the risk of, say, stroke associated with the actual procedure.

  2. I am generally disturbed by the idea of elected officials dabbling in disease politics, which must be one of the most emotionally charged (and thus correspondingly irrational) areas of public and private interest. No good can come of that.

    At the same time, I've always liked the idea (for no other reason than I find it intuitively pleasing) of setting up well-funded hubs of learning and research centred around single issues with determinable objectives. I loved the Canada Excellence Research Chairs idea (despite their obviously misogynist hiring practices), for example. I don't really like the ad hockery of this decision, but I would be amenable to, say, all the provinces got together and each committing to dumping wads of cash into a particularly fraught area of medical research of their choosing.

    • Oh boy, Sir Francis is going to lambaste me for the grammar in that comment. Just atrocious.

  3. Other than this commentary by Colby, I have to give the MSM a fail on the coverage of this topic. They have tried to sound a cautious note, but no effort has been made to describe what is known about MS and how it contradicts the effects of this treatment.

    "Zamboni's angioplasty/stent approach might relieve MS symptoms for reasons having nothing to do with his theoretical ideas"

    This is an important point. Relieving symptoms (whether temporary or not) is not a cure. In the case of MS, this relief will likely not halt the progress of the disease.

    Should this be investigated further? Absolutely. Should Canadian governments be funding a true full study? Absolutely not. We do not have enough cash to throw randomly at "hopeful" techniques. Paolo Zamboni has to put forth solid scientific evidence that can be "peer reviewed" before any government funding is committed.

    • Might 'this' have been left alone by medicine, encouraged for years by pharmaceutical companies, for years because there's no profit in such a cost effective fix? Could it be – especially for right wingers – that if every MS sufferer had his operation, the savings in drugs would be phenomenal for each province? Might it be that the other parameters that you discuss are interesting – and perhaps even valid – and who knows why they exist, but really, who cares if this treatment works? If you were an MS sufferer – an otherwise fit young person – would you not want the chance? And the chances are that the only chance you have is through your medical plan. Because by the time your MS has been diagnosed there's a good chance that you will already have lost your job and be suffering economically too. And perhaps be a single parent.

      This is absolutely the sort of issue that we desperately need politicians to grapple with. Because as it stands, no-one out there with any clout is championing the rights of the disabled. Which cost the government hundreds of thousands of dollars. We'd be churlish not to give this method a try. What do we, the disabled, have to lose? Why is it 'a bad thing' that the results look so good? Maybe the stats that would come out of this action would be an excellent indicator of whether this 'works'? The only people who stand to lose – billions of dollars – are the pharmaceutical companies. Gutsy provinces are a) exactly what the disabled – also constituents – need desperately and b) the provinces stand to gain hundreds of thousands of dollars.

      What was the problem with trying it? Hmmm…

  4. On the one hand I'm skeptical of miracle cures generally, and squeamish about a premier joining in on the "hope."

    On the other hand, MS sufferers facing slow degradation into infirmity correctly point out that angioplasty and stents are fairly routine procedures for other illnesses, probably too routine since there is evidence of over enthusiasm for treatment with stents by cardiologists. So in the messy world of actual medicine vs. research does it matter that much if MS sufferers get a potentially unnecessary stent instead of a heart patient?

    More study would seem to be a reasonable way to go, especially on the prairies; although maybe we could also spend more money on figuring out why the incidence is higher there.

    Wall is going to experience short term gain for long term pain, politically speaking, though, because once the inevitably small group of participants is selected for the study, and everyone else is left waiting for results, he'll be under pressure to unveil a new miracle of hope.

    • re: higher incidence rates in Sask.

      MS is an extremely odd animal. It really does affect people who live further from the equator, but incidences in Inuit are extremely low. It tends to affect caucasians most, and asians almost not at all. Women tend to get it far more than men, but men tend to get the non-relapsing variety in far greater numbers. It sometimes can be triggered by environmental factors, but also can be genetic.

      Trying to find out why incidence rates are higher in Sask. might not be so easy.

      • My understanding is that there are spikes in areas of intensive agriculture. Manitoba too, not just Sask.

        • And apparently it also affects Northern Europeans quite a bit as well (such as Scandanavia – where there is not much agriculture at all).

          It's a very strange animal indeed.

          • Just on a whim, I googled "pesticide use by country", where I found that the Netherlands was high on the list. Is it possible that regions where pesticide use is high also experience higher incidence of neuromuscular disease?

          • Hard to say, but MS is not a neuromuscular disease, rather an inflammatory demyelinating process affecting white matter in the CNS exclusively.

  5. Another factor in all of this is that there is a pretty big incentive to the pharmaceutical companies to maintain the status quo. Interferon drugs really do slow down the progression of MS and can stretch the time between relapses by quite a bit. (18%-40%)

    That these drugs cost between $16,000-$20,000 per year means that they make quite a bit of money for the pharmaceutical companies (add to this that the patents on these drugs were extended by 10(?) years by the recent American Healthcare Act means that cheaper generics are still a ways off).

    I don't want to sound all conspiracy theoryish – but the fact that the status quo is profitable for some pretty well-connected entities is a factor that should not be discounted.

    • "…is a factor that should not be discounted."

      Please be specific. At what point in the process will this come into play.?
      "Should not be discounted" could mean a researcher subconsciously making a decision on which research to follow all the way up the big pharma hiring black helicopters to assassinate Zamboni.

      It's a dangerously nebulous statement that is open ridiculous levels of interpretation. If you are alleging a potential for the profit motive to impair the scientific process here, be specific, or risk being lumpend in with the conspiracy theorists.

      • To be specific: I think that we should continue to have a healthy level of skepiticism about miracle cures. But we should also be leery of the influence that those with a financial stake in the status quo can have in the discussion (I don't think it's particularly tin-foil hatty to draw attention to the obscene amounts of money that pharmaceutical companies spend in lobbying).

        Calm down my friend, there's a whole lot of venom lurking in your words. Like you, I too have a loved one with MS, however unlike you, I am only beginning to grope through this new world (and mostly in the dark – I have no experience in the health sciences).

        cheers.

        • My apologies if my frustration overwhelmed my politeness, I spent years working in communications for a large health charity. I can't count he number of times I was accused of working for some giant conspiracy by the pharma-corps. All this while making about 35k a year with no overtime because I was a "true believer" in the mission of the charity.
          Pharmas spend a crapload on advertising and lobbying. But I'll tell you something about MS. If there is some credence to the Zamboni theory, my guess is that it will only work on one of the sub types. There's research out there that uggests that MS is actually 3 or 4 slightly different animals, and the pharmas all know this. I suspect they already have an "everybody over to THIS drug" plan ready to go.
          But the research machinery in canada is pretty open. The journalling process is fairly tight, and crap research doesn't get published…much. There are no shortage of researchers who will reveolt against any undue pharma influence. As to lobbying? If a few dozen can kill the census, why bother with lobbyists at all?

          • No worries, I've been known to lose my inborn Canadian politeness as well from time to time :) I see where you're coming from and understand your frustrations, and yeah, I would be shocked if there wasn't a Plan B for the pharmaceuticals already in place.

            That being said, I have very little idea of how the public/private research nexus actually works in Canada. What I was drawing from was the manner in which the tobacco lobby was able to gum up the works so ably in the 1980s. Not that I think the pharmaceutical companies are pure unadulterated evil like the tobacco ones are – just that they have a very large incentive treat disease instead of cure it and they have the financial wherewithal to often dictate the terms of the debate.

            Back to the original point – I have serious reservations about the zamboni technique (I suspect any good Canadian would…what with it being named after an ice resurfacer :), but I'm also leery of those who dismiss it out of hand.

            And now I'm off to enjoy the glorious late afternoon weather – if i don't reply, rest assured it's because I'm AFK (as they used to say in the 90s) and not because I'm not enjoying this fruitful discussion (because I am!)

          • Oh, I can see the logic for being suspicious about pharma trying to put the hold on unprofitable research, but for all their cash and lobbyists, there are a finite number of spots where they can insert themselves.

            Having a fair bit of experience, both internal and external, of following research along the food chain, it's pretty hard to gum up the works of research. The spot where they usually try is in delaying the release of results of studies, or attempting to censor aspects of a study through claims of proprietary info. But even these attempts inevitably stumble. I will say that the most effective MS meds on the market now are closing in on their patent dates, and there's nothing new on the horizon, at least say my friends in the biz. At this point, the financial impact of a cure for MS is less of an issue to the pharmas than it might have been.
            As you say, though, research is always good, and I never dismiss anything out of hand. can't afford to. Just best to follow the normal research procedures, and make it prove it's worth all the way through the process.

            Long weekend, huzzah!

  6. The scientific bureaucracy can work even slower than the government bureaucracy. There's nothing wrong with elected politicians responding to the concerns of their constituents to give a prod and a poke to the medical research community to, you know, give us some definitive answers on this.

    • Agreed. Policy should never be 100% politically driven, but I also don't think it should be 0%. Governments get to set priorities, and if they want to make this a priority than I'm fine with that, as long as they respect the science.

  7. "Surely no level of hell can possibly be hot enough for opposition politicians who abuse a scientific controversy…"

    The provinces are worse, Colby…
    – Progressive Conservative MPP Christine Elliott (Whitby-Oshawa). “They should be proactive in dealing with a situation that holds a lot of promise.” MS is a degenerative disease and patients can't “sit around and wait for years” for the research to be completed. The government should step in and help fund research, she said.

    My wife has MS. She'd like a moment with all these folks to remind them that we work on evidence here. She'll happily undergo this treatment, when and if it turns out to be both safe and useful. She writes a mean letter, and if there's any shame left in the world, a handful of politicians should be feeling it shortly.

    • I actually did link to Elliott's comments. Because of our web-standards-noncompliant way of indicating hyperlinks, there are two different links there in consecutive words where there ought to be one. But surely Carolyn Bennett is, as a medical doctor AND MP, in double jeopardy of the flames here? Is she staking her MEDICAL reputation on the value of this therapy?

      • Oddly enough, I've just tweeted at her on this very topic, as I am also curious to know Bennett's full response.

        Not that a tweet should ever be considered equal to a real conversation, mind you.

      • Bennett is a disappointment on this one, indeed. I'm with you on your damnation policy here, Colby and this issue transcends party politics. Dr. Bennett will be getting a letter from my wife, along with the the rest.

        But from a service delivery model, the provinces are where the rubber hits the road, and they're the ones that will or won't offer the service to MS patients. Thus, I'm actually more upset with Wall and with the ontario 2nd and 3rd parties. I mean, would the Ontario PC's be okay with building a new car plant in Windsor beacuse we really need the jobs and don't want to wait , never mind having no actual research to back it up? I think not.

        • The politics on this one are pretty clear though. A few policy wonks like us might be disappointed in Wall's move and the posturing of other politicians mentioned above. But it's not exactly a vote changer for the average person.

          A lot of people with MS and their families on the other hand are desperate for a cure. They'll be thrilled with any politician who goes for it and furious towards any who express skepticism. There may be exceptions like MostlyCivil and his wife but they're not nearly likely to be as vocal as the “liberation therapy” advocates (and I agree with Colby Cosh that the name should ring alarm bells).

          It's the same kind of dynamic as gun control: the people who feel strongly about it feel REALLY strongly about it and are like dogs with a bone, while for most other people it's just one of many issues.

          • It's true…most of the folks in the MS community we know are being quiet and waiting it out. A handfull are in full voice, protesting and flooding the net. There's only a couple of us willing to take on the worst of the misinformation, and it's a losing battle. I used to do it as a job, so I guess the habit is hard to break. Too much time talking to research scientists, I guess.

      • Carolyn's comments, complete with word truncations (appears to be notes from a presentation) have now been posted on her website.

        In short, my reading indicates that she wants a worldwide database tracking patients who've undergone the procedure, and the patient outcomes. It would also appear she supports government funding of such initiatives.

        Now, maybe I'm a complete idiot, but it would seem to me that having a worldwide database tracking test cases would require some version of an electronic health record domestically.

        Dear provinces, how are those electronic health records coming along?

        • MS patients, being well ahead of politicians and many others, are already working to develop and maintain that database. The reaction to this treatment is not all hysteria, it's a search for a working solution which does not pose the dangers so many of the drugs do (and has anyone investigated the research on which those treatment decisions were made, as opposed to just accepting that large-scale, unbiased clinical trials provided uncontested evidence that the benefits outweigh the dangers?)

          It is obvious that drug companies have an interest in funding research into drug-based 'solutions'; perhaps they also have an interest in discouraging/disparaging solutions which they cannot control and which may affect their profits. Just a thought.

    • People are suggesting that people/government step up and fund research, and you and your wife, who claim to want verifiable evidence, object? All anyone that I've read has suggested is that we expedite trials. This shouldn't be a problem, because the procedure has been performed for years for other conditions, and is known to be safe (so you and your can cross that off your list of reservations).

      I know that scientists, doctors, dentists, etc. all want to believe that everyone in their professions maintain the highest of methodological and ethical standards, but this simply is not the case. It's recently come to light, for instance, that big pharma has been fabricating or heavily skewing studies, then giving them to accredited researchers, who are paid to simply sign the final results as though they performed the trials themselves.

      • Joe, if were only that simple, I'd be applauding this research initiative. But like most things, this is quite complex. The short version? The Zamboni procedure is not far enough along in the scientific process to be considered for large-scale clinical trials.

        First, you need to prove that MS patients have blocked veins, and thaty have this condition at a higher level than the general population. That research is underway in Hamilton, Ontario. Then we go to clinical trials. If you're not going to bother following the scientific methodology, then don't pretend you're doing research. Sometimes, you have to wait for the results. Life isn't always fair.

        • There's another level to be demonstrated, and it's whether this supposed condition CCSVI actually produces clinically significant pathology. Anatomic variations are really not that uncommon.

  8. Oh yeah, remember the cure for diabetes back in the late 90's? Pancreatic islet cell transplants. The Edmonton Protocol? All that money quickly funnelled to this amazing discovery? Anybody?
    http://archives.cbc.ca/health/medical_research/to
    "Diabetics and researchers alike hail this discovery as the biggest step forward since the advent of insulin."

    Makes you wonder what all the money that went into this might have done elsewhere…

    • I'm the furthest thing from an expert on this, or anything else in the field of medicine, but if the government is going to jump the gun on funding something, I don't have any qualms with it being medical research. I'll leave it at that as that's my no doubt simplistic view of the issue.

      Also, very interesting topic Colby, have a family member dealing with MS right now, so any information/coverage of this is appreciated.

      • I'm not sure fast-tracking clinical trials for a dubious procedure, on the basis of a strong hope on the part of some citizens, counts as funding medical research. It's almost closer to funding faith.

        • That's a fair point on the clinical trials. Perhaps there's another avenue governments can get involved in before that step.

          • Ageed. That Saskatchewan has higher than average rates surely justifes some research attention.

          • Part of the problem here is that funding a Stage 3 clinical trail (humans) is, essentially, officially funding the treatment and waiting around to see if it works. The science here is secondary, and will take a back seat to expediency.

            I predict the Sask clinical trial will have approx 3500 participants.

  9. Somehow, this dovetails nicely with the shift of Stats Canada to Vague Hunches Canada, as Feschuk describes it.

    Positivism and evidence-based decision making are starting to feel like quaint artifacts from a bygone era.

  10. So the thing is, this will cost millions of dollars, right? And the treatment already exists, right? And Canadians are spending $10,000 to get the surgery elsewhere — which is a fair amount of dough for an individual, but not a great deal of $$$ in the long run, especially given quality of life and reduction of meds.

    So why doesn't Brad just pay for MS sufferers who are appropriate candidates to travel and have the procedure done?

    • Isn't there some Mexican cancer treatment that some seek out? Shouldn't they get money too? It's going to be hard to determine funding criteria for unproven treatments, what with the whole unproven thing and all.

      • Oh, I know Sean — I used to work for SK Health, and the formulary was part of my portfolio — it's pretty tough and takes a loooong time to get a drug or procedure insured. Cancer treatments — hope — chelation therapy — hope — I think all of medicine includes an element of hope, right?

        But formularies don't insure hope, they insure cures. That was always how they held out — ironically, I remember it also being about an MS treatment called betaseron, back when I was there.

        Brad Wall is a personable guy, but he needs to learn that policy should not be about his opinion, or based on people he talks to at his church. I guess I'm saying he's pretty cute, but also small-town.

        But in all of it Sean, I was saying if he's so determined to fund the procedure that he wants to "study" it here, he could save millions of dollars by just paying for those who need it. Brad is determined to make SK a leader in SOMETHING — MS treatment, or nuclear power, or football stadiums.

        • There's good reason to procede slowly with treatments and medicines, despite understandable urges end suffering:

          http://en.wikipedia.org/wiki/Thalidomide

          Even paying for folks to get the treatment at their own risk is an unacceptable precedent for all miracle cures, snake oils, placebos, and the like to be considered valid on the basis of faith and hope alone. Ya, hope has its place. But not when it diverts understanding and resources away from things that can actually improve and save lives.

  11. Granted that I'm a heartless right-wing bastard, but in cases like curing a major disease where there is an obvious, huge, and immediate benefit to consumers as soon as a successful treatment is developed….would it not make more sense to let private enterprise take the lead (and the risks) rather than having politicians decide which avenues to fund? The profit motive is pretty high here, so it should work pretty efficiently. Once the most successful has been found and its investors are reaping the rewards, then politicians can jump in and perhaps advance funding either to make it cheaper or simply to buy it for those in need.

    Shorter right-wing heartless bastard: industry is better at finding the route to success (where there is much profit to be made) than politicians. Politicians are motivated less by final success and more by projecting the image of compassion and "doing something" so that they can get reelected and garner a few favorable mentions in the press. If Zamboni's treatment is showing promise there will be boatloads of cash available from private investors who hope to reap the profits from it. If it isn't, we shouldn't be investing in it anyway.

      • Exactly. Private enterprise is great at doing some things. Finding cheap, potentially permanent cures to illnesses that have been making them a ton of money otherwise is not one of them. There's basically no private profit motive here, should the treatment work.

        Unless you can think of some way of charging tens or hundreds of thousands of dollars a year to perform a cheap and simple procedure that seems to last for years for some patients.

        • A proper heartless right-wing bastard would have said "a cure you can sell once, but treatment, you can sell that for an entire lifetime. I mean, they're gonna die eventually anyway, right?"

          • Yes, which is why the guy providing the treatment is not very motivated to develop the cure. But since private investment is composed of many players (unlike government, which is just one player) there will be others to step up and develop a cure so that they can reap the profits. No one would pay for treatment, after all, if they can pay for a cure instead.

          • Government has a big financial incentive in this case because it is footing a large part of the bill for treatment of many MS patients. One could argue that other than the patients and their families that they have the biggest financial incentive to find an inexpensive cure.

          • … but if there is a cure one day, it WILL be expensive. Because the value placed on those exerting the demand will "pay almost anything" to have it, and it will still be worth that inflated price.

            Which is why I, like G, have no time for the conspiracy nuts claiming "Big Pharma" will keep this down. Everyone wants to make their mbillions on the next better mousetrap, and health care is no exception.

          • It is CAPITALISM (UPDATE: a much more appropriate choice of words would be "PROFIT MOTIVE") that has brought us better medicines, home blood pressure monitoring, pacemakers, smarter insulins and insulin pumps, hepatitis and HPV vaccines (among others), etc. It is GOVERNMENT REGULATION that has brought us protection of study participants in trials and of consumers with the approval process and surveillance after approval.

            Which is what bothers me about what Wall is doing. Government is supposed to make sure new developments come along that are smart (there is a decent scientific rationale to pursue this line of research), safe (benefits likely to exceed risks based on what is known so far), and effective (it works — it actually works). What Wall is doing is jeopardizing the "smart" and "safe" by pre-deciding above the heads of the usual checks-and-balances system. Not smart.

          • I disagree with you that profit motive is what has brought advances in medicine. Advancements in medicine existed long before capitalism existed in in its current form and it's not like communist Russia was scientifically illiterate and incapable of innovation and developing these things.

            And it's not like Brad Wall is going to go around and start doing angioplasty on random people a la Louis Pasteur. To my knowledge, he's simply going to provide funding for a clinical trial once a qualified group proposes a suitable one.

          • I should add further to the disagreement about profit motive that I think human curiosity and passion has more to do with advancements in medicine than profit motive. Most advancements in medicine start with basic research that is funded largely by the government or charitable institutions. The people who do this research are not normally driven by big financial gains for themselves. They do alright, but it's not like they are investment bankers. At some point along the line from basic research to final product the private sector will take over but that is only an efficiency arguement. There's no real reason that government couldn't continue funding research to final drug discovery (other than the efficiency arguement which is a good one).

          • "but if there is a cure one day, it WILL be expensive."

            That's not necessarily true because (if the solution is a simple, non-patentable medical procedure) the supply will exist to keep the price down. All you need are trained doctors. The current treatments are expensive because the process of getting drugs through clinical trials and manufacturing them is by far a more expensive process. It also has nothing to do with a Big Pharma conspiracy to keep treatment costs high since there's three or four different companies in that business. That's just how much it costs to deliver.

            And I think it's worth pointing out that people are already getting this treatment in foreign countries for a total cost on the order of 10K. A year's supply of disease modifying therapies is on the order of 20K. It's already being provided cheaper than the status quo with limited resources. You could argue that that will increase if it does become "the cure" but it would probably still be much cheaper for the government long-term than paying for the disease-modifying therapies.

  12. Most of the posters have missed the point that it is research that Wall is proposing. Yes, he is moving the funding of the research out of normal channels and yes the research will involve treating some people. However, only a fraction of MS sufferers in the province will be eligible for trials and only a fraction of the patients that get into a trial will be treated with the procedure.

    • If it's such a modest project one wonders why another jurisdiction hasn't done it already?

      In any event, you point is well taken.

      • Well, the cost is not that small; one reason medical research is so expensive is that medical trials are very expensive to run. Moreover, there is virtually no way to restrict the benefits in this case to a particular jurisdiction even if one wanted to.

    • I think we're all clear that he's moving to finance clinical trials, as opposed to simply including the treatment as a part of his province's health care menu.

      I don't see how that lessens the concerns being raised for privileging a procedure with substantial unanswered questions attached to it for clinical trials, largely on the basis of vocalized faith in it from some groups.

      • I understand your point about process.

        However, if definitive answers regarding these treatments do come out of these trials in Saskatewan then it is going to make a significant news splash. People outside of Canada will look up where it is; I'll perhaps even learn how to spell it correctly. It would help the province as its brands itself as an intellectual powerhouse in the life sciences. The impact will of course be much greater if there is some benefit.

        So while I understand the rational for sticking with expert opinion and following established procedures, I don't see how this fails to be a win for Wall or the province. This assumes he is earmarking new money for this and that the trials are competently run.

        • " I don't see how this fails to be a win for Wall or the province"

          How about when the science turns out to be non-existent, and it's a lovely placebo effect? What about the research dollars and time spent here? That's a loos to everybody with cancer, asthma, diabetes, etc.

        • "However, if definitive answers regarding these treatments do come out of these trials in Saskatewan then it is going to make a significant news splash. People outside of Canada will look up where it is; I'll perhaps even learn how to spell it correctly. It would help the province as its brands itself as an intellectual powerhouse in the life sciences. The impact will of course be much greater if there is some benefit."

          A lot of 'ifs' and 'maybes' there, and a lot of hope for fringe benefits unrelated to the matter at hand. Which kind of makes me more skeptical, to be honest.

          What about the responsibility to govern with an eye to the future ramifications of one's decision? What if Saskatchewan's reputation becomes that of an easy mark for anyone preying on the hopes of the ill, and sufficiently skilled in rallying their support to lobby the government?

          Both the hope and potential expense generated by both legitimate and more dodgy medical science are pretty much infinite. If we don't start taking measured and responsible steps to make sure both are kept affordably in check, we'll soon be facing bankruptcies of both money and reasoned discourse.

          • Well, I will be happy to concede the argument to you & civil, if you agree that all 3 of us hope that Wall & I are right.

          • Believe me, my wife and I hope you and Wall are right. But we think you won't be.

          • Seconding Sean:

            …and it is GOVERNMENT's role to place the "measured and responsible" steps in place for the protection of study participants, and, ultimately, human patients. Not to bulldoze over its own steps with its dodgy winner-picking that rarley ends well in any circumstance.

            What Wall is doing here is NOT smart.

        • I'll perhaps even learn how to spell it correctly.

          I'm pretty sure the only reason I know how to spell it correctly is because it was my only wrong answer on an elementary spelling test, and that province ruining my shot at glory has stuck in my craw ever since. How is there no "I" in there somewhere? Sas-KATCH-eh-win. Saskatchewin. No?

          • When I get it wrong, I simply claim that I am being true to the original Cree.

          • kisiskāciwani-sīpiy

            Yeah, I can see it.

  13. And looky here! A double-blind controlled study is being conducted! http://www.physorg.com/news197124296.html

    "In the first phase of the study, ten MS patients from the United States and Canada who exhibit venous insufficiency will undergo minimally invasive venous angioplasties to determine if the procedure can be performed safely. The procedures began June 29 and will continue today (June 30), performed by Siddiqui and Levy at Kaleida Health's Millard Fillmore Gates Hospital in Buffalo, New York."

    "In its second phase, the study will randomize 20 MS patients who will undergo either venous angioplasty or a "sham angioplasty" (i.e. a catheter will be inserted but there will be no inflation of the balloon). The treatment will be blinded in such a way that neither the patient undergoing the procedure nor the clinicians evaluating the patient will be aware which procedure was performed."

    • Because the higher up you are, the more you get to give good news announcements.

      Also, McMorris is a DRIVING INSTRUCTOR by trade, and a pretty weak health minister.

      Check out Brad's facebook page: he's being heralded as a Man of Vision, offering hope to MS sufferers everywhere. He should be careful what he wishes for!

      • Also, McMorris is a DRIVING INSTRUCTOR by trade, and a pretty weak health minister.

        Typical lib/left elitist. Maybe he'd bring a more common sense approach to medicine, ever think of that? Right now it's just a bunch of egg heads with their beakers and test tubes and microscopes and ear flashlights, always telling me to "stop smoking" and "stop drinking" and "wear a helmet when you're street louging" and "hey that gash on your forehead looks infected". Well soooorrry, Dr. Mom.

        • Come now, Olaf. When you use "typical" in a sentence, it deflates the rest of the argument. One of the better health ministers (5 years in the job) was Ontario's George (I love my photo-op) Smitherman. No med training, no social skills and no tact, but respected for his policy work. And, by gosh, a Liberal.

          Now go wash your hands.

        • Apologies. It's very possible McMorris is a weak minister because he is a fly-weight when it comes to intellect and personal skills, and has nothing to do with the fact that he was a driving instructor.

          • Oh so now an average intellect and decent interpersonal skills are a prerequisite to becoming a provincial health minister? What's next on your laundry list of ivory tower, holier-than-thou "must have" qualifications, Patchouli? Honesty? Triple digit IQ? Competence? You people sicken me.

    • That one's easy. This is a political announcement, not a health one.

  14. Colby, this is the most useful, measured, thoughtful analysis of Zamboni (and the circus developing around him) that I have seen or read in the media since CTV went all giddy about him several months ago. Thank you for this.

    • I absolutely agree. Circus is an apt description. I have MS and am have been bombarded with people asking me when I am going to get the "cure". Enthusiasm for my recovery soon turns to judgement for my cautious, and more than skeptical, view of an unproven and highly theoretical treatment. 100% of MS patients do not have stenosis and therefore would not benefit from the treatment even it were proven through scientific research and trials. It is a relief to read an article that looks at the issue reasonably and removes the rose-coloured glasses that other journalists seem to wear when it comes to reporting about Dr. Zamboni and the liberation treament. I have forwarded it on to friends and family who are unwilling to understand why I am not a true believer.

  15. Might 'this' have been left alone by medicine, encouraged for years by pharmaceutical companies, for years because there's no profit in such a cost effective fix? Could it be – especially for right wingers – that if every MS sufferer had his operation, the savings in drugs would be phenomenal for each province? Might it be that the other parameters that you discuss are interesting – and perhaps even valid – and who knows why they exist, but really, who cares if this treatment works? If you were an MS sufferer – an otherwise fit young person – would you not want the chance? And the chances are that the only chance you have is through your medical plan. Because by the time your MS has been diagnosed there's a good chance that you will already have lost your job and be suffering economically too. And perhaps be a single parent.

    • Might it unfold that some people die as a result of testing this procedure, and it proves of no real value?

      Might we be risking a world where all public health decisions began to be made on the basis "it might work"? (And surely, you're aware of the multi-billion dollar quack industry that preys upon the sick and scared amongst us on the very basis of "it might work". Do you realy want governments to go down that road too?)

      Might there be established ethical and scientific reasons for what you call "parameters"? (I can already answer that one. There most certainly are.)

      Even if vague insinuations of drug industry conspiracies were worth anything (they're not – back it up with something), might there be other sources of funding, motivation, and prestige for medical researchers other than big pharma? (Think about it…)

      • Sean, the Sask. Government is funding RESEARCH into the possibilities of this treatment. Research is what is undertaken to test ideas that "might work" and to advance them if they do indeed show promise.

        Also, besides the alternative health industry, which has more than its fair share of quacks and shady dealers, we have Big Pharma, which generates monstrous profits from peoples miseries. As for-profit corporations, that is their only reason for existence. Funding for research that is provided by Big Pharma is either made as a tax writeoff or comes with strings so wound up they make the Gordian knot look like a reef knot. They don't do anything that doesn't improve the bottom line, or at least promises future gains. To expect them to be altruistic, especially in an area that might cost them sales down the line, is being rather naive.

  16. Brad Wall is doing what all the other gutless wonders won't do and my hat goes off to him. He has not been swayed by pressure from those with a vested interest to halt this. We MS patients have a right to know if we have the blocked veins and the right to have it fixed by a good vascular surgeon. For the MS society, MS clinics, Neurologists and drug makers all fighting this tells me they have never wanted to see a cure or even anything that may help us to not progress and that is criminal. For way to many years now these so called health organizations have collected millions of dollars for what? MS, Cancer, Lung etc and what have they done other than pay high wages to CEO's most money goes to administrative costs to keep all these people in jobs and not much has ever gone to finding the cause of these diseases. That is a fact. So thanks brad Wall hopefully he does not cave in to the pressure that will surely dump on him with these groups who have a financial vested interest in us staying sick.

  17. They wonder why, if MS is a vascular disorder, it almost never appears after the age of 50.

    That statement is clearly false. Zamboni has been telling form day 1 that CCSVI is not the cause of MS, but might be a significant factor.

    Also did you know that some of the authors have been paid by pharmaceutical company's in the past?

    Dr Khan has received research support from the National MS Society (NMSS), the National Institutes of Health (NIH), Teva Neuroscience, Genzyme Corporation, Biogen Idec, Novartis Pharmaceuticals, and Acorda Therapeutics; consultancy and speaking honoraria from Teva Neuroscience, Biogen Idec, Novartis Pharmaceuticals, and Bayer Healthcare.

    Dr. Filippi has received research support from Bayer-Schering Pharma, Biogen-Dompé AG, Genmab A/S, Merck Serono, Teva Pharmaceutical Industries Ltd., Fondazione Italiana Sclerosi Multipla (FISM), and Fondazione Mariani; consultancy and speaking honoraria from Bayer Schering Pharma, Biogen-Dompé AG, Genmab A/S, Merck Serono, Teva Pharmaceutical Industries Ltd.

    Dr. Freedman has received research support from the Canadian MS Society, EMD Merck-Serono, Genzyme, and Bayer Schering Pharma; consultancy and speaking honoraria from Teva Neuroscience, Bayer Healthcare, and EMD Merck-Serono.

    Dr Barkhof has received research support from the Dutch MS Research Foundation and Merck-Serono; consultancy and speaking honoraria from EMD Merck-Serono, Bayer-Schering Pharma, Biogen-Idec, UBC, Sanofi-Aventis, Novo-Nordisk.

    So how objective is their article is the biggest question! You might want to read this open letter: http://www.direct-ms.org/magazines/Embry%20Open%2

    • Oh yeah? Well Zamboni has been not paid by not pharmaceutical companies! So clearly he has a shady anti-pharm agenda he's pushing.

      Most MS research is on the drug side. Drug research is paid for my drug manufacturers. Does this surprise you?

  18. There is only one "cure" for Multiple Sclerosis. The good news is that it is currently finishing up phase II clinical trials and phase III clinical trials are planned. Probably in a matter of about ten years (or hopefully less) it will become standard treatment to cure MS in Canada and the US. I'm so confident in the procedure that I did it myself and (like many other people) it cured me of MS. You can read about it here:
    http://themscure.blogspot.com/

    • If this works, and we're hearing it from one who is afflicted (and others as well)…then why not get behind stem cell research, bigtime.

      • I'm all for stem cell research and fully support it. Stem cell research of the 1960's made hematopoietic stem cell transplantation possible to stop the progression of MS today (and in many cases reverse it). I'd love to see the next stem cell advancement for reversing MS disease deficit in progressive cases.

  19. I wouldn't doubt the argument you put forth from a scientific perspective, but your whole argument centers around affective cures, proven methods. How about the individual who says, "I am dying, or my wife, son, daughter is dying or sick – I need need help, I need support." Any Argument will have to answer this; even if, as you argue, it is unproven, ineffective, and the cost is extravagant. The center of any argument has to be," We will provide for you and support you, and this is how – (not an easy answer).You will not convince people on economics and/or other scientific studies alone.

    • Sorry I mentioned "economics and/or other scientific studies"; I should of stated economics, or other scientific studies – recognizing that economics is far from being a science.

  20. I rather admire the stoicism, evidently informed by experience, of one CBC.ca commenter (indeed, this may be the first cogent utterance ever made by any CBC.ca commenter)

    Which makes it all the more funny that as of this writing, the comment in question has 15 up-votes and 26 down-votes.

  21. Ok Colby, who did you get all your information from? My guess is Dr. David Spence from the University of Western Ontario. Both of you like using big words like quackery.
    I am not going to waste my time with you or any other closed mined placebo of a reporter or doctor. My wife and thousands of others have been given the label of MS. Now that there is proof that they are suffering from CCSVI and our medical system will not treat them as they have been diagnosed with MS. This is the story, improper blood flow.
    Colby, stick to reporting on Rodeos, you are great with bull____!

    • Canadians demand more Colby Cosh rodeo stories.

  22. K…do any of you have MS?? Just curious?? See I have MS and for us to see a Premier step up and help us fight for this brings me HOPE brings my girls HOPE my husband is getting HOPE…I am 35 and I have had this disease for just over 3 years I have always supported welfare and scum lords my whole life and I WANT this procedure done…My legs fell asleep just over 3 years ago and they never woke up so why is it we are argueing on OUR life?? This is OUR choice no one else's I will go to Saskatchewan for any testing even if it stops the progression I will do it…why is it ok to support the " losers " in life and the "wanna be's " but yet we are showing very positive signs with this treatment and everyone is nay…Yes I am upset and sick and tired of this I have never done anything but been a good girl and pay my taxes and this is how we are treated?? I had a very good job and now disability…Yea I know sucks to be me or you are sorry….I want this treatment……Even if the progression just slows down from this procedure I will take it my girls are little they need their mommy back…

  23. part two:

    Did you know how much this medicine is it ranges from 17 grand to 50 grand and guess who pays for it lol…yep tax payers wouldn't you rather pay one time $1500.00 and then done?? makes sense to me…..

  24. None of the existing treatments for MS nor the autoimmune hypothesis answer any of these questions either, why should this one?

    All that matters is: does treatment of the blocked veins found in MS sufferers improve their health? That is what Brad Wall is attempting to find out by funding a clinical trial. If treatment of blocked veins beneficially impacts the health of PwMS and is found to be safe (certainly some risk is allowed for treatment benefit – see the risk of death, leukemia, cardio-toxicity, liver damage or massive brain damage found in existing MS treatments), then let's go ahead and offer the treatment to MS sufferers. The rest of the details and answers relating to prevalence, geography, demographics, etc. can be worked out later.

    This is an existing low risk, inexpensive treatment that doctors are already qualified to perform and regularly do. If unblocking veins helps MS sufferers, then by golly, let's make this treatment available to them. We don't need to know all the answers in order to effectively treat. It is a red herring to suggest that we do.

    • None of the anecdotal reports following the so-called liberation treatment point to any *objective* improvements – lots of self-reported descriptions of decreased weakness and fatigue, but that's about it. Has there been remission of MS lesions on MRI or documented improvements in function on neurological exam? I agree that such studies should be done, but it is grossly premature. It's not even evident that CCSVI *exists* as a clinically significant condition, let alone something connected to any form of MS.

      Venous angioplasty is neither routine, entirely low risk, nor inexpensive. There is only so much time available in cath labs, and – to put it bluntly – patients who require interventions for actual vascular diseases (cardio-, cerebro-, and peripheral) and who will gain demonstrable benefit from them take absolute priority. Someone waiting for elective coronary stenting or aneurysm coiling should not lose priority.

  25. Colby, are you trying to slow down the research because you (a) want people to use the intervening period to get unnecessary treatment or (b) so that people can continue to have brain damage while a perfectly viable alternative simply needs to be proven.
    If Buffalo can fund a double blinded clinical trial, so can Saskatchewan. If 1500 people have been treated with greater than 66% showing improvement – the faster we get some solid evidence the better. You're editorial is poorly researched and irresponsible.

  26. 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!

  27. After 6 months of offering stem cell therapy in combination with the venous angioplasty liberation procedure, patients of CCSVI Clinic have reported excellent health outcomes. Ms. Kasma Gianopoulos of Athens Greece, who was diagnosed with the Relapsing/Remitting form of MS in 1997 called the combination of treatments a “cure”. “I feel I am completely cured” says Ms. Gianopoulos, “my symptoms have disappeared and I have a recovery of many functions, notably my balance and my muscle strength is all coming (back). Even after six months, I feel like there are good changes happening almost every day. Before, my biggest fear was that the changes wouldn’t (hold). I don’t even worry about having a relapse anymore. I’m looking forward to a normal life with my family. I think I would call that a miracle.”
    Other recent MS patients who have had Autologous Stem Cell Transplantation (ASCT), or stem cell therapy have posted videos and comments on YouTube. http://www.youtube.com/watch?v=jFQr2eqm3Cg. For more information visit http://ccsviclinic.ca/?p=838.

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