The Best Medicines Coalition (BMC), representing 30 patient organizations and millions of Canadian patients, is pleased to present its submission on Bill C-64, An Act Respecting Pharmacare. This submission, informed by our member organizations and thorough review of the bill, reflects a consensus on key issues.
This submission to the House of Commons Standing Committee on Health emphasizes the importance of equitable, timely access to medications for all patients in Canada, advocating for comprehensive care.
To put patients first, the BMC recommends the following eight amendments to Bill C-64:
1. Require the Minister of Health to develop and propose whole-of-government strategies, with participation from key health agencies, to address regulatory and formulary review delays, inequities, and shortages.
In addition to the requirements contained in Bill C-64, An Act Respecting Pharmacare, for the Minister of Health to request strategies on bulk purchasing and a national formulary, that the Minister is required to review and propose specific whole-of-government strategies that Health Canada can undertake to address delays, inequities, shortages and inadequacies in regulatory, health technology and formulary listing reviews and related processes and their outcomes. The Minister should be required to request participation in the development and implementation of these strategies from the Canadian Drug Agency/Canadian Agency for Drugs and Technologies in Health, l’Institut national d’excellence en santé et en services sociaux (INESSS), the Patented Medicine Prices Review Board and the pan-Canadian Pharmaceutical Alliance.
2. Table an annual report to Parliament on the impact of pharmacare on patient access and equity.
That the Minister of Health is required to table an annual report to Parliament that details how patients’ access, equity and comprehensive timely care has been impacted for both contraceptive and diabetes medications, as well as all other categories added later, and on the implementation of the National Strategy for Drugs for Rare Diseases.
3. Provide the rationale for the selection of an advisory council, publicly release its terms of reference, and annually report its recommendations and the government’s responses.
That the Minister of Health, in addition to appointing an advisory council: must (1) detail the rationale for how the advisory council is selected, (2) publicly release the council’s terms of reference and (3) be required to produce in annual reports any recommendations made by the advisory council, the Government’s response to each recommendation and the rationale for not moving forward with any recommendations the advisory council made to the Minister.
4. Appoint a fully empowered Chief Patient Officer with lived healthcare experience to ensure patient perspectives drive reforms, supported by an advisory committee.
That the Minister of Health is required to appoint a Chief Patient Officer established within a framework that empowers the Chief Patient Officer to fully exercise authority to ensure that patient expertise, values, voices and outcomes are recognized and drive reform, decision making and ongoing work. As an individual with lived experience with the healthcare system and fully vetted to ensure credibility, including regarding possible biases and conflicts of interests, this officer would be required to work with relevant agencies with which Health Canada is directly engaged regarding regulatory review, health technology assessment and formulary listings of drugs including review, approval, evaluation and negotiation. To ensure effectiveness, the Chief Patient Officer would be fully resourced and supported, with access to an advisory committee with broad and diverse patient representation.
5. Ensure any pharmacare strategy or national formulary is fully funded and flexible, eliminating out-of-pocket costs for patients.
That the Minister of Health is required to ensure that any pharmacare strategy or any new national formulary must be fully funded, comprehensive and flexible to ensure that there are no longer any out-of-pocket payments for pharmaceuticals by individual patients.
6. Establish a transparent, exceptional patient pathway for healthcare professionals to access independent committee approval for off-formulary treatments.
That the Minister of Health is required to establish an exceptional patient pathway which is clearly understood and transparent in terms of process and decision making criteria. Such an exceptional patient pathway would provide a prescribing health care professional the ability, without undue administrative burden, to access an independent, scientific committee for approval for a specific patient to have access to a drug or related treatment which is not on a formulary or for an indication not yet approved by Health Canada. In addition, the Minister of Health shall report to Parliament annually on the work and outcomes of the exceptional patient pathway.
7. Create a Patient Ombudsman with the power to advise Parliament on violations of this Act or the Canada Health Act, and address patient access barriers to approved medications.
That the legislation includes a provision for the creation of a Patient Ombudsman that reports to the Parliament of Canada to advise Parliament on any issues in contravention of this Act or the Canada Health Act, and any failure for the Government to uphold the Canada Health Act, with defined intervention and enforcement powers. The Patient Ombudsman would also assess barriers and concerns as expressed by patients in relation to access to medications approved by Health Canada as well as through an exceptional patient pathway.
8. The Canadian Drug Agency must be established in legislation rather than at the direction of the Minister of Health, subject to Parliamentary oversight.
The Canadian Drug Agency must be established in legislation rather than at the direction of the Minister of Health, subject to Parliamentary oversight, the Access to Information Act, Auditor General scrutiny and interventions by a Patient Ombudsman.
Read submission in full: Submission to the Standing Committee on Health: Bill C-64, An Act Respecting Pharmacare (April 15, 2024) (Français)