National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI) Act

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

This bill was last introduced in the 41st Parliament, 1st Session, which ended in September 2013.

Sponsor

Kirsty Duncan  Liberal

Introduced as a private member’s bill. (These don’t often become law.)

Status

Defeated, as of Feb. 29, 2012
(This bill did not become law.)

Summary

This is from the published bill. The Library of Parliament often publishes better independent summaries.

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.

Elsewhere

All sorts of information on this bill is available at LEGISinfo, provided by the Library of Parliament. You can also read the full text of the bill.

Votes

  • Feb. 29, 2012 Failed That the Bill be now read a second time and referred to the Standing Committee on Health.

National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI) Act
Private Members' Business

February 15th, 2012 / 6:40 p.m.
See context

Liberal

Carolyn Bennett 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.

National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI) Act
Private Members' Business

February 15th, 2012 / 6:50 p.m.
See context

Conservative

Joy Smith 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.

National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI) Act
Private Members' Business

February 15th, 2012 / 7 p.m.
See context

NDP

Christine Moore 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.

National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI) Act
Private Members' Business

February 15th, 2012 / 7:10 p.m.
See context

NDP

Pierre Jacob 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.

National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI) Act
Private Members' Business

February 15th, 2012 / 7:20 p.m.
See context

NDP

Malcolm Allen Welland, ON

Madam Speaker, I am pleased to join the debate.

I know I am not supposed to say these sorts of things, but let me turn and acknowledge my good friend from Etobicoke North for introducing the bill. I greatly appreciate it. I thank the hon. member in my father's name.

May father died from MS. If he were still alive, he might not have been able to have this treatment because of the type of MS he had. He had what is colloquially known as rampaging MS, which means he never plateaued. He continually got worse along a continuum that looks like a curve going straight up to the sky. After being diagnosed, his last 10 years of his life was a misery. Along with that misery came acceptance. As he once told me, “Someone dealt me some cards and this is the hand I have to play, but no one dealt the hand for your mother. She has to play the same hand I have because she is my life partner”.

That is what this is about. It is about saying to families like mine that there may be hope and that we should find out if there is. We are not sure; this is not an absolute. In life we hear the old adage about absolutes: death and taxes.

My father was happy to pay his taxes from the time he turned 14 and went to work in Ireland, and he was happy to pay them in this country when he showed up in 1962. However, he died too young because of a disease for which we had no cure. Along that continuum, the quality of his life depreciated because there were no other treatments.

If he were alive today, he would say to me, “This treatment will probably not help me, but it ought to be available to someone else who may be helped by it”. He would say that because of what he and we knew his life was: a living hell.

This was a man who worked all his life from the time he was a boy. He went to the shipyards as a boy. He was 14 years old. He came to this country because he ran out of work in place where there was no longer any, and so he brought his family here, including me. When it came time for him to enjoy the last part of his life with my mother, his life partner, in retirement, he was robbed of that and so was she because of this disease.

There are colleagues, both in this Parliament and the last Parliament, whose family members are afflicted in the same way, maybe not to the same degree as my father was, but who indeed suffer from MS.

My friend from York South—Weston told me earlier about his brother, and I know there are other members on the other side who also have family members with MS. They should do this for them. They deserve that. They deserve no less than that.

We have an opportunity, not to wave a magic elixir, because there is none, but there is a clinical trial that has been requested and we should do it.

We literally have thousands of folks, Canadians who have left this country to have the procedure in other countries around the world. Now that they have come home, we can study them. We can see how they are doing. We can see where they were before, because they were being given the usual treatment regime: drugs. Drugs, between morphine and all the others he had to take to try to numb his pain, basically numbed my father into a semi-comatose state half the time. Do not let other have to suffer this. Do not let them have to go through what he did.

I do not wish anyone else the life I had in watching the one my father had to lead. It was agony for us to watch, let alone the agony my father endured as an individual, as stoic as he was. He had bruises from one end of his shin to the other because he kicked the coffee table so much to make that pain worse than the pain of MS.

Here we have an opportunity to say to people, “We want to give you a chance”. That is all it is, a chance, no more than that. It is a glimmer of hope, no more than that.

The one thing my dad and all other MS sufferers over the decades never had was hope. They knew when they were diagnosed, that was it. The best the MS Society, and all the other folks who do the good work they do, could give them was drug therapy.

I watched my mother become an advocate like I have never seen before. Members should see what happens to a little Scottish woman when she decides that her life partner is going to get the best care she can possibly find. They would not want to get between her and it, if she thought her man should have it. There is no way in the world anyone could get between them. If anyone tried, that person would get run over. All four feet, eleven inches of her would knock a dozen people down and the next dozen as well.

My mom would tell my dad's physician that she wanted my dad to have the treatment that she had found on the Internet, treatment that was being done in Europe and South America, even though the physician said it would not work for my dad. She would tell the physician that he had not idea, because he was shooting in the dark.

That is what physicians do with MS patients. They will tell patients to try this or that because it might work, but they do not know for sure because they cannot measure it. The next time a patient has an attack, the physician does not know if the patient is any better off or if the attack is less serious than the previous one. They do not know because doctors cannot measure it.

MS is a symptomatic disease. There certainly are things that happen. People end up in wheelchairs and constantly have pneumonia. They eventually end up with congestive heart failure. If they are lucky like my dad they will manage to survive the first attack, even if they have no resuscitation order in place. My dad managed to get through that attack. How many others did not? How many others have died because we did not give them some hope? How many others are giving up?

Some of those with MS are young people. My dad used to say that he was lucky because he got MS late in life. He would see others, vibrant young folks in their twenties and thirties with it, whereas he was diagnosed when he was nearly 60 years old. He said he was the lucky one. I do not know how he ever had the courage to say he was the lucky one to have MS late in his life. I do not have the faintest idea how, but he did. I do not think anyone can be lucky, regardless of the age they get it at. It is not a lucky life to have.

However, what we can do for those folks who are suffering is to give them some hope. We should not let them give up, because that is what happens with this disease. It saps the energy out of them. It eventually saps the life out of them. It dulls any sense someone has about going forward. People with MS have no sense that they can go forward, because they know what the end will be. The journey along the road to the end is literally a living hell.

We must give them some hope; that is all we are asking for. The bill asks no more than for us to say, let us do the proper science. It is not about voodoo. It is not about snake oil. It is about doing the proper science. It is about ensuring that the treatment is adequate and correct for those who need it, because not every sufferer will fall into the protocol. They know that. There are lots of them out there who think this treatment will not work for them and that they should not get it. Not all of them are saying they want it, just that they hope this is something that will help. There is no question about that. All one has to do is to talk to them.

I was in the grocery store the other day with my wife, and a couple came by whom I thought I recognized. Sure enough it was the couple I thought I knew. The wife had been to South America to have the treatment. The last time I had seen her she was using a walker. This time she was walking. Her husband was pushing the buggy with the groceries in it and she was walking beside him without any assistance.

That is why we should give these people hope. That is why we need to support the bill.

National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI) Act
Private Members' Business

February 15th, 2012 / 7:30 p.m.
See context

NDP

Mike Sullivan York South—Weston, ON

Madam Speaker, I am very pleased to join this chorus of caring Canadians who believe that Canada is a place where medicine should be the best in the world, and that we should not be holding back.

I want to applaud all of the speakers so far today, as well as my friend from the riding just north of me for introducing this bill and being such a strong and passionate advocate.

All I really want to do is to talk about some of the true life stories that go unsaid.

During the election campaign, I talked to a constituent who probably was not going to vote, but I spent a good hour talking to him. He was desperate to get Botox injections in his legs so he could go back outdoors. His muscles were so frozen that he was like a stiff board lying on a bed, unable to move any part of his body but his index finger and his eyes. He was able to play video games on a computer a friend had set up for him, but that was all he could do: move a mouse very slightly with his finger and watch with his eyes. He could still speak and think, but he was trapped in his body. He wanted desperately to have another set of Botox injections, which the Ontario government was not going to pay for, so he could get in a wheelchair and be pushed outside to breathe fresh air again. That was not going to happen and it was absolutely tragic. I do not know if this treatment would help him, but he did not have that opportunity.

A friend of mine was diagnosed just a few months ago. She went through a series of very odd, unexplained dizzy spells and various strange events that were ultimately diagnosed as multiple sclerosis. She is in her late thirties or early forties and is absolutely terrified by what this prognosis means, by what is coming. When I talk to her, that is one of the things that I realize most about this disease, that everyone who gets it knows what is coming. Everyone who gets it is absolutely terrified by being that frozen figure trapped on a bed, able to move only a finger and an eye. That is what they all know will happen.

This treatment has provided, for the first time in centuries, some kind of measurable hope. The government members sit there and suggest that this should be held back from Canadians, from people who want this little bit of hope. These people are going to get it anyway. As a result, all that we are doing is creating an industry in the United States and other countries around the world that should be here.

I want to talk about my brother who was misdiagnosed about 10 or 12 years ago when he had eye trouble and went for an MRI. The doctors then did not tell him anything because his eye troubles kind of went away.

Two years later he went for another MRI because he was having trouble with his hands. The MRI technician asked him why he was back. He asked what the technician meant by that. The technician asked if the doctor had told him what he had. The MRI technician knew, but the previous doctor had not said anything to him. He had MS and the MRI technician knew he had MS.

I watched my fit, capable, active brother, Chris, deteriorate badly, mostly over the past four years. He has two young children, John and Delphine, and a wife, Sue. I then watched him have hope because he went for the treatment in Albany, New York a year and a half ago. Before the treatment, he was in a wheelchair full time, could no longer walk and was deteriorating. Since he has had the Zamboni treatment, he is now moving around in his home, albeit with a walker sometimes. He still gets tired. It is not getting better than that, but it is so much better than it was. He prays every day and thanks God for someone having discovered this treatment. His family do the same.

He is not what he used to be, but there are legions of stories of people who have had improvement from this treatment. The members opposite sit there and oppose it and suggest that somehow we need a few years of more study. In those few years, thousands of people will die of this disease and thousands more will succumb to further degradation of their limbs and their bodies. If that could be prevented, stopped or arrested we would be doing those people a service. To refuse that treatment to Canadians whose lives might be affected is despicable. I do not have another word for it. It is not what Canada's medical system is supposed to be. It is not what Canada's medical system should provide. We should be doing everything we can to provide what is clearly a safe and effective treatment.

I again thank the sponsor of the bill, who will now get to wrap this up.

National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI) Act
Private Members' Business

February 15th, 2012 / 7:35 p.m.
See context

Liberal

Kirsty Duncan 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”.

National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI) Act
Private Members' Business

December 8th, 2011 / 6:30 p.m.
See context

Liberal

Kirsty Duncan 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.

National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI) Act
Private Members' Business

December 8th, 2011 / 6:45 p.m.
See context

Oshawa
Ontario

Conservative

Colin Carrie 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.

National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI) Act
Private Members' Business

December 8th, 2011 / 6:45 p.m.
See context

Liberal

Kirsty Duncan Etobicoke North, ON

Mr. Speaker, I have never politicized this issue. I asked for the science and it took the government 10 months to create a registry and 13 months to accept clinical trials. All I have ever asked is for the science.

This is from the leading doctors in North America, signed by Drs. Sclafani, Siskin, Hubbard, Haacke, McDonald. They say:

We regard your Private Member's Bill... as a critical step forward in understanding CCSVI's role in MS as well as other neurodegenerative diseases such as Alzheimer's and Parkinson's disease. Tens of thousands of Canadians stand to derive significant benefit from the treatment of CCSVI and hence every effort must be made to avoid costly delays and duplication which will ultimately deny those in greatest need the timely, affordable and efficacious treatment they deserve. We strongly believe that the actions laid out in your Bill C-280 are essential in order for the Government of Canada to conduct clinical research into CCSVI.... As such, we urge all Members of Parliament to vote in favour of your Bill.

I will just say that Canada is not a leader. The U.S. already has three phase II clinical trials under way, approved by the FDA.

National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI) Act
Private Members' Business

December 8th, 2011 / 6:45 p.m.
See context

NDP

Mike Sullivan York South—Weston, ON

Mr. Speaker, I want to read something I got from an MS sufferer today whom the good member for Etobicoke North knows. The person states, “Canadians who have this disease are dying at the rate of one per day. Yes, we need studies but let's not abandon those people when we can act now and save lives. Yes, study it as soon as possible to help people like me walk again. Don't take a doctor's licence away if he or she saves someone's life. If these people are good enough to be guinea pigs, why are their lives not worth saving, if they are at death's door?”

I understand that the doctors you have talked to have said very clearly that your bill is actually a good thing. Can you expand a little further on that?

National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI) Act
Private Members' Business

December 8th, 2011 / 6:50 p.m.
See context

Liberal

Kirsty Duncan Etobicoke North, ON

Mr. Speaker, I would like to quote again from the leading experts in North America in this field who say:

We strongly believe that an adaptive phase II/III trial will allow for a fast and effective research path to get the answers we all need regarding CCSVI. To do otherwise would waste what little time many Canadians with this disease have left in their search for improved quality of life and be unforgivably wasteful of taxpayer's money during these difficult economic times. Let us be very clear on this point; the many scientists and clinicians comprising our Scientific Advisory Board, all internationally recognized for their expertise in this area, stand firmly behind your position that the safety of CCSVI angioplasty has been well established and therefore anything less than an adaptive Phase II/III trial would be unconscionable.

National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI) Act
Private Members' Business

December 8th, 2011 / 6:50 p.m.
See context

Oshawa
Ontario

Conservative

Colin Carrie 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.

National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI) Act
Private Members' Business

December 8th, 2011 / 6:55 p.m.
See context

NDP

Anne Minh-Thu Quach Beauharnois—Salaberry, QC

Mr. Speaker, I want to acknowledge the importance of the bill being introduced today by the hon. member for Etobicoke North. Nearly 75,000 Canadians live every day with multiple sclerosis, a very debilitating, chronic autoimmune disease. Canada has one of the highest incidences of MS in the world: one person in 500 is affected by the disease. In Canada, three people are diagnosed every day and the disease often strikes people in the prime of life.

Multiple sclerosis is a complex and incurable disease, and the cause is not yet fully understood. It attacks the central nervous system and is characterized by episodes during which symptoms disappear or reappear. Living with multiple sclerosis means living with many physical disabilities. Symptoms include vision problems, muscle pain, tingling or numbness in the extremities, loss of balance, impaired speech and sometimes even partial or total paralysis.

Although multiple sclerosis is incurable for now, medical research has found drugs for managing the symptoms. Some treatments help reduce the attacks and slow the progression of the disease. However, the drugs are often quite expensive and are not always covered by insurance. Life for those with MS is very difficult. Finding out that you have a chronic, incurable disease when you are 18, 19, 20 or 35 and that you will have to live with its effects for the rest of your life is painfully difficult.

The hon. member for Etobicoke North spoke about the discoveries made by an Italian doctor, Dr. Paolo Zamboni. In 2009, he published a study that seemed to show that multiple sclerosis might be linked to poor blood circulation in the neck veins. The Italian researcher called this problem chronic cerebrospinal venous insufficiency, or CCSVI. His study raised the hopes of many who suffer from multiple sclerosis.

Other studies have been conducted in a number of countries to try to establish whether there is a link between venous insufficiency and multiple sclerosis. Some clinics in the United States, Poland and Italy have begun unblocking veins to help alleviate patients' suffering. The procedure, which is called angioplasty, has produced astounding results in some cases. Patients say that their symptoms decreased by 50% to 80%. In some cases, they regained some of their mobility. Other patients, however, did not experience any beneficial effects. In addition, at least two Canadian patients who went abroad to receive treatment died as a result of the procedure.

One of the problems with the CCSVI treatment is the lack of international standards. Techniques vary, as does the quality of treatment. Private clinics that offer treatment are not all supervised. It is also important to point out that researchers do not agree on CCSVI. Some articles confirm Zamboni's hypothesis, while others refute it, which is why it is important to conduct clinical trials, as called for by the member for Etobicoke North.

In June 2011, a few months ago, the federal government announced that it would provide funding for the first two phases of clinical trials. On November 25, it launched a request for research proposals, some 13 months after the initial request made by the hon. Liberal member. The research team will be selected in March 2012. It will not begin its trials until May 2012. That is an extremely long time from now. It is far too long.

In a phase I trial, a small group of people is selected to evaluate the safety of the procedure. Phase II trials are performed on a larger group of patients and are designed to assess the efficacy of the procedure. We look forward to getting reliable results. The government could have launched clinical trials as early as 2009, but it took the opposition's insistence for the government to finally take action. Patients are waiting. It is time to act.

The government says that we have to trust the scientific data, and that is precisely what we are asking it to do, to trust the scientific data and to proceed as quickly as possible with clinical trials conducted by health researchers. The government has to move on this as soon as possible. It has to show political will and leadership on this matter, which is vital to thousands of patients in Canada alone. Until there is a cure for this disease, we have to help those living with multiple sclerosis and their families.

Many people who have MS must use a wheelchair to get around. We know that there are still many barriers to mobility in our buildings. Some people have to renovate their homes, others have difficulty finding suitable housing, and still others even have to live in long-term care facilities. Daily life is not easy.

Despite the disease and its symptoms, many people continue to work, some full time and some part time. In order to lead an active life, they often have to count on help from their loved ones. Our society should recognize that care. There are a number of things we could do to support people who have MS and their families. For instance, the federal government could make employment insurance sickness benefits more flexible so that people who have MS can work part time without losing any income.

The government could also offer refundable tax credits to people with a disability and to family caregivers. Many family caregivers have also been calling for tax benefits, given their very difficult financial situation.

Society as a whole must engage in the fight against MS. Canadian researchers must advance the science and find a cure for this disease. Our governments must commit to supporting not only research, but also the people who have the disease in their quest for a healthy life.

We therefore support the bill introduced by the member for Etobicoke North. We hope it will pass quickly and that the government will manage the clinical trials effectively in order to find solutions to this terrible disease as soon as possible.

As I said earlier, the government must show political will and leadership so the scientists can begin the clinical trial process and so that MS patients can finally have access to Dr. Zamboni's treatment, or any other treatment that is proven safe, effective and reliable by our experts in health research.

National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI) Act
Private Members' Business

December 8th, 2011 / 7:05 p.m.
See context

Liberal

Hedy Fry Vancouver Centre, BC

Mr. Speaker, I am pleased to support the bill brought forward by my colleague from Etobicoke North.

I will not go into the statistics or the number of people in Canada who are living with MS. I will not go into all of the details of the misery of their lives and the tragedy of the quality of their lives because everyone has spoken about that and it is known, as we all know.

I want to speak about a fact that the member was talking about. One of the aspects of a quality health care system is that the people who need that health care system get the best possible quality of care when they need it in a timely manner.

We know that with the advent of CCSVI many people who live with MS are desperate. They are living with a debilitating disease that, in fact, can cause them to become completely dependent on others over a short period of time, depending on how the disease affects them as individuals. People are desperate to maintain their quality of life, their mobility, their ability to work, and be producing members of society. Therefore, when something comes up that promises to help them, and when it is shown that in some countries and in some areas of the world people are being helped, everyone wants to know what to do.

It is the responsibility of Health Canada and the Government of Canada to ensure that those patients know what the results of a particular trial, drug, therapy or intervention are, as well as whether there are side effects, so that they know what those side effects are, and also the effectiveness of the therapy or intervention. It is very important for the government to move quickly on this.

In the spring of this year, which is a long time ago, the Liberal Party with the member for Etobicoke North stood and asked for clinical trials to begin in this country. The foot-dragging that went on in the last two days of proposals going out for clinical trials is appalling, considering it affects the quality of life of those people afflicted with MS and their ability to live normal lives. Six or eight months is a long time in people's lives. To have to wait that length of time is, without putting too fine a point on it, insensitive, although I could use other words.

Now the trials have been set out and proposals are being asked for, but they are phase I and phase II proposals. The phase I proposals, as we have heard, are small proposals that look at the safety of the particular intervention or drug. The second phase obviously looks at the effectiveness or the efficacy of that intervention, drug or therapy.

There is a third phase that the member is asking for, which I think is key because it does a comparison of the effectiveness of the new drug procedure or therapy against the ones that have already been in existence. Is it better, is it achieving better results, and will it be more beneficial to patients if they have access to it or not? That is a very key part of clinical trials.

That is not being done and I need to know why. It astounds me that it is not being done because if we are to adopt something, let us say it is proven safe and the effectiveness is good, then one needs to be able to give patients the information so that they can give what is known in medicine as informed consent. They know what they are comparing, what they are looking at, what they are facing, and they are able to make reasoned and informed choices. Patient information is a cornerstone of good quality of care. That is the second thing that the member is asking for.

However, there are other things the member is asking for. Right now people are, in fact, desperate and going out and participating outside of the country in areas where CCSVI is available. We know that there have been some side effects. We know that in some cases patients have only been helped temporarily. We know that when some of those patients come back here, they are treated as if they are pariahs. They are not allowed medical care. They are not allowed assistance that they may need when they have those side effects.

It is like a punitive measure that says, “How dare you go off and try something because you're desperate? Well, if you do that we're not going to take care of you when you come back”. That is the sort of callous and punitive measure that I think the member is fighting against. She is saying that if people went to Switzerland to ski, broke their leg, and came back to Canada, they would get treatment or physiotherapy in Canada.

Why are we discriminating against this group of patients who, out of sheer desperation, because of a great deal of foot-dragging from the government, have been unable to get the answers they seek and the information they want about clinical trials?

That is one of the most important things that she is asking for. She also wanted to talk about tracking individuals who have received clinical trials in multiple centres across Canada so that we can have an information base. Then we would be able see how people are responding. We would be able to see long a response takes, the differences in response, the factors that help people respond sooner or later or better and the progression of the treatment.

Tracking those aspects is an important part of patient information, of patients knowing what they are choosing and why they are choosing it, and of understanding all the side effects, positive or negative, on different people across the country. When doing a clinical trial, phase I deals with a small group and phase II has a somewhat larger group, but when the drug or intervention or procedure is put out there, it deals with a very large and diverse population, and that population, in all its diversity, needs to be tracked to see how it is responding. That is an important piece of patient information. It is a sort of postmark or surveillance to use in deciding whether this procedure is worth doing.

The member is asking for urgency in all of this. The member was suggesting that by March 1, 2011, we set up an advisory panel to be composed of experts who have been or who are actively engaged in imaging or treating individuals with CCSVI, as well as one patient advocate who has been a patient and who has had CCSVI. In this way we would have a group keeping track of the issue and advising the minister of the best way to go about changing things. I think urgency is what I am hearing, and I think this lack of urgency is what is concerning the member and most of us.

At the end of the day, if we are going to provide the best health care to Canadians, we are going to have to do our homework. We are going to have to invest in good trials, trials that will give the information people need, and that includes a phase III trial. We are going to have to look at post-introduction of procedure surveillance. We are going to have to have an open place where people can track and understand side effects and understand what is going on.

We are going to have to treat these patients, regardless of whether they did or did not have CCSVI, as patients who deserve equality and equity of care and access to care when they need it.

There is urgency, and there are some very concrete steps that the member has asked for in this bill. I hope that we will hear more than lip service about caring for patients, more than lip service suggesting that we want to do the right thing. There is a lot of lip service going on around here; let us see some action.

I want to thank my colleague for bringing in this bill. I give it my wholehearted support.