This piece was written by Linxi Mytkolli, Director of Patient Engagement at Diabetes Action Canada. Linxi brings deep expertise in patient partnership and knowledge mobilization, and her appointment as Canada’s Youth Delegate on Global Health is a meaningful opportunity to extend that work onto the international stage. We are proud to see her leadership helping bridge lived experience, research, and global policy dialogue.

Why youth consultation and lived experience belong in global health governance

Living with diabetes feels, to me, like a stereo that does not turn off.

The music is grief. Sometimes it is quiet, just a background hum. Sometimes it swells when stress rises. Sometimes it layers with joy or achievement. It changes tone, but it never fully stops.

That constancy has shaped how I understand health.

Diabetes is not an event. It is an environment. It is the ongoing recalibration of numbers, risk, emotion, and identity. It is calculating insulin under fluorescent lighting. It is waking up to alarms. It is building a life while the stereo keeps playing.

For a long time, global health felt far from that reality. The World Health Assembly. Multilateral negotiations. Diplomatic briefings. Acronyms and formal statements.

This year, those worlds meet.

I will serve as Canada’s Youth Delegate on Global Health.

When I received the news, I felt the weight of what this role carries. Because I know the stereo does not turn off for other young people either.

From Community to Committee Rooms

As Canada’s Youth Delegate, I serve as an Advisor within the Canadian Delegation to multilateral health meetings, including the World Health Assembly at the World Health Organization and the Directing Council of the Pan American Health Organization.

In practice, this means conducting youth consultations across Canada on key health priorities and bringing those perspectives forward to help inform how Canada engages internationally.

In parallel, I continue to serve as Director of Patient Engagement at Diabetes Action Canada.

These roles are not separate. They are extensions of one another.

At DAC, we have embedded patient partnership into the foundation of how research and policy engagement are designed. We work alongside patient partners and fellows across the country to co-design projects, mobilize knowledge, and ensure that research is shaped by the communities it aims to serve.

Through this delegate role, I am especially committed to opening consultation and co-design opportunities to our patient partner community and fellowship network. Not as a symbolic exercise, but as a natural continuation of the work we already do.

When Canada enters global health discussions, it should do so informed by the lived realities of the people most affected.

Why This Matters for Diabetes

For young people living with diabetes, the issues debated in global health forums are not abstract.

Non-communicable diseases.
Digital health and artificial intelligence.
Universal health coverage.
Mental health.
Access to medicines and innovation.

These themes shape how care is delivered, how devices are regulated, how data is governed, and how stigma is acknowledged or ignored.

Global health governance influences research priorities, funding streams, and national implementation strategies. It shapes the conditions in which we manage our conditions.

If youth perspectives are absent from those conversations, the distance between policy and lived experience widens.

One consultation theme I expect to hear clearly — especially from young people living with diabetes — is the layered reality of affordability and stigma.

Affordability is not only about the price of insulin or devices. It is about aging out of parental coverage. It is about navigating early career jobs without benefits. It is about provincial variation in access to technologies that are framed as “standard of care” but remain unevenly funded.

And stigma compounds that burden. Young people are often expected to self-manage perfectly while proving they are capable students, employees, partners, and leaders. When blood sugars fluctuate, it is read as irresponsibility. When devices are visible, it invites commentary. When mental health falters, it is framed as weakness rather than chronic strain.

If we want better outcomes, we have to name the conditions around the condition.

The 4Ls at the Global Level

At Diabetes Action Canada, we speak about the 4Ls framework: Lived, Loved, Learned, and Laboured experience all belong at the table.

Science is stronger when it is informed by lived experience.
Policy is more durable when it reflects caregiving realities.
Health systems are more responsive when they integrate frontline insight.

Extending that philosophy into global health governance is not symbolic. It is structural.

Canada’s engagement at WHO and PAHO shapes technical guidance, global strategies, and shared commitments that cascade into national systems. The work we do nationally does not sit outside that architecture. It is shaped by it.

Bridging grassroots co-design with multilateral diplomacy is not a contradiction. It is necessary infrastructure.

Carrying Both Worlds

The stereo will still be playing when I walk into those rooms.

I will still manage insulin doses. I will still respond to device alarms. I will still live inside the constancy of chronic disease.

And I will sit in spaces where global health priorities are debated and negotiated. Spaces where language becomes strategy, and strategy becomes lived reality for millions of people.

As Director of Patient Engagement at Diabetes Action Canada, I have seen what happens when lived experience is integrated early and meaningfully into decision-making. Research improves. Trust strengthens. Outcomes shift.

As Canada’s Youth Delegate on Global Health, I carry that same commitment forward.

Youth deserve more than symbolic inclusion.

They deserve influence.

And lived experience does not belong on the margins of policy.

It belongs in the rooms where decisions are made. 

An Invitation 

If you are under 40 and living with diabetes, or if you work with young people navigating this condition, I invite you to help shape what Canada carries into those rooms.

Over the coming months, we will be hosting consultation opportunities through Diabetes Action Canada. We are starting with a very short survey to identify the priorities and questions that matter most to youth and young adults with diabetes.

Your input will help set the agenda for what is elevated in consultations and what is brought forward into global health discussions.

If youth and diabetes perspectives are not named early, they are often missing later.

Let’s name them.