Madam Speaker, multiple sclerosis is a very complex, unpredictable disease that often disables those who suffer from it. The chance of being diagnosed with multiple sclerosis in Canada is among the highest in the world. Women are three times as likely to get multiple sclerosis as men. This disease is most often diagnosed in young adults between 15 and 40.
Multiple sclerosis affects 2.5 million people around the world. Studies show that the further away from the equator, the greater the incidence of the disease and Canada is no exception. Between 55,000 and 75,000 people have this disease in Canada, and more than 1,000 new cases are diagnosed every year, or three new cases a day.
Multiple sclerosis is the most common neurological disease affecting young adults in Canada. This disease also affects children, some as young as three years old. The impact of the disease is felt by everyone around the person suffering from it. The effects of MS are unpredictable and vary greatly from one person to the next. Between 80% and 85% of people with MS are diagnosed with the relapsing remitting form of the disease. Over time, from 50% to 70% of people originally diagnosed with relapsing remitting MS will worsen into secondary progressive MS, and will gradually become more disabled.
This disease affects vision, hearing, memory, balance and mobility. In addition, this disease has physical, emotional and financial effects that are life-long, which considerably impairs the quality of life of MS patients. Unfortunately, there is no cure for this disease; only treatments to alleviate the symptoms. However, in his studies, Dr. Zamboni apparently established a link to chronic cerebrospinal venous insufficiency. CCSVI is an anomaly caused by the narrowing of the veins that drain oxygen-depleted blood from the brain and the spinal cord. The theory behind the link between CCSVI and multiple sclerosis is that poor drainage of the oxygen-depleted blood could cause a back-flow to the brain, which would lead to a lack of oxygen in the brain and deposits of iron in the tissue. That would trigger an immune response associated with multiple sclerosis.
There is not enough evidence to conclude that CCSVI is the cause of multiple sclerosis. It is only possible to indicate that in some people multiple sclerosis may occur in association with impaired venous drainage of the central nervous system. For now, the data published about venous anomalies that could play a role in the occurrence or spreading of multiple sclerosis are contradictory. It is a subject that requires a clinical study.
The goal of the clinical study will be to determine if MS patients show venous abnormalities that differ from age-matched controls. The goal will therefore be to define, based on conclusive evidence, mechanisms of how venous drainage from the brain might be of relevance to MS, an issue that has not yet been adequately explored. Clinical studies are usually conducted on human subjects. Given the complexity of a research protocol, we need to ensure that it is as rigorous as possible, so as not to skew the results, but above all, in order to protect the health of patients and participants. We understand the importance of this issue for people who are suffering from MS.
However, we must be very careful in order to ensure the safety of everyone participating in the clinical trials. As a result, we need to establish the protocol in a responsible manner as soon as possible, but without compromising patient safety. The research protocol must ensure that the financial resources needed to conduct the study are available and must seek out new collaborations with various experts. This will require significant collaboration among researchers. These experts and researchers must come not only from the field of medical research, but also from organizations such as the Multiple Sclerosis Society of Canada.
Furthermore, we must not forget the important role of the provinces and territories. We must establish the number of patients to recruit, the frequency of consultations and imaging tests, the kinds of data to record, as well as detailed procedures for each phase of the study. This stage will ensure that all participants will be subjected to the same protocol, in an effort to strengthen the results of the research.
It is also important that a monitoring committee be established to oversee the study's progress and to react to any problems that could arise in terms of research or safety. The study should also recruit and select participants and obtain their consent to participate in the study. It is important to conduct a truly randomized trial to ensure that the results are well founded and to clearly establish what link exists between CCSVI and multiple sclerosis. It is important to share the results of the clinical study so as to not spread false hope among those with this terrible disease. It should be noted, as was specified in a number of studies, that each person reacts differently to Dr. Zamboni's treatment.
It is essential for doctors and other intervenors in the medical field, as well as for the patients, that information be shared about the impact and the link between CCSVI and multiple sclerosis. Many patients feel isolated because of the lack of understanding about this disease. These people feel overwhelmed by desolation, despair, lack of understanding, guilt and shame. For some, the suffering leads them to isolate themselves and they refuse to go out for fear of what people, in their ignorance, may say.
It is a vicious cycle that results in them more and more often finding refuge in their solitude. In many cases, patients feel misunderstood by doctors who apply their knowledge without always taking into consideration the strong emotions that people living with this disease face. Patients must live alone with their body, day in and day out, and that body no longer responds. They have to live with a physical and nervous fatigue that only increases with time. In many cases, once they build up some trust, patients feel less scorned by health professionals.
Thus, it is crucial that we have clear information on the link, impact and side effects in order to be able to make an informed decision concerning patient treatment. It is important that doctors and patients co-operate fully with one another. It will also be important to update the databases of the multiple sclerosis monitoring system regularly. This system will help monitor outcomes and identify the most effective therapies. It will also help health system planners identify future needs and plan resource distribution more effectively through the system administrator.
In order to help achieve medical breakthroughs in relation to MS, it is essential that the federal, provincial and territorial governments come together, particularly in order to make the necessary decisions regarding treatment and medical services. Knowing that health care and public health coverage differ from one province to the next, it is crucial to ensure participation among all levels of government. Co-operation is needed not only among governments, but also among the other organizations and professional health associations, and the people who have this degenerative disease, namely, the patients.
Multiple sclerosis is a ongoing battle for those suffering from this disease. They count on medical advances to help cure their suffering. For that reason, it is of the utmost importance to begin the clinical trials as soon as possible, but in a responsible manner. Serious and vigorous protocol will be needed to ensure the safety of those participating in the trial. The final results of the clinical trial must show a clear and precise link between CCSVI and MS, and the advantages and disadvantages of the treatment. As a result, an overall picture will help patients to make the best decision possible regarding their treatment.
These results will also have to be compiled in the monitoring system so that they can be consulted by people with MS and shared with other countries so that true medical advances can be made in the treatment of this disease. There are all kinds of partners, and they must be consulted. They include patients, doctors, researchers, health care stakeholders and the provinces. The provinces and territories provide the care and pay for treatments.