1st Session, 41st Parliament,
Volume 150, Issue 104
Tuesday, October 2, 2012
The Honourable Noël A. Kinsella, Speaker
Multiple Sclerosis and Chronic Cerebrospinal Venous Insufficiency
On the Order:
Resuming debate on the inquiry of the Honourable Senator Cordy, calling the attention of the Senate to those Canadians living with multiple sclerosis (MS) and chronic cerebrospinal venous insufficiency (CCSVI), who lack access to the “liberation” procedure.
Hon. Mobina S. B. Jaffer: Honourable senators, I rise today to speak Senator Cordy’s inquiry regarding access to angioplasty treatment for Canadians living with multiple sclerosis and chronic cerebrospinal venous insufficiency, or CCSVI.
In speaking to this inquiry, I want first to recognize our colleague Senator Cordy and Dr. Kirsty Duncan, M.P., for the incredible work they have done to advance the rights of Canadians with multiple sclerosis. Senator Cordy is especially steadfast in her advocacy, never relenting, never despairing and always remembering the important role that we play as senators to give voice to those in need of our compassion, understanding and support. Her example is an inspiration to us all.
The MS Society of Canada tells us that multiple sclerosis is:
. . . an unpredictable, often disabling disease of the central nervous system which is composed of the brain and spinal cord. The disease attacks the myelin which is a protective covering wrapped around the nerves of the central nervous system. . . . Symptoms of MS are unpredictable and vary greatly from person to person and from time to time in the same person.
These symptoms can include vision problems, loss of balance, loss of coordination, extreme fatigue, speech or memory failure, muscle stiffness and paralysis.
Chronic cerebrospinal venous insufficiency, CCSVI, also attacks the central nervous system. The MS Society states that “CCSVI describes a theory in which portions of the venous system in the head and neck are narrowed or blocked and, therefore, unable to efficiently remove blood from the brain and spinal cord.”
In 2008, Dr. Paolo Zamboni of the University of Ferrara in Italy first published findings on an apparent association between multiple sclerosis and CCSVI. Since then, he has pioneered an angioplasty procedure correcting the abnormality in veins to the brain.
More than 50 countries around the world have implemented clinical trials for the CCSVI angioplasty treatment. Until last Friday, September 28, Canada was not one of them. I commend the Minister of Health on her announcement that the Canadian government will conduct clinical trials in British Columbia, Manitoba and Quebec to determine the safety and efficiency of treatment for CCSVI.
In the piece by Anne Kingston of Macleans, Dr. Michael Shannon, a former deputy surgeon general of Canada, said that CCSVI clinical trials have “the potential of providing very useful information that can be integrated into the bigger CCSVI research picture.” As Dr. Shannon, an expert in setting up clinical trials, went on to say that it is absolutely essential that these clinical trials adopt an unassailable design universally perceived as credible.
I sincerely hope that the federal Minister of Health will answer pressing questions that that CCSVI advocates have asked in the wake of Friday’s announcement. Their questions are: Where were the interventional radiologists who will perform the procedure trained and who trained them? How will the clinical improvement be measured, and by whom will it be measured? Which vascular specialists will participate in this research along with the already-named neurological specialists?
Though CCSVI is a vascular condition, a neurologist who has publicly expressed his opposition to the treatment will lead the clinical trial. In the wake of these and other questions, how will Health Canada and the Canadian Institutes of Health Research proactively ensure both the validity and the credibility of the clinical trials?
Canadian MS patients deserve nothing less than full answers and diligent action.
Honourable senators, there is no denying that, when it comes to MS and CCSVI, we are left with more questions than answers. In science as in life, definitive conclusions are hard to come by. Nevertheless, we must not lose hope that research can help us to learn more about how we can treat and cure this horrible disease.
Indeed, we have made great advancements already. To quote the U.S. National Multiple Sclerosis Society, “in rare cases MS is so malignantly progressive it is terminal,” but thanks to new treatments and therapies for people with MS, most patients “can have a normal or near-normal life expectancy.”
The Multiple Sclerosis Society of Canada does extremely valuable work in educating Canadians about MS. Being diagnosed with a chronic disease is an incredibly scary experience; the more we learn about available treatments the better able we will be to support the family, friends, co-workers and neighbours of people who live with MS and CCSVI.
This support is unbelievably important. When Senator Cordy first commenced this inquiry in March 2011, she said something that struck me to my core: The suicide rate for MS patients is seven times higher than the national average. Honourable senators, I want you to remember that statistic as we deliberate on the bill. I will repeat it: seven times higher than the national average.
From a holistic perspective, the health challenges that patients and their families face are only the tip of the iceberg.
We can learn from the National Aboriginal Health Organization, which tells us that:
From an Aboriginal perspective, holistic health care is an integrative approach that seeks to balance the mind, body, and spirit with community and environment. . . . First Nations Traditional medicine emphasizes the basic spiritual principles of compassion for others and for self.
Debating access in Canada to angioplasty treatment clinical trials and to proper follow-up care for Canadians who have undergone these trials not only demands consideration of medical advances and promises, but it also presents an ethical juncture at which we must recognize the moral imperative to act. Instituting targeted, credible clinical trials and follow-up care to protect citizens is neither an extraordinary nor a costly policy measure. If we are consistent in our devotion to nurturing a healthy society, the choice seems evident.
Honourable senators, when I stand before you calling on Canada to implement truly comprehensive quality universal health care, I do so acknowledging that we have still much to learn from science, but also from one another and from each other’s unique experiences.
Let me share with you one tragedy. Roxane Garland died this past summer, on July 22, after a long battle with MS. She was 37 years old. Garland fought for her life, undergoing angioplasty treatment abroad, which provided her some relief from her symptoms. She paid for the procedure out of her own pocket. When she returned home to Saskatchewan, however, she was unable to access follow-up care procedures and services available to all Canadians.
A CBC news story dated August 1, 2012, stated:
According to Michelle Walsh, a friend to Garland and an advocate for improved MS treatment, [Garland] was unable to get an appointment for a specialized scan — available in Saskatchewan — to evaluate her need for further treatment.
“Anyone could pay to have this test done,” Walsh explained to CBC News. “But not if you have MS and you have CCSVI. So they were being turned away.”
As Garland’s MS progressed, it became more difficult to manage. She contracted a bladder infection, among other complications. She was finally admitted to hospital, where she died.
I continue from the CBC News story:
Her husband Vince Garland told CBC News he believes Saskatchewan doctors are reluctant to provide follow up care for the CCSVI procedure because it is relatively unknown.
“They don’t want to get involved because a doctor somewhere else has done the surgery,” Garland said. “And they don’t want to learn anything about it. They don’t want to know anything about it. This is something new.”
Walsh says Saskatchewan’s health system should support MS patients who need follow up care after CCSVI treatment.
She said it should not matter where they went for treatment or who paid for it.
“If you went on a holiday and broke your leg, you wouldn’t be refused by a doctor . . . So why are MS patients being treated like second class citizens here?”
While Saskatchewan will allow some MS patients to take part in clinical trials in New York, the government is only supporting follow-up treatments for those involved with the clinical trial. The federal government’s recent announcement about clinical trials does not guarantee the follow-up care that Canadians who seek treatment for CCSVI abroad deserve. Clinical trials are a good first step, but they did not facilitate follow-up care for Roxane Garland in Saskatchewan, and they will not facilitate follow-up care for the thousands of Canadian MS patients who have travelled abroad to receive treatment.
Honourable senators, when you sleep tonight, I want you to think about Roxane Garland’s obituary notice. She demonstrates how important it was to her that other Canadian MS patients receive the treatment and follow-up care that they need. Her obituary reads as follows:
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.
Honourable senators, we bring our knowledge and our experience to debate in this place. We also bring our values. We try to walk in someone else’s shoes. If my father, brother, sister — if anyone I held dear — was fighting this terrible disease, I would trust and insist that Canada — free, prosperous, compassionate Canada — would facilitate access to whatever procedures might help them win that fight. I believe in love and compassion and human dignity, not only for my father, my husband, my sister, my loved ones, but for everyone.
His Holiness the fourteenth Dalai Lama of Tibet tells us that “many illnesses can be cured by the one medicine of love and compassion.” The head of state and spiritual leader of Tibet, His Holiness describes himself as a simple Buddhist monk. The Holy Bible’s Gospel of John, chapter 13:34, quotes Jesus Christ, who said, simply, “love one another.” In remarks at Évora University in Portugal on February 12, 2006, my own spiritual leader, His Highness the Aga Khan, called “the pursuit of human dignity” a “moral imperative” to which “we must work towards and think about on a daily basis.”
Honourable senators, I cite these various examples because I know that senators of many faiths share these beliefs. We still have much to learn from science, but should our collective wisdom not dictate a health care policy that privileges, above all else, these three values: love, compassion, and human dignity?
These are our shared values — Canadian values. The Canadian government must play a leadership role.
Besides fast-tracking clinical trials for the angioplasty treatment, the government should coordinate with provinces to ensure proper follow-up care for patients who have chosen to undergo the angioplasty treatment outside Canada.
As Senator Cordy pointed out, the MS Society of Canada’s call for a nationwide registry seems an obvious policy step and opportunity for federal government leadership.
The Hon. the Speaker pro tempore: I regret to inform the honourable senator that her time is up. Is the honourable senator prepared to ask the chamber for more time?
Senator Jaffer: May I have five more minutes, please?
An Hon. Senator: Yes.
The Hon. the Speaker pro tempore: Yes. Five minutes is granted. The honourable senator may continue.
Senator Jaffer: Nonetheless, for Canadian scientists and doctors to properly study MS and CCSVI, they need funding for clinical trials. Canadians have made landmark contributions to medical research — Dr. Banting and Dr. Best’s discovery of insulin; Dr. Mak’s discovery of the T-cell receptor; Senator Keon’s work on heart transplants — the list goes on. It will go on for much longer, hopefully to include advances in the fight against MS and CCSVI.
Senator Cordy’s private member’s bill, Bill S-204, An Act to establish a national strategy for chronic cerebrospinal venous insufficiency (CCVI), is currently before the Standing Senate Committee on Social Affairs, Science and Technology, which is ably and judiciously chaired by our colleague Senator Ogilvie.
I have the utmost confidence that the bill will be accorded due priority and consideration. Even after Friday’s developments, Bill S-204 remains incredibly important. It is essential that Canada adopt a comprehensive approach to health care for MS and CCSVI patients, and a national strategy that is vital to this goal.
The bill would require the Minister of Health to convene with provincial and territorial health ministers for the purpose of developing a national strategy that would institute clinical trials for CCSVI treatment and estimating and identifying appropriate funding for clinical trials in Canada and for tracking Canadians who have been treated for CCSVI.
In short, the bill calls on the Government of Canada to show leadership by guaranteeing Canadians access to a high-quality, comprehensive health care system, while promoting Canadian values.
Honourable senators, our Canadian government has the opportunity to honour Canadian values by demonstrating leadership and by ensuring that desperation is met with compassion, that fear is met with love, and that the scourge of disease is met with respect for human dignity. I hope and pray that Canada will respond to Roxane Garland’s obituary.
Hon. Jane Cordy: Will the honourable senator accept a question?
The Hon. the Speaker pro tempore: Will the honourable senator accept a question?
Senator Jaffer: Yes.
Senator Cordy: Honourable senators, the announcement of clinical trials is a small step, although a lot remains to be done. I was surprised that the press release said it was a pan-Canadian study. Yet I live in Nova Scotia and no one from Atlantic Canada will be able to take part in those clinical trials because they will only be taking place in British Columbia and Quebec. I do not think that is pan-Canadian, but perhaps the honourable senator can clarify that. Also, there will be 100 patients. That is fewer than 10 patients per province and territory.
Does the honourable senator think, first, that “pan-Canadian” should mean across Canada? Second, does she think the study should involve more than 100 patients? An average of fewer than 10 patients per province or territory seems pretty small to me.
Senator Jaffer: I thank the honourable senator for the question. This is certainly not a pan-Canadian study. This is a study of 100 patients and, from what I understand, it is in only Quebec and my province of British Columbia. However, more important is that the minister indicate to the provinces, no matter where the surgeries occur, that people should get help in their provinces so that there are aftercare services for the people who have these treatments done abroad.
Senator Cordy: I thank the honourable senator for sharing the story of Roxane Garland. Her death, I believe, resulted because she did not get follow-up care and the honourable senator certainly indicated that in her story.
I attended a conference for MS and CCSVI on the weekend, and I heard story after story about people not getting follow-up care. Does the honourable senator not think that the Canada Health Act says that people should be receiving follow-up care?
Senator Jaffer: Not getting follow-up care in Canada is absolutely unacceptable. As I set out in my example, if one broke one’s leg outside of Canada and came back to Canada, one would get follow-up care. However, if one underwent a procedure for MS outside of Canada and returned to Canada, one would not get follow-up care, and that is unacceptable.
Hon. Claude Carignan (Deputy Leader of the Government): I see that the debate was adjourned in the name of Senator Harb, but I did not think he had anything to add to the debate. No other senator has indicated an intent to participate in the debate on this inquiry. As a result, I propose that we close the debate.
Hon. Claudette Tardif (Deputy Leader of the Opposition): Honourable senators, on this side, Senator Merchant has expressed an interest in continuing the debate.
(On motion of Senator Tardif, for Senator Merchant, debate adjourned.)