Lelainia Lloyd, an advocate for people living with a rare condition called neuromyelitis optica spectrum disorder (NMOSD), wrote a personal letter to all the ministers of health (federal, provincial and territorial) across Canada last year urging them to cover a lifesaving medication for her condition.
She did not receive a single response.
Lelainia’s experience is not unique. From coast to coast to coast, patients like her struggle to have their voices heard in shaping pharmaceutical policy. Patient organizations can provide input to reimbursement reviews at Canada’s Drug Agency (CDA), but they often don’t have the same opportunities to work across the pharmaceutical system.
When recommendations are made, there is a lack of transparency as to how they are used in decision-making processes. And though this input process has been available for more than a decade, it has not evolved sufficiently to include the voices of patients external to these agencies. Some initial steps, such as the appointment of a Patient Advisor in Health Canada’s Canadian Drug Agency Transition Office, have been taken, but progress related to patient voices and perspectives has been slow and fragmented. For example, while a group of patient leaders have created a publicly available report that describes future considerations and features for system-wide patient engagement, it is unclear what actions – if any – have been taken.
While federal health priorities focus on areas such as pharmaceutical use, data infrastructure and connected care, the central priority – patients’ experiences and needs – remains neglected.
Fragmented system, fragmented engagement
Patient organizations – often small grassroots organizations run by volunteers or minimally paid paid living with the health condition or disease – try their best to share patient perspectives across different organizations in the pharmaceutical system, like Health Canada, pharmaceutical companies, the Patented Medicine Prices Review Board, the pan-Canadian Pharmaceutical Alliance (pCPA) and provincial and territorial ministries of health, repeating the same views across a seemingly uncoordinated system. Often, patient input must be tailored to unique provincial and territorial legislation and priorities.
Despite these challenges, patient organizations receive limited support from the agencies that assume they have the infrastructure and resources to do this. The situation is far worse for people like Lelainia, who fit in their advocacy despite the effects of their debilitating illnesses, medical gaslighting, loss of employment, reduced quality of life and other impacts living with conditions/diseases bring. Marginalized communities – voices and perspectives that many agencies claim are of vital importance – may not wish to engage at all as repetitive processes mean they have to relive traumatic health-care interactions.
The need for a national patient organization
Why is no one sounding the alarm about the lack of systematic and meaningful patient engagement across the pharmaceutical system – except patients like us? No one patient organization can gather the capacity and resources to convene different patient communities together. A 2023 CDA report about living with Type 2 diabetes mellitus suggests that “voices from equity-deserving groups in Canada were missing or underrepresented” in its review. However, patient organizations lack the capacity to report on the experiences of these communities.
Funding is scarce, yet these same patient groups are often criticized for taking funding from the pharmaceutical industry, despite the fact that no resources are offered by decision-makers. These are significant problems and are pervasive across the pharmaceutical system, like the lack of:
- respect for the foundational principles of engagement: this includes not sharing power with patient communities in decision-making. It often does not include “closing the loop,” which is being transparent about how input has shaped or influenced policy.
- inclusive processes: patient engagement processes often overlook marginalized communities and those with limited resources to participate. They assume everyone can participate based on processes laid out by various agencies that are confined to a corporate mindset where making accommodations often are done only on request.
To address these systemic issues, Canada urgently needs a national patient-led, health-condition agnostic organization, modelled after successful initiatives like the European Patients Forum. This would provide a unified voice for patients and support the inclusion of patient perspectives across the pharmaceutical system. Creating this organization must be developed by the patient community using a collaborative, co-production process involving all interest holders. We make all sorts of investments in health care, but have we ever invested directly in elevating the voice of patients across a publicly funded system?
Meaningful and systematic patient engagement needs to have its own work stream and be a priority to get the attention it deserves. We are at an unprecedented time in pharmaceutical policy with the introduction of pharmacare and connected care legislation and the drugs for rare disease strategy. It is time for policymakers, health-care providers and pharmaceutical companies to commit to building a system where patient voices aren’t just heard, but actively shape the policy decisions that are more responsive to the needs of patients like Lelainia.
