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A scan displayed by Italian Dr. Paolo Zamboni shows a partially blocked vein in an MS patient.

Federal agency won't yet fund studies into MS theory

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CTV National News: Avis Favaro on the funding
Canadians living with MS will have to wait even longer if they want their own government to fund research into a treatment known as the 'liberation treatment.' Despite countless success stories from MS patients who've travelled the world for the procedure, a panel of Canadian scientists says there's just not enough evidence to justify a major clinical trial in Canada.
CTV Calgary: Karen Owen reports
The Canadian Institutes of Health Research says it is not yet ready to fund new studies to test whether the Liberation Treatment helps patients with multiple sclerosis.

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A scan displayed by Italian Dr. Paolo Zamboni shows a partially blocked vein in an MS patient.

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A scan displayed by Italian Dr. Paolo Zamboni shows a partially blocked vein in an MS patient.

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Date: Tue. Aug. 31 2010 6:25 PM ET

The Canadian Institutes of Health Research says it's not yet ready to fund new studies to test the "liberation treatment," a controversial approach to treating multiple sclerosis.

CIHR President Dr. Alain Beaudet told reporters Tuesday that after reviewing the research so far on the treatment, and after consultation with neurologists, radiologists and other experts, "there was unanimous agreement from the scientific experts that it is premature to support pan-Canadian clinical trials on the proposed 'liberation procedure'."

"There is an overwhelming lack of scientific evidence on the safety and efficacy of the procedure, or even that there is any link between blocked veins and MS," he said.

Without sufficient scientific evidence of the procedure's safety, it would not be ethical to study the procedure at this time, he said.

The CIHR did say it would establish "a scientific working group" to monitor and analyze results from seven liberation treatment studies, sponsored by the MS Society of Canada (four of those studies are from Canada and three are from the U.S.), as well as from related studies from around the world.

When the final results from those studies are available, the working group can then recommend further studies, "including, if appropriate, a pan-Canadian interventional clinical trial," the CIHR said.

The Multiple Sclerosis Society of Canada has been cautious about the new theory, saying a lot more research is needed.

In June, the society and its U.S. counterpart awarded a combined $2.4 million in research grants aimed at investigating Zamboni's theory. Four Canadian universities and three American centres will begin research later this year.

The CIHR decision not to fund further studies will surely disappoint many MS patients who have called for immediate research into the treatment ever since CTV's W-Five aired two reports on the controversial treatment.

MS patient Ginger MacQueen, who had the treatment in Poland and says her MS symptoms improved enormously, says the decision will simply drive more patients to foreign clinics.

"They are going to go abroad. They are going to go to Poland, or to the States or any other country that is doing angioplasty and they are going to get treatment there because our country refuses to act," she says.

The "liberation treatment" is based on an unproven theory proposed by Italy's Dr. Paolo Zamboni, which contends that many MS patients have a vein condition dubbed CCSVI (chronic cerebrospinal venous insufficiency).

The theory holds that CCSVI leads to blocked veins in the neck or chest which causes blood to reflux back into the brain, leading to the symptoms that mark MS.

Earlier this year, editors at the Canadian Medical Association Journal joined the "liberation treatment" debate, encouraging MS patients to demand more research into the theory. But they added that new research funding should be allocated based on evidence, not political or patient pressure.

With dozens of MS patients going overseas for CCSVI treatment -- at their own expense -- many patients have organized petitions calling on the federal government and their provincial governments to fund studies and treatments.

While a number of provinces have said they would fund clinical trials into the treatment, so far, no studies have been approved.

Comments are now closed for this story

Dawn S.
said

I have been tested for CCSVI and have been diagnosed with having blocked jugular veins. Does it have anything to do with my MS? I don't care. The veins that drain blood from my brain to my heart don't work effectively, I want them corrected. Wouldn't you?


Liz
said

Boy, our Health System/Gov't are the ones that need immediate medical attention! They are so ignorant, closed minded, etc. that they can't even do further research to make proper conclusions??!! Sounds like they are the ones that are suffering from mental illness! We continually hear how MS is so very common amongst us, how everyone hoping to come up with new therapies, etc. to make life easier, etc. Not even researching CCSVI properly sounds pretty hypocritcal to me!


BrianLight
said

The decision does not consider the eye witness evidence reported by MS patients themselves. It is not being tabulated by anyone and it easily could be by putting a call out to neurologists who have been monitoring thier symptoms for years.
If you have MS or are a family member of some one with MS and you feel this decision is unjust I advise you check out what is happening at angioplastyforall.


Natalie
said

It's a shame that so much energy is being put into talking negatively about the CCSVI theory rather than getting on it and testing it out. There's no good reason why determining the facts needs to take two years. When brain damage is ongoing, no-one has two years.

Bless the internet, it remembers everything. At the point when CCSVI tests out as an intrinsic component of the MS process, it's going to be too late for a lot of sufferers, but there's also going to be a big, nasty downfall for the MS Society and their current advisory panel. I only hope that it's very humiliating, very public and very complete.



Doug # BC
said

I actually support the government on this.There is no medical reason to believe it will work for very many MS sufferers.And "medical experts" is a term we should all view with caution.What are the qualifiactions required to cindider anyone a "medical expert"? For the few doctors that claim this procedure is valid,there are thousands who think it's little more than quackery.Yes,we'd all like to give MS patients a ray of hope.But false hope is a torture I would impose on no one. The government is not banning the treatment.If you think it will help you,you can go for it.You just have to pay for it yourself.There is no Charter Right to experimental medicine.AND,the health care dollars can save more people if they are spent on treatments that are proven.The cost for one "experimental" patient using this procedure would probably help 5 or more patients by being spent elsewhere. Research takes time.And research in this procedure will go on.Just not in Canada.But mark my words,time will almost certainly show this treatment is NOT a cure for MS.Compassion is a great thing to feel for your fellow citizens,but a poor excuse to pour money down the drain. Spend the money on a child you KNOW you have a treatment for,and who you KNOW will benefit from the help.Lord knows we have plenty of them on waiting lists everywhere.


Seriously
said

Anne M:

Pound sand! You have no idea what MS is like, You have no concept of how difficult the most simple tasks can be. Before you, as a non-MS person I'm assuming, rush to support the CIHR you should really educate yourself with more literature before posting something so callous.


Albertaboy111
said

I have seen the improvements of this procedure with my own eyes. You people saying take it slow, and it doesn't work are going to feel very stupid when the results of studies currently being conducted around the world are released in a few years. You know, the studies that these "scientists" are ignoring when coming to their conclusions? Their have been nearly a dozen studies done in this area and 2 (done by neurologists, the group set to loose the most funding if this works) are the only ones they have quoted? Why do you think they are ignoring positive data in favor of negative data? I just hope none of you know anyone who suffers from MS, and certainly hope none of them pass on while you call for caution and slow research. That will be quite the burden to bear when it is shown this treatment works. I will leave you with this, if you had a blocked vein, regardless of if you had MS or not, do you not think that would have a negative impact on your overall health, and don't you think you would want to be able to get that fixed? My dad had a 95% blockage in both jugulars that is now fixed. I have seen the improvement with my own eyes, and nothing anyone can say will make me change my stance. MAKE THIS LEGAL IN CANADA NOW!!!!


Liz
said

Naturally, it is all about the $$. The drugs they prescribe for MS are about $20,000 per year, per person. Do the math at the amount the drug companies would loose.
@Anne M- you obviously do not know anybody with MS. When they look at the results other MS'ers have had, they jump on that ray of hope!


Jim in Twillingate NL
said

Why are people so worried about giving MS patients false hope. First this procedure is to clear obstructed veins and therefore this isn't an MS procedure. This being said, if an MS sufferer shows remarked improvement after the procedure then this is a blessed bonus. If the MS patient doesn't improve then they can continue on the therapy that they are presently receiving. Unfortunately this therapyleads to slow deterioration of the functioning body. I think that the relatively simple procedure of unblocking a vein whether successful or not is at least a better option than becoming incapable of caring for yourself. Give these people the hope and start the procedures today!


Will
said

Having a child with MS, I am pleased to see them proceed cautiously. We don't need quack-cures with no basis in science. We DO need real science on this. And for the dope-heads, NO POT DOES NOT CURE ANYTHING.


Bryan
said

I think people need to re-read the article - no one is suppressing trials or hiding data. There are on-going trials in the US and Canada seeking to test the efficacy of the liberation treatment. All that this board has said is that they are not going to fund any additional trials until there is better data to support moving forward.And they are right to do so - only Zamboni (inventor of the "liberation treatment") has seen positive results from this treatment, and only in a tiny number of patients. In other trials in places like Buffalo, CCSVI was not universal to MS patients, and was seen in a large number of non-MS controls. No other clinical trial has yet reported any results; so ANY claims of efficacies are wishful thinking.This is how real science works - it takes time to build up a body of evidence to support a therapy, and it takes the same amount of time to build up evidence showing a therapy doesn't work. It's not a conspiracy, its not people wanting to hurt MS patients. Its science working in the way science works - methodical, rigorous, and analytical.


Kelly Bartkiw
said

What harm is it going to do to open up a blocked vein? Please, what's the fuss anyway? Just go ahead and put a shunt in a blocked
vein - any old blocked vein - and see how much better the engine runs! This isn't new!

Paul
said

I really hope the government looks at this seriously and does start putting money towards the research. A friend is currently overseas and had the procedure and reports are amazingly positive. Come on Canada, you waste money on much less important things, spend some and give Canadians living with MS a chance.


Susan Fairbairn
said

The CIHR may have reason to be reluctant to fund Canadian research into this "liberation treatment" until more is known about the long-term effects of the procedure. Maybe those who believe the procedure is the only way to go should be the ones that providing the funding for further testing and research here in Canada.


VERY SAD
said

OH MY GOD!! Politics at it's best. We won't fund research because there is not enough information. Isn't that the purpose of collecting research info? If the research is done, it may help some, it may not. At least we would know once and for all. If it doesn't work, then the research would prove that. MS medicine can average approx 1800.00 every four weeks!! Mine is just under that. And by injection only. How many companies are making a boat load of money? I am not alone with the knowledge that this procedure may only work for some but at least it is another alternative.


Kris
said

My sister-in-law has MS. Thank God, she is not in a wheel chair yet, but it's coming, and she has a 3 year old daughter who needs her. She takes the meds, and it makes her sick for days on end. She was tested to see if she had the blockage, but there is not a choice for her to deal with the findings. She even knows a woman who went to India to have the procedure done, and she's like a different woman. Walking completely upright and feeling wonderful.
I understand not rushing into things and making sure that it won't do more harm. But it does appear that the treatments are successful. I just hope that they don't wait too long.


Diane
said

Wonder who the medical experts were... probably not Dr. Sandy McDonald or Dr. Mark Haacke...and the other medical experts who have done research. Dr. Simka is about to release a paper where he states that out of 500 or so patients he has treated in Poland so far, 97% have CCSVI.


D Lloyd
said

Sorry, meant to say "vascular surgeons" instead of "cardiologists" in my previous comment.P.S. I hope CCSVI treaments are allowed soon in Canada...even if only for compassionate reasons.


Sandra McIntyre
said

I wonder how much these scientific experts that voted against this received for there no vote...


D Lloyd
said

Doesn't look like any cardiologists were consulted. This is insane...another case of neurologists (electricians) impeding the work of plumbers.My wife has MS and has also had two recent heart attacks. Her constricted veins near the heart were IMMEDIATELY corrected (both times) with stents. She has recently been diagnosed with "significant blockages" in the neck. Her neurologist ignores her pain and swelling around the neck. He only prescribes more medication that doesn't work.I don't care about theories...we need help!Can't wait any longer...need to get treatment outside of Canada.


choyce
said

How much money goes out of this country to help other countries? Canada Health Care and Government needs to give the same compassion for MS patients and ALL health care needs of Canadians. I love to help those in need, at the same time I would want the needs of Canadian patients being forefront. I have expereinced the deterioation of healthcare in Alberta and enough is enough, it is not acceptable to put bandaids on where research could give health and quality of life to so many suffering. Yes, I also agree.. where are our PET equipment?? Spent on bonuses?!!


joyce manning
said

So I guess the Canadian Intstitute for Health Research may not have come face to face with someone who cannot swallow food without choking, someone who cannot go a day without stumbling, someone who suffers from nerve pain day and night. They are too busy in thier own money making little world to care about you or me. The money is in the drugs, people!! NOT the treatments that are being proven promising for us.


Penny
said

This piece says that the CIHR confered with experts - neurologists, radiologists and neurologists! I realise that this is a typo but it is so near the truth. The CIHR continues to take their information from neurologists. How many times does it have to be pointed out that CCSVI is a vein issue and we need to have our veins looked at and treated whether we have MS or not.
There has been so much more data coming out worldwide including an abstract of a new paper by Dr Simka (Poland). The CIHR is completely blinkered. I am so fedup with Canada on this issue.


Steve
said

Is it a surprise! The federal government not wanting to fund research, Harper doesn't believe in scientific facts. He blew over a billion on the fake lake, G supper do nothing meeting, but won't fund research to help Canadians. Oh yes those prisons for unreported crimes are far more important than the health & well being of Canadians. Millions sent to Haiti, Pakistan, but no money for Canadians. Even the American auto companies got bailout money from Harper, but a few million for Canadians health sorry, Then Harper fly's off to the Arctic & spends a million on a photo opt.


Deb
said

It is unforunate that our Canadian government does not support this and the MS suffers of Canada must travel abroad for help, but what about the ones that just can not afford it? Angioplasty has been used in Canada for years to open narrowed or blocked blood vessels to the heart. This is basically what they are doing for the MS suffers, the difference is to the brain. So why is it ok to preform this for heart patients but not MS patients? The pharmaceutical companies of Canada would loose alot of money from these patients if it were to be performed here in Canada. Is this what is stopping our government from helping our MS suffers? Would this not be concerned discrimination? I am one of the fortunate ones that was able to help someone go to Poland and the results are priceless. Thank You Poland.


Betty Ann V - North Vancouver
said

Why doesn't Canada do the testing at least? This is non-invasive but it might give MS sufferers some hope! Imagine how many MS victims might not be alive for this CCSVI in 10 years? How can you tell I have MS?


Jablonski
said

No surprise. Follow the money folks. The doctors that make these decisions receive huge benefits from pharmaceutical companies. An effective treatment means no more drugs. Follow the money folks, follow the money.


BCson
said

My parent will be heading to India in order to get this treatment just for the hope that it will work to deal with his MS. I understand the reasoning CMAs decision but am also SEVERELY dissappointed with the result.


Mary
said

CTV, please do a story on the fact that the Society of Interventional Radiology has come out with a statement in favor or more research into CCSVI for MS.This shows that not all "experts' are opposed to CCSVI.


Anne
said

No surprise here. Wouldn't you think though that unclogging a vein would be a good thing in any case? All of this supposed uber caution by CIHR and the like probably has more to do with impact that such a simple cure may have on funding and profit. It's pathetic that MS patients cannot get this simple procedure to see if it might alleviate some symptoms.


Terry
said

It's simple really, there's no money to be made by either the drug companies or the societies that bring in millions of dollars/year if a cure was ever found but plenty to be made in research. Look at the billions of dollars spent on Cancer research worldwide and where are we today. We're still irradiating the "Bejesus" out of patents and pumping poison through their veins.


Elizabeth
said

So this means that a patient who presents with evidence/symptoms of cerebrospinal venous insufficiency would receive what is currently an approved treatment ONLY if he does NOT have MS? And an MS patient won't even be tested for CCSVI (just in case he might have it) because he won't be allowed to have the same treatment as anyone else? Oh yah, that makes alot of sense....


Graeme McLean
said

Ridiculous. I understand the placebo effect, but these testimonials aren't just "my stomach feels better", people who couldn't stand up are going for walks, etc. This clearly deserves to be strongly investigated.


Mary
said

Isn't it ironic that they are not willing to fund studies because not enough studies have been done on the procedure?


peter in MB
said

@Sue stop blaming the federal conservative government for eveything. it is the Canadian Institutes of Health Research that is calling the shots. They get a lot of funding by the pharmaceuticals companies so they will continue researching drug therapy. There is also a theory that MS might be caused by insecticides but the chemical companys have done their best to make sure that theory and any research have been squashed under the carpet.


Shawn
said

yeah, what the hell, give it another 18 years.


Jin in Ottawa
said

This is a tough call. On the one hand, there are patients that swear by the results; on the other, their are doubts within the medical community. I encourage all sides to tread carefully to achieve the best possible results for all stakeholders.


Curtis Brooks
said

It is a shame that doctors such as this are not behind the liberation treatment. They say based on a lack of evidence, yet are against gathering that same evidence through clinical trials. I to know people that have had this treatment and it does show promise. The treatment is FAR cheaper than the drugs MS sufferers take in a year and that is maybe why some who benifit from the drug companies are pushing this aside instead of saying maybe it is this simple, maybe we have been looking at it from inside the box too long! WHAT A SHAME!


Gregoryd
said

OH ya we will spend a billion dollars on security for a party for the elite at the G-20 but heaven forbid we would spend a few bucks on something that might help ms patients. These arrogant doctors that say it should not be influenced by patient concerns need to wake up and have a little compasion. After all that is what medicine is supposed to be all about. How many treatments and medications are delayed in coming to Canada because of these uncaring morons. Like pet scans which the US has had for years and saves lives in relation to cancer. We spend billions of dollars on health care and we just keep getting less and less for our money.


Sue
said

Of course not, the federal government doesn't believe believe in scientific facts.


Jonathan
said

Or it could be a whitewash by the scientific community. Imagine if the cure was that simple, and all the money that would have been wasted on research. All of the patient interviews I have seen have been positive in regards to the effectiveness of the treatement. This would be a relatively cheap study with no pharmaceuticals. Maybe that's why it won't get funded.


Anne M
said

I am glad to see that Canadian officials are taking it slowly before they leap and create false hope.When people are facing a devastating disease like MS, they will jump at anything that gives them a ray of hope. Thus they can become victims of some zippy researchers.Keep up the hope and faith, but don't rush to judgement.


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