Canada is on the verge of a new era in access to affordable prescription drugs. The federal government’s long-awaited pharmacare bill promises to lay the foundation for a national, universal pharmacare plan.
It could be a game changer for the one in five Canadians who struggle to afford the cost of prescription drugs. The federal government and the NDP deserve praise for developing a framework for the most ground-breaking health policy initiative in decades.
Yet, an essential element for success is missing from the legislation — input from patients who rely on prescription medications to treat their illness or disease. Their experience is vital in ensuring that pharmacare makes prescription drugs more affordable while not limiting access to essential medicines.
The federal government must avoid a mistake that governments too often make when implementing health policy and must directly involve patients in building pharmacare.
Governments often tout the importance of patient-centred care in decision making, only to leave patients out of the loop when it comes to developing policies that affect them. This cannot happen with pharmacare. The stakes are too high.
Close to 20 per cent of Canadians have inadequate or no drug coverage at all, forcing some to skip or cut doses of medicine — leading to potentially catastrophic outcomes — or forgo other necessities, such as food or heat, to be able to afford those medicines.
So, how can the federal government directly engage patients in developing pharmacare?
First, it must include the patient voice on the expert committee that will make recommendations on operating and financing pharmacare. The legislation requires the government to set up the committee within 30 days after the bill passes.
However, the legislation makes no reference to patient representatives being among those experts. This is a mistake. Who knows better than patients – especially those with no or insufficient drug insurance — where the real gaps are in current public drug plans and how to fill them?
Second, the government must give patients a seat at the table when it comes to determining which prescription drugs to cover.
The government’s commitment to provide first-dollar coverage for contraceptives and diabetes drugs and devices through provincial agreements is a good first start, but the list cannot end there.
Currently, it is up to each province to decide which prescription drugs to cover under their public health plan and under what conditions — including deductibles and co-payments. This results in unequal and inequitable coverage for and access to timely prescription drugs.
Drugs not covered publicly are only available to those fortunate enough to have a private drug plan covering them. Otherwise, people must pay for drugs themselves out of pocket. This can be unaffordable for many, especially those in marginalized communities.
The federal government must work with the provinces and consult with patients to expand the list of pharmacare-covered drugs to include prescribed treatments for life-threatening illnesses including cancer.
Governments must also include patients in discussions about how innovative drugs fit into pharmacare. Research advances have led to an explosion of new treatments in recent years, particularly for cancer.
These innovations can help patients live longer with a better quality of life. Yet, many innovative drugs are not covered under provincial public health plans and are costly out of pocket expenses, limiting access for those who need them. Patients’ insights can give governments a more comprehensive picture when determining how these treatments fit into pharmacare.
Third, the government must give patients a voice in the recently created Canadian Drug Agency. The legislation provides details on the agency’s role — including in the areas of developing a list of essential prescription drugs, creating a national prescription drug purchasing strategy and developing recommendations for doctors and patients about the appropriate use of drugs — yet it is silent on patient involvement.
Patients should be part of decision making not only about which essential medicines to cover, but also around an issue as important as the appropriate use of prescription drugs and related products. Patients’ lived experience with medications is an invaluable asset in making evidence-informed decisions about their care.
Pharmacare is the most innovative and important health policy legislation in decades. To get it right, the federal government must directly engage with patients. Their expertise is crucial to pharmacare’s success.
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