Bill C-280 (Historical)

National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI) Act

An Act to establish a National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI)

This enactment requires the Minister of Health to convene a conference with the provincial and territorial ministers responsible for health for the purpose of establishing a national strategy to ensure clinical trials are started for the treatment of chronic cerebrospinal venous insufficiency (CCSVI) and to estimate the funding necessary to undertake those clinical trials in Canada and to track individuals who have been treated for CCSVI.

[Matt Jeneroux, Conservative, Edmonton Riverbend, AB]

Thank you, Mr. Chair.

Minister, while in opposition, you were a vocal advocate of a controversial CCSVI treatment. Its founder, Dr. Zamboni, claims that it improves the lives of patients with MS by widening their veins to allow for better blood circulation to the brain. You presented Bill C-280 in support of a national CCSVI strategy and claimed to have attended seven conferences on CCSVI, presented at three, and spent close to 100 hours reviewing MRIs and watching the procedure.

A study was recently done at UBC on this treatment. The lead neurologist, Dr. Traboulsee, concluded that there was absolutely no difference—no smidgen of a difference—between the group treated with the CCSVI treatment and the group treated with placebos. In light of this study, and in light of the fact that you're now science minister, has your opinion on CCSVI changed?

National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI) Act

[The Acting Speaker, Conservative, Bruce Stanton]

It being 5:30 p.m., the House will now proceed to the taking of the deferred recorded division on the motion at second reading stage of Bill C-280 under private members' business.

Call in the members.

And the bells having rung:

The House resumed from February 15 consideration of the motion that Bill C-280, An Act to establish a National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI), be read the second time and referred to a committee.

Multiple Sclerosis

[Kirsty Duncan, Liberal, Etobicoke North, ON]

Mr. Speaker, 55,000 to 75,000 Canadians live with devastating MS. Tonight, all members will have the opportunity to vote their conscience, to do the right thing and to vote to develop a national strategy for CCSVI.

Sixty countries have undertaken 30,000 procedures, while Canada has failed to even begin clinical trials and failed to even begin collecting data, while 800 Canadians succumbed to MS.

North America's top doctors who diagnose and treat CCSVI, Drs. Hubbard, McDonald, Sclafani, Siskin, et cetera, support Bill C-280, as does Dr. Shannon, former deputy surgeon general, who lived through the restructuring of the Canadian blood system. He considers “the lack of definitive action on the part of governments, government agencies such as the CIHR and NGOs...extremely disappointing”.

Colleagues, as those living with MS say, “you know what the right thing is to do, do the right thing”.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

Mr. Speaker, I am pleased to present this petition regarding CCSVI as I am just back from delivering talks at the International Society for Neurovascular Disease conference.

Why does the government continue to ignore the evidence from over 30,000 CCSVI procedures, scientific studies from nine CCSVI conferences and returning Canadian MS patients? Why does the government continue to ignore leading physicians and researchers in North America: Drs. Haacke, Hubbard, McDonald, Sclafani, Siskin, et cetera, who strongly support my Bill C-280?

The petitioners call for the Minister of Health to consult experts actively engaged in the diagnosis and treatment of CCSVI to undertake phase III clinical trials on an urgent basis at multiple centres across Canada and to require follow up care.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

Mr. Speaker, I am thankful for the opportunity to speak to Motion No. 274, which essentially calls for information. Quite unbelievably, this information will not even begin to be collected until September 2012. That is 33 months since Canadians began travelling offshore for treatment. Even more unbelievably, this information will not be available for several more years. This is unconscionable, given that thousands of Canadians have already travelled for CCSVI treatments.

The motion also calls for the concerns and views of patients to be well-represented and heard. It is in fact essential that the views of patients are heard. That is why my bill, Bill C-280, calls for an advisory panel of medical experts in CCSVI, with an individual who has been treated for CCSVI to, among other things, advise the Minister of Health. My bill calls for real representation.

The reality is the government failed to hear world leading CCSVI experts and failed to hear Canadians living with MS. During this time, 800 Canadians died of MS and MS patients worsened on average by one EDSS, or disability score. It is unconscionable. Simply calling for being heard is grossly inadequate.

The questions members of Parliament must think about regarding Motion No. 274 are the following. Does this motion further advance the science of CCSVI? Does this motion do anything to ensure that proper health care is not refused to a person following treatment for CCSVI? Does this motion ensure that the Minister of Health works with the provinces and territories to ensure a comprehensive strategy for CCSVI? The answer to all these questions is no. The reality of the motion is it does nothing for patients and maintains the status quo.

In January 2012, 13 CCSVI advocacy groups, representing over 14,000 members, wrote to the Prime Minister and the Minister of Health and copied all members of Parliament, saying that Motion No. 274 “does nothing for science or for Canadians with MS and we oppose it”.

Those living with MS understand how the government has played politics with their lives. They understand that on May 2010, my colleague, the member of Parliament for St. Paul's and I were ignored when we wrote an open letter to the health minister asking for clinical trials for CCSVI and a registry. They understand that Dr. Zamboni, Dr. Simka and Dr. McDonald, the leading experts in the world on CCSVI, were ignored when they asked for clinical trials at the neurological subcommittee I founded.

Those living with MS understand that a top ranking CIHR official denied a registry in 2010 because it was outside the mandate. They understand that a top ranking CIHR official should have known what diagnosis and treatment was being undertaken in Poland in 2010, but did not because he had not done his homework, sadly, to the detriment of patients. They understand that the government failed to invite the leading international experts in CCSVI to the August 26, 2010, meeting. They understand that those who publicly criticized the validity of CCSVI were, however, allowed to participate in meetings, despite their bias. They understand that the government convened an expert group with no experts in the imaging and treatment of CCSVI and that the government failed to attend international scientific conferences, failed to undertake site visits to labs and operating theatres and blindly accepted a handful of studies.

Those living with MS understand that it was a cursory review at best by top researchers and that the government failed to review a large body of research, extending back to 1839. They understand that by the time of the August meeting, eight provinces and territories were pushing for action on CCSVI. Yet behind closed doors at the meeting there was a unanimous decision not to undertake clinical trials, despite the fact that both the presidents of the CIHR and MS Society were present and had previously been open to them and advocated for them respectively.

For over a year the process failed Canadians with MS and failed to meet the standards of the Canadian health system. It put in place a scientific expert working group with no scientific expertise or experience in CCSVI, which did not even declare conflict of interest until I pushed for it, which did not even undertake a comprehensive literature review until I pushed for it, and which analyzed interim and final results from seven studies funded by Canadian and U.S. MS societies for which we already had answers.

Finally in March 2011, 10 months after our initial request, the government reversed its position and announced a registry for MS. Collection of data will begin 33 months after Canadians began travelling overseas for treatment. Since when do scientists fail to collect data? As one Canadian neurologist who had the CCSVI procedure said to me, “If we had collected the evidence in a registry for the last many months, would we still be calling these anecdotal stories?”

Until November 25, 2011, all we had was announcements for clinical trials and a registry. Canadians with MS across this country understand the brutal, cynical politics of that week. They understand that M-274 was moved up to be debated before my Bill C-280. They understand that the motion does nothing for patients and keeps the status quo. They also understand, and are deeply offended by, the government's announcement for phase I and II trials to pre-empt this bill. They understand that it will take roughly three years to proceed with a phase III trial or a multi-centre trial with large patient groups.

In stark contrast to Motion No. 274, which maintains the status quo, my bill would call for action and accountability. It would call on the Minister of Health to convene a conference with the provincial and territorial ministers responsible for health for the purpose of establishing a national strategy for CCSVI. The national strategy would ensure that proper health care is not refused to a person following treatment, identify the most appropriate level of clinical trials for the treatment of CCSVI to place Canada at the forefront of international research, and estimate the funding necessary for clinical trials and for tracking individuals who have been treated for CCSVI. It would establish an advisory panel of experts in diagnosis and treatment.

Finally, politics continues to be played with MS patients' lives. I had my Bill C-280 moved up to be debated before Motion No. 274, as it should have been if the government had not pushed through Motion No. 274 before my bill was read in the fall.

Because the 13 advocacy groups were so afraid the government would once again play politics, they wrote to the Prime Minister, the Minister of Health and issued a press release saying that if the government moved Motion No. 274 ahead of Bill C-280, it would be playing politics with their lives.

I then invited all MPs and senators from all parties to attend a breakfast on February 14 with leading doctors treating CCSVI. I did this because this is a non-partisan issue; it is a humanitarian issue.

Those living with MS waited on tenterhooks to see what politics would be played next. The answer came on Friday, February 10 at 3:23 p.m., following the airing of theMS Wars: Hope, Science and the Internet documentary on David Suzuki's The Nature of Things.

That fair and balanced documentary included an interview with Dr. Gianfranco Campalani, a vascular surgeon who has seen marked improvements in his MS symptoms since his CCSVI treatment in 2007. He considered it unethical for doctors to deny treatment to those with CCSVI. The day after the program aired, the Minister of Health announced a briefing on MS on February 13 at 5:30 p.m. to pre-empt my breakfast on February 14 by a mere 14 hours.

Those living with MS and their families understand that this debate was never based on the science, as it should have been, but rather wilful blindness, medical politics and collusion with special interest groups. As a scientist and professor of health studies, I treated the issue as I would any scientific question. I went to the experts. I went to seven of nine international conferences and presented at three. I learned the science. Why did the government not?

I therefore beseech all MPs to do the right thing, to vote for action. MS patients say that we know what the right thing is. Let us do the right thing. Canadians with MS are waiting, getting sicker and in some cases dying.

National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI) Act

[Kirsty Duncan, Liberal, Etobicoke North, ON]

Madam Speaker, the government claims it has a moral and ethical obligation to work with the scientific and medical community and proceed only on the basis of the best medical and scientific evidence. The government has not pursued the best science or the leading experts and it has failed in its moral responsibility. The government has lagged every step of the way, despite the fact that 400 people die each year of MS in Canada and patients worsen, on average, by one disability score each year.

Twenty-one months have passed since our initial request for clinical trials. Since 2009, when treatment for CCSVI was first announced, 800 Canadians will have died from MS-related complications or suicide, while the government has ignored the science. Thirty-three months will have passed by the time the government implements a registry.

Sadly, I hear speeches loaded with highly questionable material from the government. Comments are scripted because no member of Parliament or government official ever attended one of nine CCSVI international conferences, never heard the data, never reviewed MRIs, never witnessed the procedure. As a scientist and health professor, I will have attended seven of the conferences by this weekend, presented at three, and spent close to 100 hours reviewing MRIs and watching the procedure. Those living with MS and their families understand that this debate was never based on science, as it should have been, but rather wilful blindness, politics and the government's self-preservation. I chased the science. Why did the government not?

The government makes the ridiculous claim that Canada is leading internationally, but this is absolutely not the case. The government has been lagging both the provinces and internationally. Sixty other countries are testing and treating CCSVI. The United States is currently conducting three FDA-approved phase II clinical trials, while the government just put out a request for a phase I/II trial.

The government made claims about the scientific evidence to support CCSVI, yet failed to acknowledge or present any of the international data regarding MS patients' improvements and quality of life following CCSVI treatment, nor the efficacy and safety of the procedure. For example, Dr. Petrov reports that 63% of his 461 patients show a functional improvement.

It has becoming increasingly apparent, from multiple countries around the world, that every patient is different, with different venous anatomy, a different course of MS, a different length of illness and some patients do experience improvement in symptoms. Dr. Mehta studied 150 consecutive patients who showed more than a 25% increase in quality of life scores a year after the procedure was measured by a doctor who did not know that the procedure had taken place.

The government claims that most of what I am asking for in Bill C-280 is already under way. This is absolutely not the case.

First, follow-up care remains a problem today and has not been adequately addressed. Patients are still being denied appointments and tests are being cancelled. Driver's licences are even being threatened if patients dare ask to pull out of drug trials.

Second, phase I/II trials will not put Canada at the forefront of international research.

Third, funding for trials has not been provided.

Fourth, there is no expert advisory panel in place with people who have actually done diagnosis or treatment. Importantly, as all members of Parliament and Canadians know, the dates can and will have to be amended at committee.

We have a duty to speak for those who cannot. This means listening to those who are awaiting CCSVI treatment, those who have had treatment and learning as much as we can about the science. Thirteen Canadian CCSVI patient groups, representing over 14,000 people living with MS, have written to the Prime Minister, the Minister of Health and all MPs asking that they support Bill C-280.

Finally, I ask my colleagues to be a true, honest voice for suffering MS patients and their families and to vote for Bill C-280. Patients say, “You know what the right thing is. Do the right thing”.

[Pierre Jacob, NDP, Brome—Missisquoi, QC]

Madam Speaker, it is with gravity that I am taking part in the second reading debate of Bill C-280, introduced by the hon. member for Etobicoke North.

MS patients must face many obstacles in their daily lives. These include physical obstacles that affect their mobility and financial obstacles that force them to make choices that can be difficult.

Multiple sclerosis is a disease whose causes are still not well understood. It attacks the central nervous system, particularly the brain, the optic nerves and the spinal cord. The symptoms of the disease vary and they affect between 55,000 and 75,000 Canadians. Incidentally, Canada is one of the countries most affected by this disease.

The wording of the bill stresses the fact that every year 400 Canadians die from MS. Moreover, the suicide rate among MS patients is seven times higher than in the general population. Therefore, we have a responsibility to help these people.

Multiple sclerosis, which has been considered an autoimmune disease, became the subject of a new medical theory put forth in 2009 by Italian doctor Paolo Zamboni. According to him, poor blood circulation in the neck veins has an impact on neurons, which triggers MS symptoms. In other words, multiple sclerosis was no longer treated as a disease but, rather as a symptom of a condition that this doctor called chronic cerebrospinal venous insufficiency, or CCSVI.

This study has generated hope among many people living with MS, as well as comments from health care professionals. Many additional studies were conducted to establish a link between blood circulation in the neck veins and multiple sclerosis, through a medical procedure called angioplasty.

However, the results remain inconclusive. Some patients saw their condition improve to the point where their MS symptoms diminished by 50% to 80%. However, in the case of other patients, that procedure did not change anything. Some private clinics all over the world, including in Bulgaria, Poland and the United States, now offer that medical service. In fact, a number of Canadians and Quebeckers affected by MS have travelled to these countries to have the operation, in the hope of improving their health.

Despite the merits of this bill, I want to share some reservations with the House. Scientific studies accepted by the entire international medical community—in order to examine the effectiveness of this treatment and corroborate Dr. Zamboni's theory—might be the first step before the treatment is generalized.

This bill to establish a national strategy for CCSVI does make provisions for further research.

Nevertheless, I want to draw the attention of my colleagues to other measures that could accompany this strategy, namely: integration of the Canadian Institute for Health Information's Canadian multiple sclerosis monitoring system into this strategy, since the purpose of this system is to provide medical follow-up to people with this disease; consideration of the reduced mobility of people with MS in order to facilitate their daily lives and, therefore, the renovation of public buildings to make them wheelchair accessible; implementation of financial assistance for these people in order to help them adapt their homes to their needs as they change with the disease; revision of the employment insurance sickness benefits program, both for people with the disease and for caregivers; implementation of refundable tax credits for those same people; and, finally, implementation of an awareness campaign on the importance of sports for people with multiple sclerosis.

On that last point, the Université de Sherbrooke offers a program for persons with MS. This program began in 1992 and has changed and been incorporated into another program: the adapted physical education and sports program for persons with physical disabilities. The sports component adopted by the university to help improve the physical condition of people with MS is unique and serves as a model for professionals and students from European countries.

As the hon. member for Beauharnois—Salaberry said, society as a whole has to fight against multiple sclerosis. Our Canadian researchers have to advance the science and find a cure for this terrible disease. Our governments have to commit to supporting research and also to supporting people with MS in their quest for a healthy life. In closing, I support this bill, which represents progress in the fight against multiple sclerosis.

[Christine Moore, NDP, Abitibi—Témiscamingue, QC]

Madam Speaker, I am pleased to rise to speak to Bill C-280. Before I talk about this bill, I would like to give an introduction so that people at home and my colleagues who do not have a medical background can better understand its implications. I will try to summarize it all so that people may have a better understanding of my opinion of this bill.

First of all, we cannot talk about a bill like this without briefly explaining what multiple sclerosis is. I will try to explain it in the simplest terms possible and using analogies, so people will really understand.

Multiple sclerosis is a disease in which the myelin covering the spinal cord, which is the nerve cells that transmit electrical signals in the body, is damaged and lesions, also known as plaques or scleroses, are formed. To give an analogy, it is as if the insulation covering electrical wires were to break down and lesions were to form in some areas. If there is no longer any insulation on an electrical wire, the electricity goes every which way and is lost. If the electricity is not properly conducted and dissipates throughout the body, it causes problems with everything that the nerve cells govern. It causes mobility, vision and various other problems. That is why people with multiple sclerosis experience so many symptoms.

To date, the exact cause of multiple sclerosis is not known. There are hypotheses such as CCSVI or auto-immune activity. We know that genetic susceptibility plays a role. Some think that it could be caused by an unidentified virus but, right now, no one knows the exact cause of multiple sclerosis.

Demyelination, which corresponds to the loss of insulation covering the electrical wires, is caused by inflammation. T lymphocytes, white blood cells that circulate in the blood, are no longer able to leave the brain, re-enter the blood and travel around the body. This causes inflammation that, little by little, attacks the myelin sheath that covers the nerves in the brain.

Chronic cerebrospinal venous insufficiency (CCSVI) occurs when the blood is no longer able to circulate effectively through the veins of the chest, neck and spinal column, which also prevents blood from draining from the brain. We know that blood always flows from the arteries to the veins. It leaves the heart via the arteries, goes to the brain, and returns to the heart via the veins. If the veins are no longer able to effectively drain the blood, it accumulates in the brain. The cells that cause the inflammation remain in the brain.

Knowing that, Dr. Zamboni began his research. He discovered a possible link between CCSVI and multiple sclerosis. He conducted statistical analyses and research, and studied X-rays, MRIs, ultrasounds and angiographies, which are all different X-ray techniques. He found that most MS sufferers—between 85% and 97%, depending on the diagnostic technique—had venous anomalies, so he came up with the idea of treating people with MS for CCSVI.

Early treatments began in several locations around the world. Venous angioplasty involves inserting a small balloon into the veins to prevent them from narrowing, to widen them. This is similar to cardiac procedures in which arteries are unblocked using a small balloon. This is a similar procedure. The treatment, which has been tested and is the subject of this bill, is a surgical procedure commonly used to treat other health problems. However, it is still surgery. As with any surgery, there may be risks that must be taken into account.

I should point out that MS is a very expensive disease. Current treatments are costly. There is no cure for MS, merely treatment of symptoms involving injections and medication, which is expensive.

I should also point out that this is a huge cost to the Canadian economy because MS affects young adults. The disease gets worse over time, but it shows up in early adulthood. If these adults did not have the disease, they could contribute to the Canadian economy by working and participating economically. Because of their disease, they cannot remain in the workforce. We have to understand that this disease is costly both to the economy and to individual MS patients. It is important to support research and treatments that can provide relief for people with MS because it is very costly to the Canadian economy.

As I explained, there is no treatment to cure the disease; we can only treat the symptoms. When we talk about a promising treatment, it obviously gives renewed hope to those who suffer from this disease, because it represents a chance for them to perhaps go back to work and lead a normal life. It is certainly very appealing to those people, because this is something they really wish for. The problem with clinical studies and such things is that we must take the time to do them properly. Such treatments can often seem promising at the beginning, but we do not know if, in the long run, they will actually produce the anticipated results. And when we are dealing with a debilitating disease such as this one, we must be careful not to give people false hope.

I will support this bill. However, we must take the time to conduct proper clinical studies, out of respect for those who suffer from the disease. As a government and as a country, we cannot afford to circumvent the proper procedure for a new treatment—which involves its assessment and validation—and administer that treatment without being convinced that it is truly effective and helpful compared to existing treatments. If we allow ourselves to speed up the process, we lose our credibility. It is really important to take the time to do things properly.

Incidentally, when we talk about a medical treatment, it must be understood that pressure is always exerted by lobbyists. In this context, it is critical to maintain our independence, to ensure that the treatment is good, to avoid yielding to the pressure of lobbyists, and to rely on verified scientific evidence.

Therefore, it is really essential that the clinical trials be done quickly, and that standard practices be followed, so that at last we can determine whether or not CCSVI treatments are effective and can be beneficial to MS patients.

I am asking hon. members to support this bill, but it is important to take the time to do the clinical trials properly, so as not to approve a treatment which may not be as effective as it seems.

[Joy Smith, Conservative, Kildonan—St. Paul, MB]

Madam Speaker, I am very pleased to speak to this as I chaired the subcommittee on this particular topic a couple of years ago.

I agree with the hon. member for Etobicoke North, as does the government, that Canadians with MS deserve to know whether the hope of the proposed new Zamboni or CCSVI procedure for MS rests on a solid scientific foundation, that it works and that it is safe. For that reason, I do not support this bill.

A key element of Bill C-280 is the legislative requirement that clinical tests on CCSVI be initiated. Regardless of the best advice being offered by scientists around the world, this House would begin legislating medical research. Supporting this bill could create a precedent as to how we establish our health research priorities. Setting health research priorities through legislation would not be an appropriate policy measure as it would jeopardize the independence of scientific decision making.

This bill would also require that the federal Minister of Health meet with her provincial and territorial counterparts to formulate a national strategy. The minister is already collaborating extensively with provinces, so why legislate that she has to do that? How would provinces react to such use of our legislative authority?

Another element of the bill would require that the Minister of Health ensure that those who have obtained the CCSVI treatment have access to proper health care. This is clearly an intrusion into provincial jurisdiction. Members of the House will know that the delivery of health care services is under provincial jurisdiction.

This bill is unnecessary. It would legislate a scientific and medical issue for which we already have a collaborative system in place. We in this House need to consider the implications of such legislation. Why would we legislate when extensive action is already underway? We need to use our legislative power prudently or risk diluting its value. Legislation should be used only when it is most appropriate and there are no other ways to achieve the desired policy objectives effectively. This is clearly not the case with this bill.

Let us take a moment to look at MS in Canada and the government's response to the proposed Zamboni procedure. An estimated 55,000 to 75,000 Canadians live with MS. We are all familiar with this number. Too many Canadians and their families are struggling with this frustrating disease. We in this House share their frustration. We also share their hope that effective treatments and, ultimately, a cure can be found. That is why the government is determined to support the investigation of CCSVI. However, this must be done carefully to ensure the safety of all Canadians.

As members of this House know, in June 2011 our government committed to supporting a clinical trial. On November 25, 2011, the Minister of Health along with Dr. Alain Beaudet, president of the Canadian Institutes of Health Research, announced that CIHR was ready to accept proposals for a phase I and phase II clinical test on CCSVI. Based on the independent advice of the scientific expert working group, CIHR formally opened the request for proposals in November 2011. Hon. members would be pleased to know that this research is a collaborative initiative between CIHR and the MS Society of Canada. The MS Society has told us that it supports further investigation of CCSVI.

Thorough investigation is the appropriate response with any new medical procedure. While this is difficult for many patients to hear, particularly those with a disease like MS, we need to ensure that procedures are safe before they are made available to Canadians. The principles of disciplined scientific investigation cannot be cast aside, despite the initial hope that has come with the procedure proposed by Dr. Zamboni. That would not be sound medical practice nor would it be fair to MS patients. A clinical trial is the first step. Clinical trials seek evidence on patient outcomes. The main objective of the forthcoming clinical trial will determine whether the angioplasty procedure on veins is safe and effective.

In the coming weeks, CIHR will establish an international peer review committee to review the research proposals it receives. CIHR will announce the successful research team in the coming months. It is critical to move at the appropriate pace on this important matter. An international scientific committee recently reviewed a proposal from Dr. Zamboni himself to conduct a large-scale clinical trial on CCSVI in Italy. The committee concluded that a clinical trial on the safety and efficacy of the proposed procedure should come first.

In other words, they concluded that a smaller scale trial is the way to go at this stage to ensure that the procedures are safe. This is exactly what we are doing right here in Canada.

Bill C-280 also calls for the establishment of an expert panel to advise the minister on the CCSVI treatment, identify criteria for clinical trial research proposals, and advise on the standards for diagnosing and treating CCSVI.

Why legislate this process, when a CIHR scientific expert working group has already been reviewing evidence on CCSVI from around the world for some time now? The working group, made up of scientific experts, reviewed studies of CCSVI published between 2009 and 2011. After doing so they recommended the launch of a request for applications for a clinical trial, and provided terms of reference to guide that research.

Bill C-280 also says that the expert advisory group should advise the government on CCSVI treatment standards. The scientific expert working group is already doing this. For example, in the fall of 2011, a group of experts identified the best procedures for standardizing imaging of veins in the neck and brain. These procedures will be incorporated into the design of the clinical trial. They will ensure consistent assessment of the presence of CCSVI in clinical trial participants.

The CIHR scientific expert working group is already advising the federal government on how best to proceed with regard to CCSVI and MS patients. Bill C-280 would require that the government track individuals who have received the CCSVI procedure. Here again the government has been out front on this issue.

In March 2011, the Minister of Health announced the creation of a Canadian MS monitoring system. This system will gather and share new knowledge on the use of MS treatments across Canada and their long-term outcomes. This information will be useful for Canadians living with MS, for the health care professionals who manage their care and for the researchers who are working toward a better understanding of this disease. The system is currently being developed by the Canadian Institute for Health Information, an independent organization that analyzes information on the health system and the health of Canadians. With information from the monitoring system, CIHI will produce results on the status of MS and its treatment in Canada.

The bill before the House also calls for a conference of provincial and territorial ministers to develop a national strategy. This is unnecessary. The government has been collaborating with the provinces and territories from the outset.

For example, members will have noted that the clinical trial announcement was made by the minister at the federal-provincial-territorial health ministers meeting in Halifax on November 25, 2011. CIHR is committed to working with the provinces and territories as it moves forward with the trial.

The deputy minister of health for Manitoba attends meetings at the scientific expert working group as a provincial-territorial representative.

To conclude, the government has already acted on the key elements of this bill. We have proceeded with prudence and caution to keep Canadians safe. We are relying on the best available scientific evidence. The initiatives implemented by the government have been supported by a wide range of stakeholders, including the MS Society of Canada. The MS Society has applauded the spirit of collaboration between the federal, provincial and territorial governments, and continues to support our work.

It is clear that the research evidence on CCSVI is mixed. In this respect, I would remind the House that well-intentioned medical therapies implemented without adequate research can and have led to unintended negative consequences for patients. That is why medical research has developed rigorous methodologies to test new theories. As legislators, we have a responsibility to allow that research to run its course. It is our duty as parliamentarians to ensure that these procedures are safe for Canadians.

The Government of Canada has put in place the steps to support ethical research, grounded in international standards of excellence. Like all Canadians, we are seeking to better understand the impact this procedure might have on the quality of life of MS patients. We have taken steps and opened dialogue in collaborations with provinces and territories, the medical community and representatives of MS patients.

This is the responsible and prudent approach that balances the need for action and patient safety. The government has a plan of action. Through federal leadership, funding and collaboration, it is moving that plan forward. Our government is acting to give MS patients the answers they need regarding CCSVI.

This bill would neither contribute to those answers nor improve the processes already underway to further our understanding of MS and CCSVI. Quite simply, most of what this bill asks for is already being done. What is more, in my mind, it raises real questions as to whether the bill would be an appropriate use of our legislative authority.

For all these reasons, while I understand and share the goodwill and intentions behind this bill, I cannot support it.

[Carolyn Bennett, Liberal, St. Paul's, ON]

Mr. Speaker, I am very honoured to rise here today to speak to Bill C-280, An Act to establish a National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI).

It is with sadness that I speak to the bill. This type of private member's bill should not be necessary. It is a shame that the time of this chamber is being spent on something the government should have done over two years ago, had there been any leadership.

The government's handling of this file has been a total disgrace. The government has demonstrated a total failure to provide the federal leadership that would have been able to move this forward. There has been a total failure on the part of the government to listen to the provinces and territories. Most important, there has been a total failure on the part of the government to listen to the patients. It is what my colleague from Mount Royal calls “the mobilization of shame”.

The briefing Monday night was one of the worst I have attended since I have been in this place, the Minister of Health taking the time of the president of the Canadian Institutes of Health Research to demonize a private member's bill that has the support of that very organization and of so many patients across the country.

There has been a pathetic attempt by the government to disguise its lack of action on this issue in a private member's motion to make it look as though it is doing something. However, all that motion does is ask to collect a bit of information that should have been collected.

I wish the Minister of Health had shown up Tuesday morning at the amazing breakfast, I think the fourth of such breakfasts, that was put on by the member for Etobicoke North, the author of this bill. If the minister had been there to hear Dr. Joseph Hewett, Dr. James McGuckin, and the amazing patient Linda Hume-Sastre, she would have understood how much we care about moving forward immediately on these actions.

My journey on CCSVI started almost two years ago, on March 29, 2010. I had been asked to attend a patient summit, which was to hear the voices of so many patients from all of the disease entities across the country to share some principles. Ironically, I was on the panel, “Is the Voice of Patients Being Heard?” After I stepped down off the stage it was time for lunch. A number of patients asked me if I would sit at their table. Around this table were patients and family members from British Columbia who were absolutely convinced that this new liberation procedure could help them. They described people who were on their way to life in a wheelchair, on their way to being bedridden, on their way out of this world. It was so poignant.

It was interesting yesterday morning when Dr. Hewett and Dr. McGuckin said that those of us who are trained as physicians sometimes have a great difficulty keeping an open mind and looking at things differently from the way we were trained in medical school or in the kinds of treatments that we would normally prescribe or try to get for our patients.

It was quite interesting. These patients and their families explained how this procedure seemed to be helping a lot of people. At that point, they were already trying to get that treatment outside of Canada. I think the theme we will hear this evening and from patients across this country is that they want to be treated here and they want to be treated now.

What is absolutely astounding is that I came back to this place and had a casual conversation with my colleague from Etobicoke North, who had already expressed quite an interest in neurological diseases, as we all know. She had attended a conference on CCSVI in February and had been looking into this potential treatment since November of the previous year.

From that time on the member for Etobicoke North has been a source of inspiration for all of us, but mainly the daily counsel for hundreds and hundreds of patients across the country. She keeps their spirits up. All of us here are impressed at how that one member of Parliament has had such an important influence on the lives of so many Canadians.

In May of that year, the member for Etobicoke North and I as the critic for health wrote to the Minister of Health asking her to support the MS Society's request for $10 million for research into the potential cause of CCSVI. Clearly at that time there had been controversy surrounding it, but we thought that Canadians deserved the facts. We were not saying that it definitely did or did not work, but we were very concerned that the people making that decision perhaps were not listening to patients about things like fatigue and brain fog, and that people felt immediately better if they were able to tell their stories.

It was very important at that time for people to get on with actual clinical trials. That is what people wanted. They wanted trials in which they could take whatever risk there was with the procedure and have it documented afterward. We were already hearing stories of people who had gone out of the country to get the treatment after being refused treatment by their own physicians. The member for Etobicoke North asked for an emergency debate on this issue, which was declined, but there was a take note debate. The subcommittee of the Standing Committee on Health held four hearings. It heard from Dr. Zamboni himself, Dr. Sandy McDonald and a number of important experts in this area from around the world.

Four hundred people per year die from multiple sclerosis. It is extraordinary. As we heard yesterday morning, if this possible treatment is being caught up in some turf war similar to what Dr. McDonald talked about, it would be the same as having to get permission from the electrician to do plumbing work in one's house. This is viewed to be a plumbing problem, that is, a cardiovascular problem as opposed to a pure autoimmune disease, in the purview of neurologists. We are asking that all in medicine work together in these trials in the best interests of patients. That means the turf wars have to stop.

On August 20 in another letter to the Minister of Health, we asked that this issue be placed on the agenda for the health ministers meeting in September. We hoped that they would listen to one another and that the federal government would take some leadership on this. Provinces like Saskatchewan had very clearly taken the lead.

I ask all members of the House to go to the website of the member for Etobicoke North to read the speech that she delivered on December 8 and her reply to the response by the parliamentary secretary and the member for Simcoe—Grey. Members should read the letter from the Canadian Coalition for the Study of Venous Insufficiency and consider its words, “As such, we urge all members of Parliament to vote in favour of your bill”. The coalition outlines the parts of the bill and why it supports it.

The House resumed from December 8, 2011, consideration of the motion that Bill C-280, An Act to establish a National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI), be read the second time and referred to a committee.

Multiple Sclerosis

[Ralph Goodale, Liberal, Wascana, SK]

Mr. Speaker, I have a petition to file today signed by a significant number of people across the central part of Saskatchewan expressing their concern for Canadians who are suffering from chronic cerebral spinal venous insufficiency.

The petitioners call upon the Minister of Health to consult with experts who have the necessary background in this field. They urge the Minister of Health to proceed with phase III clinical trials on an urgent basis. They also urge the minister to require follow ups of patients so that their actual experience can be tracked.

What these petitioners are calling for is very much the same sort of issue that is contained in Bill C-280, which is presently before the House in the name of the member for Etobicoke North. I hope the House will receive this petition favourably and also receive the bill favourably because that bill is headed in the right direction.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

Mr. Speaker, I am pleased to present this petition on CCSVI.

The government claims that most of what I am asking for in Bill C-280 is already underway, which is absolutely not the case. For example, follow-up care remains a problem today and has not been adequately assessed. Phase I and II trials will not put Canada at the forefront of international research. Funding for trials still has not been provided. There is no advisory panel composed of CCSVI experts. I would remind all hon. members that the dates in the bill can be amended at committee.

Therefore, the petitioners call for the Minister of Health to consult experts actively engaged in diagnosis and treatment of CCSVI to undertake phase III clinical trials on an urgent basis at multiple centres across Canada and to require follow-up care.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

Mr. Speaker, I have four petitions to present today.

The first one is on CCSVI. There is an absolute difference between my Bill C-280 and the government's position in terms of phase of clinical trials, start date for clinical trials, follow-up care and the need for experts.

The petitioners are therefore calling on the Minister of Health to consult experts actively engaged in diagnosis and treatment of CCSVI to undertake phase III clinical trials on an urgent basis with a large patient population not less than 100 people in multiple centres across Canada and to require follow-up care.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

Mr. Speaker, my second petition is regarding CCSVI.

The government claims most of what I am asking for in Bill C-280 is already under way. This is absolutely not the case.

First, follow-up care remains a problem today and has not been adequately addressed.

Second, phase I/II trials will not put Canada at the forefront of international research.

Third, funding for trials has still not been provided.

Fourth, there is no advisory panel composed of CCSVI experts.

Fifth, I am suggesting that clinical trials begin in Canada by March 1, 2012. The government is suggesting that CIHR announce the successful research team by then.

Therefore, the petitioners call for the Minister of Health to consult experts—

National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI) Act

[Kellie Leitch, Conservative, Parliamentary Secretary to the Minister of Human Resources and Skills Development and to the Minister of Labour]

Mr. Speaker, multiple sclerosis is a devastating disease. It attacks the nervous system and affects people's vision, mobility, balance, and ability to maintain a memory. Because MS is progressive, its course is highly variable and unpredictable. The emotional, physical and financial drain on those who are affected and on their families is immeasurable.

Many Canadians living with MS have shared their personal stories on how the disease has led to a loss of their autonomy. Many members in the House have friends or family members who have multiple sclerosis and are aware of the hardship that comes with living with this disease. I know members will share my view that MS patients and their families show tremendous courage in the face of such a difficult illness.

Sadly, there is no cure for multiple sclerosis. Current treatment is geared toward managing the symptoms and slowing the disease's progression.

In 2009 Dr. Paolo Zamboni, who is based in Italy, suggested that chronic cerebrospinal venous insufficiency, or CCSVI, could be a main cause of MS. To treat this condition, he proposed a surgical procedure, venous angioplasty, which involves opening up the blocked veins in the neck of the patient. Dr. Zamboni's findings, and those of other studies on CCSVI, have raised the hopes of MS patients, patient groups and members of this House.

Unfortunately, despite the interest that greeted Dr. Zamboni's procedure, it is clear that there is no immediate procedure for treating MS.

There are many unanswered questions on the safety and efficacy of this proposed procedure. There is also some uncertainty about the relationship between CCSVI and MS.

I understand the motivation of those who argue that there is no need for further evaluation of the safety of this proposed MS procedure. Each of us wants to ensure the best possible solution for Canadians living with MS. That said, the government and we in this House have a moral and ethical obligation to work with the scientific and medical community and proceed only on the basis of the best medical and scientific evidence available to us right now.

The government is not alone in this view. According to the MS Society of Canada:

Adding clarity to the relationship between CCSVI and MS is essential in assisting people with MS [to] secure any treatment they may consider.

The MS Society goes on to say that:

Medical institutions and health care providers require research data confirming the validity, necessity and safety of any procedure they provide, and in their view, that data is not yet available as it relates to the relationship between CCSVI and MS.

Even the MS Society of Italy, where this procedure was developed, announced in June 2010 that it intends to support an epidemiological study of CCSVI.

In September 2010 the Canadian Medical Association concurred with CIHR when they stated:

The CMA concurs with the CIHR's position on the need for an evidence-based approach to the development of clinical trials of the recently proposed condition called “chronic cerebrospinal venous insufficiency (CCSVI).

Dr. Anthony Traboulsee, a neurologist with expertise in the diagnosis and management of MS, expressed this sentiment very clearly when quoted recently by the British Columbia Human Rights Tribunal.

Dr. Traboulsee is the medical director of the UBC Hospital MS program, the director of the MS clinical trials research group, the president of the Canadian Network of MS Clinics and serves on the CIHR's scientific expert working group on MS. In a November 2011 decision, the tribunal quoted Dr. Traboulsee as follows:

New theories and new treatment proposals are welcome. However, in my opinion, based on the evidence available--both published and unpublished--I cannot recommend or support the use of venous angioplasty or stenting of the veins that drain the brain and spinal cord in patients with MS.

It is clear that experts in Canada and around the world are advising caution on this matter. Being cautious, however, does not mean we are not moving forward.

As a surgeon myself, I appreciate both the need for caution for the safety of patients as well as the need to drive forward with new ideas and innovation. That is why in 2010, a full year before Bill C-280 was introduced, the CIHR set up a scientific expert working group to monitor and analyze research-based evidence on the MS/CCSVI issue.

At its meeting in June 2011, the CIHR's scientific expert working group decided that enough evidence was now available to move forward with a clinical trial on the safety and efficacy of the procedure proposed by Dr. Zamboni.

The following day, the Minister of Health acted quickly and asked CIHR to develop a call for proposals for the clinical trials on that procedure.

I am pleased to advise the House that the call for proposals is now posted on CIHR's website. A competitive and rigorous peer review process will be completed by CIHR to ensure that the successful proposals meet international standards for research excellence. This review will likely be completed by early 2012. The announcement of the research team selected for conducting the clinical trials will come shortly after that.

Several provinces and territories have expressed interest in working with the Government of Canada on setting up the national clinical trial. It is scientifically and medically important to respect the different steps involved in the selection and approval of the research proposal to ensure that it meets the standards of research excellence.

As members can see, our government has already taken significant action. This is why we will not be supporting Bill C-280.

It is important to note that, if enacted, Bill C-280 would require by statute that our government undertake by March 2012 clinical trials on the procedure proposed by Dr. Zamboni. The bill does not specify whether these would be phase I, II or III trials. Surely the sponsor must recognize and realize that due to the legislative process this implementation date would likely come and go before both houses could consider the bill before us today.

It is crucial that we, as legislators, do not inadvertently interfere with the integrity of the clinical trials. We, like MS patients, their caregivers and medical professionals like myself, must respect the steps medical research requires in gathering the best evidence.

More importantly, I am pleased to report that during last month's meeting in Halifax, health ministers from across the country discussed the need for moving forward with phase I and phase II trials. Thanks to last month's announcement, that is exactly what is happening. By conducting rigorous peer review, our government is taking the necessary steps to ensure that the investigation of CCSVI will not have long-term negative repercussions on the health of Canadians living with MS.

Canada is not the only country striving to assist MS patients while also proceeding with appropriate caution. In the United Kingdom, the National Institute for Health and Clinical Excellence has launched a consultation process on venoplasty for CCSVI for MS. Its consultation document explains that the link between CCSVI and MS is not well understood and that research to resolve this uncertainty would be useful. The consultation process was completed in September of this year and will provide guidance to the institute as well as to the U.K.'s National Health Service on the safety and efficacy of CCSVI.

The fact of the matter is there are many unknowns regarding CCSVI angioplasty. We look forward to reviewing the findings from these and other highly credible institutions that are studying CCSVI. That is what the MS Society, prominent members of the medical community, provinces and international health care services have advised.

That said, let there be no doubt that this government shares the determination of MS patients and their families that new developments should be rigorously assessed and researched. It is our shared hope that this research will lead to medically proven, evidence-based procedures to improve the lives of patients with multiple sclerosis and ultimately to finding a cure for MS.

[Colin Carrie, Conservative, Parliamentary Secretary to the Minister of Health]

Mr. Speaker, it is my pleasure to rise in the House today to talk about the actions being undertaken by our government with regard to multiple sclerosis.

As a chiropractor practising in Oshawa for many years, I have had the privilege of treating patients who have suffered from this terrible disease. As such, I recognize, and our government recognizes, how difficult it is for people with MS and their families to live with this devastating disease.

This is why we are committed to advancing our understanding of this complex disease in order to develop the most effective treatments and, ultimately, a cure.

As members are well aware, Dr. Zamboni from Italy has proposed a new surgical procedure to treat MS called chronic cerebrospinal venous insufficiency, or the CCSVI procedure. The CCSVI procedure consists of opening veins in the necks of patients to relieve their MS symptoms.

The member for Etobicoke North has introduced Bill C-280 to legislate government action to establish, in collaboration with the provinces and territories, a national strategy on the CCSVI procedure. I need to stress that our government has already acted on a number of the initiatives proposed in the bill.

This past summer, the Minister of Health announced the establishment of a clinical trial on the CCSVI procedure. The Canadian Institutes of Health Research, or CIHR, is leading this federal initiative. In the coming weeks, CIHR will implement a rigorous and internationally peer-reviewed competition to select the team that will conduct this important research.

Our government has also been pleased to see the great interest that several provinces and territories have expressed in working with our government on this very important clinical trial. On that note, key stakeholders such as the Canadian and U.S. MS societies have also confirmed their commitment to collaborate on the proposed trial.

It is important to understand that the decision to move forward with a clinical trial must be based on scientific evidence. The CIHR scientific experts have recommended moving forward cautiously with a small clinical trial that would test the safety of the CCSVI procedure. Some people argue that the CCSVI procedure is a safe medical procedure. They have called on our government to move faster with a clinical trial on larger groups of patients.

We have to listen to what the experts have said on this matter. Experts from around the world are advising us to move cautiously. Researchers, including Dr. Zamboni himself, have called for further research on the safety and efficacy of the CCSVI procedure. A multidisciplinary panel of experts concluded at the June meeting of the United States Society of Interventional Radiology that there was not enough evidence on the specific parameters required to run a large-scale trial on the proposed procedure.

This panel recommended that “prospective safety and efficacy trials should be conducted in well defined and potentially smaller controlled populations”.

We also have to keep in mind that many Canadians have experienced complications following the CCSVI procedure. As indicated in a recent publication by Dr. Cal Gutkin from the College of Family Physicians of Canada, “Endovascular treatment is not without risk.” Hemorrhage and other complications have been reported.

Two Canadians who underwent the CCSVI procedure abroad died following the medical intervention. For all these reasons it is necessary to move cautiously with a well defined clinical trial on the safety of the CCSVI procedure. This trial will increase our understanding of the proposed treatment without putting the lives of Canadians at risk.

In this regard, I am very pleased that last month the Minister of Health and Dr. Alain Beaudet, president of CIHR, announced that CIHR is ready to accept research proposals for the phase I and II clinical trials on CCSVI. The request for research proposals is available on CIHR's website.

The second requirement outlined in Bill C-280 is to track MS patients who undergo the CCSVI procedure.

Our government, in collaboration with the provinces and territories, CIHR, the Canadian Network of MS Clinics and the MS Society of Canada, is already developing a Canadian MS monitoring system. This important initiative will provide individuals living with MS and their doctors with information to better understand this horrible disease.

As I already mentioned, Bill C-280 is also calling on the federal government to establish an advisory panel to advise the Minister of Health on the medical procedure proposed by Dr. Zamboni. Our government has already established such a panel.

Over the last 18 months a scientific expert working group established by CIHR has been reviewing research evidence from around the world on the CCSVI issue. The working group has made valuable recommendations to our government on the CCSVI issue. CIHRs scientific expert working group will continue to monitor and analyze new research evidence as it becomes available.

Bill C-280 also raises the issue of ensuring proper health care for MS patients who undergo the CCSVI procedure.

As members know, health care delivery is a provincial and territorial responsibility. Some provinces have developed guidelines to ensure that MS patients who undergo the CCSVI procedure abroad receive proper follow-up care here in Canada.

As an example, Ontario's minister of health and long-term care recently mandated an MS expert advisory group to produce guidelines on the follow-up care of MS patients. These guidelines are now available to all health care practitioners in the province of Ontario.

Our government has also worked in close collaboration with the provinces, territories and health professional associations to ensure that MS patients and their caregivers receive the most up-to-date research evidence.

For example, CIHR has been sharing research information related to CCSVI with health professional organizations, such as the College of Family Physicians, which has posted this information on its website and distributed it to all of its members.

A hotline service has also been established by our government to ensure that MS patients have access to the most recent information on MS.

Let me assure the House that we have already established strategic initiatives that will allow us to better understand the new procedure proposed by Dr. Zamboni to treat MS and MS patients.

These initiatives, along with other important MS-related research projects funded by the federal government, will increase our understanding of this devastating disease, and will lead to a more effective diagnosis, treatment, and hopefully, ultimately a cure.

Speaking for myself, I hope that this procedure is a cure for MS. But we all have to understand that it is up to us as legislators to work with the research community, not put unreasonable constraints on the research community and try to force research by legislation.

I think I speak for everyone in the House when I say that we would all like to work together to see what we can do to end this devastating disease. I want to thank the member for bringing up this issue again. She has done a lot of work to bring this issue forward to Canadians and Canadian families.

[Colin Carrie, Conservative, Parliamentary Secretary to the Minister of Health]

Mr. Speaker, I want to thank my colleague for all the work she has done to bring this very important issue to the forefront. However, I am somewhat concerned with her bill and about the concept of having politicians trying to legislate scientific research and trials. Even Dr. Zamboni, who started the procedure, says we need more scientific research.

Canada is actually leading internationally with what we are doing with our partners. Most of what the member is asking for in Bill C-280 is already under way. The deadline of March 1, 2012, for the launch of the trial is not realistic. These trials require rigorous peer-reviewed processes to meet international standards. We have already stated that funding will occur as researchers obtain approval from their own ethical boards, which is extremely important for the safety of Canadians.

Does the member not see that, for the safety of Canadians, it is a very dangerous precedent for politicians to start trying to force research and science by politicizing this issue? We should be working together.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

moved that Bill C-280, An Act to establish a National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI), be read the second time and referred to a committee.

Mr. Speaker, multiple sclerosis was, in her words, “quickly stealing her life”. In 2008 she began life in a wheelchair. In 2010 she had treatment for chronic cerebrospinal venous insufficiency, or CCSVI, to restore proper blood flow. Last week, she walked. She walked all day with her walker. In her words, “Damn, this is beautiful”.

In May 2010 my colleague, the member of Parliament for St. Paul's, and I wrote an open letter to the health minister, asking for clinical trials for CCSVI and a registry in Canada. We were ignored. There was no response.

I then had a four hour take note debate on CCSVI granted in June 2010. The neurological subcommittee I founded had four meetings on CCSVI. We heard from the leading international researchers, Dr. Zamboni, Dr. Simka, Dr. Haacke and Dr. McDonald. All said that clinical trials were need. This time the world's experts were ignored. The government did not budge.

In the summer, when I questioned a top-ranking CIHR official as to why we could not have a registry, he explained, “Because we don't know what is being done overseas”, and it was outside the mandate of the Canadian Institutes for Health Research, or CIHR. Why did he not know that in Poland, each MS patient is seen by a neurologist, has a doppler, an MRV, an eye test, pictures before and after the procedure and video of the actual procedure? Yet again, I was ignored.

Eventually the government put in place a political process to decide whether to go ahead with clinical trials.

In August 2010 the CIHR, in collaboration with the Multiple Sclerosis Society of Canada, convened a meeting of “top researchers”, with a special emphasis on neurovascular issues, including the recently proposed condition called CCSVI.

Why were international experts in CCSVI not invited to the August 26 meeting, given that all significant CCSVI research had been conducted internationally?

Why was Dr. Haacke not included, given that he is a world leader in imaging? Why was Dr. Simka, who by that point had performed more than 300 CCSVI procedures, not included? Why was no one with expertise and experience in treating CCSVI invited? Why were those who had publicly criticized the validity of CCSVI allowed to participate, given that they were biased?

It was an expert group with no experts in the imaging and treatment of CCSVI. Moreover, no data were presented from international scientific conferences, no site visits were made to labs and operating theatres, just blind acceptance of a handful of studies, including two which had been accepted for publication in an astounding six weeks.

One must ask why students were assigned to work on such an important literature review and what criteria the CIHR used to reduce the identified 19 PubMed studies to a list of just nine studies.

It was a cursory review, at best, by “top researchers”, particularly when two major conferences had taken place by August 2010 and over 1,500 procedures had been performed worldwide, with encouraging results in patients with relapsing-remitting MS and primary and secondary MS.

Astoundingly a large body of research examining the role of abnormal vasculature in MS was completely ignored, despite the fact that the CIHR was actually made aware of the long history of abnormal vasculature in MS in June 2010.

The first observations related to abnormal vasculature in MS in the literature appeared in Cruveilhier in 1839. Today there is extensive literature examining such areas as venous stenosis, cerebral hydrodynamics and venous hypertension, hypoxia, inflammation and cerebral plaques, vascular damage to nerves, as well as reduced perfusion and even loss of small vein visibility in MS.

Why was the information presented at the August 26 meeting regarding abnormal veins in MS and iron accumulation in MS brains omitted from the summary report?

By the time of the August meeting, eight provinces and territories were pushing for action on CCSVI. The president of CIHR was open to clinical trials and the president of the MS Society of Canada had asked for $10 million for clinical trials. How then could there have been unanimous agreement not to undertake clinical trials at the August 26 meeting when both presidents were in attendance at the behind closed doors meeting? Was it perhaps because on August 24 it was discovered that the president of CIHR did not have the money, that it was over committed by $10 million and that the Minister of Health would need authority from cabinet for new money?

On September 13 and 14, the federal-provincial-territorial ministers of health met in St. John's, Newfoundland. Who was present, what presentations and arguments were made regarding CCSVI, were all sides of the issue presented. Most important, why in some cases did provinces change their positions? Despite my freedom of information request, the list of expected participants at the St. John's meeting is blocked out, The list of experts is blocked out. The decision is blocked out. The considerations are blocked out.

Over the past 18 months, I have been personally in touch with over 1,500 MS patients across Canada. Of those, over 400 have now been treated and my data mirrors the international data, namely, one-third significantly improve, one-third moderately improve and one-third experience minimal to no improvement. Regardless, there are no drugs for the progressive forms of the disease and no drug has ever reversed the symptoms of devastating MS.

I receive three and four personal notes each week and innumerable phone calls detailing their progress. Many are primary and secondary progressive MS patients. Their changes include improved circulation, changes in the colour and temperature in their faces, hands and feet, a reduction in both searing nerve pain and constrictive pain, a reduction in brain fuzziness and improvements in motor function, vision and hearing. One Canadian said:

“I’m busting at the seams to let everyone know, I have... I had the...procedure...the benefits are phenomenal, my numbness on left side disappeared immediately, vision has improved tenfold...drop foot gone, fatigue gone. I walked the furthest I have walked in over two years 2 days after the procedure...benefits are PRICELESS.

How about the following? “I jumped, I jumped with my child”. “I wore a pair of shoes for the first time in three years. It may not seem like a big deal to you, but it's a big deal to me”. One man who has suffered for 20 years and walked with two canes has thrown them away and went horseback riding with his daughter.

I have asked hundreds of written questions of the government, I have hosted breakfasts for MPs and senators with Drs. McDonald, Hubbard and Haacke and with patients. I have attended six international conferences on CCSVI and no government official has ever attended one.

For over a year, the process failed Canadians with MS. It put in place a scientific expert working group with no CCSVI expertise or experience, which did not even declare conflicts of interest until I pushed for it, which did not even undertake a comprehensive literature review until I pushed for it and then published an article showing a relationship between CCSVI and MS 14 months after the August 2010 meeting. One must ask why an expert working group would have to contract out a literature review. It also analyzed interim and final results from seven Canadian and U.S. MS societies-funded studies, for which we already had answers.

While the government failed to put in place an expert working group, it did, however, manage to fast track in 2006 Tysabri, a drug which was known to cause a fatal brain infection. In a few short years, 181 people have acquired the infection and 38 have died as of November 1. Yet there was a hesitation to undertake clinical trials for angioplasty, a procedure undertaken daily in hospitals across the country.

Canadians with MS deserved science and they deserved evidence-based medical practices. Sadly, MS patients could not have evidence-based practices if their government refused to collect any evidence either through clinical trails or a registry.

Finally, in March 2010, 10 months after our initial request, the government reversed its position and announced a registry for MS, although no details or timeline were given for its implementation.

Tragically, tracking the patients will not begin until July, 2012, 31 months after Canadians began travelling overseas for treatment.

Since when do scientists fail to collect data? As one Canadian neurologist, who had the CCSVI procedure, said to me, “If we had collected the evidence in a registry for the last many months, would we still be calling these anecdotal stories?” This sentiment has been echoed by numerous physicians with MS who have had the procedure, who have written to me, although afraid for their careers, and have begged me to continue fighting because “the procedure works”.

On June 20, we welcomed the New Hope for MS Tour to Parliament Hill and we announced that we would table bills in both the House of Commons and the Senate, calling for a national CCSVI strategy and clinical trials. We were all enormously grateful to the caring, compassionate, tireless advocate, Senator Jane Cordy.

On June 28, CIHR's expert working group met and, on June 29, the Minister of Health reversed her position and announced clinical trials.

Up until two weeks ago, all we had were announcements for clinical trials and a registry. Canadians with MS across the country understand the cynical politics of two weeks ago. They understand that Motion No. 274 was moved up to be debated before this bill. They understand that the motion keeps the status quo.

Specifically, the following groups were against Motion No. 274: CCSVI Alberta/Edmonton, with 2,000 members; CCSVI in MS Toronto, with 3,200 members; CCSVI MS Nova Scotia, with 1,333 members; and CCSVI Ontario, with 422 members, totalling more than 7,500 Canadians with MS and their families.

MS patients also understand and are deeply offended by the announcements for phase I/II trials on November 25, which was to pre-empt this bill. They understand that it will take roughly three years to proceed with the phase III trial, or a randomized, controlled multi-centre trial with large patient groups. MS patients say that November 25 was a sad day for all Canadians living with MS. They are calling it “Black Friday”.

My bill calls on the Minister of Health to convene a conference with the provincial and territorial ministers responsible for health for the purpose of establishing a national strategy for CCSVI in order to: ensure that proper health care is not refused to a person on the grounds that that person is seeking or is obtaining the treatment for CCSVI outside of Canada; identify the most appropriate level of clinical trials for the treatment of CCSVI in Canada in order to place Canada at the forefront of international research; estimate the funding necessary to undertake those clinical trials in Canada; establish an advisory panel to be composed of experts who have been or are actively engaged in imaging or treating individuals with CCSVI; and ensure that clinical trials begin in Canada by March 1.

Leading CCSVI physicians and researchers in North America recommend an “Adaptive Phase II/III trial”. I have a copy of that letter here. They recommend that clinical trials for the CCSVI procedure occur in multiple centres across Canada with a large patient group.

Finally, I beseech, I implore the government to do the morally right thing and heed the science and undertake adaptive phase II/III trials. Eighteen months have passed since our initial request for clinical trials. On average, 400 Canadians die of MS each year. By the end of this year, 800 will have died from MS related complications or suicide, while the government ignored the science. Thirty-one months will have passed by the time the government implements a registry.

There is no excuse not to image. Imaging is safe. There is no excuse not to treat. Angioplasty is an established, low-risk standard of care. There is no excuse not to undertake clinical trials that would put Canada at the forefront of medical research.

Canadians with MS are waiting, getting sicker and, in some cases, dying. I am profoundly sorry that the government abandoned Canadians with MS in their hour of need. I am sorry that they had to beg for the health care they paid into all their lives. The government must fight for families, develop a national strategy and undertake adaptive phase II/III trials.

[The Chair, Conservative, Harold Albrecht]

Are there questions or comments on Bill C-316?

Seeing none, we'll move to Bill C-280.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

moved for leave to introduce Bill C-280, An Act to establish a National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI).

Mr. Speaker, my bill aims to establish a national strategy for chronic cerebrospinal venous insufficiency, CCSVI.

The bill calls for the minister to convene a conference with the provincial and territorial ministers of health to establish a national strategy, including: ensuring that proper health care is not refused to a person who is seeking or has obtained treatment for CCSVI outside Canada; identifying the most appropriate level of clinical trials for treatment of CCSVI to place Canada at the forefront of international research; estimating the funding necessary for clinical trials and tracking individuals who have received the treatment; establishing an advisory panel composed of experts who have been actively engaged in diagnosis and treatment of CCSVI, as well as an individual who has been treated; and ensuring that clinical trials begin by March 1, 2012.

I hope all hon. members will support this bill.

(Motions deemed adopted, bill read the first time and printed)