House of Commons Hansard #63 of the 41st Parliament, 1st Session. (The original version is on Parliament's site.) The word of the day was elected.

Topics

Newfoundland and Labrador Fishery Rebuilding Act
Private Members' Business

6:30 p.m.

Some hon. members

Nay.

Newfoundland and Labrador Fishery Rebuilding Act
Private Members' Business

6:30 p.m.

Conservative

The Acting Speaker Barry Devolin

In my opinion the yeas have it.

And five or more members having risen:

Pursuant to Standing Order 93, the division stands deferred until Wednesday, December 14, 2011, immediately before the time provided for private members' business.

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

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

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

6:45 p.m.

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

6:45 p.m.

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

6:45 p.m.

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

6:50 p.m.

Conservative

The Acting Speaker Barry Devolin

I would just remind all hon. members to direct their questions and comments through the Chair.

The hon. member for Etobicoke North.

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

6:50 p.m.

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

6:50 p.m.

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

6:55 p.m.

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

7:05 p.m.

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.

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

7:15 p.m.

Simcoe—Grey
Ontario

Conservative

Kellie Leitch Parliamentary Secretary to the Minister of Human Resources and Skills Development and to the Minister of Labour

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

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

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

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

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

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

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

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

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

The MS Society goes on to say that:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

7:20 p.m.

NDP

Djaouida Sellah Saint-Bruno—Saint-Hubert, QC

Mr. Speaker, I would like to thank my colleague, the member for Etobicoke North, for the energy and passion she has put into the cause of multiple sclerosis.

Canada is one of the countries most affected by this illness. It is believed that between 50,000 and 80,000 Canadians are affected, and three new cases are diagnosed every day in Canada. What is dramatic is that the people who are diagnosed with multiple sclerosis are in their prime. They are usually between 15 and 40. So these are young people who are active in the labour force and have a family, or people who are dreaming of changing the world and making a contribution to our society.

Learning that your body is an obstacle to achieving your goals is a hard reality to face and difficult to accept. The symptoms of multiple sclerosis vary from person to person. They range from blurred vision and extreme fatigue to trouble speaking and muscle stiffness. The most severe cases can involve memory problems and partial or full paralysis. With this illness, you need help from your loved ones, at least some of the time. So I hope that this government will do more for informal caregivers, who often must take time off work and bear the costs of caring for their loved ones.

The reality is no rosier for patients. Almost 80% of multiple sclerosis patients end up unable to do full-time work. So it is urgent to give those people the flexibility they need so that they remain active and stay out of poverty. This is even more important when we realize that 75% of patients are women. I remind the House that more women than men live on a low income. One of the objectives of the Multiple Sclerosis Society of Canada is to improve the system of employment insurance sickness benefits so that compensation can be paid when work is missed because of flare-ups. I hope the government is listening.

At the moment, multiple sclerosis is incurable. A number of treatments can slow the progress of the disease and reduce the frequency of the attacks or the intensity of the symptoms. But nothing yet lets patients tell their loved ones that they are cured. So we should not be shocked to learn that a 2009 announcement of a potential cure gave Canadians a lot of hope. But they are frustrated at not having access to it here. The treatment in question was developed by Dr. Paolo Zamboni. He feels that an obstruction in certain parts of the system of veins in the neck and the head makes that system unable to drain the blood effectively from the brain and the spinal cord. This could be the cause of the iron deposits in the central nervous system which provoke an immune response associated with multiple sclerosis.

The proposed treatment, the possible therapy, consists of an angioplasty, in which veins are opened and a small balloon or a vascular stent is inserted. The first trials that Dr. Zamboni conducted were very promising. But the scientific community is still very cautious. In fact, the cause of the disease that Dr. Zamboni suggests was not considered by experts until now. After the shock that the initial discovery caused, a number of studies have been undertaken on various aspects of the theory; the results are inconclusive to say the least. Some support Dr. Zamboni's conclusions, others reject them.

As a physician, I have to admit that I am both intrigued with and skeptical of the theory that Dr. Zamboni is putting forward. I am intrigued because he seems to have achieved results and because, if his research turns out to be valid, it will be a major advance in medical research. But I am skeptical not only because the research is not complete but also because it is not the first time that a miracle cure for multiple sclerosis has been announced. I have in mind the 1988 announcement by a French doctor, Dr. Le Gac, that the disease could be cured with high doses of antibiotics because it was caused by a virus.

It is my wish that the treatment will be available as soon as possible for all those who need it and that it will be proven effective. Patients are putting a lot of hope into the procedure.

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

7:25 p.m.

Conservative

The Acting Speaker Barry Devolin

Order, please. I am sorry, but the time provided for the consideration of private members' business has now expired and the order is dropped to the bottom of the order of precedence on the Order Paper.

It being 7:30 p.m. the House stands adjourned until tomorrow at 10 a.m. pursuant to Standing Order 24(1).

(The House adjourned at 7:30 p.m.)