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.