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.

National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI) Act

[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.

[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.

[Malcolm Allen, NDP, 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.

[Mike Sullivan, NDP, 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.

[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”.

[The Deputy Speaker, NDP, Denise Savoie]

The time provided for debate has expired. Accordingly, the question is on the motion. Is it the pleasure of the House to adopt the motion?

[Some hon. members]

Agreed.

No.

[The Deputy Speaker, NDP, Denise Savoie]

All those in favour will please say yea.

[Some hon. members]

Yea.

[The Deputy Speaker, NDP, Denise Savoie]

All those opposed will please say nay.

[Some hon. members]

Nay.

[The Deputy Speaker, NDP, Denise Savoie]

In my opinion the nays have it.

And five or more members having risen:

A recorded division on the motion stands deferred until Wednesday, February 29, 2012, immediately before the time provided for private members' business.