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 and 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.

Medicine has lost its way and no one is looking for the root cause of disease. Shareholder preferences control medicine and shareholders are not interested in cures, new antibiotics or vaccines. The paradigm of modern medicine is to palliate with treatments that provide life-time annuities to the pharmaceutical industry. Many invisible diseases such as ME/CFS, Lyme and fibromyalgia lack objective signs such as an accurate test, patients are being disbelieved and disrespected and we are all being gaslit. Physicians focus their attention on disease that kill outright and not on those that are profoundly disabling. Long-COVID has shaken many physicians out of their comfort zone with so many doctors and nurses becoming ill.
As stakeholders we want to be included in the decision-making for not to do so is unethical. For research and science to become evidence, it requires transparent debate with patient stakeholders. There is no more important stakeholder in health care than the sick patient and their experts. No such debate has been allowed in Canada.
Tokenism as practiced by PHAC undermines the legitimacy and effectiveness of patient engagement in the process as it fails to respect and utilize the valuable insights that patients can provide based on their living or lived experiences.
Patients and patient experts do not accept that the scientific questions have all been answered and can now be simply accepted as being absolute truths. All of us need to understand that science is rarely settled and acknowledge that science is always evolving.
For research and science to become evidence, it requires transparent debate with patient stakeholders. There is no more important stakeholder in health care than the sick patient and their experts. No such debate has been allowed in Canada.
Medicine is based on science except where it becomes inconvenient. Medical doctors are users of science. Medicine is self-regulating but that only works if everyone is behaving altruistically.
Well said Rob and mentioning of gaslighting contributing to the problem, you and others may find this recent commentary in a medical journal on this topic of interest:
“Firstly, there are complex lesser known or poorly established clinical entities that may lead physicians to wrongly attribute legitimate symptoms and complaints to nonmedical or “functional” causes due to a lack of common consensus on disease pathophysiology and mechanisms. Classically, conditions such as systemic lupus erythematosus,8 “long COVID syndrome,”6 or chronic Lyme disease7 often present with nonspecific physical symptoms and are not well understood by physicians, leading to many patients ending up on a diagnostic odyssey and having their complaints repeatedly dismissed or misdiagnosed in clinical settings. In reality, “functional” neurological symptoms or even florid psychiatric manifestations can often be caused by an underlying organic etiology, but get misdiagnosed as primary mental health conditions due to physician ignorance and inadequate investigative efforts.9” …
Source:Isaac KS Ng. Medical gaslighting: a new colloquialism. American Journal of Medicine. 2024. Volume 137, Issue 10:920-922
https://www.amjmed.com/article/S0002-9343(24)00396-6/fulltext
PHAC will listen but not act. For PHAC, the term ‘stakeholder’ includes their traditional partners in government and industry and excludes patients and their expert advisors. PHAC specializes in low-hanging fruit -the things they can count.
One major problem, as this author mentions in a letter to the editor, in the journal American Family Physician, is the misuse of evidence-based medicine. Government funded healthcare plans love EBM to misuse this medical tool to simply reduce costs, as one goal. It’s very sad and is costing people such as Lelainia a quality of life that they so much deserve.
“Medicine has had many firmly held beliefs, traditions, and treatments that were accepted as absolute fact and routinely prescribed only to be later disproved and abandoned. Physicians constantly change their treatments in response to new information. Nothing in the past compares with the current high praise of evidence-based medicine.
The evidence-based approach is sound; however, the way it is applied is flawed, and it can also be misused. Few of the problems physicians deal with every day have had large, prospective, double-blind, placebo-controlled studies to provide best practices. For medical problems that have been studied, the study population may be different from the patient being examined. Study patients typically have only one defined problem, with no confounding diseases or multiple medication use. With a few exceptions, the only form of therapy that can satisfy the evidence-based medicine study criteria rigidly is drug therapy with a new patentable drug, for which the pharmaceutical companies are the major source of research funds.
If these studies show either a negative effect or no effect, then that is definitive proof that therapy should not be routinely performed. Even if there is a positive result, the studies do not discuss what treatment is most effective. Better approaches, especially nonpharmacologic, may exist. With large enough study populations, clinically useless, trivial effects can achieve statistical significance. Continuing to use treatments with minimal clinical effectiveness, but statistically significant results, raises medical costs. Simply because some medical treatments do not have studies does not mean a treatment is ineffective.” …
Source: James H Matthews, M.D. . Misuse of the Evidence-Based Medicine Approach. American Family Physician. 2003. 67(5) (online)
How can this be when in any other industry market research takes place and consumers are consulted. Government needs to take action and sooner rather than later.