Social Affairs, Science and Technology National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI) Bill – Motion to Authorize Committee to Hear Witnesses – Debate Adjourned

Speeches

Motion to Authorize Committee to Hear CCSVI Witnesses November 1st, 2012

Hon. Jane Cordy, pursuant to notice of October 31, 2012, moved:

That the Standing Senate Committee on Social Affairs, Science and Technology which is studying Bill S-204, An Act to establish a national strategy for chronic cerebrospinal venous insufficiency (CCSVI), invite Canadian MS/CCSVI patients who have undergone the venous angioplasty for CCSVI treatment to appear before this committee as witnesses, as their experiences and expertise will provide this committee with a better understanding of the realities faced by those directly affected by this legislation.

She said: Honourable senators, it is common practice in the Senate to invite experts, analysts and stakeholders to present their perspectives when considering any legislation or studies at our Senate committees. When the Standing Senate Committee on Social Affairs, Science and Technology — of which I am a member — studied poverty, we met with people living in poverty in Halifax, Toronto and Vancouver. In our study on mental health, mental illness and addictions, some of our best testimony came from those living with poor mental health.

Who on the committee can forget the excellent testimony from the young man from New Brunswick who had autism when we did our autism study, Pay Now or Pay Later? In fact, it was his testimony that gave us the title of our report. Recently, the Legal Affairs Committee heard from a number of victims of crime when they were reviewing the crime legislation.

Honourable senators, I believe it is essential that we hear from witnesses who are directly impacted by a bill as it allows us as parliamentarians to give legislation its proper consideration to make informed decisions.

Why am I waiting until November 1 to raise this issue in the Senate when the committee hearings are already in progress? Honourable senators, I do want you to know that I tried.

On Monday, September 10, 2012, I emailed the members of the Social Affairs steering committee, Senators Ogilvie, Eggleton and Seidman, requesting that those MS patients who have had the venous angioplasty procedure for CCSVI be witnesses at the committee. I made the same request by email on Thursday, September 20.

Senator Eggleton, the Senate opposition representative on the steering committee, replied that he supported the request. Senator Ogilvie said that he would discuss it with me, which did not happen, and Senator Seidman did not reply to either of my emails.

On October 4, at a committee meeting, I again raised the issue of having witnesses appear who had had the procedure done. I was interrupted by the chair, who said we would discuss it at a committee and he adjourned the public meeting.

On October 18, I brought forward a motion to have MS/CCSVI patients who have had the procedure appear as witnesses. This discussion was held in camera and, while I cannot repeat what took place at the meeting, we know that no MS patients who have had the procedure have been called as witnesses.

I brought forward the motion. Senator Eggleton, as the Liberal representative on the steering committee, replied to my earlier emails that he supported my request. I will leave it to honourable senators to figure out who voted against the motion at the in camera meeting that would have allowed MS patients who have had the procedure to appear as witnesses on Bill S-204.

Honourable senators, I have received many emails and phone calls from MS patients who are very interested in Bill S-204. They would like to know that their voices are being heard by committee members. They would like the committee to hear from MS patients; witnesses who truly understand what it is like to have multiple sclerosis; witnesses who have had the procedure done; and witnesses who have had the treatment done outside of Canada and who have been refused follow-up care upon their return to Canada.

When asked at a committee hearing by Senator Munson whether it would help our deliberations and give us a better insight if we had patients as witnesses, Mr. Juurlink, from the National CCSVI Society, stated:

They are the individuals who are often refused treatment when they come back to Canada. I think it would be good to hear a few first-hand stories.

Dr. Barry Rubin, a member of the CIHR expert panel, stated:

Therefore, I think, as this is a transparent process, that you should absolutely hear from patients that have MS, patients who have benefitted from the procedure and patients who had the procedure and had no benefit or indeed had complications. I think that would give you the opportunity to understand the full spectrum of what is going on and will help in making an informed decision.

When asked later by Senator Merchant whether it was important for patients to appear before the committee in person or would it be just as good for them to submit a written submission, Mr. Juurlink stated: I think human-to-human contact has greater impact than paper-to-human contact.

Dr. Rubin stated:

I think there is nothing like looking someone in the eye when you are talking to them.

Honourable senators, the hundreds of MS/CCSVI patients whom I have been in touch with are following Bill S-204 closely. Some have requested to appear as witnesses. Many have sent committee members written submissions.

If an honourable senator feels strongly that MS patients should not be witnesses before the committee, then they should give their reasons publicly. We all have the right to disagree but, honourable senators, give these MS patients the dignity of an open, transparent and honest discussion.

I agree with Mr. Juurlink and Dr. Rubin that MS/CCSVI patients who have undergone the venous angioplasty treatment for CCSVI should be invited to appear as witnesses because their experience and expertise will provide the members of the Social Affairs Committee with a better understanding of the realities faced by those directly affected by this legislation.

I would ask that the Social Affairs Committee consider this motion in a public meeting.