Mr. Speaker, I am pleased to support the bill brought forward by my colleague from Etobicoke North.
I will not go into the statistics or the number of people in Canada who are living with MS. I will not go into all of the details of the misery of their lives and the tragedy of the quality of their lives because everyone has spoken about that and it is known, as we all know.
I want to speak about a fact that the member was talking about. One of the aspects of a quality health care system is that the people who need that health care system get the best possible quality of care when they need it in a timely manner.
We know that with the advent of CCSVI many people who live with MS are desperate. They are living with a debilitating disease that, in fact, can cause them to become completely dependent on others over a short period of time, depending on how the disease affects them as individuals. People are desperate to maintain their quality of life, their mobility, their ability to work, and be producing members of society. Therefore, when something comes up that promises to help them, and when it is shown that in some countries and in some areas of the world people are being helped, everyone wants to know what to do.
It is the responsibility of Health Canada and the Government of Canada to ensure that those patients know what the results of a particular trial, drug, therapy or intervention are, as well as whether there are side effects, so that they know what those side effects are, and also the effectiveness of the therapy or intervention. It is very important for the government to move quickly on this.
In the spring of this year, which is a long time ago, the Liberal Party with the member for Etobicoke North stood and asked for clinical trials to begin in this country. The foot-dragging that went on in the last two days of proposals going out for clinical trials is appalling, considering it affects the quality of life of those people afflicted with MS and their ability to live normal lives. Six or eight months is a long time in people's lives. To have to wait that length of time is, without putting too fine a point on it, insensitive, although I could use other words.
Now the trials have been set out and proposals are being asked for, but they are phase I and phase II proposals. The phase I proposals, as we have heard, are small proposals that look at the safety of the particular intervention or drug. The second phase obviously looks at the effectiveness or the efficacy of that intervention, drug or therapy.
There is a third phase that the member is asking for, which I think is key because it does a comparison of the effectiveness of the new drug procedure or therapy against the ones that have already been in existence. Is it better, is it achieving better results, and will it be more beneficial to patients if they have access to it or not? That is a very key part of clinical trials.
That is not being done and I need to know why. It astounds me that it is not being done because if we are to adopt something, let us say it is proven safe and the effectiveness is good, then one needs to be able to give patients the information so that they can give what is known in medicine as informed consent. They know what they are comparing, what they are looking at, what they are facing, and they are able to make reasoned and informed choices. Patient information is a cornerstone of good quality of care. That is the second thing that the member is asking for.
However, there are other things the member is asking for. Right now people are, in fact, desperate and going out and participating outside of the country in areas where CCSVI is available. We know that there have been some side effects. We know that in some cases patients have only been helped temporarily. We know that when some of those patients come back here, they are treated as if they are pariahs. They are not allowed medical care. They are not allowed assistance that they may need when they have those side effects.
It is like a punitive measure that says, “How dare you go off and try something because you're desperate? Well, if you do that we're not going to take care of you when you come back”. That is the sort of callous and punitive measure that I think the member is fighting against. She is saying that if people went to Switzerland to ski, broke their leg, and came back to Canada, they would get treatment or physiotherapy in Canada.
Why are we discriminating against this group of patients who, out of sheer desperation, because of a great deal of foot-dragging from the government, have been unable to get the answers they seek and the information they want about clinical trials?
That is one of the most important things that she is asking for. She also wanted to talk about tracking individuals who have received clinical trials in multiple centres across Canada so that we can have an information base. Then we would be able see how people are responding. We would be able to see long a response takes, the differences in response, the factors that help people respond sooner or later or better and the progression of the treatment.
Tracking those aspects is an important part of patient information, of patients knowing what they are choosing and why they are choosing it, and of understanding all the side effects, positive or negative, on different people across the country. When doing a clinical trial, phase I deals with a small group and phase II has a somewhat larger group, but when the drug or intervention or procedure is put out there, it deals with a very large and diverse population, and that population, in all its diversity, needs to be tracked to see how it is responding. That is an important piece of patient information. It is a sort of postmark or surveillance to use in deciding whether this procedure is worth doing.
The member is asking for urgency in all of this. The member was suggesting that by March 1, 2011, we set up an advisory panel to be composed of experts who have been or who are actively engaged in imaging or treating individuals with CCSVI, as well as one patient advocate who has been a patient and who has had CCSVI. In this way we would have a group keeping track of the issue and advising the minister of the best way to go about changing things. I think urgency is what I am hearing, and I think this lack of urgency is what is concerning the member and most of us.
At the end of the day, if we are going to provide the best health care to Canadians, we are going to have to do our homework. We are going to have to invest in good trials, trials that will give the information people need, and that includes a phase III trial. We are going to have to look at post-introduction of procedure surveillance. We are going to have to have an open place where people can track and understand side effects and understand what is going on.
We are going to have to treat these patients, regardless of whether they did or did not have CCSVI, as patients who deserve equality and equity of care and access to care when they need it.
There is urgency, and there are some very concrete steps that the member has asked for in this bill. I hope that we will hear more than lip service about caring for patients, more than lip service suggesting that we want to do the right thing. There is a lot of lip service going on around here; let us see some action.
I want to thank my colleague for bringing in this bill. I give it my wholehearted support.