Podcasts about Patient advocacy

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Best podcasts about Patient advocacy

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Latest podcast episodes about Patient advocacy

OffScrip with Matthew Zachary
Jace Beats Cancer

OffScrip with Matthew Zachary

Play Episode Listen Later Jun 16, 2026 54:34


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.

Experiencing Healthcare Podcast
Matt Goes To The Capital

Experiencing Healthcare Podcast

Play Episode Listen Later Jun 16, 2026 42:14


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.

OffScrip with Matthew Zachary
Standard Deviation S2 E4: The Invisible Load

OffScrip with Matthew Zachary

Play Episode Listen Later Jun 11, 2026 9:51


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.

Healthcare Happy Hour
Medical Gaslighting, Patient Advocacy & Reclaiming Your Voice in Healthcare

Healthcare Happy Hour

Play Episode Listen Later Jun 11, 2026


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.

You are dope! Podcast
Trust Yourself: A Conversation About Self-Advocacy & Healthcare

You are dope! Podcast

Play Episode Listen Later Jun 10, 2026 32:58


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.

Biotech 2050 Podcast
Ardelyx Leaders Mike Raab & Laura Williams on Building Biotech Around Patients

Biotech 2050 Podcast

Play Episode Listen Later Jun 10, 2026 41:21


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.

OffScrip with Matthew Zachary
Taco Thursday Meets Broken Healthcare: Dr. Sarah Matt

OffScrip with Matthew Zachary

Play Episode Listen Later Jun 9, 2026 42:18


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.

Super Woman Wellness by Dr. Taz
36 Doctors Missed It: Amy Kurtz on Lyme Disease, Medical Trauma Brain & Healing After Chronic Illness

Super Woman Wellness by Dr. Taz

Play Episode Listen Later Jun 9, 2026 57:57


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:

BS Free MD with Drs. May and Tim Hindmarsh
#456 — Breakdown of Kitchen Table Medicine, Drive-Thru Crimes, and 60-Year-Old Secrets

BS Free MD with Drs. May and Tim Hindmarsh

Play Episode Listen Later Jun 8, 2026 45:56


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 

On Rare
“He Gives Everything a Go” — Elliott, Living with MOCD Type A

On Rare

Play Episode Listen Later Jun 3, 2026 31:07


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.

OffScrip with Matthew Zachary
The Chernobyl Kid in a White Coat: Dr. Yan Leyfman

OffScrip with Matthew Zachary

Play Episode Listen Later Jun 2, 2026 42:29


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.

WOMENdontDOthat (WDDT)
226: Why Women's Health Is Still Being Dismissed with Nam Kiwanuka

WOMENdontDOthat (WDDT)

Play Episode Listen Later Jun 2, 2026 52:29


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.

OffScrip with Matthew Zachary
MZ LIVE at Merkin Concert Hall: 30 Years After Cancer

OffScrip with Matthew Zachary

Play Episode Listen Later May 29, 2026 107:24


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.

Marrow Masters
The Patient Story: Stephanie Chuang's Journey from Patient to Storyteller

Marrow Masters

Play Episode Listen Later May 27, 2026 32:56


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.

OffScrip with Matthew Zachary
Fatal to Relentless: Kathy Giusti

OffScrip with Matthew Zachary

Play Episode Listen Later May 26, 2026 49:25


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.

PeDRA Pearls
PeDRA at SID - A Patient Advocacy Perspective

PeDRA Pearls

Play Episode Listen Later May 20, 2026 11:07


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.

OffScrip with Matthew Zachary
Discharge Instructions Not Included: Shlomit Liberty

OffScrip with Matthew Zachary

Play Episode Listen Later May 19, 2026 44:19


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.

OffScrip with Matthew Zachary
Standard Deviation S2 E3: The Hidden Curriculum

OffScrip with Matthew Zachary

Play Episode Listen Later May 14, 2026 11:50


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.

OffScrip with Matthew Zachary
Nun, Done, and Uninsured: Katy Talento

OffScrip with Matthew Zachary

Play Episode Listen Later May 12, 2026 45:52


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.

LTC University Podcast
Our Values Series: Service

LTC University Podcast

Play Episode Listen Later May 8, 2026 34:47


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

OffScrip with Matthew Zachary
Faith, Fraud, and Finding Himself: Ben Unger

OffScrip with Matthew Zachary

Play Episode Listen Later May 5, 2026 52:14


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.

Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist

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

TSC Talks!
TSC Talks 3.0 Research~Episode 10

TSC Talks!

Play Episode Listen Later Apr 29, 2026 35:56 Transcription Available


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.

OffScrip with Matthew Zachary
Defender Energy: Drew Flugstad-Clarke

OffScrip with Matthew Zachary

Play Episode Listen Later Apr 28, 2026 40:12


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.

PodcastDX
The Dark Side of Patient Advocacy on Social Media

PodcastDX

Play Episode Listen Later Apr 28, 2026 57:06


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.

LTC University Podcast
Our Values Series: Integrity

LTC University Podcast

Play Episode Listen Later Apr 24, 2026 30:53


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

Associations Thrive
177. Pamela Silberman, Co-founder, Board Member, and Treasurer of STANA, on Smell and Taste Disorders, Patient Advocacy, and Public Health Awareness

Associations Thrive

Play Episode Listen Later Apr 23, 2026 28:55


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

OffScrip with Matthew Zachary
Not Today, Jesus: Janine Durso

OffScrip with Matthew Zachary

Play Episode Listen Later Apr 21, 2026 46:17


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.

Viewpoints
Changing Cancer Trends & One Olympian's Cancer Story

Viewpoints

Play Episode Listen Later Apr 19, 2026 9:38


Changing Cancer Trends & One Olympian's Cancer Story Cancer is starting to show up in ways doctors didn't expect - earlier, and often without clear warning signs. Through seven-time Olympic medalist Shannon Miller's experience, this story underscores how rising cancer rates are forcing tighter guidelines on screening and the importance of not delaying routine checkups and yearly scans. Guest: Shannon Miller, seven-time Olympic medalist, ovarian cancer survivor & advocate Host: Marty Peterson Producer: Amirah Zaveri         Linktr.ee | Apple Podcasts | YouTube | SpotifyFacebook: @ViewpointsOnlineX: @viewpointsradioInstagram: @viewpointsradioFull ArchiveContact UsAffiliates & National Syndication Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Viewpoints
Culture Crash: The Best Movies That Never Won Best Picture

Viewpoints

Play Episode Listen Later Apr 19, 2026 1:53


Culture Crash: The Best Movies That Never Won Best Picture Some of the most iconic films in history never won Best Picture. This episode looks at how timing, competition and Academy quirks shapes what gets remembered versus what's overlooked. Host:  Evan Rook. Producer: Zack Gaertner   Linktr.ee | Apple Podcasts | YouTube | SpotifyFacebook: @ViewpointsOnlineX: @viewpointsradioInstagram: @viewpointsradioFull ArchiveContact UsAffiliates & National Syndication Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Viewpoints
Why Are People Betting On War? | Changing Cancer Trends & One Olympian's Cancer Story

Viewpoints

Play Episode Listen Later Apr 18, 2026 23:59


Why Are People Betting On War? Prediction markets were initially built to forecast elections and economic moves but they're now being used to bet on war, political upheaval and global instability. As money flows into these high-stakes wagers, the line between informed forecasting and profiting off real-world consequences has merged into one and is now under investigation. Guests:  Ben Schiffrin, director of securities policy, Better Markets Kevin Williams, assistant professor, economics, Occidental College   Changing Cancer Trends & One Olympian's Cancer Story Cancer is starting to show up in ways doctors didn't expect - earlier, and often without clear warning signs. Through seven-time Olympic medalist Shannon Miller's experience, this story underscores how rising cancer rates are forcing tighter guidelines on screening and the importance of not delaying routine checkups and yearly scans. Guest: Shannon Miller, seven-time Olympic medalist, ovarian cancer survivor & advocate   Viewpoints Explained: The Limits Of Recycling In A Plastic World If we spend effort recycling items, it's logical to assume that most of these bottles, cartons and boxes will be recycled and reused. However, for plastic, this is rarely the case. We talk about the plastic crisis and why it's important to cut down on the plastic you use in your daily life.   Culture Crash: The Best Movies That Never Won Best Picture Some of the most iconic films in history never won Best Picture. This episode looks at how timing, competition and Academy quirks shapes what gets remembered versus what's overlooked. Linktr.ee | Apple Podcasts | YouTube | SpotifyFacebook: @ViewpointsOnlineX: @viewpointsradioInstagram: @viewpointsradioFull ArchiveContact UsAffiliates & National Syndication Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

LTC University Podcast
Our Values Series "Empathy"

LTC University Podcast

Play Episode Listen Later Apr 17, 2026 27:38


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

OffScrip with Matthew Zachary
Mental Health, Wicked Problems and Dodgeball: Rebecca Benghiat JD

OffScrip with Matthew Zachary

Play Episode Listen Later Apr 14, 2026 44:00


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.

The Real Truth About Health Free 17 Day Live Online Conference Podcast
2013 statin expansion and the BMJ controversy

The Real Truth About Health Free 17 Day Live Online Conference Podcast

Play Episode Listen Later Apr 13, 2026 18:09


The 2013 statin guidelines expanded use to 56 million adults. Controversy erupted when critics challenged the data, triggering attacks from industry-backed experts. #BMJControversy #StatinDebate #Transparency #HealthTalks

OffScrip with Matthew Zachary
Standard Deviation S2 E2: The Advocacy Tax

OffScrip with Matthew Zachary

Play Episode Listen Later Apr 9, 2026 15:02


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.

Experiencing Healthcare Podcast
Quarter 1 at Your Health

Experiencing Healthcare Podcast

Play Episode Listen Later Apr 8, 2026 42:18


What if the healthcare system your loved one relies on doesn't even know they need help until it's too late — and what would it look like if it did? In this Q1 2026 episode, Jamie Preston sits down with Matt Staub, CEO of Your Health, for a candid and wide-ranging look at how one of the country's largest home-based care providers is navigating the evolving landscape of value-based care, population health, and the human experience at the center of it all. Matt brings his characteristic clarity and heart to a conversation that is equal parts strategy, story, and honest reckoning with what the system still gets wrong. Key topics covered: Why 11% of patients account for 67% of all healthcare spending — and why most of them don't know they're in an ACO The evolution of value-based care: from quality-over-cost to outcomes + patient experience over total costs How Your Health is becoming proactive — not reactive — about falls, readmissions, and high-needs patients The quiet crisis of patient trust: down from 71% in 2020 to just 33% today, and what the correlation means for hospitalizations Real stories: a 79-year-old patient who went from barely existing to living fully — and Matt's own mom, who hasn't fallen since leaving the hospital after her stroke If you work in healthcare, advocate for someone in the system, or simply believe that better is possible — this episode will change the way you see what care can be.

OffScrip with Matthew Zachary
AYA Family Affair: Jansher Naim

OffScrip with Matthew Zachary

Play Episode Listen Later Apr 7, 2026 41:22


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.

Disruption / Interruption
Disrupting Pharma Data: AI That Delivers Insight, Not Overload with Jeffrey Freedman

Disruption / Interruption

Play Episode Listen Later Apr 2, 2026 33:47


Jeffrey Freedman, Executive Vice President at Evolution Health Group, joins Disruption/Interruption to reveal how AI and machine learning are revolutionizing pharmaceutical marketing. For decades, the pharmaceutical industry has been "data rich but insights poor," drowning in information while struggling to connect doctors, patients, and meaningful medical education. Freedman's personal healthcare experiences with his family drove him from Wall Street to pharma, where he now builds platforms that help pharmaceutical companies identify key opinion leaders, cut through the noise, and deliver life-saving information more efficiently. In this candid conversation, he demystifies the pharmaceutical industry, explains why the shift from direct-to-consumer to direct-to-physician marketing matters, and shares how his team is using technology to get treatments to patients faster while reducing costs. Four Key Takeaways: The Pharma Data Problem (9:04) - The pharmaceutical and medical industry is "data rich, but insights poor." Until recently, without AI and machine learning, massive amounts of data were simply growing without being properly analyzed. The ability to extract actionable insights has now shrunk dramatically, transforming how pharma companies can respond to patient needs. Creating a Single Source of Truth (14:50) - Pharmaceutical companies have historically operated on disconnected spreadsheets across different regions and employees, causing critical information loss. Evolution Health Group's SaaS platforms aggregate data into a single source of truth, ensuring insights aren't lost when employees leave and enabling global coordination. From Direct-to-Consumer to Direct-to-Physician (23:53) - Freedman advocates for lowering pharma's reliance on direct-to-consumer advertising and instead focusing budgets on educating physicians. Rather than patients self-prescribing based on commercials, doctors should be equipped with comprehensive education to prescribe the right treatments for the right patients, improving outcomes and reducing confusion. Accelerating the Bench-to-Bedside Pipeline (29:46) - Through AI-powered insights and streamlined communication, the goal is to move products from the research bench to patients faster and more cost-effectively. This technology is already enabling treatments for rare diseases that were previously too expensive to develop, demonstrating how innovation can expand access to care. Quote of the Show (23:48):"Pharma is not this big scary monster that's put out there in the media. It's a bunch of people that really care.” – Jeffrey Freedman Join our Anti-PR newsletter where we’re keeping a watchful and clever eye on PR trends, PR fails, and interesting news in tech so you don't have to. You're welcome. Want PR that actually matters? Get 30 minutes of expert advice in a fast-paced, zero-nonsense session from Karla Jo Helms, a veteran Crisis PR and Anti-PR Strategist who knows how to tell your story in the best possible light and get the exposure you need to disrupt your industry. Click here to book your call: https://info.jotopr.com/free-anti-pr-eval Ways to connect with Jeffrey Freedman: LinkedIn: https://www.linkedin.com/in/jfreedman/Company Website: https://evolutionhealthgroup.com How to get more Disruption/Interruption: Amazon Music - https://music.amazon.com/podcasts/eccda84d-4d5b-4c52-ba54-7fd8af3cbe87/disruption-interruption Apple Podcast - https://podcasts.apple.com/us/podcast/disruption-interruption/id1581985755 Spotify - https://open.spotify.com/show/6yGSwcSp8J354awJkCmJlDSee omnystudio.com/listener for privacy information.

OffScrip with Matthew Zachary
First in (Wo)Man: Jessica J. Federer

OffScrip with Matthew Zachary

Play Episode Listen Later Mar 31, 2026 41:35


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.

Rebel Talk
Navigating the Emotional Journey of a Breast Cancer Diagnosis (Part 2) with Dr. Beverly Huang and Dr. Michelle Peris

Rebel Talk

Play Episode Listen Later Mar 31, 2026 69:45


FREE RESOURCE:  Try our Cyclical Nourishment Guide: https://rebeltribe.thrivecart.com/cyclical-living-nutrition/   In this conversation, Dr. Beverly Huang shares her personal journey through breast cancer, including her diagnosis, treatment options, and the emotional and physical challenges she faced.  The discussion highlights the importance of being informed and making empowered decisions regarding health care, particularly in the context of breast cancer treatment.  Dr. Huang emphasizes the significance of storytelling and community support in navigating such a life-altering experience.  She shares her journey through multiple surgeries, including a mastectomy and reconstruction.  She discusses the complexities of making surgical decisions, the emotional challenges faced during recovery, and the importance of understanding different reconstruction options.  The conversation highlights the personal nature of these decisions and the impact they have on body image and self-perception. Dr. Huang emphasizes the need for support and preparation for the realities of post-surgery life, as well as the lessons learned from her experiences.  In this conversation, Dr. Huang shares her journey through breast cancer treatment, emphasizing the importance of mobility, rehabilitation, and early detection.  She discusses her experiences with physical therapy, the significance of patient advocacy, and the creation of educational resources for women.  The dialogue highlights the power of storytelling in health education and the need for women to take charge of their health decisions.   Takeaways Dr. Beverly's journey began as a way to process her thoughts out loud. She discovered her breast density category was higher than she initially thought. The importance of being informed about breast cancer and treatment options. Surgery day was a long process, but she felt cared for by her medical team. Understanding the different types of breast cancer is crucial for treatment decisions. Mastectomy options include lumpectomy, single, or double mastectomy. The decision-making process is highly individual and influenced by personal circumstances. Efficiency in treatment was a significant factor for Dr. Beverly. Reconstruction options vary and can be tailored to individual needs. Community support and storytelling play a vital role in healing.  Recovery from surgery can be a complex decision-making process. Choosing between implants and going flat involves weighing personal desires and risks. Understanding the different reconstruction options is crucial for informed decisions. The emotional impact of surgery can lead to feelings of vanity and self-doubt. Post-surgery adjustments can be challenging, both physically and emotionally. Support from healthcare professionals can make a significant difference during recovery. It's important to prepare for unexpected challenges after surgery. Physical strength and fitness can aid in recovery from surgery. Women have diverse experiences and feelings about their bodies post-surgery. Sharing experiences can help others navigate similar journeys. Post-surgery mobility is crucial for independence. Manual lymphatic drainage significantly aids recovery. Rehabilitation should focus on gentle activation and mobility. Creating educational resources empowers women in their health journey. Early detection of breast cancer can lead to better treatment options. Patient advocacy is essential in navigating healthcare decisions. Women should be proactive about their health screenings. Storytelling can effectively communicate important health messages. Support systems play a vital role in recovery. Healthcare professionals need to provide accurate information for informed consent.   Chapters 00:00 Introduction and Personal Connection 03:31 Dr. Beverly's Journey with Breast Cancer 11:45 Surgery Day Experience 16:40 Understanding Breast Cancer Types and Treatment Options 23:36 Decision-Making in Mastectomy and Reconstruction 27:46 Navigating Surgical Decisions 29:34 Understanding Reconstruction Options 32:45 The Emotional Journey of Surgery 36:50 Post-Surgery Realities and Adjustments 42:00 Lessons Learned from Recovery 48:13 Post-Surgery Mobility and Independence 51:07 Rehabilitation and Physical Therapy Insights 54:14 Navigating Recovery and Future Plans 01:00:03 The Importance of Early Detection and Patient Advocacy 01:05:03 Empowering Women Through Shared Experiences   Stay Wild.  Connect with Dr. Beverly Huang on INSTAGRAM Connect with Dr. Michelle Peris on INSTAGRAM FREE RESOURCE:  Click the link and see if the SHED METABOLIC RESET PROGRAM is a good fit for you!  This episode is brought to you by: www.MichellePeris.com Ready to reclaim your Wild? JOIN THE WAITLIST Learn more about The Poppy Clinic: www.poppyclinic.com Is Naturopathic Medicine for you: LEARN MORE HERE Take our HORMONE QUIZ Are you a clinician looking for more impact? START HERE

On Rare
On Rare: Arielle's Long Diagnostic Journey

On Rare

Play Episode Listen Later Mar 27, 2026 46:43


Seizures, incorrect diagnoses, and years of unanswered questions shaped Arielle's journey with autosomal dominant hypocalcemia type 1 (ADH1). ADH1 is a rare genetic condition in which the body is unable to accurately sense blood calcium levels, leading to hypoparathyroidism. Although she grew up aware that her calcium levels were low, she did not receive a formal diagnosis until age 16, when a severe calcium crash led to a seizure and ultimately revealed the underlying cause. Years later, when her young son Sebastian began experiencing seizures, Arielle recognized familiar warning signs of abnormal calcium levels. Despite a known family history of abnormal calcium levels, his symptoms were initially misdiagnosed, resulting in repeated hospital visits and increasing concern, until genetic testing for hypoparathyroidism ultimately confirmed a diagnosis of ADH1. In this episode of On Rare, David Rintell, Head of Patient Advocacy at BridgeBio, and Mandy Rohrig, Senior Director of Patient Advocacy at BridgeBio, speak with Arielle about navigating life with ADH1 and advocating for answers. She shares the realities of managing a condition that can quickly become life-threatening, from muscle spasms and seizures to hospitalizations and kidney complications, while raising a family and pushing for a diagnosis. Her story highlights the importance of persistence, listening to one's own instincts, and continuing to ask questions when something doesn't feel right, while  underscoring the power of a family coming together to find answers to a condition that has affected generations. Dr. Scott Adler, Chief Medical Officer of BridgeBio affiliate Calcilytix and a nephrologist, provides a medical overview of ADH1. Abnormal calcium levels can cause muscle spasms, and severe seizures, and painful muscle contractions known as tetany. About 80% of ADH1 cases are usually inherited in an autosomal dominant pattern, meaning they can be passed down from one affected parent. The remaining cases occur spontaneously, with no family history of the condition. ADH1 is currently managed with oral calcium and active vitamin D supplementation, although maintaining stable levels is challenging and may lead to complications over time.  

OffScrip with Matthew Zachary
"But You Look Great" with Monique Gore-Massey

OffScrip with Matthew Zachary

Play Episode Listen Later Mar 24, 2026 50:17


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.

OffScrip with Matthew Zachary
Not Today, Life: Teresa Baglietto

OffScrip with Matthew Zachary

Play Episode Listen Later Mar 17, 2026 40:39


Teresa Baglietto has lived through the kind of compounded harm that exposes how thin the safety net really is. In this episode she walks through a life shaped by medical neglect, personal violence, and the exhausting labor of self advocacy. She nearly died after a C section when hospital staff failed to confirm she had urinated before discharge, spending 15 days hospitalized and separated from her newborn while facing the possibility of permanent damage. In 2013 she discovered an aggressive breast cancer and waited weeks for test results and surgery while administrators stalled and passed responsibility. Care only moved forward after she threatened public exposure. Teresa also speaks openly about surviving rape in high school, losing her father to cancer at age 48 when she was 10, and growing up without reliable adults in the room. She explains why it took 7 years to write her book, why she launched a podcast, and how sales grit becomes a survival tool when patients must fight systems designed to delay them. The conversation stays specific, unsentimental, and grounded in consequence.RELATED LINKSTeresa Baglietto on LinkedInThe Ripple Effect by Teresa BagliettoIn Shock PodcastIn Shock Podcast on InstagramCanvas Rebel interview with Teresa BagliettoFEEDBACKLike 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.

Healthy Mind, Healthy Life
From Diagnosis to Purpose: Debra Griffin on Healing, Faith, and Patient Advocacy

Healthy Mind, Healthy Life

Play Episode Listen Later Mar 13, 2026 26:13


What happens when a life-changing diagnosis becomes the start of a bigger mission? In Healthy Mind, Healthy Life, hosted by Sayan, Debra Griffin shares how her 1989 breast cancer diagnosis reshaped her faith, identity, and view of healthcare. This episode is for anyone navigating illness, uncertainty, or systems that make people feel small. Debra explores self-advocacy, patient data ownership, and why healing is not only about treatment, but also about clarity, dignity, and voice. About the Guest: Debra Griffin is the founder of PPX Tech, a patient-centered health technology concept focused on healthcare access and data ownership. She also wrote a book exploring Judas, faith, and spiritual awakening. Episode Chapter: 00:03:41 – The moment pain became purpose 00:05:16 – A spiritual awakening after diagnosis 00:07:24 – Why Judas became the center of her book 00:10:22 – Breast cancer in 1989 and the turning point 00:12:00 – Why patient advocacy matters so much 00:13:32 – The vision behind PPX Tech 00:19:47 – Staying grounded when progress feels slow Key Takeaways: Advocate for yourself in healthcare decisions. Medical advice matters, but informed questions matter too. Access to healthcare should be a basic human right. Slow progress does not mean your mission lacks value. Protect your mental health while pursuing hard goals. How to Connect With the Guest: Website: https://debragriffin.com/  Book - https://debragriffin.com/books/    Want to be a guest on Healthy Mind, Healthy Life? DM on PM - Send me a message on PodMatch DM Me Here: https://www.podmatch.com/hostdetailpreview/avik Disclaimer: This video is for educational and informational purposes only. The views expressed are the personal opinions of the guest and do not reflect the views of the host or Healthy Mind By Avik™️. We do not intend to harm, defame, or discredit any person, organization, brand, product, country, or profession mentioned. All third-party media used remain the property of their respective owners and are used under fair use for informational purposes. By watching, you acknowledge and accept this disclaimer. Healthy Mind By Avik™️ is a global platform redefining mental health as a necessity, not a luxury. Born during the pandemic, it's become a sanctuary for healing, growth, and mindful living. Hosted by Avik Chakraborty, storyteller, survivor, and wellness advocate. With over 6000+ episodes and 200K+ global listeners, we unite voices, break stigma, and build a world where every story matters.

OffScrip with Matthew Zachary
Standard Deviation S2 EP1: Gatekeepers of the Ivory Tower

OffScrip with Matthew Zachary

Play Episode Listen Later Mar 12, 2026 16:46


Science likes to call itself a meritocracy. Angela Anderson and Brandi Mattson know better. Both served as editors at elite journals (Cell and Neuron), where a single decision could determine who gets tenure, funding, or obscurity. They watched brilliant data get filtered out because the authors did not know the unwritten rules controlled by 5 dominant publishing houses with profit margins higher than Google.In 2020, amid pandemic shutdowns and national reckoning over racial injustice, they co-founded a nonprofit to expose that hidden curriculum. Through the JEDI program, they provide 10 hours of free editorial consulting to scientists who lack access to elite networks. In 1 year alone, 25 awards helped researchers salvage canceled grants, secure NSF career funding, and rebuild careers derailed by rejection.This episode pulls back the curtain on the multibillion dollar publishing engine that profits from taxpayer funded science and reveals who gets heard, who gets sidelined, and how insiders are choosing to redistribute power.RELATED LINKSAngela AndersonBrandy MattsonLife Science EditorsLife Science Editors FoundationCellNeuronNational Science 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.

OffScrip with Matthew Zachary
Neuro Spicy on the Front Line: Dr Pamela Buchanan

OffScrip with Matthew Zachary

Play Episode Listen Later Mar 10, 2026 40:23


Today's episode of Out of Patients welcomes Dr Pamela Buchanan, an emergency room physician with over 20 years inside American medicine who refuses to sugarcoat what the job demands and what it destroys. She worked straight through COVID as protocols changed by the day and deaths arrived faster than anyone could process. She logged 80 to 100 hour weeks. She isolated from her family to avoid bringing the virus home. Over time, survival began to feel negotiable.Dr Buchanan speaks openly about burnout as emotional flatline and about physician suicide as a predictable outcome that leadership prefers to ignore. She describes the ER as the catch all for a broken system and explains why chronic care collapses there by design. She shares the reality of trying to access mental health care while still practicing medicine, calling dozens of therapists, getting nowhere, and spending $10,000 to $15,000 out of pocket just to stay alive and functional.Listeners will hear how neurodivergence shaped her career in emergency medicine, how race and trust intersect inside hospital walls, and why doctors are leaving in waves. This conversation carries clarity, anger, humor, and hard earned truth from someone who stayed long enough to name the damage.RELATED LINKSDr Pamela BuchananStrong MedicineDr Pamela Buchanan on LinkedInDr Pamela Buchanan on InstagramEmotional Flatline articleKevinMD essay by Dr Pamela BuchananFEEDBACKLike 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.

OffScrip with Matthew Zachary
[BONUS] Eczema, Exit, Repeat: Dr. Barbra Paldus

OffScrip with Matthew Zachary

Play Episode Listen Later Mar 5, 2026 52:26


Dr. Barbara Paldus is the Founder and CEO of CODEX Labs, the sponsor of this episode.She grew up around Nobel Prize winners, built biotech manufacturing equipment for vaccines and cancer therapeutics, and then sold her company after an 8 year old threatened suicide.Her son's severe eczema pushed her into an unregulated $100,000,000,000 skincare market where parents are told to trust labels that nobody verifies. She explains how corticosteroid ladders leave patients with years long withdrawal, why U.S. ingredient oversight lags Europe, and how chemotherapy destroys the same skin and gut barriers seen in inflammatory disease.The conversation tracks the real stakes behind “clean” marketing: a child's immune system, hospital infections like MRSA, and patients trying to survive treatment without new damage. She also details the research path from Irish medical manuscripts to microbiome science and why sick populations become the only reliable regulators when policy fails.RELATED LINKSBarbara PaldusCodex LabsSekhmet VenturesDr Peter LioFEEDBACKLike 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.

OffScrip with Matthew Zachary
STEMM Cells and Broken Bones

OffScrip with Matthew Zachary

Play Episode Listen Later Mar 3, 2026 47:03


Dr Eugene Manley grew up in Detroit in the 1980s cycling through emergency rooms 20 to 30 times a year with asthma and anaphylaxis while hospital staff talked past his family and buried them in paperwork they could not decode. He responded by earning a BS in mechanical engineering an MS in biomedical engineering and a PhD in molecular biology cell biology and biochemistry. Along the way he tore his ACL training for a jiu jitsu black belt worked 86 straight days in a lab during his doctorate and learned how academic and clinical systems punish people who refuse to shrink.In this episode Manley walks through a recent post surgery ordeal at Mount Sinai Queens where staff falsified records attempted an illegal discharge and nearly sent him home on the wrong blood thinner. He explains how medical racism shows up in charts staffing and decision making and why measurable equity fails without accountability. Listeners hear how his STEMM and Cancer Health Equity Foundation builds pipelines for underrepresented students challenges clinical trial design and teaches patients how to protect themselves when institutions lie. RELATED LINKS• Eugene Manley Jr• STEMM and Cancer Health Equity Foundation• Village Voice• LUNGevity 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.

WV unCommOn PlaCE
Change Is Coming

WV unCommOn PlaCE

Play Episode Listen Later Feb 26, 2026 42:42


Topic: Education Reform, Healthcare Advocacy, and Running for Georgia Superintendent of SchoolsIn this 43-minute episode, host JR Sparrow sits down with Dr. Nelva Lee, a healthcare administrator, entrepreneur, and candidate for Georgia Superintendent of Schools. Dr. Lee shares her inspiring journey from Panama to the United States, her work in healthcare advocacy, and her vision for transforming Georgia's education system through literacy, trade certifications, and school choice.Growing up in Panama during the Noriega dictatorshipFamily heritage from Costa Rica and JamaicaMoving to the US as a teenager and appreciating democratic freedomsLessons learned from her grandmother Nelva about gratitude and work ethicObtaining a trade certification in healthcare during high schoolEarning bachelor's, master's, and doctorate degrees in healthcare administrationWorking as Director of Patient Advocacy at Grady Health SystemFounding a vocational school for medical interpretersCreating the certification exam for medical interpretersInvolvement with AI and human interpreting integrationAppointment to Georgia Department of Community Health by Governor KempLearning the slow process of government policymakingImportance of community engagement in healthcare policyAdvocacy rooted in personal experience with dictatorshipCurrent State of Georgia Education:Georgia ranks 38th out of 50 states in educationMississippi improved from 50th to top 10 by returning to basicsKey Campaign Initiatives:Literacy FirstNo child leaves second grade without learning to readClear guidelines for teachers on literacy benchmarksRecognition that prisons are built based on third-grade literacy ratesUniversal Trade CertificationsAll Georgia graduates receive high school diploma AND trade certificationBenefits both college-bound and workforce-ready studentsProvides financial independence and career optionsExpanded School ChoiceExpansion of Promise Scholarship ActMore public Montessori and KIPP schoolsMatching learning environments to individual student needsSpecial Education & IEP Reform:Concerns about overuse of IEP labelsIEP test scores don't count toward school performance metricsRisk of implicit bias from teachers toward labeled studentsNeed for appropriate learning environments rather than automatic labelingPost-COVID Challenges:Addressing learning deficits in current 6th-7th gradersMental health impacts from isolation (anxiety, depression)Need for motivation and self-esteem building"By the third grade, they're building prisons based on whether or not children are literate.""Every child can learn, but they need to have a learning environment that matches their specific learning needs.""Good leaders really are great because they motivate others to do the best.""Anything that you do for children lasts a lifetime."Learn More About Dr. Nelva Lee:Website: drnelvalee.comBooks and additional information available on her websiteFollow WV Uncommon Place:Instagram, Tumblr, Twitter, TikTok, Facebook, LinkedInMerch: wvuncommonplace.square.siteSubscribe and rate on your favorite podcast platformEducation ReformHealthcare AdvocacyEntrepreneurshipImmigration & DemocracySpecial EducationTrade Schools & Vocational TrainingSchool ChoiceLeadership & Public ServiceEpisode SummaryKey Topics DiscussedBackground & Immigration (0:00 - 8:00)Healthcare Career & Entrepreneurship (8:00 - 18:00)Public Service & Policy (18:00 - 25:00)Running for Georgia Superintendent of Schools (25:00 - 43:00)Notable QuotesResourcesEpisode Themes

OffScrip with Matthew Zachary
Callus on Your Soul: Jenny Opalinski

OffScrip with Matthew Zachary

Play Episode Listen Later Feb 24, 2026 40:12


Jenny Opalinski has spent more than a decade inside hospitals where people lose the ability to speak, breathe, swallow, and sometimes survive. A medical speech language pathologist by training, she worked in ICU, neuro rehab, and long term acute care settings, including a Level 1 trauma center, where she watched clinicians absorb 10 to 15 traumatic events in a single shift and then get told to move the crash cart faster next time.That lived reality pushed her to co found The Wellness Shift, an advocacy and education platform focused on healthcare worker burnout, suicide, and assault. In this conversation, Opalinski walks through the moment that changed everything for her: standing in a hospital hallway listening to a family wail after a failed code, followed by a debrief that addressed logistics and ignored grief entirely.She also explains how that work led to Humanity Rx, her podcast about the human cost of medicine, and Dragon's Breath: Calming Tricks for Big Feelings, a children's book that translates evidence based breathing and regulation strategies into language kids can actually use. The episode covers moral injury, time scarcity, false wellness, respiratory muscle training, and why empathy keeps getting treated as an optional expense instead of clinical infrastructure.RELATED LINKSJenny Opalinski on LinkedInThe Wellness ShiftHumanity RxDragon's Breath: Calming Tricks for Big FeelingsAspire Respiratory ProductsFEEDBACKLike 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.