Not Just Arthritis: A Joint Effort to Change Arthritis Care in Canada

Xtalks spoke with Arthritis Society Canada’s CEO, Trish Barbato, and Chief Scientific Officer, Sian Bevan, about why arthritis care in Canada needs a shift.

Arthritis is often talked about casually, but Arthritis Society Canada’s latest research asks readers to look at the disease differently.

The organization’s 2026 State of Arthritis in Canada Report Card suggests that arthritis is a much larger health-system issue than many people realize. Arthritis affects more people in Canada than diabetes, heart disease, cancer, stroke and dementia combined. 

Arthritis affects about one in five people in Canada. Half the people with arthritis in Canada are under 65, including 25,000 children and youth. 

Arthritis-specific research represented only 1.2% of funding awarded by the Canadian Institutes of Health Research (CIHR). While CIHR’s overall funding rose 29% from 2017 to 2025, arthritis-specific research investment declined nearly 24%.

In response, Arthritis Society Canada and 21 other organizations launched Arthritis Action Now: The Plan to End Arthritis in Canada, which lays out coordinated priorities for policy change, research and innovation, and targeted initiatives such as precision medicine, youth injury prevention, equity-focused care and arthritis-aware workplaces.

To further understand what is at stake, Xtalks spoke with two of the top voices deeply engaged in changing how arthritis is understood, studied and treated: Trish Barbato, President and CEO, and Sian Bevan, Chief Science Officer at Arthritis Society Canada.

Trish intuitively laid out report card findings, gaps in care and the national collaboration behind Arthritis Action Now and Sian offered a thoughtful, comprehensive look at advances in arthritis research, treatment and care.

Building a Plan Around Patient Voice

For Trish, one of the most important things about Arthritis Action Now is how it was created. She described the plan as innovative and empowering, not only for people living with arthritis, but also for the wider arthritis ecosystem involved in shaping it.

“We’ve actually been working on it for three years. If you can believe it, about 21 organizations, we’ve interacted with over a hundred thousand times with people with arthritis to understand the things that were important to them. So the plan is really rooted in evidence, but the patient voice is loud and strong throughout the plan.”

The plan’s three main areas include public policy, research and innovation and a third pillar focused on special populations. Trish pointed to women with arthritis, underserved communities and youth sports injury prevention as examples of areas that need more focused attention.

She also emphasized that the research priorities were shaped by the researchers doing arthritis research in Canada, with Sian helping coordinate that work.

When asked what progress could look like one year from now, Trish said, “What excites me the most, I think, is what people want.” For autoimmune forms of arthritis, she shared, people want cures, remission and relief from fatigue, pain and joint swelling. 

“And the same is true for osteoarthritis,” she said. “We want a breakthrough in osteoarthritis. We don’t have any drug that can slow the progression of the disease once you have it. And we know people have it at much earlier ages than people think. So we’re really looking forward to the scientific breakthroughs that are going to make a difference.”

Arthritis Is Not Just “An Older Person’s Disease”

Trish pushed back on the main myths about arthritis. “I think it’s the most misunderstood disease,” began Trish. “People think it’s an older person’s disease. It is not. They think it’s wear and tear and inevitable. It is not. The disease affects people of all ages.”

In osteoarthritis, she revealed, a third of people are diagnosed before age 45, and the true number may be higher. Half the number of people with arthritis are under 65. Arthritis can also affect children and even babies with juvenile idiopathic arthritis.

“It’s a very complex disease. There are over a hundred different types. Many of those are rare diseases, very hard to diagnose and difficult to treat. So it’s a complex disease and people don’t understand that. It’s the leading cause of disability in the country.”

That disability burden, Trish added, is also a workforce and economic issue. Better care can help people stay employed, remain present at work and avoid short-term or long-term disability.

Understanding Arthritis Before It Becomes Lifelong

Sian picked up that same thread before turning to research. “I think we are tired of people saying that it’s just arthritis because there’s nothing just about the disease, so people really need to appreciate the importance,” she noted.

Looking at arthritis research today, Sian said there is significant potential globally and in Canada, where arthritis science is already strong but needs continued support to help drive future breakthroughs.

A major challenge is that osteoarthritis still lacks a treatment that changes the disease itself.

“What we’re doing right now is we are treating symptoms, but we don’t have anything that is actually treating the root cause of the disease.”

For a long time, osteoarthritis was viewed as “pretty benign.” Research is now showing that the disease involves complex biology across joints, tissues, cartilage and inflammation. A better understanding of biology could help researchers identify new treatment targets.

As Sian put it, researchers “cannot treat what they don’t understand.”

Prevention of the disease is the ultimate goal. Researchers are learning more about modifiable risk factors and what makes some people more susceptible to arthritis. If those people can be identified earlier, clinicians may be able to monitor them, treat them sooner and reduce the disease’s long-term impact.

Sian shared that understanding a person’s genetic makeup could also help explain why they are predisposed to certain forms of arthritis and why some treatments work for some people but not others.

Arthritis is not one disease. “There are many different types of arthritis, so understanding how your arthritis is different from somebody else’s arthritis allows us to customize those treatments to make sure that the people are getting the right care at the right time,” she emphasized.

AI was another area Sian highlighted, particularly for its potential to help researchers and clinicians make better use of health data, predict disease risk and better understand which treatments patients may respond to.

As one example, she pointed to an Arthritis Society Canada-supported project with the University of Alberta that uses AI-enabled ultrasound to detect hip dysplasia early in infants. If untreated, hip dysplasia can lead to premature osteoarthritis later in life, along with long-term pain, early surgeries and economic and social impacts.

“So the potential to actually detect hip dysplasia early, treat it earlier and prevent the disease altogether is huge.”

The project is aimed especially at rural and remote communities, where AI-enabled ultrasound could help identify the condition earlier in children.

Building the Data Infrastructure for Better Care 

On the question of data and access to care, Sian said the two are difficult to separate. People are waiting too long for care, and part of the issue is that patients are not always directed to the right care from the start.

“If we can use health data to understand what kind of treatments people should be receiving or what kind of assessments, what kind of doctors they should be seeing, in other words, helping us triage those cases, that’s a big opportunity for us to make the system more efficient.”

Canada has strong initiatives across the country, including clinical cohorts, clinical trials and datasets, Sian said. The opportunity is to bring them together, so researchers and health systems can learn from larger numbers of patients and better understand which drugs work for which people, what trends are emerging and what may be missed when data are viewed in smaller, separate pieces.

The same idea applies to care models. Healthcare is complicated, and people often see multiple specialists, making better coordination another key opportunity.

Applying Local Lessons to a Global Footprint

Could global health systems take a page out of Canada’s arthritis research efforts? Sian brought forth a few points, starting with the public health data systems, clinician-researcher collaboration and patient engagement in research and clinical work.

That includes involving patients in deciding what questions should be asked, what outcomes matter and how patient-reported outcomes can be built into data systems to influence future care.

Trish added that the unity behind Arthritis Action Now is one of Canada’s strengths. Speaking from the World Osteoarthritis Conference, she described an early-morning meeting with clinicians and researchers focused on how to start implementing the plan.

“So we have a very coalesced group. We have a plan that has united everyone against an aligned and agreed-upon finish line. So we are all headed in the same direction, and that is really quite unprecedented.”

She said colleagues in Australia and the UK do not have the same unified approach across the research, clinician and patient advocacy communities. 

“We are advocating to the government as one voice, as one ecosystem for people living with arthritis. And that makes it so much more powerful,” Trish added.

As for immediate next steps, one of the first priorities under the action plan will be bringing together people responsible for biobanks and registries across the country. The aim is to discuss what it would take to standardize, share data and build a stronger platform for clinical trials, shared research, faster implementation and less administration.

They may also explore how they can plug AI into that work.

Trish said patient advocacy groups are working to align on specific areas where each province could make a difference for people living with arthritis.

Some of the early work includes standard nomenclature, shared naming conventions and minimum datasets for clinical trials, biobanks and other systems.

“There’s some unifying work that we can do across the board to make sure that these systems all come together in a much more cohesive way as a start, which we think is very feasible, very doable and something that we know people are excited to do because there’s great potential in it,” concluded Sian.