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The cure for MS includes healthy skepticism and a dose of hope


Ethics and budgets demand that rigorous research precede clinical trials of Dr. Zamboni’s liberation treatmen

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Timothy Caulfield

From Wednesday's Globe and Mail

As many as 75,000 Canadians have multiple sclerosis. It is a heartbreaking affliction that can slowly rob individuals of the ability to do the most basic of physical acts.

It is no surprise, then, that the possibility of a new treatment has generated international attention. Paolo Zamboni’s 2009 announcement of a surgical procedure, known as the liberation treatment, produced both hope-heightening headlines (MS Sufferers Buoyed By New Evidence Of Surgical Cure, reads one example) and a market for the “cure,” populated by desperate patients.

True medical breakthroughs with immediate clinical relevance do occur, but just a bit more frequently than the passage of Halley’s comet. The discovery of insulin and penicillin, the development and distribution of various vaccines, and the perfection of anesthetic and safe surgical techniques are all good examples. Could the liberation technique be placed in this same category?

On Aug. 31, a joint report issued by the Canadian Institutes of Health Research and the MS Society of Canada made the breakthrough scenario seem less likely. The report, which stands as a wonderful example of the mobilization and utilization of independent scientific expertise, examined both the biological theory, a phenomenon that Dr. Zamboni has called Chronic Cerebrospinal Venous Insufficiency (CCSVI), and the clinical procedure used in the liberation treatment.

What did the report conclude?

That Dr. Zamboni’s research has numerous methodological flaws and should be viewed as a pilot study at best. That the liberation treatment involves an intervention, venous angioplasty, that is potentially dangerous and could lead to stroke and heart complications. And, perhaps most importantly, that “there is little support for the notion that ‘venous insufficiency’ for the brain or spinal cord contributes to the development of MS.”

This report, which accords with the emerging conclusions of other professional and scientific organizations from around the world, has a clear message: There is no good evidence that the liberation treatment works, or even that it could work. More research on the possible mechanics of the theory behind the treatment – that is, on the phenomenon of CCSVI – is required.

The day after the report was issued, federal Health Minister Leona Aglukkaq said she intends to follow the recommendations of the report and not devote federal money to clinical trials at this time. However, several provinces, specifically Saskatchewan and Newfoundland and Labrador, have reaffirmed a commitment to fund the clinical work.

In addition to the scientific reasons outlined in the CIHR-MS report, any decision to fund must tackle several other questions.

First, given the scant evidence to support the start of a clinical trial, is it appropriate to use scarce public research money in this manner? So much health research is required and lacking financial support – shouldn’t this kind of decision be driven by the science? If not, what kind of precedent does this establish for future funding decisions?

Second, is it ethical to conduct this research on MS patients? Research ethics demands that there be a degree of basic scientific evidence, such as studies on the possible biological link between CCSVI and MS, to support the move to research involving humans – this is particularly so when the intervention is invasive and has known risks. Moving to clinical trials before there is supporting data can result in missteps that hobble progress. This happened with gene therapy in the late 1990s, when patient Jesse Gelsinger died in a clinical trial that many believe was premature. The area of gene therapy is still recovering from that controversy.

Third, might support from provincial governments legitimize this currently questionable technique in the eyes of desperate patients, thus helping to buttress a market for the less reputable clinics throughout the world that are offering the treatment, often at a hefty price? There are reports of numerous, perhaps thousands, of Canadians travelling to receive the liberation “cure.” Given what the existing evidence tells us about efficacy, this trend seems both risky and, perhaps, an exploitation of vulnerable individuals.

The first reaction to any claim of a major medical breakthrough, especially for a complex disease like MS, should be healthy skepticism, flavoured with a dose of hope. I realize that this might sound crushingly cynical. It’s not. Healthy skepticism is at the heart of good science. And good science is an essential element of good health-care decisions. The surest way to determine whether clinical benefit can be derived from this new approach to MS is to study it in a rigorous and systematic manner, starting with basic research and then moving, if and when the data are sufficient, to clinical trials.

Timothy Caulfield is Canada Research Chair in Health Law and Policy at the University of Alberta."

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MP fights battle for MS sufferers across Canada

 
 
 
 
Not all of the estimated 75,000 Canadians with multiple sclerosis may know it, but they have a passionate advocate on Parliament Hill who vows to keep fighting for access to a controversial treatment for them.
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Barrie biz gets MS bus rolling

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par CCSVI in MS Toronto, vendredi 10 septembre 2010, à 20:44

Okay, I've had enough!!!

 

September 20th is "Liberation Day II" in Ottawa and since I can't make it there I will be protesting in Toronto at Queen's Park from 1-3 pm that day, please join me if you can!

 

Dawn Skinner

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N.S. health minister seeking national approach to liberation therapy for MS

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Psychiatrist: Clinical trial process should not be rushed

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Dear members of the MS community

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by Leslye Gower on "obtaining ethical approval".

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White Coat, Black Art

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WATCH OUT DANGEROUS! - Controversial wheelchair study done in Italy

 

Yves Savoie "Dear members of the MS community"

*Raising awareness and funds for CCSVI,
a liberation treatment for multiple sclerosis

*Raising awareness and funds for CCSVI,

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Fund 1,000-patient MS trial, McNeil tells NDP

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par CCSVI in MS Toronto, samedi 11 septembre 2010, à 04:35

The Hubbard Foundation multi-site research program, where they invited doctors who treat CCSVI to report results collectively, is full steam ahead. National IRB approval to back them up.

 

A quote from his son Devin: "38 patients treated so far. And over a dozen IRs across the country trying to get under our IRB. Should be past 50 by October."

 

Information for Participating in the approved Multi-center Registry for CCSVI Testing and Treatment:

On Sept. 2 the Hubbard Foundation received final, non-conditional, national IRB approval for testing and treatment of CCSVI (chronic cerebrospinal venous insufficiency) at locations around the U.S.

 

Interested physicians should e-mail hubbardfoundation@gmail.com and Alexandra will give you Dr. Hubbard's personal cell phone.

 

Referring Physicians:

Physicians with patients who may be appropriate for testing for CCSVI may contact the Hubbard Foundation to obtain the locations and contact information of participating catheter interventionists in their locale where patients may be registered for testing and if positive, treatment. 

 

Catheter interventionists:

Physicians trained in catheter venography and members or eligible for membership of the International Society for NeuroVascular Disease (ISNVD) are invited to become principal investigators (P.I.) by contacting the Hubbard Foundation. There will be a small fee per registered participant to maintain the IRB and database. It is our intent to have testing and treatment sites in every major metropolitan area.

 

Looks like a massive number of CCSVI Treatment sites are about to bust wide open in the USA.

 

Meanwhile back in Canada, the so called "experts" are still trying to brainwash everyone into thinking that simple angioplasty is so dangerous.

 

WaYnE

 

 

CCSVI Multi-center Registry:

http://www.hubbardfoundation.org/CCSVI_multi-centered_registry_introduction.html"


a liberation treatment for multiple sclerosis

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