When Technology Meets Lived Experience: Duncan's Talk at Elixir Conference 2025

In June, our President, Duncan Preece, took the stage at Elixir Conference to share something rarely captured in a slide deck: what it is like to live with stage 4 ALK‑positive lung cancer within a system that is not yet designed for precision medicine.

The video, “Elixir Conference 2025: Duncan’s Presentation,” follows his journey from a sudden diagnosis to building a patient‑led organization, and sets out a clear challenge to Canada’s health‑care system: as we continue that path of personalized medicine, our structures, funding models, and testing pathways must evolve to support it properly.

You can watch the full talk here: Duncan Preece – A patient’s perspective on what matters

A Diagnosis That Started in the Brain

Duncan begins by explaining how his cancer was discovered—not through a lung symptom, but through brain metastases. In 2018, he went from being a seemingly healthy person to being told he had stage 4 lung cancer that had already spread to his brain.

He then describes the uncertainty, the rapid decisions, and the relief of finally being matched with a targeted therapy that worked. His story reflects what many in the ALK community experience: the shock of diagnosis, the steep learning curve around biomarker testing and targeted therapies, and the emotional weight of knowing that treatment options affect not only survival, but quality of life.

This lived experience was a core reason Duncan helped found ALK Positive Canada—to ensure people do not have to navigate this journey alone, and to advocate for systems that deliver the right test and the right drug at the right time.

Progress in ALK‑Positive Lung Cancer—And Where Canada Is Falling Behind

Duncan is clear that ALK‑positive lung cancer remains incurable. However, that is not the entire story.

He highlights how advances in targeted therapies have transformed outcomes. Median overall survival has increased from about two years to around seven years for many people with ALK‑positive disease. For some, these therapies can turn an immediate crisis into a chronic, manageable condition, allowing them to continue working, parenting, and planning their lives.

At the same time, Duncan underlines the gap between what is possible in science and what is available in practice. Multiple ALK tyrosine kinase inhibitors (TKIs) now exist, but access in Canada is inconsistent and often delayed. Patients may wait months—or never qualify—for treatments that are standard in other countries.

Systemic Weaknesses: Testing, Screening, and Access

A central theme in the presentation is how systemic weaknesses prevent patients from reaching the right diagnosis and treatment quickly enough.

Duncan points to:

• A lack of systematic biomarker testing for all people with lung cancer, meaning many never learn they have ALK‑positive disease or another actionable driver.
• The absence of early screening programs for people who never smoked, even though ALK‑positive lung cancer often occurs in younger adults with little or no smoking history.
• Uneven access to specialized care and testing across provinces and regions.

These gaps are not just abstract policy issues; they have real human consequences. Delayed or incomplete testing can result in the wrong treatment, unnecessary chemotherapy, or missing the opportunity to use targeted therapies at all.

“Tinkering at the Edges” Is Not Enough

In the latter part of his talk, Duncan argues that incremental fixes are no longer sufficient. If Canada wants to benefit fully from next‑generation precision medicine, structural change is required.

He calls for stronger national coordination and improved drug funding frameworks, including moving cancer drug funding away from fragmented provincial control toward a more coherent federal approach. The goal is not simply to spend more, but to spend more effectively—anchored in biomarker‑driven care, timely access to innovation, and equity across provinces.

For people living with ALK‑positive lung cancer, this type of reform could be the difference between having one or two lines of effective treatment and having a full, well‑planned sequence of therapies over many years.

Treating Patients as People, Not Statistics

Beyond the technical details, one of the most compelling aspects of Duncan’s presentation is his reminder that every data point represents a person with a family, a job, and a life in motion.

He underscores the importance of:

• Clear, honest communication from oncologists and care teams.
• Recognizing the emotional impact of uncertainty.
• Viewing patients as partners in decision‑making, not just recipients of care.

This message is closely aligned with what our community has been voicing for years: survival curves and response rates matter, but so do conversations, respect, and support along the way.

Why This Talk Matters

Duncan’s presentation underscores a crucial point: the future of health care is not only about tools, algorithms, or drugs. It is also about whether those innovations reach real people in time, and whether systems are prepared to adapt to what precision medicine requires.

For patients and families, his talk offers both validation and hope: validation that the barriers they face are systemic, not personal failures; and hope that, collectively, we can advocate for change.

For clinicians, policymakers, and partners, it is an invitation to view Canada’s health‑care framework through the eyes of someone living with the consequences of delay and under‑funding—and to consider what a truly patient‑centred, biomarker‑driven system could look like.

To hear Duncan’s full story and his vision for change, you can watch the video here: Elixir Conference 2025: Duncan’s Presentation.