Madam Speaker, I would like to congratulate my Conservative colleague for taking the initiative to move this motion for more information to be provided to those living with multiple sclerosis. We will support this motion.
This motion also gives us the opportunity to talk about multiple sclerosis and the impact this disease has on the lives of thousands of Canadians.
Canada is one of the countries most affected by this disease. In fact, it is estimated that between 55,000 and 75,000 Canadians have this disease. These people hope that science will eventually enable them to heal.
We know that multiple sclerosis is a disease of the central nervous system and that it attacks the myelin sheath, or cover, that protects cells in the central nervous system.
What does this mean for people who have this disease?
Many patients have vision problems, muscle stiffness, loss of balance, extreme fatigue and, on occasion, total paralysis. Some people have to use a wheelchair to get around. We know that there are still many barriers to mobility in our buildings, streets and homes. Some people have to renovate their homes, others have difficulty finding suitable housing, and still others must live in long-term care facilities. Daily life is not easy for those suffering from multiple sclerosis. The people who suffer from this illness know what I am talking about.
However, these people teach us life lessons. Most people who suffer from multiple sclerosis continue to work and lead an active life. Our society should recognize them and better integrate them.
Take the example of Denis Baribeau from Montreal. As is the case for most people suffering from multiple sclerosis, the illness manifested itself early in his life. Mr. Baribeau discovered that he had multiple sclerosis when he was 26 years old. He had just finished university and was preparing to enter the job market.
It is a shock for us and our families to be told by a doctor that we will suffer from a chronic and incurable disease for the rest of our lives. When we lose our physical abilities, we lose them forever. Every flare-up leaves us a little less mobile and has lasting and disabling effects. It is difficult to accept this reality. And yet, people with this illness continue to fight, and to lead as normal a life as possible. Mr. Baribeau continues to work and also to raise our society's awareness about this illness.
However, it is difficult to remain active and have a good quality of life, especially for those who need drugs and cannot afford them. There are medications available that act mainly on the immune system. Some medications slow down the progression of impairment, whereas others help manage symptoms. However, the drugs are often expensive. It can sometimes cost up to $30,000 a year for this treatment. It is beyond the reach of those without a drug insurance plan.
The purpose of the first part of my speech was to help members understand what it is like to live with multiple sclerosis and also to show the urgent need to find solutions.
For years, as the hon. member opposite mentioned, numerous researchers have put all their energy into finding a solution for this disease. One breakthrough that the scientific community feels is significant is chronic cerebrospinal venous insufficiency, or CCSVI. The term was coined by Dr. Paolo Zamboni, a researcher from the University of Ferrare in Italy. He observed that, in some patients with multiple sclerosis, veins in the neck and head are blocked or narrowed and therefore unable to efficiently remove blood from the brain and spinal cord. Phleboplasty was suggested as a potential treatment for patients. It consists of inserting a catheter into a blocked vein and inflating a balloon to dilate the vein. These treatment seems to have had results with certain patients, who said that they have regained some feeling and mobility.
A number of studies are taking place in Canada and elsewhere in the world to confirm the research results. The Multiple Sclerosis Society of Canada, in partnership with its American counterpart, is currently conducting studies.
In addition, the federal government has decided to fund phase I and II clinical trials on CCSVI. The goal is to determine whether there is a link between venous anomalies and multiple sclerosis. Researchers do not yet agree on the link between the CCSVI treatment and multiple sclerosis.
In fact, doctors and the scientific community do not yet have all of the data needed to understand CCSVI and to offer safe, effective treatment to patients. This lack of data means that CCSVI is not yet available in Canada.
Sometimes, patients travel abroad to get treatment without knowing if the method used is reliable and risk-free. The information available in Canada is limited and fragmented. Some studies show a link between venous insufficiency and multiple sclerosis, while others reject that hypothesis.
So, a lot of information is missing and this prevents people from making informed decisions. Moreover, we do not know how many patients have received innovative treatments and how they have reacted to such treatments. Let us also not forget that research protocols, diagnostic procedures and treatments vary from country to country. This lack of national and international standards is a major impediment to the treatment of people suffering from multiple sclerosis.
Yet, it is critical that patients get all the information necessary to make informed decisions. After all, they are the ones who live with MS and they should be well informed. That is why the motion presented by the hon. member opposite is welcome, since it provides that these people should have access to more information. That is extremely useful to patients. Therefore, it is critical that the Conservative government work with scientists to get the most accurate information available for patients and their families.
I should point out that a database project is underway at the Public Health Agency of Canada. The agency is developing a new monitoring system to collect data on the condition of patients, on what is being done in terms of treatments, and on the findings of studies. We hope that this project will be developed quickly and will be based on scientific standards, in order to provide patients with the information they need. That should have been done a long time ago, considering that the treatment was made public in 2009.
I also remind the government of the importance of allowing the public to have access as quickly as possible to scientific data on venous insufficiency. In June, the federal government announced that it would fund clinical trials for phases I and II, but we still do not have any information on the research protocol, the timeframe, or the number of participants. It is also important to remind the government that all phases of the clinical trials must be completed in order to have reliable results. There are four phases and we are currently funding only the first two. We would like to have more details on these trials but, as we know, it is always difficult to get clear answers from this government.
I wish to stress how important it is to focus on the fight against multiple sclerosis. People who suffer from the disease, their families and Canadian society as a whole all have an interest in finding scientific answers to this disease. Let us show leadership. Canadian researchers have all the skills necessary to get results, and we are anxiously waiting for these results.
I thank the hon. member opposite for promoting better access to information. As long as scientists agree among themselves, we will support this motion.