From Brain Cancer to Patient Power: Challenging the System and Building a Movement for Change

Nov 6, 2026

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Episode Summary 

At 21, pianist Matthew Zachary faced a brain cancer diagnosis that disrupted his education, career plans, and sense of belonging. In this candid conversation, he reflects on delayed diagnosis, difficult treatment decisions, and the isolation of young adult cancer. He shares how finding a fellow survivor helped launch his advocacy journey, why he founded Stupid Cancer, and how We the Patients aims to turn individual healthcare experiences into collective influence.

 

Episode Highlights

  • 02:29 — When playing the piano revealed something was wrong: Matthew recalls losing coordination in his left hand and spending months seeking answers before doctors discovered a brain tumour.

  • 07:18 — Treatment without a community of peers: He describes surgery, radiation, and the loneliness of being a young adult surrounded by patients at very different stages of life.

  • 09:42 — The caregiver behind the scenes: Matthew honours his father’s role in navigating insurance, transportation, and emotional support—and the journal that preserved their family’s experience.

  • 14:29 — A pivotal lesson in patient autonomy: Learning about potential chemotherapy side effects changed Matthew’s treatment decision and exposed how little he had been included in conversations about his future.

  • 19:45 — Finding someone who understood: Meeting his first cancer buddy after seven years opened the door to connection, validation, and advocacy.

  • 21:40 — Building the community he wished he had: Matthew explains how his creative and media background helped shape Stupid Cancer, bringing humour, shared experiences, and belonging to young adults affected by cancer.

  • 24:30 — Looking upstream at healthcare’s problems: He discusses why understanding financial incentives and power matters when trying to change a healthcare system.

  • 27:47 — The vision behind We the Patients: Matthew introduces an initiative to gather patient and consumer experiences with health insurance, with a longer-term goal of building collective civic influence.

  • 32:30 — Making individual experiences count: He shares his perspective on challenging insurance denials, using available tools, and bringing patient stories together to reveal broader patterns.

  • 35:50 — Introducing his book: Matthew discusses We the Patients: Understanding, Navigating, and Surviving America’s Healthcare Nightmare.

Links & Resources

 

Matthew Zachary

Author of We the Patients (Wiley 2026) | Principal, Matthew Zachary Worldwide | Patient Rights Activist | Keynote Speaker | 30-year brain cancer survivor | Healthcare’s Unfiltered Voice of Reason

Matthew Zachary is a brain cancer survivor, patient advocate, classically trained pianist, and founder of Stupid Cancer and We the Patients. Diagnosed at 21, he turned his experiences of isolation and navigating healthcare into work centred on community, patient autonomy, and systemic change. Drawing on his background in music, advertising, and media, Matthew brings humour and candid storytelling to conversations about survivorship and patient rights. He is the author of We the Patients: Understanding, Navigating, and Surviving America’s Healthcare Nightmare.

A fluently bilingual (English and French) native of Montreal, Allan founded SSP in 2004 following several years in senior leadership positions with global health and benefits consulting firms, and workplace health service providers.  He is currently based in the Toronto, Canada area.

Allan sits on HealthPartners Canada’s Board of Directors, which conducts workplace giving campaigns in support of 20 of Canada’s health charities. He has a lengthy and varied patient history, and serves as an impact speaker with the Speakers Bureau. He candidly shares his patient experiences and key learnings, together with learnings from his professional work, as a means of helping patients and workplace stakeholders improve practices and enhance outcomes.

Allan serves on several health & benefits industry advisory groups and committees. He is a faculty member at Centennial College’s Workplace Wellness & Health Promotion post-graduate program and is also a volunteer mentor for the Waterloo Region Small Business Centre. Allan a past winner of Benefits Canada’s Workplace Benefits Award, and is a frequently invited speaker and writer on workplace health and benefits issues.

Disclaimer:

The views and opinions expressed by guests on Amplify are their own and do not necessarily reflect those of the podcast, its hosts, Patient Voice Partners, or its affiliates.

Medical Disclaimer:

The content shared on Amplify is for informational and educational purposes only.

Nothing discussed on this podcast—including stories, experiences, perspectives, or commentary from hosts, guests, or contributors—should be interpreted as medical advice, diagnosis, or treatment recommendations.

Always seek the guidance of your physician or other licensed provider with any questions regarding your health, medical conditions, or treatment options.