Hon. Pana Merchant:

Honourable senators, I wish to thank and commend my colleague, Senator Cordy, for her exemplary commitment to giving voice to the plight of Canadians living with multiple sclerosis and chronic cerebrospinal venous insufficiency, for which an angioplasty procedure was pioneered by Dr. Paolo Zamboni, a medical researcher at the University of Ferrara in Italy.

Canadians, the 75,000 with multiple sclerosis and those without personal involvement who observed the Zamboni procedure debate, expect from government care and safety. We also expect that progress will not be delayed by an overcautious stodginess or, worse still, that better health care for the cruelly afflicted will not be delayed by discussions to save money, not lives.

MS sufferers and many Canadians are justified in their suspicion that the government's agenda is about dollars, not sound science, when it refuses to allow first-hand witnesses of the liberation procedure to testify orally in front of the Standing Senate Committee on Social Affairs, Science and Technology.

Over time, both houses of Parliament have welcomed witnesses who offered direct first-hand knowledge of the matter being considered. Science took a suspicious and political step in refusing to hear witnesses' first-hand accounts — witnesses like Michelle Walsh, a 39-year-old woman from Beechy, Saskatchewan, and mother of two young children, one and three years of age, who was diagnosed with MS at the age of 18 years. Ms. Walsh sought venous angioplasty treatment for her CCSVI abroad in Bulgaria in July 2010, twice in the United States in January 2011 and again in March 2012.

She said that all three times she had symptom relief that greatly improved the quality of her life immensely, which no MS drug had ever done for her in 21 years. Most importantly, the MRIs of her brain have shown scientific evidence that since her first procedure for CCSVI, she has had no lesion activity in her secondary progressive MS. The MRI also showed that some of her brain lesions are getting much smaller and some have gone away. She has not needed to take any medications for over two years.

Honourable senators, it is significant that in Saskatchewan, in an apolitical decision earlier this year to approve funding for Phase II and III clinical trials, Premier Brad Wall and Saskatchewan's Minister of Health, the Honourable Don McMorris, met with at least 15 MS patients in person to hear from and learn about their experiences with their CCSVI procedures abroad.

The Saskatchewan government felt that in this way they could make an informed decision about the involvement in trials of the liberation treatment. Yet, the federal government in Ottawa refused to allow any such input in their decision-making process.

In this chamber on Tuesday, November 6, 2012, 52 Conservative senators voted to block from testifying those who were treated, and they refused to support the position of Senator Cordy that sufferers of multiple sclerosis have the right to appear before the Standing Senate Committee on Social Affairs, Science and Technology. It was politics over people.

Multiple sclerosis is a devastating neurological disease that impairs the communication ability of the nerve cells in the brain and in the spinal cord. Such impairment often leads to the destruction of these cells. The cause or causes are not known. The end state of the illness is paralysis.

Each year, there are 1,000 new Canadian MS cases, and each year, 400 Canadians die from this disease. There are more than 75,000 MS sufferers in Canada. It is a medical challenge of huge proportions, one on which the Canadian Department of Health continues to take a back seat.

My home province of Saskatchewan has one of the highest rates of multiple sclerosis in the world, with 340 cases per 100,000 of population. An estimated 3,500 people in Saskatchewan have been diagnosed with MS.

Chronic cerebrospinal venous insufficiency, CCSVI, is a vascular condition that arises often in multiple sclerosis patients. According to the MS Society, it describes a theory in which portions of the venous system in the head and the neck are narrowed or blocked and therefore unable to efficiently remove blood from the brain and spinal cord. The current CCSVI diagnosis is based on Doppler sonography. Prevalence estimates of CCSVI provided by different groups using various imaging methods of assessment vary widely, from none to 100 per cent. There is an urgent need to define and validate the spectrum of cranial and extra-cranial venous anomalies and to establish reliable diagnostic standard tests.

This year a controversial treatment for the illness by way of clinical trials has begun in Albany, New York, and it will be available to a small number of Saskatchewan MS sufferers in spite of the reservations of Canadian health authorities. The medical focus in these clinical trials is the condition of vein abnormalities in the form of blockages, which are more common in MS patients than in those who do not have MS. The liberation procedure involves angioplasty to open blocked veins in the neck and stem.

Canadian participants in the New York clinical trials are from Saskatchewan since the government of my province is the only government authority in Canada to provide funds to the extent of $2.2 million to cover all of the clinical trial expenses for Saskatchewan participants. In total, 682 individuals applied before the deadline of Friday, February 24, 2012, for a space in the New York program. Currently, 86 Saskatchewan residents have been randomly chosen to participate.

One can be critical of the Government of Saskatchewan for not engaging in its own clinical trials. It attempted that. However, to be fair, we must wonder why the provincial government did not get any help from the Government of Canada when it originally planned to go that route.

There are two outstanding issues: Why is the Province of Saskatchewan alone in its aggressive approach to fighting MS, and why is the federal government a mere passive observer in this process?

This medical procedure needs no longer to be termed "controversial," although the treatment in these clinical trials is relatively new. It is called liberation therapy, which is in fact a venous angioplasty procedure. There is increasing worldwide interest in the treatment provided in these trials, and while this treatment is occasionally unsuccessful, there is dramatic and growing evidence worldwide of medical benefits to sufferers of MS.

Specialists at the Albany medical facility where Saskatchewan MS patients are participating in their clinical trials have already confirmed more than a 25 per cent increase in quality-of-life scores. As our colleague Senator Cordy related to this chamber on June 5, 2012, the suicide rate for MS patients is a staggering seven times higher than the national average. This is a shocking statistic and indicative of the hopelessness many MS sufferers feel about finding relief from their symptoms.

To date, this procedure is being undertaken in 60 countries, and 30,000 procedures have been performed worldwide. There are now over 200 people with MS who have had the CCSVI procedure in Australia, and there are many more treated every day in the United States, Poland, Bulgaria, Kuwait, Serbia, Germany, Italy, Scotland, Mexico, Egypt and India. Thousands of people have been treated worldwide. Kuwait, Serbia and Italy have government-funded programs in place to provide for all their citizens with MS.

Honourable senators, today we have no national strategy and no proper follow-up health care for a patient following CCSVI treatment. There have been issues with having the proper follow-up care and there have been reported incidents of doctors reluctant or refusing to provide follow-up care for patients who have sought the liberation treatment abroad, of doctors fearing that they may lose their licence for doing so and of doctors fearing that they may not be able to bill for providing follow-up care.

Canadians with CCSVI should have access to our medical system. One of the five principles of the Canada Health Act is accessibility.

Honourable senators, I will conclude with comments we have received from patients who themselves were not allowed to appear before our committee. One patient wrote:

We as MS/CCSVI patients have not only been orphaned in our entire Canadian medical system but we have been treated like second-class citizens which in my opinion is unethical and immoral.

Another patient said:

I am being buried alive. Don't forget me. I'm still in here, trapped in a body that can't move, that can't talk. But I think and feel like you do, and I hurt. I hurt physically and mentally.

Finally I want to repeat for honourable senators the words in the obituary notice of Roxane Garland from Saskatchewan:

Rocky would want people to keep on trying to get CCSVI treatment available in Canada and more importantly, the follow-up care that she so desperately needed but could not attain.

Hon. Jane Cordy: Would the honourable senator accept a question?

Senator Merchant: Yes.

Senator Cordy: That was an exceptional speech. I thank the honourable senator very much for the care she has shown to all of the 75,000 Canadians who have MS. Their families certainly appreciate what she has done today to educate people about MS.

I want to congratulate the Province of Saskatchewan. They have moved on their own, without any support from the federal government, for clinical trials in Albany, New York. As Senator Merchant said, there has been a lack of action on the part of the Conservative government in the whole file of multiple sclerosis.

Conservative senators voted unanimously in a standing vote against a motion I moved that MS patients be allowed to appear before the Social Affairs Committee. That was unfortunate, because their voices were not heard, although they did send written submissions, from which the honourable senator quoted.

Even though the federal Conservatives would not allow patients to appear before the committee, did the honourable senator say that Premier Wall and his health minister met with MS patients from Saskatchewan and talked to them about their concerns with MS, whether they were receiving follow-up care and their overall concerns with the way they were being treated with MS?

Senator Merchant: I thank the senator for the question.

Michelle Walsh, the woman from Beechy whom I spoke of who has had MS since she was 18, has had three treatments out of the country. The first one was in Bulgaria. She reported to me that because of the language barrier she found that a little bit difficult. However, she said that as soon as the procedure was over and for about four months following it she noticed a huge difference, including improved sight.

She said the very first treatment was not very aggressive, as they were reluctant to have an aggressive treatment because they knew nothing about it. However, the next two times she went to the United States. After each treatment she found that the length of time she was feeling better was longer.

She is an advocate for MS patients. She is the person who went to see the premier of Saskatchewan. She sat down with him. Along with that, 15 other people were called in by the premier and by the then health minister. They met and they spoke about their experiences and about the positive differences they had noticed. She told me that patients have started to go to New York. They send two at a time. They expect this to be finished by next spring. I am not exactly sure about the actual time.

She continues to communicate with the Government of Saskatchewan. They keep them informed of what is going on.

The Government of Saskatchewan has been exemplary in their approach to the treatment of the patients themselves.

Senator Cordy: Does the honourable senator think it would have been helpful for MS patients to appear before the Standing Senate Committee on Social Affairs, Science and Technology, although they were not allowed to because Conservative senators voted against that? Second, does she think it would be helpful if the federal Minister of Health were to sit down and meet with MS patients to discuss their concerns?

Senator Merchant: My opinion is not an expert one, but honourable senators may recall in our committee that we asked the witnesses, the doctors who appeared before us, whether they felt that we ought to hear from people who had received the treatment. I believe every single one of them said that it would be very helpful and appropriate for us to see the witnesses and not just to hear from them through letters. I believe one of them said there is nothing like looking someone right in the eye and hearing their report.

The letters they write us are very moving, but it is not the same as having the people there. I think that we, out of respect for every Canadian, owe it to people, because we have done this before with committees. We have always allowed individuals to appear before us. This time we were barred from hearing anyone who had been involved in this treatment.

We had people appear before us on the study on poverty and the issue of mental illness. There was a different procedure followed here. I think that the Minister of Health should hear from these people. I hope she will meet with them and hear about their experiences.

Hon. Mobina S. B. Jaffer: Will the honourable senator accept a question? Both Senator Merchant and Senator Cordy are members of the Standing Senate Committee on Social Affairs, Science and Technology and have the experience of this study. For those of us who have not been part of that study, can she explain to us what difference it would have made to the bill the committee was studying to have heard from people suffering from this terrible illness?

Senator Merchant: There are several people on the committee. Certainly, I believe that we ought to have allowed people who have had this treatment come and appear before us. Why would we treat these individuals afflicted with MS any differently from the way we treated people in our previous studies?

I think it would have made a great difference, because we would have seen them, been able to interact with them and seen how they are. I think it would have made a great difference.

Senator Jaffer: In the Legal Committee when we were studying an extensive bill, Bill C-10, we had many victims speak to us. When we heard from them, it made a big difference for us in understanding the challenges the victims faced. I wonder if that was the same kind of testimony the honourable senator was looking for.

Senator Merchant: I think it was, of course. Also, those people who are facing great challenges were prepared to travel to Ottawa. I do not think that would have been simple for them. It is not like one of us getting on a plane and coming here. However, they were anxious. They wanted to come and speak to us. They appealed to us repeatedly. Unfortunately, certain people on the committee decided not to hear from them. The majority ruled.

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