Thank you, Madam Chair and subcommittee members.
Thank you for the opportunity to speak today about CCSVI and its relationship to MS. I am speaking as a representative of the MS Society of Canada with previous experience as a basic researcher, with a focus in multiple sclerosis.
For 60 years, the MS Society has journeyed with tens of thousands of Canadians who have lived with this devastating disease called MS. With them, we sense the despair that MS can bring and grasp the desire and hope that one day the answers to this disease might appear. We fully appreciated how excited people affected by MS were when the news of CCSVI came onto the public stage.
As an organization that cares deeply for the well-being of all people affected by MS, we want to ensure people have genuine hope. Dr. Zamboni's hypothesis on CCSVI has stimulated conversation about multiple sclerosis worldwide. As with any new hypothesis, many questions remain, and early results need to be replicated and validated in well-designed, controlled studies.
While the pace of research seems frustratingly slow, it is critical to produce evidence that can be used to make reliable therapeutic decisions. As Dr. Zamboni and his colleagues have stated, today and before now, the results of the pilot study warrant a subsequent randomized controlled study.
In November 2009, the MS Society issued a request for research operating grants to study the relationship between CCSVI and multiple sclerosis and to identify what treatment potential it may offer to people living with MS. This past Friday, we announced, in collaboration with our U.S. counterparts, the National Multiple Sclerosis Society, a $2.4 million commitment to CCSVI and MS research. This will fund seven research projects in North America.
All of the Canadian research projects that were recommended for funding by a review panel of non-conflicted international experts, comprised of interventional radiologists, vascular surgeons, imagers, and neurologists, will be funded by the MS Society of Canada. The MS Society has committed $700,000 to these four projects.
These projects are blinded in randomized controlled studies that are looking at imaging techniques and the prevalence of stenosis in patients with MS. As well, these studies will look at various populations such as children and families, where they'll use twins to look at genetic linkages. These studies are also studying linkages to MS pathology, as well as how iron deposits may be linked to CCSVI and multiple sclerosis.
The goal of funding controlled trials is to evaluate outcomes in the most objective way possible. Many neurologists and researchers have shown scientific curiosity in regard to the concept of CCSVI and are assessing it on the basis of evidence, as they would with any other issue. We hope the studies we fund will resolve conflicting data from previous research.
For example, Dr. Zamboni's research team suggests that blood drainage is impeded by venous restriction. However, a research group working in Germany and the U.K. recently published a study suggesting that cerebral venous drainage in patients with MS is not restricted. It is because of the differing data that they and many other clinicians and researchers agree that investigation of neck vein abnormalities needs further assessment.
By funding research into MS and CCSVI, the MS Society joins other MS societies and governments around the world to ensure that the answers about CCSVI are found as quickly as possible. If evidence is found that treatment of CCSVI is a valid therapeutic treatment option for MS, the MS Society will advocate vigorously to make testing and treatment widely accessible for people with MS.
Because of our long association with Canadians affected by MS, the MS Society recognizes the hope that Dr. Zamboni has brought to people with MS. We certainly understand how people might wish this proposed treatment to be available to them immediately.
It is important to recognize that the barrier to accessing treatment is the lack of data supporting the hypothesis both for diagnosis and for intervention. This data is required by provincial governments, physician organizations, and hospitals in order to make evidence-based decisions as to whether CCSVI should be treated in people with MS.
This is why the MS Society is funding research into CCSVI. This is also the reason we are advocating for additional research to be funded by the federal government to ensure this evidence is available as soon as possible.