Mr. Speaker, I certainly appreciate the remainder of my time to speak to this important motion. As I mentioned before, I am always honoured to stand in the House to speak on behalf of the people of Cambridge and North Dumfries.
The government understands the seriousness of the issues faced by Canadians who suffer rare diseases. We have taken action on these issues for this vulnerable population of Canadians and we have every intention of continuing to do so. This government recognizes the challenges facing Canadians who suffer from rare diseases, including limited treatment options, high costs and uneven approaches to reimbursement by the provinces and territories. We have worked with the member for North Vancouver and we appreciate the cooperation of the member. I am pleased today to move the following amendment. I move:
That the motion be amended by deleting all the words after “That” and substituting the words:
“in the opinion of the House, the government should respond specifically to the challenges faced by Canadians with rare diseases and disorders, in collaboration with provinces and territories (P/Ts) and stakeholders by:
(a) examining options for defining serious rare diseases;
(b) examining options, including the possible creation of a specific fund, to improve access to rare disease treatments, building on the recent work undertaken by federal and provincial/territorial governments under the National Pharmaceuticals Strategy;
(c) considering the establishment of a multi-stakeholder advisory body, including the Common Drug Review, treaters and patients, to recommend treatment access for life-threatening or serious rare disorders, based on scientific standards and social values;
(d) exploring options to consider national and international expert advice in developing criteria for treating patients based on scientific evidence and patient impact, and to link these activities with ongoing post-market monitoring of real world drug safety and effectiveness;
(e) considering options to encourage research and development into treatments for rare diseases and other unmet health needs;
(f) considering internationally accepted standards for conduct of clinical trials in rare disorders appropriate for the challenges inherent to very small patient populations;
(g) considering how Health Canada's work on a progressive licensing framework could provide appropriate support to the design of clinical trials for very small patient populations and appropriate review of evidence submitted from these trials; and,
(h) reporting the progress accomplished to the House within 12 months”.
Rare diseases mean just that. They are rare. That is the good news. Very few people get them--