Podcasts about Patient advocacy

Vasanta Pundarika built her career inside healthcare investment banking before launching Lotuspring, an advisory firm focused on women's health and behavioral health. She spent nearly 20 years advising healthcare systems, treatment providers, and growth stage companies on mergers, financing, and operational strategy while watching the industry repeatedly misunderstand the people it claimed to serve.The conversation starts unexpectedly with anthropology, bread, and language. Vasanta explains how she spent years changing the pronunciation of her own name to make other people comfortable before eventually reclaiming it. That thread opens into a much larger discussion about adaptation, identity, and what institutions quietly train people to tolerate.From there, the discussion moves into behavioral health, women delaying care, and the invisible labor that healthcare business models routinely ignore. During COVID, Vasanta noticed men's behavioral health units refilled faster than women's units. The reason had nothing to do with demand. Women were still home managing caregiving responsibilities, children, aging parents, and households while their own mental health collapsed in the background.The episode examines what happens when healthcare companies become “snazzy big brands” before building real clinical substance underneath. Vasanta describes the tension between mission and margin inside healthcare startups, private equity backed care models, and behavioral health expansion. The conversation pushes on who benefits when healthcare scales aggressively, who absorbs the operational pressure, and how patient trust erodes long before executives notice it on a dashboard.They also discuss patient advocacy culture, anthropology as systems analysis, healthcare capitalism, prior authorization, investor language, and why some clinically excellent companies never survive long enough to scale.RELATED LINKSVasanta PundarikaLotuspringWomen's Health HorizonsSakhi for South Asian SurvivorsNACDPrinceton University Anthropology DepartmentFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Doctors often follow guidelines not because of evidence, but due to quality metrics. Hear how patient advocacy can shift the conversation. #DoctorPressure #StatinDebate #GuidelineFatigue #HealthTalks

TODAY ON THE ROBERT SCOTT BELL SHOW: Jonathan Emord, CDC Nominee, "The Science, "Fauci Probe, COVID Injury Reform, Medicare Overhaul, Kimberly Overton & Amy Whitlock, Patient Advocacy, Iridium Metallicum, Lyme Disease Options, Cholesterol Triglycerides, and MORE! https://robertscottbell.com/jonathan-emord-cdc-nominee-fauci-probe-regarding-covid-covid-injury-reform-medicare-overhaul-kimberly-overton-amy-whitlock-iridium-metallicum-lyme-disease-caller-of-the-day-cholesterol-ques/ Purpose and Character The use of copyrighted material on the website is for non-commercial, educational purposes, and is intended to provide benefit to the public through information, critique, teaching, scholarship, or research. Nature of Copyrighted Material Weensure that the copyrighted material used is for supplementary and illustrative purposes and that it contributes significantly to the user's understanding of the content in a non-detrimental way to the commercial value of the original content. Amount and Substantiality Our website uses only the necessary amount of copyrighted material to achieve the intended purpose and does not substitute for the original market of the copyrighted works. Effect on Market Value The use of copyrighted material on our website does not in any way diminish or affect the market value of the original work. We believe that our use constitutes a 'fair use' of any such copyrighted material as provided for in section 107 of the U.S. Copyright Law. If you believe that any content on the website violates your copyright, please contact us providing the necessary information, and we will take appropriate action to address your concern.

In 2008, bankers made reckless bets with your money, burned the economy to the ground, and kept their bonuses while you paid the bill. Economists call it moral hazard: when the person making the decision never suffers the consequences of being wrong, they get careless. They get greedy. And they stop caring whether what they're selling you actually works.We swore never again. We were lied to. Right now, there's an industry embedded in your doctor's office, your child's school, and your own family that runs the exact same scam — except the losses aren't measured in foreclosures. They're measured in your kids. It knows things about its product it will never tell you. It gets paid whether you improve or deteriorate. And when it fails you, that failure doesn't trigger accountability. It generates the next invoice. You've probably already been a customer. You may be one right now.Dr. Roger McFillin builds the case one brick at a time — and by the end, you'll understand why the worst outcomes in American life keep getting rewarded with more money, more power, and more access to your children.Once you see it, you can't unsee it.

Brad Power spent years advising major corporations on systems design, process engineering, and decision making before lymphoma shoved him into the patient side of American healthcare. Instead of accepting the experience at face value, he started reverse engineering the machinery around cancer itself. Brad is the founder of Cancer Patient Lab and Open Cancer AI, two projects built around a blunt reality most patients discover too late: the healthcare system rewards people who know how to navigate it. Everyone else risks getting steamrolled by information asymmetry, insurance barriers, administrative friction, and institutional incentives designed around efficiency instead of human survival.The conversation starts with Harvard Business Review and Tumblr blogs before moving directly into the darker architecture underneath modern cancer care. Power explains how hospitals optimize for throughput, how insurance companies reward operational consistency over personalized medicine, and why many patients quietly end up needing a crash course in oncology, reimbursement policy, and behavioral psychology while fighting for their lives.The discussion digs into CAR-T therapy, functional testing, AI assisted decision support, and the growing collision between personalized medicine and standardized care pathways. Power argues that engaged patients often get better outcomes because they learn how to push for off guideline treatments, contest denials, and ask smarter questions. The counterpoint lands hard: patients should never have needed to become experts in the first place.The episode also explores the cultural consequences of AI entering cancer care. OpenAI advertising, data privacy, trust erosion, pharmaceutical influence, and “agentic AI” all collide inside a healthcare economy already drowning in distrust. Power sees artificial intelligence as a force multiplier for patient literacy and access. The larger system still decides who gets approved, who gets delayed, and who gets left behind.By the end, the conversation lands exactly where modern healthcare keeps forcing people to land: survival increasingly depends on learning how the machine works before the machine works on you.RELATED LINKSBrad PowerCancer Patient LabOpen Cancer AIHarvard Business ReviewResearch to the PeopleCAR T Cell TherapyFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Some of you may know that I'm a Board Certified Patient Advocate. I don't currently do a lot of individual advocacy because my speaking schedule doesn't allow for the necessary time availability so I typically either work on complex or emergency cases, or on cases that are not strictly timebound - most of these are people who are dealing with a BMI-based denial of care, meaning that their healthcare is being held hostage for a weight loss ransom. This is one of those situations and I am, as always, sharing this story with permission and anonymously by request. Get full access to Weight and Healthcare at weightandhealthcare.substack.com/subscribe

By the time the paper hit version 71, Dr. Nirosha Murugan had already done the hard part. The data were real. The experiment had worked. A team of researchers had used a wearable bioreactor to trigger limb regeneration in frogs, a result with obvious implications for regenerative medicine. But the science still wasn't getting over the line. The problem wasn't the work. It was the translation.On this episode of Standard Deviation, host Oliver Bogler talks with Dr. Nirosha Murugan, a biophysicist and Tier II Canada Research Chair in Tissue Biophysics at Wilfrid Laurier University, about what happens when a scientist working at the edges of quantum biology, bioelectricity, and tissue regeneration runs headfirst into the unwritten rules of academic publishing. Murugan's research asks biologists to think beyond molecules and chemistry alone, and to consider the physical signals, electromagnetic fields, and invisible forces that shape development and healing. It is ambitious science. It is also exactly the kind of work that can make gatekeepers nervous.Bogler follows Murugan through the less glamorous part of discovery: the hidden curriculum of getting a paper published, securing scientific credibility, and learning that data do not simply “speak for themselves.” Murugan describes how jargon buried the pitch of her own work, how a lack of editorial support left her at a disadvantage, and how the JEDI program at the Life Science Editors Foundation paired her with a former journal editor who taught her how to structure a manuscript, write a cover letter, and survive peer review.The result was publication in Science Advances, but the larger story is about power. Who gets taught the rules of biomedical research. Who has access to grant writers, editors, and institutional polish. Who is left to brute-force their way through the maze. And how one scientist, having finally found the map, now makes sure her own trainees do not have to learn it the hard way.RELATED LINKSDr. Nirosha Murugan⁠Wilfrid Laurier University⁠Life Science Editors Foundation⁠JEDI Program⁠Science Advances paper on limb regeneration⁠FEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

For many families navigating chronic illness, it's hard to imagine what the future might look like for their child. This week on Inside the Children's Hospital, Katie Taylor sits down with Vincent Rosche, a patient advocate, fitness enthusiast, and survivor who has spent most of his life navigating complex medical challenges. Diagnosed with chronic intestinal pseudo-obstruction (CIPO) at just 9 months old, Vincent grew up with feeding tubes, central lines, frequent hospitalizations, and even battled thyroid cancer as a teenager. Today, Vincent works as the Community Engagement Coordinator for the Oley Foundation, connecting patients and families receiving home nutrition support with resources, education, and peer support. In this inspiring conversation, Vincent shares: • His earliest memories of growing up in the hospital • The profound impact Child Life Specialists and therapy dogs had on his experience • What his parents did that made the biggest difference during difficult times • Navigating school while managing complex medical needs • Learning to advocate for himself as a patient • How fitness transformed his health and confidence • Becoming a bodybuilding competitor despite lifelong health challenges • The importance of community, connection, and peer support • Resources available through the Oley Foundation for pediatric and adult patients ⏰ Timestamps 00:00 Introduction 00:50 Vincent's diagnosis and medical journey 02:52 Life today: advocacy, fitness, and dogs 04:02 Therapy dogs and Child Life memories 05:43 Earliest hospital experiences 07:14 The role of family and support 10:21 Advice for parents navigating chronic illness 17:34 School and growing up medically complex 23:24 Learning self-advocacy 28:20 Discovering fitness 32:59 Becoming a personal trainer 36:15 Competitive bodybuilding 37:59 Joining the Oley Foundation 40:23 Peer support and patient advocacy 45:12 Resources for families 49:49 How to connect with Vincent 51:05 Lessons learned and proudest accomplishments 58:47 A message of hope for parents 01:00:00 Closing Vincent offers a powerful message to parents who are in the thick of it right now: you're doing better than you think, and your child remembers your love more than your mistakes. Whether you're a parent, caregiver, healthcare professional, or someone living with a chronic condition, this conversation is filled with hope, perspective, and practical wisdom. Learn more about the Oley Foundation at https://oley.org Connect with Vincent: Instagram: @chronically_fit_life Facebook: Vincent Rosche Connect with us! Instagram: @childlifeoncall + @insidethechildrenshospital Subscribe: Never miss an episode on Apple Podcasts or Spotify. Visit insidethechildrenshospital.com to search stories and episodes easily Leave a Review: It helps other families find us and access our resources   Medical information shared in this episode is not a substitute for professional medical advice. Please consult your care team for guidance specific to your child and family. Keywords:  Chronic Illness, Rare Disease, Patient Advocacy, Medical Parenting, Pediatric Healthcare, Feeding Tube, TPN, Chronic Intestinal Pseudo-Obstruction, Child Life Specialist, Resilience    

Dr. Jess Peatross trained in conventional medicine and worked as a hospitalist before she started questioning why so many chronically ill patients kept getting worse inside the healthcare system she trusted. Her perspective carries weight because she spent years following every protocol exactly as taught before walking away from hospital medicine entirely.Raised in Huntington, West Virginia during the opioid crisis, she entered medicine believing the system existed to heal people. Instead, she found hospitals driven by billing codes, liability management, and pharmaceutical dependence while patients with chronic illness, autoimmune disease, mold exposure, and chronic pain cycled endlessly through appointments and prescriptions.Dr. Peatross explains what pushed her toward functional medicine, cannabis therapy, and prevention focused care after watching patients improve only after leaving conventional treatment pipelines behind. The conversation tackles physician burnout, chronic illness stigma, healthcare incentives, and the growing collapse of trust between patients and institutions.The discussion also moves into supplements, environmental toxins, ultra processed food, and the uncomfortable economics behind keeping people permanently sick but continuously billable. Dr. Peatross describes the professional backlash that comes with challenging medical orthodoxy while Matthew connects her experience to the broader erosion of public trust across American healthcare.Together they unpack what happens when patients stop believing the system can help them and start searching elsewhere for answers.RELATED LINKSDr. Jess PeatrossInstagramMarshall UniversityBrave New WeedFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

In this episode of MENO with Jacqueline Buckingham, we sit down with Board-Certified Urologist and Sexual Medicine Specialist Dr. Rachel Rubin to discuss why hormone therapy is a fundamental element of women's healthcare. Dr. Rubin challenges the historical stigma surrounding hormones, explaining that past concerns were often based on flawed data from synthetic products that are no longer standard practice. She advocates for an individualized approach to hormone therapy where patients are empowered with information to make the best decisions for their specific goals, whether they are seeking relief from hot flashes, prevention of osteoporosis, or improvement in libido and sexual function. The conversation delves into the specific benefits of various hormone treatments: ➡️ Vaginal Hormone Therapy: Dr. Rubin describes low-dose local vaginal hormones (estrogen or DHEA) as highly effective, evidence-based treatments for symptoms like dryness, pain, and urinary urgency. She notes these treatments are safe for most women and can reduce urinary tract infections (UTIs) by more than half. ➡️ The "Female Viagra": Dr. Rubin refers to vaginal hormones as the equivalent of "female Viagra" because they improve blood flow to sexual organs, enhancing arousal and making orgasms better. ➡️ Systemic Hormone Therapy: The discussion covers whole-body hormone therapy—including estrogen, progesterone, and testosterone—which can be administered via patches, rings, or creams to address a broader range of menopausal symptoms. ➡️ Mental Health Connection: Dr. Rubin highlights the "amazing benefit" of hormone therapy in managing anxiety and depression that often emerges during perimenopause. ➡️ Bioidentical Hormones: She clarifies that there are FDA-approved bioidentical hormones available that are both safe and often covered by insurance. ➡️ Jacqueline and Dr. Rubin also discuss pelvic floor rehab, the neurological connection between the spine and sexual organs, and how patients can find knowledgeable specialists to build their own "medical pit crew". RESOURCES The Menopause Society: menopause.org ISSWSH (International Society for the Study of Women's Sexual Health): isswsh.org American Physical Therapy Association (for Pelvic Floor Therapy): apta.org ABOUT MENO MENO is the definitive platform for menopause and perimenopause care — connecting women to trusted experts, solutions, and support https://joinmeno.com/ https://www.instagram.com/join.meno https://www.tiktok.com/@join.meno Follow our Founder/CEO on Instagram @jacquelinebuckingham Disclaimer: MENO is for general information and entertainment purposes only and does not constitute the practice of medicine in any way. MENO does not constitute professional health care services or medical advice. No doctor/patient relationship is formed as a result of this podcast. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of MENO is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard getting medical advice for any such medical condition they may have and should seek the assistance of their healthcare professionals for any conditions. Learn more about your ad choices. Visit megaphone.fm/adchoices

Are your blood markers telling you and your doctor the whole story? Chronic inflammation is the silent driver behind nearly every major disease, and the good news is that your lifestyle choices decide the outcome. Don't wait for a life altering diagnosis to take action.In this episode of Salad With a Side of Fries, host Jenn Trepeck breaks down how blood markers move, how preventable diseases develop, and why epigenetics means your genes are not your fate. If you have ever felt like your health was out of your hands, this episode will change the way you think about your daily choices.What You Will Learn in This Episode:✅ Why chronic inflammation is considered the root cause of virtually every major illness and how oxidative stress accelerates disease progression in the body.✅ How epigenetics reveals that your lifestyle choices, not just your genetics, impact disease-related genes.✅ What specific blood markers to track for heart disease, type 2 diabetes, liver disease, and kidney disease, and realistic timelines for improving them.✅ How to advocate for yourself in a medical system still rooted in a prescription-first approach, and how to ask your doctor for the time and space to make disease prevention changes first.The Salad With a Side of Fries podcast, hosted by Jenn Trepeck, explores real-life wellness and weight-loss topics, debunking myths, misinformation, and flawed science surrounding nutrition and the food industry. Let's dive into real-life wellness and weight loss, including drinking, eating out, and skipping the grocery store.TIMESTAMPS:00:00 Preventable diseases don't have to be your story and what blood markers can and cannot tell you05:55 The most common diseases: heart disease, type 2 diabetes, and cancer and how they are linked to lifestyle choices06:46 Epigenetics explained: how your daily habits turn disease risk genes up or down17:21 Lifestyle choices, from gut health to the brain to the endocrine system, impact every organ system20:10 Oxidative stress and free radicals explained: the science behind chronic disease25:01 Lifestyle choices that support overall health rather than disease and healthcare 3.0, being your own advocate32:12 Discussion of food with no labels; vegetables, fruit and lean meat36:19 Movement as disease prevention: why sitting all day quietly drives chronic illness more than we realize41:06 Longevity, community, connection, sleep, and stress management as overlooked pillars of health42:05 Blood marker timelines: how fast insulin, A1C, cholesterol, and blood pressure respond to lifestyle changesKEY TAKEAWAYS:

SummaryFaye Perez discusses her journey into independent patient advocacy, the importance of community support for those with chronic illnesses, and the launch of her new magazine, the Good News Gazette. The discussion highlights the need for safe spaces in healthcare, the role of art in healing, and the impact of generative AI on creativity. Faye emphasizes the significance of lifting each other up and fostering a supportive community for individuals navigating the complexities of chronic illness and disability.Chapters00:00 Reconnecting with Faye: New Beginnings02:49 The Role of Independent Patient Advocacy05:57 Navigating the Healthcare System08:49 Creating Safe Spaces for Patients11:46 The Butterfly Guild: Affordable Advocacy Services14:34 The Good News Gazette: A Positive Spin17:46 Reflections on Society and Healthcare18:54 Creating Joy Through Community and Art20:41 Surprising Artistic Talents in the Community22:26 The Importance of Real Art Over AI23:57 Embracing Age and Authenticity25:49 The Role of Universal Income in Supporting Artists27:42 The Value of Community in the Disability Space29:44 The Need for Societal Support for Artists32:06 The Uniqueness of Human Creativity33:48 The Impact of Stories and Community36:08 Building a Supportive Community for All

Farla Efros is a senior retail executive and former CEO who built and sold companies before facing her own breast cancer diagnosis. She brings that same operational mindset into a healthcare system that expects patients to manage complexity while they are at their most vulnerable.She was on a client call in Spain when the diagnosis came through. A clear mammogram had missed it. An MRI caught it. Within hours, she was ordering binders, building a plan, and structuring her treatment like a turnaround strategy. Every appointment became a meeting. Every doctor faced an agenda with dozens of questions. She paid out of pocket for PET scans that were denied and hired a third party firm to validate her treatment path when her own doctors resisted outside input. The conversation tracks what happens when a high-functioning executive enters a system built on delay, denial, and fragmentation. Efros describes negotiating for tests, managing physician relationships, and assembling an “executive board” of advisors across conventional and alternative care. She calls the experience “the worst client I ever had,” exposing how administrative burden shifts onto patients and families.The tension sits between what worked for her and what is inaccessible to most. Her approach requires confidence, time, and fluency in navigating power. The system rewards that behavior while quietly failing patients who cannot replicate it. Insurance coverage still left her paying out of pocket. Doctors pushed standard protocols over precision medicine. Survivorship offered little support once treatment ended.This episode examines how cancer care operates as a series of incentives rather than a coordinated system, and why patients are forced to become operators just to get through it.RELATED LINKSFarla EfrosFarla Efros on LinkedInF*ck CancerF*ck Cancer on AmazonAccentureCTOAMPULL QUOTES“I treated cancer like the worst client I ever had.”“They wouldn't approve the test, so I paid for it myself.”“Every appointment was a negotiation.”FEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

In 2020, Emily Mendenhall drove from Washington, DC to Okoboji, Iowa, a town of 800 that swells to 200,000 every summer, and walked into a pandemic that looked nothing like the one dominating national headlines. Inside gas stations and bars, masks marked you as an outsider. In one stop, a man told her family they would not be served if they kept theirs on. Her 6 year old daughter cried, confused. Mendenhall, a medical anthropologist at Georgetown University, did what she always does. She started asking questions. Over months, she interviewed neighbors, former classmates, and local officials, including her own brother in law who helped lead the local COVID response. The result became Unmasked, a case study in how community identity, economics, and politics shaped public health decisions in real time. That work led directly into her latest book, Invisible Illness: A History, from Hysteria to Long COVID, where she tracks a much older problem. Patients with chronic illness, especially women, often fail to meet medicine's demand for proof. Without a clear diagnosis, they lose access to care, insurance coverage, and legitimacy. Mendenhall argues that long COVID did not create this failure. It exposed it.This conversation centers on how healthcare systems reward certainty and punish complexity. Long COVID clinics send patients to 17 specialists without resolution. Insurance structures require diagnoses that many conditions cannot provide. Medical training still struggles to integrate trauma, mental health, and chronic disease into a coherent model of care.Mendenhall brings lived experience into the conversation. After COVID, she dealt with months of fatigue and escalating anxiety that altered her baseline health. She does not claim the label of long COVID, but she understands how quickly the system becomes harder to navigate once symptoms stop fitting clean categories. The stakes are not theoretical. In the United States, access to healthcare, disability benefits, and treatment still depends on whether a condition can be measured, coded, and reimbursed. For millions living with invisible illness, the burden of proof becomes the illness itself.RELATED LINKSEmily MendenhallInvisible Illness: A History, from Hysteria to Long COVIDScience PoliticsGeorgetown UniversityFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Cassels shares how patients can ask smarter questions, avoid unnecessary meds, and regain control in the exam room. #PatientAdvocacy #AskYourDoctor #InformedDecisions #HealthTalks

At 25, Jace Yawnick was building a career in health and wellness sales, chasing growth, status, and the usual young adult fantasy of getting somewhere fast. Then his body stopped cooperating. Fatigue turned into chemotherapy. The diagnosis was primary mediastinal B cell non Hodgkin lymphoma, and the rest of his life split into before and after. Now in remission, he talks about cancer the way people actually live it, not the way nonprofits package it. He gets into survivorship, mental health, young adult isolation, and the deadening absurdity of prior authorization. One of the sharpest parts of the conversation lands on a simple American insult disguised as policy: treatment innovation means very little when insurance can still deny the scan, the drug, or the next step. Jace has seen that firsthand, including during routine monitoring after active treatment. This episode tracks what happens when a young cancer patient becomes a public voice and refuses to play mascot. It covers oncology, insurance, remission, advocacy, and the long mental hangover that follows survival. It also names the part too many institutions dodge: the system works great right up until it doesn't, and when it fails, patients get handed the bill, the panic, and a camera if they want anyone to care. RELATED LINKSJace Beats CancerJace Yawnick on LinkedImConquer Cancer ArticleCURE Today ArticlePyure BrandsFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

What if the most important care in the entire healthcare system is also the most underfunded? While hospitals and inpatient reimbursements rise with inflation, the physician fee schedule has quietly declined roughly 33% in real terms over 25 years — and this year it's facing another cut. In this episode, Jamie Preston sits down with Your Health CEO Matt Staub, just back from Capitol Hill, where he spent a record-setting 95-degree day meeting with seven legislative offices to advocate for physicians, providers, and the patients they serve across rural South Carolina, Georgia, and beyond. What follows is part field report, part reflection on why preventive primary care saves money and lives — and why we plan meticulously for weddings, retirement, and vacations, but treat our own health with a "call us if something happens" approach. In this conversation: Why a 2.5–5% physician fee cut hits frontline rural practices hardest The bipartisan doctors' caucus and the real appetite for reform Why winning can come from a loss — the Kobe Bryant mindset on process over outcome How a Disney ride (Spaceship Earth) reframes humanity's whole story around communication The case for proactive, team-based primary care over reactive sick visits Press play for a conversation about advocacy, communication, and a simple, powerful idea: the change you need to make starts with you.

At 20 years old, newly arrived from Puerto Rico and trying to build a future in science, Benjamin Suarez Jimenez found himself sitting in front of two senior faculty members accused of plagiarism. He knew the material. He had done the work. His mistake came from failing to cite class notes during an exam because nobody had told him that was expected. In a matter of minutes, he watched what felt like his entire career flash before him.On this episode of Standard Deviation, host Oliver Bogler examines the hidden architecture of academic science through the experiences of Dr. Benjamin Suarez Jimenez, Assistant Professor at the University of Rochester and a neuroscientist studying PTSD, anxiety, trauma, and spatial cognition through virtual reality and video game environments.Benjamin traces his path from Puerto Rico to the mainland United States, through the NIH, Columbia University, and eventually to leading his own laboratory. Along the way, he encountered a series of barriers that had little to do with scientific ability and everything to do with access to unwritten rules. From academic gatekeeping to grant writing expectations, he learned that success in biomedical research often depends on knowledge that never appears in a textbook.Oliver explores how those invisible obstacles shape careers, influence research funding, and determine who gains access to opportunity. The conversation also examines the Justice, Equity, Diversity, and Inclusion Program at the Life Science Editors Foundation, which pairs scientists from underrepresented backgrounds with experienced scientific editors. Through that mentorship, Benjamin transformed a critical grant proposal into a successful pilot award that helped launch an NIH R01 application.The discussion extends beyond one scientist's experience. Benjamin describes helping a former mentee navigate dissertation roadblocks that threatened her graduation, illustrating how institutional bureaucracy can delay careers and discourage talented researchers. Together, they explore the hidden administrative burden, cultural barriers, and bias that many scientists carry alongside their research, and what happens when someone who receives support turns around and opens the door for others.RELATED LINKSLife Science Editors FoundationBenjamin Suarez Jimenez LabDr. Benjamin Suarez JimenezBenjamin Suarez JimenezFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

In this episode of Healthcare Happy Hour, host David Saltzman sits down with Dr. Efrat LaMandre ("Dr. E"), nurse practitioner, author, and healthcare advocate, to discuss the growing issue of medical gaslighting and why so many patients feel dismissed by the healthcare system. Dr. E explores how medical training, system incentives, and communication gaps can contribute to these experiences, while offering practical strategies to help patients advocate for themselves, build the right care team, and navigate healthcare more effectively. The conversation also highlights the role benefit advisors can play in helping consumers find answers and achieve better health outcomes.

This week on the You Are Dope Podcast, Kennedy shares her deeply personal journey of knowing something wasn't right with her health and the frustration of repeatedly being told that nothing was wrong.What followed was years of unanswered questions, self-doubt, and the challenge of advocating for herself when the people she trusted weren't listening.Joining the conversation is Dr. Brandi Sinkfield, a board-certified anesthesiologist, healthcare leader, and founder of Women's Digital Health. She is passionate about helping patients navigate the healthcare system, advocate for themselves, and improve communication with their medical providers—especially when concerns are dismissed or overlooked. Her work focuses on women's health, patient advocacy, and creating better healthcare experiences for all.  Together, we discuss: trusting yourself when something feels off  advocating for your health  navigating difficult healthcare experiences  the importance of being heard  practical ways to speak up for yourself  lessons for patients, families, and healthcare providers This is a conversation about courage, persistence, and the power of trusting your own voice.Because sometimes advocating for yourself isn't optional—it's necessary.

Synopsis: While biotech is increasingly measured by clinical milestones and financial outcomes, Rahul Chaturvedi welcomes two leaders who argue that true success begins and ends with patients. In this deeply personal and inspiring conversation, Mike Raab, President & Chief Executive Officer of Ardelyx, and Laura Williams, Chief Patient Officer, share how empathy, resilience, and patient advocacy have shaped both their careers and the culture of the company they've built. Mike reflects on an unconventional journey that spans pharmaceutical sales, rare disease leadership at Genzyme, venture capital at NEA, and ultimately leading Ardelyx through some of biotech's most difficult challenges—including a Complete Response Letter, massive layoffs, and a historic FDA reversal that resulted in approval without additional clinical trials. Laura shares her path from rural Mississippi to becoming a physician, recounting the transformative patient experience during the HIV epidemic that inspired her move from academia into industry and ultimately into a pioneering Chief Patient Officer role. Together, they explore what patient-centricity truly means beyond corporate slogans, how Ardelyx embedded patient advocacy into the C-suite, and why empathy must be a core competency for biotech leadership. The discussion also dives into clinical trial diversity, commercializing therapies for underserved populations, navigating regulatory adversity, responsible capital allocation, and the future of building enduring biotech companies. It is a powerful reminder that when patients become the North Star, resilience, innovation, and impact naturally follow. Biography: Mike Raab Mike has served as Ardelyx's President and Chief Executive Officer since March 2009. Before Ardelyx, Mike was a partner at New Enterprise Associates (NEA), one of the world's largest and most successful venture capital firms, where he specialized in healthcare investments focusing on the biotechnology and pharmaceutical sectors. Prior to joining NEA in 2002, Mike spent 15 years in commercial and operating leadership roles in the biotech and pharmaceutical industries. He was senior vice president, therapeutics and general manager of the renal division at Genzyme Corporation, a Sanofi company. In this position, Mike launched and oversaw the sales growth of sevelamer, the leading phosphate binder for the treatment of hyperphosphatemia, with over $1.0 billion in worldwide sales in 2013. Mike was also instrumental in the worldwide launch of Genzyme's therapies for Gaucher disease, Ceredase and Cerezyme. Laura Williams, MD, MPH Laura has served as Ardelyx's Chief Patient Officer since 2025, having joined the company in November 2020 as Senior Vice President, Global Therapeutic Strategies and Patient Advocacy. Laura was later promoted to Chief Medical Officer in 2021. Laura is a life science enterprise leader with extensive experience as a pharmaceutical drug developer, healthcare policy advisor, patient advocate, and portfolio strategist. She is an accomplished, results-oriented, physician scientist and board member who is committed to discovering, developing, and commercializing innovative therapies that address unmet medical need. With nearly 30 years of pharmaceutical experience, across all clinical development phases and multiple therapeutic areas, in both large pharma and smaller biotech, Laura has a proven track-record in drug development, as indicated by her leadership and major contributions toward eight drug approvals.

Dr. Sarah Matt trained as a burn surgeon, working in a field where patients arrive with catastrophic injuries and survival depends on speed, skill, and resources. She left the bedside after confronting a limit that medicine does not like to admit. One physician can only see so many people in a day. The system surrounding those patients decides the rest. She moved into health technology, held leadership roles in startups, and built global infrastructure at Oracle to scale care across populations. Then she watched billions of dollars in digital health and AI initiatives stall out when they hit real clinical environments.This episode follows that pivot from surgeon to strategist and back into direct patient care in rural New York, where she now treats uninsured patients, migrant workers, and communities pushed to the margins. The conversation centers on a persistent failure across healthcare systems. Products get built for regulators, executives, and investors instead of the people who use them. The result shows up in failed adoption, broken workflows, prior authorization delays, and rising physician burnout.The discussion cuts through health policy language and lands on lived consequence. The system rewards speed over usability, scale over trust, and compliance over care. Patients absorb the fallout. Physicians carry the liability. The incentives remain intact.RELATED LINKSDr. Sarah MattThe Borderless Healthcare RevolutionThe Clinical RealistJessica FedererSovatoFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

What happens when your body starts to heal, but your mind is still trapped in survival mode? In this episode of hol+, Dr. Taz sits down with Amy Kurtz, certified health coach, patient advocate, speaker, and author "But You Look Fine", for a powerful conversation about chronic illness, Lyme disease, medical gaslighting, nervous system trauma, and what it really means to heal.Together, they explore Amy's 20+ year journey through unexplained pain, chronic symptoms, misdiagnosis, and the search for answers that finally led to a diagnosis of late-stage neurological Lyme disease and co-infections. Amy shares what it was like to be told her labs were normal while knowing something was deeply wrong in her body, and how years of invalidation shaped her relationship with her health, her identity, and her trust in herself.Dr. Taz and Amy also discuss why so many people live in the “gray zone” between sick and well, especially when symptoms are invisible, complex, or hard to explain. They unpack why normal labs do not always mean optimal health, why Lyme disease can be missed for years, and how chronic illness can impact relationships, career, emotional safety, and the nervous system.This conversation offers a grounded and hopeful look at what happens after illness, when the body may be improving but the mind and nervous system are still bracing for the next crash. Amy introduces her concept of Medical Trauma Brain, or MTB, which describes the anxiety, hypervigilance, fear, and survival patterns that can remain after chronic illness, cancer, stroke, chronic pain, or any major health crisis.If you're listening to this and thinking, “I know something is off in my body, but I don't know where to start,” join the Circle here:

In this lively episode of Doc Tales with Cocktails, Dr. May and Tim Hindmarsh tackle everything from bizarre fast-food crimes and questionable healthcare practices to a decades-old vaccine lawsuit making headlines. They discuss a McDonald's employee facing criminal charges after tampering with a customer's food, explore the dangers of social media-fueled decision-making, and break down the legal case of a convicted murderer who argued his life sentence ended when his heart temporarily stopped. The conversation then shifts to a controversial lawsuit involving an experimental RSV vaccine from the 1960s and broader concerns about medical ethics, informed consent, and pharmaceutical accountability. Plus, Dr. May shares a listener-submitted story involving concierge medicine, blood draws at a private residence, and the importance of vetting healthcare providers. As always, expect plenty of humor, candid commentary, and a few unexpected detours along the way. In This Episode A McDonald's employee faces felony charges after contaminating a customer's fries The role social media plays in poor decision-making A prison inmate's unusual legal argument about a life sentence ending after clinical death The history of vaccine-associated antibody enhancement (VADE) A lawsuit involving a 1960s RSV vaccine trial Medical ethics, informed consent, and government research programs Direct-to-consumer pharmaceutical advertising Concierge medicine concerns and "kitchen table" blood draws How to research and verify healthcare providers Listener questions and healthcare transparency Key Takeaways Social media can amplify impulsive decisions with lifelong consequences. Informed consent remains a foundational principle of ethical medicine. Patients should understand where their lab work is processed and how healthcare services are billed. Verifying provider credentials and disciplinary history is easier than ever and can help patients make informed healthcare decisions. Transparency builds trust between patients and healthcare professionals. Resources Mentioned National Provider Identifier (NPI) Registry State Medical Board License Verification Tools LabCorp Quest Diagnostics Connect with BS Free MD Website: https://bsfreemd.com Instagram: https://www.instagram.com/bsfreemd Facebook: https://www.facebook.com/bsfreemd Email: doc@bsfreemd.com 

Severe seizures, nonstop crying, and an exaggerated startle reflex marked the beginning of Elliott's journey with molybdenum cofactor deficiency type A (MOCD type A), an ultra-rare inherited metabolic disorder that can cause devastating neurological damage shortly after birth. After initially being told that Elliott would likely not survive to school age, his family was offered access to an experimental treatment that changed the course of his life. In this episode of On Rare, David Rintell, Head of Patient Advocacy at BridgeBio, and Mandy Rohrig, Senior Director of Patient Advocacy at BridgeBio, travel to England to meet Elliott and his family and hear how they navigated diagnosis, uncertainty, and hope after already experiencing the heartbreaking loss of another child. Geoff and Lucy, Elliott's parents, reflect on the emotional toll of diagnosis, the realities of managing complex medical care at home, and the joy of watching Elliott grow, attend mainstream school, and live life alongside his siblings. Their story highlights the importance of early diagnosis, caregiver resilience, and the life-changing impact of treatment for rare disease families. Dr. Günter Schwarz, Professor of Biochemistry at the University of Cologne and a leading expert in MOCD, provides a medical overview of the condition. MOCD is a rare inherited metabolic disorder caused by the body's inability to produce molybdenum cofactor, which is required for several critical enzymes to function properly. Without it, toxic sulfite builds up in the body, particularly in the brain, leading to severe seizures, neurological injury, and often early death. Dr. Schwarz explains how the condition is inherited, why symptoms begin so early in life, and how targeted treatment can dramatically alter outcomes when started quickly after diagnosis.

In the late 1980s, a child exposed to fallout from the Chernobyl disaster lay in a hospital bed while doctors told his family there were no clear answers and no reliable path forward. Decades later, that same child, Yan Leyfman, walks into exam rooms as a hematology oncology fellow, expected to deliver clarity inside a system that still runs on delay, uncertainty, and institutional self preservation.This episode traces the throughline from early life shaped by radiation exposure and hospice level uncertainty to a career inside academic medicine, translational research, and oncology media. Yan built his identity around survival and usefulness, moving from patient to physician while carrying the memory of what it feels like to sit on the other side of the table. He helped launch MedNews Week during the COVID crisis to push back on misinformation and expand access to medical knowledge, stepping into a public role while still in training.The conversation stays grounded in the friction between personal narrative and system reality. Clinical training demands efficiency, hierarchy, and emotional distance. Cancer care demands time, clarity, and human connection. Those forces collide in real patient encounters where prior authorization delays, insurance barriers, and fragmented care pathways shape outcomes as much as any treatment protocol.Yan speaks openly about mentorship, belonging, and the drive to make meaning out of survival. The discussion pushes further into what the healthcare system actually rewards, what it quietly strips away, and how quickly empathy can erode under institutional pressure. The episode also examines the role of medical media, where education, industry influence, and narrative control often blur together.This is a conversation about identity under construction, about what happens when someone who remembers powerlessness steps into a role that carries authority, and about whether that memory can survive long enough to change anything.RELATED LINKSYan Leyfman on LinkedInYan Leyfman on InstagramSurviving ChernobylFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

What happens when you know something is wrong with your body, but no one seems to be listening? In this episode, Stephanie Mitton sits down with award-winning journalist and host of TVO's Mistreated, Nam Kiwanuka, for a powerful conversation about women's health, medical dismissal, and the gaps in research that continue to impact women across Canada and beyond. Nam shares her personal experience navigating fibroids, chronic anemia, lengthy surgical wait times, and the frustration of advocating for care while trying to show up for her family and career. Together, they explore why women's health has been historically under-researched, how lived experience and evidence can work together, and what women can do to advocate for themselves in a complex health care system. This Episode Covers: Nam's personal health journey and the diagnosis that changed everything Why women are often dismissed or misdiagnosed in health care settings The impact of research gaps on conditions like fibroids, endometriosis, ADHD, migraines, and autoimmune diseases How social media can both help and hinder women searching for health information The importance of self-advocacy and knowing your medical history What femtech is and how innovation is helping address women's health challenges Practical ways women can support change in research, policy, and health care Women's health affects every aspect of our lives, from our careers and families to our confidence and wellbeing. This conversation is a reminder that your symptoms matter, your experiences matter, and your voice matters. Whether you're navigating your own health journey or supporting someone you love, you'll leave this episode with greater understanding and practical ways to advocate for better care. https://www.patreon.com/womendontdothat Instagram - http://www.instagram.com/womendontdothat/ TikTok- http://www.tiktok.com/@womendontdothat Blog- https://www.womendontdothat.com/blog Podcast- https://www.womendontdothat.com/podcast Newsletter- https://www.beaconnorthstrategies.com/contactwww.womendontdothat.com YouTube - http://www.youtube.com/@WOMENdontDOthat How to find Stephanie Mitton: Twitter/X- https://twitter.com/StephanieMitton LinkedIn - https://www.linkedin.com/in/stephaniemitton/ beaconnorthstrategies.com TikTok- https://www.tiktok.com/@stephmitton Instagram- https://www.instagram.com/stephaniemitton/ Interested in sponsorship? Contact us at hello@womendontdothat.com Produced by Duke & Castle Our Latest Blog: https://www.womendontdothat.com/post/i-don-t-do-resolutions-i-do-this-perfect-for-busy-women Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Matthew Zachary is a brain cancer survivor, healthcare advocate, founder of Stupid Cancer and We the Patients, and host of Out of Patients. In April 2026, he returned to the stage at Merkin Hall near Lincoln Center for his first solo public piano concert in almost 22 years while launching his debut book, We the Patients: Understanding, Navigating, and Surviving America's Healthcare Nightmare.What unfolded became far larger than a concert.Over 2 hours, survivors, clinicians, advocates, nonprofit founders, journalists, pharmaceutical sponsors, and healthcare insiders gathered in one room to reflect on 30 years of survivorship, institutional failure, accidental advocacy, and the emotional afterlife of cancer. The evening moved through original piano performances, live chapter readings, and deeply personal conversations about infertility, disability, financial toxicity, insurance denials, grief, burnout, and what happens when patients spend decades navigating systems designed around transactions instead of continuity.Guests including Wendell Potter, Maimah Karmo, Craig Lustig, Shelly Fuld Nasso, Tamika Felder, and others reflected on how the modern cancer advocacy movement emerged largely because patients built parallel systems where healthcare infrastructure failed to meet human needs. The conversation explored how prior authorization, reimbursement incentives, administrative fragmentation, and institutional distrust continue shaping the patient experience across oncology and survivorship.The performance also marked a deeply personal milestone. After brain cancer compromised his left hand at age 21, Zachary spent 6 months rehabilitating both hands to return to public performance for the first time in over 2 decades. The result became part concert, part civic gathering, and part historical record of a generation of survivors who refused to disappear quietly.RELATED LINKSMZLIVE Official WebsiteMZLIVE YouTube VideoFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

In this episode of Marrow Masters, we speak with Stephanie Chuang, founder and chief storyteller of The Patient Story. Stephanie shares how her life changed at 31, just two months before her wedding, when she was diagnosed with lymphoma. At the time, she was working as a TV news reporter in San Francisco and had been explaining away symptoms like fatigue, bloating, and a strange cough. A same day doctor's visit led to blood work, an x-ray, an emergency CT scan, and then the call that confirmed lymphoma. Stephanie talks about the shock of diagnosis and the fear that followed. She also shares how much it mattered to have people around her who understood how to navigate the health care system. A family friend who was a doctor helped her get into care quickly, showed her what steps to take, and became a human compass during a frightening time. That experience stayed with her. It helped shape the reason she later created The Patient Story, so others would not have to feel so alone after diagnosis. The conversation then moves into survivorship and the emotional whiplash that can happen when treatment ends. Stephanie explains that hearing “no evidence of disease” was a huge relief, but it did not mean life went back to normal. She felt grateful, but she also felt lost. Her identity as a journalist, fiancé, daughter, sister, and busy person had been shaken. She could not simply return to the same pace or the same version of herself. Stephanie also talks about scanxiety and the surveillance cycle. She describes how difficult it can be to move from frequent monitoring to longer gaps between appointments. Graduating from three month checks to six month checks can feel like progress, but it can also feel scary. She explains that giving herself permission to feel anxious, without adding shame, helped her cope. We also talk about the phrase “the new normal” and the late effects that can follow intense treatment. Stephanie shares that survivorship requires more support than many people realize, especially when patients move from oncology care back to primary care. She emphasizes the importance of meeting people where they are, validating their fears, and helping them feel less alone. The episode closes with Stephanie's message to newly diagnosed patients: you are not alone, your questions matter, and you deserve to speak up in the doctor's office. The Patient Story exists to share honest, hopeful stories that help people find connection, information, and courage. Links: The Patient Story: https://thepatientstory.com/ Bag It Cancer: https://bagitcancer.org/ Escape to THRIVE: https://escape4advocates.org/ Thanks to this season's sponsors, Incyte and Sanofi. (00:00) Intro (01:34) Stephanie begins her cancer story (06:01) Navigating the medical system with help from a doctor friend (07:16) Hospital testing, biopsy, and the idea behind The Patient Story (08:35) Moving into survivorship (10:14) Identity, work, and life after cancer (13:03) Scanxiety and the surveillance cycle (16:31) Survivor guilt and transitioning back to primary care (17:47) Identity loss after leaving a news career (23:21) The phrase “the new normal” (26:36) Meeting people where they are in survivorship (28:16) The power of patient storytelling (28:41) Caregivers, care partners, and family support (30:20) Advice for newly diagnosed patients National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/Check out our valued nbmtLINK resource books, some for sale, some free as downloadable, https://www.nbmtlink.org/shop/nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment. It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK. Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.The Marrow Masters Podcast is produced by JAG Podcast Productions: https://jagpodcastproductions.com/ Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

In December 1996, a 37 year old pharmaceutical executive sat in a Borders bookstore reading medical textbooks on the floor, trying to understand a disease she had never heard of. Multiple myeloma carried a three year prognosis. Her daughter was 18 months old. Her father had just died of cancer. Within weeks, she pushed her doctors to say the quiet part clearly. This would likely end her life before her child entered kindergarten.Kathy Giusti refused to accept passive survival. She built a plan while the system offered fragments. She interviewed oncologists and fertility specialists at the same time. She pursued IVF to have a second child while preparing for treatment. She stayed employed to keep insurance coverage. Every decision carried financial, medical, and emotional risk.That same urgency exposed a deeper failure. Cancer research moved slowly. Academic centers guarded data. Clinical trials lacked coordination. Patients entered a system that demanded compliance without providing clarity. Giusti responded by building the Multiple Myeloma Research Foundation, not as a support group, but as an operating engine to accelerate drug development, fund research, and force collaboration across institutions.This episode tracks the tension between individual agency and systemic failure. Giusti describes how patients navigate diagnosis, insurance barriers, and fragmented care in real time. She explains how data, genomics, and clinical trials reshape cancer treatment while still leaving patients responsible for decisions they are not trained to make. She addresses disparities in access, the limits of early detection, and the reality that progress in oncology often depends on speed, funding, and alignment of incentives.The conversation moves between lived experience and structural critique. It names the cost of delay, the burden placed on patients to act as their own advocate, and the tradeoffs required to push a system forward that still protects itself first.⸻RELATED LINKSKathy GiustiMultiple Myeloma Research FoundationFatal to FearlessAmerican Society of Hematology⸻FEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Meredith Weiss joins the podcast to discuss a study that was presented in the inaugural Gorlin Syndrome Alliance Round Table session at the Society for Investigative Dermatology (SID) meeting. Meredith is the Executive Director for the Gorlin Syndrome Alliance.Novel PTCH1 Variants in Gorlin Syndrome Identified through Genomic Analysis of 118 Patients. The authors of this study are:Ryan Kern*1, Amy Xiong1, Qianqian Wang2, Philip Beachy2, Jean Tang11Department of Dermatology, Stanford University School of Medicine, Stanford, California, United States; 2Department of Developmental Biology, Stanford University School of Medicine, Stanford, California, United StatesPlease click here for more information about the Gorlin Syndrome Alliance.

At 19, Shlomit woke up unable to speak. The right side of her body went numb. An emergency room sent her home and called it stress. That moment did not end in a diagnosis that changed policy or triggered reform. It sent her into a decade long pursuit of understanding how the brain fails language and how the healthcare system fails patients who cannot advocate for themselves.Shlomit trained as a speech language pathologist and spent years inside acute care hospitals and ICUs, performing endoscopies and treating patients with brain injury, stroke, and dysphagia. She watched medical teams rotate in and out, deliver dense updates, and leave families nodding without comprehension. She stayed behind and translated. Every day, patients told her she was the only one who explained what was happening. That gap is not an accident. Hospital systems optimize for throughput, not understanding. Patients move through beds based on cost, not readiness. Discharge planning becomes a financial decision wrapped in clinical language. A stay under 48 hours can shift the insurance burden dramatically, leaving patients exposed to higher out of pocket costs. Shlomit left the system and built Patient Path NYC, a private patient advocacy service. She now spends 15 to 20 hours a week per client reading charts, coordinating care teams, and translating medical decisions into plain language. Her work sits in the uncomfortable space between healthcare policy and lived experience. Families pay out of pocket to understand their own care. Hospitals benefit from the clarity she provides while maintaining the same structural incentives that created the confusion.This conversation tracks the human cost of fragmented care, the economics behind discharge decisions, and the quiet reality that patients who cannot communicate clearly often lose control of their own outcomes.RELATED LINKSShlomit LibertyShlomit Liberty on LinkedInPatient Path NYCBoard Certified Patient AdvocateFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

In 2020, developmental biologist Dr. Crystal Rogers drove the country roads outside Davis, California crying between grant rejections, wondering whether she was about to lose her lab, her career, and the scientific future she had spent years building. She had already done what academia tells young scientists to do. She earned the credentials. She landed a faculty position at UC Davis. She built a lab. Then the real test began.On this episode of Standard Deviation, Dr. Oliver Bogler examines the unspoken rules that determine which scientists survive academic research and which quietly disappear from it. The conversation follows Crystal Rogers and cancer biologist Dr. Michelle Mendoza as they collide with the “Hidden Curriculum” of biomedical science: the unwritten rhetoric, institutional signaling, and grant writing strategies that often decide who receives funding, tenure, and long term stability.Michelle Mendoza entered a tenure track position at the Huntsman Cancer Institute while raising 3 children, navigating a divorce, and trying to secure major NIH funding during COVID. What looked like objective scientific review turned out to depend heavily on persuasion, presentation, and insider fluency. Established researchers could promise massive research agendas based on reputation alone. Junior investigators faced a completely different standard.Oliver traces how the Life Science Editors Foundation and its JEDI program intervened by pairing scientists with former editors from journals including Cell and Nature. The work had little to do with commas or grammar. Editors challenged logic, structure, and scientific framing before grant reviewers could destroy an application in public.Both researchers eventually secured career defining grants. One realized she would keep her job and not have to move her family. The other celebrated by ordering a personalized “DEV BIO” license plate and driving through Davis blasting nineties hip hop and Beyoncé.The episode exposes how biomedical research funding rewards institutional fluency as much as scientific talent, and how hidden systems inside academic medicine continue shaping who gets to stay in science long enough to make discoveries.RELATED LINKSDr. Crystal Rogers LinkedInDr. Crystal Rogers Faculty PageDr. Crystal Rogers LabDr. Michelle Mendoza LinkedInDr. Michelle Mendoza Faculty PageHuntsman Cancer Institute Mendoza LabLife Science Editors FoundationFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

In 2008, Katy Talento walked away from Capitol Hill and into a Catholic convent. Within a year, she walked out. Within another decade, she sat inside the White House shaping health policy. Somewhere in between, she got labeled “infertile” after a single cycle of testing and spent years believing it.That label stuck. The pain that came before it never got investigated. Doctors offered birth control and moved on. No one asked why her body was struggling. No one followed the thread.Talento built her career inside the very systems she now critiques. She worked on federal health policy, global disease programs, and later advised the Trump administration on healthcare reform. She helped advance price transparency rules in a system where hospitals can still list 457 different prices for the same service.Then she left.Now she builds employer health plans that bypass insurers, PBMs, and traditional networks. Her approach replaces insurance contracts with direct payment, nurse navigators, and cost sharing models that promise simplicity but raise hard questions about risk and protection.This conversation sits in that tension.Talento describes a healthcare system shaped by layered incentives, where insurers, hospitals, and intermediaries profit from complexity. She argues that employers hold the leverage to disrupt it. The host pushes on what happens when patients fall outside those structures, when contracts disappear, and when community based models fail.The episode moves through infertility, misdiagnosis, insurance design, and the mechanics of employer sponsored care. It tracks how policy decisions made in Washington ripple into exam rooms, billing departments, and family lives.It also confronts a harder truth.Even insiders who understand the system can still get caught in it.RELATED LINKSAllBetter HealthKaty TalentoThem Before UsAn Arm and a LegRelentless Health ValueFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

What if the most important thing you did today wasn't on your task list? In the final episode of Your Health University's Values Series, host Jamie Preston brings back the full Patient Experience Team — Jennifer Kistler, Kim Metz, Whitney Myers, Carlos Heyward, and Rebecca Dillard — to explore the value that brings every other one to life: Service. Not the idea of it. The real, daily, roll-up-your-sleeves version that shows up in 60 extra seconds, one extra phone call, and the moments when you decide not to leave someone when they need you most. What you'll hear in this episode: Whitney's story of refusing to leave a patient on his worst day — and what true service looks like when the moments count most Carlos's creative solution for a patient in Charleston who keeps falling — and the phone call she made just to say thank you Rebecca's respiratory therapists who change cat litter boxes and wheel trash cans to the curb — because they noticed, and they could Kim's ICU story: braiding the hair of ventilated patients who couldn't do it themselves, because I would want someone to do that for me Jamie's deeply personal account of his wife's breast cancer diagnosis — and the profound difference between a healthcare team that says "this is what you need to do" and one that asks "what do you think?" Carlos's challenge to every listener: don't just adopt these values at work — make them yours Service is the reason you got into this. It's the thing that makes the hard days worth it and wakes you up the next morning ready to go again. Press play — and let this episode remind you exactly why what you do matters. www.YourHealth.Org

In a wooded campground cabin in the early 2000s, 19 year old Ben Unger stood in the doorway and watched 20 naked men form a circle around a crying teenager. A counselor held up two tangerines and shouted, “These are your balls.” The exercise claimed to cure same sex attraction by forcing young men to “reclaim” their masculinity from overbearing mothers. Phones had been confiscated. Parents had paid thousands of dollars. Religion supplied the script. Pseudoscience supplied the props.Ben had grown up in an Orthodox Jewish community in Brooklyn and later studied in Israel to become a rabbi. When he admitted he felt attracted to men, rabbis told him to eat 7 figs a day, immerse in a ritual bath 5 times daily, or marry a woman and trust that “if there's friction, it works.” At 19, he entered conversion therapy through an organization called Jews Offering New Alternatives to Homosexuality, known as JONAH. He left with depression, religious trauma, and 6 months of silence toward the mother he had been taught to blame.Years later, represented by the Southern Poverty Law Center, Ben helped sue JONAH for consumer fraud in a landmark New Jersey case. The argument centered on evidence, not theology. Sexual orientation cannot be changed. The jury deliberated for 3 hours and ruled against the organization. The verdict helped reshape how states regulate conversion therapy and protect minors from psychological harm disguised as treatment.Today, Ben runs Buff Personal Training in New York City, a gym built on autonomy, mental health, and self respect. His story traces the arc from institutional control to self authorship. The conversation examines religion, LGBTQ rights, conversion therapy, consumer protection law, and the lasting cost of being told your identity is a disorder.RELATED LINKSBen Unger on LinkedInBen Unger on InstagramBUF Personal TrainingSouthern Poverty Law CenterJONAHFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

What does it look like when life changes in an instant—and a family learns to navigate the unimaginable? In this episode of Inside the Children's Hospital, Katie Taylor sits down with Marah, a mom of four, who shares her daughter Abigail's journey after a cardiac arrest at just nine days old. What began as a healthy twin pregnancy quickly shifted into a complex medical path involving a NICU stay, life support, and long-term care needs. As Marah and her husband entered the world of medical parenting, they faced fear, uncertainty, and overwhelming decisions. Through it all, they leaned on their care team, family support, and each other—learning how to advocate, adapt, and ultimately find moments of joy within the journey. This conversation highlights the realities of raising a medically complex child, the power of community, and how resilience is built over time. You'll hear: What it was like navigating a sudden cardiac arrest in a newborn The early days in the NICU and learning to care for a medically complex child How Marah advocated for family presence and support during hospitalization The transition from crisis to confidence in managing trach and G-tube care How community, connection, and shared experiences shaped their journey The emotional realities of ongoing medical challenges, including epilepsy This is a story of advocacy, growth, and finding strength in the most unexpected places. What You'll Learn in This Episode Why learning CPR and emergency preparedness can be life-saving for families How to advocate for your child and communicate your needs with care teams The role of multidisciplinary care in managing complex medical conditions What life at home can look like with medical equipment and home nursing support How community and peer support impact long-term coping and resilience The importance of asking for help and building a sustainable support system How perspectives can shift from grief to gratitude over time   Key Takeaways Even in the most overwhelming moments, support, advocacy, and connection can carry families forward—and help transform crisis into a new kind of strength.   Connect with Marah Instagram: In Good Complexity Resources Mentioned Emergency Preparedness for Families Infant & Child CPR (American Red Cross) https://www.redcross.org/take-a-class/cpr/performing-cpr/child-baby-cpr Trach & G-Tube Care Resources Feeding Tube Awareness Foundation https://www.feedingtubeawareness.org Building Community & Support Parent to Parent USA https://www.p2pusa.org Trach Support Mom's of Trach Babies https://www.facebook.com/groups/momsoftrachbabies/   Connect with Us Subscribe: Never miss an episode on Apple Podcasts or Spotify. Visit insidethechildrenshospital.com to search stories and episodes easily Follow us on Instagram for updates and opportunities to connect with other parents Download SupportSpot: receive Child Life tools at your fingertips. Leave a Review: It helps other families find us and access our resources! Medical information provided is not a substitute for professional advice—please consult your care team. Pediatric Health, Medical Parenting, NICU Journey, Infant Cardiac Arrest, Medically Complex Child, Children's Hospital, Pediatric Critical Care, Family-Centered Care, Patient Advocacy, Tracheostomy, G-Tube Feeding, Epilepsy in Children, Special Needs Parenting, Caregiver Support, Resilience

I bust through the third wall or whatevs in Episode 10 of TSC Talks 3.0 Research. Dropped the whiteboard til the end. Summed up the 9 episodes and added a bit on the end about CPTSD, TAND and the fact that the entire family system is drawn into the grid as data churnin' emotin' node. Used the Google AI to investigate the theories I had on amplification of TSC by multiple factors for purpose and product and it proved true based on the research plus lived experience thus far.Source Links for Further ResearchI. Rare Disease Advocacy and Funding (Conflicts of Interest)[TSC Alliance: Corporate Policies](https://www.tscalliance.org/about-tsc/corporate-policies/)[TSC Alliance: COVID-19 Vaccine Position Statement](https://www.tscalliance.org/wp-content/uploads/2021/08/TSC-Alliance-COVID-19-Vaccine-Position-Statement-Update-August-2021-FINAL.pdf)[TSC Alliance: Phenotypic Variability Research](https://www.tscalliance.org/tsc-matters/phenotypic-variability-in-tuberous-sclerosis-complex-tsc/)[TSC Alliance: 2024 Talking Points](https://www.tscalliance.org/wp-content/uploads/2024/01/2024-Talking-Points-Final.pdf)[NORD: Mission and Values](https://rarediseases.org/about-us/mission-values/)[NORD: Research Grant Programs](https://rarediseases.org/advancing-research/research-grant-programs/) [EURORDIS: Our Funding](https://www.eurordis.org/who-we-are/our-funding/)[Mass General: Herscot $50 Million Gift](https://giving.massgeneral.org/stories/herscots-make-50-million-gift-to-mass-general)[NEJM: Industry Support for Patient Advocacy](https://www.nejm.org/doi/full/10.1056/NEJMsr1610625)II. Gene Therapy (CRISPR), Risks, and Regulation [FDA: Cellular & Gene Therapy Products](https://www.fda.gov/vaccines-blood-biologics/cellular-gene-therapy-products)[CRISPR-Cas9 Off-Target Effects (Synthego)](https://www.synthego.com/blog/crispr-off-target-editing/)[CRISPR: Genome Engineering Advantages and Limitations (Taconic)](https://www.taconic.com/resources/crispr-genome-engineering-advantages-limitations)[FDA: Regulatory Distinctions for Cell and Gene Therapies (LinkedIn)](https://www.linkedin.com/pulse/fda-vs-ema-key-regulatory-distinctions-cell-gene-therapies-ywzye) [Informed Consent and Clinical Trials (PMC)](https://pmc.ncbi.nlm.nih.gov/articles/PMC2659702/) [Immune Evasion in Engineered CRISPR Enzymes (Broad Institute)](https://www.broadinstitute.org/news/scientists-engineer-crispr-enzymes-evade-immune-system) [The Ethics of Gene Editing (Innovative Genomics)](https://innovativegenomics.org/crisprpedia/crispr-ethics/)III. Vaccines, Toxins, and Environmental Amplification [TSC Drug Market & Prevalence (OpenPR)](https://www.openpr.com/news/3536609/tuberous-sclerosis-complex-drug-market-2034-epidemiology)[Vaccines and the Rise in Pediatric Cancer (The Vaccine Reaction)](https://thevaccinereaction.org/2018/05/is-there-a-link-between-vaccines-and-the-rise-in-pediatric-cancer/) [Study of Vaccinated and Unvaccinated Children (Weston A. Price)](https://www.westonaprice.org/health-topics/vaccinations/chronic-disease-a-study-of-vaccinated-and-unvaccinated-children/#gsc.tab=0)[Role of Environmental Toxins in Epigenetic Dysregulation (PLM Institute)](https://plminstitute.org/plmi-blog/the-role-of-environmental-toxins-in-epigenetic-dysregulation/) [Childhood Vaccination Schedule Explosion (Twitter - NVICLoeDown)](https://twitter.com/NVICLoeDown/status/1687176816774033408) [COVID-19 Vaccine Added to Childhood Schedule (Children's Health Defense)](https://childrenshealthdefense.org/defender/childhood-covid-vaccine-schedule/) [The Role of Environmental Exposures in Genetic Disease (PMC)](https://pmc.ncbi.nlm.nih.gov/articles/PMC4021822/)IV. Alternative and Holistic Approaches[Ketogenic Diet Inhibits the mTOR Pathway (AESnet)](https://aesnet.org/abstractslisting/the-ketogenic-diet-inhibits-the-mammalian-target-of-rapamycin-(mtor)-pathway)[Ketogenic Diet for Epilepsy in TSC (PMC)](https://pmc.ncbi.nlm.nih.gov/articles/PMC5540690/) [Curcumin Inhibits mTOR Activity (ScienceDirect)](https://www.sciencedirect.com/science/article/abs/pii/S0944711318304860)[Natural Treatment for TSC (Inspire Forum)](https://www.inspire.com/groups/tuberous-sclerosis-complex/discussion/natural-treatment-for-tsc/)[Natural Products and Patenting (PMC)](https://pmc.ncbi.nlm.nih.gov/articles/PMC8521639/) [Anti-Inflammatory Living (Holistic Health Code)](https://www.holistichealthcode.com/articles/unlocking-metabolic-health)contact Jill: pjlacy6@gmail.comBecome a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--1666046/support.

Drew Flugstad-Clarke never planned to work in brain cancer. She planned to play Division I soccer at Georgetown. She planned to paint. She even tried investment banking, answering emails at 4am in a cubicle that never slept. Then in June 2022 her father, Jim, was diagnosed with glioblastoma at 57. He died 1 day shy of 7 months later, just before his 58th birthday. His symptoms began with emotion, not seizures. A steady HR executive suddenly cried. His golf game slipped. By the time he entered the hospital for a scan, he did not leave without surgery. A subway poster for a 5K became a lifeline. Drew showed up. She found a community. She later joined the American Brain Tumor Association as Community Manager for the Eastern Region. This conversation walks through anticipatory grief, caregiving in real time, strategic numbness, and what it costs to curate hope when the median survival clock is already ticking.RELATED LINKSDrew Clark Flukestad on LinkedInTopor StudiosAmerican Brain Tumor AssociationGeorgetown University Women's SoccerFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

The dark side of advocacy is that the same social media platforms that help health advocates reach millions can also expose them to relentless trolls, coordinated pile‑ons, and even threats to their safety and careers. Studies of physicians and public‑health advocates show that a large share—sometimes more than half—have been personally attacked online for speaking about vaccines, gun violence, or other health issues, facing abuse that targets not just their ideas but also their gender, race, disability, or identity. What starts as "just comments" can quickly escalate into doxxing, harassment at work, bad‑faith complaints to licensing boards, and a level of stress that leads some advocates to scale back or leave social media altogether, even though their voices are needed to counter misinformation.  In this episode, we'll talk about what that experience looks like from the inside—and how health advocates can set boundaries, document abuse, and use digital safety resources so they're not forced to choose between protecting themselves and speaking up for their communities.

What if the most powerful thing you could do for your patients, your teammates, and your own career is simply to say: I made a mistake? In this episode of Your Health University, host Jamie Preston is joined by the Your Health Patient Experience Team — Jennifer Kistler, Kim Metz, Whitney Myers, Carlos Heyward, and Rebecca Dillard — for one of the most honest conversations in this Values Series yet: a deep dive into integrity. Not the word on the wall, but the daily practice of accountability, consistency, and courage that defines who we really are. What you'll hear in this episode: Why fear is the single biggest barrier to integrity in healthcare — and what leadership must do about it The real-time story of Rebecca owning a patient complaint oversight at 5:45 AM, and why it made all the difference Whitney's powerful reframe: integrity isn't just doing the right thing when no one's watching — it's consistency, whether it's easy or hard Jennifer's insight on how strong patient-provider relationships reduce malpractice suits — and why that starts with honesty The unforgettable story of a million-dollar mistake, a resignation letter, and a CEO who said: "Why would I let you go? I just spent a million dollars training you." Integrity matters here. At Your Health, it's not a policy — it's a promise. Press play and find out what it looks and feels like when an entire team commits to living it every single day. www.YourHealth.Org

Did you know that a loss of smell or taste can be an early indicator of Parkinson's, Alzheimer's and other dementias? And in an environment where smell and taste disorders are underdiagnosed, underfunded, and often dismissed, how can an association step in to educate patients, influence research, and push for better care?In this episode of Associations Thrive, host Joanna Pineda interviews Pamela Silberman, Co-Founder, Board Member, and Treasurer of the Smell and Taste Association of North America (STANA). Pamela discusses:How STANA is the first patient organization in the United States, Canada, and Mexico focused on people living with smell and taste dysfunction.The many causes of smell and taste disorders, including congenital conditions, infections, allergies, traumatic brain injuries, sinus issues, aging, and COVID-19.How millions of people are affected by smell and taste dysfunction.Pamela's personal journey after permanently losing her sense of smell following a sinus infection, and how that experience led her to help found STANA.Why STANA advocates for routine and universal smell and taste testing, both to improve diagnosis and to identify links to other conditions such as Parkinson's, Alzheimer's, and other dementias.How smell and taste dysfunction can affect mental health, nutrition, safety, social confidence, and overall quality of life.How STANA supports patients through education, virtual community, programming, and practical conversations about cooking, nutrition, texture, and adapting to flavor loss.How STANA is pushing for more patient-centered research by training patients to serve as research partners, not just research subjects.References:STANA Website

Janine Durso spent 30 years inside pharmaceutical advertising shaping healthcare narratives before becoming a belief strategist and founder of The Believist. In November 2024, during a routine Zoom coaching session, she felt what she called a sharp, terrible pain in the right side of her head. Within hours she was in surgery for a ruptured brain aneurysm. She does not remember the ambulance, the ICU, or the first weeks that followed. She spent 5 weeks in intensive care, then 10 days relearning how to walk, calculate simple change, and manage basic cognition. Doctors later placed a stent and continue monitoring a second unruptured aneurysm.This episode traces the moment she told her husband something broke in my brain, the 14 days doctors called touch and go, and the slow mental rebuild that followed. It also examines insurance barriers that require 2 direct relatives with aneurysms before screening coverage, and why she now lobbies in Washington for change.RELATED LINKSJanine DursoThe BelievistBrain Aneurysm FoundationWhite Plains HospitalDr. Jared CooperFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Most providers interrupt their patients within 18 seconds. What if the next few minutes of silence could tell you more than the next hour of testing? In Part 2 of the Your Health Values Series, Jamie  sits down again with members of the Your Health Experience Team — Rebecca, Jennifer, Whitney,  and Carlos — to go beneath the surface of "patient-centered care" and look at what empathy really demands in the pressured, everyday moments of healthcare. This isn't a conversation about being nice. It's a conversation about seeing people — patients, families, and colleagues — for everything they're carrying, even when they're hiding it behind a smile. In this episode: Why empathy is officially non-negotiable at Your Health — and what that looks like in practice The difference between emotional empathy and "empathetic sternness" (and why both save lives) How to recognize when a patient or colleague is carrying something deeper than their symptoms The real threat of empathy fatigue — and how to keep giving without burning out The two "holy times" in healthcare where empathy matters most What patients actually say when they feel truly seen If you've ever wondered whether the extra 60 seconds is worth it, this episode will show you why it's everything. Press play — and then try it on your very next interaction. www.YourHealth.Org

Rebecca Benghiat holds a JD, passed the bar, and skipped corporate law to build mental health systems instead. She now serves as Chief of Staff and Head of Impact at Inner Foundation, where she helps direct capital toward emerging adults ages 18 to 30 and asks a hard question every day: Is this actually working?In this conversation, she dismantles the myth of easy fixes. She explains why mental health measurement resists clean metrics, why a PHQ 9 score starts a conversation but never finishes one, and why “scale” often flatters institutions more than it helps people. She breaks down how impact investing shapes care delivery, why schools need networked systems not slogans, and why friction might be developmentally necessary.The stakes are real. Vulnerable families navigate snake oil, glossy apps, and pay to play algorithms while carrying the burden of choice in crisis. Benghiat lives inside that complexity and refuses to simplify it.RELATED LINKSRebecca BenghiatInner FoundationAspen Ideas HealthThe Jed FoundationFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

At age 12, Dr. Chrystal Starbird stood by a pond after turning her mother in to the police. She watched tadpoles and fish move beneath the surface and found a strange kind of order. Science became her refuge long before it became her career. Years later, she built that refuge into a profession. She now serves as an Assistant Professor at the University of North Carolina, studies structural biology tied to cancer and Alzheimer's disease, and won Cell's first Rising Black Scientist Award in 2020. On paper, she fits the model of success. In practice, she had to fight for basic access at every stage.Conference travel required upfront cash she did not have. Networking favored pedigree over merit. Mentorship often depended on who knew your name in the room. Chrystal learned those rules, then chose to break them open for others.Oliver Bogler examines what Chrystal calls the advocacy tax. She has delivered over 70 invited talks. Nearly 40 percent focus on equity, mentorship, and policy. Academic reward systems do not count that labor toward tenure. She still does it.Through her leadership at the Life Science Editors Foundation, Chrystal helped build the JEDI program, which pairs underrepresented scientists with editors from journals like Cell and Nature. The program has supported over 100 awardees with more than 1,000 hours of mentorship. This episode exposes how biomedical science rewards output while ignoring the work required to make the system accessible. It also shows what happens when the people most affected refuse to step back.RELATED LINKSDr. Chrystal StarbirdStarbird LabLife Science Editors FoundationJEDI ProgramFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

At 19, Jansher Naim went from sharp stomach pain to a Stage 4 fibrolamellar diagnosis that few doctors see and even fewer young adults survive. He pushed through 41 rounds of chemotherapy, a Whipple surgery, and months of isolation while his friends kept moving through normal college life. In the studio, Jansher sits beside his mother Sadia Siddiqui, who refused early defeat and helped overhaul his care team when the first plan offered little optimism. Now a Computer Science student at Columbia, Jansher lives in the uneasy space between remission and risk, managing fertility decisions, travel for ongoing care, and the strange pressure to look fine at 22. Together they describe what it takes to grow up fast inside a system that rarely knows what to do with young adults who refuse to disappear.RELATED LINKSJansher NaimSadia SiddiquiFibroFighters FoundationColumbia UniversityFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Jessica Federer built her career inside the rooms where science, money, and power collide. As the first female Chief Digital Officer at Bayer, she helped steer a 120,000 person global company through the rise of digital medicine while confronting a harder truth: women were excluded from U.S. clinical trials until 1993. In this conversation, she explains how decades of “first in man” research shaped drug development, why women experience side effects at nearly 2x the rate of men, and how guidance on sex based differences did not arrive from the FDA until December 2025. She shares what it means to sit on a Yale Institutional Review Board, why clinical trial stipends over $3,000 get taxed, and why she believes participants deserve tax credits instead. From GLP 1 profits to $40,000,000 women's health funds that barely move the needle, this episode names the gaps and the opportunity hiding inside them. RELATED LINKSJessica Federer on LinkedInJessica Federer on InstagramYale School of Public HealthHealth of Women Investor SummitFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Monique Gore Massey spent 2.5 years cycling through New York City emergency rooms while her body shut down. Fevers hit 105. Her weight dropped from 122 pounds to 72 in 3 months. Hair fell out in clumps. No one ran an ANA test. Doctors blamed stress, old sports injuries, migraines. When a physician finally named it lupus, she added that she hoped it was not. Months later, Monique heard the words “get your affairs in order.”In this episode, Monique details living with lupus nephritis, pericarditis, fibromyalgia, and the daily math of survival. She recounts arriving at a patient conference shortly after coming off crutches and requesting elevator access for support, only to face resistance at a health summit that claimed to center patients. She breaks down what it costs when industry extracts lived experience for free and calls it engagement. Listeners will hear what invisible illness looks like in real time, how bias delays diagnosis, and why advocacy without strategy leaves patients exploited instead of respected.RELATED LINKSMonique Gore MasseyLupus Foundation of AmericaFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.