Mr. Speaker, I rise today to speak to Motion No. M-426, which calls on the government to respond to the challenges faced by patients with rare diseases and disorders. I thank the member for North Vancouver for making us aware of this important issue today. The lives and quality of life of many young people—most of these patients are young people—are at stake today in this debate.
This is a very important motion that sheds light on a regulatory problem that limits access to drugs to treat rare diseases, either because they are not allowed on the market or because they are not covered by provincial drug insurance plans.
Before I address the issue that is at the heart of the motion we are debating today, I would like to say that the Bloc Québécois cannot vote for this motion as is, not because of the principle behind it, but for a very specific reason that I will explain. The Bloc Québécois is in favour of the motion, but it requires an amendment, which we proposed to the sponsor of the motion, concerning how this motion applies to Quebec.
Under the 2004 10-year plan to strengthen health care, Quebec is not subject to the common drug review or the national pharmaceutical strategy. The 10-year plan to strengthen health care recognized Quebec's right to withdraw unconditionally, with full financial compensation, from any national health initiative.
I would like to reiterate certain principles set out in the 10-year plan to strengthen health care. The plan clearly states that nothing shall be construed as derogating from Quebec's jurisdiction over health.
We would have liked the Conservatives and the Liberals to agree to this amendment this morning so that we could go ahead with this motion today. Quebec has already set up a committee to look at this issue. This committee has begun looking at another way to deal with rare diseases and verify the efficacy and safety of drugs, taking into account their cost. This is the role of the common drug review. Quebec has its own drug review program, known as the Conseil du médicament du Québec, and is therefore not subject to the federal program. We need no lessons from the federal government, because Quebec is completely independent in this regard.
As such, any national strategy or policy concerning rare disorders and governing access to drugs to treat those disorders cannot apply to Quebec.
The only recommendation in this motion that can apply in Quebec is (g), which is about the drug approval process and clinical trials, issues that clearly fall under Health Canada's jurisdiction. We may be able to build consensus on this motion based on the proposal in (g).
That being said, as everyone knows, in the spring of 2007, the federal Standing Committee on Health conducted an in-depth study of the CDR, the common drug review. The committee then submitted a report containing five recommendations. The Bloc drafted a dissenting opinion to reiterate its preference that the national strategies for rare disorders not apply to Quebec. Instead, we asked the federal government to establish a specific approach to the evaluation of drugs for the treatment of rare disorders.
Last week, we received the government's response to the report. Even the government was quite vague with respect to recommendation 5, which called for a real policy on rare disorders. We are very disappointed in the government's response.
Here is what the government said in its response to the committee's report on the common drug review.
The government supports the “idea of exploring options”. It also recognizes that there might be “merit in exploring approaches to assessing these drugs as one of the first steps”, and in the end, it said it was interested in “pursuing discussions”.
That gives us some idea as to whether the government will support this motion or not. The response is pretty lukewarm and bears little resemblance to the proposals in the member for North Vancouver's motion. It is highly unlikely that the government will support this motion. I would be very surprised and also very pleased if the government decided to move more quickly and make the rare disorders policy more proactive and more considerate of the circumstances surrounding rare disorders.
As I said earlier, the Conseil du médicament du Québec has already begun working on a draft of the evaluation criteria for drugs to treat rare disorders. There must be specific criteria because rare disorders are not like other, more common disorders.
We know that in the United Kingdom, for example, 1 in 50,000 inhabitants has a rare disease, while here it is 1.1 in 10,000 inhabitants. That is why, in the approach set out in the motion—and this is what Quebec focuses its research on—we have to take into account the fact that clinical trials have been conducted in other countries in addition to those done in Canada and Quebec. Then we could have a better sample from a larger population base, instead of basing research only on the population of Canada. In fact, as far as certain diseases in certain countries are concerned and other diseases in Canada and Quebec, we could have better sampling and a much broader assessment of the safety and effectiveness of the drugs. That information could be used in approving the cost of drugs.
That is where the CDR or common drug review comes in, since it could recommend that a drug be covered. Quebec is not subject to a national strategy because it has its own drug review program.
Often the reason provided for not covering the payment of a drug treatment for a rare disease is that it is too costly and the patient base suffering from the disease is too small. The cost is astronomical.
In my opinion, we have to look at the situation from a human perspective. When we can offer not only a better quality of life to people with rare diseases, but also greater longevity, this certainly touches us emotionally. By agreeing to pay for a drug, regardless the cost, we are offering patients a better quality of life.
I know the hon. member presented this motion because people very close to him have suffered from a very rare disease and access to drugs was not possible.
I know that the hon. member is doing a good job raising awareness within his party and that is why I sincerely hope the Bloc Québécois amendment will be accepted in order to exempt Quebec from the strategy we are debating this morning. Nonetheless, we could support a national strategy for all of Canada, except Quebec, just to show some openness.
In Quebec, I met with one of the members of the committee, and he was saying that this issue has to be addressed differently and there should perhaps be more progressive reviews that take into account different factors. Then we might be able to approve the drugs for rare diseases.