Handicapped access: how people with disabilities engage with and are affected by the governance mechanisms of prescription drugs in Canada

Canada’s prescription drug system is beginning to undergo significant changes. In October 2024, Bill C-64, “working towards the implementation of national universal pharmacare,” received royal assent. With its new Pharmacare Act, the Canadian government guides efforts in reshaping the existing system, composed of numerous provincial, territorial, and federal public plans, as well as private plans. This patchwork of prescription drug plans prevents many people from having adequate coverage, with particularly detrimental impacts on people with disabilities. A national plan is an opportunity to guarantee greater access to disabled people and ensure they occupy a central decision-making role. To achieve these goals, it is essential to understand how the experiences of disabled people are currently reflected in the mechanisms for prescription drug governance within Canada’s constitutional and federalist structure.The primary objective of this thesis is twofold: to establish (A) the extent to which people with disabilities shape existing mechanisms through their participation and knowledge, and (B) how these same mechanisms shape disabled people’s access to medication, focusing on Quebec, Ontario and pan-Canadian mechanisms. Adopting a theoretical framework based on the social-relational model of disability and crip theory, and studying case law, legislation, and secondary materials on prescription drugs, disability, the Charter and federalism, the thesis analyzes three key elements of a drug plan: the formulary and related approval process, the eligibility criteria, and the cost-sharing provisions. The analysis also assesses the impact of the private sector.The analysis reveals that the participation of disabled people in mechanisms of drug governance is mainly performative. While relevant agencies related to formularies acknowledge the importance of diversity and stakeholders’ input, they do not address the real barriers to disabled people’s full participation. Moreover, pharmaceutical companies may use the consultation of patient groups in governmental agencies and “charitable initiatives” to advance their agendas.The mechanisms of the three components of prescription drug plans also remain embedded in a medical and charitable model of disability. The fragmented eligibility criteria in Ontario perpetuate the dichotomy between abled and disabled people, and the cost-sharing provisions in both provinces carve out limited exceptions that merely “tolerate” the disabled experience. The private insurance sector—inaccessible for many people with disabilities—influences provinces and may curb public initiatives moving away from this paradigm. The existing mechanisms create asymmetry in access to drugs that limits disabled people’s mobility and autonomy and may lead to adverse health effects. They Charter challenges do not—under the current interpretation of the rights to equality, life, security and liberty—remedy these inequalities.As a secondary objective, this thesis examines the impact of the division of powers on drug plans. The exercise of provincial jurisdiction can lead to innovation. Improved access to medications is not necessarily linked to federal involvement. Nonetheless, national, universal pharmacare could allow greater access to drugs for disabled people. The new mechanisms that will result from the Pharmacare Act as well as the existing ones must prioritize the meaningful participation of disabled people. Significant weight must be given to their lived experiences to address the systemic and structural inequalities embedded in prescription drug governance

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