Madam Chair, I appreciate the opportunity to speak in this take note debate on MS.
Let me say first how encouraging it is to have a health minister who is so passionate about MS research and the neurosciences. I will use my time today to highlight how our federal government is leading on neurosciences, and how the debate on MS CCSVI treatment is so desperately needed to occur, not in the House of Commons, but in the provincial legislatures across Canada.
I have had the tremendous benefit to know an incredible lady by the name of Jeanette Elliott, who runs the MS Society of Simcoe County. She is probably the most enthusiastic, passionate and steadfast volunteer one will ever meet. She has taught me a fair bit about MS. I am an eager supporter of my local MS branch because Jeanette's enthusiasm is certainly contagious. One cannot meet her and not want to help out. We are actually planning several fundraising events this summer that include a boat cruise, a volleyball tournament and dragon boat races on Kempenfelt Bay.
We have tremendous support for MS in Barrie because we recognize that MS is a devastating condition. It affects young adults in their prime, causing disability and distress. Jeanette tells me Canada is thought to have one of the highest rates of MS in the world. The total cost for health care and lost productivity associated with MS in Canada is estimated to be a staggering $950 million.
The government recognizes the importance of better understanding of neurological conditions such as MS and how they affect Canadians. Reliable information is the basis for effective programs and policies that will meet the needs of people with MS, their families and caregivers.
One year ago Jeanette Elliott began a petition at Barrie City Hall calling for federal investment to support a national study in neurological disorders. A mere six months later, in June 2009, Jeanette joined me at the MaRS centre to watch our health minister announce an investment of $15 million over four years to support a national study on neurological diseases. This study will fill gaps in information on the extent of neurological diseases and their impact on Canadians and is being co-led by the Public Health Agency of Canada and the Neurological Health Charities of Canada.
The Neurological Health Charities of Canada is a collective of 18 charities, including the MS Society, coming together to improve the quality of life for all persons with chronic brain disorders and their caregivers. In the planning of this national study, the Public Health Agency of Canada and the Neurological Health Charities have worked closely with the neurological community to identify the community's needs and priority areas for study. This included a wide-reaching public consultation with more than 3,000 people affected by neurological disorders.
Through this national population study on neurological conditions, we will learn more about Canadians living with neurological disorders such as MS, and how neurological conditions affect Canadians. The outcomes of this study will be of great value in guiding policy and program planning around neurological disorders.
As has been mentioned by others this evening, this government has been a big supporter of neurological sciences. In 2008-09, $120 million was invested for neurological disorders and $5.3 million was invested for MS. As the minister mentioned, the CIHR is eager to see applications on this CCSVI treatment.
Speaking specifically about MS, I am fascinated by the possibilities with the CCSVI treatment. I come from the beautiful city of Barrie, which is home to one of Canada's leading doctors, and a good friend of mine, Dr. Sandy McDonald, who I suggested speak before the neurological disorders subcommittee. Sandy is a brilliant cardiovascular surgeon and is known locally as the local saint. He was using his own funds, with no legal protection and tremendous exposure to help patients with MS. Let me tell the House about two of his patients, two individuals from my home area of Simcoe country.
Lianne Webb, a 48-year-old woman from Hillsdale, started suffering severe migraine headaches in her mid-twenties. She began to lose control of her right arm and leg. She struggled daily with chronic bouts of fatigue. Ms. Webb was diagnosed with MS in 1992. After 18 long years of living with this disease that had so profoundly affected her and her family, she went to see Dr. McDonald.
Through imaging, Dr. McDonald saw the blockages in Lianne's jugular and diagnosed her as having CCSVI. He treated her with a balloon angioplasty on February 11 of this year. Lianne described the procedure as simple, painless and only lasting a few hours, including recovery time. She said that she no longer has symptoms, her fatigue is gone and she has stopped taking the medication. She is working full time. She golfs and walks the course. She rides horseback at least twice a week. She finds it hard to sit down and relax because she cannot wait to try so many new things. Lianne has her life back.
Steven Garvie, a 53-year-old man, was diagnosed with secondary progressive MS about 10 years ago. Steve was unable to walk without the use of an aid, a rollator or an electric wheelchair. He was living in supportive housing for the physically disabled and was attended to by caregivers every day. They helped him shower, cooked his supper and fed him. They did his dishes and washed him up after he was done.
The agony of Steve's daily life was almost too much to bear. He was constantly haunted by the thoughts of what this disease was putting his three daughters through. He took antidepressants, and admitted to our committee that he tried to commit suicide. Steve had almost given up. That is until he saw Dr. McDonald. Steve has CCVI, and on January 29 of this year he was treated with a balloon angioplasty. Steve testified that the feeling in his left hand came back while he was on the table following a 45-minute procedure. He lifted his leg moments later.
Steve says that he went into the procedure with the hope of just stopping the progression. He was not prepared for the results. Steve was proud to tell us that he has no need for caregivers anymore. He left his housing unit three months ago. He washes for himself, cooks his own dinner and cleans up after. Steve has his life back.
I realize that there is some disagreement in Canada about the safety of the CCSVI treatment between neurological doctors and vascular doctors, but if we have learned one thing from Dr. Sandy McDonald, it is that this treatment provides hope and should be looked at by provincial health ministers across Canada.
Canadians want their provincial health ministers to look into this. Dr. Sandy McDonald says that his office continues to receive 1,000 requests a week for this service. He is at a loss to understand why the provincial governments will not allow this inexpensive and simple procedure.
The provincial ministry of health shut down the ability of the Royal Victoria Hospital in Barrie to provide this treatment. It is not the federal government that has the power to stop treatment. It is not the federal government that authorizes treatment. It is indeed the respective provincial governments.
The member for Oshawa referenced the Ontario government's health technology advisory committee report of May 2010, a month ago, the government of Mr. McGuinty, in which the committee said that this was experimental, that it was not ready.
What I cannot imagine is why some members would try to mislead patients about the source. I apologize if I am restating the obvious but I am a bit perplexed and disappointed to see people send n petitions to the health minister of Canada to allow MS CCSVI treatment when it is the respective provincial governments that provide the technology advisory committee and governs the College of Physicians and Surgeons.
The research arm of health care is funded by the federal government but the administrative decisions and treatment are done by provincial governments. Our health minister is doing her job with passion and vigour. She is supporting research. She has taken a leadership role on neurological disorders, both domestically and internationally, whether it is the investments that have been put into CIHR, the conference she is preparing for this summer of top researchers and academics, or whether it is her leadership on the international scene. Our health minister has been a leader on this front.
It is high time we had a debate like this in provincial legislatures across Canada.
I would like to read a letter into the record from Pat Farrell, one of my constituents from Barrie. It was written to Premier McGuinty. Is that not a surprise, he has addressed it to the province?
I am writing you out of desperation from my family to help my ailing wife Barbara.
She requires an emergency vascular angioplasty that has been denied for unknown reasons.
My wife, Barbara is currently in RVH suffering from MS. She has been denied this procedure...that has the potential to alleviate some or possibly all of her symptoms.
This was a treatment that she was scheduled to have performed. Several people have had this procedure performed and have improved, all at RVH. We got excited and had hope.
Unexpectedly, days before the treatment, it was cancelled....
Some in the media falsely portrayed this as a complete cure.
He realizes that this is not a complete cure but he says that it would help relieve his wife's symptoms. They are both aware there are some risks but they accept the risks. They just cannot understand why the provincial government would tell the hospital in Barrie that it is not permitted. They cannot understand why the provincial health technology advisory committee would say that it is too experimental. It is not the Canadian health technology advisory committee. It is a provincial committee.
It breaks my heart to know that this treatment is not available for Mr. Farrell's wife but he recognizes that we need provincial leadership on this file to match the federal leadership we are seeing in research.
I hope tonight's debate on MS has been informative for those on the roles of each level of government and the urgent need we have for provincial governments to actively engage this health challenge with the same zeal that we are doing so federally.
I know some members across the aisle actually have a relationship with the Premier of Ontario and the health minister who comes from, if I recall, the same region as some members. Maybe they can have a conversation and encourage them to have the technology advisory committee review this.
