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National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI) Bill

Second Reading—Debate Continued

On the Order:

Resuming debate on the motion of the Honourable Senator Cordy, seconded by the Honourable Senator Peterson, for the second reading of Bill S-204, An Act to establish a national strategy for chronic cerebrospinal venous insufficiency (CCSVI).

Hon. A. Raynell Andreychuk: Honourable senators, I rise to speak to Bill S-204, An Act to establish a national strategy for chronic cerebrospinal venous insufficiency; CCSVI, as it is known.

MS is a lifelong, disabling and often unpredictable illness. It impairs the ability of brain cells to communicate effectively with the spinal cord, causing physical and cognitive problems. Symptoms include fatigue, chronic pain, speech and swallowing difficulties, problems with muscle use and mental "fog." MS is usually diagnosed in people between the ages of 15 and 40. Two-thirds of those affected are women.

Canada has one of the highest rates of MS in the world. Every day, some 55,000 to 75,000 Canadians confront the crippling symptoms and emotional anguish of a disease that is poorly understood. Tens of thousands more Canadians count MS sufferers among their friends and families. They shoulder the challenges of the disease through loss of income, increased medical expenses, lower quality of life and family stress.

For years, experts have sought to understand the causes of MS and to develop treatments to improve the lives of those it affects. In Canada, such efforts have been undertaken by federal agencies, such as the Canadian Institutes of Health Research, research centres in our universities and teaching hospitals, professional associations and other organisations such as the Canadian Institute for Health Information, the Multiple Sclerosis Society of Canada and the Canadian Network of Multiple Sclerosis Clinics.

In 2009, MS science and research were set on a new trajectory following the publication of a study by the Italian vascular surgeon Dr. Paolo Zamboni. Dr. Zamboni found a strong correlation between MS and a condition known as chronic cerebrospinal venous insufficiency. CCSVI is a narrowing of the veins in the neck that impedes outflow of blood from the brain and spinal cord. By applying a procedure known as venous angioplasty to open up the affected veins, Dr. Zamboni achieved significant results.

The MS patients in his study reported improvements in sensation, strength and coordination. Famously dubbed the "liberation procedure," the therapy was internationally acclaimed, bringing hope to MS sufferers around the world. Two years later, health scientists have not been able to reproduce Dr. Zamboni's results.

Medical professionals today agree that the discovery of the liberation procedure represents a critical step forward in our knowledge and approach to MS research. They also agree that it is neither a cure for MS, nor a risk-free treatment with guaranteed results.

Health professionals in Canada emphasize that the liberation procedure applies venous angioplasty in a new portion of the body — the internal jugular — where the practice is considered both invasive and potentially dangerous. Evidence from patients, including Canadians, who have undergone the liberation procedure around the world, shows that the therapy can have vastly different results from one patient to the next. Many have reported relief of their symptoms, but others have reported only temporary improvements or no noticeable change. In the worst cases, patients have reported a deterioration of their condition.

Before making the liberation procedure a standard treatment in Canada, it is critical to establish, through recognized scientific processes, its safety and effectiveness for treating MS, such as Canada does in other cases. Allow me to quote from the Canadian Network of MS Clinics:

The MS community has seen and heard of many "treatments and claimed cures" over the years, which have usually turned out to be false. Until the observations regarding CCSVI can be verified and the potential treatment based upon these findings is shown to be safe and effective the CNMSC strongly recommends that patients DO NOT seek to have their veins studied by techniques that have not been standardized, nor should patients be asking for treatments based on these findings that have not been proven.

One of the reasons Canada has one of the best health systems in the world is that the medical establishment in this country does not react impulsively every time a new treatment comes onto the market. Rather, our approach is to build upon apparent medical breakthroughs. This entails investigating evidence surrounding the new treatment, applying our own ethics and standards, and conducting further research to fill any gaps.

As stated on their website, Health Canada's goal is:

. . . for Canada to be among the countries with the healthiest people in the world.

To achieve this goal, Health Canada:

. . . relies on high-quality scientific research as the basis for [its] work.

This is the stage at which CCSVI and the liberation procedure are presently being handled. Our health experts are taking necessary steps to bridge remaining gaps in the science around the liberation procedure to ensure Canadians are given the safest and best treatment modern science has to offer.

Canadians understandably want answers as quickly as possible, but the time spent building evidence around CCSVI and the liberation procedure — and this could take two or three years — is time well spent by those who wish to be sure.

Let me give honourable senators an example. Many of you will have seen in the news recently that Health Canada suspended its conditional approval of the breast cancer drug Avastin. It took this step after reviewing data from clinical trials showing that life-threatening risks associated with the drug, including heart attacks and strokes, outweigh its potential benefits. These benefits, it turns out, do not include reduced tumour size or longer life expectancy.

This story underscores the critical role of science in establishing that new medical procedures and products meet the standards of safety and efficacy observed by the medical establishment in this country.

The Government of Canada has taken important steps to build the evidence base around MS, CCSVI and the liberation procedure: First, working with a range of Canadian stakeholders, including provinces, territories and medical professional associations, last September the Government of Canada established the Scientific Expert Working Group to look at the linkages between MS and CCSVI.

Second, in March of this year the government announced that it would commit $2 million toward the creation of a standardized Canadian Multiple Sclerosis Monitoring System. The system will track patients' health and symptoms over time, including from those who have undergone the liberation procedure abroad, and furnish critical information to be used by all those involved in the fight against MS.

Third, in June this year Health Canada promised to fund phase 1 and phase 2 clinical trials, to establish the safety and side-effects of the liberation procedure.

On November 25 of this year, Health Canada announced that the Canadian Institutes of Health Research, in collaboration with the MS Society of Canada, is ready to accept research proposals for these trials. In the coming weeks, research teams will compete for funding. Their submissions will be assessed by an international peer review committee and the successful proposal will be announced in March 2012.

Meanwhile, resources are already being mobilized toward MS research in the provinces, including in Newfoundland and Labrador, the three Prairie provinces and in British Columbia. My own province, Saskatchewan, counts more than 3,500 people living with MS, giving it the highest MS prevalence rate of any province or territory in Canada.

In October 2010, the Government of Saskatchewan became the first in Canada to commit funding to CCSVI research.

A total of $5 million was committed to help Saskatchewan MS patients participate in clinical trials of the liberation procedure.

In the coming months, some of this funding will enable between 80 and 90 MS patients from all over the province to participate in clinical trials of the liberation procedure in Albany, New York.

In this manner, Saskatchewan is helping Canadians who so choose to access the liberation procedure relatively close to home, while advancing science around CCSVI.

It is doing so while putting measures in place to ensure that the patients are well informed about the treatment and the possible associated risks.

I applaud my province for taking this initiative, for helping Canadians who need it most to access the liberation procedure under the safest conditions possible, until such time as the procedure is approved in Canada.

Now, let me be clear: While I see such provincial initiatives as complementing the efforts of the federal government, they by no means alleviate the federal government's responsibilities in this matter.

The federal government is uniquely positioned to coordinate knowledge on the scale needed to achieve the scope and speed of advances in MS research.

As I have said, it has committed to doing so through establishing a national monitoring system and funding clinical trials.

In moving the second reading of Bill S-204, Senator Cordy described the bill as a mechanism to pressure the government to deliver on these commitments.

Much as I respect and share Senator Cordy's intent, I do not believe a bill is the correct mechanism.

I am concerned that this good intent could create an unintentional precedent and a modality in this chamber that I believe falls outside of our purview.

First, I believe that Bill S-204 risks politicizing the process through which scientific experts set Canada's health research priorities.

Second, I believe Bill S-204 could set a precedent of legislating deadlines on action to which the government is already committed.

Third, and most concerning to me, Bill S-204, in my opinion, goes beyond the normal scope and mandate of our legislative responsibilities.

In Fraser v. P.S.S.R.B., Justice Dickson wrote in 1985, and I quote:

There is in Canada a separation of powers among the three branches of government — the legislature, the executive and the judiciary.

In broad terms, the role of the judiciary is, of course, to interpret and apply the law; the role of the legislature is to decide upon and enunciate policy; the role of the executive is to administer and implement that policy.

The federal public service in Canada is part of the executive branch of Government. As such, its fundamental task is to administer and implement policy.

I am concerned that by requiring specific actions to be completed by specific deadlines, Bill S-204 goes beyond law-making into the realm of policy administration and implementation.

I believe that MS patients in Canada deserve access to the safest and best treatment modern medicine has to offer.

Once the liberation procedure has been fully proven to meet these criteria, I fully support making it available to Canadians suffering from MS. However, I believe we in the legislative arm should not interfere in the process by which health policy experts ascertain the safety and efficacy of a medical treatment.

I also believe we should not create legislation for which, if its requirements are not met, no clear course of redress for patients would be available.

Whom can Canadians hold accountable should clinical trials not be completed by the deadline stipulated in the bill? As we would be the ones introducing it, how do the patients reach us for redress?

We need to allow Canadian health experts to continue their accelerated efforts on this issue to establish the safety and efficacy of the liberation procedure and the link between MS and CCSVI.

Now, I know that Honourable Senator Cordy has, in addition to Bill S-204, also moved an inquiry on the government's progress in making the liberation procedure available in Canada.

I congratulate her on that effort. It is through such an inquiry, rather than through a bill, that I believe we in the Senate can encourage progress on MS and CCSVI in Canada.

Honourable senators, we should encourage an approach that will preserve Canada's standing as a centre of world-class medical research, in which citizens have access to the best and the safest treatment, rather than the latest fad.

Let us chart an approach that ensures that science, not politics, delivers the relief that MS-affected Canadians deserve.

Thank you.