44th Parliament223Government response tabledJanuary 29, 2024e-4414e-4414 (Health)KarenTompkinsChrisLewisEssexConservativeONMay 3, 2023, at 9:51 a.m. (EDT)August 31, 2023, at 9:51 a.m. (EDT)November 7, 2023January 29, 2024September 5, 2023Petition to the <Addressee type="3" affiliationId="" mp-riding-display="1">Government of Canada</Addressee>Whereas:1 in 10 Canadians have a rare disease and face immense challenges in getting the appropriate care to survive and get better;1 in 15 babies in Canada are born with a rare disease and nearly a third will die before their fifth birthday;The Government of Canada announced an investment of up to $1.5 billion over 3 years as part of the National Strategy for Drugs for Rare Diseases (NSDRD) to help improve access to new, emerging and existing drugs, early diagnosis and screening for rare diseases;Global jurisdictions, including France, Germany, the United Kingdom and Australia have exemplary NSDRDs that we can learn from; andThe Canadian Organization for Rare Disorders (CORD) has and will continue to work with governments across Canada to build a comprehensive rare disease strategy that supports patients, including centres of expertise, access to medicine and investment in research.We, the undersigned, Canadians affected by rare disorders, call upon the Government of Canada to: 1. Implement the National Strategy for Drugs for Rare Diseases (NSDRD) to help patients access the treatments they need; 2. Work with the provinces to ensure immediate access to rare disease medicine currently available in Canada; 3. Extend the funding for rare disease medicine as part of the NSDRD, indefinitely; 4. Ensure that CORD and the Regroupement québécois des maladies orphelines (RQMO) are key partners in discussions on the implementation of the NSDRD; and 5. Build out the NSDRD to include centres of expertise so that the new funding for medicine contributes to better care for all Canadians with rare diseases.
Response by the Minister of HealthSigned by (Minister or Parliamentary Secretary): The Honourable Mark HollandThe Government of Canada recognizes the importance of improving access to affordable and effective drugs for rare diseases (DRD). This is why the National Strategy for Drugs for Rare Diseases (the Strategy) was announced by the previous Minister of Health on March 22 2023, and has since been pushed toward implementation. The announcement outlined measures in support of the Strategy with an investment of up to $1.5 billion over three years.The Government of Canada recognizes that access to DRD is essential to ensuring better health outcomes for Canadians affected by rare diseases. The largest portion of this overall investment – up to $1.4 billion – is earmarked for provinces and territories to support 3-year bilateral agreements that will improve access to new and emerging drugs, as well as support enhanced access to existing drugs, early diagnosis, and screening for rare diseases. We have been working with willing provinces and territories since March of 2023 to establish a small set of new and emerging DRD that would be cost-shared and covered in a consistent way across the country, as a critical next step to advance the development of these bilateral agreements.The rest of the Strategy funding is designed to both reinforce and magnify the impact of the provincial and territorial bilateral agreements and deliver improvements that will benefit all rare disease patients over the medium to long term. That is why the Government of Canada has provided $20M over three years to the Canadian Agency for Drugs and Technologies in Health (CADTH) and the Canadian Institute for Health Information (CIHI) to support the collection and use of real-world evidence to support decision-making, as well as patient registries. CADTH and CIHI are making progress on key activities to support decision-making across the pharmaceutical lifecycle.As well, the Strategy provides $32 million over five years to the Canadian Institutes of Health Research to advance a rare disease research agenda, developing better diagnostic tools and establishing a robust Canadian rare disease clinical trials network. Four funding opportunities were launched between June and August 2023, and funding is expected to start flowing for the largest project in January 2024, with remaining three projects beginning funding in April 2024. We know that this work will help more Canadians have access to the information they need regarding rare diseases as well as effective treatment for these illnesses.The input and participation of patient groups such as the Canadian Organization for Rare Disorders (CORD) and the Regroupement québécois des maladies orphelines (RQMO) was invaluable throughout the engagement process during the development phase of the Strategy. To continue this important dialogue with rare disease patients, those delivering care, and those seeking to improve care, an Implementation Advisory Group (IAG) was launched on October 26, 2023. One of the IAG co-Chairs this year is the former (founding) President of the RRQMO, and CORD is also a member. The IAG will provide patient-centered advice to Health Canada and other health system partners on the implementation of the Strategy and be a forum to exchange information and best practices on DRD. Provincial and territorial representatives and other organizations are also present as observers during meetings of the IAG, giving them an opportunity to hear directly from the rare disease community. Canadians can access information regarding the IAG on Health Canada’s website.Making significant changes in the complex pharmaceuticals management system takes time. We are currently in the first stage of implementation. Over the longer term, lessons learned from this initial phase will inform future phases of the Strategy that will deliver the ongoing funding identified in Budget 2019 to help Canadians with rare diseases access the drugs they need.The Government of Canada will continue to work with provinces, territories, and key partners to deliver on these improvements so those living with rare diseases can have better health outcomes and access to cutting-edge treatment options.
National Strategy for Drugs for Rare DiseasesPharmacareRare and orphan diseases
44th Parliament223Government response tabledJanuary 31, 2022441-00058441-00058 (Health)RichardCanningsSouth Okanagan—West KootenayNDPBCDecember 13, 2021January 31, 2022December 3, 2021Petition to the Government of Canada We, the undersigned residents of the Province of British Columbia, draw the attention of the Government of Canada to the following: Whereas: The cost of prescription medications and necessary medical supplies in Canada is excessive and varies greatly between provinces and territories; The cost of prescription medications and medical supplies are continuing to rise significantly every year;Many Canadians cannot afford to purchase their prescription medications and/or medical supplies or have to choose between purchasing prescription medications and medical supplies or providing for food and shelter. Therefore, your petitioners request the Government of Canada to develop a comprehensive pan-Canada single payer and universal Pharmacare program that ensures that all Canadians can access medically prescribed and necessary medications and supplies regardless of their ability to pay.
Response by the Minister of HealthSigned by (Minister or Parliamentary Secretary): Adam van KoeverdenNo Canadian should have to choose between paying for prescription drugs and putting food on the table. Unfortunately, many are still forced to make this impossible decision. That is why our government continues to work with provinces, territories, and stakeholders to ensure that Canadians have better access to the drugs they need.The Minister of Health's recent mandate letter from the Prime Minister reiterated the Government of Canada’s commitment to continue engaging with willing provinces and territories towards national universal pharmacare, while proceeding with a national strategy for drugs for rare diseases and advancing the establishment of the Canadian Drug Agency.To that end, on August 11, 2021, the Government of Canada announced the signing of the first agreement with the Government of Prince Edward Island (PEI) to accelerate the implementation of national universal pharmacare. Through this agreement, PEI will receive $35 million over four years in federal funding, to add new drugs to its list of covered drugs, and lower out of pockets costs for drugs covered under existing public plans for Island residents. The Government of Canada will use early lessons from PEI’s efforts to inform its ongoing work to advance national universal pharmacare.This agreement will also build on the foundational steps that are already in progress, including establishing a national strategy for drugs for rare diseases, a Canadian Drug Agency (CDA), and a national formulary.Budget 2019 proposed to invest up to $1 billion over two years, starting in 2022-2023, with up to $500 million per year ongoing, to help Canadians with rare diseases access the drugs they need. We recognize that for many Canadians who require prescription drugs to treat rare diseases, the cost of these medications can be astronomically high.To support the development of a national strategy for drugs for rare diseases, a public and stakeholder engagement process was launched in early 2021 and concluded on March 26th, 2021. A What We Heard report summarizing key themes and feedback that emerged during the public and stakeholder engagement has been published on the engagement webpage. We anticipate that there will be further opportunities to provide input on a comprehensive model for the national strategy.Launched in 2021, the Canadian Drug Agency Transition Office (CDATO) is overseeing the creation of the Canadian Drug Agency based on engagement with provinces, territories, and stakeholders. The Transition Office is providing dedicated capacity and leadership to develop a plan to establish the CDA in order to improve pharmaceutical system coordination and bolster related functions. Budget 2019 provided Health Canada with $35 million over four years, starting in 2019–20, to establish the CDATO.Work is also underway with partners to develop a national formulary. A national formulary would provide a comprehensive, evidence-based list of prescribed drugs and related products to support consistent patient access to treatments across the country. In July 2021, an arms-length organization, the Canadian Agency for Drugs and Technologies in Health (CADTH), established a multidisciplinary national panel to develop a draft formulary framework for consultation this winter. More information is available on the CADTH website.
Health care systemPharmacarePharmaceuticals