House of Commons Hansard #62 of the 40th Parliament, 3rd Session. (The original version is on Parliament's site.) The word of the day was research.

Topics

Multiple SclerosisGovernment Orders

7:50 p.m.

Bloc

Luc Malo Bloc Verchères—Les Patriotes, QC

Madam Chair, we are holding a take note debate on multiple sclerosis and the results of a clinical study by Dr. Paolo Zamboni, which has turned the MS world on its head. This is especially true in Quebec and Canada, which have one of the highest rates of the illness with approximately 1,000 new cases diagnosed every year.

First, it is my understanding that since 1868, when multiple sclerosis was first diagnosed by Dr. Jean-Martin Charcot, researchers and doctors have considered MS to be a neurological disorder where the immune system targeted myelin, the protective sheathing on the cells of the central nervous system. This is being called into question by an Italian researcher who now considers MS to be a vascular disease that can be treated with angioplasty surgery. This procedure may lead to a reduction of symptoms in those with the disease.

Dr. Zamboni, of the University of Ferrara in Italy, says that the illness is a disturbance of blood circulation characterized by the inability of the venous system to properly drain blood from the central nervous system. It is known as chronic cerebrospinal venous insufficiency, or CCSVI.

In April 2009, he published his first article on the prevalence of venous stenosis in patients with multiple sclerosis. He carried out angioplasties on 65 patients with various forms of multiple sclerosis whose veins were deformed or blocked. The procedure consists of removing blockages from the jugular veins, which are located on either side of the neck.

The news spread so quickly that in May 2009, Dr. Robert Zivadinov of the Jacobs Neurological Institute in Buffalo, New York, began a study of 500 individuals to verify the Italian group's results. His study showed that 56% of individuals with multiple sclerosis had venous stenosis, and 22% of those in the control group without MS had venous stenosis.

In order to understand the hope that such a discovery—even the rumour of it—can arouse, one must understand the reality of life with multiple sclerosis. The clock is ticking for these people. Their health could deteriorate anytime.

In response to pressure from patients, many doctors, neurologists and Dr. Zamboni himself recommended caution because the research involved only clinical trials. The MS Society also expressed doubts about the procedure and called for further research.

The main criticisms are that the technique is new, that the criteria require further confirmation, that the importance of the human element in carrying out the technique must be established and that it is important for these observations to be confirmed by other groups with larger numbers of patients with the disease.

This discovery was the focus of several sessions of the Health Subcommittee on Neurological Disease.

Every year, the Multiple Sclerosis Society of Canada holds meetings on the Hill to let parliamentarians know what the organization wants from the government. They were the committee's first witnesses.

The session dealt with issues that went beyond CCSVI. Then further sessions focused only on that aspect. For the past several weeks, several experts have testified, but people with MS have also delivered very emotional and hopeful testimony.

One critical player was conspicuous by its absence: Health Canada. Not a single Health Canada representative appeared before the committee, despite the fact that many of the witnesses were turning to the department. Members will surely agree that the situation is disturbing. I spoke to members of the subcommittee about this on May 11. I said:

Patients, a doctor and specialists have told us that we should focus on treating CCSVI. Others have said that the current state of science is not advanced enough to do that. Both sides are turning to Health Canada.

However, no Health Canada representatives could join us today to explain why the treatment is not currently offered.

Showing a complete lack of sensitivity, the department finally sent an email last Thursday to the clerk of the committee. I want to read it so that everyone can get a good idea of the challenges with this issue:

Decisions regarding new treatment procedures are medical questions that fall under the jurisdiction of provincial and territorial governments and administrations, health care professionals and health care institutions.

The federal government supports health research, which includes clinical research aimed at discovering and assessing new diagnostic treatment procedures. It does not make decisions or offer opinions on the relevance of new treatments that could be integrated into the provincial and territorial health care systems, and does not suggest any conditions that should be set. Questions regarding accessibility, delivery and funding of clinical services should be addressed to the appropriate health care authorities and professionals at the provincial and territorial levels.

It is of course rather disappointing for many people who are listening to the debate tonight to hear that response from Health Canada. However, that is exactly what it should be saying, given the existing constitutional framework. It is not up to the House of Commons Standing Committee on Health or to the Government of Canada to determine whether this treatment should be made available to patients.

So why are people who want to receive a diagnosis and treatment putting so much hope in an answer—hopefully positive—from this Parliament?

Is it because this Parliament—with the exception of the Bloc Québécois, which has always clearly stated that Quebec and the provinces have exclusive jurisdiction over health—has been inconsistent in its decision-making and is encroaching on this area of jurisdiction, sometimes using its so-called “spending power” and sometimes saying that if the provinces do not like it, they can take the matter to court?

Is it because Health Canada also uses this modus operandi, which, I would remind the House, is inconsistent, while taking its time in stating its intentions regarding this issue?

Is it also because the Subcommittee on Neurological Disease of the Standing Committee on Health scheduled a series of meetings without clearly defining its mandate and without assessing the repercussions of its work? We are not working in isolation. As parliamentarians, we must avoid disappointing people unnecessarily.

And so I am calling on the chair of the Standing Committee on Health to ensure that our work is more clearly defined in the future. I just hope that these brave and determined men and women—at a point where many have undergone or will undergo this surgical procedure overseas—who have come to speak with us will not feel that it was a waste of their time. I figure, and this is but a small consolation if there can be any at all, that these testimonies, including the one Dr. Zamboni will give tomorrow morning, are public and that the health professionals who will be making this decision can refer to them.

Perhaps there is still a solution at the federal level: research. For the Bloc Québécois, research is one of the most promising routes and it must be funded. Because of that, we are asking the federal government to substantially increase the budgets allocated to various research chairs in Quebec universities. That would allow for clinical teams to be established quickly and they could submit their application for the necessary funding.

What is more, in its response, Health Canada recognized the importance of health research, including clinical research, in establishing innovative procedures.

To conclude, in light of the context in which we are evolving, we invite those who have taken a stand during the debate to present their arguments to stakeholders in Quebec and the provinces. It is the provinces and only the provinces that can authorize this treatment. It is not up to us, and it would be disrespectful of people and of institutions to pretend otherwise.

Multiple SclerosisGovernment Orders

8 p.m.

Oshawa Ontario

Conservative

Colin Carrie ConservativeParliamentary Secretary to the Minister of Health

Madam Chair, I thank my colleague for his excellent speech and for his good work on the health committee.

I was wondering if he could give us his opinion in the area of research. CIHR has been funding a great deal of research on MS and to date it has funded $45 million in research on MS specifically. This new CCSVI is promising. I worked as a chiropractor for two decades and my patients who had this devastating disease were constantly looking for new hope and new treatments.

Could the hon. member comment on how the system works? In order to receive CIHR funds, researchers must apply and have their research rated excellent by a panel of peer reviewers. However, CIHR has not yet received applications in this area. The money is on the table but it has not received any applications as yet.

Could the hon. member comment on the procedure and how it should go forward, and whether he agrees with what we are doing at this time?

Multiple SclerosisGovernment Orders

8 p.m.

Bloc

Luc Malo Bloc Verchères—Les Patriotes, QC

Madam Chair, I thank the Parliamentary Secretary to the Minister of Health for his question. It is true that when we hear the testimony, we realize how urgent this situation is. We met with witnesses and people suffering from MS who believed their condition could deteriorate rapidly. Action is urgently needed, and research is therefore urgently needed.

But it is clear to the Bloc Québécois that research funding should be allocated primarily to universities under the jurisdiction of Quebec and the provinces. That is how we would like research to be focused.

My colleague will recall that when the CIHR was created, we had some concerns about respect for jurisdictions. I hope that these jurisdictions will be respected when research funding is allocated. My colleague was quite right when he said this research will have to be done quickly.

I was also glad to hear the minister say that research funding will be released very soon.

Multiple SclerosisGovernment Orders

8 p.m.

Liberal

Paul Szabo Liberal Mississauga South, ON

Madam Chair, like most members, I have received hundreds of communications from people and one just this past week from Mr. Yuri Korfschinsk who repeated the argument of the member for Etobicoke North about MS patients being discriminated against in terms of getting this treatment simply because they have MS and are at risk.

It was interesting that in his letter he says that the decisions to deny this treatment have resulted primarily based on the advice of MS neurologists, which is very strange to me. Their position was that the relationship between MS and CCSVI must be fully researched and documented before CCSVI can be treated in people with MS.

I wonder if the member is aware of whether neurologists have the requisite expertise to make that assessment and whether in fact they should be the authors of health care policy regarding CCSVI.

Multiple SclerosisGovernment Orders

8 p.m.

Bloc

Luc Malo Bloc Verchères—Les Patriotes, QC

Madam Chair, I thank my hon. colleague for his question.

I will say it again, and Health Canada was very clear in its response: it is not up to this Parliament to determine whether or not treatment can be made available. It is up to the scientific community and particularly the provinces and territories, because they are responsible for providing the public with quality health care.

Multiple SclerosisGovernment Orders

8:05 p.m.

NDP

Carol Hughes NDP Algoma—Manitoulin—Kapuskasing, ON

Madam Chair, that was very interesting.

My Conservative colleague mentioned that he was a chiropractor and that the services he offered to his patients with multiple sclerosis could help some of them in the meantime. That is how we see this treatment for multiple sclerosis.

Could my colleague tell us what he heard in committee from the people who have had the treatment? Can he describe the difference from before and after the treatment, based on testimony from Mrs. Webb, Mr. Garvie and, in particular, Rebecca Cooney?

Multiple SclerosisGovernment Orders

8:05 p.m.

Bloc

Luc Malo Bloc Verchères—Les Patriotes, QC

Madam Chair, my colleague is quite right. We heard very moving, very personal testimony at subcommittee from witnesses who told us about the helplessness they felt and how they regained control of their lives following treatment. As I was saying earlier, this testimony has been compiled in the committee records. So the people who are responsible for deciding whether this treatment will be administered, that is, those responsible in the provinces and territories, can certainly refer to those records when making their decision.

As I was saying earlier, in the context of our deliberations, we must not give the impression that this decision will be made here. That is not the case. And if our questions and our speeches give the opposite impression, this might create expectations that we cannot fulfill as federal parliamentarians.

Multiple SclerosisGovernment Orders

8:05 p.m.

Conservative

Patricia Davidson Conservative Sarnia—Lambton, ON

Madam Chair, I would like to thank my colleague opposite for his comments. He is certainly a valuable member of the health committee, and I have enjoyed working with him for several years now.

During his comments, he made the statement that any news, or even a rumour, gives immeasurable hope to those who are suffering from this disease. I could not agree more.

It certainly is a devastating disease. I think that many of us in this chamber tonight have family members or very close friends who have MS. I have a niece and a first cousin who both suffer from MS. To see the devastation it causes not only to their lives but to their families' lives is certainly not something that any of us want to see.

With respect to some of the comments that have been made here tonight, I know that Dr. Zamboni has said that the results of his pilot study warrant further research. The Alberta health ministry has said that further independent and controlled studies are required to prove, discount, or better understand Dr. Zamboni's study results. In Ontario, the Health Technology Advisory Committee has stated that preliminary evidence does not permit them to make any recommendations. They regard the treatment as experimental at this time. The MS Society is calling for more research—

Multiple SclerosisGovernment Orders

8:05 p.m.

NDP

The Deputy Chair NDP Denise Savoie

Order. I must give the hon. member equal time to respond. There is only one minute left. I apologize. The hon. member for Verchères—Les Patriotes.

Multiple SclerosisGovernment Orders

8:05 p.m.

Bloc

Luc Malo Bloc Verchères—Les Patriotes, QC

Madam Chair, my colleague did not have enough time to ask me her question. It seems silly to answer a question that has not been asked. However, she made reference to Dr. Zamboni. Tomorrow in the subcommittee we will have the opportunity hear Dr. Zamboni, who may shed new light on his study and his findings. For now, everything we know about Dr. Zamboni we read in the literature. I am anxious to hear his testimony tomorrow.

Again, my colleague is right to say that notwithstanding all our debates and our speeches, we know that life is not easy for people with multiple sclerosis.

Multiple SclerosisGovernment Orders

8:10 p.m.

NDP

Carol Hughes NDP Algoma—Manitoulin—Kapuskasing, ON

Madam Chair, for the past few weeks, the Subcommittee on Neurological Disease within the health committee has been hearing testimony from doctors and patients regarding the treatment of chronic cerebrospinal venous insufficiency, also known as CCSVI, as a method for treating multiple sclerosis.

According to a report from the MS Society of Canada, MS is a terrible disease that affects more than 50,000 Canadians. Currently, treatment for MS is largely drug-based and focuses on lessening the severity of symptoms. However, a new method, developed by Dr. Paolo Zamboni, has the potential to improve the lives of those suffering from MS.

In June 2009, Dr. Zamboni, an Italian doctor, published a finding about a possible link between vascular blockages in the veins responsible for draining blood from the brain and MS. He agrees that additional research is still needed, and so do we. It is evident that the research and testimony heard at committee amounts to a promising start. Just last week, the MS societies in North America announced the launch of CCSVI research project funding.

CCSVI is a disorder that causes blockages that reduce blood flow in the veins near the central nervous system.Canadians with MS are asking for the right to diagnosis and treatment. People not suffering from MS can gain access to both treatment and diagnosis for vascular blockages. Patients with MS are being discriminated against, because their vascular abnormalities occur in the brain, and they suffer from MS.

Canadians are currently looking outside of the country and are paying astronomical amounts of money to gain treatment in one of the 47 countries that recognize CCSVI. I have heard that the wait time to obtain this treatment in Poland is over three years and that a number of those on the waiting list are Canadian citizens.

Though research is not developed enough to conclude that CCSVI causes MS, the evidence of a connection between the two diagnoses is incredibly compelling. The procedure used to treat CCSVI, angioplasty, is not a new or experimental procedure. The procedure takes a matter of hours, and the patients are only under local anesthesia, making it fairly low risk.

It is also more cost-efficient than the drug treatments currently prescribed for MS patients. A witness in committee cited that in Canada, angioplasty costs only $1,500. The current costs to the health care system for medication for MS patients ranges from $25,000 to $40,000 a year. This does not take into account additional costs, such as assisted living services. If angioplasty as a treatment for CCSVI is successful, even in a few cases, the potential in savings for the health care system will be substantial, and MS sufferers may be well on the way to enjoying a better quality of life.

I was recently contacted by a woman suffering from MS who wanted to inform me of the continued injustices perpetrated against those with a diagnosis like hers. The test to diagnose CCSVI is a Doppler scan MRI, which was previously performed at the Montreal Neurological Hospital at the MS clinic. She called to inform me that there was a sign in the window of the clinic stating that they would no longer administer these tests, as directed by the college of physicians of Quebec. She has attempted to contact the hospital to hear their justification for the termination of the program but has received no response.

Why are we denying Canadian citizens the right to diagnosis? This is especially baffling to me, as the test used to diagnose CCSVI has been described as even less invasive than the procedure used to cure it. It is a scan, similar to an ultrasound. Dr. Sandy McDonald testified at committee that to the best of his knowledge, the test presents no risk.

Denying Canadians the right to determine whether they suffer from the disease seems especially extreme. I cannot fathom the cause behind this decision. Even if ties between MS and CCSVI are minimal, we are denying treatment to those suffering from CCSVI because they suffer from MS.

If it can be proven that patients have a vascular abnormality, why are highly trained doctors prohibited from fixing the diagnosed problem? If a patient has blocked veins, and treating this could improve blood flow, why should a doctor be prohibited from curing this disorder, even if it has little to no effect on MS?

Research into the ties between CCSVI and MS should be continued, buy why must research and treatment be mutually exclusive?

I hope to see research on this topic continue, but it is my sincere wish that the research subjects not be a few hand-picked individuals chosen because the symptoms of their MS meet specific criteria. Angioplasty is a low-risk procedure, when performed by an experienced hand, with a great deal of medical precedent. Rather, the treatment should be offered to all who are diagnosed with CCSVI, and research should be done on these cases.

The procedure has the potential to change the fate of those suffering from MS. Though the results are not yet conclusive, we as Canadians should not shy away from the potential of medical innovation. The point of medical research is to improve the quality of life for those who suffer from diseases. If this procedure is considered relatively safe, why should those suffering from MS now be forced to wait for additional tests if the new innovation could benefit them immediately?

I urge the government to support innovation in medicine and to make strides toward better treatment for those who suffer from MS.

MS affects patients in different ways, but for many, the future holds decreasing motor capabilities that will eventually lead to a wheelchair and the inability to perform basic daily tasks for themselves. Individuals who suffer from MS also have higher suicide rates than the rest of the population.

Though the procedure is not spoken of as a cure, the potential to give those suffering from MS a few healthy months or years should be held with high importance. By providing coverage to those seeking to determine whether they have CCSVI and to those looking to obtain the necessary procedure to cure it, there is the potential to improve thousands of Canadian lives.

The difficulties experienced by MS sufferers when attempting to obtain this treatment are especially troubling when one considers that Canadians have one of the world's highest rates of MS diagnosis. Every day, three more people in Canada are diagnosed with the disease. This is not an insignificant part of the population. This is a large group made up predominantly of women in their prime, whose lives and potential societal contributions are being stunted by this harrowing disease. If the potential to improve the lives of these individuals exists, assisting them in obtaining treatment is the responsible and compassionate thing to do.

I am sure that my colleague, the member for Burnaby—New Westminster, will make further comments on this issue a little later on, and I urge the chamber to support his motion, M-535, and to support medical research on the subject.

MS is a disease without a cure, and any reprieve from pain and suffering that can be gained through Dr. Zamboni's treatment is worth investigating. I look forward to hearing Dr. Zamboni's testimony in committee tomorrow. I hope that this chamber will grant sufferers of MS the ability to improve their quality of life.

I have been contacted by a number of my constituents, Lynn Gagnon in Elliot Lake, Dave McDowell in Elliot Lake, and Lisa in Manitowaning, Manitoulin Island, who have all indicated that any opportunity to try something that may assist them in relieving some of the symptoms or that may give them a better quality of life, whether it is for two months or two years or 10 years, is better than none, so they would appreciate the opportunity to be able to be part of the study and the treatment at the same time.

Multiple SclerosisGovernment Orders

8:20 p.m.

Conservative

Cathy McLeod Conservative Kamloops—Thompson—Cariboo, BC

Madam Chair, I certainly appreciated the comments I just heard, and I appreciated the comments I heard a little earlier from the Bloc member.

Certainly, the chamber acknowledges the importance of research and moving forward in a very rapid way in terms of ensuring that we have some appropriate research done. The member heard very clearly from the Bloc, and we certainly know, that the Canada Health Act requires provincial and territorial health insurance plans to provide medically necessary hospital and physician services. We also have the responsibility the provinces have in terms of determining what they cover and what they are going to do.

Has the member talked to the province in which she lives about what it is doing and where it is going to move this issue forward?

Multiple SclerosisGovernment Orders

8:20 p.m.

NDP

Carol Hughes NDP Algoma—Manitoulin—Kapuskasing, ON

Madam Chair, I can tell the member that we are in the process of touching base on everything we can with regard to this issue. As the member knows, we have heard on numerous occasions from witnesses how important and positive an impact this has had on patients.

Again, let me go back to Steve Garvie. As the member will recall, Mr. Garvie came before us and explained that he was a quadriplegic, basically. He could not wash himself. He could not feed himself. He was living in a long-term care facility or assisted living. When he came to the committee he was walking. He was able to drink and feed himself. It was quite emotional when he explained to us that he had to rely on someone else to wash him and how degrading that was for him. The fact that he is able to have that privacy now and he is independent really spoke highly of the procedure.

Let us talk about Mrs. Cooney. Mrs. Cooney first appeared at committee in a wheelchair. After the procedure, just a few weeks later when she came back to committee she was walking.

It is about ensuring that people have access to treatment but they are still part of the study. We are not denying the fact that there needs to be a study, but we are saying allow people the treatment and do the study while they are getting the treatment. It should not be about picking and choosing who is going to be in the study.

Multiple SclerosisGovernment Orders

8:20 p.m.

Liberal

Kirsty Duncan Liberal Etobicoke North, ON

Madam Chair, it is unconscionable to be fighting over jurisdiction. I will repeat that the federal government has a role to play and that it needs to take leadership.

I wonder if the hon. member could comment on whether it is fair that the liberation treatment, a simple surgery that sends a tiny balloon to a clogged jugular vein, is unavailable in Canada where it is considered experimental by health officials. Provincial health care plans will not fund it. Doctors will not perform it. This means patients are left in limbo. As a result they are forced to go to private clinics in Poland, Kuwait and India, paying upwards of $10,000. Is that fair?

Multiple SclerosisGovernment Orders

8:20 p.m.

NDP

Carol Hughes NDP Algoma—Manitoulin—Kapuskasing, ON

Madam Chair, the member is absolutely correct. Why should people go bankrupt to obtain a treatment that they could normally have here? What is unconscionable is that the treatment was available here and people were actually starting to get the treatment as soon as a diagnosis was received but all of a sudden people could not get it in Canada any more.

We are pushing to ensure that people are part of the study. We do not disagree that there needs to be more research. Let them be part of the study, but also allow them to get the treatment. There are doctors here who can provide that treatment. There are doctors here who can do the diagnosis. Why should people go abroad? It would be much cheaper for people to get the treatment here. If there is an improvement in their health, whether it is just in their circulation or whether they are able to get out of their wheelchair and walk, why is it that they cannot get the treatment here?

Multiple SclerosisGovernment Orders

8:20 p.m.

NDP

Jim Maloway NDP Elmwood—Transcona, MB

Madam Chair, I would be very interested in knowing how many patients Dr. Zamboni and others have treated at this point and what the results have been. What is the efficacy of the treatment so far? Has anyone died as a result of this treatment?

Multiple SclerosisGovernment Orders

8:25 p.m.

Conservative

Leona Aglukkaq Conservative Nunavut, NU

Yes.

Multiple SclerosisGovernment Orders

8:25 p.m.

NDP

Jim Maloway NDP Elmwood—Transcona, MB

The minister said yes. Has anyone been worse off as a result of this treatment? That would cause some pause if it is a very risky treatment.

I am sure there is some issue here with insurance companies because we cannot go very far in life without dealing with insurance companies. Certainly the hospitals and doctors have to answer to their malpractice insurers and this procedure would probably have to be approved by them.

I would like to know from someone here in the debate how many people have been treated, how many people have benefited, and how many people have had an adverse reaction or died. That would give us a better idea of where things are going. Ultimately, if the government does not get its act together in Canada, people are going to do what they are doing. They are simply going to get the procedure elsewhere.

Multiple SclerosisGovernment Orders

8:25 p.m.

NDP

Carol Hughes NDP Algoma—Manitoulin—Kapuskasing, ON

Madam Chair, that is a very important question. I am aware of two instances where there was a problem. One was that a stent was inserted and the stent was dislodged. It had nothing to do with the procedure that Dr. Sandy McDonald or Dr. Zamboni refers to. They do not use stents. The other problem had something to do with a blood clot. The family assured the doctor and the medical community that there were other underlying medical circumstances with the patient himself.

It is about having the right tools and procedure in place. Dr. Sandy McDonald certainly indicated that to us in committee.

Multiple SclerosisGovernment Orders

8:25 p.m.

Oshawa Ontario

Conservative

Colin Carrie ConservativeParliamentary Secretary to the Minister of Health

Madam Chair, I want to correct some of the statements that have been made this evening.

The government has been taking a leadership role. As a matter of fact, the MS Society announced seven new studies between Canada and the United States and four of those studies are actually taking place in Canada.

I am very hopeful that this therapy does work. However, there have been a lot of experts weighing in on the issue. I would like to quote from the Ontario Health Technology Advisory Committee, which stated:

The initial reports on intravascular interventions to remove blockages in cranial veins in MS patients are encouraging. There are however, several key areas for investigation.

As well, the MS societies in Canada and the U.S. have called the early findings surrounding CCSVI exciting and intriguing, but have said that more research is needed to firmly establish the link between blocked neck veins and MS symptoms. They have cautioned patients against seeking untested treatments, urging them not to discontinue conventional treatments for their disease.

Is the member suggesting that the government dismiss expert opinions such as those expressed by OHTAC and the MS Society?

Multiple SclerosisGovernment Orders

8:25 p.m.

NDP

Carol Hughes NDP Algoma—Manitoulin—Kapuskasing, ON

Madam Chair, I do not think we need to dismiss the information. We need to consider the benefits to the patients and to allow them to make the proper choice, the choice they want to make with regard to treatment.

A few minutes ago a colleague wanted to know how many people are actually requesting this. Dr. McDonald himself is getting 300 calls a day. People want the choice. They want to be able to make an informed decision. They have been reading everything they can on this issue. They are willing to take the chance to improve the quality of life they currently have.

Multiple SclerosisGovernment Orders

8:25 p.m.

Conservative

Patrick Brown Conservative Barrie, ON

Madam Chair, I appreciate the opportunity to speak in this take note debate on MS.

Let me say first how encouraging it is to have a health minister who is so passionate about MS research and the neurosciences. I will use my time today to highlight how our federal government is leading on neurosciences, and how the debate on MS CCSVI treatment is so desperately needed to occur, not in the House of Commons, but in the provincial legislatures across Canada.

I have had the tremendous benefit to know an incredible lady by the name of Jeanette Elliott, who runs the MS Society of Simcoe County. She is probably the most enthusiastic, passionate and steadfast volunteer one will ever meet. She has taught me a fair bit about MS. I am an eager supporter of my local MS branch because Jeanette's enthusiasm is certainly contagious. One cannot meet her and not want to help out. We are actually planning several fundraising events this summer that include a boat cruise, a volleyball tournament and dragon boat races on Kempenfelt Bay.

We have tremendous support for MS in Barrie because we recognize that MS is a devastating condition. It affects young adults in their prime, causing disability and distress. Jeanette tells me Canada is thought to have one of the highest rates of MS in the world. The total cost for health care and lost productivity associated with MS in Canada is estimated to be a staggering $950 million.

The government recognizes the importance of better understanding of neurological conditions such as MS and how they affect Canadians. Reliable information is the basis for effective programs and policies that will meet the needs of people with MS, their families and caregivers.

One year ago Jeanette Elliott began a petition at Barrie City Hall calling for federal investment to support a national study in neurological disorders. A mere six months later, in June 2009, Jeanette joined me at the MaRS centre to watch our health minister announce an investment of $15 million over four years to support a national study on neurological diseases. This study will fill gaps in information on the extent of neurological diseases and their impact on Canadians and is being co-led by the Public Health Agency of Canada and the Neurological Health Charities of Canada.

The Neurological Health Charities of Canada is a collective of 18 charities, including the MS Society, coming together to improve the quality of life for all persons with chronic brain disorders and their caregivers. In the planning of this national study, the Public Health Agency of Canada and the Neurological Health Charities have worked closely with the neurological community to identify the community's needs and priority areas for study. This included a wide-reaching public consultation with more than 3,000 people affected by neurological disorders.

Through this national population study on neurological conditions, we will learn more about Canadians living with neurological disorders such as MS, and how neurological conditions affect Canadians. The outcomes of this study will be of great value in guiding policy and program planning around neurological disorders.

As has been mentioned by others this evening, this government has been a big supporter of neurological sciences. In 2008-09, $120 million was invested for neurological disorders and $5.3 million was invested for MS. As the minister mentioned, the CIHR is eager to see applications on this CCSVI treatment.

Speaking specifically about MS, I am fascinated by the possibilities with the CCSVI treatment. I come from the beautiful city of Barrie, which is home to one of Canada's leading doctors, and a good friend of mine, Dr. Sandy McDonald, who I suggested speak before the neurological disorders subcommittee. Sandy is a brilliant cardiovascular surgeon and is known locally as the local saint. He was using his own funds, with no legal protection and tremendous exposure to help patients with MS. Let me tell the House about two of his patients, two individuals from my home area of Simcoe country.

Lianne Webb, a 48-year-old woman from Hillsdale, started suffering severe migraine headaches in her mid-twenties. She began to lose control of her right arm and leg. She struggled daily with chronic bouts of fatigue. Ms. Webb was diagnosed with MS in 1992. After 18 long years of living with this disease that had so profoundly affected her and her family, she went to see Dr. McDonald.

Through imaging, Dr. McDonald saw the blockages in Lianne's jugular and diagnosed her as having CCSVI. He treated her with a balloon angioplasty on February 11 of this year. Lianne described the procedure as simple, painless and only lasting a few hours, including recovery time. She said that she no longer has symptoms, her fatigue is gone and she has stopped taking the medication. She is working full time. She golfs and walks the course. She rides horseback at least twice a week. She finds it hard to sit down and relax because she cannot wait to try so many new things. Lianne has her life back.

Steven Garvie, a 53-year-old man, was diagnosed with secondary progressive MS about 10 years ago. Steve was unable to walk without the use of an aid, a rollator or an electric wheelchair. He was living in supportive housing for the physically disabled and was attended to by caregivers every day. They helped him shower, cooked his supper and fed him. They did his dishes and washed him up after he was done.

The agony of Steve's daily life was almost too much to bear. He was constantly haunted by the thoughts of what this disease was putting his three daughters through. He took antidepressants, and admitted to our committee that he tried to commit suicide. Steve had almost given up. That is until he saw Dr. McDonald. Steve has CCVI, and on January 29 of this year he was treated with a balloon angioplasty. Steve testified that the feeling in his left hand came back while he was on the table following a 45-minute procedure. He lifted his leg moments later.

Steve says that he went into the procedure with the hope of just stopping the progression. He was not prepared for the results. Steve was proud to tell us that he has no need for caregivers anymore. He left his housing unit three months ago. He washes for himself, cooks his own dinner and cleans up after. Steve has his life back.

I realize that there is some disagreement in Canada about the safety of the CCSVI treatment between neurological doctors and vascular doctors, but if we have learned one thing from Dr. Sandy McDonald, it is that this treatment provides hope and should be looked at by provincial health ministers across Canada.

Canadians want their provincial health ministers to look into this. Dr. Sandy McDonald says that his office continues to receive 1,000 requests a week for this service. He is at a loss to understand why the provincial governments will not allow this inexpensive and simple procedure.

The provincial ministry of health shut down the ability of the Royal Victoria Hospital in Barrie to provide this treatment. It is not the federal government that has the power to stop treatment. It is not the federal government that authorizes treatment. It is indeed the respective provincial governments.

The member for Oshawa referenced the Ontario government's health technology advisory committee report of May 2010, a month ago, the government of Mr. McGuinty, in which the committee said that this was experimental, that it was not ready.

What I cannot imagine is why some members would try to mislead patients about the source. I apologize if I am restating the obvious but I am a bit perplexed and disappointed to see people send n petitions to the health minister of Canada to allow MS CCSVI treatment when it is the respective provincial governments that provide the technology advisory committee and governs the College of Physicians and Surgeons.

The research arm of health care is funded by the federal government but the administrative decisions and treatment are done by provincial governments. Our health minister is doing her job with passion and vigour. She is supporting research. She has taken a leadership role on neurological disorders, both domestically and internationally, whether it is the investments that have been put into CIHR, the conference she is preparing for this summer of top researchers and academics, or whether it is her leadership on the international scene. Our health minister has been a leader on this front.

It is high time we had a debate like this in provincial legislatures across Canada.

I would like to read a letter into the record from Pat Farrell, one of my constituents from Barrie. It was written to Premier McGuinty. Is that not a surprise, he has addressed it to the province?

I am writing you out of desperation from my family to help my ailing wife Barbara.

She requires an emergency vascular angioplasty that has been denied for unknown reasons.

My wife, Barbara is currently in RVH suffering from MS. She has been denied this procedure...that has the potential to alleviate some or possibly all of her symptoms.

This was a treatment that she was scheduled to have performed. Several people have had this procedure performed and have improved, all at RVH. We got excited and had hope.

Unexpectedly, days before the treatment, it was cancelled....

Some in the media falsely portrayed this as a complete cure.

He realizes that this is not a complete cure but he says that it would help relieve his wife's symptoms. They are both aware there are some risks but they accept the risks. They just cannot understand why the provincial government would tell the hospital in Barrie that it is not permitted. They cannot understand why the provincial health technology advisory committee would say that it is too experimental. It is not the Canadian health technology advisory committee. It is a provincial committee.

It breaks my heart to know that this treatment is not available for Mr. Farrell's wife but he recognizes that we need provincial leadership on this file to match the federal leadership we are seeing in research.

I hope tonight's debate on MS has been informative for those on the roles of each level of government and the urgent need we have for provincial governments to actively engage this health challenge with the same zeal that we are doing so federally.

I know some members across the aisle actually have a relationship with the Premier of Ontario and the health minister who comes from, if I recall, the same region as some members. Maybe they can have a conversation and encourage them to have the technology advisory committee review this.

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8:35 p.m.

Liberal

Siobhan Coady Liberal St. John's South—Mount Pearl, NL

Madam Chair, I am glad the member recognizes the dire need for this treatment. I am, however, quite surprised to hear the member opposite talk so strongly and passionately about the need for this important diagnostic treatment and yet not give any leadership to this role.

He says that it is a provincial issue and that there is nothing for the federal government to do. I disagree strongly with the member opposite when he says that there is no leadership role for the federal government in this area.

We can talk about H1N1 on which the federal government showed leadership in driving this across the country. We would clap for the government if it would show the same perspective toward this very important treatment for multiple sclerosis. Not only that, I am surprised the member is not standing up and calling on the government to do just that.

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8:40 p.m.

Conservative

Patrick Brown Conservative Barrie, ON

Madam Chair, I am glad the member, who hails from the province of Newfoundland and Labrador, is suggesting that the province forget about its role in the administration of health care but I am not sure Premier Williams would appreciate that.

However, it is very clear that there are technology advisory committees at the provincial level. If the federal Minister of Health were to send an order to the provinces telling them to deliver this treatment tomorrow, they would not have to listen. The federal government has no power to order treatment. Treatment in the administration of health care is done at the provincial level.

What I cannot understand is why the members opposite do not use their influence in their home provinces to bring this forward. We are having a debate in the House of Commons tonight. Why does she not encourage a debate at Queen's Park? How can she stand by and allow Mr. McGuinty's technology advisory committee to allow this? It is shutting down the treatment at RVH and it should not be permitted.

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8:40 p.m.

NDP

Carol Hughes NDP Algoma—Manitoulin—Kapuskasing, ON

Madam Chair, we talk about research and the needs of the patients but we are here not only to push the envelope on what needs to happen for people with MS, but, more important, for people with CCSVI. Whether they have MS or not, they should have access to diagnosis and treatment.

We know how important research is, and we do not disagree that it needs to get done, but we are here to ask that it be done in conjunction with treatment and that there be no discrimination as to who gets it.

Does he not agree that the $1.6 billion that were invested in the G8 and G20, especially the $1.9 million with respect to the fake lake and the props to go with it, would have been better invested in more research for MS in order to ensure we have a study that includes treatment and study for everybody?