Mr. Speaker, I would like to say that this government echoes the member for North Vancouver in his compassion for Canadians suffering from rare diseases.
This member has been touched personally by a rare disease in his family and has brought that real-life experience to the House in a way that I have not seen any other member do in the short time I have been here. The member for North Vancouver has approached this issue with passion, compassion, empathy, understanding, and with the knowledge of how to get things done in the House of Commons.
In a time where we are in a minority Parliament and a lot of people talk about the toing and froing and the partisanship of the House, it is, I think, a testament to the member for North Vancouver that he was willing to work with other members of the House, including myself, to come up with wording that would have an effect in the long term, wording that would actually mean something a year from now or five years from now, and wording that would help people with rare diseases.
This would not have happened without the intervention of the member for North Vancouver and his motion and, may I say, it would not have happened without the courage of his family, his son and his grandchildren.
As we move forward with this motion, I look forward to seeing many positive results because rare diseases are generally lifelong conditions, resulting in a lifetime of struggles for patients and their families.
Given the limited amount of information about these diseases, some of which may affect maybe up to three people in Canada, very small numbers, getting diagnosed is even a challenge and once diagnosed, there are often limited treatment options, which are often very expensive.
Once a drug is licensed, decisions are needed regarding whether it would be paid for publicly while patients wait for access to therapy. Manoeuvring through our health care system can be daunting, particularly when dealing with the day-to-day challenges of a life-threatening illness or disease.
I would also like to call to the members' attention the role of drug manufacturers that are setting extraordinarily high prices for these drugs, both in Canada and internationally.
I understand that treatment can run upwards to $1 million per year, per patient, in some cases. Clearly, no single person can afford these costs, leaving governments to determine whether and how these drugs should be publicly reimbursed.
This government takes this issue very seriously. As I mentioned, I have worked very closely with the member for North Vancouver to make several amendments to the proposed motion. These amendments would allow us to explore a wider range of options for addressing the challenges posed by rare diseases.
However, we recognize that we cannot respond to this issue alone. Patients and caregivers, health care providers, provinces and territories, medical researchers and the public, which ultimately foots the bill for treatment, all have roles to play in responding to these challenges facing Canadians suffering from rare diseases. The amendments we have proposed reflect the diverse and essential roles of each stakeholder.
Our amendments highlight the need to work with the provinces and territories, in particular. They have an important role in delivering health care benefits to their residents, including determining public drug coverage for their residents. As such, they are faced with the majority of difficult decisions regarding whether and how they will fund treatments for rare diseases. These decisions are complex, not only because of the sheer cost of the drugs, but because there is often limited evidence on how they work.
The common drug review was created to assist jurisdictions with these challenges and the reimbursement costs. It plays an important role by reviewing drugs for clinical and cost effectiveness, and providing evidence-based recommendations to drug plans on whether and under what conditions a drug should be publicly reimbursed.
I should note that the Standing Committee on Health recently wrote a report on the common drug review. In the response we committed to continuing discussions with the provinces and territories with respect to how the common drug review looks at drugs for rare diseases. Our amendments therefore reflect the fact that the common drug review needs to be included in any considerations of an advisory body for rare diseases.
We have also further proposed that the motion be amended to examine options to improve access to rare disease treatments by building on recent work undertaken with provincial and territorial governments under the national pharmaceutical strategy.
The government believes that there are a range of possibilities to be examined with the provinces, territories and other stakeholders. Drugs for rare diseases raise a host of complex issues that are by no means unique to Canada. Other countries are grappling with the same problems and struggling to find appropriate, sustainable and ethical solutions. Even defining what counts as a rare disease is problematic as there is no international consensus on it.
Our amendments therefore reflect the need for more consideration before deciding on a single definition. We also need to be realistic with our timelines for meaningful progress on these issues recognizing the amount of work that needs to be done and the range of stakeholders involved. It is for this reason why our amendments propose extending the timeline to 12 months.
There is evidently much more work to be done with the stakeholders and with governments here in Canada and abroad. We need to ensure that we have the right approach with regard to research, regulations, and the right approach to reimbursement. We need to ensure that the processes by which we make decisions are transparent, evidence-based, rigorous, and take into account the patients' needs. We need to ensure that all parties, federal, provincial and territorial governments, researchers and health care providers have the right tools with which to make these decisions.
I believe that the motion that has been proposed with the amendments is another step in the right direction. I want to say that it has been a pleasure working with the member for North Vancouver. I have had the opportunity to know the member on a personal level and I am really touched on how he has approached this issue, and the impact that this issue has had on his family. I am sure there are many families that can relate to the member for North Vancouver's very difficult challenges, but together I think the House is making a statement, that progress can be made, and it will be made and the lives of Canadians will be better for it.
