Patients, Profit & Power: It's Time to Take Healthcare Back Featuring Matthew Zachary, Patient Advocate, Author & Host of Out of Patients Hosted by Dr. Sadhna Bokhiria About This Episode What happens when the people healthcare is supposed to serve have the least power in the room? Matthew Zachary has spent nearly three decades asking that question, and refusing to accept the usual answers. Diagnosed with a malignant brain tumor at just 21, Matthew's plans for a career as a musician and composer disappeared almost overnight. He survived, but as he tells Sadhna in this episode, "I didn't die, but I lost my life." What came next eventually turned that experience into a much bigger mission. Matthew went from advertising and marketing into cancer advocacy, founded Stupid Cancer to address the largely overlooked needs of adolescents and young adults with cancer, and became an early voice in healthcare podcasting. Today, his focus has moved even further "upstream": beyond helping patients navigate a difficult system toward questioning why that system creates so many barriers in the first place. In this candid conversation, Matthew and Sadhna unpack what has genuinely improved in healthcare over the last 30 years and what remains painfully familiar. They talk about insurance, affordability, patient navigation, nonprofit infrastructure, incentives, collective patient power, and the absurdity of expecting someone fighting for their health to simultaneously become an expert in the healthcare system. Matthew also shares the thinking behind his book, We the Patients, and his argument for something healthcare has historically lacked: an organized patient voice with enough collective power to demand change. This isn't a conversation about whether American healthcare is simply "good" or "bad." It's about who holds the power, who pays the price, and what it might take to move patients from navigating the system to helping reshape it. Episode Highlights 08:08 — A brain cancer diagnosis at 21 changed the trajectory of Matthew's life Matthew shares how he went from an aspiring musician and film composer to losing the ability to play with his left hand, being misdiagnosed for months, and ultimately discovering he had a malignant brain tumor. Survival came with its own reckoning: "I didn't die, but I lost my life." 10:01 — The chance encounter that turned a cancer survivor into an advocate Seven years after his diagnosis, Matthew met his first fellow young-adult brain cancer survivor. That relationship introduced him to patient advocacy—and to the idea that his experience could help "the next you" have an easier time. 12:23 — Why he founded Stupid Cancer Matthew explains why young adults with cancer were being overlooked by traditional cancer advocacy and how Stupid Cancer helped build a community specifically around adolescent and young adult cancer. 14:47 — Advocacy as making "the next you" have a less difficult time Matthew describes advocacy as an evolving mission. Every problem solved exposes another layer underneath—a phenomenon he describes as a "social ebb tide." 16:18 — Stop catching people after they fall. Start asking why they're falling. One of the central ideas of the episode: Matthew explains why his work has shifted "upstream." Support and navigation matter, but he increasingly wants to address the structures that create the need for them in the first place. 21:21 — "We, as patients, are not the end users of American healthcare." Matthew challenges the idea that American healthcare operates like a conventional consumer marketplace and explains why he believes patients have historically lacked meaningful collective power within it. 23:05 — What would happen if patients actually organized? The conversation moves from disease-specific advocacy toward Matthew's idea of patients organizing around shared healthcare interests. His argument: patients may be fragmented by diagnosis, but many of their frustrations with access, insurance and affordability are shared. 29:43 — The things patients only discover after something goes wrong Why does so much healthcare knowledge arrive as "If only I had known…"? Matthew and Sadhna discuss navigation, rights, appeals and resources patients often discover only after encountering a problem—and Matthew delivers one of the episode's sharpest lines: "Complexity is the profit." 32:42 — Patient support isn't a luxury. It's infrastructure. The conversation turns to navigation and support systems as forms of harm reduction—and why patients shouldn't have to stumble upon the right person, organization or resource by luck. 35:12 — The uncomfortable economics of nonprofit work Sadhna and Matthew dig into expectations around nonprofit leadership, overhead and compensation—and whether expecting mission-driven organizations to operate without adequate infrastructure ultimately undermines the very causes they exist to serve. 44:34 — Thirty years later: what has actually gotten better? Matthew reflects on three decades of change. There are more treatments, greater attention to quality of life and mental health, and better recognition of the broader patient experience. But those advances have also created new challenges around cost, access and insurance. 47:56 — The shared frustration hiding in plain sight Matthew argues that frustration with health insurance cuts across diagnoses and backgrounds—and could represent an opportunity for patients to recognize how much common ground they actually share. 51:08 — Is anyone getting healthcare completely right? Sadhna brings her experience of the UK healthcare system into the conversation, while Matthew discusses the limitations of comparing healthcare systems and offers a remarkably simple starting point: people shouldn't go broke because they get sick. 54:54 — Why patients shouldn't have to become healthcare experts Being diagnosed with cancer is hard enough. Becoming an expert in insurance, navigation, appeals and healthcare bureaucracy at the same time? Matthew and Sadhna agree: that expectation itself is part of the problem. 56:51 — We the Patients and what Matthew wants people to understand Matthew closes with the idea behind his book: understanding the history of how American healthcare became what it is today—not simply declaring the system "broken," but examining how its structures and incentives were created. About Matthew Zachary Matthew Zachary is an award-winning patient advocate, author, podcast host, keynote speaker, and 30-year brain cancer survivor who has spent nearly three decades challenging the status quo in American healthcare. Diagnosed with brain cancer at 21, Matthew went on to become a prominent voice in patient advocacy, including founding Stupid Cancer, an organization that helped bring national attention to the distinct needs of adolescents and young adults living with cancer. Often described as "The People's Voice in Healthcare," his work combines advocacy, storytelling, humor, and a willingness to ask uncomfortable questions about how healthcare actually works for the people navigating it. He is the author of We the Patients and host of Out of Patients, his long-running independent healthcare podcast exploring the people, policies, incentives, and experiences shaping American healthcare.
