Mr. Chair and health committee members, thank you for the invitation to be a witness at these historic hearings regarding pharmacare for Canadians.
Our Best Medicines Coalition represents 30 patient organizations, from Parkinson's, arthritis, hemophilia and blindness to cancers and other complicated and rare diseases. Together, we represent the interests of millions of patients and their caregivers.
I'm happy to have moral support from JK Harris of the Canadian Breast Cancer Network and one of our member organizations, who's here today. Thank you very much, JK, for being here.
BMC's aims are simple.
Number one is to fix the postal code lottery by ensuring all patients have access to the medically necessary medicines they need and ensure patients are meaningful participants in the development and oversight of pharmacare policies.
We at BMC recognize that Canada is the only developed nation with a universal health insurance system that does not include universal coverage for prescription drugs used outside of hospitals. This gap results in disparities within and among provinces, territories and indigenous jurisdictions where individual programs provide varying levels of drug coverage. This is what we call the postal code lottery.
As a result, one in 10 Canadians reportedly do not take their prescribed medications due to out-of-pocket costs. This highlights significant inequities in access to necessary medications. Up to 7.5 million citizens—one in five Canadians—don't have prescription drug insurance, have inadequate insurance to cover their medication needs or do not enrol when eligible.
Cost and coverage aren't the only problems.
Here's the bad news for anyone in the Ottawa bubble: Sixty-four per cent of Canadians believe that the federal government is not transparent enough about its health care policies. This lack of transparency erodes public trust and hinders the effective implementation and uptake of health initiatives.
Then there's data. Inconsistent reporting and lack of transparency in health data hinder the measurement of performance and outcomes, decrease opportunities for identifying gaps in data and services, and impede the capacity of the health system to integrate patient voices.
There's also a lack of representation of patient voices within governments and government-funded organizations in generating and implementing drug policy. One result is a health care system that is less responsive to patient needs. This can potentially compromise the quality of care and lead to a disconnect between patient expectations and the care provided.
In addition, existing complicated patient pathways cause significant stress and anxiety for patients and their caregivers, potentially exacerbating health conditions and leading to worse health outcomes. Thirty per cent of Canadians experience difficulties in navigating the existing health care system, leading to significant delays in receiving necessary medical attention. Changes in pharmacare must not create new barriers to innovations to address the unmet needs of patients.
The involvement of patients should be done with more than an expedited and truncated consultation on such a foundational expansion of the social safety net of Canadians. Patients should be built into the programs and the structure, not just with an occasional consultation. For example, patients—and that's plural—should be on the board of the Canadian drug agency.
We have eight friendly recommendations for amendments to the bill. I'm right at the clock, so if somebody could do us a courtesy, we'd love to have those eight submitted. They're in our written submission.
I want to highlight two key points of patient interests.
First, create a chief patient officer at Health Canada. Second, create a patient ombudsman who reports directly to Parliament. Only MPs and senators can make this ombudsman role come to life.
The chief patient officer at Health Canada would work within the organization. It should be someone with lived experience whose role gives them authority to ensure that the patient experience and expertise is recognized and used to drive reform and improve patient outcomes. This person should further be supported by an advisory committee with diverse patient representation, which this legislation doesn't quite contemplate yet.
The patient ombudsman would work outside the organization and report independently to Parliament. Besides reporting on any failures to uphold the act and regulations, this ombudsman would also assess barriers and concerns as expressed by patients when it comes to accessing medications and would recommend changes.
These amendments to Bill C-64 would enable and reinforce transparency and accountability. It's not enough for any government to say that they want universal access to medications. Bill C-64 should speak to the role patients must take in improving equitable access to medications.
With your questions, I'd be pleased to go into detail on all eight of the proposed amendments we suggest to better support patients.
The Best Medicines Coalition calls on Parliament to do its best for Canada's patients. On behalf of all patients, nothing about us without us.
Thank you.