Canada is failing patients by not ensuring they have timely access to safe and effective innovative treatments including through participating in clinical trials, says a lawyer and health advocate.

The Canada Health Act has five principles: public administration, comprehensiveness, universality, portability and accessibility.

“I can tell you from the perspective of a person with lived experience that we don't feel that this contract is being honoured, particularly the principles of accessibility, universality and portability,” Louise Binder (photo at right), a health policy consultant at Save Your Skin Foundation, said at Research Money’s 25^th annual conference in Ottawa.

The conference, “Acting on Health: Reimagining Canada’s Promise,” started with a patient’s perspective with Binder’s talk.

“People using the health care system have no illusion about it. They know it's not meeting their needs,” she said.

Although people often don’t know the main reason for this, Binder argued that “it is because we have a federated government structure that doesn't necessarily serve as well in health care.”

For example, the Canada Health Act insures only health care services and medications provided in hospitals and by doctors, she noted.

This means people who need novel drugs and treatments that are often lifesaving either have to pay for them by private insurance or out of pocket.

This limitation in the Canada Health Act led to each province and territory independently setting up its own public drug reimbursement plan, Binder said. “These plans vary widely province to province, which is why we have what is often called a ‘patchwork world’ of drug access across the country.”

Binder has been involved in informing the development of health policy and systemic treatment access practices from a patient perspective for 30 years. She started this work in the HIV community in the early 1990s after her own diagnosis and before effective treatments were available for HIV.

​She co-founded the Canadian Treatment Action Council in 1996, which successfully ensured access to treatments and quality care for people living with HIV by working with the federal and provincial governments and other relevant stakeholders to enhance drug review and approval systems, pricing policies and access to liver transplants for this community.  

About a decade ago, Binder began similar work in the cancer area with Save Your Skin Foundation, a national patient-led non-for-profit group.

Binder said when she was diagnosed with HIV in 1994, at age 43, she was sent home, given two years to live and told to put her affairs in order.

Instead, she joined AIDS activists in Canada and around the world to fight for research and access to treatments globally.

In 1996, the first combination antiretroviral therapies against HIV were being given to patients in the U.S. who “were really literally rising from their sick beds almost overnight and living normally,” Binder said.

Canadian patients, however, didn’t have access then to the new drugs, “and the main reason for this was a very slow Health Canada review process,” she noted. Health Canada told her there wasn’t enough long-term research on the safety and efficacy of the new combination drugs.

“All I could think was, ‘What are you talking about? If I don't get these drugs, I'm going to die. If I get them, I may live, and perhaps for a long time.’”

Binder and other activists fought to have Health Canada’s review system changed to cut in half the review time for life-saving and quality-of-life drugs. This led to what is now known as the “Notice of Compliance with Conditions,” which allows drug manufacturers to market promising new therapies for serious or life-threatening diseases before all clinical studies are fully completed.

She and her fellow activists also successfully advocated with companies to bring clinical trials using the HIV combination therapies to Canada.

“I was in one of those trials, and it saved my life by giving me access to these treatments before they were reimbursed in Canada,” Binder said.

“Cancer patients need access to clinical trials and a health system equipped with policies, procedures and processes that will allow patients to benefit from innovative cancer treatments and diagnostics,” she said.

Patients face multiple barriers in accessing innovative treatments

Binder pointed out that 42 percent of people living in Canada are expected to be diagnosed with cancer in their lifetimes, and 22 percent of those diagnosed are expected to die from cancer in 2026.

A 2020 study, by researchers at Queen’s University and King’s College London, published in the British Medical Journal, found that for every four weeks of delay in cancer treatment, patients have a six percent to 13 percent higher risk of dying – a risk that increases the longer treatment doesn’t begin.

“People with serious and life-threatening conditions have no time to wait for a drug to make its way through our lengthy approval and reimbursement systems to access the treatment,” Binder said.

“These access [to treatment] issues are not limited to cancer, but if we can fix these access issues for cancer in Canada, we can certainly apply those across various disease areas.”

Innovative treatments and diagnostics are often only available through clinical trials. Yet there are significant barriers to Canadians’ participation in clinical trials, including geography, money and policy, she said.

Clinical trials are typically done in large urban centres, which leaves out significant numbers of people in rural and remote areas, including Indigenous populations.

Even if someone in a remote community manages to get into a clinical trial, the chances are high they won’t remain in the trial until the end, she said. “They are away from their communities and all that that implies.”

Also, people in rural and remote communities have to pay out of their own pocket for the travel, accommodation, meals, childcare and lost time at work in order to participate in clinical trials.

The Canadian Cancer Society in a 2024 report found that costs for people with cancer and their caregivers totaled $7.5 billion in 2024. The average cancer patient faces nearly $33,000 in costs, including out-of-pocket expenses and lost income during treatment and recovery.

Binder noted that Save Your Skin Foundation has provided at least $600,000 in its 20-year history to support people for everything from direct cancer care costs to travel, accommodation and food, so they can participate in clinical trials of innovative treatments.

Budgets for clinical trials should include these sorts of costs for participants, she said.

Another barrier to treatment accessibility is that in oncology, it can take Health Canada up to 300 days to review a new drug for approval for sale. And it can take 500 days from Health Canada’s approval to being listed on a provincial’s list of pharmaceutical products and medical devices approved for use – but not necessary reimbursement – within that specific province’s health care system.

“This is 2.2 years on average from start [of the approval process] to having the first province cover the [costs of] the drug,” Binder said.

“Additionally, these outdated, inefficient systems may well discourage early launch of drugs into the Canadian market, which is bad for patients. So we need to remove the red tape from these systems,” she said.

In January this year, Ontario took the bold step of fast-tracking six new life-extending cancer treatments in a pilot project.

There needs to be a process to get drugs to people in the interim while these lengthy review processes take place, Binder said. She noted that this is done in other countries through risk-sharing agreements between governments and manufacturers.

Public health care principles of universality and portability aren’t being met

The Canada Health Act’s principles include universality. Canada has diverse populations in ethnicity, culture, age and many other demographics.

Yet enrollment in clinical trials in Canada doesn’t represent this diversity, nor does it reflect real-world populations, and the results aren’t generalizable, Binder said.

“Internationally, researchers have found that randomized controlled trials are not representative of age, sex, gender, race, ethnicity and disability in a number of disease groups,” she said.

Binder urged the co-creation of clinical trials, from design to implementation to knowledge translation, with people with lived experience.

A study by U.S. researchers who assessed the financial impact of patient engagement in clinical trials found that doing so saved several millions of dollars, depending on the stage at which patient engagement took place. The study found that with an investment of $100,000 in patient engagement, the net present value and the expected net present value can exceed the investment by 500 times, Binder said.

The Canada Health Act also promises portability, which means that people can move from province to province with a maximum of three months waiting period to obtain public health services coverage in the province they move to.

Yet people actually move from one province to another for treatment at their own expense because they can't get a particular treatment in their own province, Binder said.

“This seems ridiculous. There's a pan-Canadian process for negotiating the price of a drug, so why can't we have a pan-Canadian process that ensures equal access province to province based on best practices?” she said.

Portability also is severely hampered by a common myth that all health care providers a person sees has a complete copy of their health file, she added. “We have put patients at risk all along because this isn't true.”

One of the underlying problems is the lack of an interoperable data management system across the country and even within a single province. Systems don’t talk to each other, so they can't share data.

“Health care providers sharing our health information across institutions and borders is crucial. Anything less is unacceptable,” Binder said. “Ultimately, there should be one complete record of a patient's health information that follows the patient across this country.”

Patients and health care providers need this data to provide personalized advice and decision-making for optimal health outcomes for individuals, she said.

Researchers also need meaningful data to do good research, and health policy advisors and decision-makers need relevant data to inform public health policy and budgeting. 

Binder said the federal government is beginning to address the data portability challenge with Bill S-5, the Connected Care for Canadians Act. This legislation, which is currently undergoing the parliamentary review process, mandates that health information technology vendors adopt common interoperability standards and prohibits data blocking, thereby allowing secure patient and care provider access to health records nationwide.

In addition, Canada Health Infoway last month released a “Connected Care Trust Framework Blueprint” for a shared, national approach to enabling trusted health data exchange across Canada.

Canada must protect its IP and change how it manages risk

Binder’s co-panelist for the Research Money conference opening session was entrepreneur and independent Senator Colin Deacon (photo at right), from Nova Scotia, who praised Canada’s “incredible, world-class research engine.”

“But we've never built the transmission,” he noted. “We've never built the heart of that drivetrain that turns our great research inventions, innovations and opportunities into opportunities, jobs and wealth for Canadians.”

Canada has assumed that if the country keeps putting inputs into research, innovative commercial outputs will come out the other end, Deacon said.

“And it hasn't worked, it isn't working, and it won't work. So as a result, we've got a system where patients are getting less access to care, they're not getting access to the type of world-class care that can be available.”

The way the system is currently operated and delivered is what got the country into the health care challenges it’s facing, he said. “If we keep putting more money into the existing system, we won't get dramatically different results.”

Canadian universities have produced some of the best ideas that have solved health challenges globally, Deacon noted.

“But none of the opportunities, none of the jobs, none of the wealth that was created by those ideas have remained in Canada. Our entrepreneurs migrate, or the ideas migrate,” he added.
“We are the world's greatest global philanthropist of intellectual property. We give it away. We do not cherish and nurture and ensure that IP is generating opportunities, jobs and wealth in Canada.”

Deacon urged the federal government to apply its Major Projects Office approach to IP and other intangible assets in the health and life sciences sector. Doing so, he said, “can create endless opportunities for Canadians in terms of the delivery of care, but also in terms of the companies that we create, the next global giant in the health care space, that can be taking our ideas and selling them to the world.”

Canada also needs to be more adaptable, especially in a technology-driven world of rapid change, on how it defines and quantifies risks when it comes to making innovative health treatments and medical products available, Deacon said.

“Our risk management system is itself creating risks. We have to be willing and agile. We are not. We create systems and stick with them, come hell or high water,” he said.

Binder agreed, pointing out that people live with various types of risks all the time. “And my question is, ‘What risk is fit for purpose for the situation that we’re in?’ I don’t see that [being] really well articulated by policy makers.”
Deacon said some of Canada’s challenges with procuring new and innovative medical products are partly due to how those in charge of procurement have chosen to manage risk. More domain experts should be involved in the decision-making, he said.

The way risk is currently managed “is not achieving the ends we want. And the fact that we don’t support the commercialization of our own ideas is a massive risk that we’re seeing the results of in our economy,” he said.

Canada has too many systems that allow somebody along the chain to say “No” – without needing to defend that “No” with evidence – that stops progress, Deacon said. “That should not be allowed.”

Such a cultural mindset is putting at risk future generations, he said. “We’re having to make choices that are curtailing our ability to move out of the challenges we’re facing.”

Binder pointed out that Canadians were able to shift their mindset and aversion to risk, and move quickly during the COVID-19 pandemic to help develop and rapidly approve the new mRNA vaccines.

“So we can do it if we want to,” she said. “The question that I still can't answer is, ‘Why don't we want to see that kind of change?’ I don't understand it, except to say we're a country that seems to be so risk-averse and so really passive in the way we let governments manage things.”

Deacon said Canada – unlike other countries – doesn’t have to tools to objectively monitor outcomes of decisions made by policymakers and those in charge of health care systems.

“Our key performance indicators in government tend to be about how well we're managing the process we have,” he said.

“That will never tell us that actually we're managing that process really well, but it's a failing process in every way. We’ve got to get past that.”

Dr. Lakshmi Krishnan (photo at right), vice-president of life sciences at the National Research Council (lead partner for the Research Money conference), said: “Ultimately, health innovation is not only about developing new treatments. It’s also about ensuring that those treatments are affordable and accessible to our population.”

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