National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI) Bill Fifteenth Report of Social Affairs, Science and Technology Committee – Debate Continued

Speeches

Bill S-204, An Act to establish a national strategy for chronic cerebrospinal venous insufficiency (CCSVI) Senator Jane Cordy May 2nd, 2013

On the Order:

Resuming debate on the motion of the Honourable Senator Ogilvie, seconded by the Honourable Senator Wallace, for the adoption of the fifteenth report of the Standing Senate Committee on Social Affairs, Science and Technology (Bill S-204, An Act to establish a national strategy for chronic cerebrospinal venous insufficiency (CCSVI), with a recommendation), presented in the Senate on November 22, 2012.

Hon. Jane Cordy: Honourable senators, I would like to thank Senator Tardif and His Honour the Speaker for asking that the clock start again. Yesterday my daughter had our second grandson.

Some Hon. Senators: Hear, hear!

Senator Cordy: There were more important things for me than speaking in the Senate. I thank all of you for allowing me to speak today.

I would like to begin my speech today by thanking Dr. Kirsty Duncan, the Liberal M.P. for Etobicoke North, who works tirelessly to help those with MS. She has held numerous meetings on the Hill for senators and MPs who wish to learn more about MS and CCSVI, and has been instrumental in formulating Bill S- 204.

My Liberal colleagues have been amazing in their support of Canadians with MS, CCSVI. Many of you attended information sessions, asked questions of me and gave me so much support; I thank you all from the bottom of my heart. I am proud to be part of this team.

I would also like to thank the many Canadians with MS who answered my numerous questions, especially Christopher Alkenbrack from Nova Scotia and Linda Hume-Sastre, President of Ontario CCSVI. They both work continuously to help others.

I am speaking today on Bill S-204, An Act to establish a national strategy for chronic cerebrospinal venous insufficiency, or CCSVI. This bill, in addition to establishing a national strategy for MS, also calls for a national registry to collect information from MS/CCSVI patients who have had the venous angioplasty procedure done outside the country. The bill also calls for follow- up care for those who have had the procedure done outside the country and, of course, it calls on the government to have clinical trials in Canada for those with MS/CCSVI.

Unfortunately, honourable senators, this bill was killed at the Social Affairs Committee. The Conservatives on the committee voted that the bill not proceed to clause-by-clause consideration, that the committee recommend that the Senate not proceed further with the bill, and that the committee adopt the report which is before the Senate. This was moved by Senator Martin at the beginning of our public meeting, which was preceded by an in camera meeting. Honourable senators can guess what the topic was at the in camera meeting.

By the way, when asked the day before by Senator Munson if clause-by-clause consideration would be in public, the chair said that it would be an agenda item in public and that he had given this assurance to Senator Eggleton, the Liberal deputy chair. I guess it was a play with words because the "item" of clause-by- clause was on the agenda, it was just voted by Conservative senators that clause-by-clause would not take place. Certainly, the spirit of the chair's comments that clause-by-clause would be public was not followed through.

Many Canadians with MS were watching, and listening, and waiting for clause-by-clause consideration of the bill. Of course, that did not happen.

The report, which was passed by the committee by the votes of the Conservative majority, does not reflect what we heard from the witnesses.

I was very disappointed with the process at committee regarding Bill S-204. We heard some excellent witnesses. Unfortunately, we did not hear from any MS patients, many of whom made written requests to appear before the committee. I brought forward a motion to this chamber that MS/CCSVI patients who have undergone venous angioplasty appear as witnesses before the committee. Unfortunately, every Conservative senator in this chamber voted against that motion. Why would we not want to hear testimony from those most affected?

As Senator Merchant told us in this chamber, the premier and the health minister of Saskatchewan contacted MS/CCSVI patients in their province and requested a meeting with a number of them. Yet here, in the Senate, in the chamber of sober second thought, Conservative senators voted unanimously to not hear those voices. I cannot understand why the Conservative senators would not want to hear "real people, real faces, real stories," to quote Senator Munson. Why did the Conservative senators not have the courage to hear their stories?

Michelle, who has MS, wrote to all senators stating:

I am a Multiple Sclerosis patient from Saskatchewan and am absolutely disgusted and appalled by your latest decision not to hear from actual patients about our experiences with our CCSVI procedures we have had abroad.

Denise wrote to senators on the committee:

I am appalled, but sadly, not at all surprised that the Conservatives are blocking the people with the most at stake and with the most intimate knowledge concerning CCSVI treatment from being permitted to speak as witnesses.

Paragraph 3 of the Conservative report states:

... in the early stages, some patients were refused medical treatment after having experienced complications resulting from venoplasty performed in other countries. However, it should be noted that provincial health authorities and the colleges of medicine took quick action to ensure that no Canadians would be denied medical treatment.

Honourable senators, the committee simply did not hear any evidence that MS patients are no longer being refused medical treatment, but we certainly did hear evidence that some MS patients who have had angioplasty outside the country are not receiving follow-up care. We heard it from witnesses and from written submissions from Canadians with MS who were not allowed to be witnesses because all the Conservatives voted against it.

Dr. Rubin, who was a witness, said it was unacceptable that patients are not receiving follow-up care. Dr. Zivadinov said it was unacceptable. Dr. Laupacis said it was unacceptable. Dr. Juurlink said it was a human rights issue. They were all witnesses before our committee.

We all heard from Senator Jaffer the story of Roxane Garland, who had the procedure done outside of Canada and who was refused medical care and died from complications last summer. All members of the committee received written submissions from patients who were refused medical care on their return to Canada.

This week all members of the committee received an email about a teenaged girl who had the procedure outside the country and was refused care here in Canada. Dr. Kirsty Duncan and I are in touch with over 2,000 Canadians with MS/CCSVI.

Then, we have a committee report saying that this might have happened in the early stages but it no longer happens? That is completely false. Why should Canadians with MS be denied follow-up care? This is Canada.

Bill S-204 calls for a national registry. Dr. Zivadinov stated, "absolutely, you need a registry." Dr. Laupacis said that a registry would provide useful information particularly about long-term side effects. Paragraph 7 of the Conservative senators' report states:

...that a national registry, such as proposed by Bill S-204, would be costly and provide little benefit in the understanding of CCSVI and patient outcomes resulting from vinoplasty.

I find this particularly unusual since on March 23, 2011, the Minister of Health announced a new monitoring system for MS. This system will capture information to identify disease patterns and track treatments and long-term outcomes for people living with MS, including those who have undergone treatment for CCSVI.

The witnesses clearly thought a registry would be valuable, as did the minister in March of 2011. However, the Conservative senators on the committee clearly disagreed with the witnesses and the minister. Of course, as with many other announcements made by the Minister of Health, the monitoring system for MS has been delayed, and despite the correspondence with the minister's office by Dr. Kirsty Duncan and by me, I am still unable to tell honourable senators if the monitoring system is in place.

Honourable senators, the bill calls for clinical trials. We have had three announcements by the minister about clinical trials. The first was June 29, 2011, almost two years ago, three days after Bill S-204 was tabled. A coincidence, I am sure.

The second announcement was made on April 18, during break week, and just before the critic, Senator Unger, spoke on the bill the following week. No doubt another coincidence. The third announcement was in 2012, less than a week before Bill S-204 went to the committee, no doubt another coincidence.

In this last announcement last fall, Minister Aglukkaq said that there would be national MS trials. Dr. Traboulsee, who heads the trials, said that they would be pan-Canadian. We now know that the trials will take place in British Columbia, Manitoba and Quebec. That is great if you live in British Columbia, Manitoba or Quebec.

We also know that if you are not from these three provinces, you cannot take part in the so-called national or pan-Canadian trials. Those living in Atlantic Canada are not eligible. I am from Nova Scotia. No MS patient from Nova Scotia is eligible for clinical trials. Those living in Ontario are not eligible. Those in Alberta are not eligible. In the Northwest Territories, they are not eligible. Those in Nunavut are not eligible. They are not eligible to participate in the so-called pan-Canadian trials. Unless you live in Quebec, British Columbia or Manitoba, you are out of luck.

Unfortunately, honourable senators, the Conservative senators on this committee have played politics with MS patients. The science was thrown away. They voted to refuse MS patients the opportunity to testify before the committee. They killed the bill before even allowing it to go to clause-by-clause consideration. They misled Canadians by stating in the report that no MS patient is refused follow-up care, despite evidence to the contrary.

Honourable senators, an access to information request on MS contained a report on a Conservative caucus meeting held on Tuesday, February 7, 2012. At that meeting, the Minister of Health, the parliamentary secretary and CIHR President Dr. Alain Beaudet — by the way, CIHR is an arm's-length agency — were present to discuss Bill S-204.

There were excellent questions and comments made by Senator Lang, Senator Stewart Olsen, Senator Tkachuk and Senator Finley. Many Conservative senators and MPs approached Dr. Kirsty Duncan and me and told us to keep fighting and that we were doing the right thing. While we appreciated the comments, it is a shame that all senators did not have the opportunity to vote on the bill, to make amendments if they wished to or to speak to the bill at third reading. Perhaps, if a Conservative senator brings forward a private member's bill to help MS patients, it will not be stopped before clause by clause.

We learned that at the Conservative caucus meeting in February of 2012, CIHR, the arm's-length agency of the government, would take the lead in drafting a five-pager for the minister. We also know that one page was dealing with why the government cannot support either Bill S-204, which was my bill, or Bill C-280, Dr. Kirsty Duncan's bill on MS-CCSVI, which was tabled in the House of Commons.

This information leads me to ask the following: When was the decision made to not support the bill? When was the decision made to kill the bill by not allowing clause-by-clause consideration? When was the decision made to not allow MS patients to appear as witnesses? Who drafted the committee report that ignored testimony? Who made the decision to kill the bill? Who made the decision to not allow MS patients to appear as witnesses? Who decided to pretend to Canadians with MS that there was a possibility that Bill S-204 would be voted on in the Senate?

Honourable senators, 75,000 Canadians have MS, and 1,000 new cases are diagnosed each year.

I met many of these Canadians at the national CCSVI conference in Alberta last fall. I have met many in Ottawa, in Nova Scotia and around the country. They are very courageous people, fighting for rights not just for themselves but also for others. I have heard stories that make one jump for joy, like that of the woman I spoke to in Halifax, who lived in a nursing home. After venous angioplasty, she now lives independently in her own apartment. Not only that, this woman now volunteers at the same nursing home where she had lived. A man from Ontario went into the hospital in a wheelchair and walked out of the hospital on his own after angioplasty. I have heard stories that make one want to cry, like that of Roxanne Garland, who died after being refused follow-up care in Canada, or like those of the MS patients who have mortgaged their homes or borrowed money because they have to travel outside of the country for medical help.

In September of this year, the national MS-CCSVI meetings will take place in Quebec. I invite every senator in the chamber, whether you believe in the clinical trials and in my bill or not, to spend a day, or even a few hours, with some of the most amazing, courageous people you will ever meet.

Ask your questions of the presenters. Talk to the MS patients who were not allowed to appear as witnesses. Hear their stories, the stories that they were not able to tell in the Senate of Canada.

Honourable senators, surely it is not too much to ask that we, in Canada, have a national strategy for MS, that we have a national registry so that we can learn from others or that we have clinical trials that are truly pan-Canadian. We should certainly have follow-up care for MS patients who have had the procedure outside of the country.

Is it too much to ask that a bill asking for this not be killed at committee before clause-by-clause consideration could take place? Is it too much to ask that all senators be allowed to vote on whether or not we support a bill?

On behalf of the 75,000 MS patients here in Canada, honourable senators, let us try to do better.